Nomad JuanCa's Report

I'm doing several test just to see if i can re stablish the connection with nomadlife after long time offline here.... these are testing post, soon... the story will begin... again!

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Labels: New life

I have been feeling sick since yesterday... i have vomited, and got fever, headache, weakness... got a bit of diarrhea but not much.

I am taking meds and hope to recover soon... today i feel a bit better but i can feel, really... i can feel my stomach so so so weak. I am a bit scared of what to eat... like if i eat something wrong i will get worst... i don't like to be ill.

I was also afraid cause i have heard so many stories of people dying 6 months after diagnosis... i am already a 6 month old diagnosed person. I know there is no reason for me to die at this time, i mean based on my health... but.. well... the fear is still there. By october i will be 7 months diagnosed and perhaps i will feel i have overcame the fear.

Keep your fingers crossed so i can recover fast. gotta go. cheers.

Labels: New life, same illness

My friend Fatih from Turkey did this for me, isn't it cool?? He is a great guy

Labels: New life, Personal

Tonight is not such a nice night, i have been fighting with myself to get far from a person i really loved... and who perhaps infected me with Hiv. It has not been easy, i managed to be far from her for a month... just virtually talking but today i failed. We had sex again. It is something none would understand... when you love someone... this kind of things happen... and i hate when they happen, cause ... it brings more sadness at the end that any pleasure.

Because there is no love from her side.

So what the hell i am doing loving someone who does not love me? i don't know.

I wish i could follow my own advise sometimes...

Tomorrow i will meet my dermatologist in the morning, and request a meeting with an occulist at Social Security Hospital, last week i had pain in my left eye for couple of days, i want to get it checked to ensure it is not glaucoma. Looks like the virus keeps on working. Today morning i had diarrhoea... and i got afraid.. i mean... i have been without it for about 2 or 3 months, i was feeling proud of it. The rest of the day my stomache got stronger, i think it could be something i ate for breakfast (like the pork meat i ate downtown ;))

I don't feel confortable tonight... i feel like a bit empty... like if i had lost someone i loved ... like if ... my life would not be the same without her.... damn i miss her. Though it is better to be away... it is so fucking hard to do the right things sometimes.

Labels: New life, same illness

Hi there guys, how you doing? i think it was time to post an update for you about how my life is going.

I have been out of blogsphere because i wanted to have a time out, have been questioning myself lately why should i keep on writing about my life with Hiv. I mean, for me it is important to let others see and know... and even understand the way we Hiv+ see life. Even though, after 5 months diagnosed with this disease i would say my life has got a bit back to normal. Perhaps i have some things more clear now... like the need of keeping a good health, the conscience we will die some day...and that it won't happen soon... the difference with others is perhaps the fact we Hiv+ have accepted the final destiny of all human being as something real and closer than it is for most of the people around us. Together with he acceptance comes the chance to handle the fear and overcome it. Lately i have met some astonishing people. I posted about them in my Spanish Hiv Blog, i think you can read it translated to English by clicking in here. The translation is not perfect but i think it might be understandable.

The last post i wrote there took me long to be written.. and it took lot of my emotional energy as i was crying while writing... the kind of stories that are so shocking for you.. that you will only reproduce them once.

Well.. i have some good and some not good news for you. The good ones are... MY CREDIT CARDS ARE NOT CANCELLED!!! I mean the ones from Guayaquil Bank, somehow i could save them :) i am right now almost up-to-date with them i owe them 3usd that i cannot pay right now cause i already spent my whole salary paying stuff. It is ok, don't worry... something will happen. I am very optimistic right now, today morning i was worried and stressed about how to manage to survive until the end of the month... but right now i have the feeling that something will happen. Somehow... some way... The bad news is that i will have to pay a HUGE phone bill next month. And when i say Huge i am not exaggerating. Ok it was my mistake, i have been thinking and found a chance to solve it. Next month according to law we must receive some bonus so with that i will manage to fix it all... but really i will stop connecting to internet from home as it has proved that my addiction to internet could ruin me (...more?). LOL!!! Sorry some black humor sense :)))))

When things do get solved the first thing i will ensure is my internet access... but i will also try to reduce my surfing hours... addictions are not good things.

My health is doing great, haven't started diet... or better say... i started diet today, not because i wanted but due to financial constrains i have. Although you see... that's why they say "the end justify the means" :))). I am somehow eating light right now, and starting to take breakfast as my nutritionist advised me to do it. Not much money (not money at all) for fast food so that will help me to reduce the triglycerides and cholesterol. I even might lose some weight... which is what i want to. I am overweighted.

At work things are sort of fine, we are negotiating and hoping they pay us part of the sales of last month, because we did good sales despite we didn't reach the goal. We'll see. I am still looking for other options, even though i am so used to this job that it is hard to move on... i mean i know i should, but it feels so convenient... and off course it might be convenient but that won't help me to pay my debts. I am ok, i am calmed, relaxed and as usual... i am late for bed 1.50am. Tomorrow work in the afternoon but i have to wake up 10am to deliver back this internet device to the store and then get my haircut. So leave you by now. Have a great weekend.

Labels: New life, same illness

This weekend was nice, as i was free. We had holiday on friday but i had to work ... by the time i was free on saturday everybody had already their own plans and i wasn't involved. No problem i am not much of a going out sort of guy these days. So stayed home and slept a lot... i wasn't feeling weak, nor down... i just wanted to sleep... come on... isn't it tasty? sleeping and sleeping and sleeping? mmm i could spend my life that way.

I have talked to Javico, and in fact we met and spoke about what has he worried at this time, but he is not totally true with me so i am not sure how i can help him. I would say he suffers what most of us suffer... fear of exposure. Whatever happens in his mind and in his life that he is trying to solve with the help of Claudia is something he is not going to tell me. Fine. About his current state he says he is worried about his current numbers, they are not bad... but they stopped increasing. He is worried cause he thinks he might not be getting better. I tried to understand him but i sometimes cannot. I though he would have more knowledge about the disease... i think he is starting to panic, plus the side effects of meds are pulling his nerves apart. I am afraid. I am afraid he may lose the control of the situation and of his life. What get you going is the control and perspective you have about your current situation... if you lose control and optimistic perspective you are nothing more than a blind person walking around and not aware of where the abyss is... and yes... some people fall into it.

I guess i can try to give him words of hope, and motivation but they might not help him much at this time... i feel he is listening but not understand what i tell him. His problems does not come from outside but from within. And that part of him has restricted access so i cannot help him, i guess the solution for his problems should come from within too... where they are usually harder to find. I found out he lied to me before... couple of months ago i asked him about his numbers and he told me he had CD4 of 350 and Viral Load undetectable... now he told me when he was diagnosed his CD4 was around 15 (and now you know why he was about to die) but they have increased until 150 and they established there. I have good memory for the data i am interested in and as a good friend i was highly interested in his health. I realised he had lied to me... and i actually don't know why... i mean... he knows all my life, same like you all do.... well you don't know all my life, just what i write here but it is big part of it. Well, it was not the moment for complaining nor asking why he lied, i just listened. I tried to give him some words of hope and strength but i guess my words are not exactly what he needs... i cannot help him much this time... and feel somehow useless, he is the only one able to get over this situation and step into a new bright life. I suggested him to talk to God... yeah, i believe in God and i think it is him who has me so calmed... i have battled with him before (God) but i know he is still here and we get along better cause i know i have nothing to hide to him. He understands me.

This week i want to think and analyse about something i was thinking today at night. The evil inside. There is an evil inside all of us, we are not all pure not all bad.. we are mixture of many things, but the worst things we have are mostly not exposed. Because we were told we had to hide them from others... we had to simulate "we were all nice" and forget about the hate, fears, frustrations ...about all demons living inside of us... The problem is that sometimes, they come to the light and for much of us.. we are not able to see them face to face and accept they are a part of me... and a part of you too. Sometimes, those demons inside.. claim for our lives... and yes, sometimes they use the worst inside us to make us fall, to make us fear... those things we cannot accept and understand from the nature of any human being and that hurt us deeply once exposed.

All these years since joining Aiesec and perhaps since borned it has been a fight and a continuous path to accept my own demons and deal with them. Some of them i have over come them.. some others not. At least right now i am not afraid of saying i was a depressive guy long time ago back in high school and even was somehow suicidal. I also was this type of guy with a bad image of himself and insecure.... who me? YES ME!!. We all have devil inside and we all know how to hide them... for long time i did it too. That was long before AIESEC and lasted until the time i improved my relationship with God. This is my truth, does not mean it has to be other's ... but is just mine and i am thankful for the fact i can say some of the bad things i know about me... because it means they don't hurt me anymore. Those demons are unable to claim my life cause i have already defeated them. I just wish my friends could do the same. It took me long to value myself for who i am... not for what i have or what i did or do. Right now i am learning about it and suddenly... i realise that loosing everything (material) i had wanted to have means nothing, loosing one of the most important internal things i had (my health) means not much... and that i am still alive and valuable. Now i finally value myself. Me, who i really am. With all my mistakes and disasters from the past... with all the failures and troubles i have been facing and trying to fix... i love my life because it has been something i have made with my own hands. And i love myself cause it took long to reach here... and be the person i am today... and off course as you know it was not easy... That's perhaps the reason why i am not afraid of being so exposed... because it forces me to be sincere with myself and others.. it forces me to be really me.

My current demon inside is the fear... that leads me to negation. Fear is such a fucking hard thing to destroy. And perhaps it is better not to eliminate it completely.. but fear, like any other beast... has to be domesticated. I am working in doing it so... so it won't try to bite me and eat me anymore. My fear shows his face when i don't answer my phones, when i get my bank monthly letters and i don't open them or when i over react about something i read. Claudia was telling me in my last meeting that i have been over exigent with me, despite the good assimilation process i have had with this disease. I still need to know world can be changed in one single day, and care a bit more about my life and train my fear to obey me. So... the steps are... start slowly... opening the banks monthly reports.. i have lot of them unopened. So... lets do it now, lets open one of those i know i haven't paid (i usually i don't open the others cause i have payment agreements with the banks so i somehow know how the situation is with them). Ok, let me open this one and we will see. Hold on...ok, first one... Unibank monthly report of...24/07/07... debt 494.68 USD (in fact the debt is over 1000 USD but the minimum to pay is 494.68 USD). Damn.. as obvious i cannot pay them. I can hardly pay what i am paying in my other banks... ok, i will try to talk to them and see if i can reach a payment agreement (don't know from where i would pay them but i will see). Next one.. Guayaquil Bank. I signed a payment agreement with them for my Visa credit card as i was told they would not renew it. I will do my first payment from this agreement after 15th of this month. Once signing the agreement i was told my credit cards were blocked and cancelled. Which was sad... last thursday... i got my new visa credit cards from them. So right now i am not sure if i will be able to keep them or not. I wouldn't like to lose them (my visa credit card and the extension i requested for my mother use).. i had them for couple of years and was a good client. Ok... i will have to go the bank this week and talk to them to see if i can keep them or not... but as for what i was told i mostly won't be able to use them anymore.

Done, first step to defeat my fear today. Do i feel nervous? Yes... do i feel sad? not sad but not as happy/strong like before. Did this hit me? yes... it did. At the end one has to understand life is like this... sometimes it caresses you, sometimes it hit you.... but life... always... always teach you and makes you stronger. The most we let the light come into the darkest sides of our lives... the less demons we will have to be afraid of. At least i won today.

I read this on internet long time ago, i think it belongs to a movie.

"Everything I've learnt about life I can sum up in three words: it goes on."

Sunday was great at my sister's place, ate a lot... a lot ... a lot... a lot. Played to the kitchen with my youngest niece (not the playing to the kitchen would really be my thing... but she found none else free to play with her LOL.). It was fun, in a moment i was feeling tired and found a way to scape from her (and her lil plastic kitchen) and went to my mom's room to sleep. She found me some minutes later and woke me up :) and brought all her kitchen to the bed to keep on playing :))))) hehehe, those girls are awesome. I had a good day today, I am ok and happy with my life. And the best is that i know i can still make it better :)

Tuesday morning, appointment with my Dr to get my new results, i told Claudia i was feeling fear.. but i am about to get over it. I feared a lot the HCV but she told me.. "you know... you still don't know if you have Hepatitis C Virus (HCV) so why are you looking for info about treatment options?.. come on, lets get the results and then we think about it... chances are you have nothing and your worried without reason". And it made sense to me. Psychologist are smart people, never doubt about it.

Gotta work tomorrow morning, but... i want to play another session of Age of Empires before going to sleep :)). Have a good night.

Labels: New life, same illness

I am glad things are going back to normal these days. The "forced" popularity of this blog is finishing as the numbers of visits are reducing... I guess Dody might have been crazy seeing the numbers of hits this blog got in matter of three days. It grown from 15 visits per day till over 100 per day... and now is back to 36 per day. I never desired such a promotion but i have always believed things happen for a reason... so i have to thank God for all that happened cause i think it was meant to teach me some things and I did learn them. Plus,.... well i hope at least someone applied to support Ilga's report about Laws against Hiv travellers, which is a good thing to do.

As for me i am doing OK, friends advised me not to take it to the heart and forget it and i'll do so. Glad I wasn't banned after being in there for only 4 months...i know those of you who know me, know i am not THAT polemic. Luckily i think moderators though the same. By the way... AIESECers, let me tell you this... the world needs more of what you do... believe me. I swear it!!!. My friends who were aware of all what happened advised me to visit other places where i could keep on learning about the disease in a fresh/new environment. Sandra suggested me a Spanish forum, ...mmm, sounds good...why not? i mean it would be easier for me to interact there since i understand the way people think in Latin America, the rules, and language would be a plus... I know i do speak excellent English (leaving the few orthographic and grammar mistakes i have and knowing i use spell checker before posting in here) but i understand sometimes excellent is not same as native. If you don't get what i mean... then try to speak Spanish and interact in a Spanish speaking forum... i guess those who speak more than one language and/or have lived/worked in multicultural environments might understand me better.

So after thinking about it i decided to participate in both places. It is going to be good i think i will learn a lot from both sides and will help me to have a broaden picture on how people deal with this. I mean.. from USA i can get info about the treatments, developments and so on.. being that i consider them pioneers in the war against Hiv/Aids.. but from Latin Americans... i will touch my reality... the lack of resources, corruption among poz leadership, negligence and the most important.. the way latin poz manage to survive in here. Yeah, sometimes i wish i could live in Europe, but i am in Ecuador and despite how many nice things i can learn on american websites the truth is that less than half of those options are available in here.... and lets be sincere... i fear Hepatitis C.

ok, I am going to say it... i read somewhere about a person who has a co infection... Hiv+ plus HCV. I don't know much about the issue... Max (who is sort of my health advisor) told me that there is one thing worst than having Hiv... and this thing is having HIV and HCV. I remember i asked him when my Dr failed to prescribe me the test... "how bad could it be?" and he replied "it is very very very very very bad". SHIT!!. I am about to get my answer of the HCV test in a week... ("IF" they did the test right this time not like past one where they didn't and it took me 2 months to be informed about it). I read this person is following some treatment, which brings to him strong.. very strong side effects.. but at the end could cure him of HCV... and you know what??... i don't think such treatment is available in here. Why?... well, for example from all Hiv meds approved around the world ..... here we have less than a half.. and they are out of stock at least twice per year.. and this usually last from 1 to 3 months. So... i can learn lot about the developments and all the stuff.. but the fact is that i cannot fight the disease same way cause i am living here... don't know if i ever will be able to have right access to meds... or if i will remain alive until that happens. And yes.. it is frustrating...now you understand i have many things to think in my life, if you add to this the CMV stuff perhaps, only perhaps you might find a reason to be afraid like i do... just perhaps... only a little. Having said this about the HCV (which was running in my mind trying to find a way out...) lets let it go and move on. It is so damn good to have a blog!!.... anothing i have to say is... my fear and axiety for the HCV is increasing as the time to meet my Dr and receive the results gets closer. You have to control yourself JuanCa!

So i gave it a try, to the new place.. mmm it is nice... i don't like the interface much... sort of cold... the one i was participating is more human... very very very human in fact (LOL). Still with it, reading spanish and being able to understand them completely feels nice. I just noticed we use different words... i always say "HIV" and they say "VIH". I say "Seroconversion" and they reply me "what??? ah you mean primo infection"... (primo means cousin in Spanish... so it sounds sort of funny to me). AND.. the funniest thing...in this HIV Spanish forum... NONE OF THOSE WHO POST "ARE" POZ. :))) Can you imagine?. Now you know that when i say that people live hidden in here i am very serious about it... they don't even disclose in internet forums.. oh come on... wake up guys!!! Wake up and live!!!.

Sandra advised me not to mention i am poz in there... she said "they will be crazy and will overload you with questions". Although i told her... i think i will say it, i mean perhaps if they see i am doing well while living with the disease it might help them to understand they don't need to fear.. they have to protect themselves!!! Plus it will reduce the stigma. I posted my introduction very light and friendly (the way i am) and today i already got questions back...but there was a pm that called my attention, there is this woman married to a poz man who wrote to me something like "Hey.. so glad to hear from you. Thank you for the motivational and optimistic introduction, aren't you the guy from aidsmeds??? i was just reading some posts over there yesterday night!!!!" OUPS!!! WOW WOW WOW... looks like I am not so unknown after all. Perhaps she got to know me after my sudden popularity incident hehehehehe :).. i wasn't aware i was so exposed, i told a friend "perhaps i am more exposed than i though" and he replied me "YES!! YOU ARE!!". In her message this woman also said something i already knew.."you know i sometimes go visiting there but i didn't subscribed cause you know.. the language and all that stuff is hard for me". Yeah i know it, i knew it and i was sure things like that was happening. There is a huge gap of information in Latin America due to the communication problems... mmm perhaps while i participate a bit, i can help to reduce that gap. So i am happy today, living in the middle of two worlds.. and trying to feel in both of them like home. Both places mean something for me now, and i hope i can cooperate. I keep on thinking we should connect people instead of separating them... it is a way to accelerate changes the world needs. I wanted to post about what i read regarding deafness and Hiv today.. but you see... it always takes me one or two hours to write a post in this blog.. right now it is 2.35am so i guess i have to go to sleep. Tomorrow have to wake up 9am.

Ok, well have a good night everybody and hope you enjoy a calmed live, it is one of gifts sent from Heaven.

Labels: New life, same illness

Guess ... late at night on sunday, yeah i was just finishing a surprise and sending it. I hope everything works out fine and i think you will be quite happy once knowing the result. So let's wait and see.

Today in the afternoon i was dying tired at work... damn... i could not remain awake... Ricardo my co worker looked at me like wondering what was happening... i could not stand the need of sleeping.... i told him "you know i am very tired, i need to sleep... could you serve clients while i sleep for a while?". Yeah... i know.. it is not supposed i should do this at work, i am a hard worker really... but today i was talking to clients and falling sleep almost in front of them... there was a moment when i could not go on....

I am not sure how long i slept.... perhaps one or two hours.... then i was feeling a bit better, just thirsty... I think i am making a bad combination of bad costumes for eating, few sleeping time and Hiv. I fear sometimes when i feel so tired... fear my CD4 could be going down and down... but at the same time i try to think it is not about my CD4, it should be that i stay awake until late at night and usually sleeps 5 to 6 hours every day. Or could be both... on August 14th i will get to know. I wonder how i would feel if the my CD4 tests are lower than previous one... i mean, i know thats what should happen.... my CD4 is supposed to go down in the long run... i just desire so much it would go up and up and never come down. I can say i am somehow educated about Hiv to face a lower CD4, at least mentally... but emotionally is another thing. I hate when i left my ID Dr office trembling... i just simply hate that!!!.

Today i took my pills (vitamins) yuppie!!!! but i have to admit i have no schedule for them yet. I mean i don't like to take pills, i was never a pills lover... i am not used to them. When i take mines it is ok, i almost don't think about Hiv... but i hate the idea of needing to follow a schedule for them.... i don't want to. So right now i am having them... but not having them under any schedule... just under my own motivation and timing. I need time to adjust to this pills stuff... i need more time.

Today i watched a soccer game on TV!!!. It is big news since i don't watch tv and i don't watch soccer games at all...i have always said i prefer to play soccer instead of watching it (i used to be a good soccer player...mmm.... 10 years ago?). Although today there was a good reason... LOCOMOTIVE team from Moscow was playing!!! I could only watched the first part of the game, i think it was against Milan team (or something like that... you see, i am not good in watching soccer) but until the time i stopped watching (half game) Locomotive (ФК Локомотив Москва ) was 3 to 1. Ochen Kruto!!!! You can imagine myself seating very close to the TV with a small russian flag in my hand moving it like if i was in the stadium :) Yeah, it felt good :). I should have gone to the stadium to see soccer games when i was in Moscow, i have to do it some day.

By the way, Max sent this to the list of the Ecuadorian Coalition of People living with Aids, being that this blog is been seen by so many people right now... i though someone could find this interesting... check it out.

Dear friends, dear fellow LGBT activists, ILGA plans to launch a world report on state regulations that forbid or impede HIV positive people from travelling to some countries, mid-October. We hope that a launch in October will allow LGBT and other groups to campaign with this report around December 1 2007.

As we did with the State-sponsored Homophobia world report, we are working with an existing report. This "HIV/Aids Travel and Residence Regulations for HIV+ people" is the work of Peter Wiessner, from the German Aids Foundation and David Haerry who now collaborates with the European Aids Treating Group (EATG).

This report can be seen online at http://www.eatg.org/hivtravel/

We are now looking for volunteers who could translate and proofread this report in the following languages:

- From English to Portuguese
- From English to Spanish
- From English to Russian

If interested, please write to volunteers@ilga.org or stephenbarris@ilga.org

I thank you in advance for your continued support, Stephen Barris / ILGA

Ilga is a network of gay people working on calling the attention about this issue but i think the request for volunteers is opened to anyone (gay or not) who would like to cooperate with this report. As some of you may know... nowadays there are many different countries banning the entry of poz visitors for different reasons. To help this report could be a way to help to call the attention about this issue. Ok, gotta go to sleep now, have a good night.

Labels: New life, same illness

Artist: Amaral /Song: Sin ti no soy nada /Country: Spain

It was such a nice day today, went to do my stuff, and then to sister's home. My nieces called me twice to ask me why was late. Finally got there and could see them. The oldest is feeling better, she is actually looking good, which makes me feel so happy. The youngest is a bit ill, randomly she gets asma episodes, i faced the same when i was young but when i became a teenager i somehow got over it. Hope it happens the same with her.

To talk to them is very funny, the older was quite happy and excited about tell me the whole story.. and the youngest wanted to do the same with the few vocabulary she knows.

When the oldest would say "You know i think the scorpion came in when mom and dad left to work and i think the lil scorpion was looking for his mom" the youngest would say "mommy daddy work scorpion mommy there is no" :)))) yeah well i am an uncle in love, so for me this is all meaningful, i feel sometimes with them i can live after my death. I mean, when i got to know my diagnosis one of the things i found sad was the fact that i had learnt several things from life and didn't have anyone to share them with.

I learnt to try to understand others and try to put me on their shoes, I learnt that the best one can do in life is to have a clean heart... if i do a mistake i do apologise. I learnt the meaning of using cultural understanding with others even if they don't use it back. By the way.. AIESEC, thank you!!. This skill have been enormously useful for me!!. I also learnt after my diagnosis to focus on what matters in life... therefore i am harder to hurt, not because things does not affect me... but because when such things happen there is something in front of me saying "you know... you might die tomorrow and this specific situation is not life altering one... so solve it and move on".

I wish i could spend more time with my nieces, i could perhaps explain them the importance of these things and when i am gone they will avoid certain experiences i already faced. i have to talk to the oldest one about hiv and aids one day... damn!!!... Since my sister knows my diagnosis we talked about how to tell to the girls the other day.... i mean i won't tell them now, they are too young... but when the oldest become a teenager.. it means in couple of years... she will have to have "a talk about sex, about all the good things and the bad things that may be". We already decided with my sister how we would do it... she will have to deal with the sexual part (the duty of a mother hehehehehehe) and i... i will deal with the part of Hiv and other STD. And i will disclose to her. Because disclosing helps to prevention.... And if there is something i would not accept is that any of these girls gets infected. The day i talk to her about all this will break my heart... cause i have seen faces of people when i tell them about my diagnosis, specially during the sensibility trainings i was speaking in... something i wasn't very much aware and i think others are not aware is the impact that an indirect diagnosis (to call it in some way... mostly known as disclosure) has in people. Indirect diagnosis = effect a person feels when knowing someone he/she knows or care or is talking to him/her has Hiv/Aids. I think most Hiv poz tend to think in what we feel... what we want... and so on, which is ok... but i guess in Ecuador there is still a need for us to look around us and see this is not only hurting and socking me but my whole family, my friends and everyone who i meet and i disclose.

Right now is like that, i believe with the years... the weight of the diagnosis will be less and less... as long as the issue becomes part of our lives and we avoid the fear... I said it before, the illness won't leave, but we have to learn to handle it and fight it. I hope to find a way to reduce the impact of an indirect diagnosis on others.. specially when the time comes to talk to my older niece... if i break her heart it would be the worst thing that could happen to me. Still with it, i know she would recover, she is such a smart and strong girl.

Couldn't stay long with them, had to cross the city to arrive to my work on time. Once there i stayed the rest of the afternoon/night working with Ricardo, which was actually fun being that today was not such a difficult day at work, you know sometimes when you have time to talk to people you get to realise that person might not be that different to you as you though. We talked about the fact that since Gary left his position and our company they have hired (and fired) two people this same week. Amazing... First was Ma. Fernanda, who was transferred from the new store they just bought, she didn't liked and started to complain... fired. Then it was Xavier, an old friend transferred from another store... he was some kind of lazy guy and was caught up on Friday by the new Administrator who got extremely pissed off and talked to the owner (his sister) to fire Xavier. Now they just decided to remove him from staff position and put him like external salesman without salary only commission... in case he accepts. Well, together with Ricardo we came up with an idea on how to help with the situation being that Rosa still have a month before her after pregnancy vacation time finishes. Let's see if it works.

I had some troubles with my new anti virus and my old Ares programme, the one i use to download my mp3. Got to change it, but this new one (in Spanish) has got a very cool interface. I am right now downloading Lara Fabian's songs, she is a French singer with an extremely powerful voice. Luz, by the way here i am posting two new Artyom's Song. The first one is one he sent me some time ago (romantic as you requested) called Crying Now (right click, save target as) and the other one i think you might like, is a new one he just sent me last week. This is a bit mixture of romantic and more dance, it is called I'm still alive (rick click, save target as) isn't it a great title? and it is a great song for sure, hope you all enjoy them. The singer is named Artyom Sennikovsky, a russian friend of mine. (hope one day he will be known and recognised by his talent). About Tino Walter, you can find his Musical website here where you can find some of his works and even download his MP3s. In case some of you don't know him, Tino Walter is a peruvian friend of mine who is also a great musician and respected in Peru. So glad i am friend of two very talented artists :). By the way if anyone likes French music, i just downloaded two songs which are awesome!!! "Lara Fabian - Evidemment" / "Lara Fabian feat Maurane - Tu es mon autre".

Forgot about my vitamins today again... i think i don't take them since 2 or 3 days ago... where is my mind? I have to establish a schedule and follow it... otherwise how am i going to learn to stick to the ARV treatment when the time comes?... JuanCa, JuanCa, JuanCa... you have to focus. Anyways the pills my sister bought me (loratadina) are gone by now, i also got rid of vitamin c long time ago, right now i only have some multivitamin pills and flukonazol.... mmmmm... let me see....August 5th... mmmmm... will have my appointment with the ID Dr in 9 days... to see "if" this time i have any answer about the Hepatitis C test, and to get to know my CD4, mmm hope it goes up.. i will talk to her about this CMV/Toxoplasmosis thing (mostly she will not know what i am talking about but i have to "convince" her to prescribe me tests)... i hope the bitch does not ask me same question she asked me when i said i wanted to get tested for HCV "Why do you want that test?"... because i want to stay alive bitch!!. On Monday i have to go paying to the other bank... perhaps in the way back to work i might pass by Social Security Hospital to see "if" they have my prescriptions. I have to check to if my prescriptions are not out of date by now.... and pray to God there is a miracle and they can supply at least one of them.

Gotta go sleeping, it is very late and tomorrow i have to work whole day (10am - 9pm). Good night to my friends.

Labels: New life, same illness

Today is such a wonderful day in here. Not too hot not too cold. Not too shiny not too dark. I like days like this, it remind me Moscow in the mornings, except for the fact that there is no Kremlin in here :( buuu.....

I have several plans for today, i have to go downtown to pay some stuff and then i might be visiting my niece to see how she is doing after her accident. I will try to spend most of the day and then go back to work by 4pm. There are exciting news coming from work, the company have appointed and new General Sales Manager who will focus on large accounts, which is great. My boss got her mom under surgery, i hope she is doing fine, the lady is very nice person.

I finally got some info about hearing loss and Hiv, i haven't read it all yet but i will today afternoon, but as for what i heard it is not a big issue in these days, being that ARV therapy is available and could prevent me from facing this. I gotta read this well, i have heard cases in Ecuador about people facing lot of troubles due to opportunistic infections and facing some of their capabilities. As for Toxoplasmosis, i told Claudia, who wanted to give me lil cat, that i could not take it... i usually like pets, though cats are not my preferred ones.. i like more dogs, anyways i would not accept a cat being the risk of toxoplasmosis in the future. Plus my schedule is sort of complex, i think i will perhaps accept a "low maintenance" pet, perhaps small fishes... i have always wanted to have those, or birds.

When i was working at Los Ceibos, an upper class neighbourhood.. i found once a house that was like a dream. They have a nice yard not too big where they grew up bonsais and some birds too... the birds were so used to the environment that they went in and out of the house freely, even dogs saw birds and didn't attack them it was like a dream... i think i would like to have something like that one day.

I was worrying the other day about the changes or challenges i would face being hiv+ as i get older.. i mean ageing brings its own challenges, perhaps being older and hiv+ could be harder. I don't know. I think (not sure) it also depends on how long have you been living with the disease... as for me by the time i cross the barrier of 50 i would be already living 20 years with the disease... long time, don't you think?. I hope during those 20 years the expectancy of living has changed, here in Ecuador i was told that using ARV people would live a minimum of 20 years after starting therapy, it was sort of funny/sad when i first heard this... i remember when i was first diagnosed and everybody used to tell me "don't worry you will live 20 years yet" "everything will be fine at least you will have 20 years time to adjust to everything". Second or third time i met Claudia i remember clearly i asked her "Why everybody is telling me i will live 20 years?? i mean why 20??" She replied "Because that's the standard of living expected after someone starts therapy" and i asked her "but why 20?... what will happen after that?". She said "i don't know...". The illness itself is quite "new" 25 years until now.. there have been people diagnosed this time and still alive.. but unfortunately it is not a majority... still with that, 20 years is pretty good time, i mean i don't have plans for all that time yet... i have to organise my time lol. Not sure right now if i would like to live all that time, i mean if things get harder and stuff like that... who knows.. i still don't know what else can happen, so far i am doing well with the illness, not much troubles and that scares me sometimes (isn't it weird... i mean to worry because of not having health problems), so I'll see.

Luz, tonight i will post the song from Artem you asked me, and will provide the link to Walter's musical site. I haven't forgotten about it. Gotta run to do my stuff now, have a great day!!

Labels: New life, same illness

Ok i change oppinion. I am not taking vacation of Poz Forums i will be in there as usual.. after all, i am fixing what i did wrong.

I like to help people and have made good friends in there, so i will stay and try to keep on helping people and sharing my hope for a good future for everyone.

Labels: New life

Guess what?... a poz forums user with the nick "matty.the.damned" (suggestive nick, huh?) visited this blog and went to the poz forum and wrote a public complain for what i wrote yesterday about CMV and the stories that impacted me. Same like i said before, i never write thinking in hurting anyone... but i guess some people like to exaggerate and go public with small things. I got worried not for what he wrote, but because of the fact i could have hurt someone... if you know me, as i know some of you do... you know i try to never hurt someone... not even my worst enemies (if i have any...). So i got worried about it.

I was lucky enough that my boss called me early morning to ask me if i wanted to change my working schedule today, so instead of working at night i could work in the morning and i accepted. Spent the whole day working with my mind full of many things and not having even time to worry about this guy and his scandals. Still with it, i though i should say something... but as i know international communication is not an easy thing i talked to some friends in different parts of the world to ask their advice: My sister, Sandra from Mexico and Kaire from Estonia. They all agreed i hadn't done anything bad since my post was not about the private live of other people, but about how scared i was knowing i have to face CMV (imagine this.. i have to face/get educated on CMV and still deal with scandals from others... you see, life is never easy!!).

I wrote to someone i know in Poz Magazine and then i posted a reply on poz forums explaining the whole thing, i just wanted to make sure people would not buy the wrong idea was sold to them... here is what i wrote.

Hi Matty, thanks for writing... i guess it would have been better if you didn't exaggerate saying i reproduced "the whole thread". Well up to you. Today morning after reading what you wrote, i wrote to someone from Poz Magazine explaining the whole thing. I talked to my sister and a friend and they told me it would be good to also post my comments in here.

So here is partially what i wrote.
--------------------------
Hi... i think i did a big mistake and started a big trouble....

You will kill me .

Yesterday night, i read a post in poz forums from a guy who is facing deaf after hiv... i wasn't sure if it was hiv related (never heard about it)... i pm some old members of forums to ask them if this was possible, i was not aware of such risk but when i had finished pm them... they were offline already.

I was frankly nervous and shocked... i even didn't post a comment to that thread cause i didn't know what to say and i didn't want to say "sorry... is this you are facing due to living with hiv??". As i was very nervous, i decided to write about it in my blog... NOT about the thread of this person, but about the fear i felt and how surprised i am of knowing this is possible. I did reproduced the original post of this person and two comments that got me equally impressed and a pm reply i received from a forums member about this. I would like to ask you to read what i wrote http://juanca.nomadlife.org

I did though about it before posting, i mean if it was right to post the original post and the 2 comments (not sure if posting a pm i received could be wrong). I though that since i didn't give the url to the thread (though mentioned it was from poz forums) and since i didn't put the identities of this people in risk (since there could be millions alain, queen
akasha, christine in the world, plus in the forums they don't use their real name so in fact they are impossible to locate) and since the post was NOT about them but about how i felt when i read what they wrote... i though it would not be bad.

Today morning i got a comment from the user matty.the.damned saying it was moot from my side to post those comments and he posted a comment mentioning my blog in the original thread this guy started.

Then i came to realise i perhaps did it wrong, perhaps i should have only post the url link to the forum so my friends could read what i was talking about. My personal blog (the one i have since over a year ago and way long before diagnosed) is read by my friends only, i don't promote it anywhere cause it is a personal diary for me where i write about my feelings and what makes me fear, i did disclosed my status there long time ago and i have found some of my friends who read it have understood the way i face the diagnosis and got to see hiv from a different point of view. The reason i write it in english is because i have friends from ukrain, russia, estonia, ecuador, usa, and other places who randomly check my blog and post comments. I have also wrote in my blog several personal experiences and telling others how i felt to try in some way to break the stigma they might have towards diagnosed people. Still with it, my blog does not receive many visits i think 20 per day (since it is intended only for my friends so i don't promote it).

Well, the thing is that right now... i am feeling bad. I never meant to hurt anyone nor to "put things for other consumption" like matty.the.damned says.... i was writing about something i just discovered yesterday night and i didn't know before and that got me extremely scared.... i wrote to queen akasha, aztecan, basquo asking them about this....i mean if it was possible to be deaf due to hiv. An Ecuadorian friend was the one who confirmed it to me... and i was terrified. To write my blog is a way of venting for me, i could not vent this in the forums since in other times i have heard others hating "sky falling"attitude, which was a bit of what i felt last night...i still have a lot to learn about this disease. The other reason behind my post was to tell my friends who are not poz, that they should be more considerated with people who are deaf, cause i understand it could be my case in some years...

You know i could have only post the url address and it would perhaps have been better, anyways whoever who is not member of the forum only a guest could read the thread and understand what i was talking about. I just though that if i would have done it, people could have seen for instance queen akasha's pic, and i didn't want to put them in exposition. So i wrote about something i read and touched me... once again i didn't write ABOUT THEM, but ABOUT HOW I FELT DISCOVERING I COULD BE DEAF, BLIND after some time.

In my same blog i have copied posts from Regan and Lisa for example but i have provided a link for their blogs because i think it would not be a problem if others find them and their blogs, also it was a way to promote them. I didn't do that this time cause it was not my intention to promote anything, i was only coping something i read somewhere on internet and got me impressed... if you read the post it would be easier to understand.

Yeah, well perhaps i did it wrong but i didn't find it wrong nor risky for anyone when i wrote since i didn't provide a way to locate them, and it was not about anyone, but about an opportunistic infection and how it could affect me after some time.

well... i feel very bad now, i hope others will understand i didn't mean to hurt anyone.

Sad JuanCa
------------------------------------

Apart from this i have to say three things...

1. This post didn't put people's identity/anonimity in risk, the post was not about cowan or queen or christine... the post was about cmv and how afraid i am of becoming a blind/deaf person. I understand now some of the above mentioned might feel angry... so i offer my deep excuses TO THEM as it was not my intention to hurt/offend them.

2. Matty's comment is over promoting a blog that is not very popular on internet, cause it was meant to be only for my friends. Anyone who read it won't be able to locate anyone in here but might understand and see cmv and aids from a different perspective. Once more.. the post was not about the lives of specific people... the post was about WHAT I DISCOVERED ABOUT CMV ON INTERNET and GOT ME SCARED. I could have done same post even without being member of the forums but only guest in here... in fact, the forums have more "guests" in here on daily basis than my blog....cause mine is for personal purposes.

If as a result of this, you want to ban me from the forums or even delete my blog ....feel free to do it... You know, i have enough troubles in my life learning to live with hiv, dealing with negligence of my ID Dr and my debts to add one more caused by the exaggerations of matty.the.damned... although i just hope you understand things are not like matty.the.damned showed them. In any case if you are up to deleting/banning me in some way... just be kind of letting me know by email. I gave all my contact info published so if anyone feels like emailing, insulting, complaining... be my guest. Have no troubles with it, i am an addult therefore responsible for my actions and its consequences. I don't hide.

have a good day.

aha... sounds like a big soup opera huh? like "Los Reyes" or "Hasta que la plata nos separe" (Columbian soup operas), but yes it happened. I actually don't know why this "matty.the.damned" came to see my blog being that he is NOT my friend and i don't talk to him since couple of months ago when we had a disagreement and i realised i didn't want to keep communicating with him anymore in order to avoid scandals... i mean instead of dealing with a virtual scandal i prefer to deal with the several real ones i have to solve everyday. Yeah well, internet is free it is something i have to respect.

A strange thing was that while i was worried about some people's lives being hurt or offended... some other people started to talk to me about copyrights of content and so on... i mean... what is more important? people feeling hurt or copyrights?. Ok, yeah i am latin... i focus more on people... that's another difference between latins and people from other countries. You see, cultural understanding is always needed... Well, as Latin America is not very strict with copyright stuff and internet nor aware of the laws applying in other countries i wasn't really sure what they were talking about... i mean... i can still download any mp3 song i want for free and without any trouble!!! (God bless Latin America!!!). So i posted the above mentioned message (and i hope none will complain now cause i am posting here my own words... now copyrighted by the way ;)). and then answered few questions. By the way, i found some people are still surprised of my English skills :) not so bad huh?.

Then found something else to worry about, something more important and REAL. My older niece (9 years old) was hurt by an scorpion... damn... you see, i was trying to fix a virtual situation... when my REAL nice was hurt by a scorpion... God damn!!! where is my mind??!!! (copyrighted by James Blunt). She was waking up in the early morning and while she was leaving bed the scorpion hurt her... she screamed and luckily my mother was there and could call my sister and brother-in-law and they called the ambulance... damn... when i got the news i almost die... she is ... she is like my daughter... she is so young... i mean you never ever imagine someone so young could be in life danger... i would have expected to face troubles being hiv+ but not a lil girl like she is... :((((( damn..... Now you see, life is not sure for any of us, despite being hiv or not.

LUCKILY... my older niece got the health care she needed (in some way, cause paramedics were not sure if the scorpion's poison could kill her or not... even though my mother captured the scorpion and kept it for the paramedics to see it). Paramedics said some scorpions could kill people... (but i guess they didn't know which type cause they said "we have to wait and see".... wait and see??? fucking bastards!!!). My niece got some injections and then fallen slept, she woke up in the afternoon and is feeling better now... damn... i love her. I talked to her over the phone... she is ok now, few pain in the foot but not really much. My youngest niece (2 years old) was present and was terrified of the scorpion.... now when you call she can tell you the whole story in her own words "uncle uncle andrea scorpion pum pum yay yay!!!!". Damn i felt impotent when i heard the news i wish i could have known before i could have done something... ok ... lets thank God she is ok and healthy. Thank you God.... she means a lot for me.

I think i have a lesson out of this day... sometimes for caring about virtual stuff or virtual life however you call it, we forget about what really matters... REAL LIFE and the people that makes our REAL LIFE important and meaningful, like my family. For me it is a pity that a personal blog like this one, was used to create a scandal.... increasing its exposition without any need or sense... yesterday at night there were 3828 visits in this blog, today by the time i am writing this there have been 3871 visits, it means the vistis of today have been over twice more than normal days..... That's too much if you let me say... taking into account i am not interested in promoting this site. The good thing is that i assume all of those who came and read, found out the blog didn't inted to hurt anyone... i though i would get houndred emails with insults since i am easily reachable from poz forums but no, none wrote me with insults. Thanks God too. Sometimes things in life happen that way, one is not looking for promotion/attention but it arrives without being requested. I haven't been login nor participating much in the forums lately and today I decided I will take some vacations from it, will visit it once per week or so... i guess if i start having troubles with "virtual life" it just means i haven't been doing things with my REAL one which is the one that really matters. Like Dragonette said "lets experience and enjoy what you experience".

Labels: New life, same illness

CMV, AIDS...and how some thing happens...

I have always though people don't understand hiv+ patients cause none let them saw in our minds or some of them really don't care on what we feel. Today i discover something new... just few mins ago... chances are due to Hiv i could lose my view and hearing capabilities... if i develop or get infected with cytomegalovirus (si-to-MEG-a-lo-vi-rus), also know as CMV. Who knows if i don't have it already.... it is not normally tested in blood. Max a friend who is poz, whom i asked about this just asked me back "did you have your tests for toxoplasmosis and CMV???" i answered him... nope, i don't. SHIT!!! (sorry... i said i would moderate my vocabulary but this unexpected stuff drives me crazy with more and more anxiety.... and fear). Today in poz forums, i read this from a person who is living with aids and dealing with the consequences of CMV. You can find the story on Poz fourms in "Living with Hiv" part, mmm it is going to be kind of hard for you to find it... but don't worry, i can explain you. It is about a guy who is dating someone, both of them are poz, but the writer is deaf... i wasn't sure if it was because of hiv or not... and well... i found rude to ask. The thing is that this guy faces lot of troubles interacting with others, you know... to be able to communicate he has to read the lips or ask others to write things down in a peace of paper, that's actually not the problem, i mean we all human being find different ways to overcome our own limitations and i admire the way he has handled it... the problem is that others around him are not making things easier for him....which i hate to see... i mean we hiv+ people have our own troubles, why people don't understand or care about making our lives easier?. The whole story was kind of hard to me, when i was young better say a child i used to play with my mom i was blind and let her guide in the streets with my eyes closed... and i sort of know how it feels (off course it is not same being deaf than being blind.. but i sort of understand how it feels losing something you have had all your life and you took for granted as a part of yourself). I remember when my mom used to guide me... people gossiped, looked at me with sadness.. and stuff like that, everybody focus on the limitation and not in the potential a blind/deaf person yet has.... and even more sad is that people don't focus on their right to live full and happy lives, nor in our obligation to help them by making things easier... it is not an obligation by law, it is the inner obligation every single human being of helping a brother. I tried to think and visualize the way situations in his post happened....not like an story, but like if it was me the one facing it. Damn it was hard. :(

I got shocked... it is amazing how careless people can be and they way they can hurt others. At the same time i understand that dating someone with troubles might not be pleasant for everybody... but i mean... isn't love strong enough to face everything as some people say?... just wondering.

This got me thinking and thinking... and i ended up messaging many people from poz forums who are older than me in this path and asking them if the hearing lost of this guy was due to Hiv... i could not get much answers cause those i wrote were offline... i read some of the answers he got... two of them touched me a lot...

Then i found Max online and though "he should know"..yes he knew. He confirmed me the possibility of losing view and hearing due to CMV+HIV infection. It is something totally new for me.... i got impressed and scared... i could imagine... i mean i love music... what would happen if i can't hear it... or if i can't see?.. shit... how am i going to handle that :( music fills my soul....

I decided i would post about this, because i think some people might not realise how fragile our health is... and how it feels when you have troubles and try to fight them while others do not make it easier for us. A member of poz forums just replied me and told me that Hiv might not cause hearing loss (later on i got some urls about this specific issue i will post about later). He did confirm me that CMV can create blindness but it should not be a problem if i am under ARV therapy.

... i guess i want to read more and more about this in the following days... only facing the fear is how we know how to avoid this type of things... that's how we hiv+ live.. facing and overcoming fear... facing troubles and death and winning the battle. Still with it there is a part of what this person wrote at the end of his original post about loneliness and the time he had been fighting stigma related to hiv (over 20 years) to find now that he also has to deal with the careless way people treat deaf people... You know.. it is not just people face this kind of things, we all need to be more HUMAN.

Think about it. And if you want to read more about CMV and the blindness it may cause you can read CDC page about CMV or Allaboutvision.com page about CMV. Have a good night.

Labels: New life, same illness

3am and i just finished watching Norbit, WHAT A FUNNY MOVIE!!! Have a good day.... (finally going to bed)

Labels: New life

Today i was feeling ...same like yesterday... ok, lets face it... i am feeling down. It is a strange kind of depression... or fatigue... i mean i don't feel sad... but don't feel happy... i feel.. without a reason to live... without a reason to wake up in the morning and do something about my life... about me.

I have usually heard that for being depressed you have to feel sad... but i don't. I am not sad... i am just careless... without any motivation. Don't know why. Yeah... these two days have been those days when i feel too overwhelmed for all that is happening to me... plus being completely alone at home does not help me much. Mom came yesterday night and stayed here with me. Today she saw my face... she knows how i look like when i am unmotivated. She knows that sometimes i stay on my bed.. trying to sleep the whole day just not think about all that is going on around me... somehow wishing i would never have to wake up and face this all again and again... it is like the movie, i don't remember the name... when a guy wakes up everyday and he has to repeat same stuff again and again. Sometimes i feel the same, facing the same troubles again and again.

I am failing with my meds.... Yesterday i missed two doses of Aciclovir... i didn't mention but yesterday i was in bed until 5pm... so i missed the pills at 9am and 1pm. Today i woke up at 12am... i missed one doses.... well... right now that i am writing i just realised i missed the doses of 9pm. I totally forgot about it... it should not be a problem for me since it is meds for labial herpes, but if i would be in ARV... i would have been killing myself... i can't miss doses... shit!. I will take my acyclovir doses of midnight right now... now i know why my lips are not totally healed by now :(.

My mother also know that when i am down... i seat on a chair... and only think. And think and think and think... sometimes she calls me... but i don't hear her... when i think about all my troubles it is so overwhelming that it literally takes me out of the world... i can spend hours seated in a chair with my mind somewhere else.. in my mind... i think what can i do to fix my troubles, i sometimes remember the hard times i have had to face... i feel the fear... the fear i would fail in all this and i might not get over it... and sometimes in my mind i also dream... ¿how would have it been if i had a nice life? what others call normal life.

I have been checking jobs... but i don't feel i qualify for some of them, first because of the University degree... second because they request to be able to travel, sometimes abroad and now i cannot. Since being Hiv positive my chances of going abroad have been limited cause there are several countries like USA, Australia and others who have restrictions for Poz visitors. I heard even Russia has it... which is totally sad cause i really wanted to go there once again in my life. I want to see Moscow again.. the Kremlin, the thumb of the unknown soldier... the change of guards... take the metro... go to Propaganda club.

My mother is smart, when she sees i am flying.. she pulls me to the earth... today she told me "Juan carlos, come to help me cooking!". I don't like cooking and she knows it... i am better on the eating side of kitchen ;))) but today to cook with her was better than enclosing myself in the war inside my mind. It was ok, food was tasty... as she left she told me to do some other things and i realised i have wasted most of the two free days i had... doing nothing. Time just flew and i didn't know how... sometimes i go on my computer and play "Age of Empires" a strategy game that takes me up to 2 hours to finish... but since i rised the difficulty level from easy to hard... it is not fun anymore cause i loose very fast :( i will change the level to moderate. I got angry with Ricardini today, he is having birthday on weekend and invited me but as i will be working, i told him to go out tonight. he agreed, it was 2 days ago. He said he would also go with a friend of him who is coming from France. To say truth... i felt he was afraid of me. His friend didn't arrive... so tonight he told me "Oh i had forgotten about your invitation". I got angry. I was thinking in going out and seeing people, talk to someone... i needed to go out... i have been enclosed at home these two days... and he didn't care... off course, he said i was overreacting... i think it was stupid from me to think that a 24yo person would be able to understand how i feel. And no... i didn't go out after all... stayed home :(

Since the other day i think this song is somehow talking about myself...

4 Non Blondes - Drifting

What a wonderful hesitation
Who would bear to feel sorry for me
Dropped another pill just to calm me
Collapsed to my knees and fell fast into sleep

There I was drifting
Way out into the sunshine
Expecting to crash but Im tied to a string
Look at me Im a tangled puppet
I might be a mess but I sure can survive

Find myself awake counting sad days
1-2-3 thats too many for me
Dropped another pill just to find me
Reached for my hand
But it was already there

Then I started believin
That I fell out of a tiny raindrop
That lost its way when it decided to roam
Chasing me was a hungry dweller
But I had escaped it by pretending to die

Come follow me you wont expect the illusion
Youll see, its my imagination
Hand me your eyes
I will put them in front of mine
Youll see a little better
Youll see a little better

What a wonderful destination
Where I am now
I can no longer see
Dropped another pill just to kill me
Collapsed to my knees
And fell fast into sleep

There I was drifting
Way out into the sunshine
Expecting to crash but Im tiet to a string
Look at me Im a tangled puppet
I might be a mess but I sure can survive
But I had escaped it by pretending to die

In case you haven't heard this song you have to... it is so nice... the voice of Linda Perry is amazing... don't worry i am not trying to kill me... not now, not today... and hopefully not any time soon... i am just tired of fighting. None pays attention to my needs... the activits... the other day were saying they haven ensure viral load test for free for patients in the National Plan against Aids... and i am not into that plan because i am working and i have social security (that as you all know is plain bullshit). I have complained to them.. but none answers me ... i mean i am ecuadorian, i have hiv... I NEED THE FUCKING VIRAL LOAD TEST!!!!. Mother fuckers... but they just ignore me... they don't even answer me.... i don't understand, if they know Social Security Hospital does not give me full attention... ¿¿¿why the hell they sent me there??? ¿¿¿Only to die??? Only for them not to have ... ¿¿one weight more in their shoulders??... they really don't care if i live or not... sometimes i wish i could kill them. Speaking figurative off course... they are such a bunch of useless people ....

Well i have lot of reasons to feel tired and down.... Still with it when my mother left, i went to wash some stuff i had wanted to wash since the other day... my house is a mess... i want to fix it a bit...i feel like fixing at least the place where i live i am somehow fixing my world... just a little.. but that little makes a difference. I did it, then i collected and thrown away some useless papers i had on my desk. I created a free pop email account to gather all info about Hiv email lists i am subscribed... i wanted to do it since some time ago finally today i did it. i was surfing online and found this video.... made by Poz magazine delegates at IAS in Australia.

Regan Hofmann interviews Maura Elaripe Mea, the first HIV-positive woman to come forward publicly in her country. Through Igat Hope, the national network of people living with HIV/AIDS in PNG, Maura and others fight AIDS discrimination while spreading information and hope.

11 minutes. Transcript coming soon.

And after seeing that video i found a reason to stand up again.... i just wish changes in humanity would not be so slow.... sometimes i fear i might not be here when things really happen and get better. The only i can do by now is keep on trying... damn... there are so many things to do yet.... the time to start doing them is NOW.

I am still trying to find a new job, part time or full time... hope it happens soon and it happens for good. And i hope... i can somehow meet the Director of the National Plan against Aids in this country some day... i have so many things to tell her.... so many things... I am so furious inside with all of them and with all this useless people daring to call themselves activists... damn.... i want to kick some asses

ok, i better stop to think about them now, i am trying to watch the video and then i will eat something and see an Eddy Murphy movie "Norbit" to see if i can relax a bit... then to sleep...

Tomorrow will be a new better day. I really hope so.

Labels: New life, same illness

Today we had Holiday here, so glad i also have my free days. I have had some bad times at work lately, nothing to do with my bosses or co workers, but i am just getting tired of this work. I think i will try to move somewhere else. It is actually not easy decission as i have to take several things into account... moving to a new job means a high risk for me now.

The holiday was ok... i stayed in bed the whole day... simply had nothing to do... i wasn't aware i would be free on holiday and well.. all the people i knew had plans except me. Plus i am broken so... my bed was a good place to be today. I missed my times in Moscow, in days like this Valja always called me to go out and do something, or if not i was always walking around... thats the good part of living somewhere else... specially in Moscow, wherever you walk everything is totally new... and amazing... and beautiful. I miss those nights walking in the middle of the snow storms... seeing something new. None called me today... so i had nothing to do, i felt a bit lonely.

I don't blame anyone. I guess i need to make more and new friends, today i found out i had none to talk to... none to go out... my work and my schedules have slowly taken me apart from all the people i knew. Now, when they have plans, they don't count with me cause i am usually working... need to change my world in this part.

Anyways it was a calmed day, lonely calmed day.

By the way "Viva Guayaquil". :-/

Labels: New life, same illness

Artist: Frente! /Song: Bizarre Love Triangle /Country: Australia

Well... there are some things happening in my life that i sometimes cannot believe. Sometimes things happen and i think... "oh no.. here we go again". Not all things are bad... but believe me the coincidences today has been too obvious.

First of all... today i took the tests... finally. I woke up 6.15am and managed to be at Hospital at 7.15am. I was done by 8.45am. The took 3 bottles of blood from me... i though i would fade away... I was a bit nervous cause there were couple of new and young Drs in the laboratory taking samples... i didn't want to be with any of them... they would be surprised and afraid of taking blood sample to an Hiv+ person.... i didn't want to scare anyone today... the one who was scared was me. I hate needles. They handed me my sample of blood again... to take to the Dr. Villao's office... i don't like it... it is not scientifically correct... but come on, i am in the third world... who cares what is scientifically correct over here??

I went to try to ask for my prescriptions... the usual answer. NOTHING. I took the chance to go to dermatologist to ask him for some prescription for my labial issue. I feel it is growing instead of disappearing... he prescribed me some pills (Aciclovir x 30u). As i had no official appointment with him today he said i could not request the meds at Hospital but i had to buy them outside ... no problem, perhaps they didn't have them at Hospital anyways. I am taking a pill every 4 hours.

Met some patients at Hospital who also meet my Dr. said hi to them. Other's were nervous when they saw me... but when i greeted a Hiv+ patient, they seemed to feel more comfortable with my presence... we are all involved in so much fear......

While i was leaving hospital the girl from Guayaquil bank called me... i hanged off the phone call by mistake ...hehehehehe!!. I answered her and told her i had taken a decision... i would sign the docs for the payment agreement and cancel the credit card... . Well... i didn't think much about it yesterday.... i knew there was not much i could do... i usually would have asked my mother and sister for advice.. but since we argued i had to think about it alone. I always fear to fail... and more after diagnosed... well... i saw no way out so they had me in their hands. I signed the docs today, i will have to pay 42 usd next month and then i will pay 39 usd during 24 months.. aha... it is going to be long. Tonight i got home and my mother had left me on my desk a letter from judge of civil affairs.... another credit card is establishing a demand on me. I freaked out... SHIT!! Not now!!. As usual i cannot face these things right now because of the terror attack they give me... i didn't even read the letter... i haven't... i called my mother cause she is a lawyer... if i have to go to court.. she will represent me. I talked to her and she told me it is usual procedure... there is no prison for debts in penal code. Ufff....at least. I don't want to go to jail these days... not now.... not after all this. I don't even want to think about it.

Perhaps tomorrow i will read that letter... today i don't feel ready to do it.

I have been fighting by email with the people of the coalition of people living with Aids, with the people running the country mechanism of control for the EU/Global Fund and people running the plan against hiv/aids...... why? because few days ago this email was being delivered all over the city:

"A big favour, forward this email to as many people as you can so they can see the pics of this bastard who destroyed the life of my friend and contagious her with Aids... so we could perhaps unable this asshole to keep on contagious people..

ANDRES EDUARDO LAVAYEN CARMINIANI

This is a monster with a disturbed mind who is contagious every person who is having sex with him because he is bisexual!!! he is a carrier of Hiv (Aids) since long time ago.... if you see him SCAPE!!! because your life is in danger, he looks like a normal guy but his only intention is to destroy and transmit this maquiavelus virus to all the people he can.

Lets help us!!! Andrea Macias is one of the victims... and you or one of your loved ones could be the next.

Send this email to all your contacts so he cannot do what he wants, and this mortal chain stops here!!

He is among us, he lives here in Guayaquil and is a monster under a human skin."

They sent 2 clear pictures of the person, but i just deleted them cause if i publish them i would be contributing to the damage caused to this person.

I am not exaggerating, this is literally what the sender wrote. I could track the sending email, this was sent by a guy working for Government taxes office. This email was widely spread in the city, my boss got it and next day Myriam posted it in the coalition email website. The fight i am having with them is because none has said a word.... none of the so called "leaders" ever cared... I don't know this guy, nor know if he is guilty or not but this is not the right way to solve this kind of things, if anyone has a complain... establish a demand, but don't send stupid emails just like that because it is creating more pressure on us who are not guilty of anything. I have fought... fought with the president of the coalition, fought with the president of MCP for the EU (a Dr from Health Ministry)... i have fought to every possible person who should be responsible to SAY something about this and is not doing a single shit. I put in doubt their motivation to fight against Hiv and the effectivity of their work... because it is truth, i doubt of them. I know this is not the end of the world, but come on... you see.. he even sent pics of this guy... what if this guy in the pic is not Hiv+?? what if it is only gossips?? what if this guy in the pics is Hiv+ but he didn't know so he infected that girl.... what if he knew and he did it careless....what will happen with t he rest of us who are not guilty for this guy actions???. If he is guilty... send him to jail. BUT send him to jail... not send US to jail with him too.

I feel these leaders in the fight against Hiv are USELESS. And i have said it to them.... i guess i am not much loved in the coalition of people living with Aids, nor in the MCP for the EU at this time. I just hope some truth in their faces will kick their asses.

Well.. now lets go to the coincidences that named this blog.

Yesterday night i was downtown and met someone, interesting girl... mmm... not so much my style but not so bad either...we started to talk and wow... she had a brain!! (i am NOT saying girls do not have brains, i know most of them have.... i just mean that i have met few who do not have... just to clarify). Well we talked and talked and talked and i asked her what she did for living and she told me "I am coordinator in a medical trial". "wow... really?" - I said.... come on... a scientist girl!!! isn't it exciting???.... and sexy!!!. I asked her what kind of trial was that and she answered "We are making a trial with people in risk of infection of Hiv and giving them some doses of Truvada one of the ARVs to see its efficacy as Pre Exposure Prophylaxis". "Oh God.... here we go again..." i though. I don't know why i am calling all Hiv workers, researchers and all that people... i am just meeting them everywhere. Well.. the girl is interesting, we talked more and it happens i have good knowledge about the current research for the Hiv vaccine so i made some questions... i tried not to seem to have "much" knowledge cause that would have disclosed me as Hiv+ (no normal people know as much of Hiv as Hiv+ patients). Not sure if i put myself on evidence.... i hope i did not.

Second coincidence happened today at work, i was preparing an invoice for a client and another client requested a product i was preparing the invoice and rised my face to look at the client..... it was Jorge from Care Ecuador, the man i have met twice while delivering my testimony.... Oh God! I got afraid.... he is a cool man, he is friendly, i mean i smiled and said "heeey!!! so cool to see you!!!". He was also surprised, i was yet nervous.... i mean i was at work... i knew he would not put me in evidence, but i was nervous anyways... fears and more fears.... i hate them. He said we were meant to meet cause today he was thinking of me and remembered he had not sent me the Ecuadorian Plan to fight Aids developed and being implemented in this country. So i hope he will cause it is the second time he said so. I haven't finished reading the file Ma Isabel from Care sent me, i am in the page 11 from 26. You see... coincidences happen everywhere....

Labels: New life, same illness

The bitch from Guayaquil Bank has been calling me since 8am to my mobile and to my houses insistently.... fucking bitch!! She does not let me sleep. I just sent her an email saying i might pay her (to make her suffer...). I didn't answer her the phone.. it is so annoying having them calling me so early.. come on i work on middday.. this is like calling me at 4am. Well she has me awaken now.. but i will not answer her. I'm a rebel.

Yesterday i saw one of the most beautiful poz woman i have seen since diagnosed: Regan Hoffmann

Regan is Poz Editor in Chief and also member of the NAPLWA (National Association of People Living with Aids). The girl has all... she is smart, she is professional, she is beautiful and she has a big heart. Damn.... i found someone i would like to marry....

I was actually surprised whens he posted her pic on her blog yesterday, she is right now in Hanoi, Vietnam in a sponsored trip of three weeks meeting Asia leaders to promote initiatives to fight AIDS in the region. I say i was surprised not because she placed her pic online but to see how good looking she is. I mean... i know some of us poz are very handsome ;) but never knew she was SO beautiful.... WOW!!. Ok ok ok... the girl is really beautiful i admit it, it impressed me. Among the comments in her Blog there was something very interesting that someone else posted "It's really encouraging to see you for us newly diagnosed".

Yes, it is truth. It is encouraging for each one of us to see that some people are still looking great after diagnosed, showing her lives are not over and won't be. Hey... perhaps i should keep on taking care of my image more and more... one day i would like someone to say "wow JuanCa you are so hot looking!!.. it is unbelievable you have Hiv". Hey... i had already heard that!!! the last part of the phrase... not the first one :( .... HEHEHEHE!!!

Regan's smile makes me happy. I want to smile like that today.

If you want to read more about Regan 's story and her trip to Asia together with the great work she is doing advocating for people's right and freedom from stigma check out Regan's HIV Blog. She is such a great woman. Have a good day.

Labels: New life, same illness

Short post from home to tell you that .... i have only 0.17 usd in my pocket and have only green bananas to eat tonight (2), only 0.2usd in my mobile (that i will use to post this in here) and my nausea is mostly gone (not my troubles for breathing..) But still with it... still with all the shitty life i am having... good things happen again. I guess God knows that when i say "this is too much" it really means TOO MUCH.

I called my sister, she will lend me the money for the credit card, as i have no money to go to her work to pick it up (bus costs 0.50usd two ways.... money i don't have). She will save the money in my credit card tomorrow. I asked her how much could she lend me... she said.. "make it a round number". I said "87??". She said.. "no...". I told her "90?"... she told me "nooo... make it a ROUND NUMBER"... mmmmm I said "is it more than 90?". She said "Yes, it is". "Ohh you mean 100 usd?" - I said. "Aha, that's right!" - She answered me. She is a great sister. It feels ashame to be needing money from others... but sometimes life put us in situations that are hard to explain. A friend, offered me to lend me money some time ago, Ivan, thanks for that nice gesture. Dody did same offer when i was struggling financially in Moscow. I didn't accept it any of both offers and I won't accept any offer of that type, but it was a nice gesture from them. It might sound silly but i think that... if God made all this trouble (or let it happen)... he will have to find a way to take me out of here. I only accept money from my mother and sister because they are my family and are part of me.

Once more don't worry about me, i am sometimes down.. but i am strong. I stand up again... and keep on walking, i learnt it from Russians... "you just keep on walking.. keep on trying until it eventually works out" Those were Masha Neizvestnaya's words (my MCP in Russian MC) i bet she never knew how much her words meant for me in that time and still mean today. I do what i learnt i keep on walking.

The other miracle. I was talking to my mother on the phone (after talking to my sister) and she told me: "In the afternoon the neighbours gave me some doc saying that water company has reconnected water in our house". I though "what?????"... I haven't paid... they requested me 300usd payment for the reconnection and then i would have to sign an agreement for monthly payments.. and as it is obvious.. i can't afford that. I have to admit...i though "God made a miracle and somoene else came and paid our debt!!! an angel!!!". My mother told me: "Neighbours say that the whole neighborhood has been complaining about the water bills and have made some political pressure. It seems that lead to water company to reconnect all houses that were without water .... including ours". WOW!!!!... same miracle in a different way :) HAHAHAHA!!!! OK, He (God) knows how to surprise me :)))). So it seems i have water now!!! (i live in a third floor and the bomb for water was disconnected since we got water cut but at least i can just go to the lowest level of the house and pick water up to my place!!!).

This is a great ending for a hard day.... Hey you above... thanks for making it happen... thanks for showing me you are still out there... thinking of me. I was in need of some help tonight.. thanks for the big helping hand...thank you. thanks for the sign showing it all will eventuall work out well and making me feel i am not alone. I am not alone.

Labels: New life, same illness

Artist: Luz Casal /Song: Piensa en mi /Country: Spain

Gotta work today from 10am to 10pm (well... just until 9pm as i made an arrangement with a co worker). Got flu somewhere i don't know... it is just starting... i was getting worried why i was having troubles to breathe lately... but yesterday it started officially.. flu. Second time in four months, not so bad huh?

Wish you all an amazing day

Labels: New life, same illness

... i hated this day. I'm just so frustrated at this very moment....

I couldn't take the tests today morning i was very tired... i woke up at 6am but went back to sleep, mother woke me up at 7am.. but i fallen slept again.... i woke up 7.40am i got ready and managed to be there at 8.44am. They didn't allow me to take the tests cause they only receive samples from 7am to 8.30am. Mother fuckers!!!. I know they have schedule but come on this is a huge hospital how come they only receive samples an hour and a half per day??? plus i cannot take the tests any other day but next thursday...that means another week. As it is not their health they don't care.... i wanted to scream and complain saying "yeah but you know i am ill i cannot be waking up so early just to come over here while it is yet freezing i could get pneumonia!!!"... although they would not understand.. they don't care come on.. who i am trying to lie? they don't care about what happens to me. The guard even told me... "don't try to come in because the Dr came out few mins ago and complained with those who were left telling them they should be here at 7am not at 8am". I was so near to tell him....what i just mentioned... but i preferred to shut up... welcome to the fucking health system juan carlos!! Hope you die soon!!! they won't notice it.

Perhaps i should have told the guard "You know Mr?.... i was changing the world yesterday and talking to others how is to live with Hiv and i ended up so tired that i could not wake up so early today... i DID CHANGE THE WORLD... what have you done recently that is just a bit near to that???? would you please let me in???" i am sure he would say "you changed the world?? so what???... NO you cannot come in!!!". I hate to ask people to break their rules and "their organisation" but just want to point this.. have you realised they are so organised and strict with their rules when it comes to prevent people to access health care?? why they are not so organised and strict when it comes to the point of delivering my meds and taking my tests??? COME ON MOTHER FUCKERS IT IS NOT A FLU TESTS... THESE TESTS ARE ABOUT MY LIFE!!!!!! CAN YOU MAKE A FUCKING EXCEPTION????!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I told the guard... almost begging him to let me in.... "you know... i have to take a CD4 test.... :(" and he replied to me "uuuuuu!!!! even worst!!! you cannot come in, you have to come next week but earlier... last week there was not reactives so none took the tests..... come next week". In days like today... i wish i could die fast.... not to see how careless people are when it refers to my health.... to my live... to my survival.... I am sorry but sometimes i would like to end up with all this just at once... once for all.

It was a bad day... today was a bad day....

Today i killed love... finally... after three years of dearly loving someone.. who never ever loved me.. today i did something that hurt me... deeply.. but that i knew it would finally end up with the love i have had for this person these past three years.... nothing worst than loving someone who few cares about you... I loved her so much that i even pardon her the fact that she perhaps was the person who infected me with Hiv.... i though we would be together... i hoped that one day she would realise how sincere my love was and that she would one day wake up and say "hey!! i love you too... i just didn't notice it before". Although shit like that does not happen... so today i did it. I killed my love for her.... it was sort of suicide.... but it was good, better than keep on suffering and loving her without hope....

At the end of what happened... i saw it with my eyes... how she didn't really loved me... how she treats me different way.... and i hated her... i found her disgusting.... i wanted to complain and tell her... "you know i have been loving you the past three years every single day... how come you never valued it? i hate you!!!" While we were coming home.. she asked why i was so quiet.. i said "i have always been a quiet guy". She said "no, you have always been smart and with good conversation..." i replied "no, i have always considered myself a quiet guy... that's how i am" I remained quiet not to explode... she does not know today i killed the love i had for her.... i felt so silly, so stupid... i should have done it 3 years ago.... fuck!

One of the worst things is that i still have to be her friend.... i cannot just go out and disappear.... i have always been there for the people who has been important for me.. and i can't change it right now... it is just the way i am.... but i will try not to find love in her again... I dedicate this song for her.

Singer: Stacie Orrico - Lyrics : I'm Not Missing You

Oh, Oh
I'm not missing you
Been through just about everything that I could go through
When it comes to relationships
Don't know what I was missing or why I ain't listen
When I told myself that was it
Now here I go, hurt again
Cause of my curiousity
Now that it's over What else could it be
He decides to cheat

I made a promise never to settle
Why didn't I keep it?
Cause I hated the heartbreak
Crying and cheating, the fooling around

CHORUS
(But) I'm not missing you
I'm not going through the motions
Waiting and hoping you call me
I'm not missing you
You might have had me open
But I must be going because
I got life to do
I know I'm usually hanging on
I used to hate to see you gone
But this time it's different
I don't even feel the distance
I'm not missing
I'm not missing you

It's a shame in a way cause
I feel that I may not ever find the right one for me
Did I leave him, is he right in front of my face or
Will my true love ever be?
Why would I go on a search again
When I know what the end will be
What good is love when it keeps on hurting me?

I made a promise never to settle
Why didn't I keep it?
Cause I hated the heartbreak
Crying and cheating, the fooling around

Chorus x 2

No I can't be with you cause I'm scared
Felt like I was falling when you left me
I can't keep going through life
Unaware of what I'm missing
And the person I could be
Love's good when it's right
And bad when it's left in your memory
All the times I let you down
I guess love would be nice for someone else's life
(But) I'm not missing you

I'm not going through the motions
Waiting and hoping you call me
I'm not missing you
You might have had me open
But I must be going because
I got life to do
I know I'm usually hanging on
I used to hate to see you gone (I used to hate it)
Oh different, oh feel the distance
I'm not missing
I'm not missing you
I'm not going through the motions
Waiting and hoping you call me (knockin' at my door)
You might have had me open
But I must be going because (it's the best day of my life)
I know I'm usually hanging on
I used to hate to see you gone
Oh different, feel the distance
I'm not missing
I'm not missing you I'm not missing you (oh baby)
I'm not missing you I'm so over you
It ain't even a problem

Labels: New life

HI, i am happy today it was a great day , Maximiliano picked me 7.30am then we met Claudia and Monika. Maximiliano is Argentinian, i forgot to mention it yesterday, he is really a cool guy, we were laughing all the way until Palenque, even though he's got a difficult accent for me in Spanish.. but it was cool to talk to him. Monika in case i didn't mention it, is from Germany, she is coordinating the sensibility trainings in Redima Health Care Facilities.

The way until Palenque is a bit long, 2h far is not so fast even though we made 1h30 because Monika, as many Germans, has Schumacher's spirit inside LOL. We were talking during the trip it was cool, Monika, Maxi and Claudia get along quite well.. it was such a great pleasure to go there with them.

This time i didn't facilitate, i was more on the listening side because Max was facilitating with Claudia, it was funny... first time i listen an Argentinian facilitating, they have some funny expressions . Palenque is very rural zone, along the way there we found lot of farms, cows, chickens, horses, we often had to stop the car to let the cows cross the path!!! (and we almost hit them couple of times cause Monika was driving quite fast .. that was... like a real car race!!) Another cool thing of the trip was that I could see lot of rice plantations, i have always though they look nice... like very well organised...I could also see some very original country side houses made of wood. I didn't see them since when i was a child, it was really cool to see these people keep their costumes with t he difference that now they have electricity what they didn't have when i was a child (Oh God... i am becoming so old... i even have stories to tell!!!).

Once arriving to Palenque we were glad to find a small quiet and very clean town. Like many small towns in Ecuador they have a town centre where the most important buildings are placed. The church, the Major's office, the police department, the park and also the Hospital.

The Hospital is where we had to our training today, i was very pleased to see a very nice and clean building with several facilities one would not expect in the country side.. they even had surgery room... isn't it great? I really think Catholic Church did a great job with this health care facilities, they are really great and a big help for the communities where they are placed. Well, here some pics of Palengue... enjoy it!

The place is very clean and calmed, you can see several cars and mono taxis by the way... people are no longer using horses in the city but bicycles too.

This Hospital "Father Miguel Sesma" receives people not only from Palenque but from other small communes placed several kilometres far... one of the delegates to the session today came from a community placed an hour far from Palenque.

Off course, it was the first time all of us (except Monika) were in Palenque, so we were taking pics like real tourists .

In this pic you can see Claudia and Maxi, believe me Palenque is such a calmed quiet place... one feels like staying there, they only problem i heard is that they don't have very good internet connection... buu :(

Arriving there we met the Director of the Hospital, Mayte from Spain, she is a mature woman in charge that everything works smoothly, it is so cool to see so many foreigners working to help people in Ecuador, they are so open and friendly, it is a rewarding experience.

About the sessions, today it was all cool, there were only 10 delegates because the Hospital had to keep on working, but it was cool, mostly people from administrative departments, some nurses and a Dr. Among nurses there was a Puerto Rican woman :), wow.... i wasn't expecting so many foreigners in such small rural place. Training was fine, they had been trained before on Hiv and for what refers to medical knowledge they were quite good.

Dr Walter had worked in Guayaquil in a centre of scientific research for Hiv (I didn't know there was such a thing in this country.... amazing!!). He had trained most of workers at hospital about Hiv and some others health promoters they train from far away communities. He has done a great job!!!.

Max did a good job relaxing people and helping them to break the ice and to participate in the sessions
Well... there is no much to say about the training itself, i mean it was really fine... but it has a reason... In Palenque there are not Hiv cases known at this time. They had a case but from a far away community.

The lack of Hiv cases is actually due to several situations... not all of them good... first of all... there has not been place in Palenque offering tests for Hiv before... so perhaps the lack of cases is because none has ever test. 25 years after the illness started to spread around the world... there are still places unable to fight it... OH MY GOD!!!.

They have never ever seen a positive person, therefore they were very open to participate feeling like "cool lets know about this, anyways there is none infected nearby". When my time arrived i asked them to seat in a circle with me and i asked them what was their biggest fear about Hiv. Most common answers were:

• The risk of infecting others


• Discrimination I will face


• Lack of medicines


• How long i will live


• Fear of a pity death

I thanked them all for their participation and gave the hand to each one of them... and then i seated and told them..."by the way, you said none except Dr. Walter had ever seen a seropositive person, right?... well it's not like that anymore... because i am seropositive, i am living with Hiv and right now you have seen with your eyes a person living with Hiv and have touched him when giving me your hands". Needles to say they were quite surprised.... but it was hard... while saying all this the muscles of my face reacted... i felt like crying... my eyes got wet... my face... i could not control it... the muscles started to contract and i felt like i would cry in that specific moment.... Not sure if you understand me... it is when your face starts to contract and get like this .

I don't know if it is anxiety, or simply sadness... but i hate it. I have to fight those moments not to cry.... emotional instability is one of the things Hiv has given me since it moved to live with me.. and i don't like it. To cry involuntary and without control is not nice :((( and worst in front of others.... damn!!.

Well.. i sort of controlled myself and didn't really cried, i kept on talking, telling my story, how things happened, talking about their fears and answering from my point of view... i told them about what happened to my dermatologist, i told them about the need of preparing to give a hand to those in need...

Situation in Palenque might seem good from distance but it is actually not so much... being a small town Palenque's inhabitants still suffer of lack of education and paradigms... so when then first cases of Hiv will be detected... those people will have a hard time... really hard. I asked people in the Hospital to stand in their defence.. if in my city (the biggest of this country) we are still having people trying to expels Hiv+ kids from schools.. only because of their stupid fears.... i cannot imagine how many things can happen in that small town. Also in these communities we still have "parteras", they are women who assist other women to deliver children at their homes.. using old and insecure methods.. sometimes putting mothers and sons in risk... now imagine if one of those mothers is Hiv+.... there would not be chance to protect the child in case of such deliverance.

Not sure if you all know this but i guess i have to tell you. There is a thing called "Vertical transmission". Vertical transmission is when Hiv is transmitted from mother to child during pregnancy or deliverance. When there is a Hiv+ mother, there is a protocol that allow her to deliver her son with only a 2% risk for the child to be Hiv infected, in other countries they even have said they could reduce it to zero. The protocol is composed by some steps, like for example the mother have to take ARV meds during all pregnancy, mother cannot deliver son naturally... but with surgery, in that way we avoid the child to touch mother's blood or internal fluids in his way out during deliverance. Once the child is borned, mother cannot breast feed her son... if she does it, she would infect him with Hiv, we use supplements for maternal milk. And finally, after deliverance, the newly borned receives ARV during a period of time... usually a month to try to eradicate any possibility of infection. After the whole protocol have been accomplished children are tested for Hiv at third month if i am not wrong, if they test negative (like most of the cases following this protocol) the test is considered conclusive and we can happily say the child is Hiv-.

It is not an easy thing to do... but it is very important that mother's get tested for Hiv so we can protect their child, this is going to be one of the first points this hospital will work on. These people working here will have a big work to do... and i hope in God they will do it right, i saw them today... they are really a great bunch of people... i know they will help other's in need.

After finishing the trainings we took some time to joke.. specially Maxi because it seems some Argentinian guys are a bit metro (metrosexuals). He was talking about his skin face and how our weather has affected it. LOL... here you can see him watching himself on the mirror of Monika's car LOL :)

I think we really did a good job today. Now i am only missing a testimony, the last one.

I also met people from Care, we greeted shortly cause they were in Palenque in a hurry for some short and fast meetings before travelling to Vinces another town nearby. Well... here some pics after the training.

In the first pic you can see Maxi and Claudia.

In the second pic you can see Monika (back), Mayte from Spain and Maxi (Argentinian).

Afterward and once arriving to Guayaquil i had to pick up a folder i had left forgotten and then talked to my sister to meet in the International Book Exposition in Guayaquil, it was very nice, i met one of the AIESEC advisors at the entrance. There were several expositions and forums about different type of books and other authors, here some pics.

Well i have some pics about this but i am feeling very tired right now... 1.15am here i want to go to sleep right now. Tomorrow i will take my tests at 6.30am... i hope to have them done early so i can come back home and sleep a bit more. Dr requested me following tests

1. Hemogram


2. Glycemy


3. Cholesterol


4. Triglycerides


5. TGB/TBP


6. HCV test


7. TORCH


8. VDRL


9. CD4

Most of the tests are to identify STD (sexual transmitted diseases) and also to see my other indicators of health. I hope they withdraw blood enough for all tests tomorrow... and don't leave my body empty :) Ok--- going to sleep right now.. i feel very sleepy.

Labels: New life, same illness

Artist: Kudai /Song: Dejame escapar /Country: Chile/Ecuador :)

Tomorrow i will have my third testimony, this time it is going to be in Palenque... a small town two hours far from my city. I have never ever been there... i am glad i am going, i like to travel (and plan to take lot of pics). Tomorrow i will finally meet Maximiliano Noboa, he is a young guy (i think my age) who is the director of Vihda Foundation, Javico knows him and said he is quite a cool guy, i have just seen Maximiliano couple of times when attending appointments with Claudia, but we have never talked, tomorrow he is picking me up then we will pick up the rest of facis and travel.

This sounds silly but i cannot find proper clothe for tomorrow... i know i said i never worried about appearance, but i want to look great in these sessions.... i want to look healthy, well dressed, like a great guy... because that's exactly what they are not expecting from a seropositive person. Perhaps that's why they get so surprised when i tell them my story....that together with my red hair which make them think i am rich guy or descendant of foreigners (speaking about paradigms of people).

I just discover since yesterday and today that my life is not going so well... and it has nothing to do with Hiv, i was reflecting and i realised i have done some stupid things that makes me dislike myself right now. Don't worry none was in danger... just me. Since some time i am thinking there is a specific point we all fail to analyse about seropositive people.... what lead them to risky behaviours?

It is clear there are no groups of risks... but people infected most of the time had one or several risky behaviours... that's the real entry for the infection, behaviours... can be addictions, lack of responsibility, promiscuity, alcohol abuse, negligence at the moment of using protection in sexual activities, and many other things. Although the real point would be... what lead people to develop risky behaviours?. Before speaking about those answers... i think i have to clarify that those risky behaviours present in people who became Hiv infected are ALSO PRESENT in people who are not infected with Hiv ...yet. So that's a point where we all have to work on. Now about the reasons that lead people to develop risky behaviorus...there are different answers... low self steem, family problems, psychological or sexual abuse in the past, feeling lost in life or careless (depression), lack of education and many other things.... the thing is... after being diagnosed Hiv, do these things get solved automatically?? NO. It does not happen.

I think that's why people have so many troubles sticking to meds and remaining alive... because even though they change their behaviours the most they can.... the basic wrong issue that lead them to those risky behaviours... is not solved yet. You can't kill a tree only by cutting it... you have to take off the roots otherwise the tree might grow again. I am not the exception... and i feel bad about it. I think i have to re plan my life... there are many things i have asked my family to help me... but i am a 30 years old guy i should solve them by myself.. which would increase the difficulties in my life... and the stress.. but it is a way to avoid listening complains from others saying "remember the way we help you". I will work about it and i will work in solving my wrong areas/issues....which is actually the hardest thing to do... i can change my food... but what about changing issues that bothered my life since xx years old? issues i might not even recognise right now but that unconsciously lead me to risky/thoughtless behaviours that took me here.... not an easy thing to solve.

I am in contact with a person from Care Ecuador, she sent me file of the project they are developing and asked me to check it and give her inputs, 26 pages... i will have lot of fun reading... even though for the first quick view... i never saw measurable numbers... i mean they want to help to reduce stigma... how do they know if it works if they don't have numbers? They are working geographically as these medical facilities are placed in specific areas they should make a census and then a survey to be filled by inhabitants... at the end of the project they should repeat the survey to see if their project was successful. I don't know why people fail in such small details. I have always been a number's lover... they helped me a lot while MCVP Exchange and Finance in Ecuador and while working as account manager in a Market research company. Well... i will read it all tomorrow and i will let you know my opinion. They will also send me the full file of the Plan against AIDS developed in Ecuador.... lets see what surprise i get from there.

My laptop died.... one more time.... that sucks!!! I still miss 100usd to pay it, and i cannot give it back because my older niece (9 years old) burned the cover with a candle...... so for some reason that laptop should be mine huh? i think i will send it to be repaired to a professional place.... mmmm... how will i pay that?... no... i better ask my sister to check it first... at least she does it for free.

Well... nothing else to talk about right now, i will try to blog tomorrow night and post pics. Have a good night 1.20am here... i need to look for nicer clothe.. and wake up tomorrow 6am to get shaved and dressed and look like a movie star :) Max picks me up at 7.30am... i should do something not to sleep so late at night.

Labels: New life, same illness

Hi, i have been trying to write this since 45min ago from this shitty laptop.... on sunday i installed an EVDO internet software but it seems i did more bad than any good to this small shit. Well... shortly...

Today i went to the Hospital to meet my dermatologist, basically to do a follow up on the dandruff treatment and i am taking and because i mentioned him 3 years ago i had some small eruptions in my leg... i had only one at beginning now they are three. Not really noticeable but since HIV gives the chance to develop cancer in different parts of the body i though it could be Karposi's Sarcoma or cancer in my skin.

Dr. checked me again and he said it was not cancer at all.... well... i guess once being positive one start thinking negative.... if that makes any sense. He said i had something with an strange name i don't remember but it was nothing important, he prescribed some cream which should be able to solve it. He also asked me about my status and my CD4 (494) and all that... he is a man with good knowledge, he is not even afraid of touching me, that's good. He was with another Dr. and they started to comment about some patient they saw last Friday who had a CD4 count of 12... yes only 12... they said this man was a believer and was praying constantly to get better... i though... "that's cool i am also a believer" then the other Dr. said "it is impossible this man to increase his CD4, quite difficult...." by that time i was about to ask them why my face gets red sometimes.... but as soon as i heard this Dr. saying such stuff.... i preferred to remain quiet... i felt afraid and ashamed.... it was not about me... but it was about me. I mean... it was not about me personally... but it was about a seropositive person...so at the end it was about me too.... people and specially Drs tend to forget we have feelings... and when they say "that seropositive is gonna die" they are saying the same to all of us..... a person is not condemned to die just because he/she is positive.... there are lot of people who live over 20 years after their diagnosis...

I though in speaking and saying... "excuse Dr. but you are wrong... this man can increase his CD4 if he eat well and follow treatment"....but i was too tired to speak up again.... i was even anxious and afraid before meeting them... Drs usually do not simulate their dislikes to seropositive people.... they who are supposed to be educated about this. I was tired to fight today so i decided to shut up and leave, i saved my questions for myself.... and went to pick up my prescriptions, they gave me 3 prescriptions and i had 2 from June from my ID Dr ..you know vitamins and stuff like that... i went there to pick up these 5 prescriptions and they gave me only ONE.

As usual they don't have all the others.... in fact, the guy serving me should have printed the other 4 prescriptions and handed them to me... but he printed only 3... and broke the paper Dr gave me.... careless..... i know how many prescriptions there were cause i counted them before going to ask for them... i knew he did it wrong, i took my meds, and the three prescriptions... and left... didn't complain.... what for? anyways i knew the bastard forgot to print the loratadine prescription... and well.. they don't have it anyways.... so i left.

I am not up to complaining nor fighting today.... perhaps i am getting into their system ..... the system when things are not right but people say nothing.... today i felt tired of complaining and fighting and seeing that none cares...... sad but true.

i will try next time something happens i will say something... even when we feel tired... we have to fight for things to be done correctly.... otherwise this world will never change. Today i took vacations of it.. hope someone else did it right for me...so i would know i am not alone claiming for my rights and for my life.

Labels: New life, same illness

Artist: Avril Lavigne /Song: Keep holding on /Country: Canada

Well, this time the testimony went actually fine, this health care facility is placed in Perimetral way, which is a way going out of the city, the place itself is not considered exactly safe, but a car picked me up to take me there along with Claudia and Ericka (the pretty but silly psycho). Together with us there was people from Care Ecuador: Jorge and Ma. Isabel. Care is one of the organisations running this project that will provide Hiv testing and counselling to pregnant mothers and communities in different parts of the country.

This specific team working in this facility was much more knowledgeable about Hiv and Aids, something that surprised me. Still with it i have noticed that for most of the people around the world is hard to accept the truth that HIV is not a virus easily transmissible, in fact it is quite fragile, you have to have specific risky behaviour to get infected... and as sex is part of human nature... that's the way most of the people gets infected. Another thing it is hard to accept for people is that patients living with Hiv /Aids can really be a normal person, i mean we can run, sing, laugh, cry, work, rest, fight, dance, anything just like everyone else. I would say that from all my friends the only person who treats me like a normal human being is Diana Patricia, i don't think our friendship has changed since she knew about my diagnosis, in fact she has done and effort to remain close to me... something none else has done it and i appreciate because she has been a big help for taking me out of the prison i created for myself.

Still with all the good knowledge these people had, still they cried while doing the sessions, specially when there was one simulation that some of them would be diagnosed of HIV+... all those diagnosed felt depressed... a woman cried... it was not real but still it was a big shock for them and for me... I mean they were crying because of being diagnosed the way i was.... showing clearly they would not like to be on my shoes... off course none would like to, but well.. it is sad when people react like that to what i am right now.... and i can't change it.

When i disclosed my status, everybody was surprised, even people from Care Ecuador.... none ever imagine a person living with Hiv can look so fine. This time was a bit better, people were much more opened to what happen to me... it was cool. By the way, something i have realised is that since last week i have started to take the complex b and vitamin c (acid ascorbic) my body is changing a bit... my mood is high, i am much happier than before, not so tired, my hair is shinning (my mother pointed it to me... i didn't notice it) and she even said i was looking healthier than ever :). Another change is that i am so hungry these days... i could eat a cow by myself.... the problem is that i have lack of money so i eat just the necessary... thats bad... sometimes i would desire to eat and eat and eat but well... by other hand i am somehow keeping my weight controlled.

At the end of my testimony several people came to congratulated me and thank me for sharing my story... they even asked me my phone number... some others told me they had sons or relatives they wanted me to meet.... i mean that's fine i am very friendly guy... i just don't want to feel like a "hiv prevention human advertisement" that's not nice. I am just a normal human being, i think people fail to notice it... they keep on thinking "oh he is such a brave guy, he might die soon but he is still speaking about it so freely"... which is silly. I think people have no clear that HIV/AIDS DOES NOT DEFINE MY LIFE NOR WHO I AM. It also does not define anyone else. Hiv is just a small part of my life, it is something that happened to me like the flu i had three years ago or like the accident i had in Moscow two weeks before leaving... it is something that happened, but didn't shape the way i am.. or at least not much. I know i have changed... but slowly i am back to be myself, now i am smiling and laughing more... not much frustration moments, nor so much anger... nor crying nowadays :)))))) i am actually pretty fine... except for the crappy health care i am receiving.

At the end of the training i had the chance to talk to the people working for CARE and asking them some stuff about the plan to fight Aids in here and well... like i said before.. it is a mess... like a knot very well done .... so it is a hard to solve thing. I will try to see if i can get more involved in something ... so i can perhaps do something to solve this knot... even though sometimes i get just tired of reading all the fights of these people and the way they serve their own interests more than country goals.

My mother found out a place where they offered to do "spiritual healing session" that might cure me from Hiv or make the virus go back ....bullshit.

I hate these people playing games with the hope of patients and relatives.. specially if those relatives are my mother and sister.... but i somehow understand them... i guess our families would like to try any single thing that anyone offers saying it will cure hiv/aids... just because they want to send the illness away from me... it is hard, because does not matter what happen... Hiv won't go.... not right now... and does not matter how many crazy things people say i could do to get cured (since having a dialysis with ozone for ALL my blood, to jump in a elastic bed, having spiritual healing sessions, aromatherapy, electrical shocks, and so on).. the truth is that nothing of that can cure myself. If there would be a cure for this... everybody would knew it. All over the world, and that person who is able to cure us would be rich, cause no price is high for someone's life. Pitifully... we are not having cures.... but dream sellers.... that then disappear while leaving all of our families and relatives with a feeling of lost after they realise their effort was not effective that they were robbed.

Police and government should do something about it.

Tomorrow have most of the day free and i get into work around 4 pm, i will spend morning at my sister place. Well, that's the update... everything is fine with me, my stomach is ok... i am just fucking hungry these days. I am taking my vitamins everyday and i really see myself with a better face :) i like that, i was tired of feeling tired. Now i only have to work to establish a specific time schedule for the pills...because i am taking them all at different times everyday (better say... i take them at the moment i remember)... but i have to start training for the time schedule i will have to follow once starting ARVs.

Labels: New life, same illness

Tomorrow i will deliver my second testimony, i am meeting Claudia and her co worker (the pretty but silly psychologist from Social Security Hospital). We will team in this sensibility training. That's gonna be cool, i like to facilitate :) feels like AIESEC time.

I won't take my tests tomorrow... cause i don't think i will be done with them by the time Claudia will pick me up. I will take them next week. Today did a good sale. Except from something i read at night...

The next editorial note "Control of AIDS and infected ones" was published today, June 30th 2007, in El Diario Manabita, province newspaper. Being near to the National Assembly to be conformed, it is very important to open discussion about the rights of people and about the position that some sectors take. Your comment about this will be quite useful to create educational activities locally about THE RIGHTS OF PEOPLE LIVING WITH AIDS/HIV. Carlos Terán. ATP - UNFPA
_________________________________________________________

EDITORIAL - El Diario - 30 de junio 2007
CONTROL OF AIDS AND ITS INFECTED

Those who keep a systematic control of diseases like AIDS are against to disclose the names of those suffering of that illness, trying to prevent the infected ones from social discrimination that would damage their already poor health.

They explain that to the physical illness this would increase the mental and emotional discomfort, bringing consecuences, even from infected's families, because generally the critics, jokes and discrimination comes before the feeling of human solidarity.

In front of this, there is not even the intention to impose special control to their activities, leaving their actions and moral and sexual behaviour to their own will.

Understandable measure. Although, It has been known about some cases that people infected with Aids, have been infecting others intentionally.

Alarm signals, have started from entities like SOGA (protector of aids infected people) because the increase of infected ones, fear that was been confirmed by real numbers even though they have not been official yet.

Being respectful to other's pain and rights, we believe that our community is facing one of those moments where considerations for people should be re considered and re evaluated accordingly to how these people exercises their rights.

If there is a law the impose protection to the identities of infected people, this one should be reviewed to modify it in a way that does not affect the security of our community.

Who knows is carrier of death and intentionally exercises forbidden activities to multiply the disease, lose automatically his rights at the moment of becoming a menace against the security and well-being of citizens.

The respective authorities, specially health ones, should create a real epidemic control to enclosure the disease.
____________________________________________________

I replied....

Dear all, i have read this editorial gently submitted by Silvia Tello and i have to say that as a person living with HIV i have found it SAD.

It shows how few people try to get educated in an illness that in 20 years more will be considered same like cancer. Although of course... it is hard to ask some people to have some historical perspective... lets go back in time and imagine the years when cancer was firstly discovered... when there was no cure... and no treatments like those we have nowadays...wouldn't people react to the cancer patients same way they react nowadays to the seropositives ones?? what made the difference during these years was....THE EDUCATION... that's why nowadays cancer patients don't have to hide themselves... pity none is trying to get educated on HIV.

I also want to clarify something and it is a pity i don't have the email of the "journalist" writing this editorial, because i have learnt something ... one cannot deliver phrases nor numbers without a prove... phrases like "It has been known about some cases " cannot be said just like that. Some cases is how much? one? two? none?. Who said it? this journalist? the Ministry of Health? the neighbour around the corner?. Long before diagnosed seropositive i was taught one has to show proves for what we say.

Until what i know, none has established legal actions against anyone because of being infected of Hiv in this country (none gets infected of AIDS... but of HIV.. something this journalist with lack of education does not know). In case a demand like this one would be established there are tests (fenotype ones if i am not wrong) that could prove the responsibility or lack of it of the accused.... of course... these tests are expensive because nor the government nor anyone else.. have taken the time to put them available to the public, still with it they exist... and i assume you already knew them, right?.

For me the point is clear, people speak without knowing what they say. A week ago i delivered my testimony in a health care facility was a part of a sensibility training. First of all it was a huge impact for them because i am not black, nor drugs addicted, nor living a crazy life, it means i am not into the paradigm that sadly people with lack of knowledge about this illness have (i have nothing against these groups.. but it is a pity that ignorance makes people believe they are risk groups... without realising we are all in risk of this disease... same like we all could catch flu). The point i really want to emphasise is that at the end of my testimony there was a woman coming to me and asking me....

...."after diagnosed didn't you feel the desire of having sex with lot of people in infecting them with Hiv? I ask you because i knew i guy from my neighbourhood who died of aids and their family as soon as he died they burned all his clothe and all his things. They told all the people that he died happy because before dying he had infected lot of woman by having sex with them".

I replied... what you say has nothing to do with the Hiv, Hiv does not make a person bad or good... if the person is bad... he will keep on being bad with Hiv or without it. If the person is good, he will keep on being good with or without Hiv. What would happen if a thief gets infected with Hiv... it is very possible he will keep on stealing. What would happen if a priest gets infected with Hiv... he will keep on delivering his ceremonies and following his vocation (unless the church fires him...none knows how they would react).

The point is... firstly, lot of these "gossips, tales, and so on" are not based on real cases... what would happen if i would tell you "the neighbour of this woman told her, to tell me... to tell you that there are some people infecting others with Hiv intentionally". Some naives would go out running and screaming terrified (same like this journalist).. although some others would ask proves for such affirmation, because there are not known cases.

In the last six months i have received emails telling bollywood stories about things happening in Mexico... supposed bad things done by Hiv+ people.... to both emails i replied with a complain because people cannot be so naive to believe everything they read.... but yes, we still have some of those. That's why we don't improve politically, financially... we are like sheeps without critic sense... not even journalist feel ashamed of writing silly articles like this one published in this newspaper.

Are there people infecting others intensionally?... there are no proves, but lets assume there are... and not just because of being seropositives, but because they were already miss-adapted prior to their diagnosis. Hope that is clear. Although there is a need of proves before a non-aids-educated journalist comes to ask that our right of anonymity to be retired. I actually don't use it much anyways, because my family and my friends know about my diagnosis and they have assimilated it well, because they have been abroad and know that in other countries the people living with Hiv is same like the person living with heart diseases, or diabetes... just in this corner of the world people keep on freaking out. WHAT A SHAME THAT MY COUNTRY THERE ARE LOT OF IGNORANT PEOPLE ABOUT THIS ISSUE YET!.

By other hand this journalist is missing a point... assuming that there are 1 or 100 or zero people infecting others intensionally, the infection is IMPOSSIBLE if people would have protected sex like a way of living. And i hope more than one reading this is aware that scientifically and statistically condoms have proved to be effective in prevention of HIV infection. I assume i am dealing with educated people on this issue therefore i will not post url addresses of internet sites about this. Everything can be summarised in this point... the new infections does not depend on HIV positives people totally... in fact, not even in a minor percentage... because i can only be responsible of my own health, not of other's. Even though most of the people i know would disclose before having sex or if not disclosing they will be extremely careful and take safety measures not to risk anyone's health (taking into account most of the time the other person has never ever taken Hiv test), but the final responsibility and obligation belongs to each individual, something people fail to understand.

Since my diagnosis until now... i have listened 3 seronegative people to mention they are having unprotected sex and have never taken the Hiv test, in this cases they were not aware of my status. At the same time i have received at least 3 request of unprotected sex from people saying they "don't feel comfortable with using condom" simply trying to hide the fact they don't like to use protecting and have never ever protected while having sex. I have refused these offers. The final point at the end of the day will be always the same... each one of these people are responsible of their own decisions and actions. In this case i know my diagnosis and i can help not to put them in risk... even though it is not my obligation but THEIRS, but my conscience like human being guides me to behave as what i am... a good person. What would happen if i would not know my status?? if i would have not taken the eliza tests??? in that case... the person unaware of his status is not responsible for other's poor decisions. And not even now, we, seropositives might be consider responsible for wrong decisions taken by others. It is their own personal responsibility. It is being time for everybody to understand that if they use protection in their sexual relationships there is no risk of infection.

Something else this journalist fails to note ... is that for each person aware of his status, there are three not aware that they are seropositive and they keep on infecting others. It is very possible that the increase of cases could respond tot he bigger emphasis made to people to get tested and to the fact that there are tests available for free for pregnant women... being only this the way they and their husbands get to know they are infected.

Everybody always try to look at other place when they have to assume their own responsibility for their acts, why instead of looking for someone to blame this journalist starts to promote National Testing Day that is held in USA every year and is now being promoted in Latin America. During this day free Hiv tests are offered to people under the motto of "take the test, take the control" while making them understand they have to be responsible for their own health and know their status... i assume you knew all that. Perhaps we need other 10 years until Health Ministry and Education Ministry get the news and realise it is a good idea.

That without telling that the more infected ones we have... the fewer medicine available for them.... if not ask me that social security does not even have my vitamins... if it was for them i would be death already. Why none makes an article about them and their criminal way of treating me?. Why this journalist does not write about the criminal ways some government institutions and social security treat patients not only of Hiv but of other diseases too?? Perhaps this won't cause scandal... ahh... journalist and their hunger for scandals.

What would happen if in my work the would get to know about my status?? what would i do if i get fired??. Independently that i am not a risk for anyone in my work.. i can work, run, jump, play soccer, swim, and so on without being a risk for anyone.... but who will make them understand?? YOU??? this journalist??? I don't need to keep my status hidden because thats silly.... if any day something happens to me and am unconscious... none would know my disease... and i could receive a doses of something that might hurt me instead of helping me... and would end up with my life faster than Hiv... although... i have to choose between unemployment and hunger (with lack of meds) or remain the way i am and ask to God to give me time and health to work until the day something in my body fails and i would have to be in hospital for a month or two... and my boss gets to know about my disease and after that.... fired. My family knows my status and if one day i am alone and feel like dying... i just need to make a phone call and they will come fast to rescue me and safe my life. As you can see... for us it would be better not to hide our status, because while being open about it... our lives does not depend only of our hands... that with the time will become weaker and weaker... but when we are open, our lives will depend on every single person around us in a moment of need.

One day i will be on street and will be hit by a car... and i will bleed....and i might be awake after it... perhaps someone will come to help me and i will say "Mrs watch out.. i am seropositive". Apart from the fact that stepping on or touching my blood is not risky for this person (unless she has any injure that will be in contact with my blood)... the point is... what do you think this woman will do??? what would YOU do??... help me???? run away??? run away screaming watch out watch out he has aids!!! he is a sidoso!!!. Only you can answer this, but be realistic and sincere while answering. I am tired of so much hypocrisy in this country. So while people like you and this journalist would be unable to help my survival...but keep on being a risk for it and for my normal life... i don't find a right for me to disclose to you, you would not do any good to me if you knew.

It is quite easy to move your tongue or in this case your pen when your survival is not in risk... but this journalist should eat his own article cause he does not know what he is talking about.

As usual this country is upside down, and it is so disappointing to know that ignorance is allowed in written media, i think that even myself could have written a better article than this mentioned "professional".

I hope nothing i have mentioned in this email would be "new" for you, otherwise i would request you to update your knowledge about this disease... perhaps that knowledge will help you out to save someone's life some day.

warm greetings,
Juan Carlos

PS: I know i will die some day, same like any other human being.... i know it won't be sooner nor later than anyone.. it will be just in the right time. Although there is a thing i won't do... I WON'T LIVE THE REST OF MY LIFE SAD, ASHAMED AND READING STUPID THINGS ABOUT ME OR MY DISEASE without saying a word... I am a seropositive person, so what? i am not a monster, in fact i am very good person, very good friend, happy and trust worthy. I am a good human being and i think TO LIVE like that until the last day of my life. We have to fear the virus NOT TO THOSE INFECTED BY THE VIRUS.... I AM NOT THE VIRUS, THE FIGHT, THIS WAR.. IS NOT AGAINST ME...i though everybody in this country knew it.

PS1: instead of "enclosing the disease" like this journalist suggest.... we should enclose him!!!

I know it was long... sorry... but i was inspired and i had to say it all. 3am here....gotta go to sleep tomorrow it is going to be a great day.

Labels: New life, same illness

If i can summarize the output of my Dr appointment today in one word it would be ... "BULLSHIT".... or perhaps CRAP....mmm i think "BULLSHITCRAP" would be more accurate.

My mother arrived on time, and we both got into Dr's office... prior to that i got my blood pressure measured and my weight as well. Last time in May i weighted 79kg today i weighted 80.5kg. About my blood pressure i know nothing about standards but the nurse said i was ok.

We got into Dr's office.. and i was nervous, but a bit confident... i mean... i only had diarrhoea for a week in the last 2 months (since May 8th where i had my last appointment), my mother was nervous too. We seated and everything started to happen again... what is my name and all that. She does not remember who i am. She asked me if i had been having any trouble and i told her i had diarrhoea two weeks ago and that it lasted a week. She asked.."why didn't you call me?"...?????? I mean.. come on it was a diarrhoea..... i was not dying of PCP.... She said i have to be more careful. I told her it might be the hamburguers i love to eat and that i might have taken one late at night but Lactobacillus and Imodium helped me.

She started to look at my folder... and then she said.."oh.. we don't have your western blot test, nor your hepatitis c test.... have you taken vaccine against hepatitis b?" I answered yes... i did... i had told her that ON MAY!!. She said... "ohh but you haven't came since April 2007!!!!". My mother told her.."he came here to meet you on May 8th" Dr replied "oh really?, then why i don't have anything noted on his folder?". The fucking bitch is not keeping track of my case... she is a bitch. She is a bastard bitch playing games with my life. All the bullshit she started to say was the same crap she told me on May... come on bitch!! don't you remember you said the same crap to me before???.

Then the biggest insult came... the bitch was doubting why the lab requested me to repeat my western blot test.... western blot and IFI tests are used to confirm HIV diagnosis on patients... i had an IFI positive test for Hiv and this hospital screwed my western blot test.... the bitch started to doubt if i was hiv positive patient or not she is such a bitch. I mean ... do i have to face this? don't they understand how nervous their fucking stupid unprofessional behavior gets me?. Ok, bitch you want to test me for Hiv once more... go for it. Then she found the IFI test and said... "ahh no.. we don't need western blot since you have already tested positive in IFI one".

Then she said to the nurse... "you see, that's why we don't work properly... these tests does not belong to him!!"

WHHHHHAAAAAAATTTTTTTTTTTTTTTT????????????????????????????????????????

What are you trying to say mother fucking bitch that you have all my tests wrong????? she got me crazy and i started to feel panic... i mean... my CD4... my other tests... i could have died already and these mother fuckers would not know. I could only ask "is the CD4 test really mine??". She looked back at it and said... "oh yes this is yours, you had 494". Careless bitch. I hate the way they act, don't they understand i have feelings and they are not talking about simple papers but about the indicators of my health state... the indicators OF MY LIFE.

Then she asked me if i had had any problem... i told her i am sometimes feeling very tired but nothing more. She ordered all tests again... and said "ah nurse, order for him a BDRM tests as well cause we need them" and i exploded...." hold on, you are asking me to do all tests again... but for example the BDRM test, i asked you last time about it and you told me i was clean... now you are asking for it again, what do you mean? you mean you didn't have it before? was it also wrong test?". She looked at me and said " I had your BDRM i am ordering a new one to update the available information on your health, the fact that you are feeling weak could mean that you have got something... some virus or anything else due to unprotected sex with someone else so i need to verify it once more. Remember that the fact you can infect someone because of having unprotected sex is not the only thing we have to care about... we also have to care about you not getting infected of any sexual disease, hepatitis or any other viral infection that a seronegative person could give you". Ok... that sounds fair.

I left with an order full of tests.... once more. I will take them the day after tomorrow cause i can only do them on thursday.... very early in the morning.... and as usual my body react to the Dr's meeting.. i left her office trembling...i could feel it... it was so physically evident... and i hate it. I left her office full of fears.... her words and her lack of professionalism didn't help me... my mind started to fly.... what if? what if? what if?.... then i tried to control me... come on Juan Carlos... be optimistic. Your weight is ok, you are feeling ok, you have played safe.... there should be nothing to worry about....anyways, before taking the tests i will copy all the things she ordered and my next appointment with her on August 14th i will make sure she has them all and with the correct name.

She said... "well... i would prescribe you complex b and acid ascorbic but there is nothing of that in the hospital... so i will let you go without any prescription". so she is a very practical bitch huh?.... My mother asked her to prescribe me the vitamins anyways, she would buy them outside the hospital for me.. same like she did a week ago.Well... lets get over this shit and keep on living, lets do the tests and wait until middle of August to see how is my life. If i can base on my personal feeling i would say my CD4 is the same of have improved a bit.... or perhaps it has declined but not so much. Time will say.

Labels: New life, same illness

Artist: Christina Aguilera /Song: Fighter /Country: Ecuador/USA ;)

Hi, i am right now at Social Security Hospital, bringing you the last news ;)

I woke up 4.41am today.... even though i had set the alarm 4.30am. I am a bit slow when i woke up so i managed to leave home around 5.24am. I arrived Hospital at 5.40 am, last time i came there was lot of people making queue so i wanted to be early and to catch a good turn. I was the second arriving, was thinking in blogging as soon as i would arrive but there was a woman, wife of another patient, who came to chat with me.

I met her my last time here, her husband has been living with aids for the last 7 years. She is hiv negative and they are still married. We talked a lot... about living with this, her experience, the reality about access to meds and many more things... there was something i noticed and called my attention... she said she had seen lot of people dying in this hospital... i mean lot of hiv/aids patients.

In a moment i could not avoid to ask her..."how many people die of aids per year in here?" She replied: "Nowadays there are less and less people dying, lets say recently i haven't heard of any of the guys dying. Although in the past it was sort of common... but most of the deaths were not because of Hiv, they were caused because people used to have messy personal lives, were drinking a lot, or got deeply depressed.... many people went for suicide after facing deep depression". We kept on talking and i felt myself lucky... she told "it is good that you don't get depressed... that's dangerous".

And she is right, i am lucky... with all the things i hear and i have seen since diagnosed... i could be really down... but somehow... i have faith... i follow a light... i follow my hope...

I decided today i want to post about hope. My Hope.

My Hope is sometimes big and sometimes small... it is not something you can size... but there are some things i can say about my hope... my hope is REAL and is STRONG.My hope does not depend on others... nor on normal people nor on science... i am not hoping for a cure for aids to be found. I know it is possible but i also know the chances are .. that it will not happen anytime soon. My hope is not based on that, because... to live... i don't need a cure for aids.... to live i just need to be myself and keep on living the way i have always wanted and fulfilling my role in life. That's my hope... I hope i will remain myself while going through all this... and like the bibles says "whenever i walk through a dark path... you (God) will be by my side... and you will be my strength". I also hope i can help others to live better lives while fighting hiv/aids... and i hope the day that my final moment arrive i leave this world with my soul full of love. There was a movie i saw long time ago "a knight's tale" that had a wonderful phrase saying "love must end with hope".... well i would say i want my life to end with love and hope too. I am happy today... i don't feel sorry for myself... i don't feel self pity... nor consider myself in worst situation than anyone else in the world despite the hard times i have been facing all these months. I feel i am ok, i know i am going through what i had face in life... this was my path and i had to face it.... and i do it. That's the reason why i have had so many chats about life and death lately.... because i needed to realize... i am alive, and i am happy about it. I know one day i will die... but i won't force that day... and it is not going to come any time soon.... it will arrive at the right time.... in the right moment and i will happily go into the good night. Although that day is not today... and won't be tomorrow.... today i am happy with myself and the world around me.... i see lot of bad things happening to the world around and i don't complain about them today... i prefer to do something to fix them... i guess that's the best gift i can leave to everyone around me... my helping hand.

God has strange ways to do things... while leaving home.. i forgot my keys.. i have no way to get in again tonight. I called my mother... she will go home and bring my keys.. she wanted to be with my at Drs appointment but i told her there was no need. Once at hospital and taking my turn (got turn number 2) they asked me for my appointment card... oups... i forgot it at home. I called my mother and she will bring it to me.... so.... she will be with me in Drs. appointment today anyways :))) so funny... what is meant to be... is meant to be. Sometimes i feel a bit of fear of being so happy.... i feel sometimes i am enjoying my life so much right now because something might happen suddenly.... we, human beings, are not used to enjoy life... we always think something bad might come afterward.... i will work against that. Perhaps today i am just happy and calmed and optimistic because i should be.... i mean.. why not?

My heart is not ashamed.

Labels: New life, same illness

Artist: Soraya /Song: Suddenly /Country: Colombia/USA

Hi this was a sort of "normal" weekend, like those i am usually having since diagnosed. Not too many things to talk about just a couple of "particular" situations. First i can't still solve my internet connection problem. Even though i found out a way to connect through dial up, but 5 times slower than my work connection... it sucks. I might use it anyways for posting updates.

On Saturday i had an argument at work with Gary, a co worker. Rosa was having her baby-shower party and our boss asked us to contribute with some presents, she said we could buy something for about 10 usd each so we will deliver it to her. I spent 7 usd, my boss 10usd and Gary... spent 3 USD. Which seemed like an insult for me. I asked him "is that all that you will deliver to her?" and he exploded and off course, i am hiv+ boy but not silly + boy so i exploded too... i was ready for some boxing....really.. i was really ready... now, keep in mind last time i fought with someone due to my own will was when i was in 4th grade of school... and the very last time i fought with someone was in 6th grade of high-school (i was in a military high-school... so they found funny every Friday to get people boxing just out of nothing...they just chose two and said "fight"... i hated it). Anyways it was 13 years ago... but i was ready to fight with Gary... i even imagined the blood flowing ... i was angry... i was ready.... although it was not because of Rose's gift... i guess i just have some anger still inside... finally we only argued.. screamed.. and nothing else. I don't want to talk to him.

The anger could be from all those moments i have wanted to kick/hit people at hospitals... or all those times i have wanted to break everything around me and i haven't done it.. i have controlled myself... dunno if one day i will lose that self control. A fight sounds like relaxing sometimes.... but no, i am not going to look for it. I am a civilised guy.

I spent big part of Saturday at work, not working because i was free but they had internet connection and i was there making the last post on my Hiv blog. Then i came home and found an old friend online. This is a mature man, artist in his 40. I would define him like a successful guy, got lot of money, studied abroad (in Russia and other countries) and he is living here since several years. He is one of the top people in cultural environment in the country... got a great car by the way. We haven't talked in long time so we met online and arranged a chat in Fruta Bar, it was cool we talked and talked and talked. It is cool to go out and meet people again. He does not know my status and i really found no reason for telling him. We went to buy some stuff at pharmacy, and then he said "you know... there is something i haven't told you.... i have a heart disease" while he took a small green pill. I though... huh?...i mean a heart disease is something serious but it is just a disease.. how bad can it be?... and i asked (i know i should keep my mouth closed sometimes).."oh really, what do yo have?". He answered "well this is a strange disease that makes the walls of the heart become thicker and thicker.. until it is too hard for the muscle (heart) to work..... this comes from my father's family, some people have it in different levels, as for me... i am having it in the worst.. i used to be quite ok but in the last 5 years it has became worst". "Oh ... wow... i am sorry... but i think there should be treatment" - i replied... i mean.. it is hard for me now to figure out any disease that is worst than Hiv... i mean all others are supposed to be curable.

He answered "there is treatment but no cure, i have been poisoning myself with this pills for three years already and i am tired of it". When he said so... i though "guy... you have no idea on what to poison yourself with meds forever means... believe me". He only has three years in meds... people living with Aids have to keep them forever... i mean....he too.. but he is just starting.. how can he be so tired of it?, he is just beginning!!. He told me side effects of his meds are too strong.. but i still told him.. "how strong can they be man? i mean i have heard of people with terrible stuff... feeling like vomiting every time they take their pills but unable to vomit because they cannot throw the pills away... i have heard about people feeling worst with meds than without them". "That's exactly how i feel" he said. "One of the side effects of these pills is chronic fatigue... i mean.. look at me... i don't go out, i work about 14 hours per day... i really love working, i love my job.. i don't drink, i don't party, i have a normal calmed life ... my work is the only thing that fills my life.. but these pills are taking it away from me... i have to take them 3 times per day and after it i am unable to work... i am unable to stand up from bed and live... i don't want that.. i can't take them no more" - were his words. The i said "ok, i understand you... but there are different ways to deal with side effects of meds". I was very near to tell him i am hiv poz... but what for?... i preferred to use the few i have learnt about meds and side effects to somehow help him.. but his answer hit me strongly "Yes, there are different ways of dealing with side effects and thats exactly what i will do... i told you i am leaving to Canada this week,... but i haven't told you it is because i will have an experimental heart surgery to work on my heart problem". I said "what?". "Yes, there is this experimental procedure where they take off the heart from your body and work on the walls of it to make them less thick, after that they re insert the heart again and well.. after sometime, the patient should recover and see an improvement in his condition... still with it, the procedure has not been tested enough times to say if it works or not... so there is no guarantee... the Dr. who accepted me for this procedure told me it is quite safe though"- He said. I asked him.."what do you mean with experimental procedure? and what do you mean with there is no guarantee?... are you trying to say that... " "Yes, that thing is exactly what i am trying to say. It is just what you are thinking.. if things go fine.. i might be back by the end of the month... otherwise... i might not survive the surgery and will die before leaving the surgery room".

I got shocked... how can someone expose himself to such a risk?... i mean i would never take (or at least not now) take part in experimental procedures or testing of meds.. i prefer those who are already been tested. Plus.. how can someone be so aware of the risk of dying and still desire to go on with this risky plan?... Then i understood... as i said many times before... pain...

Pain is a big motivation for people... we all try to run away from it.. we all try to hide it and not to face it... and in the middle of despair... some people chose to die instead of living with it.... none likes to live with pain... and when it lasts too much... some people cannot handle it. It is like when there is fire in a tall building... and you are in the last floor... near the window... you can't leave the room... and it gets worst and worst.... you feel the fire starting to burn you... and in those moments.. in desperation... some people jump.... they know they might not survive... but desperation blows their mind... and the instinct of conservation... pulls them to go away from pain... sometimes going directly to death. I understood i was not able to advice my friend... i was not even able nor allowed to question his decision... we as human being.. should be owner of our life and our death. I learnt it with Hiv people and that is a right i reserve for myself too. As i said before... if one day i feel i need to decide to die because i don't feel like keep on going with what happens to me or my body in that time... i will. It is my right and i hope others around will respect it. Luckily i don't feel myself near of that decision right now.... but my friend is... and i could just tell him words of understanding... i had some more questions... but i wasn't sure if to ask them... he saw my face and told me "ask me anything you want... go ahead". "Do you believe in God?".. i mean i wanted to ask him what was his expectations in case he dies.. but i just didn't know how to phrase it properly... he answered "I don't believe in God... and i am not afraid to die... you know... to live poisoning myself is so fucking hard that if to die is the answer.. i am ok choosing it though. Once death i believe in reincarnation... so.. i think i somehow might be back in a way or another. Something you have to understand is that i have been living the last 8 months with a "sudden death" diagnosis... meaning that my Drs. told me that due to my condition i might have a heart attack anytime.. and i would not get over it... i have everything planned for my death since long... i have everything ordered... all....but i am still here... poisoning myself.. and i prefer to die instead of keeping on living this way... so if i have to chose between risk of living or the risk of dying... i take the bet".

I didn't know what to say... i disagree with his beliefs... because i do believe in God.. but i hope God pardons me... i just didn't feel it was the time to discuss about it, or trying to change his point of view... nor to ask him about "what if reincarnation does not exist?" i didn't feel the right of making him doubt of his decision... because i know humans have an inner conservation instinct... if he has decided to go this way... he might be living something nor i nor anyone else might understand and the only thing i could do was respect his thoughs... and wish him the best possible in the surgery room. After it, we changed topic.

Later on i was wondering myself... what was the goal of this meeting? i mean... prior to my diagnosis.. i never met people who were so close to death... i was like anyone else.. afraid of dying but never thinking about it... and now... i have a non curable disease... i hear often cases of people dying because of it.... people struggling or fighting for their lives... and even when i less expect... i meet people who might be about to die. What for? i don't get it... i don't understand what should be my lesson out of all this... i was just looking for a normal chat with someone normal... someone who might not have any trouble... he is rich, he is smart, he is successful .... but he is not happy.... he is so unhappy to even play the Russian roullette with his life.... perhaps i am not successful... but i am still fine, i am still ok... i am still myself and out of despair... perhaps in that way i won the race. Lord... i need you to explain me a bit more of what you are trying to teach me these days because i am not sure i am getting the total idea... i might be missing something... help me out.

Few mins before meeting David, my friend i mentioned above... i met Max on internet, he is a friend living with aids and actually the person who directed me to Myriam for help when i first got diagnosed. We didn't chat often... but he asked me how i was, i told him "i am fine and you?". We talked a bit more... and near the end of the chat he told me "you know.. i feel you quite ok, quite calmed... seems you have assimilated your situation quite well". I replied "i am ok, i am actually in peace with myself and comfortable with my destiny... there are few issues who bother me... but in general i am really fine". "So glad to hear that, i wish i could say the same... it seems this coming week i will establish a demand against Ecuador government due to the unavailability of tests for people living with Aids" he said. "Oh really?... that sucks, but i know it... i have never taken my viral load test so far..... so i know what you mean with it" I answered. Max is member of the coalition of people living with Aids. After this chat i met David and learnt about all this i have told you.... i feel i am missing something... i haven't taken into account some detail to complete the puzzle and learn this lesson.... there is a lesson for me in this but i don't seem to catch it... God will have to help me.. because i really want to learn... i feel... i really need to learn this lesson somehow... it will help me out in the future.

I also had a fight with someone i mentioned some weeks ago, this person knows my status because i decided to tell her... after having some adult chat... where she expressed the desire of having sex with me... i disclosed because i found her interesting not only for sex but for something more. Today we were chatting and i made a joke, she was saying she was having troubles with her teeth so i told her "ahh you have cavities in your teeth? then we can't french kiss, huh?" trying to joke and suggesting she might contagious her dental issues to me (which i am not sure.. i was just teasing her)... but she answered "you mean that if we kiss i might get infected by you?". I told her "what?". It is impossible to infect someone by kissing, not even french kissing... there are no cases registered in 25 years. I got angry... because after i disclosed to her, i gave her some addresses where she could find more info about Hiv and all her doubts... but it is clear she didn't look for anything... she kept her paradigms and wrong ideas about this. Then she said "well, i have decided i won't have sex with any seropositive person... at least not that i know.... and this not for my physical well being but for my mental one". I got angry... off course.. i like her... but i mean apart from that... she does not understand that having protected safe with a seropositive person is SAFE. There is no risk!!. Sometimes stupidity is just too big... and i told her... "you know it is very possible you have already had sex with seropostive people in the past..." and she answered "well,.... that was without knowing it.. so thats another case, but if i know.. i would never have sex with a seropositive guy"... so lil silly barbie... what do you mean?? that i should have lied to you so we could have sex??? looks like you are more blonde than i got to realise (this is what i though... i didn't talked to her this way.. i am a gentleman).... and we argued... i told her she is being discriminative, at this time i don't care about having sex with her.. but she is so stupid thinking that having protected sex with a seropositive person is bad... and she does not realise that she might have done it thousand times before... then she accepts as good the fact of having sex with a person of unknown status... because it is clear not all seropositives will come to you and tell you "Hi i have hiv"...stupid girl!!. Well.. we both got pissed off and stopped talking. Fine with me.. i haven't been close to her in 6 years... so i don't need her around anyways, and worst having such strong blondie ideas and closed mind not even interested in getting educated... as for me.. you go to the hell!!.

Well, these are my "normal" days... seeing the world from different eyes... from eyes of those risking all to win all....from the eyes of those who are not able to spend over 3 usd for someone else.... from eyes of those who risk their names to fight for other rights and access to meds and tests....from the eyes of those who prefer discriminate those who are sincere and rather believe those who might lie to them in their faces.... from the eyes of those not desiring to know the truth and accept that living or having a relationship with a seropositive person IS NOT RISKY as long as you have minimum care measures like many people do and live happily together without getting infected...... and from the eyes of those like me... willing to learn but unable to catch the whole picture yet. Life is so strange.... but i know two things for sure... everything happens for a reason.... and God has a plan for every single thing happening to us and around us.... we just need to understand it a bit more and we will realise what's the role we have to play in life. I am up to learn how to play my role in this game.... and to do it right.

Labels: New life, same illness

Artist: La Bouche /Song: Be my lover /Country: Germany

These days there have been some ghosts around my life. Not Ghosts like in that romantic movie we all saw long time ago... some other type of ghosts.

Today i dreamed i was in Manta (i always loved Manta a small city 5h far from my city and in front of the Pacific Ocean) i was with someone i dated long time ago...mmm.. something like 3 years ago. We had just met again and i was there spending vacations.... we were sort of romantic, and i was going to the beach to meet other aiesecers when i woke up. I know the dream is silly but it left me with a not so good taste...

The person i dreamed with is living a fairy tale... i mean, she is a pretty girl with lot of money, who is right now engaged in a relationship with a handsome guy with lot of money... and they are traveling around the world having sex... and lot of money.... and yes they both will live happily ever after. I am ok with that, i know some people are borned to be happy... in fact we are all borned to be happy... it is just that some of us are happy in different ways... perhaps having hiv?. Well.... to remember her was a bit painful.

Remembrances is something i have had lot in my life lately. Yesterday i had a training at my company's headquarters in the morning after it i was coming to work when my mobile rang. I answered and it was this girl i dated in February this year.... At first i didn't recognize her voice nor her name.. i mean we don't speak since February.... the thing didn't end up bad but the break up was not pleasant either. She said "I need to talk to you". I got afraid... damn... i hate getting afraid out of everything now.... but there was a reason.... when i met her in February we had unprotected sex. It was not my idea, i was actually using protection most of the times but the second time we were together she asked me not to protect because we were having something sort of formal..... so i didn't use it. I was not aware of my status...plus i don't even know hers. I just knew i liked her. Well... our fairy tale didn't last long... we broke up a week after, she said i was not compatible with her, and gave me some silly excuse. Yesterday i knew she engaged with someone right after me, perhaps her ex or someone else and they have been dating since then.

When she first told me she wanted to talk to me i though it was about Hiv, i though "i might have infected her.....for God sake...". God knows i would not like to infect anyone around me....but since October/November 06 (when i assume i was infected) until March 07 i was not aware i was living with Hiv. . I got terribly afraid... and had a panic attack.. the fear was too much... if she asked me... what would i say? how could i explain her i didn't know? should i tell her i am seropositive? what does she want to talk about?... i was getting crazy.... i needed help i needed advice.... I though in calling my mother, but she would be more worried than me.... or perhaps angry... i though in calling my sister and ask her for advice... but she is working, my lil niece is a bit ill.... they all have their own problems. My status have already been overwhelming to them to increase the weight and the worries on their shoulder... i though in calling Claudia... but i have like 0.20usd in my mobile... that would not be enough... for God sake... i have to face it all alone.... i tried to calm down... but i was terrified... i was in panic.

She arrived... as pretty as usual.... we greeted and she asked me "How are you?" didn't know if that was a question with double meaning but i answered "fine". We walked and talked... we past next to a mobile health care facility where they are vaccinating people against yellow fever and she asked me "did you take the vaccine?" Oh shit... i cannot take that vaccine, that vaccine is totally not suggested for people living with Hiv or Aids, as some of you know vaccines are made of viruses, in this case the virus of the yellow fever... and i cannot take that vaccine because it could hurt my health... but i answered her "yes and you?" "yeah me too" she replied. I felt strange... like if i was trying to get her to tell me what she wanted to talk about... and she wanted me to tell her something about me... i was not ready to disclose....

We walked and seated in a park, and talked and talked... about several things but the situation was killing me so i asked her directly "you said you wanted to talk to me about something. What is this issue you wanted to talk me about?". She said "Actually nothing special, i was in a bank near your work and i have been there twice looking for your to chat and i didn't find you so i though you might have moved somewhere else. I only wanted to see you and talk... since we broke up we haven't talk to each other". Oh God... thank you. I was so afraid.... we talked and i told her i already got over the painful remembrances of our broke up and she said she wanted me to be her friend cause she thinks i am very special guy yadda yadda yadda.... so fine, we are friends. We didn't talk much cause her boyfriend was waiting for her somewhere.. and we said goodbye... i don't know if that was everything she wanted to tell me.... but if she said so... i hope.

The fear of having infected someone with hiv is huge... but i have to learn to accept i was not aware of my status... same like many people around the world who does not know they are living with the hiv virus and infecting others,... perhaps others they love. Another thing is that Hiv is not transmitted in every single unprotected sexual relationship i might have... even now... sometimes it might happen, sometimes it might not.... but it is like a Russian roullette.... that's why i play safe right now. I don't want to hurt anyone.

Now the third ghost.... today i went to visit my mother at my sister's place. Everything was fine, but while leaving i told her i have appointment with my Dr next week and i had forgotten to take some vaccines (these were prescribed by my Dr) HBV (Hepatitis B Virus), Flu and so on... i haven't taken them. Why not? first i don't have the money and social security does not cover them... each one of them might cost among 30 to 60 usd and sometimes more than one shot is needed. Secondly, i forgot. How can i forget about taking those vaccines? .... you know that's very simply... you only start worrying for other things like the banks calling me all the time or pushing me or sending me letters to pay them... believe me, once you worry about them... you forget about any vaccine.... specially if they might be useful but are not vital. I mean i can live without them right now... even though... if i get to catch HBV for instance... i will certainly regret not to have taken that vaccine. Although i am trying to be careful and don't expose myself to any risk. Off course my mother didn't agree with me and we argue.... that's usual among us... she is really nervous about my health... i am just too confident about it... perhaps we are both wrong... she fears out of everything and i don't care much about nothing... when i should care sometimes. We argued and she said something like "don't ask me for help for the rest of your life".

Don't worry, i know my mother and she didn't mean to say so... but now you understand why i always say she phrases stuff in the wrong way and i argue with her. Her words didn't hurt me this time... except for this phrase "for the rest of your life". What's the trouble of everybody with the duration of my life???? I mean... it seems everybody cares now about how long i will live or not... i have heard several times and it pisses me off.

The duration of my life is none's business just mine. I might die tomorrow or when i am 100 years old, that's not your business. Although i think you all should have something clear.... we are all going to die. Perhaps you haven't think about it, but i did.. we all hiv+ do.. that's the only difference between you and us. Even though the fact of saying "Hiv+ people die sooner than normal people" is wrong....deathly wrong if you allow me to say. Lets say if you compare the duration of my life to the life of someone else my age who is not diagnosed Hiv+ statistics might say i would live 11 years less. So this person Hiv- might arrive until 61 years old in a normal lifespan... i might get to 50 years old.. i personally don't see much difference.. i have no idea of what i want to do once i am 50 years old anyways. Plus, there is always the chance that this Hiv- guy dies before... in a car accident, airplane crash, poisoned, in an assault, with a heart attack, cancer, anything.... you know guys, there are many different ways to die and hiv is just one more and funny... it is not the most common one. I am not trying to scare you, but i just want to say i hate people mentioning the duration of my life in their words "be happy now that you are alive" "enjoy your time while your are here" "Try to be happy for the rest of your life". You can save those comments purple. I plan to be here for long time yet.

As for my mother i know by tomorrow things will be ok again, that's how families are... blood is stronger than water someone said. Although i am definitely going alone to my Dr appointment next week.

I went to Luigi's farewell party the day before yesterday it was great night!!, i drunk 4 big glasses of beer (German size!!) and with the second one i was already happy :) i have never been much of a drinking guy.. but i had fun, i was very glad of seeing Luigi, and it was strange... last time i saw him in February... i was trying to give me words of hope about his time here in Ecuador we talked a lot, i was ok.. i was healthy... and now we met and i have hiv. It felt strange but didn't ruin that night, i stayed until around midnight then i went home. My family had been calling me all night to make sure i didn't get drunk plus i didn't force my health too much. I am fine... i am still a strong guy. I cannot post pics cause there was not much light at the bar last night, so we will have to wait for Luigi's pic.

Labels: New life, same illness

Hi everybody, i am sorry i could not blog before but i am having enormous challenges to connect to internet. I used to use my work connection at home, but now it is not possible and i am not sure it is going to be possible in the future. I can't pay for internet as it is obvious so my possibilities to blog are being limited lately. Plus... my laptop is crashing a lot lately :( like one of my ex used to say "that expensive piece of shit....". Well, right now i am at work trying to blog fast and concrete since there are lot of eyes around me.

So i am fine, i am alive and i am healthy, don't worry for that. Past weekend was fine i worked a lot but i also had the chance to attend an Aiesec camping day at Parque del Lago, which was a bit hard at the beginning but ended up quite fine. It was hard because i have developed fear to groups... the only reason i was going there was that Diana Patricia, Mayda and Ricardini told me they would go... and at the end none of them was there. I was about to quit the idea and come back home... but instead i decided to stay which was a great thing. I slowly became myself again... the same old JuanCa everybody knew.... joking, smiling, having fun... that was nice and i ended up that day quite happy. Here some pics.

ok, well that was really a good day and we arranged with the guys to meet to go to the watch a movie to Jorge's house. By the way, i am sorry i cannot post a song right now, in fact i am trying to write fast because i am afraid this shitty laptop (that i still need to pay) will crash. So the next thing

On Monday 25th of June i did my testimony about how is to live with Hiv in front to a group of 11 people working for a Health Care facility. Before telling you the whole thing, i think i never mentioned you the dates of my testimony, so here there are if anyone is in Guayaquil and have time to attend the sensibility training about Hiv and people living with it, let me know i might have the chance to get you a ticket :)

• Lunes 25 de Junio 3pm. Centro de diagnóstico Jose y Maria (Tulcán y Venezuela). (done)


• Jueves 5 de julio 09 am. Isla Trinitaria


• Miércoles 11 de Julio 10 am. Dispensario Palenque (outside Guayaquil)


• Lunes 30 de Julio 13:30 Dispensario Pedro Carbo (outside Guayaquil)

So well, i was appointed for the training because it was my own will. I was supposed to attend the conference and at the end deliver my testimony. Once i arrived to Vihda Foundation, Claudia my psychologist asked me to help her cause Maximiliano, the director, had to travel to USA urgently. She asked me to help her facilitating the roll calls. I accepted. I know it sounds fun and easy... we have done that houndred times in Aiesec, but it was not much fun nor easy for me at the beginning. I accepted because i always accept to help people... i should learn to say no. I was scared... almost terrified.... i am afraid of groups and even though Sunday camping day was a big help for me to recover my own confidence... i was not much sure i could be "the old JuanCa" everybody knew. I mean... the old JuanCa was funny guy and very open and friendly while facilitating.... current Juan Carlos is not... is not funny, is not open to other people, and does not facilitate since long. Current Juan Carlos.. is afraid of groups... is afraid of meeting others. I tried to remember our roll calls because i didn't really like those in the agenda... but i could not figure one.... i remembered some.. but none would have wanted to lie on the floor doing some sort of sexual positions ;). So i did my best, during the opening and introduction we did an activity where we had to talk to everybody and get to know us. I talked to lot of people and i had to smile... i was not smiling... i HAD to smile. I have never had to smile ... i was always very friendly and happy guy... seems i am not that much funny right now. Well we talked and people got relaxed.

I was worried and impacted by the lack of knowledge of these people... i mean... they still fear that using condom is not safe.... they still think that black, prostitutes and gays are "groups of risk". They don't understand there is no such a thing like a group of risk... we are ALL in risk. At the same time their lack of knowledge got me afraid of disclosing... i mean... i don't know why i expected they would know more about the issue and had less wrong ideas on what to live with Hiv was and who we Hiv+ people are. I was getting more and more afraid... but i was already there and i assumed that was my mission at least that monday. I got in sort of contact with the people, making jokes making them dance... having fun. Then my part arrived.

I first asked them who had had contact with an Hiv person before in personal way, not like a patient in the Health care facility... only two raised their hand. I told them that it was perhaps wrong, because at this time with the numbers we are having.... most of us have already met a Hiv+ person so far. Perhaps we don't know it, or the other person has not been opened about their status... or even worst, perhaps that person does not know he/she is Hiv+ because he/she has never taken the test... but yes, so far i am pretty sure most of us have met and greeted someone with Hiv. I told them i had a good friend of mine who is Hiv+ and he is a very cool guy and he was waiting outside the room... i would call him and for them to talk to him. I went out of the room and came in and said..."Hi I am Juan Carlos as you all know and i have Hiv". That was a HUGE SHOCK...ENORMOUS... I could feel it and even hear it... complete silence... like if the sky had fallen on them..... they all felt nervous, shocked sad.. scared.... a girl left the room... she said she had to go to University while smiling nervous.... another woman started to cry..... some others changed their attitude towards me... more defensive... perhaps they still though they could be in risk of infection.... after having said they would not discriminate a person living with Hiv.

That's how it is... people say i will never discriminate or i don't discriminate you... but they never get close to us.. thats discrimination too. I have invited my friends to cinema or hamburger... and none of those who said "JuanCa i understand you, everything will be fine" accepted... i have been discriminated too. When Javico went to the dentist at 8am and they told him to wait until 1pm... he was discriminated too. I remembered how black people were treated before the evolution of humankind....that's how some people treat me, treat us nowadays. I said all that to this people, and i told them that i heard them speaking about "risk groups" and all that... and i told them i was disappointed because they should know better. I explained my whole story... i asked them to read a part of a testimony of a person i copied from Poz blogs, saying...

We who live with HIV are your neighbours, your friends and lovers, your parents and children. We could be standing next to you in the check out line. We could be your lawyer or teacher. We could be you. We are you, because you live with HIV too. There will be someone who touches your life, in some way, who is living with HIV infection - whether you know it or not. Ann's Blog

I explained them that we all live with Hiv, i suffer from it, you fear of it, some others have to fight with it.... some others cry because of it... but we are all involved in this fight, whether you know it or not. YOU live with Hiv too.

I also tried to explain them that once they see me in the street they should not point me and say "He has hiv!!!" they should look at the person next to them and ask "have you taken the Hiv test?". By the way... have you taken it??? YOU the one reading this... have you taken it???.

I started to sweat... suddenly the room was too hot.... i was speaking and speaking and speaking... Claudia had to do a sign to me and say "lets go to the questions ;)". I was a bit out of control. Too much emotions... i could feel their shock.. i could feel mine...silly as it sounds i was not expecting they would be soooo shocked... perhaps i am so comfortable with myself right now and my status... that i though they would... plus none has been so shocked of meeting me before... i don't bite. I didn't feel good. I was the center of the attention... center of fear... center of the doubts...the center of the shock....i was in the center of this emotional Tsunami and was trying not to struggle but keep on floating..... i don't want to be under all that emotional charge.... i wanted to be above... where i could breathe and exist... despite all their fears... i need to be alive.

They made few questions, they were just too shocked someone thank me for telling them my story and other person said that it was good this kind of activities. One person said she disagree that Hiv+ would tell their status.. cause that would lead others to feel afraid, unsure. That if in other countries people are more opened it is over there and not here... and she left. I told the rest that we cannot keep on living hiding.. i don't have a reason to be hidden... i am a person, a human being. I have the right of having a normal life like any of you. I told them..."you have to fear the virus, not me. I am not the virus... i just suffer from it!!". We finished. People came to hug me, women kissed me.... and there was a woman asking me...."after diagnosed didn't you feel the desire of having sex with lot of people in infecting them with Hiv? I ask you because i knew i guy from my neighborhood who died of aids and their family as soon as he died they burned all his clothe and all his things. They told all the people that he died happy because before dying he had infected lot of woman by having sex with them". I replied... what you say has nothing to do with the Hiv, Hiv does not make a person bad or good... if the person is bad... he will keep on being bad with Hiv or without it. If the person is good, he will keep on being good with or without Hiv. As for me, i haven't been sleeping with and infecting others.... in fact my sexual desire have reduced a lot... really a lot because of the stress we all have of having someone's life in risk because of us. That's already a big weight we carry on our shoulders (when it should not be our business anyways... because each one of you should be sexually responsible to use protection... but we do care... at least most of us).

At the end of the whole thing... i was tired, shocked.. i felt like in a middle of a building in fire... or in the middle of fireworks... the whole thing was overwhelming..... i could not process the whole stuff i was like astonished and shocked... I went out of there with Claudia and helped her to take a taxi. I decided to walk.... while walking there was wind around all the warm overwhelming feeling was gone.... "wow... none looks at me anymore... i am just one more person... i am glad of being just me again". I know speaking up is needed... but i don't think i would like to dedicate to activism... perhaps it is just not for me. I talked to Claudia, she wrote me asking me about the whole thing and i told her what i am telling you all... plus i asked her that after these four sessions i wanted to have a couple of months free of speaking. Just for myself... to analyze all this and come up with a lesson for my life. She wrote to me that i am not obligated to do it again... that i should take my time to think about it and let her know whether i decide to do it at next sensibility sessions i had agreed, she said i was not forced to do it. I am thinking about it,...... i think i will do those missing.... but afterward i will take a rest of this..... sometimes it becomes too much.

Tonight it is Luigi's farewell party :((( buu... he is going back to Italy and messaged me to invite, so nice from him. I will be there tonight, it is long long long since i don't drink a beer :) or dance... i am becoming myself again and i want to celebrate a bit. I have no money to do it... but i hope i can at least try a few of alcohol tonight.

Well guys this is my update, i promise i will try to post often.... as often as i can. Big hugs, stay well and protect yourself.

Labels: New life, same illness

Artist: La Oreja de Van Gogh /Song: Geografía /Country: España

Today It was better day, sometimes after sleeping a lot i feel better next day. It seems i might catch a sore throat.... i have an amigdal swollen. It is ok, nothing to worry too much. It was a good day at work, i did lot of sales. Something unexpected happened, my co worker Rosa who is pregnant had to go to maternity tonight because it seems she will deliver her daughters in advance. I hope everything goes ok for her. Once she deliver her daughters she will stop working for two months... that would mean my schedules will change and increase... .. and my free days will be affected as well, but it does not imply any increase in my salary .... too bad.

The discussions inside the coalition of people living with aids have increased... they are having such fights.... it is amazing. I am very disappointed about them. Some people had told me i should be careful with them, now i understand they were right. I guess it is because there is lot of money involved in this "war against aids" and some people have stopped caring about the war.... but just focused about the money... too bad too. My friend from machala sent me some information about how the whole thing is organised... it is too complex....it is a very well done knot. Hard to solve... The whole stuff relies on about 9 people composing the MCP (Mecanismo de Coordinación País / Country coordination mechanism). This mechanism is composed by a representative from... National program against hiv (government), Police, Army, NGO's, a representative of positives men, a representative of positive women, a representative of positive gays, a representative of sexual workers and the president of the MCP. They are in charge of dealing with the Global Fund and develop strategies against Aids, Malaria and tuberculosis. My friend sent me several documents i need to go through in order to sort of understand the role of each body clearly....

Plus i really don't believe all members of MCP for instance are really focused on fighting this illness clearly. The MCP initiatives are evaluated by an international organisation in this case CARE. The other thing is that MCP is mostly focused on the relationship of the country and its organisations with the global fund. There is the other part of the fight done entirely by the Government, that part is out of anyone's hand. I mean government does or does not do what ever they want.... how can one push them to do things faster? to do things better? As it is obvious the health ministry and its representatives are not really up to move fast. It looks pretty complex to me... lets see.

Well as for the rest it was normal day, on sunday there is a camping activity with AIESEC i think Diana Patricia and Ricardo are going... they told me if i would like to go.... mmmm... i think so, even though i am a bit nervous and afraid. Although i guess it is time to go out of my lil safe box and... perhaps see the world a bit more. I still have time to do it.

Labels: New life, same illness

Artist: Dixie Chicks /Song: Not ready to make nice /Country: USA

Sometimes i can't wake up and live.... sometimes i stay in the middle of the nightmare all day and night long...

Some days...i can't help myself.....

Today i woke up and fallen into sleep again... mother had to call me at 12h45... i get into work at 13h00. I arrived late... if she didn't call me i would have missed my working day. That's an idea of how sleepy i am. Mother is worried, she knows it is not normal... i know that too.... although i am much more gentle with my body... i know what is happening... i know... everyday i wake up there are less defences in my blood... and therefore the weakness.... i think my body has done lot for me during several years i treated it careless... abusing its good state and resistance... so if my body ask me to sleep now... i please it.

Got dressed to go to work, went to a mirror to brush my hair... God damn!!... i look terrible... i fear.... i see my face thinner.... and i am all with full beard... i look so shitty... i can't go working like that... i have the face of someone who is ill.... i don't want to look like that. I was never caring about my "image" i don't know how to combine colours, never buy designer clothe in fact to go to the University i always took the first jean and the first t-shirt that appeared in front of me. I always said "i come here to study not to model". Although now... i care about how i look, because i know i am slowly starting to look shitty. So i have to put more attention on how i look .... so i can hide a bit the illness i carry with me and how my body is ..... dying?... nope. Lets say "how my defences are failing".

I went to the store, had a sort of normal day... i didn't have lunch, i didn't have much money 4 usd. Around 4pm my stomach was really hungry.. damn, lets eat something. I went upstairs and buy some rice with meat and french fries (here they call it yapingacho). Tasty!!!... although i didn´t have anything to drink.. it would be too expensive, i alreayd wasted 2 usd. I went to bathroom to wash my hands... and looked myself at the mirror.... God... my face looks red!!!.... i mean i am white skin but my face looks red.... it looks red!!! My brain start flying.... could it be something??? can it be the hiv??? does everybody notice it??? do i have fever??? do i have hypertension??? what happens to my body??? i might be imagining this shit... come on Juan Carlos, keep the control... ok?... none ever mentioned Hiv would change the colour of your face so shut up and forget your fears. I went to the store, started to joke with the guys, started a joke with Rafael, about white people:

• JuanCa: aha, but you cannot compare your white skin with mine, i am white you look like too thin and like a death person LOL!!!! :)


• Rafael: aha, i am actually normally white, not like you bastard :) and your sort of white tanned skin with red face!!!! hahahahaha!!!

That was the end of the joke.... my face looks red and people notice it. FOR GOD SAKE MY FACE LOOKS RED!!!!!

Try to calm down juanca.... come on... calm down.... i stay online, chatting with friends, mother call me. She is going to spend night with me at home, cool i ask her if she has brought something to eat... i am hungry and there is nothing home (without electricity there is no fridge... everything spoils too fast, plus... there is no water). There is no water at the store too... they finished it. I have only 2 usd in my pocket now... i can´t buy a bottle of water... it costs 0.50usd. I need to save those 2 usd for lunch tomorrow. So i remain thirsty.

I talk to my sister about a new business idea and she likes it, i send an email to a friend to arrange a meeting we three. This guy works for Nokia as trade marketing representative and he is also christian believer, we talked about it today... in fact... he is attending same christian group i did attend long time ago (coincidence? huh?)... He says "you have to go back..." and looks at me with sad eyes. I was leader there and spent with them over 5 years... even more than in AIESEC. I think about it, i know i had good times there... but christians tend to believe "goods have to be together with the goods" and i like to help everybody. That's why i chosen Aiesec, and that does not mean i lost my personal relationship with God. Plus... i have Hiv.. and i am not sure how good i might sound for them now. My work does not allow me to attend the meetings of the christian group... there are several possible excuses. I scaped of it.

I get an email from my friend of machala, about the coalition of people living with aids in Ecuador. They are fighting. people from my city accuse the national secretary of misusing funds..... Oh My God... with these people we are going nowhere... now i know why nobody else complained about the viracept stuff... they are fighting among themselves.... losers. With such leadership we are not going anywhere in this war... i feel frustrated and disappointed.

I arrive home at 9.30pm i am tired, feeling strange... my mind.... my brain... i can't think, i can't focus.... i feel like i hate everything... everything bothers me.... i don't have headache... but i can't think.... i feel blocked... mother tells me to go to a restaurant 3 blocks far.... it sounds so far for me.... i don't want to go... i prefer to stay home.... we start to walk going there... and i ask my mother "do my face look red???" She answers "no, it does not". If she says so... then it is... i believe her. I trust her. I tell her about my mind... the way i feel... she says "be careful don't worry too much or you can have an aneurysm!!" Oh my God... aneurysm!!!! no no no... JuanCa... you have never had hypertension not anything wrong.... you cannot have aneurysm just right now.... we walk and talk about stuff and i get angry. I think she phrases things in negative ways all the time and i get angry.... we discuss... i tell her to go alone i will go home. I turn on the pc, and mother calls me... "are you coming?" I tell her... "i don't want... i am not hungry". She replies "you said you were hungry when i called you at work". I reflect... it is right... i was hungry.. what happens to me?. I answer "i'm just thirsty... ok, i am on my way there". I change my clothe... from a jean and a tshirt to a short and a small tshirt... while walking it is cold... but i feel it refreshes my body... it feels good. I was feeling too warm..... i have fever. I think i have internal fever, the inner temperature of my body has changed since diagnosed, i had noticed it before. I arrive and eat whole dinner... and drink two cokes... i needed something cold... wow.. that was good!!. I tell my mother, i have fever..... she touches me and says... you are fine. I believe i have fever.... it is internal, it is part of the symptoms... is my body fighting... luckily i don't sweat too much while sleeping which is another symptom... it is because i turn a fan and sleep without blanket and almost naked. One day i forgot to turn on the fan.... and i woke up at midnight... totally sweat......

After eating i feel better,.... and i reflect..... God... what kind of life i am having?... is this how my life is evolving?... feeling strange and sick and afraid... is this what i am becoming??.... is this how i will live the rest of my life???.... i want to say good night, today was not a good day.... it was too overwhelming... perhaps tomorrow will be a better day.

Labels: New life, same illness

Artist: Alanis Morissette /Song: Simple Together /Country: Canada

I was feeling tired yesterday night, so i didn't blog and tried to wake up early today... which i did, just to turn on the pc and then fall sleep again. Although!!!... here i am one more time. Yesterday i made my way to the social security hospital... and guess what???

THEY DON'T HAVE ANY OF MY MEDS.

Bullshit huh? aha... i know, i was very frustrated.. i though in going to make a big scandal to the chief of pharmacy, she is the last responsible for this stuff, i talked to her last time but it seems the bitch is doing nothing. I wanted to hit someone... to break something... have too much anger inside... i called my mother to tell her the news... she said "those bastards". I cannot imagine what to expect once i start taking meds..... can you imagine that? I asked when i could go to ask for my meds and they said "they didn't know". So i won't be taken them cause as established i cannot buy them right now. It is fine... i mean they are just vitamins, my sister told me she will try to see if they have some of them at home. I was basically needing:

Ascorbic Acid, B complex and Loratadine. The first two are for maintenance, i mean while my defences are falling the vitamins help my body to keep up (and perhaps avoid the tired feeling i am having) and Loratadine, is for dermatological purposes. So well.... gotta live without them.

I met Javico yesterday, he is travelling a week to Columbia for a congress on Hiv/Aids and people living with the disease. I am sorry but i though... a congress about Hiv/Aids?? i mean.....it has no cure... what else do i need to know?? Yeah well.. sometimes i feel like... "come guys it has no cure so whatever!". I asked him, he told me it is a congress about "Leadership for PVVS" (PLWA people living with Aids). Yes!! i like that, it sounds like our ALDS!!! oups... there are no alds anymore.. now they are called Exprolds or something like that.... at least last time i remember. I guess it is needed, leadership is one of the few things i have seen among the people living with aids, that's why most of them have chosen to accept the place society has wrongly given them.... darkness. That's why we hide, we fear and we are ashamed.... because people told us we should be, they made us feel that way... and it is not fair, if i am going to die someday (same like you all) i don't want to spend my last days, months or years hiding... nor being afraid or ashamed of myself... i am a good person, i didn't do anything wrong to others, it is not just. Javico will spend a week in Cali and then come back....ohh..I'll miss him.

They published my letter addressed to this Dr of the Infectology Hospital!!!! off course, they did it 48h later.... but at least they did and i got some support emails back. This was my letter, translated (this fucking Drs don't speak English.....)

Dear All:

Despite of the risk of sounding rude... i would like to express my point of view.

1. Dr Rodriguez and Mrs Ministry of Health,thanks a lot for taking into account the recall of viracept anti retroviral medicine.

2. I wonder why do we have to wait "during this week" to define alternative treatments, when it is well known that anti retroviral therapy CANNOT BE SUSPENDED.

I understand we all want to give a hand.... but sometimes it is matter of giving the hand "on time" and "time is what people living with Hiv/Aids don't have". A day or a week can make a big difference between developing resistance to the treatment or not.... i don't understand why things are still so bureaucratic here. If not ask it to me, IESS does not even have the vitamins i was prescribed to... if it would depend on them i would have been death already.

Sometimes it is matter of agilizing stuff. I am sorry but i feel not everybody involved in the "fight against aids" have the same urgency feeling as those in need. Sometimes it is matter of getting into our shoes. Juan Carlos

I got two emails back of people supporting me. First from a guy of machala whom i have talked by email before.

Hi Juan Carlos.
I saw your email through the Aids coordinator of El ORO province, addressed to the Director of Infectology Hospital and to the Chief of National programme against Aids and it is very good what you expose about the lack of agility to recall this meds. This is nothing for what you will have to keep on seeing and discovering while fighting my friend. I am forwarding you the first email about this issue sent by Roche on June 8th.... your comments were very appropriated now. Keep on going!! WELCOME TO THE TEAM...
Juan Cristobal

I got another email from Tito (yes, the fat guy who delivered the shocking-out-of-this-world-impossible-to-forget session on safe sex and condom usage)

I totally agree with you, i bet if it was a med that is been taken by most of the PVVS, people would be pushing them to find an alternative scheme of meds. Although as it is not common scheme for most of patients none is pushing them to find other options. We must push our organisational leaders to really perform as leaders giving strength to this claim because the life of everyone is important and that includes the life of our mates that were taking viracept. It is important our leaders worry about this as much as they worry about getting into global fund, that they remember that without patients... there is no fight, we all need it. Tito.

So.... it seems i have a small activist in me. Or perhaps non an activist, but at least someone who was able to speak up, you know me... i love speaking. I guess one should do like what Avril Lavigne says...

BE STRONG, STAND UP, MAKE A DIFFERENCE

Not sure if i did all that, because i don't think these Drs will move their fucking asses to do things faster. Although i said it... what others didn't notice or didn't want to say.... it is good to be new in this, i have no so much fear... i am not used to be treated like bullshit (yet...). I hope i will never get used to that............. but perhaps many days or years being treated the way i am being treated for health care authorities... might destroy the strength i have.... and will make me used to their negligence. I guess that's what happens to everybody.. and everyone...

People see unfair things around the world but none says a word, we are all getting used to it... and thats not right. As for me, i want to get more involved in this shitty war against aids and if God gives me the luck and the strength of not getting used to be treated like bullshit... i will kick the asses of this mother fucker negligent Drs. To be so irresponsible is also criminal.... and i am a good person, i won't let them become criminal... not if i can kick their asses to make them do their work properly. That's why i was educated to be a change agent... and agent nomad JuanCa is trying to do his work.

Change & out.

Labels: New life, same illness

Artist: Paul McCartney & The Wings /Song: Live and let die (Shrek III Soundtrack) /Country: UK

Today i went to see Shrek III. I invited two friends but one didn't answer my sms ( i guess she was busy) and the other one asked me to invite him (meaning i should pay for him) and well... i just decided not to do it. I mean, i am not right now in a position to pay cinema tickets to anyone, right? We know that. Plus it is annoying that people come to you saying "ok i'll go with you if you invite me". Perhaps it is just that i am not that kind of person. Wherever i go, i do pay my stuff. Perhaps this friend didn't mean to sound rude... but well... it didn't sound nice either and i told him so.

Today morning i slept a lot, and it was strange... i found out myself on bed at noon, feeling depressed... and weak. I mean, it seemed that the most i would sleep the most i would feel depressed.... without a desire to go out. I was lot into depression when i was a teenager, but i am not much into that since 1996 when i became more spiritual person and developed a better relationship with God. You can call it a miracle if you want , but it is truth for me. I decided to stand up and live.

I went to the store to deliver some stuff, then went to the Social Security Hospital but arrived there late... around 3pm. For some reason they only work half day (what seems stupid for me....) so i will have to go back tomorrow morning. I went to pay to Centro Mundo Bank and they had already charged me 22 usd of interest to the 18.55USD payment i had to do.... isn't it usury?. Luckily i complained and they pardon that interest cause it has not been my fault not to pay them. I gotta be punctual with these people.

I received three days ago a letter from Guayaquil Bank (when i say the banks are hunting me... i am not exaggerating). They told me i have a debt of around 37usd in my current bank account because of overload (not sure if it is the right term). Which is funny... my current bank account with them is on 0 USD since February i think, but they charge me monthly some amount for "maintenance"... maintaining what? i don't know. So that's why i was "overloaded" and had a debt with them. The letter said that if i didn't pay that amount they would close my bank account and that would be a bad story for credit bureaus in the country. Well... i already have a terrible story with credit bureaus..... but i decided i would save that bank account, because it is hard to open one... and when this bad time ends up... i might not be allowed to open any because of the terrible credit story i am having. Lets put it like this....

Before i had

• 1 Current bank account


• 5 Saving bank accounts


• 2 Visa Credit cards


• 1 Mastercard Credit cards


• 3 Buying cards

Right now i have

• 1 Current bank account in 0 USD


• 4 Saving bank accounts in 0 USD (or minus xx USD.. i haven't checked them) and another with 22 USD


• 2 Visa Credit cards (1 blocked and cancelled, and other just blocked....hope so) (payment agreement with 1)


• 1 Mastercard credit card (blocked and cancelled) (payment agreement)


• 3 Buying cards (all blocked) (non being paid)

And those are NOT all my debts......mmmm Big change huh?. yeah... life change... before my current bank account used to have an average deposit of 800 usd. Now... well...

So i am expecting to lose almost everything i had built in my financial credit record, i wanted to be credit worthy in the past... now i just want to be alive, so i guess it is a good trade. I prefer to eat a bit instead of paying all the cards, off course they don't understand it. Yes i know... it wasn't wise to get so much stuff.... well in that moment i had money enough to spend on many things, credit cards were one, another was the gym at the 5 stars hotel (that cost almost 90usd per month in that time) plus acting lessons, and more... those old days huh?.

yeah well whatever, i want to save at least one of the credit cards (the visa that is not cancelled yet.....) and my current bank account. Not sure if i can save the buying cards yet, i think i might need the credit cards for my future, if one day i fall into hospital bed credit card would be a fast way of getting money when needed. Lets see....

So i have right now 22 USD until the end of the month... in fact i spent 3 USD in going to cinema today... soo.... it is clear why i could not pay someone else's ticket. So i have right now 19 usd to spend in 11 days. Although you have to take into account my mother asked me to pay phone bill tomorrow ( i don't speak over the phone but the basic charge is about 9.91 USD monthly). She said she will give me the money back later.... so lets do it. I know my financial situation looks like shit, i am getting used to this shit since December 06. I am so glad of not being ill (i mean having no symptoms).... otherwise i would suicide. That would be already too much. I am lucky my sisters support me with some money when i am out of it, usually a week before every payment. Don't worry i am surviving... i have survived 6 months... i can survive some more....things will improve... they HAVE TO.

After paying all that i went to the store for our meeting, it was cancelled. It is going to be next Wednesday. I went online and ...something happened. Yesterday night i found by instance on internet someone i knew. I know this person since 6 years ago. Nice person, interesting, smart and sexy... but we have never really spoke a lot, we met on internet yesterday night by chance... it was just a coincidence... exchange jokes and stuff like that.. then.... the conversation turned a bit more ... intimate, talking about the possibility of having sex. (It seems i am way more sexy than i imagined before... huh?... or it could be because of the Hiv added value...). We didn't define if we would do something... we just teased about it, but i knew.. i had to disclose...

I mean even if have protected sex with this person, there is no risk of infecting her. No risk at all. Although i know this person knows some of my friends and as all my friends know.... she will eventually get to know about my status.. and that would be a mess... she would worry, she would complain, she would be terrified and all that stuff. So i better disclosed ... i sort of liked this person, not like a one night stand... this person is smart... it could have been something more (who knows) but it had to start right. We were chatting and i said something like:

"You know.. it is cool that we chat now and our conversations are always funny... and some times spicy... but i think there is something you should know. I usually say this at the beginning because i like to be sincere with other people... and well... you have to know ... i am hiv+"

I was cold while writing and was breathing fast and my heart was jumping... for God sake.. it is the first time i disclose to someone i sort of like. Fear of rejection is huge....

This person remained silent for couple of minutes... i though: she faded away!!!. Then she answered: "oh really?, since when". Then we started to talk about the issue. Ufff... well... this person has been living abroad in the states and it happens she had met some other positive people in the past, but it seems she was never involved with them, just like friends. So we talked and talked yadda yadda yadda... and i told her to go with me to the cinema and she said she could not, but that i could find someone else before entering the cinema and flirt so I could see the film together with that person. It sounds like rejection but in a nice way.... whatever. I assumed it would happen... when i don't say i am positive, people think i am sexy and hot... when i disclose.. they think i am untouchable... or "rather non touchable". It sucks.

Sandra my friend from Mexico was online with me, giving me strength in those moments and she told me "send that fucking loser to the hell!!! she does not know how much she is loosing!!!. You are a sun!!!!" I wish everybody would think the same.

I was a bit down afterwards and was thinking not going to see any movie, i don't like to go to the cinema alone.... but i did. I did it for me, because my happiness should not depend on others. And i am glad i did, the movie was nice... and even if you think i am crazy... i found a message on the movie for my life (yes God also speaks through cartoon movies...i mean.. why not? he is God.. he can do whatever he wants!!). There was a part of the movie when someone said "you are who you are, not who others say you are?". And it is truth... i am who i am. I am Juan Carlos, i have re found myself... i am person living with Hiv. I am NOT a person dying due to Hiv.... I am a cute (or at least somehow attractive) guy living with HIV.... I am NOT the Hiv monster people might think. I am person living with HIV who is able to love and have a normal life.... not the non touchable sick guy some people think..... I am a person living with HIV.... I AM NOT HIV, i am not the disease... i just suffer from it.

I have it clear, hope everybody have it clear now too.... if not ... i have lot of time to explain it to the rest of the world, because i gotta be respected and treated well... or i will make them respect me and treat me well. I know who i am and i will live like that, i will not accept to live the way others "think" i should live just because of having Hiv... now way, I have the Hiv, but the Hiv bug DOES NOT HAVE ME.... and IT WON'T.

Thank you Shrek, you reminded me today who i am, and reminded me I am the king of my own life.

Labels: New life, same illness

Artist: Seal /Song: Crazy /Country: UK

Hi, well.. i am sorry i took short vacations from blogging... sometimes one need space not to analyse stuff... but to live. Don't you think?

Well, these days have been somehow calmed.. i mean i have remained calmed despite several stuff around me. There are troubles at work, some internal fights... the good thing is that i am not involved , looks like i really learnt something about diplomacy while living in Moscow huh? . So despite the internal gossips and fights.. i am like nothing.

My niece has recovered perfectly from her surgery, i have been working... so i haven't seen her. But i call her twice or three times per day, poor girl. I have been fine these days, somehow worried because a girl from Thailand but living in Sweden messaged me from poz forums ( i don't know why everybody messages me....). She moved there with her boyfriend but they broke up... and she found out she is infected. She does not speak good English, so we have been trying to communicate, i have tried to give her some ideas on how to find help, she is having medical care for free but not having a job... damn... things are difficult for us sometimes, i am having a hard time but at least i have my family next to me.. she has none, even almost no friends. I told her to find a support group over there... i hope she can find some people giving her a hand.

These days there was a constant coming out in my life .... the question if i would ever find a partner.. i mean a formal romantic relationship with anyone. I have met some Hiv+ people who has done it, and not with a positive girl, sometimes with a negative one. I guess in other countries it is much more common the disclosure stuff... i mean... Hiv/Aids has been around for over 25 years right now in the USA and other countries, when you meet someone and this person tells you "I am seropositive" some people don't get surprised since they have known lot of seropositives before. I have already mentioned here i have met about 6 seropositives people before my diagnosis.. but i didn't know. None disclosed. I know something, i can't date a girl without disclosing my status... it would not be fair.... the question is... which girl would like to date a seropositive guy here in Ecuador? (off course i am nice and charming and smart and really good lover LOL, but i mean.... not taking into account my added value).. really in black and white... who would date a seropositive person here in Ecuador?. There are cases i know... but one in houndred thousands... statistics are not "positive" about it.

It has been 2 years since i broke up with my last serious relationship, and i was actually fine... i am not this guy dating and falling in love all the time. I am more cupid than romeo. It's just that these weekend i was thinking about it... i saw a couple of young boys buying in the store where i work, and i though:... "they look nice. I would look nice with someone too....". I must be crazy huh?. I guess i can survive without someone... i was just thinking it would be nice to have someone to talk to, to share my life with... or what rest of it.

Tomorrow free day!! ( sorry it might sounds like i have many free days but believe me it is not, i just have them during weekdays that's it). I am planing to go paying the bank stuff, then hopefully go to Social Security Hospital to get my meds... (even though i just think it is a waste of time....) and then i might go to my sister's place or stay home.. i have a meeting at work at 7pm. They always do meetings on my free days... July is coming... my next appointment with Dr will be on the first week. I guess it will be short, my health is almost fine... few stomach issues here and there but nothing to worry to much (i think) my next CD4 test would be on October this year (in case i am lucky enough to have my CD4 done twice per year... otherwise i will have to wait until next april) if the numbers are fine i will continue with my "normal" life. Otherwise the next part of the trip will start.... ARV meds.

By the way, there is a med called Viracept (Nelfinavir) that was recalled from Latin American market because it was discovered it was not produced with quality enough:

The recall of all formulations of Viracept has been generated by the presence of estér etílic of metanosulfonic acid in the active substance. The effect of this substance in humans has not been studied, even though researches in animals show that estér etilic of metanosulfonic acid is mutagenic. Although our report of risk evaluation shows that potential exposition to patients and the following risks is low. Anyways for the well of patients we have decided to recall all formulations of Viracept possibly affected. Letter Addressed from Roche Lab. Costa Rica to Agua Buena Aso. June 7th, 2007

The fucking shit is MUTAGENIC!!!. For God sake!!!.... don't we have enough troubles with Hiv??? Now the losers of Roche Lab. manufacture meds in bad state.... I wanted to kill them. The meds at least in Ecuador are totally recalled, none else is taking them... and i read that some organisations from Latin America will demand Roche Lab for their negligence. The worst part is that Viracept was part of a combo... it means it is part of a group of meds that have to be taken together EVERYDAY at the same time otherwise the treatment might not work. If treatment does not work or if it is not taken properly... virus will mutate (as well) and become resistant to that combo, which implies patients might have to take another meds which could be stronger....what a shit!!. Although it is not all, here in Ecuador they have recalled all viracepts but have not offered any other option in order for patients to keep with their treatment. I just got this email (it is good to be within the email list of the Coalition of Ecuadorians living with Hiv/Aids):

Dear camarades, the Infectology Diseases Hospital Dr. Jose D. Rodriguez Maridueña, following orders from our Ministry of Health through the chief of the National Programme of Hiv/Aids has proceeded to recall the mentioned medicine. Our technical committee of Hiv/Aids will study during this week every patient that were following such scheme in order to suggest them the best possible option with responsibility. Letter of Dr. Patricio Hernàndez Manrique Coordinator of VIH/SIDA. Infectology Diseases Hospital DR. JOSE D. RODRIGUEZ MARIDUEÑA, June 16th, 2007

Yeah well the other losers "will study during this week" all cases, animals!!! people cannot wait until their bureaucratic medical asses seat to study cases this week. YOU SHOULD HAVE DONE IT THIS WEEKEND MOTHER FUCKERS!!!! People cannot skip their treatment a single day!!!!!!!!!!!!!!!!! Stupid Drs!!!!. I wrote them back complaining.. but well.. i am not even sure if they will ever approve my letter (yeah... politics work also at the moment of "saving" lives).

They say they will study each case cause they DON'T KNOW HOW TO REFORMULATE THE TREATMENT. In other coutries you take genotype tests (or something like that) that shows you wich strain of hiv virus you have and to which arv meds it is resistant to.. but in this fucking country (i love this country but the Drs and hiv programmes here are just plain bullshit) those tests are not available... so what happens? The thing that happens is that Drs only guess what could be good for a patient, they dont know if the patient will react properly to the treatment.. the patient my get worst sooner while they try and try and try until finding the right type of med. Therefore Drs are so afraid of their lack of knowledge that a single Dr is not allowed to decide if a patient should change scheme of treatment (combo).... they have to be in a committee to take the decission, so in case the patient dies... no Dr is direclty linked to that death. So much fun, huh?

I am so angry and so frustrated.... i can only say this... i will do my best to stay without meds as long as i can... otherwise those losers Laboratories or those losers Drs, or those losers of Social Security Hospital WILL KILL ME!!! and not the Hiv.

Labels: New life, same illness

Artist: L'Âme Immortelle /Song: Life will never be the same again /Country: Austria

Yesterday night i was talking to someone i know since over a year ago about having sex. It would be safe (i am very cautious about this and i know this person too) therefore there was no risk of infecting anyone and no need to disclose my status... but then this person asked me about engaging in a risky activity (no sexual intercourse related).... I was about to answer: NO!. That would have been my direct answer in the past, i was very cautious about it. I never did risky senseless stuff, because i knew risk of infection is not high but not low while doing these things. Then i realised... i am already infected.

It was a weird feeling, somehow a mixture of release... because i don't have the weight and the fear of getting infected on my shoulders now.... i am already infected. I mean this person cannot infect me with Hiv, i already have it. Although i also felt sadness... because i was somehow careful with my sexual activities in the past... i never got involved in risky stuff. I was not the crazy guy doing all sort of unprotected things or sharing needles while taking drugs... like playing with the Russian roulette. In fact... i am pretty normal safe playing type of guy. If my calculations are right, i got infected last time i had unprotected sex with a person who was my platonic love since the first day we met (over 3 years ago). This person was diagnosed a month after our last sexual encounter, and didn't tell me. I got infected by having sex with someone i really liked and loved. That's sad .

It feels weird... and i am a bit down, i mean... i was careful... i was not looking for this... and when i felt i was with someone who was safe.... it was actually falling in the hole... The special moment i shared with someone i loved .... became the beginning of this Odyssey.

What was my answer to yesterday night question?... Maybe. I know i cannot get infected of Hiv now... but i could get re-infected (and yes... that's possible). Hiv virus has different mutations (strains)... some of those develop faster, some are more resistant to ARV medicine and so on. Having more than one strain... or receiving another strain while i am not on meds might end up in me developping resistance to the treatment. It would be not only a problem.... it would be BIG problem. Plus it is not only about the Hiv thing, what about all other sexually transmitted diseases? or HCV (Hepatitis C Virus) and so on and so on.

I know the person i was talking to and i knew we both liked to play safe all the time... so i knew this risky stuff might not happen and in fact it didn't. Plus, i just decided i won't trust anyone... despite how safe this person's behaviour/activities seem to be.

Since diagnosed, i was not put in a situation i would have to decide if involved in a situation that would have been risky in the past but that is not so risky for me now. I mean, in this specific activity there was no risk of infecting this other person, i would have been the only one in risk of infection.... but i am already infected. Some people after infected and facing what i faced yesterday night, get the strange feeling of freedom... they think: "I have hiv, so i can involve in risky activities because i already have it" or also think "I have Hiv+, i don't need to protect my health now.... after all... i am going to die".

I was never exposed to that situation before.... this is a trick, it is a tramp where most of us Hiv+ fall in. I know i am going to day some day, but at least yesterday night... i didn't force that day to come sooner.

Labels: New life, same illness

Artist: Bjork /Song: Violently Happy /Country: Iceland

Quite happy today!! why? no reason actually, in fact the question should be... why not?. It was a cool day at work, tomorrow i will have free day and the day after as well and i am alive and healthy!!!! Isn't it enough reason to be happy??! I saw the sun today!!! I am learning to enjoy every single thing there is for me on this earth. I am in peace with myself and the Universe right now.

My stomach is getting better and better. Tomorrow i might do some stuff at home, then some kardex updating stuff at work, but i plan to finish it fast so i can spend most of the day at my sister's place... perhaps sleeping. I admit i have started to love it... i don't feel weak right now, but it is so pleasant to be sleeping yummie yummie!!. i will only have to be careful because my whole family has got flu... mmm well i hope i won't get it.

I like Bjork's songs, and i am sure i am not the only one. This one i chose today has a special phrase that i like right now:

"This small town hasn't got room for my big feelings"

and yes, my Happiness is BIG today!!!

Labels: New life

Artist: Dido /Song: See the Sun /Country: UK

Yesterday was a calmed day, few things here and few there. I would say i am 85 to 90% cured from my stomach, i expect that between today and tomorrow i will be totally fine. I am glad that these days i am finding lot of optimistic songs over internet, they fit quite well with my mood right now. I haven't paid to the bank yet, i am still not in list. Right now i also used part of the money i had saved to pay, but no problems, middle of month is coming so i am about to receive the other part of my payment. Once with it i am thinking what else to pay because is not enough for all my debts ....mmmm... gotta stablish priorities (and prepare to receive more phone calls from banks....).

I haven't started looking for another job. Some times my mind plays against me in this, but i need it ... so i will have to start moving my latin ass.

Anyways, whatever happens.... I promise you, you'll see the sun again!!

Labels: New life

It was cool day, at noon i cam back home from my sister place and called Javico to see if he wanted to join Diana Patricia and me. He agreed so i picked him up and we met Diana Patricia at Malecon around 5pm. We spent the rest of the afternoon walking, sightseeing, joking, talking over a cup of hot chocolate/cold tea. It was nice, and none said a word about Hiv. I felt quite ok, so that's it... sometimes simple easy days are just... awesome.

I needed one of those. Have a good night.

Labels: New life

Artist: Dschinghis Khan /Song: Moskau /Country: Germany

I had to blog again. Guess what? i turned on tv... and was zapping without much interest .... a movie, scientific data, a concert, other movie... hold on!!! that concert had something written in cyrilic on stage??? in Ecuadorian local channel???????????????? That does not happen.

Although i was right, in Mundo Canal they were broadcasting the Легенды Ретро-FM 2005, off course, you would say... what? Well Легенды Ретро-FM = Retro Legends FM concert (i translated without any help... i haven't forgotten my few Russian!!! Kruto!!!!Kanyeshna!!). I had actually never heard about this concert so i was curious... there were lot of singers performing... off course i didn't know most of them... suddenly.... Oh My God... i saw a camell on stage.... and some people dressed in ancient clothes....

Dschinghis Khan!!!!

Again you would say... who? Dschinghis Khan (pronounced "Jingis" Khan ) is an old pop group, originally from Germany, created on 1979 to compete on Eurovision song contest. Appearing at the height of the disco boom and following on the heels of other German-produced bands such as Boney M, Arabesque, and Silver Convention, the band achieved wide popularity throughout the world, especially in Europe, Russia, Australia and Japan, though they went wholly unnoticed in the United States. Their songs invariably were themed on historical figures and exotic cultures and locales. Dschinghis Khan are also known as "the mongols who amazed Europe in Eurovision". Here there is a link with the story of the group (Spanish)

The band, now assisted by young singer/dancer group "The Legacy of Dschinghis Khan", has a tour scheduled for Winter 2006 - Fall 2007. In the tour, their show will consist of "Cirque du Dschinghis Khan", featuring other performers, including Mongolian circus acts. Their announced dates are listed on the official website of the group and are subject to change. Their planned German national tour dates in January 2007 will coincide with the release of their latest CD called "7 Leben" (7 Lives). It will be their first release since 2004's Best Of compilation "Jubilee".

Dschinghis Khan is the German spelling of Genghis Khan, the name of the historical figure who founded the Mongol Empire.

As some of you know my likes regarding music are wide, but believe me, I have to tell you this... you have to see them on stage.... that's power!!!. I actually found some videos from the original group and the current one, i hope you enjoy them. The performance skills and the power the give to their songs..... left me astonished.

Dschinghis Khan performance of "Dschingis Khan" at Eurovision 1979

Dschinghis Khan performance of "Dschingis Khan" at Легенды Ретро-FM 2005

Yeap, with the years they sound and perform even better.

Dschinghis Khan performance of Moskau (English version the original one is in German) (i wanted to learn how this guy in red danced but i could not, even though... i know few steps now :)

"Moscow, Moscow, drinking Vodka all night long,
Keeps you happy, makes you strong, ho-ho-ho-ho-ho, hey!"

Dschinghis Khan performance of Moskau at Легенды Ретро-FM concert 2005. AWESOME PERFORMANCE HUH?

I am feeling so much better now, for some reason everytime i hear a Russian song or get in contact with my remembrances of living there.... the strenght they taught me comes to my life again. I bet none of my friends there knew how important my year there was.... it has made and still makes a huge difference in me. Spasibo Bolschoe moi drugs, Ya lyublyu Rossia (i wish i could find the russian characters in this laptop).

and to finish.... i want to show you a pic of the most incredible group of individuals and perfect russians dancers that worked with me during a year... and made me feel proud of being russian too.

I am so proud of being partly Russian and have been worked with these great guys. ok, now i can finally go to sleep .... 03.44am

Official site of Dschingis Khan Dosvidanya!

Labels: New life, Personal, same illness

Artist: Alanis Morissette /Song: That i would be good /Country: Canada

Alanis Morissette and Sade have always the right words to describe how i feel myself some times, and right now i feel like this....

that I would be good even if I did nothing
that I would be good even if I got the thumbs down
that I would be good if I got and stayed sick
that I would be fine even if I went bankrupt

that I would be loved even when I numb myself
that I would be good even when I am overwhelmed
that I would be loved even when I was fuming
that I would be good even if I was clingy

that I would be good
whether with or without you

Feeling down process has begun... Tonight is officially one more low night in my life.... I am still sick. It is sort of normal to feel down when you are suffering for something during long time.. it affects you emotionally.... i guess i am not an exception. Stomach is still weak and the same. Few mins ago i was at toilet and lost lot of liquid... it feels like i lost my life everytime i go there.... spontaneously i said "God take this curse off of me!" then i realized what i had said... yes, sometimes this feels like curse, the diarrhoea thing. I feel i face the possibility of dying soon everytime i go to toilet and lose lot... really lot of liquid. I feel like if death would be in that moment in front of me.... and i am afraid. I know i might not die today or tomorrow but this situation and the illness scares the shit out of me (and yes i always find the right expressions at the right time, huh?).

I am at my sister place right now, blogging from my laptop... or well the laptop that will be finally mine after a month hopefully. I am about to finish paying it.... so glad, this laptop (that i am about to finish paying), the pocked pc (that i already paid) and the Hp desktop computer (i haven't paid yet) are the only things that last from my good times.... when i used to make around 700 usd per month. I remember my goals were... laptop, pocket pc, and credit cards... lot of credit cards....just for fun. I know it is not smart but well... in that time i could afford it, so i though yeah... i mean.. why not?. Now i know why not. I am trying not to loose everything i gained in those times.. even though the credit cards shit is almost lost.... i hope i can afford to keep my IT gadgets. It is not only vanity, for me it is the physical sign that i once was successful and achieved my goals in professional life. I am not sure if i will ever do it again, with such a weak health... but i don't want to loose what i gained before.

After blogging in the morning and solving stuff at home, my sister called me and told me she would pick me up to bring me her place. She is very nice, she knows i was free and ill... and well... what would i do home alone after all? So i came with her, we went shopping first to the supermarket. There i found an old friend from High school, hey that's so cool, we talked. His nickname was Quintin, he is a cool guy, he is Christian, and is one of those guys since you talk to him... you know he is not freak, it was a cool conversation after mmmmmm 11 or 12 years? It was cool. I didn't tell him i am poz, i don't need to tell it to everybody. Plus i feel sometimes people treat me different just because i am sick with this. I don't like it, i want to go back to be myself... in a social way at least. I used to be very popular guy , that was the good part of being red haired in a latin country, as you are different everybody recognizes you. I feel i lost a bit of that... i am just enclosed in my little world right now.... ill and fearing the death.... what an end for me huh?

We finished shopping at supermarket around 3.30pm and went to Duran to my sister's place. In the way i fallen slept.... i don't know when... i just woke up when we just arrived. That's also not normal in me... i was always active-sporty-never-resting-never-ill-always-funny-party-hard type of guy (this multi-forms of expressing things in English are unbelievable!!! I love them!!). We arrived home i had lunch, then automatically went to sleep... around 4 or 5pm. I could have slept until tomorrow but my mother woke me up at 9.30pm. My sister, her family and my mother were leaving to attend a Christian ceremony that would last all night long (wakefulness) and asked me if i wanted to go. I am a deep believer... but no.... i could not go there... no while i'm feeling so weak, plus having weak stomach. To stay awake all night would have been worst to me i know God understand me.

So i am home alone again.... but in another house. Anyways being here is better, there is electricity, no problems with water, air conditioner, TV cable, tasty food... i am like a king. This is just how i would have expected my life to be if i would not have had Hiv. Having a good normal life.... no worries would be nice. Well... nothing is perfect. Sometimes i feel that spending my free time with my family now is like taking advantage of my last moments. When i was in AIESEC i was never home, always trying to change the world.... and years after.... i just find myself trying to keep my life up. Perhaps if i knew this all before i would have never traded my time with my family for anything in this world.... not even making of it a better place for others. But i am glad i somehow contributed to make a better world, so now if i have to leave... i will be sure i did something good in life..... and i rather stop thinking about dying right? it is weird and i know i am not going to die soon... i know i am not going to die soon.... i know i am not going to die soon... i gotta write it in a peace of paper!!!! and repeat it houndred times.

I just talked to Walter, a Peruvian friend i met through poz forums, he so cool man and have been living with hiv for 10 years. He recently left hospital where he spent long time after suffering some infection in his lungs. He is ok now, he is a musician and was giving me some advice about food and about how to solve this stomach issue. It is cool, i somehow don't feel alone. I will have dinner and then turn on the tv and see something cool in the cable.

I talked with Diana Patricia and Javico, we might go out tomorrow and visit a new touristic part of the city that was just opened to the public (Santa Ana Port). Life goes on....

Labels: New life, same illness

Today i woke up feeling a bit better, yesterday night diarrhoea seemed to be disappearing... i though perhaps today i could skip imodium, it has proved to be very strong..... but today when i woke up and went to the toilet (i am like a cat... everyday same place, same time).... i found diarrhoea is still there. It has not changed much.... i am just not that "fluent" because of the imodium.... mmmm.... i will keep on imodium, i though i would be ok by monday at least.... now i think it will last a little longer. Today it is the 5th day of my illness..... too long huh? yeah i think the same .

Still with it i am not that worry, perhaps i should but even though i am loosing lot of liquid i don't feel myself weak yet. I am somehow eating same as usual... and with imodium i am not going to toilet 5 mins afterward, which is a good sign. My body is assimilating some nutrients from food i hope. It would be more dangerous for me if i would feel myself weak... that would certainly means my body is wasting. Off course, this is just my perception, i am not a Dr.... perhaps if a Dr sees me he will order serum or so. Ok, so my plan is to stick to the meds routine.... 1 imodium and 2 lactobacillus per day. I hope to be ok by monday or wednesday next week. If it does not happen.... i might go to see a Dr. Ok ok ... i know you think i should see a Dr now, but i think it is nothing serious, it would serious if you would have 5 days diarrhoea... but i am hiv+ ..... that will become sort of normal for the rest of my life. This is a path i have to walk carefully... as you can see.... there are many chances to fail.... and failure would eventually mean hit hospital bed.... which i am not up to.

I will also try not to think about this much, stress just makes the situation worst. Hiv+ people's health is very susceptible to stress.

I am home now, solving some stuff. Making some changes with the big desire to sleep, i will be able to do it in the afternoon. Didn't make much plans, after all... one cannot plan with a weak stomach huh?. I'll mostly stay home.

I had been thinking in finding a part time job to help me covering the financial challenges i am facing (banks are still calling me....), i was just afraid of my health... if i would get ill while starting a new part time job it would be suspicious.... well... i am unable to find a new job just by now. I will buy newspaper tomorrow and see if perhaps next week i can go delivering my cv somewhere once i get over this (i hope). I was just thinking in something silly.... Do you know that here in Ecuador once your boss gets to know you are Hiv+ you are fired almost immediately?....even though it is illegal. My question is... how can a Hiv/Aids living person afford medicines and so on without a job?. People sometimes don't reflect about their actions. Hiv/Aids living people should keep on working, first because they need it to cover their health issues and second because they are not a risk for anyone. I wish someone would understand it. There are few of those... i wish there would be more.

Today Valentin wrote to me, after several days of my e-mail telling him all about my illness. His e-mail was something like: "So sorry you are doing bad, i am doing ok, i will send you an email telling you how good i am so you can cheer up". LOL. At first i got annoyed.... i mean.. come on guy, you are my best friend but i don't need anyone telling me i am doing bad... i know it. Plus, i am not doing bad... come on, i am just... having it harder. That's it. Then i though... aha... you want me to read how nice your life is... thinking it would make me happy? when it will actually make me see how shitty my life is, huh?. And i just then understood, and remembered some situations i faced long time ago.... while living in Moscow. It is so funny, but there is a big difference on how people think here and over there, even in logical ways of dealing with things... i had forgotten it. I know Valentin is sincere and has a good heart and good intentions, well... perhaps reading about someone else's happiness will help me realize i can recover my own, don't you think?. He is such a great guy, believe me he is.

Well, just to finish this post i hope you liked the song i posted today. Francis Cabrel is the most popular French singer in Latin America, he is a truly poet and has great songs with deep meaning that are able to touch all hearts. He is also singing in Spanish so that makes him cooler .

Ok, have a good day, peace and love

Labels: New life, same illness

Artist: Lauryn Hill /Song: Oh Jerusalem (MTV Unplugged) /Country: USA

Well, at least today i didn't have much stomach ache... but diarrhoea is still there. Acute diarrhoea. I got to made all my stuff in the morning, i couldn't pay the debt again... ... well better for me, with my mom arrived late to the opening ceremony of this training for people interested about Hiv/Aids, it had already finished. No probs. She brought me lunch so we seated at the Malecon and i ate.

I told her... "i have diarrhoea"... she looked at me saying "again???" it was same thing my sister told me the day before... "again????". Yes, again, it is not normal on me... and they know it... but well.. i am just doing a back up with them. I don't want to get them worried but this newly diagnosed guy with a plan knows he needs a hidden card, just in case something goes wrong..... my family is that card. I am giving them a signal of warning: yes the bug is moving and bothering me.... At the same time telling them i am fine, i know how to fight it.... but.... if something happens to me, or if i fail to stop the diarrhoea and start loosing weight without noticing it or control it .... they will be ready to help me and won't be taken by surprise. Also.... i have heard of cases of people getting really bad and weak suddenly... weak enough not to be able to reach hospital by themselves.... so they call someone... a friend, someone... we need someone near.... so that person will move us to the hospital when we cannot do it, that's one difference between living and dying..... if you live, it is because there is usually someone next to you giving you a hand....... or two. I know that if one day i am too weak... i just need to call my sister and say "help..." i don't even need to finish the sentence... nor to explain anything... she or my mother will come from the other side of the world to pick me up and take to the hospital, I am way lucky... other's cannot do that. What would you do if a friend calls you right now and tell you "help me i am ill... i have aids". what do you know about the illness? will you fear let you think clearly? what will you say to him? how would you react? whom would you ask for information? would you understand if he has a critical status or if he will recover?... will you move your ass and start doing something despite questioning yourself "what do i do now"?.... would you excuse yourself and hang out the phone?

That's when this stupid discrimination becomes criminal. Because many people around the world has none next to them... they cannot tell their parents, couples, friends, brothers, uncles, co workers, teachers, bosses about their illness. If one day i am really sick at my job... they will not know what happens to me... nor what to do.... nor whom to call. Why? because i could not tell them i have hiv and my health is weak and i am having this or that specific problem... "so in case something happens to me... make sure of doing this or that, or giving me this med or that one"... i cannot tell them cause they won't hear me. They will send me away before i ever begin to explain. It is criminal when something stupid and without a real reason puts other's health and life on risk. Discrimination toward Hiv+ people is a CRIMINAL act.

I have a friend called Luczi, she is mother of a person living with aids and contacted me through my hiv blog at poz.com. She asked me something very interesting yesterday, it was about if living with Hiv was like a long agony.... i don't think so. I don't feel i am dying.... i just feel it is getting hard to keep on living. Which might sound the same but in fact it is not. I don't think hiv is going to kill me right now... i just get tired of having so much medical issues specially because i was always a healthy guy. Humans are animals of costumes people say... so perhaps after long time i will deal better with the side effects of the illness and the medicines.... or perhaps no. Even if it sounds unbelievable, i have read posts of people having such strong side effects... they say they are worst than illness itself... some of them struggle years and years .... some others not. Some choose another way out... not taking meds at all, which can be translated as SUICIDE.

Hiv/AIDS cannot kill you, thats for sure, but it takes away all your defences so in a moment.. without meds... without stopping the virus... some simple and non harmful organism for most of the people could kill you (example: Pneumocystis jiroveci responsible for Pneumocystis pneumonia, or PCP). I bet you didn't know about this one, huh? neither did i.

Some people have decided to suicide. It takes them... years, or sometimes months before their day arrives... and they know it. They are not crazy people choosing to die, they are just people who cannot stand the illness no more and take a decision about living.... or not living anymore. I have learnt something through these exactly 90 days of my diagnosis.... the horror of pain can go beyond of what can be said in words.... and way beyond of what a human being can stand sometimes. None of you could understand it... i didn't at the beginning... but now i do. And i know... to choose passing away is an option to me as well. Yes, it is, i know it and i thank God, this option is over there... because if one day... i feel i cannot get over this... i can't stand it anymore.... i could choose to past away. And i don't feel guilty, nor ashame of saying so... i guess it is my right to decide about my living and about how much pain i want or can stand.... it is my only truth that none else will understand cause you are not facing this. I have even told Claudia, my psychologist, who asked me not to think about it.."once we are in that moment, we will see". My mother and sister does not know my way of thinking about this. This one will be my last card, the very very very very last one... and if i am lucky/strong enough i might never use it.

So far so good... some people say, i want to say that too. And i am working on it, but i want you to know we all should respect pain... and all those who face it, not only hiv+ people... but all those suffering extreme situations. I have always said Hiv+ are fighters... and i have always said i don't want to survive but to live.... but i am afraid ... i have to admit... i feel like surviving this virus right now. I feel like a survivor, look at me... diarrhoea... something stupid that all of you could solve in a day or two... is bothering three days and could actually send me to hospital bed. And what am i? three months diagnosed? .... i though i would need years to face situations that would be really dangerous but no... this shit (way literally appropriated ... huh?) is dangerous from the beginning. Well, i can be a survivor perhaps, but it does not mean i am not a fighter. I AM... and the best is that i am a stubborn fighter... those are the worst!! because we don't surrender easily.

I just wish some of you would be more open about this issue not with me, because i am not near you... and i won't need your help (none knows) but... about others around you... there will be in a moment someone who is hiv + next to you... and you won't notice but your actions and words will tell this person if you will be there for him/her when the time for showing real friendship comes. Think about it.

I also would like you all to understand... discriminating Hiv+ is not just, apart from being criminal. Look at me... we have so many troubles... so many worries and fears... do we need more?. You answer this.

So well, lets examine the landscape.... i took an imodium today and by tonight it had already done its work. No more diarrhoea but.... it left my stomach constipated. That's the point with imodium it cuts your diarrhoea but it also block your body to expels anything. So... imodium once per day will be fine it seems. The other issue with imodium is that it does not solve the problem of diarrhoea, thats where Lactobacillus comes in. I took a dose of Lacteol Forte tonight, it should be working by tomorrow morning... because right now i am having stomach ache. ...mmm... hold on.. i gotta go somewhere.

Ok i am back, so like i was saying.. by tomorrow the first effects of meds should be showing. In the mean time i will also be on diet, no fats, nothing made of milk, etc. Uh Oh... unexpected situation right now... i am starting to feel pain in my kidneys.... like if someone would be squeezing them. I am not joking... mmm... where does this come from? last time imodium didn't bother my kidneys (eventhough it was emphasised in prescription i have to drink extra water while taking these pills). It could be gases mmm... ok, i will drink a big glass of water right now and see how i wake up tomorrow.

Changing topic, i will finally have the weekend free!!! that's actually very good. I haven't made plans yet but i want to do some re organising at home.. lets see. I have had some Artem's Fans requesting me another song from him, so here it comes. The song is called "Where is my lovely" (MP3 4.30MB Right click, save target as). For all those who don't know about Artem Sennikovsky is a friend of mine (yes, in real life) who is Russian and a very talented singer (and hiv+ friendly by the way)... got such a voice!!. So download his song (that is not available on stores yet) and judge by yourself... i know you will like it. 2.32am here... gotta go to sleep ( i have to do something not to go to bed so late....). Good night.

Labels: New life, same illness

Artist: Presuntos Implicados / Song: Gente / Country: Spain

I am still sick... sick and a bit angry. First i went to have a haircut today... and just when this man was about to start (i go to a barber... you know.. I am macho style) ... he got some bad news.... i though "uh oh....i hope he is not going to mess up with my hair". He did. I don't like how it ended up, it is too short. I had to use a cap the whole day.

Then i had to pay the first part of the financial agreement i signed for my debt with Banco Centro Mundo, but they were just bought by Banco del Pichincha and all their info is a mess. Off course i would think "great! they don't have me in their database!" but come on... lets be realistic. I should have paid it yesterday and i could not pay even today.

I have been sick the whole day... with acute diarrhoea. I have made my mind... if it does not disappear by tomorrow morning i will come back to imodium and lactobacillus. I have had lot of pain and gas in my stomach . I didn't feel well the whole day. At work i had to simulate i was ok, they cannot know i am ill.... they will start gossipping "perhaps he has aids". It is an stupid costume that Ecuadorians has developed in the recent years...they think:

• if you have flu... perhaps he has aids.


• If you have diarrhoea.... perhaps he has aids.


• If you lost weight..... oh my God he has aids!!!!


• If you say you are ill..... oh my God he is going to die of AIIIIIIDDDDDSSSSSSS!!!!!!!!

It is actually way stupid, and it is not my imagination... i know some aiesecers though "JuanCa has aids!" as soon as i said i was ill. Come on!. Ok, this time you were not totally wrong, but still it is way stupid that people start making images in their mind... about someone else's life or health. LET ME BE FREE. Well, i had to simulate the whole day... and perhaps that's why i got fever.... and stomach ache.... but i can't tell anyone.... i can't skip working hours, nor tell others i am ill... they will start to gossip and i risk my work. Now i remember Scott words when he said: "I have always felt there is something seriously wrong with living with an illness you couldn't feel comfortable talking to others about". Aha, if one day something really bad happens to me... i can't tell anyone... why? because none will understand. None will help. All because the lack of understanding of most of the people around the world.... i am angry!!!!!. I am ill... can't i have just a little respect so i can have a normal life????? can't i live without being hidden to all people around me?? without fearing someone will say "Oh JuanCa has aids!!!!". It is cruel. I am ill... let me rest... let me be in peace... i don't need gossips nor silly fears around me. Don't i have enough troubles trying to stay alive???????? I DO!!!!!!!!!

This is the part i hate the most of this illness... when people don't help but bother.

I read at poz forums that this diarrhoea stuff is not going to go definitely... every poz around the world is having some periods of diarrhoea several times during the year. It seems the virus works hard to kill the intestinal flora in our stomach, causing we cannot retain food... nor liquids. If diarrhoea is not stopped people develop "wasting syndrome" or something else. Now you know the secret why some poz dies very thin.... together with the lost of water and all proteins from food and so on....you start loosing muscular mass.

Although i am not going to let that happen to me off course, i am a newly diagnosed-smart-guy who has a plan. So tomorrow morning... Imodium and Lactobacillus will come back to my life to help me. Looks like i will become good friend of them.

Everything with this virus was calmed until now... i though in fact it had stopped bothering me.... and that i could spend some years feeling ok.... but no. I know the party is just starting.... it is going slow... but Hiv is already dancing. Gotta learn to dance too.

I am frustrated... and angry... i want to break something.... just in case you didn't notice.... i have always been healthy... my whole life... i had a stone made stomach and i was able to eat anything at anytime... and now... i am just not myself anymore. Prior to my diagnosis I didn't have diarrhoea in a year or more... and this year i am already having two... first one lasted a month and a half... YES... A MONTH AND A HALF.... and now this one. I don't like it. I hate it. I want to be healthy again , i want to be me... one more time . .

There are more troubles coming. I used to have some dermatological issues on my scalp. Dandruff. It was actually not severe.. so i didn't worry much. Once diagnosed poz, i was told any dermatological issue one has... becomes worst. I went to see dermatologist but without success (by the way... did i mention I didn't receive my meds at Social Security Hospital yet???... they say they are still out of stock... Bastards!!!). Well.. today i was trying to find some info about it because the issue is becoming very aggressive and i read this:

Seborrheic dermatitis is a common disease that affects 2%-4% of the general population. However, up to 85% of HIV-infected people experience seborrheic dermatitis at some time after they acquire the infection. The cause of seborrheic dermatitis is unknown, but many investigators believe the yeast, Pityrosporum ovale, plays a role in the disease. It is further postulated that the alteration of the immune system in HIV-AIDS changes the way the skin responds to this yeast leading to the higher rate of infection. The Effect of the HIV Virus on Seborrheic Dermatitis

Well... the guys at poz gave me some advice on how to work on this issue... it is annoying.. to know one cannot be cured of not a thing, but several ones. I guess that's what bother the most... it test your tolerance.

I wish i could keep on writing but it is 2.31am and i am home alone, tired, with fever, gas and stomach ache. i guess i'd rather go to sleep. I didn't eat tonight... my stomach was in too much pain. Tomorrow i have to wake up early to open the store, then go to the bank to see if i can finally pay that shit, then my mother want me to go with her downtown for the opening ceremony of a training for people interested in knowing more about hiv/aids.

By the way, Claudia wrote to me and gave me the dates for my testimony during the sensibility sessions.... to say true... i don't know what i will say... recently i have just found myself blocked about this. I feel tired and annoyed of thinking about it and remember it. Perhaps it is just the days i am going through.... i have to calm down. I am never in good mood when i am ill..... and as i cannot be cured of this.... i will remain ill forever ...It's so frustrating!. Good night.

Labels: New life, same illness

Play this song!!

Hi, i just wrote to Valentin and told him all.... well... i didn't really wanted to talk about it, but it was ok to do it after all. Claudia told me yesterday that sensiblity training will be on 25th this month and asked me to confirm her if i would go. I said Yes. She was happy and thanked me.

There is something wrong with my health since yesterday.... diarrhoea came back again... i don't know why, because i have been sort of careful with my food. I could not sleep properly because of it, i was feeling sick yesterday night and today i am still with diarrhoea.... my stomage bother me. I may have ate something wrong... but i don't know what... perhaps i should really stop eating hamburguers

Yesterday, two people who posted at poz with some doubts if they were infected or not added me to their msn messenger (without asking me first) and talked to me. They were very worried about being infected, but well... luckily i made them understand their situations were not risky at all. It is good to help others. And we became friends after that chat, isn't funny how friendship starts sometimes?

I am not feeling ok today... my stomage hurts a bit. I hope i get better through the day... i don't like to be ill. By the way, what about this music thing in my blog? isn't it cool? Off course it is!!! I LOVE IT!!!! And now i will make you listen some of the best singers/song i have discovered in this 30 years of good living

Labels: New life, same illness

Valja wrote to me!!!!!!!!!

I was worried.. so wrote to him the day before yesterday to see if he had received my letter.... i was scared.... i didn't know what to expect... when i saw his email tonight... my heart jumped and i was afraid.... but he is my best friend.. come on, life cannot be so bad.... i cannot lose my best friend in this world as well.... then i read this:

Hi, JuanCa,

I read your last week letter. It's a pity to know and I understand how deeply you are depressed, but it is doesn't mean that my friendship to you is changed somehow because of that.
Life changes, but I don't. I'm still same man which supported you in Moscow when you needed help and I'm ready to do it now!
Comme on, man, how you could think I can turn away from you because of that?
Pls write me detailed letter and explain everything!

Hug you strong,

Valja

yes, he is a great guy.... this is just a single prove why he is my very best friend in the world. I am happy!!!!!!!!!!!!! Today was such a happy day!!!!

Labels: New life, same illness

What if God was one of us?

Yes, i know it is a song from Joan Osborne but also soundtrack of one of the best tv series i have seen "Joan of Arcadia".

The story behind the Tv series is quite nice and particular. A girl who talks to God. Aha, to God. Although what is really funny and interesting is that Joan (Amber Tamblyn) is not the type of girl one think God would approach and say "Hi, I'm God". She is nice girl but not a prospect of Saint. She is a bit lazy, have never been great student, just like any other typical girl, but Joan care for others well being. And well, the fact one is not perfect does not mean God won't to talk to us. In fact i think God talk to those lost lambs even more than all others.

God asked Joan to do some things we would find strange.... gardening project, learn chess, get into advance chemistry class (well... i guess we would expect God ask us to do that) but much more... God asked Joan to feel... to relate with others and get into other's lives.... and without a clue of what she was doing.... slowly she realised how a small movement.... can make a big change.

It was broadcasted originally by CBS in Usa, with success but for some reason they just stopped the filming at the end of the second season. Here in Ecuador, channel 5 broadcasted during some time... at a terrible schedule, Sundays at midnight or 1am. It is amazing the lack of good likes from Tv channels over here, this is the type of series everyone should see because it is not religious, but human. I did stayed awake to see it. Way before Hiv+ by the way.

Joan felt she was doing silly things for God... i mean.... gardening? is that what one has to do to change the world?? Get into chemistry class??? what about activism on Irak to stop the war??? wouldn't it be more "God's Style"?? .... No. God taught Joan we all have a place on this earth and on his plan... and we don't need to do impressive things to make a change, we only have to be ourselves... and follow our hearts and God's guide to fulfil our goal on earth. Still with it... Joan had some hard times... i mean... following God in doing what seems simple could be seen as something easy... but we all know that following God's suggestion and doing what is right... is never easy.

The TV series had incredible soundtrack, composed by some of the most reflective and beautiful songs ever written. All the info about the show is at CBS Site. One of the songs is the one that motivated this blog.

Apart from all that there were several good things in series, for example. The faces of God. During the whole series there was a rule that was clearly explained.... God has different faces. We all might expect God coming from sky dressed in white, surrounded with light and a huge army of angels. ..... but in the series, it was proposed that God comes to talk to us using normal faces... God could be a punk rocker, a mature woman, a black man playing chess, a black waitress, a mimo.... a handsome young boy. God is much more human than we are used to think.... and it is certainly next to us. Here a pic of some of God's faces during the show.

I really liked that part, because it is truth. Most of us think about God as too pure to talk to us, and not like a father who is worried about us and always checking on us.

There were several lessons Joan needed to learn, and they were not all easy. Some of them were.

Joan's brother had an accident (before she started to talk to God) and once she asked God to cure him... to make a miracle... but God answered: "if i make exceptions it would not be fair for everybody, rules are to be followed... everything a person do has a consequence, you can only give him love Joan.. but he has to learn to live with the consequences of his actions".

Once God suggested Joan to find a part time job where she could help others... and in a bus she met a woman who needed a babysitter. Joan met the little boy she would look after... and then realised he had a strange illness in terminal phase... and that this 7 years old kid would die soon. Joan argued with God and told him "your plan is not right, people suffer... it is not working". God replied that the plan was perfect, because it was about making people grow and become better individuals.... and relate to others.... and yes, sometimes that hurts, but one cannot avoid being hurt... because if you try to do so... you stop living.. In this path.. everyone has different goals and time to be placed on earth "some will leave sooner, Joan... but during their short lives, they might impact other individuals and change them".

Joan had a best friend, Judith. She was a rebel. Skipping classes, drinking a lot, perhaps even doing drugs. They were both quite different... but who said that for being a real friend one has to be equal to the other?. They went through a lot together, but one day.... Judith died.

I don't have it very clear how but as for what i saw she was in a party and someone gave her drugs and until she fallen down on the floor and lost conscience. Then she was at hospital and could not recover.... she passed away. It was a big hit for Joan.... cause Judith died in front of her. I know i can relate to that... because eventhough it is years (perhaps over 10) that i don't lose anyone in my family one day i will... and i remember how is to suffer for loosing someone nice in our lives. Here some pics of that moment.

I had made an animation file about this moment but well... it did not work (or i didn't do it well) so i think you better watch out these videos from youtube... they are really touching.

and here another video

Here two reviews about the series from other Ecuadorian bloggers (Spanish) Majo Blog, Luis Blog

Apart from the whole story there is something interesting i would like to point out. I think God talk to us everyday. Off course, it is not a person seating next to me and calling my attention to say "hi, I am God". I just think that God uses situations and others people lives and words to talk to us everyday, or to be with us in the difficult moments, to warn us before things happen, and to comfort us once we start a long and difficult path. Somehow, i guess his plan is still running all around us, in our lives... but sometimes we don't notice it nor hear or talk to him.

The day i was diagnosed Hiv+ something strange happened to me, i really never took it into account in that moment because well... i was totally out of place when i first got the news, but now looking back in time i remember.... When i got off from bus to go to the Lab where i first got my results of eliza test, there was an old woman in the street... she was something like 70 years old. She was in my way to the Lab and was walking slowly and looking at me.... and without looking at anywhere else. I though she would ask me for something but as i passed next to her she did not.... she just looked at me. Strange i though, but kept on walking, i was worried about other things.

It took me 20mins approx to get my world destroyed and my life devastated.... i got the test results, and left the laboratory with my heart and myself trembling of fear... panic.... terror.... and talking to God... asking him to give me strength... and helping me to keep on believing in him. As most of you know... this illness has literally put all my believes in test... and i have lost my faith sometimes.... i admit it, it has came back slowly afterwards, perhaps because for me to believe is not something i have to do, or i should do.... i do it because for me it is a truth i can't deny or avoid, just my personal opinion. The thing is... when i left the Lab i was lost... i walked with my mind in other place..... went a different path in direction to the malecon.... and suddenly i found same old woman in front of me, i was in the middle of the block and she was at the end of it, walking the corner to cross the street.... she looked at me, staring at me one more time.... just looking, not saying anything. Out of nothing i though "will she be God?", i though about it only once and then deleted the though cause i though i was getting crazy.... plus.... the shock i was living was just big enough to consume all my thoughts. I kept walking... she kept looking at me... with a face of understanding..... i though "i must have such a terrible face right now... that it is evident for others i am unwell".... got angry, she kept on looking... and i just passed next to her... ignoring her.... i didn't need a stranger looking at me with understanding face. I left her without looking back, lost in my own world or the lost of it.

Sometimes, now i think back and i think that was perhaps God. Off course, i don't mean it in the religious-what-a-miracle way people would take my words but i mean that perhaps that person was in that specific moment the way that God used to tell me he cared about me... and understood how bad it felt to be diagnosed Hiv+. Since that day i have commented here different ways i think God has talked to me before and after my diagnosis. Off course, like everything related to faith this is not something everybody has to agree, this is just my personal way of thinking, my personal faith.

I guess the meaning of Joan Osborne's song is that. What do we do if God talk to us? do we listen? do we reply and start a conversation? but much more important.... are we able to see God in everyone we meet (or at least in some) and in everything happening to us? Perhaps .... we haven't heard it but he is calling for a conversation. Why not? Food for though.

Labels: New life, same illness, Spiritual

Today i met Claudia (my psychologist) after about a month or so. It was good, it was short too but we came out with some important points. Prior to go there i was analysing my life and seeing that i was not feeling happy. I mean... look at me.... I am a newly diagnosed Hiv+ and my situation is great... i have a job, i have stable health, i have knowledge and ways to contact others around the world to learn more about the disease, i have the cultural level enough to understand the scientific facts and tricks of the illness, i have the support (somehow) from my family and my friends (did i say "somehow" already?..), i have access to free medical care. I am actually.... the one who should complain less... because there are others facing totally different and painful situations. Off course mine is not perfect as you all know, but still with it, i am way ok.

I wasn't feeling happy.... i was looking around and seeing everything was actually ok, i have no symptoms... i mean i could tell someone i have no hiv and people would believe it... i have nothing that points i am infected.... but i wasn't happy. Claudia made me understand that i had all the reasons mentioned above to be happy but i have this trend to desire more.... to think i would be happier if i would have this, or that, or if this thing was different... or that other one. When one looks at other´s yards... they always seem to be better - she said. It is time that you learn to realise you have everything you need to be happy... because by having too high expectations about things and life and yourself... you have developed a block against happiness and it is preventing you to feel it and see it. You know... there are so many people who would desire be like you and you don't understand it.

She is right, i have all reasons in the world to be happy. I learnt it today, and she told me i have to develop the costume to realise how lucky i really am more often... keeping myself in my present not in my desires of past or future things. Everything changes all the time, but what i own... is my present. That was such a good advisethat it made my day. I also talked to her saying that i wanted to help.... how? she asked. I don't know i said - I just know i want to do something, i want to help other newly diagnosed people... perhaps going with them to take their exams or i don't know talking to them... or doing something... eventhough... i have to admit that i fear that if i go with someone to receive the answer of the test... and the person comes out poz and he/she starts crying... i will cry ass well... i am not sure i can manage that yet. She agreed it was too soon for me to do that...I mean, i am all that you want... good friend, a smart guy, a good person..... but not strong enough yet to see someone be diagnosed Hiv+ and falling down in despair.... that would be like experiencing my own diagnosis once again.... and i can't do it... i just can't.... it was too hard....

She told me mmm well, you know we will running some sensibility sessions for care givers in some medical points. Perhaps you can come and talk to them about your experience as being Poz. MMM? That actually sounds good.... i mean a way to help others is doing what i am doing with you.... letting other people know how it feels to be poz. It is the only way people would realise the importance of preventing the illness as well as the importance of not discriminating poz people. Yeah we are ill... but we are not dangerous, i mean... we have enough troubles in our lives to suffer because of you, don't you think?. I said yes, i want to talk to others... i want to say few things i disagree about the way that people see us and deal with us... but much more important.. i want to let them see inside of this. Only understanding us... they will be able to help us (and i have my own stories with care givers at hospitals... like some of you had read already). I also asked her about letting me to attend one of these sensibility sessions, i have never been to one (well.. my SDL/LDS left me quite sensible but it was in 1998). So, she will confirm me and let me go there and see.... and if i click then i speak... that sounds good, no push, no pressure... just doing what it feels right to do, in the moment i'll feel ok to do it. I like that.

I know i will cry, i know it. I cried after writing to Valjia (who has not replied to me yet).... i cried because to tell others about this is like re calling the sad remembrances of this months once more, i don't know how to explain it... the pain is too much, it is really too much. I didn't want anyone else to know i still cry sometimes (it is embarrasing).... I know myself and i think i might cry during my first testimony, ... but crying or not... i need to help others with this... few people dare to speak about it... but "someone must stand up for what's right. 'Cause where there's a man who has no voice, there ours shall go singing" like the song says. So lets see... it seems this whole thing is going somewhere else.....

have a good day, tomorrow i have it long long long.. working from 10am and 10pm. I am poz, and i am sometimes tired... but i am not lazy

Labels: New life, same illness

It is going to be three days and Valja didn't reply my e-mail. I am getting worried about it.

Today i have appointment with Claudia, my psychologist, after a month of not seeing her, i guess it is time.

I am deciding to make some changes in my life now and getting out a bit of my comfort zone. I will force myself to do so.

End of the month and more troubles coming, debts, debts, debts... it seems i won't have my credit cards unblocked.

Sometimes i would not like to wake up and live my life. To be sleeping without any worry.. sounds quite ok

Labels: New life, same illness

How to tell your best friend in the world your life changed and you are infected with Hiv?.

Valja (Valentin Turtia) wrote to me today, he is the best friend i have ever had in my life and the person who made my time in Moscow easier, i don't mean i had a terrible time there, it was good but no easy, due to financial limitations (extreme limitations actually). Valja and i became real friends and very close, funny... how can a latin and a russian became so close friends if sometimes their way of thinking are different? By respecting each other and being true to themselves. Well...i posted about Valja long ago... today i just received this....

------

Hey, JuanCa, wrote you a letter to your email, but it returned undelivered.

Re-send to all your e-mails which i have!

Hugs,

Valja

-----Original Message-----
From: Valentin Turtia
Sent: Saturday, May 19, 2007 3:06 PM
To: 'juan carlos'
Subject: RE: my news {Scanned}

Hey, JuanCa!

Do I remember right and you had birthday yesterday? Yes, I do. Take my wishes to remain a real man as I remember you independent of whatever you do and how hard your life is. Let some core things which make JuanCa different from any other person in the world remain with you forever!

What is your life now, what new happened since your last letter in December?

--------

If he just knew all the things that happened to me since December.... We haven't written often lately, cause i knew he was busy with his new marriage (he even invited to me attend it... but you know... flying from Guayaquil to Prague is not so cheap and worst in my condition). I knew one day i would have to tell him and my other two good friends who are living in Moscow yet. I just never knew when.... and i certainly don't know how....but i have to tell Valja now, cause he is my friend and we have never lied to each other.

--------

Hey man, how you and Katja are doing?

i hope great, i am so glad to hear from you. Hey.... don't feel bad about the apartment, come on... you are newly married you cannot have everything at the same time, let the things come in the right time, just remember one has to focus more in the being than having :) am i right?

Well... since December last year, my life have changed a lot... enormously, many things have happened and not all of them were good.... but the main one and most terrible.... is that i was diagnosed Hiv+ by 07/03/07. I am sorry in giving you these news... and well... God knows i wish things would be different, but they are not. I have never lied to you and i won't do it now... i didn't write to you before... because you know i was in the middle of the hardest time in my life dealing with the news and the facts of this new diagnosis. I wanted you to be by my side but i knew distance would not help us, plus... you are just newly married.... i didn't want to ruin your happiness.

Still with all this, not all the things are bad.... i know you might be shocked and nervous but i want you to remain calmed. I have been a lucky guy, cause despite the infection i was diagnosed in the early stages of it, so i have actually no symptoms and no troubles right now (my troubles come from other sources not my health lol). It may be years until i ever need meds, and once starting them they will help me out to stay alive but i have to keep them forever. Nowadays, Hiv/Aids is not considered a death sentence but a chronic illness, same like diabetes ... but off course more serious.

Man.... there are lot ... really lot of things to tell you about this, and how i faced the hard times at the beginning.... and the people that have been around me helping me, fears i have right now, and troubles i face, the new life i live right now and how i see it...... but i understand this i just said.... is already a big bomb. so.... i prefer to give you time to process it and i want you to ask me as many questions as you want to... if you want to.

there is a song dear Valjia, that i heard yesterday night.... i never knew it would be useful right now... but i guess it clearly reflects a bit of how i feel about my condition and my new life right now. here are the lyrics but i want you to really focus on the first lines saying "If i could tell the world just one thing, it would be... we are ok". I am ok my dearest friend, and that's all i expect from life right now... and i am thankful. You have always been my best friend, and that haven't changed, i haven't changed either, i just have weaker health. Strong hugs.. have missed you too brother, Xyahka

Hands - Jewel

If I could tell the world just one thing
It would be that we're all OK
And not to worry 'cause worry is wasteful
And useless in times like these

I won't be made useless
I won't be idle with despair
I will gather myself around my faith
For light does the darkness most fear

My hands are small, I know
But they're not yours, they are my own
But they're not yours, they are my own
And I am never broken

Poverty stole your golden shoes
It didn't steal your laughter
And heartache came to visit me
But I knew it wasn't ever after

We'll fight, not out of spite
For someone must stand up for what's right
'Cause where there's a man who has no voice
There ours shall go singing

My hands are small I know
But they're not yours, they are my own
But they're not yours, they are my own
I am never broken

In the end only kindness matters
In the end only kindness matters

I will get down on my knees, and I will pray
I will get down on my knees, and I will pray
I will get down on my knees, and I will pray

My hands are small I know
But they're not yours, they are my own
But they're not yours, they are my own
And I am never broken

My hands are small I know
But they're not yours, they are my own
But they're not yours, they are my own
And I am never broken

We are never broken

We are God's eyes
God's hands
God's mind
We are God's eyes
God's hands
God's heart
We are God's eyes
God's hands
God's eyes
We are God's hands
We are God's hands

Labels: New life, same illness

Something funny happened today...

Someone signed as anonymous and put a comment to one of my threads "words from my past" saying: JUAN CARLOS YOU ARE A F>>> LOOSER AND GAY

And off course, that post was about Cecilia Sacoto and her bunch of friends , so i guess anonymous or not, i know who are behind . So funny that those guys have not learnt anything after so many years. They cannot hurt me now. I felt bother and a bit of anger but NO PAIN (so sorry for you guys ). Anger because as usual those guys are not able to say things in my face... they didn't do it before, and don't do it now... looks like some of the lowest species of the humankind does not evolve as all the rest, huh? And bother cause it is a waste of time that such a non worthy people takes seconds of my life to tell them how meaningless their words are, when i could be doing something more constructive. Come on guys... i have better things to do... and you better get a life .

Plus, none of you know if i am gay or not, that's my business nor yours... and if i was.... is it something bad? come on guys.... i am ashamed of your retarded way of thinking (never mention you were in AIESEC... what a shame). About being looser, that's not right, i am a winner, i win my place on this earth everyday i wake up by overcoming all the situations i have to face... not like you... do something worthy with your life... it is a gift that some really valuable people does not have today, so don't make the one above regret about keeping you here. Be good and find peace....bye bye.

The weekend was good, I had good time at work, we are waiting for launch of new models that are really nice. Started to take the meds that i got from social security, and i realised something i never took into account. All meds we take, even aspirins, have side effects. Off course, if meds are not strong the side effects are not strong as well, but that won't be case for me in the years to come. Right now i am taking a strong med once a week for dermatological purposes... slowly other meds might come... until the time where the real ARV party will begin... and i will learn how to dance with them .

I am making new friends at poz forums, very cool people... and i am also realising that despite my English level (being it above average) i still cannot communicate properly with some american people. Looks like my jokes does not sound as funny in English as they sound in Spanish... ohh... buuu buuu.... Well, while i was in AIESEC, i understood that humour sense is one of the most difficult things to handle while communicating with people from other countries. I had a long long long discussion about it with some people at poz forums, I learnt that i have to be more careful with my words, because what i say is not always what others understand.

Hey, if you have noticed some changes in the layout of this site in the recent days, it is because i am still changing it. (yep... perfectionist)... i had designed a nice layout for the site, that looked great in my computer, but when i opened the site at work, i found out the background picture was not well placed (that happens when you don't know much about web programming and you tests your pages with your 17" flat screen). So i have been changing it and resizing it all until finding a point where it will look appropriated in your computers. Sorry for the inconveniences this may cause.

So i will leave you with a nice video that includes some scenes taken in Moscow!!! (Lenin statue, Kremlin, the change of guards, so on) Ochen horosho!!!! Apredilona kruto!!! This is an old song from Pet Shop Boys (i hope i am not the only one who remember them...) and has been in my mind lately, i don't know why... well, i do know but i might write about later. So enjoy the video, lets go west!!!

Labels: New life, same illness

Hi, i will try to be brief (i know it is hard for me but i will try)..

Working weekend over here while everybody is on holidays, no problem i had no money to go anywhere so i better stayed working.

Downloaded lot of songs from internet and several videos... mmm i love that!! At work everything was calmed, tomorrow i will work from 10.30am until 9pm (gotta be ready psychologically).

Mom is here and we are going fine... no fights so far.

Today i met someone, i was chatting on internet with a guy, talking about different things.. when i saw his pic i knew i had seen him somewhere else. YES! at Positivesingles.com it is a website for hiv+ people as well as other living with different STD (sexually transmitted diseases) Herpes, HPV (Human papiloma virus) and more. I know it does not sound nice, but what i am trying to explain is that this is a place where people with same problems meet. Straight, gays, bisexuals, everybody. It is not easy to find a place where you can talk about hiv for instance with others and God knows it took me time to find one, or two. When i first saw this site, i joined and did a research to see if there were any other Ecuadorians. There were three. A guy from Quito, a guy from gye with picture and me. Not much help huh?

The guy i was chatting today is the guy who had a picture in that site. I recognised him, and i asked... "can i ask you something? are you hiv+?" he answered: Yes. And i told him: "me too!". Funny how friendships begin huh? We talked a lot, he is actually working in IT for large and important company here in Guayaquil, where they don't know his status. He is also going to social security hospital and meet my same Dr. In fact, he even was activist and part of the Ecuadorian Coalition of People living with Aids/Hiv. Although he told me he was disappointed about them, mmm...well... i guess i need to hear that story. The thing is we talked a lot and i asked him if he could go with me to the next meeting, cause i know none and i am a bit afraid. I also asked him "hey can we be friends?" he replied "do you really want to be my friend?".

Strange answer i though... then i understood that sometimes Hiv isolate people... and sometimes others around us help Hiv in that too. Enough to make us doubt when a new friend stand in front of us and give us a hand. Walter as it is his name, has seen some people dying for Hiv. He told me that his last two partners were Hiv+ and are death already. I felt sorry for him and a deep fear took my heart... i know this feeling, it moved to live with me two months ago... and it is the first thing i see when i wake up everyday...... the shadow of death standing next to my bed..... patient... waiting.... like telling me... sooner or later your time will arrive.....i already said i fear death... and i will repeat it... i am afraid to die .

Walter told me his partners died because they didn't look after their health, that was what ruined them. Ok i will not do the same. We agree to meet one of these days to chat. Today I have a new friend. This waiting period... or latency as it is clinically called... plays with my nerves, two days ago i had a nightmare... i was brushing my teeth in front of the mirror and suddenly after throwing water to my face... i saw it all covered of pimples with pus... all over my face.... then i though "Chlamydia"...(but i was so fucking wrong cause chlamydia does not show in the face... but in genitals... sorry too many new illness to learn and i get confused... ) then i opened my mouth and all inside it and my throat was covered of pimples with pus too.... Candidiasis. Then i woke up. Uff... what a nightmare... both Chlamydia and Candidiasis are some of the OI (Opportunistic Infections) common in Hiv+ people while turning to be diagnosed with AIDS (as a result of the advanced state of the Hiv infection).

Good to tell you that Chlamydia and Candidiasis are NOT ONLY present in people with Hiv+, in fact there are several ways to get them. Although they hit us harder cause our immune system is being suppressed by HIV virus. Also despite these are mostly genital illness...they can cover other parts of the body (throat, etc) in the case of people living with hiv and with low defences.

The biggest fight against Hiv... starts in our own mind. And God knows it is not an easy game .....

Labels: New life, same illness

Hi, free day today isn't it good?

I was thinking in going early to the hospital to request my prescriptions (vitamins and some dermatological pills) but i could not, i got over slept. Since yesterday i am feeling extremely tired. It is not just tired... i do mean EXTREMELY TIRED, like if a truck would have past over me. It is hard to define but believe me, once you feel it... you know it is not normal... it is HIV. Then i realised I had to claim some prescriptions from my last appointment with Dr (i did same day but social security hospital didn't have them that day).

As i am not under ARV meds yet, i am put under vitamins, lot of C vitamin and all the possible B's (b1, b2, b3 and so on). I never knew if they were really working on me, cause i was feeling alright. Now i think the vitamins might have been those that opened my appetite so i re gained weight and rosed my mood after my seroconversion, i got rid of vitamins last week (i had some of my first prescription). So, the goal is... i need vitamins.

I went to social security hospital and from 4 prescription i had to claim, they delivered to me only ONE, aren't they bullshit? It is been 20 days since my Dr appointment and they still don't have the meds i needed. Assholes!!!. I heard they said that by June 4th they might have them. I need vitamins soon anyways, luckily my sister gave a emulsion of Scott in flavour of orange. It is vitamins too, and it seems it does not taste so bad (according to what my niece said to me).

Spent the day playing football with my older niece and in the park with the youngest one. I love them!!! They were calling me and the youngest was saying to me "uncle park, go park!!" She is so cute, she is just 2 years old but is soooo smart.... i know all uncles say the same but believe me, i do believe these girls have good brains .

I watched star wars film (again) on Tv cable, what a great movie. Today was Rosa's birthday, a co worker. I called her and it wished her good day. In the early night something happened that almost ruined my night. A client called me screaming, accusing me of being a bad salesman, and complaining about a service i sold to them in December 2006 (fucking December huh?). They signed a contract for some service with a basic cost but i told them that if they over passed the limits of this basic usage of the service the bill would increase. Aha, the silly have a big bill right now. And off course i had to hear her, and all that, i even made a phone conference with my boss cause i know she had had such cases with some of her clients and even asked my boss to say something to the client.... and what she did?? NOTHING The bitch remained silent (sorry Shirley but you behaved like a bitch). So... as i am not in my days of letting others scream and accuse me .... i reacted. I had not fault, i explained everything to them and i don't need this girl calling me to my mobile 7pm screaming and complaining to me in my free day. The client said something like "Mr Calderon if you are a gentleman you should remain quite and ....." and I answered "I am a gentleman but i won't stand your accusations about this". I tried to make my point, and to explain her about HER mistake. She hanged up. And when i was about to hang up too when my boss said "is the client already gone?" (fucking coward bitch). She told me that i should not discuss with clients, perhaps she is right but come on... i had no fault, i didn't need to accept something i didn't do. Then i just realised my boss told the client before she calls me some stupid excuses that client used against me while complaining... "oh really, well we usually recommend our clients this other service more than the one you bought" so the client told me "you are a bad salesman, cause in your office they told me this other service is better". When i knew this i wanted to kick Shirley's ass.... but my mother told me to calm down, she is the boss after all. Also, i have to underline that i presented all possible options to clients, and if they choose the cheapest (as usual) i always warn them about the extra costs if they don't watch out their consume.

And it ruined the next following two hours of my life.... i was never good at failures. I was growth to do things right, without failures, mother was perfectionist so we both (sister and me) became perfectionist too. I think that is fine, cause it helps you to make things better and put your whole life in what you do, something that is not common nowadays, but the bitter part of it... is that when someone says "you failed". It puts you down.... and yes... even now.... i am not used to fail. And i don't like it...i guess that's why i didn't let myself "fail completely" with Hiv. I was taught to do things well, or repeat them if they were wrong. I guess it saved my life after all.

This incident was getting me angry and frustrated during the next two hours, until my mother said "hey.... what is in the past, is in the past" (looks like she uses my words sometimes huh?). And yes... that must be in the past, i know that tomorrow or next week this girl will go to the store and complain and scream and all that... but in that time i will see how to react, so far i don't think i will accept the guilty for some mistake that is no mine.

Ok, so as i know some of you are about to become Artem's fans, he sent me some other pics. Enjoy!

Labels: New life, same illness

Ok, today i wanted to say two things... today we had a long talk with my sister... a lot about my condition, my current status, and more. She told me she also had a friend of her living with Hiv, so she is talking with both of us to understand this more and see how she can help. Slowly our relationship is getting closer... we didn't really spoke much, cause well... we never really spent much time together years before, then she got married and well... The good part is that now we are trying to get together again . After our talk there was something she told me.. that left me thinking.. "do you think you are doing enough about hiv prevention and advocacy? don't you think you are treating it too superficially? just like talking about it but without showing or sharing scientific facts about it". Mmm... well... i think i am doing the most i can to bring the hiv topic on the table... and much more important on the heart of as many people as i can. Not much sure of what else i need to do in fact i think i am doing more than what normal people would do after diagnosed..... her words left me thinking..

Ok the other thing i will do tonight is to share with you a gift. It happens that when i was living in Moscow i made lot of friends, some of those i still keep in contact. One of my good friends is Artem Senikovsky, an amateur singer, model, song writer and actor who lives in Moscow. Oh yeah... i do know some people from "Da Business!". So this is something that will kill all the girls (and some guys too) LOL... here are some pics of Artem (and yes... you can click on them to make them bigger..LOL).

Aha, i can hear you all screaming and getting shocked by his smile and green eyes.

Don't worry, it is normal thing for him. LOL. I still remember when I introduced Artem to Monica Thakker, from India (One of my Russian MC team members) and she was.... astonished... and told me.. "man... did you see those eyes????????". Yeah, he is my friend and i agree that his eyes could kill someone one day LOL.

The thing is that Artem is writing and recording some songs now, some songs he had written by himself, and he just sent me one... that is AMAZING, so i decided i would do something good and share it with you. Artem is a very talented guy with a great voice and despite his usual work as a model he also appeared on a Russian soup opera last year. So... go download the song called "remember that i will remember you" (right click and then save target as) (mp3 / size 4.10MB) and discover the New Russian Idol!!! Artem, your song is awesome as usual... send you big hugs from Latin America while thank you for our everlasting friendship . poka!

Labels: New life, Personal, Poems

I got an email from about an article posted in a newspaper in Ukraine, from my very good friend Marina Malkina (Ex-MCP of AIESEC in Ukrain). This story is a bit not too short... but really worth reading. Marina, thank you for sharing this great article with me... it helped me a lot. . JuanCa

---------------

Battling the Lion: Vanquishing Fear and Choosing Life After Being Diagnosed with HIV/AIDS

By Vira Illiash

We stood by the front entrance of a Kiev hotel and talked about life and death. A ventilation unit roared somewhere nearby, blasting hot air right in our faces. Then suddenly it shut down and the icy February air quickly crept in through the crystal cold windowpanes stinging us with frigid drafts. We both started to shiver. Paying no attention, he continued to speak and I to listen. I would have been ashamed to suggest that we find another place to talk. It would have sounded pathetic because at that moment he was telling me about how to be strong.

"If you meet a lion face-to-face, you can run away and feel your terror grow by the second as you anticipate that he will overtake you and tear you to pieces with his teeth. Giving in to that fear, however, means death. But if you stand and fearlessly look him in the eye, the lion will not touch you. You may not ever free yourself from him and become entirely safe but, by killing the fear in yourself, you can hold death at bay," he said simply and with confidence. He was talking about how he lives with HIV/AIDS.

Carlos Cordero is a handsome Puerto Rican who came to the United States at the age of 17 and realized the American Dream by becoming a model for the international fashion powerhouses of Armani and Ralph Lauren, as well as the face of Pepsi. He is also one of the few lucky people to spin the wheel of fortune and become a real-life lottery winner. But Cordero gave up that glittering world of tinseled beauty and became a healer of hearts for outcasts who have no hope of salvation. He still travels the world and puts himself on display as he did during the years he spent on the runway posing for the cameras, but now the ethereal fantasy of beauty has faded. What is important to him now is dispelling the myth of death that surrounds AIDS. What is important is demonstrating the miracles created by antiretroviral therapy. What is important is inspiring people by speaking openly about his life and his experiences. And what is very, very important is not to be afraid of His Majesty AIDS, who is rivaled in power only by his constant companion-omnipresent and boundless fear.

Cordero's story is commonplace, yet unique. The path that led him to HIV is a familiar one to many people living with this virus, but the road he chose since being diagnosed is unusual because it is full of life and light.

HIV came into Cordero's life through a stormy, short love affair that left nothing more than the virus in its wake. He found out he was infected in October 1992, a few months after breaking up with his lover. "That was one of the most sobering moments of my life. I went out onto the street and didn't know where to go. My thoughts rushed around, trying to break through the fear and despair. The only thing I was thinking about at that moment was whom I would tell and whom I wouldn't tell, but suddenly I understood that hiding it was no way out. I decided to tell all my friends and acquaintances without exception and to stick with the ones who would really support me." As he said this, he looked me straight in the eye and I understood that he was speaking in the broadest sense. He was talking about genuine relationships of the sort many of us seek in life and about openness, which is one of the ways to find them.

Many people turned away, he admitted. Most of them, in fact. But the ones who remained were those whose support and caring for him knew no bounds and needed no justification. It was their love and succor that paved the way for his decision to close the door on fear and embark on the pathway to life.

"I decided to follow through no matter what the consequences. It was November, shortly before Thanksgiving. I decided to go and visit my family in Puerto Rico and tell them that I was sick. I hadn't seen them in 14 years. My friends tried to convince me not to go, but I don't regret it in the least." His words sank into my mind and I thought about how we often keep quiet about things that bother us only because we are afraid of the moment of truth. But how does a fleeting moment of discomfiture or even shock compare with the constant pain and embarrassment brought on by stigmatization and fear? He read my thoughts and added: "If my grandmother had had a stroke, it would not have been because I am sick, but because she has high blood pressure." That sounded harsh, but I realized he was right. Silence is an invisible shell of lies that cannot last forever. Sooner or later it will be penetrated by a cry of despair and reproach and it doesn't matter whose cry it is-the person who was keeping silent or the one that silence was supposed to be protecting. That is when things get really painful.

Cordero went on with his story, his words pulling my thoughts back to the present. "All the members of my large family from my grandmothers to my little nieces and nephews gathered for Thanksgiving. I told them that I wanted to know how they relate to me here and now not when I'm dying and see their faces distorted with pity. My being so direct and firm about this gave them confidence that I would not give up and that they should follow my example. I had always had fairly difficult relations with my family, but at that moment the invisible wall that had divided us all those years came crashing down and we all became much closer."

Four years later, Cordero was already very sick. At that time, there were no effective drugs to treat AIDS and death was the logical outcome of the disease. "In May of 1996, I was sitting in a wheelchair certain that I would not last past August. I had a whole array of diseases. I couldn't walk and I had to have food delivered to my apartment. Then suddenly I got a call from the Olympic Committee in Atlanta offering me a job. I had applied a year earlier, when I was still on my feet. I had always dreamed of working at an Olympics." Because of his language skills-he speaks English, French, German, and Danish in addition to his native Spanish-the job offer was for the position of translation manager for water sports. "They were talking to me on the phone and I was looking at myself in the mirror and thinking with horror that my lifelong dream would not come true. But then I asked when the Olympics would begin and they said in July. I thought: there's still time and I took the job without knowing why I did it." He smiled, remembering the moment and I was surprised he looked so happy. Hearing what happened next, though, I understood why he did.

"After I hung up, I felt a surge of energy like I hadn't experienced in a long time. I started doing physical exercise, revised my diet, and changed my attitude toward medicines, telling myself that they were vitamins that would help me get back on my feet. Before that, I had seen them as poison, which sooner or later would kill me. I forced myself to believe that even if my life was going to end in August I would be living out my dream in July." It was clear from his tone that, for him, the word "living" had only one meaning. At such moments you realize the weight that words can have, how they perform differently in the complex arena of language when they come from the lips of one person or the next, and how their value is tempered by each individual situation. For Cordero, "living" meant to drink life in big gulps, tasting it like a fine wine, distinguishing one subtle element of its flavor from the next, and-most importantly-not to be alone, but to maintain contact with people and to be inspired from within.

I glanced around to see what was going on behind me, instinctively searching for signs of life from other people who went about their business outside the of our conversation. In the foyer, a handful of people were sitting on sofas in frozen poses while a TV blared over the bar. Behind me, a guard stood gloomily inspecting his walkie-talkie. I turned back and saw Cordero's pensive face. He continued his story: "After the Olympics, I went back to bed as if the spark inside me had died out. Lying there, I thought about what it was that had gotten me out of bed the month before. And suddenly I understood that it had not been the medicines or the healthy eating, but rather my desire to see the next day. I needed to have a goal to work for. I had to see something in front of me, something that would make me want to get up in the morning. That was the day I realized that this was the prescription for bringing myself back to life."

As I listened, the thought suddenly occurred to me that there was a pure and simple truth in his words, some idea that had always existed in the back of my mind, but never found its way to the forefront where I could give it my full attention. While I was thinking about why this might be, he said: "During all my years in modeling I was the incarnation of many people's fantasies. They liked how I looked and how I dressed. They judged me from the outside, which showed very little of who I really was. But I always wanted people to like me for myself, for who I am on the inside as an individual. I always wanted to do something for people, for their souls, and their lives." He said this with such passion that for a moment I envied him his illness realizing that it was the dreaded virus that had given him back such a crystalline understanding of authentic values as well as the opportunity to turn his life around.

Gradually, by trial and error Cordero began to understand that he could no longer sit on his hands waiting to die. As his disease developed, it pushed and prodded him along a different path, a path toward life. "At that time, I was diagnosed with cytomegalovirus as a result of my immune deficiency. This caused a premature development of retinitis-a disease that blinds a person in a number of months. The treatment that was recommended was the installation of a special port in my heart to deliver a medicine directly into my circulatory system that would prevent the development of this disease. This was a permanent treatment and I told my doctor I wasn't ready for it. He couldn't believe his ears, but I signed a written release and walked out of his office."

As soon as Cordero got home, he called a travel agency and bought a ticket for Paris. "Before losing my sight I wanted to imprint something very beautiful in my memory. I spent one week in Paris and tried not to think about anything other than the delight of what I was seeing. When I got back to, I took a flight home to Puerto Rico because I wanted to say good-bye to the scenes of my childhood, the ocean, and the sky. I spent a whole month on the beach. I swam and dived trying to memorize the beauty of the sea bottom and to say farewell forever to the fish and the crabs. When I returned to, I went straight to my ophthalmologist who examined my pupils, raised his brows in surprise, and said with some puzzlement, 'Carlos, I don't understand anything here…. Where did it go?' At that moment I felt that I had beaten the lion for a second time just by refusing to be afraid or to run away. I simply told the lion, 'You'll just have to wait because I have more important things to do.'"

We both laughed and I suddenly realized that I wasn't cold any more.

---

Seeking Treatment to Live Means Learning to Live with the Treatment

Cordero was one of the patients who took part in the testing of triple combination antiretroviral therapy in 1996. Before then only one or two regimens had been in use-the so-called mono- and -double therapy regimens. The advantage of triple therapy is that all three of the drugs the patient takes act in a variety of ways, suppressing the virus. This allows the immune system to be restored. The patient has to take the drugs all at the same time in order to keep the viral load to a minimum. So far, this remains the only treatment science has come up with. The medications do not cure AIDS, but they can enable people infected with HIV to lead a normal life. "I had many doubts about whether or not to take these drugs, but I chose to live and without them it would have been impossible to prolong my life." I know that many people living with HIV are afraid to begin taking drugs because they dread the side effects. That frightened me, too, because I had seen people who were on mono-therapy and they didn't look right-blue fingernails, blue lips, and hair falling out. But that was back in 1992. Science has advanced since then, and I hope I look healthier than the patients I just mentioned," he smiled, somewhat quizzically. I nodded in response, letting him know that he looked great. And so he did, with a muscular, well-built body clothed in a tight-fitting wool sweater and elegant jeans. He had a healthy color to his slightly dark complexion and a very calm, confident look in his nut-brown eyes. The thought crossed my mind that only models look like that.

Suddenly he pulled his passport out of his pocket, opened it to the picture page, and offered it to me. It looked to be the passport of a rather portly, 50-something man. I looked up at him in perplexity, not knowing what to think. Cordero laughed and flicked his finger first on the picture and then against his forehead. "That's me," he said, and, waving the passport as he put it away, added, "That's me with lipodystrophy-one of the side effects of antiretroviral therapy that I experienced when I first started taking the medications. I also went through many other unpleasant adventures, including shingles, a condition where you're always on the brink of shock from pain." For a second, his head sank back, but then he straightened abruptly as if he had cast off some weight and went on, "But all those unpleasant experiences had a positive side. They meant that the drugs were working. AIDS caused me to come down with several forms of cancer, but the antiretroviral drugs saved me again. One of the medicines in the triple combination regimen I take acts especially on atypical cells, blocking their development. So it comes down to what prospects you can see beyond the difficulties."

Obviously my face betrayed a certain bewilderment that he had seen before, because he nodded with understanding and asked: "Do you have roller-coasters in Ukraine, what they call 'Russian hills'?" "You mean the amusement-park ride?" I replied. "We have them, but we call them 'American hills'."

"Everything depends on how you look at it, he said, and we laughed at his joke, but then he continued the thought. "So, there are two ways to ride them. The first is to grab the rail and try to hold on with all your might for the whole ride. The second approach is to raise your arms in the air and just feel all the twists and turns of the track. Doing it the first way, you can get a hernia. The other way, you just delight in experiencing those moments. But the ride is the same. It has all the same sharp turns and headfirst downward drops. Life with AIDS is the same. The disease is there, with its complications and unpleasant sensations, but a person's quality of life depends on him alone. If he takes ART, he can control it. He can live! And all of these trials just help you understand how to act in order to deal with them."

Suddenly I thought of a superhuman. Maybe the person in front of me was a modern Zarathustra, who had gone through serious testing, overcome human weaknesses, and achieved spiritual freedom. I don't know about that, but his attitude toward his disease was clearly something unrealistic for ordinary human beings. Not only because he had been able to survive all of this, but also because he knew exactly how and did it.

Cordero had explicitly decided to raise his arms in the air and do everything he could to "enjoy" a ride. For this purpose he has created his own philosophy of life with AIDS, which from the outside appears quite simple. He adheres very strictly to his drug regimen, does physical exercises every day, eats vitamin-rich food, and does what he likes. "When you're doing something that brings you pleasure, you get a bigger dose of positive energy-healing energy. I finally found something that gets me up in the morning, and that is my work." And, there is a story to that part of this unique man's life as well.

"When I was already seriously ill, I won a fairly large amount of money in the lottery. I wasn't in the mood to have a good time just then, but nevertheless I decided to fulfill my dream and see the world. To tell you the truth, I'm only now beginning to understand how limited my world was at that time," he shrugged. "Once when I was in Morocco, I suddenly felt as if I were doing something wrong. I felt as if all the good times and night life were laying waste to my soul when what I really wanted was to find something that brought me fulfillment. It was then that I decided to go alone into the desert that divides the southern part of the country from Mauritania and to think about what was tormenting me. I was completely alone in the midst of absolute poverty and destitution and suddenly I realized that I wanted to help these people."

The next stop on Cordero's tour was. Arriving there he went straight to the regional office of Doctors Without Borders, which runs various medical programs in more than 80 countries worldwide. By that time, he already had a fair amount of experience with HIV/AIDS-associated opportunistic infections and he knew the principles of how antiretroviral drugs work and their side effects as well as any doctor did. What's more, he had his precious philosophy of life in his pocket, so he offered his services. "They asked me what my field of medical specialization was. I replied that I was a patient who could discuss first-hand the nature and the symptoms of this disease and how to live with it. When they told me that they didn't have such a program, I asked them to create one."

From that fateful conversation in, a new journey began. Congo, Ethiopia, Uganda, Zambia -Cordero's world started to expand as he traveled through these sub-Saharan African countries that have been wracked by the epidemic. This part of Africa has just more than 10 percent of the world's population, but is home to more than 60 percent of all people living with HIV. Eleven million people there have died of AIDS, a many of them women and children.

Several years ago, many developing countries that were hardest hit by the HIV/AIDS epidemic and struggling against failing economies to provide treatment to their citizens received assistance from international donors for the purchase of antiretroviral drugs. The availability of these medicines brought with it the need for qualified specialists with experience in treating and caring for people living with HIV. Cordero became one of the few missionaries to offer his services to the medical professionals in those countries and bring light into the life of many families exhausted by the deaths of those near and dear to them, while at the same time coping with the fear of losing their own lives. "I go to places where AIDS is taking away more lives than all other diseases combined, to places where people had never known that it was possible to live with this virus and had never heard about treatment options. For them, AIDS means only one thing: death. I meet these people and tell them about the opportunities antiretroviral therapy offers, about how if you take it you can come back to life, go to work, give birth to healthy children, and plan for life in the future instead of your funeral. I teach them how to take the drugs properly and how to combat complications and they tell me their stories," he smiled, looking through me to some other place, evidently remembering each person who touched his life just as surely as he had touched theirs. His eyes began to moisten, filling with the sparkle of poignant tears and I felt grateful that the person standing in front of me was so extraordinarily authentic.

During that pause, I recalled the film he had shown me the day before our conversation. Cordero made the short movie in Congo where HIV is transmitted chiefly by sexual contact. It showed young girls with shaved heads, dressed like boys. According to him, this disguise was to protect them from being raped on the street. The gaunt faces of men stared into the camera and brightly dressed women shot timid smiles in his direction as he filmed them going about their day-to-day activities. Many of these women never experience sexual pleasure because they undergo female circumcision immediately after birth. As a result of this painful procedure and age-old cultural practice, sexual intercourse brings them more pain and much bleeding, which indicates successful completion of the sex act. Because of such practices, HIV is spreading in Uganda with unprecedented speed. The film showed the abject poverty of the slums where these people live before finally focusing on a modest health station constructed of bamboo. This is where the local inhabitants had gathered to listen to Cordero's story. Many of them were smiling and the men somewhat awkwardly embraced their women. I remembered Cordero commenting to me at that point that he asks them to do that more often because such displays of affection are not generally accepted in Congo. He also told me that people there rarely kiss.

Cordero has been working in these countries for three years now and he and his colleagues have achieved good results in patient adherence to ART, which is the most important factor in the therapy's efficacy. If a person takes the drugs improperly, his body can develop resistance to them and they become impotent against the virus. To prevent the development of a drug-resistant virus, the patient must take the medicines at the exact same time every day with very little deviation from the schedule. Adherence needs to be at least 95 percent but, to achieve this, the patient needs to know everything about his disease, the drugs, and himself. Cordero is convinced that those three basic principles should define the rules that govern the lives of people taking these drugs. "We were able to achieve 100 percent adherence to therapy in Ethiopia and 97 percent in other countries. But, unfortunately, nobody was interested in our results. So I decided that I myself should take part in various NGO projects so I could help people living with HIV change their quality of life for the better."

It was this desire that brought him to Kiev at the end of the fierce Ukrainian winter. By that time, revolutionary passions had cooled in Ukraine and time-like the Dnieper

Labels: New life, same illness

Well i know i usually blog at nights, but i just read this and i had to post it. Following graph shows the life expectancy and infection progression in someone who is Hiv+ according to Wiki pedia.I don't know the exact source, but i got this pic from the this threat at Poz Forums. And same the person asking about it said... i dislike the word death.(you can click on the pic to see it bigger)

I hate when i see this things published... i mean... do i really need someone forecasting my death time? do i really look like that?. I got disturbed, then i read the answers of this threat, here there are some:

As MtD points out, every living thing's "life chart" is going to end in death. That's a chart showing untreated HIV progression, right? So we have treatments, that will extend that. Even if there was a cure tomorrow, we're still all going to die sometime. Northern guy

Just curious, where did you get that graph and what year is that data based on? On a lighter note, how come my graph doesn't look like that? LOL I didn't get any of that nice "latency" period, my OI came way too early, and I've already missed my death (by that chart) by a couple of years. Leatherman

I wouldn't fret over the chart. It's just showing the average progression of the disease WITHOUT treatment. We all know some progress much faster, and some it takes much longer without meds. You can't sugarcoat the progression of the disease sans meds. It's a good reminder to keep on top of your health and take a serious look at starting meds when the time is right -- because the progression is what is if you don't get treatment.Strong guy

HIV is not what kills us. It's what follows in the footsteps of HIV that puts the damper on everything. With the meds we have now more than likely you will live out your life span. I won't say normal, but you'll get as OLD or Older than most of us. Rapid Rod

This is just the natural course of HIV - the aim is to take drugs before the viral spike at the end of the graph, and the crash in CD4s. I don't think it's news to anybody that uncontrolled HIV infection will kill you right? So lets control it - I personally think life expectancy is gradually reaching the levels of the general population. My favourite study on life expectancy said that an HIV+ person diagnosed at 25 looses about 11 years of life compared with his HIV- counterpart. On current drugs. Who would have thought that 10 years ago? Something is going to kill you. Personally I don't believe I'm going to die from HIV or the drugs used to treat it. But I maybe wrong.Matt Mee

Just so you know most universities including mine will not allow you to use sources from wikipedia due to there high rate of being unreliable. I'm pretty sure that chart is about right for someone not on treatment but for most of us with access to decent treatment its irrelevant. puertorico2006

Hmmm ... Wackypedia eh? I went 12 years without meds before HIV hijacked me, but everybody's different - a fact that chart doesn't seem to take into account. I will eventually die (who won't) but I won't be doing that on anybody's predicted schedule. I'm here today so I live today. After all, tomorrow I might wake up dead and then it'll be too late. You get my meaning I'm sure. Daniel

It's a statistical average. HIV disease progression has an enormous variance. I was obsessed and the more I read the more frustrated i became about the inability to accurately predict progression. Any statistics are pretty much useless on a case to case basis for predicting outcomes. My labs are great today. They tell me nothing about my labs 2 yrs from now with any kind of certainty. As to dieing. my mom had 5 miscarriages before i was born and was told not to get pregnant again 2 months into her pregnancy with me. Predictions of my mortality predate my birth. Screw Dieing. i am the pitbull, HIV is the bull. From addiction issues. depression, sexuality issues there hasn't been a bull I couldn't wrestle too the ground yet. If HIV kills me it won't be because i surrendered and stopped living and started dieing. I plan on living till the day i die...screw dieing...and yeah i say that with outrage at the prospect that some protein encased strands of RNA will ever run my life. I have HIV it doesn't have me....at least today planonstaying

And yes, i am not planning to die anytime soon!! JuanCa

Labels: New life, same illness

On Sunday, Diana Patricia and me went to Maac Cinema to watch some documentals, in fact we though it would be about "Alfaro Vive Carajo", an old terrorist group that stoped working in Ecuador when i was a child, but we had had the wrong information, and ended up seen two other documentals, one called "The big lie" and the other called "Do luto a luta". Which means from grief to struggle.

It is a movie done by Evaldo Mocarzel, a brazilian film maker who has a daughter with Down Syndrome. The whole movie shows the human impact for parents when they realise they are to growth a special child. The difficulties in finding highschools to accept those childs, eventhough it is known by now that any special child can adapt and study in any normal school. Down Syndrome children can adapt to any environment, they just do it a bit slower that the rest of kids.

It was a hit, and the movie really touched me, cause in some parts ... parents of kids with down syndrome feel a big lost... somehow similar to the lost hiv diagnosed people feel. I related to them...

It helped me to understand we are not alone, and that my problems are not the only troubles in the world... i might face a hard time right now... but i am not the only one. And it does not mean i should feel better because of it, but it means... I HAVE TO HELP OTHERS more than just worry about me. It was a great movie... amazing and it is amazing how some of these people, even after knowing they are diagnosed with this... still say "I can do everything, everything by myself... i just do it slower".

You can find a review about the film here

Sunday was nice and i had a fight at work on Monday, there are some useless people one should kick their asses from time to time and be straight forward to them... so i did. Now that i am ill i find no reason to keep my thoughts inside of me... off course i am still diplomatic (sometimes).. but if someone is pissing me off... i say it. isn't it how it should be?.

Labels: New life, same illness

Hi, as you all may have noticed, i did a big update on my blog, changing the whole layout. I wanted to make it more personal, so after spending over 8h (and i am not exaggerating) surfing different sites and trying to find a template that would fit with my idea .... i just decided to modify a template i was about choose, i decided to change the background picture and put mine :) (nothing more personal than that huh?). If you are reading this post it means i am done with the update... finally... it was sort of hard stuff, specially if you have to know something about xml programming (my programming skills go just until html) so i have been guessing how to make this place a place i like since now and on. I hope you like it

So, going back to the second part of the update... man.... and girl.... sit down. First, what i will tell you is a bit wild, so i hope you are above 18 years old and not easily disturbed... otherwise... don't read.

On Saturday i was alone at home and bored, the going out with Diana Patricia was moved for Sunday and i had the whole Saturday alone... and free. So i decided i wanted to see what Javico was doing, i assumed he would go to the support group we visited the other day. I asked him to invite me there too. Why? well... i know i didn't have such a good image from them but i had nothing better to do ... so.. there i went. I asked Javico what was the session of Saturday about and he told me "the right usage of condom". I really didn't think about anything wrong.. i mean it is good topic, in fact i am good condom user, so i didn't expect it to be interesting but anyways i had nothing to do. Aha, and i am not here because i didn't know how to use condom... i know how to use it properly, i just didn't. That's why i am here.

So i arrived a bit late, session didn't start and find a free chair, some new faces... none really interesting, it was cool to see Eduardo (the transsexual guy) again. First they started with the introductions, one of the members of the group was ill, she was in a hospital during two days this week, but she was sort of better now... i though "when will be my day of being in hospital bed? and how often will that happen....." I guess none knows... i have never been in a hospital bed for more than one hour.. and i hope that won't change. Then it came my turn, and i hate they always ask me to go and seat in front of everyone... i feel like if i were guilty of something and would be in a trial. Well,.. i made remix of my last days, the words of my mom, the results of my CD4, the meeting with Diana Patricia, the message from Cecilia, i talked about all. And they got shocked about my CD4 :( ... i mean for a normal aids/hiv living people the normal CD4 is around 300 to 350 (which is way low than 500, the minimum of a non infected person) and for some reason that i still don't discover.. it is very hard for them here (and internationally) to take those numbers higher. If you are around 400 you are so good in their point of view... but if you are almost 500 (like me) i think they were... amazed and felt envy. I don't say it in a wrong way, when i was diagnosed i also felt envy of any healthy looser i found on the street... didn't matter if the person was an ashole or not... when i got ill i saw everybody had something i didn't have... good health. So i understand why when i said my CD4 numbers the gossips and rumours were evident, i felt like i gave them bad news... which was not my intention.

They asked me about my Viral Load (another test that counts the amount of copies of Hiv virus in blood) but i told them i don't have it cause Social Security here does not cover it and it is very expensive (between 120 USD to 150 USD) and off course i cannot afford it. The leader of the group (a guy who was not there last time) started to talk to me about the need of the viral load and that i might be ill in fact.. despite my numbers...but i am sorry, i am totally ok. And as i knew i know more than they about Hiv... i used it. I made my whole explanation on why i don't need the viral load test so urgent and saying truth... i left them with the mouth wide open... imagine.. a two months diagnosed kicking the ass of the leader of the support group.... i guess i was not much popular in that moment. I think i seemed a bit snobbish... which i am conscious.. but i was not really up to let someone with less knowledge than me to tell me how to handle my virus.. my virus is mine and i know it well.

The last person introducing herself was a black woman, young girl, who was infected and not in meds yet. She had been diagnosed 5 months ago. And she looks fine, really fine... but she is having a hard time to handle her emotions, she is a mother of two sons and she is having troubles cause she lives with the family of her husband... and i don't know what happen to him cause she never mentioned it. We were trying to talk to her and give her motivation, but she feels just tired and weak... might go for pills against anxiety, which is not bad... but not the best way to live. Still with it, it is sort of normal for a good share of people living with Hiv, the fact of being infected hits them so hard.. that some of them spend years and years in the strange earth of sedatives. It makes their reality a bit softer and easier to handle... I guess once facing this we all have the right to decide how to handle it, i could have gone for sedatives, you know my state of mind... and you have read about everything passing through my mind... i could have also chosen suicide.... and believe me, i don't advice it to anyone.. but if someone who is poz decides to pursue that path... i won't blame him/her... i will try with all my streght to convince this person not to do it, but if at the end i cannot... then fine. We all have the right to handle pain and life the way we want to. I tried to advice that black woman to go looking for counselling... but she didn't pay me much attention, nor anyone else there... for some strange reason most of the activist do not believe in counselling. I still don't know why.

Then the big thing started, Tito was the speaker of the session, gay, a bit feminine, poz guy, around 30 to 35, is member of the coalition of people living with hiv/aids and according to what i heard... he is good in delivering this type of sessions. The first thing he said was: "Lets make this a session with a good level, nothing vulgar, so we will not use slang words for penis, anus and vagina... we will call them with their proper names, alright?". Alright - I though, it makes sense. he started his power point... showing a pic similar to ... this.... (an almost naked male stripper)

And he asked to everybody "when you see that picture, what do you think? what do you feel?". I though... "???????????". Off course i am not saint nor naive, but i just didn't get the idea of that pic. Until someone answered "Sex!!". And Tito, the speaker, replied "yes, sex cause we are all sexual beings and feel the desire of doing it despite our current condition, that's why it is important to learn how to play safe". That makes sense - I though, so i guess... the usage of explicit images was ...ok. Few i knew of what was coming next..... I have to say that to be sincere, it is the first session i receive about safe sex, all the others i have learnt by reading, and watching movies (eventough i am not sure one can learn to have safe sex there) so this was my real real real first safe sex "training" still with it, i though i knew it all.... then i remembered... "there should be a reason why i am seating here today....." and that reason was not my wisdom about this topic specifically.

Then, he started to ask about the difference between safe sex and protected sex, something i don't think he explained clearly, but it was something like safe sex is when you don't have sexual intercourse, and protected sex is when the intercourse happens with protection. I am not sure, but i think it is opposite way... He was then asking about if to kiss someone was risky, or if to suck "tits" was risky (tits = teta). And i put this face.. (i am taking pics of me right now to help you understand how i was reacting). I mean... i don't know... tits or teta in spanish is not so... "users friendly" so i was thinking i was hearing him bad. Then he started to talk about hiv transmission by women milks and so on... so that was scientific and proved until he started to say that transsexuals also produce a sort of milk from their "tits". Then i tough... "WHAT???!!!... what is this man talking about???". I looked at Eduardo and he was surprised.. but ended up astonished and with his mouth wide opened when the speaker said "and they even emanate pus from their tits!!". His body jumped from the chair.....in shock and he looked like.."i can't believe this". And i knew there was something wrong... come on.... don't be silly nor naive you all reading this... how can a transsexual produce milk???? and how can a transsexual emanate pus from his tits just like that... IT DOES NOT HAPPEN!!!. You only emanate pus when you are infected (a nail, or a finger or something... ) but you don't emanate pus out of nothing.. come on.... he was talking bullshit. So i asked: "how can a transsexual produce milk if they don't have the glands needed for that? and how can they produce pus out of nothing if it is a sign of body infection (and it is NOT related to hiv at all)?". A sort of long fight started he saying yes, i saying no... come on... don't be silly... such bullshit does not happen. Then Eduardo (the one who knew more than anyone else about this) said: "Ok, i am transsexual... i have breast because i used hormons, so i understand what you (Tito) are trying to say but it is not all right. I do emanate some liquid from my breast... but it is not milk and cannot be considered like that cause i could not feed a baby... plus, i have never ever had pus... so that does not happen." Eduardo had talked to a Dr about this before and Dr said that due to the hormons his body was functioning in a different way, but it was nothing bad, it was normal but it was not totally as Tito said. My face was like this.... ASTONISHED AND SHOCKED. .... Oh my God.

Then he was asking also about some games, preliminary games that couples usually have and if that is safe or not... and he asked if "having your vagina or your anus rubbed by someone is safe or not?" And someone answered "that's not even sex". And he... did.... it.... HE TOUCHED HIS VAGINA AND HIS ANUS IN FRONT OF EVERYBODY and asked again "you mean it if someone rubs my vagina and my anus it is not part of sex?? it is, as part of the preliminary sex previous intercourse". And my face was like this...

He was touching his vagina and anus in front of EVERYBODY!. I mean.. off course he is gay, he has no vagina.. but he was so graphic that i just could not believe it. Again i am not a saint, but come on... i just didn't expect so many visual aids in the session.

He kept on talking and we reached the point of oral sex... he was still making signs with his hands... you know what i mean... i couldn't believe it.... by this moment i was altered... my body was shaking... and i was having a mixture of shock, shame, fear....and big huge desire to laugh....i don't know... i mean it was not appropriated what he was doing but it seemed so funny to me that i had to help myself not to roll on the floor laughing and i was looking at everybody's faces to see if i was the only one in shock... and well... it seems i was.... or they are very good actors. Come on guys, if you go and face something like that... i am more than sure you would react same i did. We are just not used to. The oral sex thing was another fight... he said it was not safe to do or receive oral sex without condom,.... and i refused. I said he was wrong, because i read here and here that risk of Hiv transmission through oral sex is just theorical but have never ever been proved not found. So real risk is zero. Off course he disagree.. and it was taking and giving opinions, logical arguments, and so on... and all the rest of the public were looking at me like "???". I guess none dares to challenge a teacher while giving classes huh? I used to be like that.. but now i am not. Well... he was stubborn... so i am, and after fights and discussions and so on.. he finally asked me "well will you use condom for oral sex or not?" and i replied "NO.". And everybody was astonished looking at me like "OH GOD!! You are going to kill somebody!!!!". Silly people... it is well said that i cannot transmit hiv if someone does oral sex to me, if i would have any other sexual transmitted disease it would be risky but as it was recently tested.. i am clean. So i don't need to wear a condom.... plus it is not pleasant. I would rather not have oral sex then.

Well.. finishing that part of the fight, mmm sorry.. session, we all received condoms and he was explaining on how to use them and the importance of them, the materials and all that.. and then Tito said "Ok, lets practise". I though cool, he is going to bring a banana or something to practise... and he brought this...

That was a surprise... i mean i have seen those things before, but i just... never expected we ALL should practise with it.... so after explaining right way of put a condom he got everyone doing same this guy is doing in this pic

With the slight difference that Tito didn't place the dildo on a table.... but on his jeans. Aha, he meant to be funny... so he was calling people in pairs (man with man, girl with man, girl with girl) everybody mixed despite your real sexual orientation and made we all practise in front of everybody while the other person placed the dildo right between their legs. That was actually too much.... i exploded... started to laugh like crazy, shaking... moving and looking at everybody cause i didn't really believe this was happening... but they all were calmed... i was the only one... astonished. There was even some extra skills demonstration Javico had to do the "test" with another guy and Tito said this guy was an expert "putting the condon with his mouth...". OMG!! - I though. And off course, that guy offered to show to everybody how he did it to Javico. I actually got angry, Javico is my friend and i could see he was clearly... out of place. But got to manage it... and well... what could we do? it was part of the "training". Afterwards, as i was making noise, laughing, shaking and now even saying jokes loud!!! someone said to Tito... "lets call the newbie". ??? who me??? no no no no way!!!... Although i could not scape....and i had to do it to Tito (..... no comments... but there is a reason why i deleted my virtual pet called Tito from my website). I was trembling... but... i did it clean and fast... i am an advanced condoms user, i really can use them well, my problem is that sometimes i didn't use them. Something silly.. and not that funny... from all the people there, no girl could do the "test" right. Out of the fun, it means that none of them was ready to protect herself sexually. If they face a boyfriend who does not want to use condom... they are not ready to put it on him. Some of them said "but i never carry those, he is in charge....". And Tito replied... why do you deliver to others the responsibility for your well being? if it is you who has to know how to protect yourself". yeah well.. that also made sense. We ended up the session... i was sweat.... and i don't know i just could not stop laughing. While leaving i was talking to Javico and he told me "Hey you were shaking like a volcano near explosion... i was looking at you and you were moving and moving and looking at everybody like in shock... i was worried about you ;)"

Well... what can i say?... it was not the kind of training i expected... it was just... WAY too different. 2am here... and i still haven't told you what i did on sunday and today :) but that's going to be short.. the most crucial info have already been spread LOL!. See you tomorrow!!!

Labels: New life, same illness

Hi everybody, sorry for not coming during this weekend for updates, as some of you knew this past Friday i became 30 years old :) WooHooo!!!! Not bad huh?

i am very glad and excited about it, i mean one does not reach 30 years old everyday huh? i am very happy and optimistic about my future and comfortable with my life so far... there is still a long way in front of me and many different things to do, but well... i still have time to do it.

There are lot of things to tell you guys, but it is 1am and i have to work tomorrow at 8.30am so i cannot say all that's why i will only post half of the update, and the rest will come tomorrow... be ready for some ... shocking scenes, lol. But before that... lets compare... pic 1 me at 29 years old, pic 2 me at 30 years old. (i have the feeling that last one looks better LOL)

Well on Friday i spent time at work, everybody remembered about my birthday and they bought me a chocolate cake (big size) and almost everybody was there to sing and cheer up with me, i felt strange... cause.... truth is that i have almost never celebrated my birthday.... ???? ..... yes, it is true. i come from a non rich family so since i was a child my birthday was only good wishes and that's all, i remember when i was in high school i even forgot about when my birthday was... it was so meaningless... so i felt strange when they all celebrated it for me. I mean i don't regret about my childhood, it was fine, Mom had much things to care about being alone and with two children plus working and studying. She did a great job. It is just that now that they do celebrate it, it was just ... strange feeling for me.

I wasn't much comfortable with being the centre of attention, it was my first birthday celebrated in over 15 years.... so... i felt weird, but i tried to enjoy it, and with such a big chocolate cake... come on, that was easy :) ... pity it wasn't made of ice cream... I LOVE THOSE!!.

I had a good night and was happy... many people remembered about my birthday for some reason it was special.... specially because i so fucking bad remembering other's birthdays...... i always get confused between my sister's and mom's birthdays. Got phone call from Javico, from my sister Rosa (oldest sister from my father's first marriage). You might be guessing what happened with my father... he died 30 years ago. No problem, i didn't meet him. I hope he would have been proud of the man i am today... because i like myself. The small kid borned on may 18th 1977... evolved into a good human being (and very handsome LOL).

I spent the rest of the night on internet, downloading music videos (my new hobby). On Saturday i slept a lot damn... it is so fucking good to have a free weekend!!!! mmm as i have some time.. i should tell you about my shocking experience...mmm but it is 1.30am... no no no... sorry I'd rather tell you tomorrow i have few time to sleep and i would like to leave you with the good feeling i got from my birthday, be ready for tomorrow will be a wild... wild post... LOL.

Cheers, have a good night, Juan Ca

Labels: New life

Hi, i am actually feeling tired today.... so i will try to summarize this post....

first i talked to Diana Patricia today!!! She came back last week from Germany and we met today and were talking a lot, and eating shawarma and drinking coke we had so much fun today :) It feels great to be with someone who is not afraid of me, she hugged me and we had so much fun, just like always, like if nothing would have changed. I am so glad about it, that's what i call a real friend... the one who is always there and is not afraid of you.

Before that i had an strong discussion with my mother. yeah one more time... but this time was different... she exploded after all the pressure she has felt above her... (and because of not wanting to receive psychological help) she ended up saying me that she is totally disappointed about me and my life and the way it will end up. That she regrets to have invested so much time and money in supporting my AIESEC time and my University just to end the way i am ending now... and that if she would have known it would be like this before, she'd rather buy something to eat or to wear. Those were her almost exact words. So here i am... expecting not to be discriminated nor attacked by my own family... and i get it from the person i less expected. I argued... but then i just left.... i can't change how she feels right? plus at least she finally said the truth... i hate when others tell you they care about you and they don't.

I have came up with a decission... i won't let my mother know anything about my illness ANYMORE. She is not going with me to meet my Drs anymore, and if she dare to ask i won't answer her. If she is so disappointed i guess then i don't want to "ruin" her life more... so i will handle my life and my illness by myself, and she will not even know the day i die. It is my life and my problem, and i am not disappointed about myself.... i am the only one who knows all the things i have faced and why i am here at this time, she has NO right to judge me, cause this is my life not her. And if she does not like it she can always turn around and make like if nothing happens... i will help her.

My sister told me i should talk to her and fix everything.. but i am not up to talk to anyone.. what she said was serious and i am not going to forget it.... she should think twice before speaking her mind....ah and specially two days before my birthday... such a nice gift.

At work everything was fine... i will go out with Diana Patricia on weekend, i guess i will sort of celebrate my birthday with a big and nice hamburguer and perhaps a movie, that would be cool... away from all the troubles... a place where i can just be someone else.

About the pain in the "tool".. or better say in the "wheel of the tool" it is gone today... (strange isn't it?) perhaps it was something swollen in my urinary system (if that's proper name.... :( i suck when it refers to medical english... i know i know)... so i am not going to meet my Dr tomorrow, i was talking to a friend from the states and he advised me to stop masturbating (ouups!!!! LOL) (i hope everyone who read this is 18years or more... otherwise go away!!). Today i had some fever... small and some pain in my neck... my friend told me it is usual thing when Hiv people are stressed or under pressure... and that i should calm down and know i cannot stress... that pulls my CD4 down.... like if it would be so easy...... sometimes i wish the day of final judgement would arrive soon... i want to finish with this life.

Labels: New life, same illness

Today was a calmed day.. i went early to work cause i had to go to Alegro Pcs headquarters to deliver some folders docs from my clients and took the chance to check my email at work before leaving... and i found an email from Cecilia Sacoto.

For those of you who does not know her, she was LC Quito's member when i was MCVP of AIESEC in Ecuador and then became MCVP ER in the following term. My first though was... "what does Cecilia Sacoto do writing a comment on my blog??". Nothing bad, it is just that i don't see her since 2002, last time we met was in IC 2002 in Calgary (Canada) where she was member of the Ecuadorian delegation and i was member of the Russian one (Go Rubek!!!!). So well... it is... 5 years so i was amazed she would have found my blog and post a comment about a post named "The power of forgiveness" i wrote 11/06. I also though... the power of forgiveness??? what was it about??? I didn't remember... i read her comment... and i though..." huh???? what is she talking about??". I went back to read what i wrote, and i found the reason of her comment. Off course you have to read the post again to understand what i am talking about.

Well... in moments like this is when i feel nervous about posting my life online, i mean i have no fear of what i write cause it is true, in my point of view and i am not asking everybody to believe strictly what i write cause we all know true has different points of view. Still with it, this is my true, and that was how i felt that night.. and yes it hurt me a lot for several years, because it happened in a moment when all my life was AIESEC, i sacrificed myself during that year... and then i discover how people can say one thing in your face and another behind you. Perhaps none of them knew i knew what happened... but i knew, i got to know all same day. I guess i had good friends after all. I did not complain in the same moment, cause in that times there was this JuanCa who was naive... quiet.... and was dreaming AIESEC was a non political organisation where everybody was true. I was not really good in politics nor in diplomacy (now i am better). Anyways all this is in my past, i guess i have bigger troubles in my mind right now. My answer to you Cecilia is: "it's ok, what is in the past... should stay in the past"....

This is a song that came to my mind after reading Cecilia's comment

Hey talking about another thing, i was reading an interesting article on yahoo finances today, what about joining the 5 millions club. This is an article about the qualities of that lucky 1% of the American population, i think i should have 5 millions dollars.... why not? :) and what about you?

There are two other things i want you to know and help us out. First, there is this freak microbicide being sold worldwide and i just got an email about the potential danger it implies. Here is wrap up of an email i got today, please read it and help us if you can:

"I am writing to you today to request any knowledge you may have of a product called Genvia that is being promoted on the internet as a vaginal microbicide capable of preventing HIV transmission. Although several candidate microbicides are currently in development, none of them have yet been proven to be both safe and effective - and, in fact, there is no proven microbicide yet available. The Global Campaign is very concerned about any product that is being advertised to the public as a microbicide - as these are almost certainly fraudulent claims. Access to such products may, at the very least, give the user the false sense of protection and, thus, discourage condom use. At worst, such products could actually increase HIV infection risk by creating irritation when used. The attached article from a Chicago newspaper explains more about Genvia. Here is a picture to show you what the product looks like. We have received information that this product is being promoted in Liberia, Senegal, Togo, Benin, and possibly elsewhere as well. So I am writing to ask you if you have ever encountered this product or seen advertising for it. If you have, could you please let me know at your earliest convenience?
Any information you can provide would really assist our efforts to prevent false claims from being made and false hope being offered to people at risk of HIV infection. I'm sure we would all agree that such exploitation is unconscionable and must be stopped."

If you know something about this, please write to Anna Forbes, Global Campaign for Microbicides
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The other thing i would like to ask your help is about this: President Luiz Inacio Lula da Silva took steps weeks ago to make an inexpensive generic version of an AIDS drug made by Merck & Co. available in Brazil despite the U.S. drug company's patent. This initiative is the first one in America's region towards forcing the reduction of costs for Hiv meds. There is an article about this in Yahoo News, you can check it here. Right now several Hiv/Aids are showing the support to this initiative in order to motivate other countries facing troubles with their budgets to request lower prices from multinationals. If you can, please forward following mail to Clarisse

Support letter for obligatory license:

People signing below want to express their support and acknowledgement to the obligatory license issued for Efavirenz medicine by Brazil, which patents belongs to the multinational Merck Sharp & Dohme. This is an historical decision and pioneer in Latin America and it is a result of a big mobilisation effort against the abuses of multinationals supported by the actual system of intellectual rights. The obligatory license allows the production of cheaper generic versions, expanding the access of population and reducing the impact caused by companies' patent monopolies. We underline the legality of the used legal instrument, within national legislation, also in international commerce agreements.
Intellectual property does not impact only in public health, but also to the security, soberany, biodiversity and the maintaining of the culture of nations. The recent emissions of licenses to the key medicines patented in Brazil and Thailand confirm the idea that the actual model of protecting of knowledge established by the World Commerce Organisation, does not serve to our countries nor to our people. We are emphatic in saying that a system going deeper into the division between rich and poor countries and between producers and consumers of technological goods, is not a right nor a viable system. The union of our signatures shows we are united in the support to the initiative taken by Brazilian Government and in the criticism to the naturalisation of knowledge insertion in the role of medicines.

Signature

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Well... i know that for many of you these things does not matter, but for me it is important now... now legs go talk about something else...

I am having another problem now.... since last week i am starting to feel some pain.. in a very crucial part of my body located between my legs... aha.. in "the tool". Exactly in one of the "wheels" of the "tool" if you know what i mean. ok ok ok... i know this is not a nice subject (and not easy to talk about) but i am worried. It started last week... i first though i had hit myself... somewhere.. without noticing, but i really don't think so. I though it would be one of those things that come and go... but it is still here... and now i am worried. I talked to my mother and she told me it could be an inguinal hernia, or perhaps my appendix swollen or perhaps swollen lymph nodes (a very typical symptom in Hiv) eventhough i just read this last might not be possible. Yeah well whatever it is it does not feel right.. i mean it is not THAT painful but a bit... i have tried to touch and compare both "wheels" (same like girls do while trying to detect cancer in their breast... don't laugh it is just a comparison :)).. and they seem to be.. equal.. i mean i have never had troubles with them. :( i am worried (isn't my life just a big crap?). Mother advised me to talk to Dr and she told me to meet her on Thursday (i had appointment for July)... to say true.. i don't like to explain this "situation" to a woman... nor imagine that woman touching the "jewels" of my family :( buuu..... why my life is so crappy :((( damn... what worries me the most is that if it is an inguinal hernia i might need surgery.. and one of the "good news" of being poz is that you cannot face surgery just like that... most of the times they don't take you to surgery unless: it is totally necessary and you have a very high CD4. Being that Hiv reduce your defences the chances of getting any infection post surgery is very high.... :((((((((((( For God sake.. when will this end? i have never been so ill in my life... never had an hernia anywhere... :(((( Damn... i am very sad about this. I care a lot about some parts of my body: my teeth, my face and my tool :((( i mean i try to look after them cause i know suffering from something over them is not nice. And now this shit happens...

I hope Dr gives me good news next Thursday... hey you above... could you give me another hand???!!! :((((((

Labels: New life, same illness

Hi, today i had a great day, i worked from 10am until 10pm ALONE at the store, it was not supposed to be like that but Rosa, my co worker, said she was sick. At the end was fine, i ended up doing big sales today... over 10 mobiles including some voice plans (for those i would receive bigger payment), was really good. I was trying to do the work of 3 at the same time, but i was sooo happy. Aha, i am workaholic.

During morning and before going to work i did my first didactic activity, i planted. I planted a "Dulcamara". It is supposed to be quite good against cancer, hiv and many other diseases. In reference to Hiv, it is been said that Dulcamara acts like an immune modulator (helping to regulate the number of CD4 cells into our system). It is supposed to be originally Ecuadorian and proved internationally, which is great. Dulcamara is the main ingredient of BIRM, an oral solution that modulates defence system. As for me Birm is too expensive (20usd per bottle) so i prefer to eat the plant alone... and now i will plant several of them, today i did the first one (pic on the right). Yep it is still a long way to go... but i like that, i was always good with plants when i was a child and as i grew older i forgot about it, now i will be back to my "roots" :)

Tomorrow mom wants me to go with her to visit my Godmother... in fact... i was desiring to stay home relaxing on internet, chatting, reading surfing.... but well.... lets try to do it her way.... then i will go back to work around 3pm until 9pm. hope you all had a great day.

Tonight something great happen, i found on You Tube some videos of Zemfira. Zemfira or земфира is a very famous group in Russia, mostly singing alternative rock. The voice of the singer is absolutely nice and i when i came back from Moscow i brought lot of mp3s thanks to Stella Vasilieva one of my co workers at MC team, i still hear them quite often and just can't stop loving them!!. It is true that i don't understand most of what songs say....but come on, you don't have to understand music.... you have to feel it. Feel this....

Zemfira - Blues

Zemfira - Skazki (live concert in Kishinev 2002)

Labels: New life, same illness

Guess what, today was a better day.

Yesterday night i went to sleep around 2am, i was so tired i didn't even hear the alarm ringing to wake me up to change my mother's serum..... she had to scream to me to wake me up... i jumped from bed lost.. without knowing who i was!! Don't worry i was just slept, i did help my mother and went to sleep again. At morning my mother asked me "are you feeling sick? you look terrible!!!". No i am not feeling sick... i am just too tired...

Went downtown and my sister lended me 30 usd and gave me 10 usd for my mother's meds. Cool, thanks God i am not the only son...things would be worst. First time this week i could eat a sandwich wow... so tasty!!! it was pretty delicious... i am not eating fast food these days due to my diagnosis of hiv and the diet Dr prescribed me until i got my stomach strong again, plus when you have lack of money and diagnosed with a non curable disease... believe me, you prefer to eat full lunch than the usual sandwich and coke. By the way, diet is over... i took yogurt the day before yesterday and i am eating margarine again and i also drunk milk. No "side" effects so far, stomach is getting stronger again. So glad about it!!!. Went to work, it was a normal day... i am worried... i have been making research at work about hiv and immune system and so on... and i think guys i work with have sort of noticed. Today i felt several times they were sort of standing behind me to read what i was reading... i think i will stop with it. I can't risk work, eventhough it is illegal to be fired due to Hiv infection companies here are still doing so. There are few companies here like Colgate Palmolive, Cerveceria Nacional, Petroecuador, Comercial 3B that keeps their hiv+ employees working or move them to another department where they represent no risk to others or to themselves instead of firing them.

I don't understand, If i am hiv poz i can do actually anything without any risk. I can be salesman, accountant, brand manager, police, soldier, sailor, pilot, singer, journalist, waitress, priest, President of Ecuador... my hiv status really does not affect who i am after all, the only thing i would not do is to be cooker. I think it would be sort of disgusting...EVENTHOUGH EVEN AS A COOKER AN HIV PERSON HAS NO RISK OF INFECTING OTHERS. Remember Hiv needs to live inside our body and dies fast once it is exposed to the environment. Even if i cut myself while cooking, none could get infected... hiv will be dead way before that. So... there is no reason why to discriminate hiv poz people (one more time it is clear....) but the shit still happens.... Ahh by the way... did you know i am not allowed to travel to other countries because i am hiv poz????? There are restrictions for migrating to the USA and Australia, and i don't know how many other countries. Mother told me the other day "they are requesting a test before you travel.. and that one includes hiv... now all your travels will be stopped forever". I answered "i can still travel... not to all the countries... but there are some where i would not have problems". Well... i am actually not sure about this. I mean i know there are several countries not testing visitors... but well... i hope i won't be tied to remain here for the rest of my life... i love my country but there is a whole world out there.. and i want to see it. I am not thinking in migrating right now.. but i wish i could go for vacation to New York one day, i always wanted to see it. And go back to L.A. where i had a great time....

Mother went to see Dr today, she is way better now, she still have to drink lot of liquids but serums are gone!!! She is so happy, we all are so happy. She is that happy that even performed after appointment with Dr in "mother's day celebration" at Infectology Hospital!!! She is so good telling poems.. she has a poet soul. (That's where the artistic vein of the family comes from!!). My sister told me "everybody was so glad and happy after she finished her performance, they really liked her!!!". My mother is a star. She will stay with me tonight and tomorrow will be back to my sister's house. I will be working tomorrow since 10am to 10pm (oh yeah.. who said we hiv poz were not hard workers? you are wrong :). I am hoping to make good money this month (eventhough they are not paying us properly... none is receiving comissions for their sales)... but i hope that will somehow change.. sometime.. before i die lol.

I decided i will do two things these days... 1. learn more about the basics of my condition and how i can help my body to deal with it. 2. find another activity to distract my mind. So today i started with the first, i started to check and learn the basics of immune system, how it works, what are the t cells, cd8 cells, cd 4 cells, and all that, i found a good place to read about it here. I was also about to read how to eat properly, but that will come later cause too much info gets me confused.... my mind is not what it used to be before. As for the extra activity to distract my mind... i think i will plant something tomorrow, lets see if i do it cause i have been thinking in doing so but i haven't yet.

Ok, that's it for today.. have a good night you all :) ahh.. and happy mother's day!!!!!!!!!

Labels: New life, same illness

Well, today was a hard day... and bad, not terrible but bad one. I went to sleep 3.30am after switching serum of my mother. Yesterday night we argued a lot, well... we have too different tempers (or perhaps we are just too similar) plus when you are "tied" to bed it takes out the worst of you.

Anyways the serums were done almost without troubles, except from some air in the tube after the last change, but we could solve it. Then i figured out that my credit cards are not unblocked yet so i went to one bank to complain... but i could do nothing. By now i am already late with the cards i was up to date, so... eventhough i did reach an agreement with two banks, they will not unblock anything.

Today morning electricity was cut. I was very píssed off today... totally... i had no money... i had to ask my new boss to pay me 10usd in advance... i wanted to stay with those until mid month... but i had to buy more meds for my mother and bough some few stuff at supermarket.. and right now i have only 3 usd in my pocket. :(

Mother ended up with all the serums, went to the infectology hospital, took the tests again.. and she is still ill.... but somehow getting a bit better... she was prescribed 3 more serums (meaning i won't sleep fine tonight again). Right now i feel weak, and tired... soooo tired.... and bored of my life.... and disappointed....i am just sick of my life... i want to scape... Or perhaps not even complain.... i prefer to be careless... it somehow sounds better... i am just tired of seeing all is a mess around me, everything goes wrong... everything turns out bad.... Today i though i would prefer to die.... i went walking from the bank to my work and i saw a bridge.... and i though.."if i could jump from that bridge with my head down so all my weight would fall on it... i would die immedialty and without feeling anything... that would be actually great.... imagine... full peace... no more worries, no more pain.... no more troubles.... nothing... just... death... empty silent space.... no so much noise.... just everlasting peace... i love it, i love the idea of having everlasting peace around me..... but what if i don't "kill myself properly"? I might suffer a lot, even more than what i am doing now.... naah.... the risk is not worthy". I think we all have though about suicide at least once in life right? so it is kind of normal. Don't worry there are days when i would like to... but i think it is not going to happen today ;)

Went to work, my boss invited to me eat cause she knew i was having a hard time... thanks Shirley, so nice from you. Sold two mobiles today, not bad, i am really tired. I was actually wondering what is God trying to teach me.. then something happened. Shirley called me and said: Juanca come and see this.

I guess there is a lesson there... i know i know, it just does not touch me... does not impact me. i feel i am somehow insensible right now... i feel so tired and so sick of this that i just would like to forget it and throw the book of my life away. I definitely need vacations.... of my life.

Then Shirley was playing a song, from soundtrack of a movie, the story of the movie was very nice... I asked her about it, she told me it is from a movie she watched where a young girl had an accident and her body couldn't move anymore, her mother stayed with her all the time... every single day of highschool and university, helping her daughter to study, taking notes for her cause she could not move...the story moved me... just right now i understand my mother would do the same for me... and if she does that... God would do even more. Wow... i came to my senses... this is just a hard moment and should not define how i feel about my life... cause after all i have been blessed a lot.. with a mother that could do lot for me and a family that support me in their best capacities. The song i am talking about is performed by Theresa Andersson and its tittle is "It's gonna be ok" here a sample of the song Listen. Well it seems i am not going to Aiesec party, i am tired and i prefer to rest this week. It's 1.30am... and arguing with my mother again.... we love each other, i know that for sure... but sometimes it is very hard to communicate... totally. I should be more tolerant.... cause i can't expect she would change... "I have to be the change i want to see in others". Ok, i will try... but it is hard. I became too independent and doing things her way does not really please me... i prefer to do things mine. Ok ok... i will try to shut my mouth and don't argue anymore.

have a good night. Juan Carlos

Labels: New life, same illness

Well... today was a not so different day after all.. and no so good.

I went to the hospital in the morning to see dermatologist, i used to have small issues on dermatological level, but i decided to try to get rid of them since i know now i am weaker. I had to tell them i was seropositive, i think they were surprised (2 young girls and 2 young boys... saying they were drs). They got to manage it, one asked me "do you have your cd4?". I though... "wow.. he knows what he is talking about...". I think from all 4, only he knew what to say... well.. they examined me, and well.. they checked me and what i can say.. it was useless... they just told me "your dermatological problem is normal among people, and being you are hiv poz it becomes more evident, there is no cure but if you take this meds you might control it a bit". Cool, they prescribed me things that social security does not cover.... yeah it was useless.

Mother is not feeling well, has got fever and felt weak... after leaving hospital i went to meet her, she was meeting other Dr at other place. She was prescribed some exams and also won a gift cause they were celebrating mother's day. She took a buss downtown afterwards and i went to work, went to toilet of shopping center where i work... and i forgot the mobile my company gave me... shit.. it costs 100 usd, and they would discount me, but i was lucky i went back to the toilet and the person who entered after me had not left so i asked for the mobile and got it back. I was happy, i mean good things are starting to happen huh?

I was at work and the sister of an old classmate came to the store, i was talking to her (she didn't recognise me) and then... another ex classmate came in... he was surprised seeing me (it is like...10 years?) and he saw this girl who he also met since we were in high school, Isn't it the world small? we had a long talk, full of laugh, memories, jokes, good time, really good, we were talking about other classmates... and then my friend said something "This guy (referring to another classmate) he is now living in the USA and he is doing really good, i think he is one of the most successful"... successful... successful... successful.. there was an echo in my mind, that word touched me, i don't know why.... perhaps because during long time success was my goal in life. It was not living, i wasn't here to live.. i was here to be successful... and i had my share of it... long time ago.

Later in the afternoon, i got a phone call, my sister saying... "Mom is at Infectology Hospital and she is not feeling well, i am at work can you go there to be with her until i arrive?" I was at work too, but i talked to my boss and they let me go, i had to come back by 6pm cause i was in charge of the store until 9pm. I went there, mom was waiting for her exams, she had no money for the exams and by chance she met a dr who helped her to get a 100% discount in her exams. We waited, she got the tests.. and well... it is impossible to understand them but the numbers were very low.... i worried. My sister arrived and we were making a queue to see Dr, my mother, my sister and me... when suddenly someone said...

"Aha, the other day i came and all those hiv positive people were around here walking and they were caughing, i was so afraid that they would contagious us" Another person replied "yes, one of them seated next to my children and i asked him to go away, he was ill and i don't want them to contagious my daughter". The first woman said "yes, you know those people once they got ill... they are just half dead, and worst if they get tuberculosis... they should be isolated and not let them be around us, to be hiv poz is the worst... it is like the apocalypses!!".

I got angry, i mean... my mother was there listening to them... my sister too.. and they were sad and afraid... and scared.. come on! They are my family and i won't let this mother fuckers hurt them, get them ashamed and destroy all have built. i told my sister..."i want to speak!" Mom and sister told me.. "don't do it". But i didn't listen i have nothing to loose i could even go there and tell them... "hey you bitch!! i am poz so what's your problem?!". But i controlled myself a bit and joined the conversation like another curious... and when they were talking bullshit i just said.."that's not true". The woman looked at me, she was saying that once hiv poz get very ill.. they die without a way to prevent it.. and they die very thin....i told her "that's not true, i have heard about cases of people living with aids that taking meds can get back to be normal, i have a friend who was very ill and he is now normal and back to work". She answered "God has so much mercy,.... miracles happen sometimes" and i told her.."miracles or not, it happens, so when an hiv poz gets ill it does not mean they will die, they can live long and good lives". We spent like 15 more minutes talking and i took the chance to tell all that people that to be with a poz nearby is not dangerous (silly them... they had a poz right next to them and they didn't know..) also told them that hiv is not a dead sentence but a chronic illness nowadays. Some people were looking at me and somehow showing me they agreed... that made me think, perhaps they know someone... or they are poz,... or someone they love is.. but why people remain silent?? why if we know the truth we don't say it? why if we have the light, we don't use it to illuminate others around us???. I felt fine for what i did... but i have to admit i had to be strong cause while talking to them... i felt i wanted to cry.... perhaps it was somehow evident in my face.. i could feel my face muscles moving.. trembling....but i could not avoid it... it is this sudden sadness overwhelming me yet. Although i didn't cry... luckily the conversation stopped before i lost control of my nerves.

I had to come back to work and my sister called me around 8 pm. Mom has a Dengue... Dr told her that her exams are very low and that prescribed her meds and 3 serums, tomorrow by 4pm they will repeat exams, if her numbers are not higher she will have to stay in hospital cause there is a risk she develop hemorrhagic dengue. When my sister told me i felt down... i mean... how can i be just leaving a bad time... and immediately start another?? why??? come on... it is too much. As my sister works, my brother-in-law works and my nieces study.. my sister told i will have to take care of Mom while she is in bed and put attention to her serums and change them. I am right now 2am waiting for the first one to finish. I am not happy... i hate when this things happen.. i am trying to have a calmed life and something else happen. In the next two days we will have troubles..not only mothers illness but the payment of all other things that i could not solve (water, electricity and so on)... Mother asked me to gring for her some meds and yogurt.

While i was at supermarket buying the things mother asked me... i wondered.... what happened to my life? it is long gone the days when everything around me was full of happiness and success.....yeah success... or what i though it was. The days when i used to have money in all my 5 saving bank accounts and i had my current account with over 800 usd. When i applied for one visa credit card and they asked me too much papers so i applied in other bank and i got both cards approved without giving more docs. The time when i bought my laptop, my pocket pc, i got a mastercard because i was bored of having only visas.... and now is all gone... now i don't care about success i prefer to keep on living and to stay healthy. I want my mother healthy too. I would like to say i trust God and i believe everything will be ok... but after all i have faced...i just can say this: deep in my heart i have small feeling of confident... but i am mostly afraid of what i am living... and where and when it will end up... it is not only about the Hiv... it is about ALL that is going on in my life... it is like a nightmare. It looks like i am in the middle of a big lesson.. and i still don't understand it.

Labels: New life, same illness

Hi everybody, it is 8am today and i came back to Hospital because i have an appointment with dermathologist. About yesterday.... well.... there are lot things to say.

I woke up at 5am.... and went back to sleep :( then woke up at 5.30am....and went back to sleep :((.....then woke up at 6am and realised that... come on, i am not done for this super early waking ups!!! I dressed and went to the hospital.By the time i arrived (6.30am) there was already LOT of people waiting .... my turn was number 15 (i ended up meeting Dr at 1.30pm). When i just arrived to the Dr office there was a hand written announcement post on the door "There are no meds, let's go on strike". Oups.... i though "i hope God will help me they don't prescribe me ARV... cause they don't have them". It seems that it is not only one type or two types of ARV that are missing... but several of them. Damn!!! what irresponsability!!!!!

I did my usual ritual of not stopping at Dr's office but going forward, but then i though "i will have to meet them all one day anyways". So i went back and seated in front of Dr's office... and even i started to talk to some people asking them about how was the picking ticket and all that. When the nurse arrived there was a big mess.... everybody fighting to be the first... i though... " uh?? :( " yeah... welcome to Ecuador. After taking number 15 i called my mother so she would arrive later, it was no sense to have her waiting with me... The i decided i wanted to interact with some people. I met some people yesterday, some of them are members of Spring Aso and invited me to go there. It was something strange.... In the area where my Dr works there is also neurology and heart diseases offices so all patients seat somehow same waiting room, plus my Dr is not only having Hiv patients, but also all type of internal diseases.... so the way they recognise is by asking "are you meeting Dr Heredia?" If you answer yes, you are mostly hiv infected.... isn't it weird?

I met a guy who was heterosexual (cause there were several homosexuals too). He is a school teacher, and have been living with Hiv since 7 years ago, he is thin, but actually look pretty normal, if you look at him on street you would never think he is infected. We were talking and he told me a bit of his story. It was a shock for him to be diagnosed hiv poz... he had married a year before... He got deeply depressed and started drinking, plus he was very afraid that someone would know his status cause he knew if something like that happened he would be fired. He ended up divorcing from his wife cause he was afraid of infecting her.... i told him "but there are ways of having children without infecting your wife!!" he looked at me like stranged...and i said "well perhaps 7 years ago these possibilites were not there anyways". Sometimes one should not say all that we know, i didn't want him to feel bad.

Yesterday i was afraid, among all patients there i saw something i didn't expect: Lipodistrophy. As i mentioned before it is a side effect of some people after taking meds. Yesterday from 28 patientes waiting to meet my Dr i saw 3 of them having it. At first i didn't realise it was lipodistrophy. They were just thin... and even some of them were not thin but muscular body with thin faces.... you could see the bones of their cheeks, then i said... there is something wrong... how can a muscular person can have a face where bones are evident? Lipodistrophy. I feared. There were lot of people trying to talk to me yesterday, some of them were also trying to get too close. That was something that bothered me, i mean do i look easy? do i look i am willing to let someone else to pick me up at my HIV Dr office? come on...i am here thinking in something else. So i am sorry to say this but i behaved stupidly with some people. I just didn't want them to bother me. Then while i was seating there was this mature man (40+) seating next to me and talking to me... at first i didn't think in talking to him but then i did it cause i though he might give me info about how things go there for real. We talked and he told me he is married... and while talking to him i realised he is of those with lipodistrophy in his face... in a certain moment it was hard for me to look at him i was just thinking "this could happen to me....". SHIT!

I don't really know how it works but there is something wrong in this, i mean i see this mature man with 10years living with Aids, who has lipodistrophy in his face... and i see Orlando who has been 16 years living with Aids and who looks perfectly normal... so.... what is wrong??? and how can i prevent it??? i don't know..... :( a friend yesterday night told me that doing cardiovascular exercises it helps preventing lipodistrophy, ok i will look a bit more on it. Meanwhile you can read this article to get to know more about this: Spanish / English.

Well, i waited a lot... and then my time arrived, time to meet my Dr. First i got my weight measured... 79kg, i think i am stable on this now, after going up and down all the time during last 2 months, i finally got a stable weight. Yes i still want to get thinner, but we will see. My mother was with me during the meeting and Dr started to check my exams. BDRM (exam to test all sexual transmitted diseases STD) was negative, i was soooooooooo happy. in fact to summarize... my tests were all normal, blood, cholesterol, triglycerids ok, Hepatitis A negative, Hepatitis B positive (oups!! it was because i took the vaccine against it in 2004, so no worries) and she made some confussion about Hepatitis C, she (Dr) said first it was not done.... then said it was done but they requested another blood sample.... and she also had ordered an Hiv confirmation test (Webster Blot) and they said they also required another blood sample... what does it means?. The she said... "don't worry you already have two tests confirming your status: Elisa and IFI... so you are infected". I though.... well.. whatever, but now that i think about it.... i will talk to my mother to see if she thinks i might need to have this test again... it is a confirmation test and i had already had one, but if they ask me for another sample it might mean several things... the blood was dry when they tested, or the might even broke the blood bottle, or they found non consistent results.... or they found nothing.... no Hiv. This last option is not much probable to happen, since i have been confirmed Hiv poz twice, and it can be that taking another test might be just wasting money... big money cause this test is also not cheap.

Then... the important thing came... she talked to me about my CD4, well...you have to know that these numbers are relative and they are just approximated and non conclusive... so... don't get too stresed - She said. I would just add... guys.... you know life is long like eternity and might disappear in a second... today we are here and 5 mins later we might not. I understand i can't stick myself to be living.... if Gods wants me to go...... i can't avoid it....... :( ........ my CD4 result is....

494 !!!!!!!!!!!!!!!!

I know some of you might say "????? are you gonna die or what???" well let me inform you i am not going to die by now :) off course a car can still hit me but i will try that it won't happen anytime soon :) The normal CD4 number in someone who is not Hiv+ is between 500 to 1,600. So i am not that bad.... the higher the number the stronger my inmune system is... so i know by now this is just starting. I might have had my CD4 very high before infection because i almost never got sick lets say perhaps 1,000 so now i have half of it but for someone infected i am still in very good conditions. Dr told me that in average virus eliminates among 50 to 80 points of CD4 per year, so that means i could spend at least two more years without meds. isn't it great?!!! Off course this is cannot be confirmed, it will all depend on my self care. She also told me that my numbers might grow a bit if i eat properly and protect myself form illness... if i get ill... that will reduce my CD4 and might boost Hiv development inside me.

But well, i am very happy :))))) i am a healthy ill person :) LOL . She prescribed me some vaccines against Hepatitis, flu and other stuff. And stopped with the antibiotics i was taking and told me that she will only prescribe me vitamins. So to say things as they are... i am left alone. No meds protecting me against anything in order not to develop resistance to any type of meds (cause i will need no resistance to them when i will be sick). How long i stay without meds (ARV) will only depend on me. The vitamins are just to provide me some energy and resources to keep on living normally and to strenght my defenses a bit while Hiv goes forward.... and if everything goes ok... in several years... the real fight will start. I have time now to protect myself, to prepare myself for this.... to eat all i want!!! (eventhough she told me to try to avoid fats and so on), i will learn more about this illness and its side effects and hopefully when the time to really fight for my life starts... i will be ready. Love for you all, i feel so great right now!!!!

Labels: New life, same illness

Short update here... yesterday i signed the arrangement with the bank internacional, and paid the 100 usd. Where did i get them?.... i had big troubles to collect the whole money, plus i paid all the money i had.... and i was missing some more. So i asked my boss for an advanced payment of 50usd. I used part of it to complete the 100 usd and now i have 30 usd until 15/may. I am just wondering how i will pay cuota facil, visa guayaquil bank and electricity bill... it makes about 220 usd. I will figure out something.. hope so. God.. i need another hand!!

The girl at bank was very nice with me, i think i did the right thing explaining her my situation and trying to educate her.

Today i disclosed my status with my sister. Wasn't easy thing.... but finally it did happen... i was really needing to do so... she is my sister and the connection between us (mom, sister and me) is very strong. She took it fine, we met Claudia (my psychologist), we talked and my sister does not know much about the illness but she told me she will be by my side always. That meant a lot, after the meeting we spent like 3 hours talking... and walking.. she also told me she has some personal problems.... as strong as mines.... life is never easy for anybody.

I understood i need to be stronger to support her and mom, and i need to get out of this financial troubles because if i think these days are hard... those about to come seem to be really harder.

Looks my mother is getting depressed... she has something... she is loosing weight and being worried.... my sister and i will be there for her and try to help her.

Well.... life is still going.. i guess one just have to play the game. A friend sent me a link of an Ukranian vide of "Verka Serduchka". The vide is kind of odd, but the music is nice :) enjoy it. Time to log off.

Labels: New life, same illness

Today we celebrated "workers day" here in Ecuador and it is suppoused to be holiday but not if you work in a shopping center :(

It was actually very boring, not much clients so we had time enough to go buying some food and making sandwichs to drink with coke in our own personal worker days party :)

I also had the time to sleep at work (hehehe) and even play some online games, Rosa my co worker got to read a whole magazine she just bought. long day without much to do... that's what i call a boring day. Tomorrow will be a key day... so cross your fingers. Nite all!

Labels: New life, same illness

Well... i told you all i had something planned about the banks thing and i had few time to make it work. And today it happened. I had two options... 1st not to tell these people my status and stick to the law that protects my anonymity 2nd to talk about it to them... and pray they will help me and not spread the news through the whole financial system in the country.

Well that was a complex thing, if i wanted to do the second i needed a copy of my exams and those were saved in Social security hospital and they would not let me reach them... until my new appointment (may 8th). I also need them cause people from the foundation where i go told me they can find me some cheap help in a small Christian medical facility where they support my normal meds (no ARV) if i prove i am poz. The thing is that around midday.. 1pm i was talking to my mother about it and she told me "then you should go there and try to ask them to let you take a copy of those docs, talk to the person in charge and ask for the favour". And i knew it was the time (i just felt the urgency to move and do it... i knew it was sign from above)... in fact i didn't know what i was doing home... i had to get those docs today if i wanted to sign on Wednesday morning. So moved my poz ass to the hospital, went to look for someone to ask for help, i was directed to the file keeping department.... the actually don't allow anyone to take off folders without Dr allowance but i had to tell to that man "listen i am patient of Dr Heredia, i am seropositive... the thing i that i need to take a copy of some docs in my folder cause i am asking for a reduce in some medicines i need and i need to prove my status". And the man accepted... i was surprised. He went to look for my folder.. but he could not find it. That put me down. The i remembered i asked Dr to keep it there in her office ( i actually didn't expect she would really do so... but looks like she did).

I went there and Dr didn't work today, but i found the nurses... first one didn't know anything about folders... i had to wait the other one until she finished explaining the codes for ARV treatment to another man (big strong man by the way... looked like a marine... didn't know they were also in social security). After 20min of waiting she finished i talked to her about what i needed and she said "it is already 2.15pm it is too late... why don't you come tomorrow?" I though "TOO LATE? come on... tomorrow will be too late plus it is holiday!!! i need those docs now!!!" I tried to insist and insist and prayed to God inside my heart "Come on God, help me out!! i need your help". She finally moved her ass and said well.. if it is just within first folders... then i might help you if not you will have to come tomorrow. I was praying and crossing fingers and she went throught one, two, three, four, five... and more folders... and mine didn't appear... when i was almost disappointed.."Juan Carlos Ca...." YES!! thats mine!! thats mine!!!. I flew to take the copies and came back.

I had been recently notified i had a training at 2.30pm and i had to pick up some equipment near the house of a shitty co worker who didn't want to help me. I arrived late to the training, when i just got there.. they said "well it is over". Damn.... my new boss told me to stay until next training in half an hour. Then i knew... i had time. Bank Internacional is 3 blocks far from the headquarters of Alegro PCS so i flew there to talk to this woman, the idea... talk to her, show her the exams... and expect for a miracle cause i couldn't leave the copies there.... it was too much risk.

I talked to her, she lied in the back of the chair... and had that same smile... in her face... she tried to hide it, but her eyes were brilliant... she was ready to fight knowing she would win. I decided to put all my cards on the table... "Look you told me you needed to know what is my condition in order to ask for an extended period of payment, well... i have a copy of my exams, i prefer you to look at them instead of me telling you what it is....". She took the papers and her face changed... it hit her. I could see it. She was surprised, touched, hurt, sad, it was all in her face... but the most important.. she was considerate. She started to talk to me, and how this happened, how i was feeling, i also tried to educate her... well... i guess that was the goal of this situation, i told her i was told i could stay long time without meds and that perhaps in some years i might need them. I told her i could not leave the copies with her because there is a law protecting my identity and if they call to the social security they would not say anything, nor the instituto de higiene. She asked me if i had gotten any other opinion, perhaps taking another exam... i told her "that's the second exam actually". She asked me about my mother, how she felt cause this woman is also a mother too. I told her my mother tries all the time to look strong, but that i knew she perhaps cried when i was not present cause i knew it was a hard thing to deal with. Her eyes filled with tears.... I don't know how... she became human again. And i realised... it is a pity we are grown and are taught to become insensible.... she was ready to fight, but not ready to see what some people suffer in their own lives.... luckily she was still sensible enough to empathise with me. We talked, i tried to educate her, told her about statistics and how things happens, about the medicines, we talked lot... and it is just hard to summarise it all.... i just can tell you i was speaking so fast... i was so anxious and so nervous... and i was just a bit out of me.... my mouth was just moving i just knew i wanted her to understand my situation and at the same time i wanted to educate her... i was in some way saving her life and perhaps with the info i was giving to her... she would save someone else...

That's how this works, if any of us remain silent... sooner or later we will be criminal, criminal because of not saving the lives we can save everyday... criminals because of not doing what we were allowed and called to do....And i am not only talking about me or the hiv poz people... i am also talking about YOU!!. If you have read this blog, you have lot of info to share to the rest of the world... and sooner or later you'll be a criminal too if you don't share it. Help to save others!!

In my case i was not sure if this was the right path for me... not because i was doing something wrong, but because i expected it to be painful... to save strangers is not my strongest point.... but somehow i followed my heart and it followed God's direction and it worked out as it should be. She told me she would help me to arrive to a 10 months extension of payment and that i could go there to pay 100usd on Wednesday morning and to sign the agreements. She wished me all the luck and told me "listen, i know your situation and i want you to know i am not going to talk about this. i will talk to my boss and tell him that you were just sick and had troubles in health and that i agree it is reasonable for you to get this extension, so if it is in my hand i will help you out and you don't have to stress about it". She also told me "i agree with you that some people like me might be sensible about what you are facing but some others will just say... he is got hiv? make him pay us!, but don't worry" - she said - "I think i can manage this and i will work on your extension of time". I thanked her and left. She was nervous when i gave her my hand, but she corresponded.

Wow.... for God sake!!! Miracles do happen!!!!! I thanked God, called Mom and she was very happy. I went to the training and arrived on time, then went to the store, worked until 9pm and well... i got paid today.... 91usd. I have to pay 100 usd, plus i have no more money for food, nor transportation, not for electricity bill, no water at home, stopped with some of the meds i was taking cause i can't buy them.... and that made me feel a bit stressed again... but i refused that feeling... i saw a miracle happening today... some more has to come yet. Hey you above!! Tons of thank yous... that was a good good move.... thanks for make miracle happens in the life of this silly piece of dust that moves and tries to keep on going... thanks for remaining loyal even if i failed. Thanks for being there when i need you even when i don't identify you sometimes... thank you.

Labels: New life, same illness

Oh yeah!! yahooo!!! yuupiieee!!! huuurraaa!!! wow!!!!

To be on the beach was all that and much more!!! What a fun!!! what a freedom!!! Man... i didn't enjoy to go to the beach (nor being with my family) so much since long long long time ago. We went to General Villamil Playas, a beach about 1h30 far from my city. Ecuador has lot of nice beaches but to be sincere, the one i like the most is Manta, that is 5 h far. I almost don't go to General Villamil nor to Salinas... i just don't like them much, i think they are always crowded. Yesterday General Villamil was not, man i loved it!!!. We left early morning (10.30am lol). Mom, Sister, Brother-in-law, my two little nieces and me, that was nice.

I spent the whole day swimming and playing with my older niece Andrea (10 years old) we played so much, we laughed so much, we drunk so much salt water too!!! lol. I also played with Ivanna, my youngest niece (2 years old), both of my nieces are very sportive girls, they like swimming, running, it was lot of fun :)) i love those girls.

Mom was worried about me, but when she saw me having so much fun she relaxed, and she also took the chance to enjoy the beach and get wet.

Once we arrived i was a bit worried, because as i have lost weight i though... "it might be quite evident", once i got in swim suite i asked mom if i was looking thinner (i still think my legs are getting thinner some times) but she said i was just looking normal. Now i see the pics i think... oh my God... i am not that fat guy!!!. Ok ok ok... now you will agree with me i have to lose weight :)

In the way back i stayed overnight at my sister's place, that's why i couldn't blog yesterday night, excuse me please. I am ok, i am happy, i was worrying that sun might affect me (i actually don't know how it could.. but as i heard hiv poz are much more vulnerable to different type of cancer... i though skin cancer would be a risk... i know i am still very silly!!).

I had a great time yesterday, i would even call it.. "My day without HIV!!!". There were just some things i have to point, i had to take my meds at the beach and my sister asked me why i was taking meds, since i have always been very healthy... it is strange i take meds now. I told her they were for preventing flu (which is actually right). I understood she is not aware of my status, i was thinking in talking to her yesterday but Mom told me it might not be the right moment.

I had a great time yesterday, but got insomnia at night.... weird since i was very tired... but i started to think about what to do with my bills, how to make the arrangement with the bank, my credit cards blocked, the coming payment for those blocked credit cards, electricity bill, lack of water at home, .... hey... enough to keep you awake huh?. I prayed to God and some how i got slept, i woke up today morning .... and my body has some pain... ouch! muscles... it looks like i am becoming a bit old hehehehe, but hey!! come on!!! 29 years!!! i am just starting to live!!!!

I had a great time and i definitely should spend more time with family and go to the beach often!!!!. I have figured some few options on how to get the arrangement i need with Bank Internacional, but i am not sure if they will be safe for me... what i know is this.. i have to get this agreement in the following three days (but one of those 3 is a holiday so in fact i will have less time). Cross your fingers so i can do things right and everything turn out to be good. God... you'll have to help me!!! I'll trust you.

Labels: New life, same illness

Well.... my first support group meeting was... "different".

Went with Javico there and well... everything was fine, i was calmed until i saw a group of people right in front of the door of the building where the meeting would be. I automatically said.."Oh my God!". Javico asked me... do you know any of them?. Actually no, there was just one guy i had seen him somewhere some time, but i have never talked to him so i really didn't know anyone there.... but the group was so..... diverse.

When one first about a hiv support group, i have two ideas in mind... 1. a group of smart people with good knowledge about the illness and with lot of scientific questions about how to fight the illness, how to prevent the rest of the world and so on. 2. a group of some kind of monsters... very thin, looking tired, ugly dressed and giving an image of "what i terrible life i have".. the kind of people you look from distance and you say "they might have hiv". Sorry if i am closed minded and well... it was my first time meeting others with hiv in a support group, i didn't know what to expect.

Well... this group does not fall (totally) in any of those two categories. Let me explain... the group is composed for about 14 people. 5 girls and 9 guys. The girls were about 25 years old or less and only one looked over 30, they all actually looked pretty normal, you wouldn't guess they are infected. The guys... my God... 9 guys, 5 straight, 4 gays. Gays were having fun behaving in a feminine way, and in fact one of them was transsexual (he had breasts and the other gays were touching them and playing with them... making jokes... that was very disgusting!!). One of those straight guys looked like a drunk man... but he was not drunk at all, another one looked like a worker, other looked more like a mature business man..... and javico and me.

I was very ashamed when i first met them... i felt very shy... and Javico introduced me to several of them... i was thinking to myself "why do you introduce me??!!! don't tell them my name!!!!". Too late, there were all mixed race, two black girls, a white green eyes, all other normal latin... and me... a red haired guy. It was long ago since i felt myself observed so much and since i heard "wow... red haired!! so nice!!!" I felt like a strange animal. Javico introduced me to the coordinator in charge (the usual one couldn't come today) and the first thing that person said was "is he pvvs?" (a person living with hiv/aids) and Javico said "yes". The coordinator replied.. "good!". I looked at him like.. "what???". He said... "i mean, good because of the rules not because you are living with hiv, sorry". Too late.. bad image already recorded in my mind.

Well the entry of this group is like becoming an FBI Agent, there are few rules but important: You have to be hiv poz, relatives or friends or people interested in the topic are not allowed. The only way to get in is by being invited by someone who is already a member and this person has to ask for allowance from cordinators first. meetings are usually on saturday but place might change.. so in fact none really knows until mid week when they call you. I felt like a hidden spy!! Agent Hiv 007!!

I was expecting a sort of AIESEC meeting, you know.. agents of change... and no, i am not sure they can make any change...perhaps that's just the image i got :-(. We went to the office of the foundation and it is just a big room with few computers and not well organised, well.. it is a foundation, i know they work with few resources. They had invited a Dr, an Infectologist. They were trying to setup the laptop and the infocus... and man... they didn't even know how to plug the laptop nor the infocus correctly!! didn't know how to arrange image options of the infocus... man... they knew almost nothing. I got disappointed and desperate... so i standed up and gave them a hand. Sincerely my mind was thinking..."if these guys are the leaders of the Hiv movement (in this foundation at least) we are not going anywhere.....". Training was supposed to be about safe sex.

Dr arrived, this Dr is one of those in charge of hiv patients at Instituto de Higiene, when he started to speak... i though... "My God... where did they find him??" The man spoke pure slang.... sounded like a vulgar person. For those latins who can understand me he was speaking like "ya pueshhh varonshh, ponte pilashh que vamoshh a empeshar!!!". Terrible image for a Dr... and again i though... "if that is the man in charge of taking care of us... i don't want to be in his hands". I know it is all about paradigms but come on... he is a Dr, an infectologist i was expecting him to have a different cultural level and a different behaviour, but well.. i understand what i expect is not exactly what should happen and it is not exactly right. In fact the Dr has made a post graduated course about Hiv in Cuba (don't know if Cuba can teach us much about Hiv... i though it was USA that was leading this...). Well... the training started without infocus cause Dr brought all in a dvd cd and the laptop didn't process dvd, so we talked almost about everything except safe sex, but we did talk a lot about hiv which was good.

There were several discussions, about Dr ways of thinking, he for example didn't advise women to have children, but i told him i had read on internet in american websites that hiv women can have children without problems if they take meds. Well, during the whole conference i asked a lot and refused some of the things this Dr said... i always used the reference of american info i have got over internet. In a moment he told me "i think you come from USA right? well about what you are saying..." i wanted to laugh.... so bad.... others were looking at me like "what? he is not from USA!" Image is all. There were few people asking question others were mostly listening and without speaking much, those who made most of the questions were the transsexual guy (Eduardo) and me. In a moment i though... "wow... this transsexual guy really knows what he is talking about..." I was astonished and admired. Eduardo, the transsexual guy, is very very very very very very very smart, and has lot of info about hiv and treatments and he is really good in applying his knowledge to practical cases. Wow...i admired him. Leaders come packed in many different ways. Plus, i was told Eduardo, the transsexual, is the member who invites most of the newbies of that group. And i felt i wanted to be close to him, there was... a leader. Dressed like a man, with a feminine face, with breast... but with a heart and a mind bigger than Everest. I once heard there are angels among us... and now i can tell you some of them dress like man but look like woman. I really admire Eduardo, i felt he was one of the few people in that group i could relate and talk more deeply about the illness and how to fight it. Imagine... i have never made any different among transsexuals and me, eventhough i was not that fond of having transsexual friends, i had a bad image... and well, they were not the type of friends i used to have... but now i really want to be friend of this guy, he worth his weight in gold!! Specially because when others hide their status... he discloses to talk and help others, man... that means so much... so much!!!! God.. thanks for sending us some people like Eduardo, able to worry about others and not only about himself.

The meeting finished, and i was talking to Javico, well... the meeting was fine but i was really expecting a different kind of group...I perhaps expected some people with AIESEC profile, you know.. well educated, proactive, potential leaders... and i saw only one over there. Javico told me he also attends meetings of other support group of the programme where he receives medicines and he told me this..."actually the group you have met i would say... they are in higher cultural level than others i have met". Oh Shit... i though... now i understand why this illness is spreading so fast... people is not ready to fight it... :((( Damn.. we have to do something!!!

I am really considering joining the coalition of Ecuadorian people living with aids, eventhough Max told me that most of the people there are "very basic" (those were his exact words). Now i don't know if to feel bad for being one of the few well educated people infected i have met so far, or if to feel lucking cause by being more educated i have more resources where to find help. :(((

Well, came home and sister invited me to go to the beach tomorrow, i was thinking in not going.... i wanted to stay home.. then i though.. what the hell do i do at home?? lets go to the beach!!!!!!!!!!!!!!!!!!!!!

Labels: New life, same illness

I feel romantic tonight, eventhough i have none in my life.... the only person i feel i am interested in right now... is someone i met some time ago and that has been close to me for some time. Still with it, things are not like one wished (they actually never are... aren't they?). This is a person i admire and have always desired... you know.. a big turn on... plus is a person that amazes me when we speak, a person who has given me a little space where we can share some of our learnings about life... where sometimes there are things only we both can understand. Although is a person who does not love me, nor envision any future together with me and that has been told several times before.

Nowadays, i look at this person and i find myself thinking "i won't fall in love with you, i won't fall in love with you". And i remember the things that has been said before about not having a future together so i can keep my feet on the ground. Tonight i feel romantic, and who said i needed someone by my side to enjoy the real meaning of love?? That's just a lie.

Today was a great day, it was actually pretty normal but a day before a free weekend is always a great day!. I had some worries about my financial situation, as all my credit cards are blocked i worried they will also block my bank accounts where i have all the money i have right now (15 USD) i got to withdraw the most i could (13 USD). I talked to my past boss and asked her to pay me in check since i don't want to have my salary frozen too. She told me it is not possible that they block my accounts, mmm but on monday before paying me she will call the bank and ask them about it.

I signed the agreement with one of the banks, so for next 3 years i will pay 19 usd monthly. Yep that was a good deal, i just now need to solve the fucking shit with the other bank, i am not sure yet what i will do. The afternoon was really fine, at night i met Diana Patricia on messenger, it was cool, we chatted, joked, laughed, and she asked me to help her with the translation of some docs, that was actually great... it made me feel normal, and she treated me like if i were the person i have always been. I loved that, yes!!!... this is me!!. Diana, thanks for being a real friend... awesome girl, huge heart, and a friend as real as life. Girl... thanks for being truth with me, thanks for seeing in me what is blind to others.... thanks for letting me still be myself without any difference, that meant a world to me.

I came home and mother had left me some food. Electricity bill came.... but!!! i won't think about it. My stomach is becoming a bit weak again... and i won't think about it. Then i turned on the TV, and a sweet feeling called love filled my heart. They were playing:

The Wedding of my Best Friend

Oh yep, now i am becoming a "youtuber". Cool, here in Ecuador vids take time to load but i hope in other countries you can make it faster so you can enjoy of a great scene in a great movie. I just loved it. I didn't cry today... at all... and i was lucky enough to have some romantic time alone at night, who said i needed somebody next to me to be happy? tonight i felt complete, i am alive, i am calmed, and i have love... to me and to the world, the bad days are gone for now... I have some time to be happy again. Did you feel love today too?

Labels: New life, same illness

Today i decided not to put a title to the post, because that itself is a title. Empty = nothing, cause today nothing happened.

Spent morning at my sister's place with Mom, it was nice to see her, she was worried about me. I ate good, mmm i love to have mom near. Something nice is that in my way to my sister's place... every car i took was playing gospel songs way to Duran and same thing way back to Guayaquil, that was a nice detail from above.

Well, today was very calmed and i thank God about it, i decided not to stress for the fact i have no money to pay anything right now. I have 15 usd until end of the month... once new month arrives... i will see, i get nothing worrying about this, cause i can't fix it. I talked to God today.... i still feel very weak and found myself almost crying many times today.

MTV MADE:

Funny, i cried watching MTV Show: MADE | Themi is MADE into a Skateboarder (Chapter 29), isn't it silly? That shows you how emotionally weak i am. Eventhough the story was nice, a girl fighting to be Made into a skateboarder... fought against her very conservative parents, and against all the people that didn't like her idea, she even fought against herself when she though "i am not ready for this, i just can't make it". Well.... it touched me. What else i can say. Now everytime i see someone fighting for what they want and they believe.... it makes me cry..... so weird, huh? i am just too emotional that's all. Themi is a great girl!

Work is going ok, not much movement these days. Flu is almost gone, glad about it. Due to the current situation i stopped taking Probiotics yesterday. So far diarrhoea is not back so i hope i got over it. I am still with Imodium and the rest of medicines. Today Javico told me he met Myriam my friend!!! that's nice!! i guess Hiv circle is small huh? Javico attended a meeting where several Ngo's working with Hiv prevention and Hiv living people met with some people from Ecuadorian Coalition of People Living with Hiv/Aids. You know... i am actually interested in the topic, the other day i was talking to Myriam and she gave me the address of the email list they use. Javico told me they are very well organised and that they have several projects running. mmm that sounds good i am interested in joining them.

Also Javico is going to have a support group meeting this Saturday, as i am free i asked him to invite me... First time attending a support group for people living with Hiv, i know what you all think... yep i need it. I think the same... Eventhough i do work almost all weekends so it is going to be hard for me to stick to that group... i just want to go there to see how it works and perhaps to get some advice.

Well, that's all i want to try to sleep early today... good night to you all.

Labels: New life, same illness

Today was one of those totally terrible days in my life... that are becoming somehow usual since Dec 06. Before telling you the whole story of today, i want to say something good, my new blog was published at aidsmeds.com newsletter, here what they wrote...

"<http://blogs.poz.com/juan/> Welcome our newest (and 1st Spanish speaking) blogger!

We are proud to announce the launch of our first Spanish language blog in The HIV Blogs <http://blogs.poz.com> , where people living with HIV post anything they want about their lives - their opinions, hopes, fears, frustrations, or simple recountings of their day to day.

Meet Juan Carlos <http://blogs.poz.com/juan/> (a.k.a. "xyahka" in our Community Forums). He lives in Ecuador, and was recently diagnosed as HIV positive. Juan Carlos has touched our hearts the short time we've known him, and we hope you'll enjoy his blog.

Check out his first post, titled "Volver a empezar <http://blogs.poz.com/juan/archives/2007/04/volver_a_empeza.html> ." You can leave comments directly after his post by clicking the "comments" link."

Well they were just too nice with me in the introduction, something i am very thankful.

so today started early, once again i woke up before my alarm, actually strange... i used to sleep lot, thats why i needed an alarm. Anyways i arrived to the meeting at work early, was the second one there. Meeting started late (as usual here) and the main point was.... our current administrator and owner of the store is leaving to work for another company. We all almost died.... she is a very nice woman, a good boss, she is a really good person so we felt sorry. Also we were worried about what our future would be.... are we fired? nope, we are not. She will appoint someone else as administrator of the store but in the mean time she chosen someone to took her place until new administrator arrives. I wondered if it would be me... since i am the oldest person working in the store, but no... it was not me. It hurt a bit, but then i remembered, i had been in such position before (Dec06) and that was the beginning of a terrible chain of situations haven't finished yet. She chose Shirley Quimi. Shirley is an external sales executive, she is actually very smart, good mother, good friend and in my point of view very reliable person. I am very picky in trusting people, but i know i can trust her, she is true, something i don't see easily in others nowadays. In fact... if one day Shirley gets to know i am Hiv poz, i am almost sure she will not fire me, and she will be quite understandable since herself faced and faces a non curable disease "Cancer at Thyroid". She is ok now but still on meds.... just like i will be. Well after the surprise my boss also told us someone else would help Shirley with kardex, codification of items, make sure everything about invoicing goes ok, and stuff like that... Me... and no, i am not happy. First because since I accepted to take a challenge for this Company in December 06 and it was a disaster for me (worked over 12h, 7 days a week, and even with it... i was not payed appropriately), since that moment i am quite sceptic about anything happening here. Plus, she didn't mention anything about a salary rise. Meeting finished, i left downtown to arrange the problems with my credit cards, in the way to the first bank i found this....

There were lot of people outside our Palace of Justice (Courts)complaining for several cases of bad medical practise (oh yeah... what i just needed). There were several stories that sometimes i heard on tv and they seem to be not solved yet. My God... even stories about the hospital where i go to treat myself now... International Amnesty was present there also.

Then i understood two things... 1st everybody suffers in the world, not only hiv poz people... and that's bad, by other hand.. we all find our sorrow as the hardest in the world. 2nd in our "Palace of Justice" where all courts are placed... there is something not just... or perhaps there is nothing just at all.... poor of my Ecuador.

I kept on walking and found first bank: Centro Mundo, went there talked and signed the docs, i got to make the agreement for 3 years.... yep three years and i will have to pay something like 30 usd monthly, do you think is few?? not when you receive 90 usd every two weeks. Well it is done, in few days they will call me back to sign some docs and that will be done. Then i went to the other bank: International, to talk with the girl in charge of collecting debts from users. First.. miss Pozo was talking over the phone for about half an hour... i waited... then i met her. Surprise... a prepotent woman... pretty but stupid and prepotent... what a luck!.

I started to feel she was one of those people who enjoy having power over others, enjoy others begging for help... and almost crying.. and i was not up for that. I was there to negotiate. We were talking and all that... and well... i will lose my credit card there too... there is no way to save it. Fine, what about payments? i will have to pay something like 150 usd first and then they give me 3 months (YES ONLY THREE MONTHS) to pay all the rest... it means something like 70 or 75 usd monthly. I talked to her and told her i was told something a bit different and well... i have to admit, i disliked her attitude so i also took the attitude "watch out bitch! i am not your toy!!". Well talked and watched several options but she was enjoying it... she knew she would win... i could see it in her face.. some smile. The she told me something i didn't expect, if i don't sign an agreement with the bank under their conditions, i will be notified to the government department supervising banks and all my credit cards will be blocked even if i am up to date with them (yes i am new in this and didn't know). Lot of fun... yeah.. :( Fuck, i tried to explain her i could not pay that much.... she was not really caring i took off my payment receive from work and i showed it to her... so she could know i was not lying... my strength was going down... she said there is nothing we could do. She had asked me why i missed my payments i told her i was sick (it is not true, i missed them cause i had just not money enough to pay all the cards). I didn't tell her what i had... before leaving i asked her if i could talk to someone else about my case to explain why i needed a bit more of time to pay, cause the if i take the longest period they offer me (6 months) i will have to pay something like 57 usd monthly plus all my other things... it won't work. She answered that the only thing i could do is to bring a letter together with my medical registry explaining what's my illness and that a committee will check it. I was about to tell her my illness is under a law that allows me the right for silence and discretion... but she would have not understood. I thanked and left.

I was thinking if i could go there and tell them i have hiv, they might react two ways... 1st: poor guy, lets help him. 2nd: wow!! watch out!! he is going to die without paying us!!!! Sounds stupid but it is realistic. I went for a walk downtown trying to relax, talked to my mother and told her the news.... she told me to relax. I met a friend, well.. not a friend, just someone i knew and we talked, he invited me for a coffee and was telling me about his life and his recent break up with his partner and all that... and bla bla bla... and i realised... i have changed. I don't care what happens to him.... it just does not matter to me anymore. Before i would have been attentive and caring and would have said something to motivates him and encourage him... but not today... i just didn't give a fuck for what he was telling me.... i just listened cause we were with a coffee and i could not scape... but i felt so bored and i felt what he was saying was just useless and unimportant compared to what is happening to me. Still i listened.... or tried to, but said nothing at all. just the always useful "aha, oh really? ok, i see, i understand, aha, mmmm".

Left him and went to my work, i was worried about this menace of having my cards blocked. Yesterday i paid 150 usd (what i had left of the money i had borrowed) to one of my credit card that i was late. They released 80 usd but my card was blocked... i had a fear.... i arrived to the store and directly called the bank, my card was still blocked, talked to client service and they said it was because i just paid yesterday, it takes them up to 48 hours to unblocked... but.... "Although Mr i am seeing something else in the system, do you have any other debt with another financial institution?" Shit... damn... i knew what followed, i answered yes. and he said "I'm sorry to tell you that your card will remain blocked until you are up to date with all your debts". Sorry to say this, but i misbehave with him... started to scream and complain because i am not late with them anymore plus i paid 150 usd for nothing... and i needed my money.... once again, life is not fair with me. I know i am late with payments, but come on... i am trying to do my best... why can't it be a bit easier???? he was talking and i hanged up. Sorry man, but someone has to pay for what i am living and in this case you had bad luck. I had never behave that way before, i used to be very kind and understandable with people and super well educated... now i just don't give a shit about anyone... i hate them all, and i hate life and i hate everyone around me cause my life is becoming harder and harder and i just tired. I want to give up.

Now i have no money to do the first payment with international bank, it is blocked in the credit card i paid yesterday. I have another credit card that is not blocked yet, and i am also up to date with them... but i fear it will eventually happen. So... i am broken again.... mother fucker banks!!!. And i want to say something... this is also related with discrimination too... if i had cancer, i could tell the banks and they might act as the first option i mentioned before and my life would be easier.... but no... i had to have HIV.... if i show docs saying i have HIV, first they might react badly as the second option i mentioned, after that will call to social security hospital to verify if it is true, they might or might not give them any info, if they don't get it... they will call my boss to ask her if it is true i have Hiv... the result??? i will be fired, my co workers will be terrified of me... and well i will be fired (i think i already said so). If this stupid stigma would not be so big i could talk about my status to the banks and at work and they would understand me (perhaps) but just now i know i can not risk myself. So.... i feel i am being hunted like fucking rat.... and life is closing me all the possible doors and killing me slowly... i have no way out.

Then it happened.... i talked to my mother and argued.... had a terrible mood for the rest of the day... i am just so angry and my heart is so full of hate.... and pain... and frustration... i want to hit someone and make someone feel the pain i am feeling..... cause this IS NOT FAIR. And i doubted about God.

For first time in about 15 years... i doubted about God... and i knew i touched bottom..... i have faced all kind of terrible things before... jails, hospital, hunger, coldness, big needs, unemployment, all... but i never doubted about God being with me and i always knew he would help me. Today i doubted about it. I don't doubt he exist, i don't doubt he help others.... but i doubt he cares about me.... he does not... otherwise i should not be living all this right now... not all together at the same time.... and i feel so sorry while my tears fall.... but i have to be sincere... i doubt you are over there helping me cause the only things i receive everyday is just pain and pain and pain... and kicks in my ass all the time and hits in my face and my heart and i am just so fucking tired of all this. I wished i could die. And i understood the type of desperation, fear and pain that leads some people to suicide... i might not chose it, cause that would be like surrender... and i never liked that... i never surrender.. i am a fighter until the end... even if the end means my own death. God... if you are over there and if perhaps you are still listening to me... you know myself...

i am sorry i stopped writing.... had to go to bed and cry.... not long, 3 mins... i don't like crying... God... if you are there (and i know you are)... and if you are perhaps listening to me.. (what i am not sure and ask you to forgive me) i think... i feel... it is perhaps the time you insert your hand in this and do something. I don't know what kind of test is this, nor what kind of game you want me play... but this is already being too much... it is too much pain i cannot handle anymore.... i cannot get over this... why do you leave me alone? what have i done to you if i always have wanted to be a good guy?... have my life being so terrible that i need to face all this??? WHY??? why don't you show yourself when i need you???? why do you put me through all this??? ....

i know i failed test again, all saints faced hard times and they never lost the faith, even Job faced hard times, and today i remembered him... but i hope God understands.. i am not Job nor a Saint and i am sorry if i am weak but i am sincere with what i feel. Mother told me today not to stress.. cause that makes me wrong, it pulls my defences down and i might hit bottom... but how could i avoid to stress with all this? She told me twice today.. "believe in God and trust him, talk to him and ask him for help, perhaps he is just waiting for you to talk to him". Perhaps she is right, i have slowly and unconsciously stopped talking to God these days... i feel i can't concentrate to pray. Therefore is my request for help...God Help me!!!!!

I once read there two types of faith, one based in a reasonable though and understanding about what you believe and another one that is just blind. I am confused now about which one i feel. I am not sure if i have faith yet, but i really hope things will change and something good happens.... if fast.. is better.

In the afternoon i wrote to someone strong words, telling how i felt... i was too full of anger.. now after crying i feel more calmed and hope has came back (at least some). The rest of the day was calmed at work, and when we were about close... then a client came just 5 mins before we had to go. Damn!!! This is a mature man, who is also very prepotent and a total donkey with computers, he is asking about everything, and trying to guide other when he knows a shit about what has to be done, the first thing he said was "this shit does not work!!". Oh God.... i wanted to throw him out of the store with his fucking laptop and tell him.. "if this shit does not work then go to the hell and bother someone else!!!!!". Although i am professional and i respect others.. even if they don't respect me (i try i try i swear). Well how would it work if the donkey had not done the proper installation? he had not finished installing the service he bought to me the day before. I installed it, then his son asked me for something else, that they had done wrong... "to solve it, i had to uninstall all again and re-install it" - i told him (i should have left 15 mins before already) and he said "Then lets do it!!!". Asshole....i found no respectful way to kick his fat ass out of the store, so i preferred to do the whole thing again... it was done and he left telling me "if it does not function at work i will be back tomorrow, ok?" and i replied "if coming back tomorrow please come before 9pm, thanks".

Well this was my day. I don't know what will come next and i don't want to think about it, i just hope i will not lose my faith... losing faith would also mean losing hope and without hope... what is left to live for?

Labels: New life, same illness

These days i am taking things a bit easy, trying not to worry too much since it seems i can't change many things around me, and i am not talking about Hiv.

I went to talk to one of the banks i am in debt with, mmm... not so good news, i can reach the agreement for payment with them.. but if i do so they will cancel my credit card. The only way of not getting cancelled is paying 256 usd until Saturday... money i don't have... so.... well... i didn't sign anything cause i prefer to have some time to think on what to do. With the other credit card i could not talk in person but so far they have told me the longest that payment agreement can last is 6 months it means i will have to pay them about 70usd monthly and my credit card will be blocked too (not sure if they will cancel it too... but i suspect so). The problem is that i am earning 182 usd a month (after taxes) and how can i pay about 100 usd in these two credit cards, plus another one that is costing me about 130 usd monthly and another about 30 usd. That without counting the payment for my laptop, the money i just borrowed to pay back some banks, money for food, transportation, MEDICINES.... isn't it easy right?. That's why i don't worry... cause i know i have no ways to solve it.

While talking in the bank today i was about to tell that woman... you know i have hiv... like if that would make a difference so they would allow me to find some more flexible way of payment. Although i better closed my mouth, that woman would have screamed... terrified of seeing a "sidoso" (a disrespectful way people here call hiv/aids living people)... by the way... if i hear anyone calling me like that... i will definitely hit him!!! and he will see that a judo green belt sidoso has got no much patience. Well i talked to my mother, she advised me to relax and we might find a way to solve one of these things. So far i am ok with two of my four credit cards, mother advised me to lose one.. the worst, Mastercard Banco Centro Mundo (the bank has a low reputation i have been told). But to try to defend the other.. Visa Banco Internacional. Tomorrow i will call them again to see if we can negotiate a bit more, now more than ever i need to have my credit cards available in case something bad happens to me and i fall into urgency. Now i am not just an ill person... i am an ill negotiator!!! ... hope that helps, huh?

These days involved in poz forums have been quite good for me, there are so many topics going on in there that call my attention, and there are so many smart people giving their opinions and making fun out of all things. I like it. I think i am writing in every possible forum i find :) even in those i was not allowed to post (didn't know). While reading there was a specific post that touched my heart....

" sometimes after I speak with my son I break down and cry

I have been having to just break down and cry after speaking with my son....am I just losing it. I do not expect any answers as I know one needs to cry , just wanted to type out my feelings to an understanding group of people. I just want to take the HIV away from him and take it for myself, I am feeling so helpless. I used to fix his problems when he was growing up and I cannot fix this one. He is dealing with this much better than me or at least it appears so. When he calls me with sore throats, or coughing or diarrhoea I try very hard to reassure him that he is not doomed to die , but when I get off the phone I just cannot stop crying... "

It touched me deeply that i couldn't avoid to cry... few people can understand what she feels, but i do... cause her situation is same my mother is going through. I know that person is not my mother cause she does not speak English. Eventhough i really see my life in the words of this mother. Mother was always there to help me, motivate me, urging me to reach my goals... she was the one who convinced me to stay in AIESEC, i was too shy in that time... and when i was chosen MCVP of Aiesec in Russia, Belarus and Kazakhskan, she told me "I never expected to have such a smart son". Off course, all mothers say same thing... but it anyways means a lot to all of us. Few idea we had that this will end up this way... and i am sorry for her and for my sister who were very proud of me and always hoped big things will happen in my life (well they happened but not as everyone expected i guess). Hiv is too expensive illness... i am not referring to the money...but to the lives that are being wasted, the hearts that are being broken all over the world... and the tears and the pain hiv poz people and their families going through... if you add to that the stigma and discrimination they... better say, we have to face... it is just too much, too big price for something we didn't expect not even wanted to happen. Hiv is too expensive illness and it has to stop some way. In Guayaquil there is a Jewish restaurant with a slogan on the wall "Life is fragile... handle it with prayer" and i try to do so.

Labels: New life, same illness

Well, today was a good day with few not so good things....

Bad, i was having troubles to breathe... i think it is related witht he flu i had, today i was getting desperated cause i felt that my throat was getting blocked (same happened during seroconversion). Luckily it was not serious, i think once flu is over i will be ok again.

Good, i think i will be able to reach an agreement with some of my credit cards banks, lets see.

Good, diarrhea is still gone

Good, was calmed day at work and i am taking all my meds, not on time... but i am taking them all

Good, i started to participate in Poz magazine Forums, a virtual community for Hiv poz people or people with questions about hiv.

Good, actually REALLY GOOD!! I was accepted to publish a Spanish Blog at Poz.com / Aidsmeds.com two very respected U.S. Magazines focused on HIV and HIV living people. Here the answer i got today!!:

Juan Carlos:

I've launched your blog (it now appears on the blog home page at http://blogs.poz.com/)! I will announce this in Wednesday's AIDSmeds email newsletter (20,000 subscribers), and POZ will likely announce it in their newsletter as well (35,000 subscribers).

I've also created a thread in the Living With HIV Forum announcing your blog, at http://forums.poz.com/index.php?topic=11600.0. Please subscribe to this thread, and post replies to it as others welcome you to our blogging team.

Thanks for becoming our first Spanish language blogger! We're all very excited about this.

Peter

Peter Staley
Founder
AIDSmeds.com (www.aidsmeds.com)

This actually takes my disclosure to a different level. Well.... i hope this will provide some help to other latins who are newly infected and looking for info and a personal side of this. I have added a link in the side bar of my blog in case any of my spanish speaking friends prefer that one. Si alguno de uds desea puede leer mi otro blog en español. I have to clarify that for me both blogs are differents, in this one i think i am mainly talking to young people who is at risk of infection (we know aiesecers has an active sexual life, right?) but that know actually few about Hiv. In the other blog i will be talking to a community that is quite experienced, there are many people living with aids for over 20 years so my blog there will still be about my life but in some different point of view. So today was a good day huh? Cheers.

Labels: New life, same illness

Today was a normal day, woke up a bit late (have been going to bed too late latey right now 1h33am). I went to my sister's place in Duran a city 20 mins far from Guayaquil. I was feeling kind of weak.... perhaps the meds. Once there i played with my nieces, and had lunch... mmm that was really tasty!!. I don't know why, but i have the feeling my sister knows about my status... or at least she suspects something. Anyways i have to find the right time to tell her.

I read a bit about the Ecuadorian Coalition of People Living with Aids yesterday, and downloaded some docs, specially about discrimination and some other reports about Ecuador progress regarding the war against Aids. I'll read them.

To be sincere... today morning... i was thinking..."am i getting crazy?". I mean... before being infected i think i was a very stable person, pretty normal, but nowadays even myself realise how i am going up and down all the time.... i was worried. If you don't know there exist this Aids dementia complex (one of the thousand illness i never knew and i am sure you were also not aware of). One of the last times i talked to Claudia, she told me that developing clinical anxiety is normal in these cases.... but she asked me to fight to keep my emotional and mental control cause eventhough anxiety can be treated with meds, she does not want to do it with me. So i ask you to be patient with me too, there is lot going on here. I think i don't have aids dementia complex (i am just a bit paranoid but i will work on that).

News from War field. I got rash on my face. Both sides of my cheeks... it is not like the lacerations i had. These are just pink/red points that sometimes are more visible and sometimes no. From distance i don't see them but once close to a mirror... i see them all clearly... but off course i am the ill person so i see many things everyday in me... believe me. Mother told me they are visible but not that much.. looks like my skin irritated.. but it is clear symptom of my body fighting the hiv infection. There are several symptoms a person living with Hiv suffers before starting with meds. Prior to meds and once you tested positive it means your body recognised the infection and it starts to fight against it. Poor body does not know it won't win the fight... but it reacts like with any other illness... so here the synthoms:

• Lack of energy


• Rapid Weight loss


• Frequent fevers and sweats (specially at night)


• A thick, whitish coating of the tongue or mouth (thrush) that is caused by a yeast infection and sometimes accompanied by a sore throat


• Severe or recurring vaginal yeast infections


• Chronic pelvic inflammatory disease or severe and frequent infections like herpes zoster


• Periods of extreme and unexplained fatigue that may be combined with headaches, lightheadedness, and/or dizziness


• Rapid loss of more than 10 pounds of weight that is not due to increased physical exercise or dieting


• Bruising more easily than normal


• Long-lasting bouts of diarrhea (more than a week)


• Swelling or hardening of glands located in the throat, armpit, or groin


• Periods of continued, deep, dry coughing


• Increasing shortness of breath


• The appearance of discoloured or purplish growths on the skin or inside the mouth


• Unexplained bleeding from growths on the skin, from mucous membranes, or from any opening in the body


• Recurring or unusual skin rashes


• Severe numbness or pain in the hands or feet, the loss of muscle control and reflex, paralysis or loss of muscular strength


• An altered state of consciousness, personality change, or mental deterioration (memory loss, depression, other neurological disorders)


• Children may grow slowly or fall sick frequently. HIV positive persons are also found to be more vulnerable to some cancers.

WARNING: Not all of these symtoms show at the first stage of Hiv infection, the most common are those in fucsia (pink), that's what you have once you are hiv positive and while the illness go forward to make you weak. All the others are symptoms of a person who has already developed Aids. Off course the idea is never reach that part so your meds start just before falling into it.

So... what's the current strategy to win the war (almost all over the world)... Drs test your CD4, if you are above 350 you are just with simple prophylaxis, just like what i am doing now and have periodical Cd4 tests to see how you are doing. If you are below 350 CD4 they talk to you about meds but it is really up to you. If you are 200 CD4 or less... then you HAVE TO start with meds RIGHT NOW!!. If you are not with meds you stay with prophylaxis until the virus advances enough to pull your CD4 numbers down and reaching the limits i mentioned above. I personally don't like the waiting period... but well, this is how degenerative illness works, one has to be patient. I though i could stay long without meds... but now i understood it is unreal, there is no way to stop the virus, the only thing to do.... is to try to stay healthy so only the virus will affect your CD4 not any other illness, but there is no way to stop the going forward of hiv virus inside my body.

It is very important to understand that not all of these symptoms show together at the same time, and that having one or two of those DOES NOT MEAN YOU ARE HIV POZ. That's why you have to take the Hiv test every six months.

I my case i have developed several of these symptoms (lack of energy, rapid weight loss, fevers at night, fatigue, skin rashes, mental deterioration) and some others i should not have yet (rapid lost of almost 7 pounds, long-lasting bouts of diarrhea)... I know... i know... i worry, i do. Although without CD4 i will get no meds so i have to calm myself down, plus there are many other illness that might produce my diarrhea like gastritis or lacerations in the stomage. A person can only do what is near his/her hands, so far all i can do is to try to calm down and look after myself. Today diarrhea is gone. Good news huh? :) I will try to find a way to meet a non-expensive infectologist to talk about my rash... Mom is worried, and it is long to wait to my appointment in social security... so lets see.

By the way i just discovered my english ortography has been terrible, sorry to you all english speakers, hope you understand i had never needed to write about medical terms in english until now... so i am still getting used to.

A told a friend of me, Max, who is also hiv poz, that none of my friends in town are calling me nor talking to me anymore. Some of them post support messages on my blog but when i tell everybody i want to go out... none shows up, none seems to be up for meeting me (that's discrimination too dear AIESECers.. might not be intentional but it is discrimination at the end), and he told me something that left me thinking... "they don't want to meet you cause they know eyes cannot lie....". What does that exactly mean? i have two translations...

1. their eyes will tell me they are sorry and they feel they can't show themselves weak cause that might affect me.


2. their eyes will tell me they are scared and terrified of being close to me... not to mention the fear of touching me or shaking hands or having dinner with me...even after i have done this big effort to explain everyone i am not a menace.

Well.. whatever Max's words meant to express i have something to say... I don't need to go out with you guys anymore. I asked twice and none rised a hand. Fine... if falling into this new world means i will also need to have a whole group of new friends... then i will do it and they won't be only poz, cause i am not the Hiv virus, i am just a person suffering of it. Once again we all should eliminate the hiv virus from the world, not the people suffering of it..

3.00am here, too late... i have to go to sleep. I need to rest. I am fine.

Labels: New life, same illness

My life seems so clear in days like today... so calmed, so simple, so stable... like if nothing of all of the storms i have faced since december 06 would have been real. Today i was so calmed that my life seemed to be completely normal. So normal that i though... "perhaps i really don't have hiv". And then i remembered one of the first things.. i daydreamed after diagnosed....

"I was waiting outside a laboratory, waiting for some test results, perhaps CD4 or Viral Load test... i knew i had been diagnosed, but when the Dr came in... he looked at me stranged... and asked me:

And i complaint, but deep inside of my heart i was so happy... cause i was free...and i could be a normal person again"

And it is always after this part that i wake up and find myself, seating in front of my desk at work or sometimes in a bus going home, or perhaps walking back home at night... and i look around and think... "perhaps i am not really ill... also in this country such mistakes can happen. Perhaps i am really not an hiv living person". And i know i could eat that tale... and believe it, .... in negation.... but when i open my suitcase or backpack.. and see three or four different type of pills, when i go to toiled and realise my stomache is still weak or when 9pm or 9am arrives and i know i have to take all pills just now... it all falls from heaven again and i accept I am ill or better say i just give up.

Today i was a bit angry about something. I have to take these pills, ciprofloxicina... and i have to buy them cause in social security there is no. And i have found same pill with four diferent prices. 0.90 USD, 0.75 USD, 0.50USD, 0.41USD. Why don't they setup just one price? (preferably the lower). One has to profit in business.. but you know.. the difference between the first and the last is a lot... they will have a profit of over 50% if i would buy the first pill. That's not right. They are medicines not toys, is not luxury.

I am right now making a research about the "Ecuadorian Coalition of People living with Aids". Myriam and Max belongs to that group and Javico told me he is also interested in joinning them. He told me they do lot of trainning about Hiv related topics and organise several projects to ensure government pays attention to the needs of people living with aids. Should i join them? Lets see what they do....perhaps they might be like Aiesec.

Labels: New life

My first CD4 test

Ok, well.. sorry i didn't post this yesterday night but i was a bit busy with a surprise i will tell you next week. Before starting with the whole story of yesterday i would like to tell you a bit about mr probiotics, .... he has not helped me much. First he tastes really bad... ouagh!!! .... i mean it is not terrible but it is not a chocolate ice cream for sure, i though it would stop my diarreah but not, i am still flowing like a river (if such comparison is possible). Sorry if i touch disgusting topics but come on guys, remember this is an almost medical blog, lol!! You know the funny thing, since Mr Probiotic is an alive micro organism and physically they look like dust, i take them with water... but i have found myself a bit nervous about it, i mean... i have never drunk something that is alive, so when i put them in the water i try to drink them immediately cause i sometimes think that if i let them be there for long time i might see them swimming in my bottle of water!!! or requesting for help not to sink!!!! That´s what i call weird thoughts huh?

I woke up 4am yesterday morning by myself, i know i know... stress... stress... i decided to go to sleep again, i can be ill but i need to rest, mom called my at 4.30am as agreed, then i just went to bed again... sorry i just discovered i was not much mood for a Cd4 test, deep inside i wanted to avoid it, negation. I know i have to go through this... but i don't want to.

I arrived there, there was not a long queue, but man..... i had to wait for a bit more of half an hour, when i arrived i was fine, but during waiting time.... i became anxious... couldn't stop moving... looking at everywhere... saying myself "what the fuck!! why don't they move their asses?!!" The other room was crowded.... i was getting really nervous. Yesterday they didn't have reactives for some other tests, luckily Cd4 was not in that "list" look the way they publish when there are no reactives. I though: "they take turns, one day there are no reactives for this, next one no reactives for that one... next one no reactives for that other one....". While waiting i noticed something i though was weird... there were people going out of the lab with their small bottle of blood in their hands... i mean patients carrying their own blood sample!. I though "mmm that's strange, but perhaps they are in urgencies so Dr asked them to take the sample fast and bring it over... ".

Then this Dr (same the last time) came over, i am starting to dislike this old man, he is not treating people nicely... and when i saw him i feared he will reveal to everybody about my test like he did the other day with the black woman, luckily he didn't say a word... but i was breathing fast already. I expected to see the black woman yesterday, so we could chat... but i didn't see her. Instead of that i saw Lot, Lot of people taking Cd4 test, well i assume cause there were several gay people (how do i know? there were some slightly femenine). I have to clarify i have nothing against Gays, i have always been a gay friendly guy. I assumed the gay people i saw were taking Cd4 test, but you know...THAT IS NOT RIGHT. Actually some of them were not taking Cd4 and were not Hiv+ i guess. It is all a silly paradigm in our mindset. Well, i distinguished some people i have seen waiting outside of my Drs office so i though... well... i am not the only one for Cd4 test, in fact i really saw several people... i guess we all take the test same day. As i am new in "the club" and i haven't really talked to much people (i have been quite afraid) none approached but i could see, they all know each other... and they respect themselves, gays, straights, they chat all together without discrimination cause they know something bigger than silly paradigms keeps them together: Hiv, and they know they need to support each other. I wish people would not need to suffer of Hiv to accept others and no discriminate.... am i daydreaming? YOU answer this.

I finally got into the other room, and there was... same "nice" poster of the other day saying "hey watch out, you are gonna die of aids!" If you click on the pic you will get to read the first words "remember..." If you have read my past visit to this lab you will know what i am talking about. I heard someone saying loud "for all patients taking CD4 or CD3 (???) test, tell to the Dr in advance so he will deliver the blood sample to you to take it to Dr Villao office". Then i understood how it worked... damn... i will carry my own blood?!?!? that's scary..... Afterwards i saw in the other side of the room there were still the always ignored posters for Hiv prevention plus an invitation saying:

<<Association Manantial (Spring) kindly invites you to the conference "Human Right for PVVS" Saturday, May 6th in the door 4, 10 am>>

By the way PVVS, means people living with aids (in Spanish off course). Claudia told me that Association Spring is the support group of infected people within social security hospital, There are three main support groups each one in every hiv government programme in this city. I though it was interesting to have a support group, eventhough i don't like their names... Manantial (Spring) is a typical Christian or religious word, that refers to several parts of new testament... i mean, i am ok with the word, but not for a hiv support group, it makes me feel too close to heaven... like if i would die (off course i would but who wants to think about that??). When Claudia told me the name of the association first time i said "what a name!!..." and she told me "Yep, i know... i think the same i don't know why they have to chose such a names instead of being support group A, B or C or 1, 2, 3". Well, i realised after reading that invitation how much my life has changed... only two months ago i would have read that invitation and ignore it.... i would have tried to forget about it, and really avoid it... you know, hiv? no no no... not a good topic. And now... i read it and realise they are going to talk about my life... they will talk about me... i want to know my human rights, i have to learn to defend them. Only two months ago i would have never ever think of attending such a conference... if someone would have invited me to such i would have said: "human rights for aids people? no it is too depressive for me, sorry". Or i would have invented something else to do, same day at the same time... and now... i though "i have to be there". I started to check my working schedule and i think i can make it. I am afraid of going there alone... it would be to disclose myself to others in my city and i am afraid. I will ask Javico if he wants to be with me, if not i am going to go alone... i have to do it for myself. I won't invite any of you for the previous exposed reasons... and i understand you, this might be a seminary for me not for you. Although... i have a question for YOU ALL, do you know the human rights of HIV/AIDS People???? Yes or no?? which are they??? If you don't know them... how would you respect them????? I understand for you all might not be pleasant to be in a room surrounded by infected people (you might think it is like a room full of living dead) and you might fear of being infected and you know... that's not possible, but don't worry, i know how you might feel, i have been there too. I just think there should be same conference for non infected people... so you all can get to understand us better. The question would be... who would attend?????

While i was thinking all this i heard my name, ok... the big moment has arrived. Same old man that was checking orders outside was in charge of taking my sample. I told him "i am here for a Cd4 test and..." and before i finished, he had already inserted the needle without any caring or any warning... i though "OUCHH!!! MOTHER FUCKER, FUCKING BASTARD OFF COURSE AS YOU ARE NOT THE ONE WHO IS ILL, SON OF A FUCKING BITCH!!!!" While i was praying for him in my mind (lol) he had already taken the bottle of blood out of the receipt and handled it to me: Take it - He said. BUT the needle was still IN!!!!!!!!!!!!. I though "The needle is INNNN fucking bastard!!! you are going to make me bleed!!!!!!!!!! are you trying to kill me??!!!!!!!!!!" Then i realised i wasn't bleeding cause they are using a modern (finally something modern!!) system (Pic) where you put the needle in and then stick the bottle, once you take the bottle off... you don't bleed....and this bastard should take the needle out NOW!!!! Finally he did so.

Then he told me, "go to Dr Villao" and it was then when i realised there was something small and warm, very warm in my hand. My own Blood. My first Cd4 Test. My hopes for not starting with meds. My life. I was literally carrying my life and my future in my hands... and it felt so warm. I got shocked and felt nervous and afraid. I was holding my hopes in one single hand. We never really feel we can touch our hopes.... well... yesterday i did, and i carried them to the Dr Villao office. I watched the bottle while leaving the lab room.... and i though... "it looks so red" i know i know... but i mean i though "it is alive"... you know.. i am carrying a part of me in this bottle... and i don't see the hiv... but i can't avoid to accept it is somewhere there... and i wished again my story was not as it has been. It is sad... damn.... i want to cry now... same like in that moment, but i decided to forget about the past and things that will never come back... and then i though "what the fuck!!! i am carrying my blood in my hands and if it coagulates?" I knew i know nothing about blood. ( i was explained later that this bottles for blood sample have anti coagulation components... wow... science always amazed me) so i hold it tight in my hands to keep it warm (and because i was afraid of letting it fall on the floor because of my nerves) and tried to run fast to Dr Villao office... once i was near... i could not avoid do something weird and silly... but meaningful. I took a pic of this part of me that will define my future in this fight against Hiv. Here it is.

I know it is weird, might be disgusting, and all that you want.. but you know.. in that small bottle... is my future. My hope to keep alive... and my unknown reality... that small bottle will tell me... how good or bad i am in this war against hiv. It is not going to be the last bottle i will see in my life... but it is the first. That makes it different, that makes it so important.

Arrived to the Dr Villao office, she took the bottle without asking me anything. That's it? - I asked. That's it - She said. I wondered if she knew what the test was for, and what was my name and ... well... there were some numbers written in the bottle i guess that carries all my info. 282..that's me!!!. I was still in shock after such a bloody experience so much that when i was leaving the hospital there was a girl with a just born baby who told me "Hello" i replied hello but my mind was in other place... and then i reminded her!! She is the girl i met first time i went to see Dr, she was newly diagnosed after her husband was diagnosed hiv+ a week before. I turned around and said: "How..." but she was already away.. it was starting to rain so she was in a hurry because of the baby, i wanted to know how she was. I hope i can see her again, she is very young... would be like 25 or so. Life is so unfair with many of us. I hope her baby was not born poz, that would be so sad.

I reached home, did my post, flew downtown to meet Mother and Claudia and yes!! I made my mother to stay with me while in the session. When i just arrived to the foundation they were asking me how i was and all that and you know all fine and i told them about my bloody experience and they were terrified. Yep that's not human... but it is the way some people treat us, like if we were not human... and facing it... it does not make me happy.

I was asked about my diarreah... "ahh well... it is still there" Claudia and Silvia looked at each other... "YET!!!" yes, yet - i said. "Listen this is wrong, you have to stop it. It is serious thing Juan Carlos it is already too long time it is just too long. are you taking your meds?" - asked Claudia. "Yes i do but it does not work, i have tried with some probiotics but nothing have changed. Dr also told me if it didn't change i should try imodium pills but i haven't done it cause i was expecting everything would turn out ok" - I replied. And they all almost killed me.

• Claudia: But Juan Carlos, if Dr told you to take imodium pills you should have done it


• Me: i know but i mean i don't like pills too much and i though with the other medicines it would be fine


• Claudia: But Juan Carlos you have a month and a half with diarreah you are loosing weight!!! your body is wasting!!! you have to stop it now!!!

They are right. During my appointment with Claudia she pointed several things i was doing wrong. First, my communication with Mom, there is a problem of communication from both sides - She said. We defined some ways to work on it and finally my mother accepted to meet her and have 1 to 1 sessions. We talked about the fact i have to tell my sister about my diagnosis... so.. i will start working on it. Oh God!!. Before finishing Claudia pointed me something very important.

"Juan Carlos, you have to understand something. It is very good you are optimistic about your future and your life with Hiv but you CANNOT GET TO THE EXREMES. The extreme of optimism is NEGATION. All extremes are wrong, you have to be optimistic but don't deny something wrong is happening to you, this diarreah is a clear example. You are just thinking it will fix by itself and that is not going to happen, you are optimistic thinking nothing will go wrong and you are not understanding there is something going wrong already and you have to SOLVE IT NOW. Plus, you mentioned you are not taking pills on right times... listen, while newbies start visiting Drs they are prescribed prophylaxis to stay ok and without synthoms but it is not only because of that... it is a training. Dr prescribes you medicines to get you used to the strict schedules you will have to follow once starting with ARV (anti retro viral medicine), and you know.. ARV are not avoidable, despite how good you are now... all hiv patient touch bottom some time and ARV therapy starts, that's the truth and you know it. Once you start ARV your schedules will be tight and you have to be punctual. If your pill is at 10.15am and you are swimming on the beach... you have get out of water and run for your pill, or if you are climbing Santa Ana Hill in the stair number 305 at 10.15am, you HAVE TO stop and take your pill. You cannot be late!!! You have to understand it. If you are late it is a fault to the protocol and you risk yourself. This is something patients usually don't know but you have to know it so you can understand how important this process is, please... be more careful and go back to take the medicines at the right time."

uff... this is all bigger than i tough. Although i knew it... i was still in negation.. nothing will go wrong, nothing will go wrong... well dear Juan Carlos and dear friends... some things will go wrong, some time, some where. The good news is that they will not remain wrong if i stick to the process. Ok, i got it. We left and i went to buy the imodium pill, it is supposed to be a pill that cuts the diarreah but does not solve it. For that i have to keep on with Mr Probiotic and the other medicines. I took one yesterday night... and i am still with diarreah... ok, don't panic, lets give them a chance to work. I worried about what Claudia said... so i weighted myself yesterday.

• 07/03/07 Before getting ill, 82kg


• 05/04/07 Met my Dr first first time, 78kg aprox


• 11/04/07 Met with Claudia, 80kg


• 19/04/07 Yesterday, 79kg

Ok, my weight is definitely going down.... like the economy in latin america. I do worry, but i won't stress about it... instead of...i will do something. Since today i will be more strict with my medicines and schedule. I will stick to my diet (which i wasn't doing as you knew) and will pray God for a big help. The problem is not about loosing weight, but about loosing water and with the time... losing muscular mass... and the wasting syndrom and then... shit!!! Lets stop it. That's it. I will do something and that's all. Whatever happens in future only God knows and i will trust him and not to worry, lets focus in right now. Period.

I told Claudia i disclosed in internet, and that my mother was worried about me and my safety. No mother wants her son to be pointed on the street. After asking me about the reasons why i have done it, Claudia told me "you know it is good you do feel you have a reason to for living and you want to fight for your rights and help to prevent others. Although you have to understand what you do affects your family too, so be careful, and think what you do. By other hand is good that you show your face and put it in front, cause many people don't, i have met with you 3 people who have been able to say to the world i am hiv+. And that's good cause that helps others to know and understand what it is all about and to know this is not as bad as they think and much more important... they need to learn to know there is nothing to fear, no reason to discriminate you, you can have your normal job, a normal life, you can even marry without putting none in risk. I am glad you are doing what feels ok for you, but... remember... not everybody will react ok to what you do. With the time, you will meet people who might hurt you because of what you are doing now... and you better prepare for it. It takes time to educate others... and pioneers always face the hardest".

I just hope i will never complaint to myself for what i am doing... until that time. i'll keep on posting. There is a whole new world here... and someone has to show it ... so others can get to know how it feels. Last thing i asked to Claudia was.. "i have seen all my friends going bad.. in some specific time and heading to hospital bed... all of them... and i am afraid and i don't want that....i don't want to be that close to heaven yet, is it statistically possible that i can be myself, taking meds and never hit hospital bed?. She said. Yes. It is statistically possible, i have several patients living with hiv for over 15 years and they have never hit a hospital bed. And that made my day.

Labels: New life, same illness

Hi there everybody, 8.42am here and i just came back from Social Security hospital after taking my CD4 test.... i have a word to describe it...SHOCKING. I never knew how much this illness might hurt you emotionally... now i am starting to know... you see, i have hiv... and i feel nothing... my body is fine except for the never ending diarreah... but apart from that i am perfectly ok and in great shape, but my heart, my thoughts and my feelings are going throught hard times... i had a bit of a rest... but it all began again.

Yesterday morning i woke up early and got ready for my seminary at Sheraton Four Points in Guayaquil, i was soooo looking forward to it, i am not sure if i haven't told you but i have some fetishism with 5 stars hotels, mmm!!!! they are a big turn on!!! Lol.

This is a pic of me getting ready for the big event and this is another of me getting ready for the big event, yep.... i was very ready!!!

Killer smile huh?

So i left i was a bit late but i still had chance to arrive somehow on time, i was planning to go by buss downtown and then take a taxi cab... and then... shit happened (one more time...) i forgot the entry ticket. Damn!!! For God sake!!! what happened to me?. I took a taxi back home, climbed the three floors to get to my apartment and fallen in the stairs.... ouch!!!... but nothing happened, just some red hit in my hand (luckily i didn't bleed or anything, i don't like to bleed when i go for a nice conference... it doesn't look good, lol). Took the fucking entry, went down and looked for a taxi... Mom called and well... i told her i was late, what a pity - she said... As for me, yesterday morning conference was my award and i would definitely get it. So... despite the few money i have i took a taxi from my house to the Hotel. It cost 6 usd (i could have eaten 2 meals during 2 days with that money.....) but whatever... i felt it was ok, that conference was important to me. Before reaching there.... a big car jam.... damn!!! I was in a avenue with space for 4 lines of cars... how come a car jam happens???

Oh... a car crash... at least it was not me. That would the last thing i need now. Well i arrived, i was very happy and motivated eventhough i was half an hour late (ok now you see there is a reason behind every time a Latino arrives late, it is not just culture... shit happens too!!!). I was taking the stairs to the first floor when i suddenly found a friendly face.... Gabriel Mira!!!!

Well for those of you who don't know, Gabriel Mira is a guy couple of years younger than me and he was financial director of Huancavilca Foundation, an ngo that was taking AIESEC interns quite often during last year. I met him in 2006 i think or 2005 when i was chair of the AIESEC in Ecuador 40th Anniversary Ceremony together with Diana Patricia, it was fun, because i first hated him that night, i was trying to get all guests in their chairs and this guy was fooling around, i sent several people to ask him to sit down... and he was just fooling around again. I remember i though "mother fucker just sit down once for all!!!!" hehehe, after the end of the conference, we got to talk... and that was it.... we made click. He is one of those people that when i start to talk to him it feels we have been friends since years ago... we laughed, made jokes, went to the after party, it was such a funny night and we spent it together. Everybody asked me "have you both met before?", i replied, nope, just couple of hours ago. He is a very smart and cool guy, i have seen him couple of times after that event and well it was already long time without seeing him, so it was cool to meet him again. Although meeting him brought me some side effects i was not expecting, Gabriel is a wise person with big sense of empathy that sometimes he does not know how to control or how to use it in the appropriated time (and yesterday was not the appropriated time) .... when we met we started to talk....

• Me: Gabriel!! How you doing?


• Gabriel: Juan Carlos!! hi how you doing?


• Me: I am doing fine thanks


• Gabriel: Nice, how is life treating you???

OUCH!!!!! ouch!!!ouch!!! that was painful question... the wrong question in the right time. Gabriel should learn one can't ask everything that comes to our minds all the time.... and that wasn't right time for that question. When i told him i was doing fine, i really felt it. I feel i am fine and that's ok, but when he asked me "how is life treating you?" I found just one answer.... PAIN.

Few days ago i said "i think i burned most of my pain in my first days.... there might be some pain left inside yet, for sure, but so far... i haven't found it.". Well yesterday he helped me to find it. I found the other part of the pain that is left inside of me. I answered him: "My life is doing fine, everything is ok". I was lying... and he realised it cause he asked me same question again and again... until i told him, "i told you already my life is doing fine". Although he is smart, we have good empathic connection.. he knew that was a superficial answer, but he would have not wanted to hear the real answer for his question... the real answer to "How is life treating you?" in fact is "Life is treating me like hell, like a big piece of shit. Is kicking my ass all over the place and don't giving me a time to rest, it is destroying all the things i have ever wanted and putting my world and my life upside down and i feel it is a big big crap and i am just living in fucking hell.... yeah, thats how i feel life is treating me so far... ah... by the way... i've got hiv and it is nice to see you". Sorry, i might be overreacting... but that's how i really feel. Is it possible that i feel fine internally and i feel life is treating me like a fucking bastard? YES. Because internally i am trying to rebuild myself and i am trying to create something new, somehow i feel better... but regarding how life is being with me...talking about the facts i have faced since December 06 until now....i still deeply think this i am facing is not fair. I didn't deserve this... i know none does it... but you know... i have tried to be a good person all my life even when people betrayed me, i always wanted to keep my hands clean... i have starved in other countries and still... i tried to make a good work, i have given lot for AIESEC and working for others... and putting in risk my own security and sustainability... and what do i get? A diagnosis of Hiv. It is not fair, it is not just!!! I AM ANGRY!!!! LIFE YOU ARE JUST A BIG PIECE OF BULLSHIT!!!! I HATE YOU!!! I HATE YOU!!!!!!

That's not even half of what i feel... it is true that i want to cry... but i won't do it... won't do it now cause it makes no difference at all, nothing will change.. even if tears are falling down my cheek i am still the same... a guy with hiv... i can't step back, can't leave this behind and forget about it...I can change all my stars but this one.... eventhough some times like now, i wish i could change it all and re start again. If Mr Life would be here in front of me, i would make him feel how is to be hit by a comet until make sure he gets just a small idea of what he has been making me live in this year.... life.. you owe me all this you are making me face, you hear me!!?? you are in debt with me!!!!

I know i failed the test. I mean Gabriel's question (not the Cd4 test, if i fail that test i will suicide!!... ok, perhaps no... lets talk about this later). I think Gabriel's question was a test from God... that specific type of question is not common in our daily vocabulary, i mean at least i don't get people all the time asking me how life is treating me. I know God wanted to see if i had overcome all this, eventhough he knows i haven't. Perhaps he wanted to see if i was able to be sincere with myself and accept i still suffer inside and not to take the common shelter saying "i am ok, i am ok" while you are dying inside. I think and hope God has mercy with me and that he understand how hard this is being to me, i know he does.. God knows me... this is my life and i have no reasons to lie to anyone, cause i have nothing to prove to any of you...NOTHING. This is just God, the hiv and myself. I was told long time ago that the first step toward getting better is to accept the fact you are suffering for something... and yes i do. I do suffer from this pain sometimes. Yesterday night i didn't want to go through this cause it could affect my Cd4 numbers, plus i already got some small flu (i think my lil niece gave it to me together with my Mom sore throat) so that would put my Cd4 numbers low.. but i hope not that much. I expect my Cd4 being at least 600 (min is 350) but the best would be if it is 800!! That would give me some time before starting with meds.... time to get ready for it. Now i am done with the Cd4 i can let myself face and feel the pain still inside of me.... suffer it once more... and then burn it, and throw it away... it is not going to happen all now... i will respect my own times. I am crying for a death person (the old me) and that's never easy.

After meeting Gabriel we got into the Hall for the seminary, and it was crowded... wow.... 1200 people. Too much if you let me say, we didn't reach the hall where the expositor was so we had to watch them through internal video circuit. The training was nice, the expositors were Argentinians and they were really nice speakers, eventhough i would have wanted to get some expositions from Columbia as well, they are good salesmen.

During conference Gabriel and I were making fun, heheheh, it was so funny you know, we were like two kids fooling around, chatting, laughing, bothering each other, he is such a funny funny guy. The we had a nice coffee break, and it was cool, people was eating as much as they could. I needed to eat something cause Mr Probiotic made me feel like vomiting several times... i will talk to you about Mr Probiotics tonight....

After conference was over Gabriel and I exchange phone numbers and he left to his job and i went to mine... but... not before taking some pics about this nice building where Sheraton Four Points functions in Guayaquil, I hope you like them.

Rosa, my co worker didn't attend the seminary, she said she was sick but i think she didn't want to be there. As for me i was very happy after it and went to work full of motivation. I had a good day, everything went fine, i preferred not to stress thinking in any of the things i found yesterday after Gabriel's meeting. I had a nice day and nice night. In the afternoon i got an email from Myriam, telling this

"JuanCa.. where are you? you are lost from my sight!! I am sorry we could not go out when you had free days but i was very bad that Friday and i spent whole weekend with fever and diarreah. I went to see Dr yesterday and she told me it is because i am new with those meds. I am just starting to leave bed these days... i had been very bad, imagine i had terrible pain in my ears, my throat was swollen and with the diarreah and fever i thought i would die. Although... well God is nice and he does not want that anything bad happens to me. Lets keep in touch. Kisses. Myriam"

Myriam is a mature woman (i was told about 40+) who is Hiv poz as well and she is married with a non hiv poz man. I don't know her whole story but i know one thing, they love each other. Myriam is general manager of her own company and is also leader of the "Association of Positive Women of Ecuador". Although much more than that... she was my first angel once i got diagnosed. I talked to a friend of mine from Quito who is member of the "Coalition of People living with AIDS" and he told me to talk to her. The day i was diagnosed first (13/03/07) Myriam spent over two hours on the phone talking to me... explaining me about hiv, how it works, sending away my fears and listening my pain.... i remember of telling her several times "i don't want to die... i don't want to die... i feel lost.... what do i do?" She was nice, she was considered, she was caring, she was a friend.... and she has been with me since then. We haven't met in person so far cause our working schedules are difficult to match, but we talk often. Myriam... i owe you a big part of what i am doing right now, and i want to thank you for being the first ray of light sent from God after the hiv comet destroyed my world. You gave me a hand, you gave me support words, you made me realise this was real (she was the first person telling me... look, you are hiv positive and that's fine.. there's nothing wrong with it), and you made me see and dream i could be even better human being. I pray to God, he will always keep you safe. I know everything will be fine for both of us. And yes... she and Javier (both Hiv poz) are the only friends in town who contact me once everybody knows i am hiv poz. It's nice to see how strong or weak a friendship can be, isn't it? Plus it is nice to know we all believe in the concept of no discrimination... right?. Heeey!!! for second time..... to any of my friends (if there is still any who is yet proud to be)..... i am Alive and i want to go out!!! I don't bite!!! (just when i am hungry!).. come on guys, if you don't want to go out with me i will do it alone... but i will... and you will miss the great chance of having my charming and funny and always desired company :)))) plus... i won't be with you guys forever.. so you better enjoy me now!!!

Ok it is 10am, i got to go cause i have appointment with Claudia in half an hour and before that i have to past through my work, then i will start working at 1pm until 9pm. Later on tonight i will tell you about to day. Lets keep the mood up and make of this day the best one of our lives!!!!

Labels: New life, same illness

I have several things to talk about today... i tried not to post scientific info today, but it is kind of hard, there are too much scientific words in this... i promise i will try to reduce it.

First of all, Today a new blogger was just borned!!!! My dear friend Javico, just started his blog. Javico is a very good friend of mine since over three years, and was also diagnosed Hiv Poz last year. You can check his blog here Javico (Ecuador) (Spanish only). I am glad he decided to write too, cause first of all he is a great writer, this guy has poet's soul. Plus he is a very deep person that will give us all a different perspective about what is to live with Hiv. Javico has faced hard times but has been able to get over them and i am so proud of being his friend, he is one of those people that once you meet them... you thank God for being so lucky. I also like his address "los amantes de Tebas" (the lovers of Tebas), refers to an small army in the ancient Greek times, an army that was victorious because every soldier fought not only for his life, and his country but also to protect his lover fighting next to him (remember in ancient Greek homosexualism was a common practise). I like that story, plus Javico is fond of reading about ancient cultures and mythology. You all will enjoy his blog.

As for the rest of the day, it was fine, i borrowed some money to try to pay some of my debts, i know it is not smart to borrow money to pay debts, but... well... there is nothing else i could do. Good news today, My boss called me and told me she had chosen the best 2 salesman of this month to send them to a training at Sheraton Four points in Guayaquil, and... i am one of those two!!! Yuppiee!!! Yuppiee!!! who is the master huh?? who is the master???!!!!. I am a winner!!!. So tomorrow and Thursday i will have training at Sheraton since 9am until 1pm and then i have to work from 2pm until 9pm. I know i know... long schedule... but it is ok for me, i like to work... eventhough i know the girl who will be attending this training with me is going to complain...she does it all the time. One day i would like to tell her... shut up!!! Well i am happy, plus i hope i can meet some interesting people at Sheraton, i like to meet new people. I needed to change environment and nothing better than a 5 stars hotel, don't you think? The only problem so far is that i have my cd4 tests this Thursday so it means i will really have to wake up early that day if i want to get my cd4 done and have time enough to arrive to the training on time cause Sheraton is at the other side of the city. Cross your fingers, i am winner i can do it!!.

I had some discussion with my mother again today, she woke up with sore throat and visited a Dr, and she told her she has a son who is newly diagnosed hiv poz. I was a bit angry when she told me, i mean i asked her not to mention it to anyone. Dr told her we both need psychological support and that my problem with diarreah (yes... i still have diarreah... it is going to be a month and a half) is because my intestinal flora was destroyed because of the virus. Dr kindly gave to my mother some medicine about it. Ok, lets define intestinal flora according to wikipedia "The gut flora are the microorganisms that normally live in the digestive tract and can perform a number of useful functions for their hosts. Research suggests that the relationship between gut flora and humans is not merely commensal (a non-harmful coexistence), but rather is a mutualistic, symbiotic relationship.^[3] Though people can survive with no gut flora,^[4] the microorganisms perform a host of useful functions, such as fermenting unused energy substrates, training the immune system, preventing growth of harmful species ^[2], regulating the development of the gut, producing vitamins for the host (such as biotin and vitamin K), and producing hormones to direct the host to store fats. However, in certain conditions, some species are thought to be capable of causing disease by causing infection or increasing cancer risk for the host."

So, since the very first moment i was diagnosed i was told that we all who are hiv poz have our sstomaches exposed and sensible, that's why you have seen on tv many people dying very thin... one of the most serious synthoms a person develops is the long term diarreah. That leads to wasting syndrom or cachexia (Loss of body weight and muscle mass, and weakness that may occur in patients with cancer, AIDS, or other chronic diseases). I know my diarreah is not a good synthom... i know once my defences go down i have the risk of developing this... but so far i am not worried. My diarreah is serious thing but i really think it is just lack of intestinal flora. My Dr at social security requested me several fecal tests to check what is going on, so by May 8th i will know what is going on (long time to wait huh?). In the mean time i was checking about different ways to reflourish my gut, looks i will go for gardening in my free times :) I found i can do it by using probiotics (a live micro organism of human origin that once digested produce terapeutical benefits for the host's health) if i am not wrong that's part of lactobacillus family. I know the blue pic is not very motivational but i liked more this other pic on the right side, where Mr Probiotic and his friend are doing their gardening job (it convinced me to take this medicine). So... i took the first, i will follow with them every 12 hours and lets see how it works.

Back to my mother... i am a bit worried, she told me that she mentioned to the Dr she is having headaches and that she sometimes fears she might not get over her throat infection. I think, she fears of being infected.... understandable i guess, everybody has a big fear about this (now you see the effects of the lack of correct education about hiv... ) but it is unreal. There is no way for me to infect her, we can share spoons and even with it i could not infect her. Although there is too much bad info on media, i think she is afraid... of me. That's sad.... i am not a monster you know.... i am not. I think she is becoming hypochondriac (A person who has hypochondriasis, a disorder characterized by a preoccupation with body functions and the interpretation of normal body sensations (such as sweating) or minor abnormalities (such as minor aches and pains) as portending problems of major medical moment. Reassurance by physicians and others only serves to increase the hypochondriac's persistent anxiety about their health). I asked her again to meet Claudia and she refuses, she thinks i am the one needing help, not she. I accept i need help and i am receiving it, but she is not happy with my psychologist, nor with the treatment i have received in social security services. Well... i mean i know things go slow, i know they don't have materials nor all medicines... but THAT'S ALL I HAVE. I can't afford medicines by myself, so it is better not to complain and do the best with what we have. She still told me that i needed another opinion, ok, that's fine... who will pay it? cause i am broken.

Mother asked this Dr she met today if she could attend me....i mean... come on!!!. I don't have flu... i have hiv!!!!!! I can't go to any Dr on the street to ask, hey... can you treat me?. I believe (oh my God i really believe!! and hope not to be mistaken) that social security Doctors are specialised in hiv (eventhough specialisation about it in this country would be a miracle....) but i mean they are treating so many people, they must be experienced. I don't want to risk myself more. That Dr told my mother she can work with me by using healing energy... and music and so on... ok, lets clarify this. Alternative medicine (natural and spiritual) is also useful in hiv cases, basically in terms of rising your Cd4, but what is advised is to follow it together with normal treatment based on anti retro virals medicines (ARV). So far i am not in need of any of both, plus i can't afford them. I know my mother is confused, worried.... but she has to calm down....she is making me worry about her... when i should have no stress. Javico advised i have to demonstrate her how good i am... so she will not be worried. Another thing to do in life.... now i will become a performer! why people don't let me be myself? why do i have to prove something to someone all the time? I don't need to prove anything to anyone!!! but i will show my mother how good i am because i love her.

And to finish... i had sex again. (not bad huh?) Off course, it was safe and with someone who knew my hiv status. In fact it was with someone i dated long time ago and whom i used to meet from time to time. This person is one of those people you meet and drives you crazy... hot body, brilliant mind, good heart, nice voice, nice hands, suggestive lips...... i always liked this person. I have to admit i felt something or perhaps feel something every time we meet, but this person doesn't feel the same and told me several times. Then, i accepted to meet this person for going out and casual sex from time to time. Today was one of those times, and sex was fine... actually very good. Although i ended up unhappy. I mean... many times in my life i accepted things like this... to be with someone who just desired me sexually but not loved me... and it was fun, for sure it was... but didn't bring me anything good at the end. When sex was over today, i felt myself guilty, silly, stupid... like if i had failed to myself. I mean i am trying to recover myself, my own self-steem... fighting to be respected by others.... why don't i respect myself a little bit? why did i accepted to be used as a sex toy?. Off course, men never think like that... or better say... never think. I was like that, but now i am tired of it. If i will have sex, it will be with someone who feels same i feel, i am not a saint... but i will try to never be with someone i love but who does not love me, it's not right. I will respect the new myself.

I know you don't understand all things i say, take into account it is also about the cultural settings we have, so that's ok. I just wanted to point, sex for me now... is a different thing. Ok gotta go.. tomorrow training starts very early, that's great!!! wait for some pics!!.

Labels: New life, same illness

It's a beautiful day... yep, it was.

I have free days today and tomorrow, wow... it feels so good...mmm.... stayed awake until late last night and woke up at 9am. I had to deliver some stuff to work and was getting ready when my mother told me that my godmother invited us for lunch. I though there is something going on there.... i think she knows something.

Well i got dressed and though... come on it is free day, i can dress the way i want... so i did. Before, when i was younger (nowadays 29 years old) i loved sport clothe, i have always been sport kind of guy, love swimming, jogging, basketball, chess (it is an sport as well!) and well.. i guess it is good to say i am green belt in Judo. That's why i have been always healthy.... well.. mm until now. The thing is that i love to dress sporty, and i love to walk and walk and walk, it makes feel alive. Co workers were very funny today and said i was looking like boy scout, lol. To be with these guys is always so funny :). Here two pics of me.

During morning i talked to Javier one of my good friends since over 3 years ago, who discovered he was hiv poz 3 months before me. When that happened, he decided to be away from me and didn't let me know his situation, he faced hard times... he was in hospital for some time, ... i don't know the whole story, but it seems he was very close to die. Luckily and thanks to the medicines, he's totally ok now. He keeps on working as an University teacher, looks a bit thinner now, but everybody is behind him :) His health is stable, he is under treatment and i have seen this change in his life has been for good. His family supports him, and now his relationship with mother and brother is so good and strong, not like before. As i have said before, virus development depends on every person, i think that Javier realised he was ill when his viral load was very high, that's why he was in hospital under intensive care, he might have not realised when his seroconversion happened, as i told you before... it seems to be just flu.. a bit aggressive and then you think it is all ok, but it is not... and when people do not take periodical hiv tests (at least every 6 months) you can't identify the illness.

As for myself, my last negative hiv test was about a year ago, so i "assume" this is recent and every time i say so people tells me "God blessed you!!". Yep, i am a winner, a lucky winner. So far i think i am ok, don't know my Cd4 but i think i have it a bit high, i know... sometime i will touch bottom, and my body will fail... but i don't know when... but what i know is.. when that happens, i know medicines will help me. I didn't take hiv test every six months cause i was scared about this illness like most of you..... and every time i took the tests was a nightmare.... and i always promised i would change my way of living... but then i just decided to avoid thinking about this illness... that was wrong, if i would have understood better how important was to play safe, i would have saved my life. Now i want to save other's life while saving and enjoying the new life i have received.

So.. back to the story, well... after work i went by buss to my Godmother's house, i had a trouble in the buss... here in Ecuador sometimes there are some people with bad faces jumping in busses and you know... talking like gangsters.. and "asking" you "nicely" to buy them candies. Sometimes if you don't buy them... you get robbed, or insulted or anything. I was unlucky cause they saw me talking over my mobile with my Mother so i was risking to be robbed. I decided to buy a candy, but i had no change (and had few money in my pocket), they didn't want to give me change.. and i complaint: "i want only one, give me my change". They looked at me and said something i didn't understand and thrown the other candy to me and left... i was so angry... come on they left me with one single dollar in my pocket. I was pissed off, and i though "i should have told them... give my change mother fucker or i will infect you with hiv!!!" Lol, sorry if you don't find it funny but i do :) lol!! i can imagine their faces, confused... scared.. as well as the other people in the buss..... but i don't think it would have worked anyways... plus, Hiv is not like a gun, i cannot shoot it just like that (if i could it would be a very good defence against thieves, lol!!!). The true is that even if i cut my hand and put my blood on one of those guys hands, they would not be infected (unless my blood touches a recent hurt they had). Hiv virus dies almost immediately once exposed to the environment. That's why the only way of contagious are:

1. Unprotected sex - that is, sex without a condom.


2. Blood-to-blood-infection when using a contaminated needle or through transfusions of contaminated blood. Today, in most of the countries all blood that is donated is tested for HIV so this route of infection is extremely unusual. Although... in Latin America, this still happens.


3. Mother infecting her child. The child can be infected during the pregnancy, during labour or, after the delivery, through the breast milk. That's why all mothers should be tested during pregnancy.

Those are the only ways of contagious. So as you can see... i can't shoot hiv like a gun against thieves... that's so bad :( Lol!!! Well, we went to my Godmother's house, had a nice lunch. ... but there was something out of place.. i mean since the very first moment they saw me... there was this... strange way of watching me, somehow like guessing "are you ok? are you feeling right? poor you.... pity this happened". I haven't asked my mother, but i think she told them. I asked her not to tell to anyone, but in this case if she did, it is fine. Three weeks before i was diagnosed, mother told me that the husband of the daughter-in-law of my godmother was hiv poz, it seems this guy was really in big troubles and even felt in comma. One more time, medicines take him back with us on this earth. So glad medicines work!!

Funny thing is that two months ago, there was almost none in my world with hiv (apparently) and now that i am ill.... i just realise Hiv is all over the place... all over the city. Don't be naif!!. I even heard a mobile phone conversation today, while downtown where this guy talked about someone with low Cd4!!. According to statistics my city is the one highest number of infected people (diagnosed) in the country, now imagine those who are not aware of being infected and keep on infecting others??? You can infect someone since the moment you were infected, that means before you become seropositive and before your hiv tests show the infection inside of you. One more time... safe sex is not optional guys.... got it?

Well, we had lunch, they gave me some juice made of a special sort of tomato (very typical in highlands) and that was like a bomb in my stomach... ouch!!. I also got a phone call from my boss and i had to met her downtown so i had to leave... and when leaving... my godmother and her mother (who is someone i dearly love like my grandmother) came to me and asked "do you have money for bus? if not take this... it is fine". I had only one dollar in my pocket but i didn't take it... i mean... they had never in their lives offered me money.... there was something going on, they knew something.

Well, went downtown, solved the working stuff, met a friend and met an alumni and you know chatting for a while, social life that i haven't had in long time, then went with Mom to my sister place and played with my nieces and then came back. In the way back.... i decided i would give a gift to myself and my body. "Tripa mishky" also know as "tripita"!!, Mmmm i know i am not supposed to eat outside because the risk i have with food badly cooked, but come on!! once a year... it is not bad!!!. You know... i am a good guy, very nice person, and i am trying to change the world... come on, let me eat a bit!!!

Yummie yummie, it was tasty tasty thing. Tripita is very typical dish in Ecuador, mostly sold and prepared by aborigens, but it is sooooo typical like the hot dogs in the streets of NY. Tripita is made of roasted cow's guts (i assume) and you eat it with your hands (exotic huh?). That was my day, in the night i talked over with Javier again, he told me he is feeling down sometimes... missing his past life... and off course he worries about his defences going down.... (later on i will explain you the relationship between motivation and cd4). I told him, about how i have handled, i mean... we have to have the time to suffer for our big lost, to lose your life and your health forever is the biggest lost a person can have... sometimes you feel like an stranger in your own body, like someone who died .. but is still here... around others, but without being part of the "normal" world. As for me... i think i burned most of my pain in my first days, and i was very sincere with my feelings... that helped me to let them go.... there might be some pain left inside yet, for sure, but so far... i haven't found it. The reconstruction process of my new world is keeping me busy and happy. I like to create!! or re create in this case. As for him, i advised him to burn all his pain and do the changes in his life he feels he needs. And not to try to solve all stuff immediately, to go one by one... after all... we have a long life ahead to solve all of our problems. I made him promise me when i just got diagnosed, he would live until 100 years old, and i promised him the same.... and i always fulfil my promises. ALWAYS. I know he does it too.

Hope you all also had a great day, good night.

Labels: New life, same illness

Today i wanted to have a day without Hiv, a day where i didn't have to talk or think about it. We all need a rest about this topic, don't you think so?

Unfortunately i could not, since yesterday afternoon, i am having some troubles in my face, some small lacerations. They itches a bit and while trying to calm them i ended up making them more red and visible. First one was yesterday in the left side of my face and today another one in the right side of my face. I got worry.... i asked couple of friends if it could be the beginning of something... i mean, they are appearing in my face... if so i have to control them fast!!

I was told that they are NOT related to hiv. You see how paranoid WE are? Lol!!! Oh come on, lets not be silly, not everything that happens to us has to be related with Hiv. These lacerations are placed down my bear so it can be that due to the hot weather my face was irritated and while itching i just got to make it red. That's all, you see... we have to lose our fears hehehehe!!!.

The rest of the day was fine, having fun with my co workers at work, went to vote and had very good sales today, was a good day, good good one. I just had a trouble at night.

I told my mother about my disclosure on internet. She wasn't happy.... well... i guess it is not normal way to disclose.... mother asked me.. "what if your sister reads your blog? you know sometimes she does it"..... and i felt afraid, my sister does not know about my health condition. Or perhaps she knows already but don't want to let me know... i haven't told her cause i think she might be afraid... and might not understand it, and then i could have troubles to see my little nieces and they are like my daughters, i love them a lot. Well... Carmen, if you are reading this... i am sorry i could not tell you in person, i wasn't ready... i mean, i am not ready... i know you have always been proud of me... and i wasn't sure how you would react, plus i know that people without much info about this... might feel a enormous fear. I wanted to avoid it, i am still the same, your younger brother...

I tried to explain my mother, why i am doing this, i am trying to let people see how this works from the other side. I might have never known all the things i know now, or i would have never ever appreciate how important to share this info is... if i wouldn't be in the position i am now. And i know none can understand me, but i want to open the door of my new world and let you see what it is in. It is not so bad.... it is hard, oh yeah it is... but it is not all because of the illness... it is mostly about you....the way you all deal with me, with us. That's what makes hiv people lives miserable. I am not used to be miserable eventhough i have faced very hard times in life, I am winner, even when i lose i always win. Plus many hiv people consider themselves "survivors" and i also hate that word, cause i have nothing to survive to...i didn't have a car accident, i am just ill. It is a serious illness but can be controlled. So i have no reasons to survive, because what i want.. is TO LIVE. I am a winner who is living its life to the fullest, that's what all hiv poz people are. Many people in the world chose suicide for smaller things than this, or feel miserable for stupid things of daily life, and some others just get depressed for whatever happens to them, but we are NOT like that. There are thousands, perhaps millions of us, who are living with hiv, who are fighters and winners... we defeat this illness everyday, we get over our fears at every step we do, we face our world despite how hard it is (and how scary it may look when we look at the mirror), we win to our fears daily and will win to your fears too, and we will defeat the unjust discrimination some of you and many others have toward us, because it is not just, it is not ethical, it is not justified, IT IS NOT HUMAN. We are winners and fighters and will always be. And even the moment i die, i will live again (because of my faith in God) and i will once again defeat the death. That's it, i don't like to be discriminated so when i got into this world, i said... i don't like how it looks like... so i decided to change it!!!. "Be the change you want to see in others"

I was telling my mother how wrong people perceive us, i told her "People think that anyone with hiv will die thin, miserable and in terrible conditions"... and i got shocked for what she told me "it's because that's the way they die...". And i got angry, pissed off, furious... how come?, i mean... .. hello? you are talking about ME!!! Why none thinks before speaking????(that's another way of discrimination). I was angry and i acted a bit aggressive and asked her not to say anything else. Her words put me down, i have the faith it all will be ok, but it seems she does not. I don't care if i am daydreaming thinking it all will be fine. I have faith (Faith is to hope for things which are not seen, but which are true (Heb. 11: 1; Alma 32: 21). I took some time, and then went to the table and talked to her, and said: "Look, i don't care what you believe or not about this illness, but i am fighting for my life and your words does not help me. I still believe that it is all going to be ok and i will fight for it, so please save your negative words or at least analyse them before speaking". She answered "i was not talking about you".

I didn't reply to that, cause i think she has not understood that it really is about me. If you say something about any hiv person in the world, it is about me too... because i feel same they do. We are close now, cause none else can understand us... and sometimes there is none else open to talk to us and to listen to us... you are all closed in your paradigms while we fight for our lives... and i hate that, also.. come on, lets be sincere, for you any hiv person is same as the other. Most of you are not seeing faces, nor realities, nor how smart these people can be, or how hard their lives are (something you might never imagine not even in your worst nightmares)... for you it is just another person with Hiv. For most of the world, any person with hiv is just... that... hiv, and that's wrong... we have to eliminate Hiv, not the people suffering of it... wake up!!.

We have feelings and faces and we support each other. There is a story behind all hiv faces on the world, sometimes stories are simple, someone careless, sometimes stories are hard... a poor mother and her children, but those stories cannot be seen as statistic numbers, because you stop being human if you do so.... are you a computer? don't you understand we live in the same world? and we need your help, as much as you need ours. Our help to teach you how to stop this fucking illness and how to re gain the sensibility of a real human being. What keep us alive to stay together while the rest of the world goes away... and i am open to change that, i want that what keep us alive is just to "stay together", wasn't it AIESEC all about that? no discrimination? black, whites, red haired, Muslims, Christians, catholic, Americans, Africans, Latins, HIV poz, HIV negs, people suffering with cancer, diabetes, and so on... It is all about it, and i believe we can make it true.

I have asked my mother to take time to talk to Claudia (psycho), i know it is not easy for her to understand all this, and she tries to be strong... and not talking to anyone, she refused meet Claudia for a 1 to 1 session, but i think she needs help to understand and assimilate what is happening to me, so she can really help me.... i know we all want to seem to be strong, but there are no heroes in a war like this one. There is no need of them.

I promise i will have a day without Hiv, some day....

Labels: New life, same illness

Hi, things are going sort of ok with me these days, not totally fine but i try to let things flow...

Banks are calling me for my debts, and eventhough Claudia (psycho) told me i cannot stress cause that pulls my cd4 down, i told her "I can't avoid it!! Banks call me everyday... i just can't stop thinking about it, i feel tired". And she said... "Those are God's twisted paths".

Not sure if you are familiar with that phrase, it means that sometimes God takes you to the right place... through the wrong paths (which are wrong in your point of view but are right in God's mind). So i am walking my long way home... might not be the shortest way, nor the easiest way, not even the most pleasant way... but it is the way i have to follow... and he made sure i can't step back... wherever i go.. i am still here, in this new world. Sometimes like today... i wish and desire not to have to walk this way and miss my past life, eventhough my current life is not that different... i felt different, and felt better. And i try to send this thoughts away very fast... cause it is useless to dream with something you won't have again.

So.. i was thinking today, that the effect of this illness in my life will actually follow the effect of the virus infection in my body. At beginning is a mess.. and it reaches high points and then it starts to go down and down until stable. Let's talk about "seroconversion". Sero what???? hehehe it was same thing i said. Once you are infected with hiv, your body takes times to realise the virus is present.... usually 3 months and in some cases 6 months. During those months virus is undetectable to any fast hiv test. The conversion or mostly known as seroconversion happens when the infected person with undetectable virus load... become hiv positive as a result of virus copies amount rises and rises inside of you. Seroconversion can't be planned, nor expected... time changes depending on every patient. Eventhough there are ways to try to prevent the Hiv infection after you have had a risky contact.

OK, i know you want to know this... If you are a person who thinks might be recently infected with the virus, there are some medicines (PEP - Post-exposure prophylaxis). I will post some things i found over internet:

"HIV PEP (post-exposure prophylaxis) is a combination of anti-HIV medications given to prevent HIV infection after potential exposure to the virus. HIV PEP has been recommended to prevent transmission of HIV following non-occupational sexual exposure (Centers for Disease Control and Prevention, 2005), but available research and guidelines to practically implement this recommendation are limited and have often been inconsistent." Women's college research institute

Other link Health 24 - Disease Prevention

Regarding Ecuador's situation there are few things to say about this. 1. Few people knows about this. 2. I am not sure if such medications are available for PEP. What do i mean? Well, guys... anti-Hiv medicines are very expensive, we are talking about 300 usd or 500 usd or even more per package of pills (30aprox). So.... it is not affordable. I know there are medicines available within government programmes, but i don't think they will give it to you for Pep (i know nothing about it.. to be sincere). Why do i think they will not? First medicine is expensive and is never enough for all patients, so they prefer to give it to someone who is really ill... than someone who might be or might not. Plus the only way to get this medicine from government is to join one of these Hiv programmes... and to join these programmes you have to test positive for Hiv twice (they made two tests on you). Until you finish those tests... it is already over a week after you exposition and PEP only works if it is given in the first 72 hours, and preferably in the first 24 (according to an American Dr i talked over internet). Still with it, if you think you might be recently exposed... don't believe in what i say about PeP, go and contact "Instituto de Higiene" (Government health institution in Ecuador) and talk to the counsellors, they are those who get you into the Hiv government programmes and they can tell you if help is possible or not. That's whole truth. Welcome to the third world.

Ok, back to the seroconversion... well it might lasts few days or a week, and it is not possible to stop it. Synthoms are same like aggressive flu, fever, headaches, sometimes vomits, diarreah and so on... during seroconversion number of copies of the virus becomes really high in your body and that causes all the illness, as you are not weak yet, your body recovers with help of few medicines and synthoms disappear. Viral copies go down, your CD4 rises and you keep on living normally.... except from the fact that since that moment you will test positive for HIV tests. It happens sometimes that people think it is only flu... without reason... and they don't get to learn it is seroconversion until their Cd4 is very low and opportunistic infections start to happen. In my case, it was almost like that... suddenly i got fever one night, and following day... then headache, then vomit and diarreah, then lost appetite, and throat infection..... and being a person who usually never gets sick i though "God... what's this? am i going to die?". As i knew i had been in risky situations... i decided to take the hiv tests after i felt a bit better... and now i am here. After stable period... that might last months or even years (in Ecuador an average of 5 years) person without medications start to suffer a low level of Cd4 and if you don't get medicines fast... you develop AIDS due to opportunistic infections in you .

I think Hiv illness will follow same process in my life, its impact will be high at the beginning and then i will start to get used to it, until it all feels more stable. Today i talked to a friend and asked him if my waiting time until my appointment with Dr (with Cd4 results) wasn't too long cause that appointment will be almost two months after my first diagnosis. I mean... i have had to wait TWO MONTHS to get to know how i really am... when in other countries you get CD4 and Viral load tests INMEDIATLY. He told me it was actually fine since i don't have troubles with health. I felt better. Today i also disclosed my status to a very good friend of mine... Diana Patricia, she is living right now in Germany working for Bayer Labs, and will be back to Ecuador a bit before mid of may (few days before my birthday!!). We haven't met online often... but it happened today and i knew i had to tell her, she is very important person in my group of friends. After my disclosure she remained silent... and then said "Oh my God!!" and i told her "that was exactly same i said". She managed it well, she is a well educated person and well... i hope our friendship will be same as usual.... and Diana.. once you come back, we have to go back to eat those tasty big hamburguers downtown!!!!!! Yummie Yummie!!!!

Well as for the rest of the day.. it was all fine. Work was fine, everything at home is fine and i am very optimistic about these days... i think and feel good things will happen (wasn't it time, huh??). Tomrrow we have to vote for some reforms in our constitution and to say true.... i don't give a shit about it. It is not politics what will make of this a better country, it is human behaviour, human sensibility, lot of work and the destruction of paradigms.

Last thing to say... is a request, it is a favour...pass the voice, don't let this info go to waste... speak about it, write about it, say something, do something. Also ask you all to please respect my privacy and save my name and identity. This is my life remember, not a movie on TV. This is important because, I am actually exposing myself too much doing this, i risk my work, my life and i risk to suffer the discrimination i am trying to fight. I want to help but i have no intention of becoming a martir nor a hero. I just want to be myself in a world where i can see less fears in others suffering with this, our inner doubts/devils are enough. I also want to live in a world where i am seeing as who i really am ...a human being, not like the worst thing on earth. I want to live in world with less Hiv. Help me, please.

Labels: New life, same illness

Today was another nice day,... hey this is going really cool!!. I went to deliver my samples in the morning early yet, and i had time enough to walk from hospital to metro station (about a kilometre) then went downtown to Alegro PCS headquarters for training and i arrived just on time. Perfect!!

Training was ok, we as sales people didn't really like the changes made to our current offers... but well... we are not at top of the Alegro PCS evolution chain... so lets just accept how things go. Then my co worker Rosa invited me to have lunch at her house (off course accepted i was almost broken), talked to her parents, watched some TV, it was nice. Then back to Work. It was a calmed day today, not much people... so we took chance to download some videos and make our own karaoke at the store. I love singing!!! It was a calmed day, i got a phone call from a good friend, it was nice.

I noticed something... can you believe that since i got ill... i haven't seen anyone else than my mother, co workers, my psychologist and a good friend also ill with hiv?. Looks like i really moved to another world, and my friends in town didn't move with me there... so, just in case.. if anyone reads this... i am still ALIVE, kicking and up for going out, a coffee would be so cool. I can pay mine so don't worry lol.

Talking seriously, i was thinking today about the changes... small changes i have made in my life, to help me to adapt to this. You might think they are silly but truth is... so far they are important to me. Take a look and i hope you like them.

1. I hate the word "positive". Yep, since the very first day i was diagnosed. I just can't stand it anymore... that word lost its good meaning for me. If you tell me nowadays "be positive" i will answer you... "i am already positive you know?" (black joke). Truth is whatever context you use that word, the only thing you are doing.. is to remind me i am ill. To remind me that i am HIV positive. So, now i prefer to use the word OPTIMISTIC. If you could use that one with me instead of the other, that would be a big help. I know it is something silly... but well... it would help me out.


2. I am on diet. Well this was not my decision, i am not good for diets but since my stomach is weak and sensible i was suggested to. So at this time i am not eating raw vegetables, nothing made of milk, try to avoid fat food, and try to avoid grains. Eventhough i have to admit i can't leave mayonnaise.. but i am trying!! Good news is that diarreah is gone... but it comes back from time to time. I think that it is only that my stomach is weak right now. That's all.


3. I have decided not to share drinks. Let me explain this, in Ecuador when you go to a party with friends, we usually share a single bottle of beer among all of us. That is actually safe guys, it is impossible to get infected with HIV that way, even if i share beer bottle with you, you are NOT in risk. Although I AM. If any of you has flu.... i will get it. Or whatever illness you have... i will catch it. Plus.. i was advised not to drink beer, not to smoke since i am under medications. Ohhh... so since now and on... i am a non alcoholic :) needles to say i already was, lol.


4. I am out of sex arena for a while. Let me also explain this... even after my diagnosis, i was told by DOCTORS i can keep on having sex if i want to, BUT i have to do it safely. And that means not only condoms usage, but some other safe measures i need to follow to protect myself and the person who is with me. More info here. Off course i understand this is a sensitive topic for everybody, because this is one of the few possible ways of infection. Still with it, there is too much shadow above this. Let me tell you that it is possible to have SAFE SEX with a hiv poz person without risk of being infected. Didn't know it? well now you do. Plus, you can also check Shawn's story, and Shawn's HIV Blog (he is such a funny guy!!!), also i know an Ecuadorian couple made by a hiv + woman married with a hiv - man, and they are so happy, it really happens around the world, it is time for you to open your eyes and your mind. I will explain more about safe sex later, now let me explain you why i am out of sex arena. After diagnosed i had three attempts of having sex, two of them were a disaster... not because of me, they were just the wrong people, so sex never happened. I had sex SAFELY with one person and it was nice, i liked it but not enjoyed it. why? well i was protected, but then i though... "if i would have done it like this before...." doesn't sound nice huh? and it does not feel that way... believe me. So when i am horny, right now i prefer to go for self satisfaction... if you know what i mean ;). A friend of mine told me he faced the same, and that after several months he felt ok to have safe intimacy with others... we'll see.

Now, lets talk about sex... i know that's all what you want to hear about, Lol!. The only sexual way to get infected with HIV is while practising UNSAFE SEX. It was my case, so i beg you to pay attention on this. I know we sometimes skip protection when we are with someone we love and all that... but you know, that person could love you... and still be infected, and not knowing it. And even if you both take tests, you should make several of them during a year or more to be really sure you both are clean. Plus... come on guys, lets be clear... fidelity in this world is almost death (and it wasn't hiv's fault!!), i know you could be really reliable, but are you 100% sure of your partner? current and past life? If you tell me you are 100% sure... i would advice you not to be. If i could have the chance... to go back in time... i would have never ever had unsafe sex with anyone in the world... NONE at all.

Something very important for everybody to know is that one of highest growing groups of infected people are housewives. They get infected by having unprotected sex with their husbands. Now you see what i mean?. Protect yourself, you can only be sure of yourself, don't be "sure" about others... don't do my mistake, please.

Well, I also need to have protected sex not only to prevent myself of infecting anyone else, but also because if i don't, i can catch any illness from the person i was having sex with. Lets say, if i had sex with person x and this person has ... Herpes or any other STD (sexual transmitted disease) i could get in big troubles, cause i am unable to fight it.

Mmmm i understand you all might have mixed feelings about this right now, so i prefer to tell you places where you can find more info.

• Aidsmap: Safe sex


• Poz Magazine: Positive sex


• Project inform: Safer sex guidelines

One thing important is, I don't need to tell anyone i am having sex with about my hiv status, it is not my obligation. Disclosure is my own right and i decide when to do it and when not to, but my personal commitment is not to infect anyone else. That's MY personal commitment, i can speak on my behalf, i can't speak on behalf of other hiv + people that i don't know. So don't expect that anyone comes to you and disclose right before jumping in bed... it does not happen. PRACTISE SAFE SEX ONLY!!!!

Plus, just let me clarify this... protection is EACH ONE OF US RESPONSIBILITY. The hiv + person is not responsible to protect you, got it??? so my dear friends, learn to be wise, to play safe and not to blame others for your own negligence and mistakes. IT IS YOUR OWN RESPONSIBILITY TO PROTECT YOURSELF. Got it? then record it and use it!! It will save your life. I swear.

well... 3am here, never though that talking about sex would take me so long. lol. Rest, don't be paranoid, it is just matter of being cautious. Open your mind to the truth, the truth that infected and non infected people can fall in love and live together and be happy, the truth that you can have SAFE sex with an infected person without risk, and the truth that YOU ARE THE ONLY RESPONSIBLE FOR YOUR OWN PROTECTION AND YOUR OWN DECISIONS. My advice.. safe sex is NOT optional, it is a must. Peace & Love.

Labels: New life, Personal, same illness

Calmed day today. Glad of it!!. Yesterday night i could not sleep much, got insomnia thinking about today's tests. I usually never had insomnia, but i have had it twice this week. I wasn't the only, Mother called me around 3.15am to wake me up (we had agreed it would be 4.30am). After her phone call i went to sleep and she called me again at 4.30am .... Damn!! fucking tests!!. I though... lets rest until 5am but i woke up at 6am. Oups... a bit late, so i prepare for the exams took the samples and went there. Luckily i am not far from hospital, something like 15 mins away. This is a pic of me before leaving.... and yes, i have gained weight, i gained 4 out of the 6 pounds i lost. Not too happy about it!

I arrived at hospital, searched the right door for taking the exams and i had to make a queue. There was a good number of people waiting to take all sort of exams, i was wondering how many of them would take hiv tests or more specifically CD4 test.

Ok, lets talk a bit about tests. As i assume you all know, HIV is an illness that destroy the defences in your body, in fact it is the only thing the illness does, and that means none dies because of Hiv or Aids. People die because of other illness, called "opportunistic infections". Those can be flu, tuberculosis, minor infections, and even cancer. Funny because i am not a risk for you but you are for me. I can't infect you with hiv while talking, but you could give me flu and if i am weak that could be very very risky. So i should be afraid of you, more than what you should be afraid of me.

One more point, to be HIV positive is not the same as having AIDS. Hiv positive (Hiv +/ Hiv Poz) is a person who is infected with the virus and might or might not show synthoms but his/her immune system is still fighting the infection. AIDS infected is a person who has Hiv virus in a very advanced level, with very low level of defences, it causes this person to show synthoms or being affected by two or three or more opportunistic infections. Once again, all this can be prevented and even solved with medicines.

So back to the tests, as it is my first time i was requested all the normal tests, blood, fecal, pee (sorry but i am not good yet in medical terms in English). Plus there are two specific tests that HIV poz need:

• CD4 Test: CD4 or T cells are part of our defencive system, they are those mainly affected by HIV virus by reducing its number. CD4 cells are supposed to be reproduced in high amounts when an infection attacks our body, when Hiv virus attacks us, he modifies our cell's ADN so instead of producing CD4 cells our body start to produce fully functional copies of Hiv virus. Minimum level of CD4 in a person is 350. This tests counts the number of CD4 cells in blood.


• Viral Load Test: Same like the previous one, this tests count the number of copies of Hiv virus in our blood. The higher the number, the worst condition you are (weaker). There are some times when your viral load remains undetectable, that does not mean you are totally healthy, it just means copies of the virus are so few that they can't be counted. This state is usually caused by medicines, but if you stop medicines once you are undetectable... they start to reproduce again and with resistance to the medicines you were taking.

Both tests are actually very expensive here in Ecuador and they are mostly non covered by government programmes. A person should pay around 200 usd to get both tests done once. Luckily social security services cover the costs of CD4 tests, which is at least useful for a first diagnostic. In other countries both tests are supposed to be taken every 3 months at least... here in Ecuador due to the costs, people take them twice per year (in good cases). It opens a big windown for the virus to expand, this is not a problem if you are on meds, cause your virus is under control... but for guys like me... well... i risk of not knowing what is going on inside. That's why Drs watch your synthoms for some time and then they sort of calculate when you should start taking meds.

Well, today while making the queue i was wondering how many people there could be suffering what i suffer. A Dr came and was checking all of our exams and they said, yes you can take this test now, there are not reactives for these tests and then... he suddenly said loudly to a black woman: "You are going to take CD4 test, right now we are unable to do it cause the don't have reactives, you can take all the others but about this one you have to go to talk with Dr Villao". I was afraid and ashamed... you know he said it loud!!! Come on, Drs should be more discreet!!. Then i though...mmmm... well most of these people might not know what is CD4 tests anyways so it is not such a big deal, when my turn came.... i must have had such a face of terror that he behave nicely with me. ufff!!! what a luck!!!

I watched this woman (pic)... and i felt identified, i wanted to talk to her and say: "Hey you know, i also have hiv, it all will be ok!!". Although during my first week i realised that many hiv poz people don't like to talk about it, they are so afraid, and society has made them feel ashamed of its illness and about themselves that they really want to hide it, the fear is so much that some of them might react aggressively if you ask them about it. Plus i am not good in approaching people i don't know... i am mostly shy.
I also had other questions, i mean i need this CD4, what do they mean when they say there is no reactives? and if i die? and who is Dr Villao by the way?.

After the first check in, we went into another room, where you waited until they called your name to take the tests. Then shit happened. They didn't accept my fecal sample for the fecal test. Oh Holy Shit!!!. They said that for a coprocultive (whatever it is) i have to bring it in a bigger recipient and bla bla bla, so i have to shit for them again tomorrow morning. :(. After that there was a place next to this woman i had mentioned previously... and i was afraid to talk to her... she had strong gestures in face... the face that someone who wants to protect herself. I took a seat and said:

• Me: Hi, can i ask you something?


• Woman: what? (looking at me confused)


• Me: Well, i have to take this test (and showed the order) and they say there are no reactives... so... what does it mean? what do we do? have you taken the test before? how is it? this is my first time. (Looking nervous)


• Woman: If they don't have it, you have to go to talk to Dr Villao, don't you know her?


• Me: ... actually no, it is my first time... where can i find her? where should i go? will she take the tests to me?


• Woman: she is in the other side of the building, at emergency lab. After finishing here, you go there and talk to her, she will tell you when you can take the test.

That was all we talked, and i felt better and i think she also was... she was not alone in the world anymore. I understand her, and well.. her experience helped me to understand how this works in this hospital. She was called to take her exams and when she was leaving she told me "hey, they don't have reactives, don't forget to go to the other side of the building and talk to the Dr". I thanked her.

There were two things i hated in the room where i was waiting. First, there was this poster of Hiv prevention and none ever put attention to it. I wanted to say.. hello.. hello... read this!! it is important!!! And the other thing i hated was something written in computer in the wall just in front of the poster and next to me.

"Remember!!! To die because of Aids is inevitable. Does not matter the privileges you have, nor how goods your Drs may be. There's no cure."

I said....BULLSHIT!!, and though that people who are not ill are always so "motivational" about Hiv, specially because they DON'T KNOW a single thing of what we are living. This is what i call discrimination as well, first that announcement is not based on scientific facts, at least not totally. Second, it is a way to intimidate us, we, who already carry this heavy weight. I don't need more fear... I HAVE ENOUGH!! Believe me.. Also this announcement just reinforces the fear around an illness that can't be ignored as much as it cannot be cured. I hope, there will be the day when talking about Hiv will be like talking about diabetes and that people will take periodical tests in order to ensure they are ok. That will save lot of lives... and in the mean time... break those fucking stupid paradigms you all have!!.

Well, after exams i went to check out if there was material for x-rays... nothing. I was missing a medicine from my prescription so i went there, nothing as well. Went to the Dr Villao office, she was a nice woman... with flu. Silly as it sounds.... but i got scared. Funny cause i don't think i am that bad with my CD4, but those are the ways our mind fails us sometimes. She noticed so she kept distance and told me that i might be able to take the test NEXT THURSDAY. I told her my appointment with Dr was next TUESDAY and that i needed the CD 4 test, she said "you have to change appointment date". Oh ok. After all it is useless to have appointment without CD4, Dr won't know a thing about my state.

Went to Drs office... and... OH SHIT, WHAT A HELL!!!. I saw someone i knew. I mean.. it was not like the previous time.. this time i really knew this guy, i met him in a disco some time ago, and he is great guy, friendly, funny, and you know the type of guys that all girls find handsome. I could not manage it as he saw me approaching so i simulated i was talking over phone and haven't seen him... and didn't stop at my Drs office (as usual...) but kept walking. Damn... i was afraid. I know he might be also ill, but if not? and if he realises i am and he start to gossips about me with others? :(( yep, i have enough fears in me. I talked with the pretty but silly psychologist that works with Dr over phone and asked her to help me to change appointment. She said she would, and i could actually leave.... in fact i was near the door.... but i came back... and looked at this guy from distance... and wanted to talk to him, to say... "hey you know, it is ok to see you here, i also have hiv. We'll be ok!!".... but i was afraid. I walked again toward Dr office.. and again i didn't stop there but kept walking. Then turned around and said... ok, lets talk. I approached him.

• Me: hey, how are you? long time without seeing you!


• He: Hey, that's right, it's been long time. How you doing? have you been to discos lately?


• Me: i am alright, everything's ok. I haven't been anywhere since some time ago.


• He: Why? because of work or because of health?


• Me: well... i guess because of both. mmm are you also meeting Dr Heredia?


• He: yes and you too?


• Me: well, yes. I had my first appointment last week. I am newbie.


• He: oh really, that's fine. it is all going to be ok (smiled)


• Me: yeah, i hope so. You know... i am still nervous and it's been hard for me.


• He: i know... believe me i know, it is always hard for all of us.

And we started talking, he gave me some advice on how to prevent myself from the lack of medicines at hospital. I told him a bit about my last meeting with Dr and how i almost die there, he laughed. I felt fine, i wasn't much of a friend of this guy.... but same as with the woman, it feels ok to know you are not alone. It is a pity that they are all ill with this, but still... they are teaching me how to handle it and i hope i can be a source of motivation for them. This guy told me:

• He: look at me, how long do you think i have been with it?


• Me: mmmm ... i don't know... how long?


• He: ten years


• Me: wow... but man you look so well!!

And it is true, when i met him last year he said he was 41 or 42 but he looks like 33 or 35. Plus, i would have never ever though he would be Hiv Poz. We talked a bit more, he told me his perspective about the medicines, and the treatment, and about my wishes to lose weight. I would say he was a bit old minded.... you know... and perhaps he was a bit more on the negative side of things. Or... perhaps he was more realistic than what i am right now. I don't know... i have good expectations for my life and my relationship with Hiv (to call it in some way), and i want to keep it that way. If i am blessed enough i might not have so much troubles. It was fun to talk to him and we exchanged phone numbers, he said "I'm going to be there to help you if you need it". And that meant a lot.

Talked to Dr, she asked me "you are not on meds right?" I answered "nope, i just had my first appointment last week, i am just taking medicines for infection". She moved my appointment, from April 17th to May 8th. To me it is a long time... long long, (she wanted to put it even farther), but as she didn't prescribed me anything else, i think she does trust my CD4 as much as i trust them. When i finish with my current prescription, i only have to keep with some antibiotic pills until the appointment. I was explained by the guy i met that they prescribe these medicines while you are healthy in order to prevent you from any infection, specially if they don't know your CD4 numbers.

So that was my day, then i had meeting at work, then went home to sleep and listen to music for the rest of the day. Mom took my older niece to Dr and she might need a minor surgery. Pity, she is not even 10 years old. Although i know she will be ok. Had dinner, and i have to sleep early (it is 2am already) cause tomorrow i have to do the fecal test 6am and then i have training sessions at Alegro Pcs headquarters from 9 to 11am, then work at 1pm until 9pm. That's it.

What i learnt?... one should never be afraid to open yourself to others, because those others by helping you... might be helping themselves. I know the guy and the woman i met today... saw in me their reflection from their first times... and they related to what i feel, and helped me... and i think that also helped them to cure their hearts, they are giving a hand when perhaps they found none... and that makes them better people today and heal at least part of the suffering the might have had....today they had to choose what to do... and they chosen to make a better world.....and thats enough to be sure they deserve to keep on living a good life. It is nice to meet wonderful people everyday. When i was healthy... there were days when i found none to help me... and now that i am weaker, other weak hands made my day. Thank you!.

Labels: New life, same illness, Scientific

Today i had a nice chat with Claudia (my psychologist). I went there with Mom, it was cool. She gave us lot of scientific information about the illness, that normally patients don't get but she did it cause she though we were prepared to analyse it (Off course, my family has always been brilliant!! Lol). It was so interesting... and scary. She explained me the four levels that Dr mentioned and all that... when we just started with it... i felt i wanted to vomit....luckily a glass of water helped me.

She told me that diarreah for long time, is a serious synthom but... it is not the only thing Dr will look at before starting with meds. There is a whole matrix showing many things. It all will depend on my tests of tomorrow. If tests go wrong, i will start with medicines inmediatly even if i feel as fresh as a carrot. I also got some other answers regarding medicines. So far... life expectancy for people with my illness is around 20 years (afer starting with medicines).... it can be a bit more. That's statistics until last year. After those 20 years the illness becomes resistant to all the medicines developed so far and well... you know what comes next. The good thing is that almost every 1 or 2 years approximately there are new medicines on market that expand life expectancy for people with my condition, so... eventhough i am given a maximum of 20 years of life expectancy right now, it might be that with new medicines i could live even longer. She told me that medicines are so powerful that even if i hit worst conditions, medicines can take me out from there... but the most important, being medicine available there is no reason why people should suffer as much as it is seen on TV, that's just lot of black marketing and not much of responsible education. Once i start with medicines i cannot stop them... and i have to be very strict with schedules cause Stichito mutates very fast (funny... i got a smart illness as well..). Regarding side effects she told me that approx 25% of patients suffer side effects it all depends on every patient and she added: "if you keep on thinking about worst conditions... you will have them, so stop with it!".

Truth, we were talking and she told me i am starting to develop a case of clinical anxiety, which is normal in these cases but that i have to fight. "Dr is in charge of keeping your body up, i am working in keeping your emotions up, but you have to work in keeping all yourself up, otherwise you are playing against you and us" - She said. Then she showed up a short movie about an Argentinian guy, who was also diagnosed same way as i did. It was actually quite funny, he felt sick for everything, and even Drs told him he was right, he always though "they are lying, they are not brave to tell me i will die". There was a phrase that touched me in the video:

• Dr says: Mr Marketo, you are overreacting and exaggerating don't you think?


• Guy answers: Perhaps, but I've got HIV you know? it is not flu!!


• Dr says: Ok but you know, to die is not so easy!!!

I felt identified with the words of this guy but Dr's answer stayed in my mind. To die is not so easy. That's actually true. In the video, Dr dies before this guy, Dr had a car crash... and it was then this guy understood. "To die is not so easy". And started to make a list of many things he wanted to do in his life, sky diving, surfing, parachuting, go fishing with Dad, learning to dance Lambada, Lol. that was so funny.

In Argentina and in many other's part of the world this illness is not considered as the worst in life. It has became an illness you can live with. It is still a serious illness that you all should avoid, but if you get it, there is no reason to lose the hope. The hardest part about this is the stigma present in our countries. I am sure many of you feel afraid, shocked, surprised with my disclosure, and perhaps feel sorry... Although i am and i will be OK. This is like Cancer, you have to deal with it, the only point is... if you could prevent Cancer wouldn't you do it?. Off course yes. Same thing with HIV. I mention this because only this week i met in my city 2 girls and a guy who are having sex without condoms. I made numbers and i got afraid. I am talking about university students, well educated people with good jobs... and they haven't even though in taking HIV test. It was my case you know, i always though i was not even near to a group of risk...i was wrong. Think about it.

When i joint AIESEC i was told we could change the world... and that we could be Change agents. So i am and i believe in it. This could happen to anyone if you guys are not careful, so please pay attention. I believe now, this virus is growing so fast because we never really talk about it, we have lost sensibility to the messages around us and we are all so afraid that prefer to avoid the topic. That's not the answer, the virus is still there, perhaps if i would have talked about it more, i would have been able to avoid it. Some stories i read says that it is important that HIV + (HIV poz) people become more visible, for two reasons:

1. To show others.. this really happens to anyone and they must be careful.


2. To show others ... there is no reason for discrimination, we are human beings, not demons.

This is me, the JuanCa you all knew since 1998 when i joint AIESEC, not sure if that means something for some of you, but i hope so. I am a normal human being and now i am HIV + (HIV poz)... and i don't need to be discriminated when i worked against that during 5 in this organisation!!. I used to say One by one We eXchange people, One by one we make a better world. And happily i think i am still making a better world with this i am doing right now.

If you got to read this... now you know my recent biggest secret... and the only thing i hope is that you deal with it as a friend, not like a journalist willing to spread this as the hottest news around the city/world. This is my life, not the news reports at 8pm. Also if you are a change agent i hope you have learnt to respects others privacy (plus my mother is a lawyer and you could get in troubles, lol). No gossips please, OK? if you have questions, feel free to ask me. Don't need to tell to anyone else, it is My Right to talk about it when i feel like doing it and to whom i feel like doing it. Got it?

Ok, this is my new journey. This is what blows my mind since a month ago... and slowly, i am feeling OK with it. I have talked to many different people, read other's stories... and i have found out so many valuable people... who suffer, not because of the illness (that part is the easiest to control with medicines) but because of being badly threated, margined, fired, insulted... it is so stupid that the world instead of giving a hand, would kick them, better say kick us out. So far i have told my diagnosis to 6 people who are not ill with this, from those only two people took it wrong. One person reacted really bad and other said he was understanding... but ended up leaving me alone. To me it is ok, the person who loves me the most in this world (my mother) is with me, and she is my team member. If the rest of my friends want to stay with me like real friends without judging me or being afraid of me, then great. if not... doors are always open guys, you don't need to be near if you don't want to.

There are some stories i would like you to read... they have given me the power to explain what i am explaining to you now. Truth to be told by Regan Hoffman, Ann's HIV Blog, Marvelyn's HIV Blog. They are definitely worth reading.

Claudia told me that as this is overwhelming to me yet i might need support while visiting Dr to avoid being in shock. So for next appointment my mother will be with me... well... it will feel like going to an appointment with mom next to you... :(( i will look so silly, but i know i need it. As for the rest, i have decided to stop reading scientific things, i can't digest all right now. And have preferred to focus on LIVING MY PRESENT, cause that's what matters.

Spent the rest of the afternoon at my sister's house, playing with my nieces and sleeping. Now my body feels a bit more tired as part of what i am living. It is ok, it is always good to be in bed. Tomorrow i will have to wake up 5am to take the other tests at Social Security Hospital (i still don't understand why if i am ill i have to wake up so early...damn!). Expect some pics tomorrow ;)

That's it, got to go now. Xyahka

Labels: New life, same illness

Today was a normal day, not much emotions and that was nice. I need to have more of this type of days. Good news, one of the two troubles i had at work got solved today (the easiest one) about the other... none said a word today... so i guess the discussion reached higher levels in the Alegro PCS evolution chain.

During morning i went to do my first test prescribed by Dr in a particular hospital, then went to social security hospital cause i needed to get some x-rays done....i was received with this news: "There's no material, call after few days to see IF we have it". Nothing else i can do i guess. Luckily i am healhty. Yep, i am a fortunate guy.

Went back Home with Mom and were talking a lot, she took the chance to ask me some questions about my illness, and we had a great time, plus she made lunch
for me..mmmm!!!! tasty!!!!!! Then headed to work. There was some minor problem about eating at working place.... so we'll have a meeting on thursday morning, that's fine.. i mean there are bigger things in life to worry about, the only thing is that it crosses with my schedule for exams prescribed by Dr, but i hope i will manage to get everything done before the meeting.

It was not easy to say all the things i posted yesterday night, it was very personal. At first I felt ashamed.... i didn't even want to read my blog. Although now i am glad i post it, i feel free. You know shame does not serve me at all... now that i know i might leave you, i guess it makes sense to speak out my mind before i go.. I want to be totally myself and not to fear what others may think, after all... this is MY life.

For the rest of afternoon, I was looking for some info about eating healthy, and found some interesting info on internet, also about illness related with loosing weight. Something remarkable i have found about the people with my same illnes is that they develop such a wide and deep knowledge about all sort of additional illnes that
might affect them, also about medicins to threat them. Sometimes they become as good as pharmacist. Today i was reading a bit and found out i know nothing about cells, proteins, inhibitors, glucose, and much more. mmm... looks like there lot to read about. A LOT. Knowledge is power they say. I want to have power too.

Tomorrow i have appointment with my psychologist together with my mom. I have to admit these meetings are helping me out to deal with this. I want to talk to Claudia (Psycologist) about the way i am dealing with this, the empty feeling inside, the feeling of having lost myself and some other stuff. I am making team with my mother to face this, she is always there supporting me... despite the fights, love is always there. And...like Lilo said: "Ohana means family, and family means nobody gets left behind. Or forgotten" (Lilo & Stich). And that's so true... and i thank God for it.

Plus, i have been thinking i need to re-formulate my goals for this year.. due to the obvious changes. So i checked them up and reorganised them this way:

1. Finish the year healthy and without medicins.Totally possible.


2. Talk a bit more with my mother and make sure she is happy. That's actually happening and i like it. Since she knows i am sick we talk about 5 or 6 times per
   day. I am sad i gave her such a bad news about my health... but i can still make her happy and proud of me.


3. Get rid of debts with my credit cards. Top priority.


4. Become Administrator or any higher responsibility within Alegro PCS. Or.. find a part time job as soon as i can.


5. Finish the year with 70kg. That's funny cause despite of my illness i am still 78kg aprox. I still want to lose weight, but i have heard i must be carefull,
   if i don't control myself and go hand to hand with Dr. i might get very weak and thin. As for now, i will start with few exercises at home.


6. Wake up early everyday 7am and do exercises 5 days a week. Mmm... let's change that... i need to rest so lets say 9am 2 days a week (until i find the part time
   job)


7. To live by myself (or with someone else) by the end of the year. This is still possible....mmmm... but i am not sure if i am that interested in it right now. I need to get used to what is happening to me, and i might need help. Right now i live alone at Mother's House and sometimes i feel too lonely (specially after diagnosed) other days i feel i need some silent time with myself only. I'll see.


8. Finish the year with 1000 usd of saving in my bank accounts. I will feel myself ok if i get rid of debts.


9. Go back to University. I guess this will have to wait.

So... with this adjustment, lets see what else is 2007 going to bring. I remember that by the beginning of the year i said this would be a hard year... never knew how right i was.... next time i will shut my big mouth off ;).

I love calmed days, like today, when nothing happens, and you don't need to react, nor to protect yourself against anything/anyone, these calm days... are to be enjoyed... because they just let you BE.

Labels: New life, same illness

Hi, today talking to Max, from Quito, i was telling about my recent facts and he told me these words in latin "Noli me tangere" he said it meant "Don't let anything touch me" I found a slightly different meaning in Wikipedia "Don't touch me" eventhough can be used same way. This phrase was taken from Bible (John 20:17). There are several reasons why this phrase made its way until my blog today... some reasons you don't know but that are part of the puzzle (my life) that i am trying to re make right now.

None of you know, but before making my way to a non curable illness... i was struggling financially and had troubles paying my debts. How come? well, until last May i used to have two jobs and was making around 700 usd monthly working 8h 7 days a week. Then i was fired from one job and stayed with the one i have. Income fallen from 700 usd to 180 usd. The problem is that i am paying some stuff i bought while i had a good income. I didn't look for another job inmediatly cause i was tired... over a year with two jobs every single day (even holidays and weekends) it is somehow too much, and i though i could make it with the one job i had. I know i was wrong, you don't need to tell me.

So... the situation before my illness was.... i have debts over 2.600 USD with almost all my credit cards and the company where i bought my laptop. Plus as i am living alone i have to pay electricity, water, phone and all that on monthly basis. It means that i would need to pay around 500 to 600 usd monthly, when my salary is 180 usd after taxes. Oh yeah... when i said struggling i meant it. For several reasons (that i don't remember right now) i haven't been able to pay my credit cards since December 06, that was a problem... they call me all the time... same with the computer, and by beginning of March (few days before of me getting sick) i got water cut at home... and still is. Yes.. i have no water at home at this moment. My mother sometimes ask neighbors to give us some. As i spend most of my time out home i don't feel it much.

I remember myself asking God some help, i dislike having debts and it bothers me... and then... certain comet hit me. I didn't see it coming. I got diagnosed with this non curable illness. I was saying to Irina i had been hit lot lately, well... this is the whole picture.... when i said i had been hit a lot, i meant it. After the two tests and two shocks my diagnosis got confirmed, found my way to see Dr and i got this "level 3 or 4" classification that puts closer to heaven (Lol). Then i had a nice weekend, i though.. that's all... i have my big debts, my big illness, my big diagnosis... nothing else could be bad!.... but i was wrong.

Today i had two troubles at work. Somehow big. By 06/03/07 (a day before getting ill) I had some client renewing his contract with my company, he wanted to apply to some promotion, so i called our call center to make sure if he could apply and if promotion was still available. I was said yes to both questions.... but since last week i am involved in a internal discussion, cause the supervisors now say the info was wrong and this client didn't apply for the promotion. That is actually not a big problem, except from the fact that with the promotion this client got a discount of over 100 usd. Supervisor's head told me today: "I am sorry we cannot assume such a loss, it is too much money... we have to get it from somewhere". And that somewhere... might mean... my already weak pocket. Then i had another client with another problem, but i think that one is easier to solve (if they don't discover this client also applied to that promotion that now they say it is wrong). That means i didn't do it wrong by intention. I was told several times these clients applied for the promotion... and none said a word, until last week. Off course i cannot use that in my defense cause i risk that all those contracts might be broken and i would have to pay 100 usd per each one of them. Silly isn't it? So i just have my word to fight and I have my fingers so crossed.

Today i told the story to one of my good friends and he said "you know.. i don't know what to tell you... i know it is all falling on you at the same time...i just don't know what to say". I have been told not to stress cause it is not good for my health.... but i have had such headaches today.... for instance i felt my head would fall on the floor. The back part of my neck is in such a pain. I ate 2 hamburguers (which i actually should not) and felt a bit better. I feel there is no rest for me now... feels like God is making a strenght test on me... wish He would stop it..... I am thinking in having another job again... but i have to stablish with my visits to Dr and my illness cause i can't get a new job and ask for permission to visit Dr too often... plus, with my illness i am suggested to rest more... ha ha... to rest more, is it a joke?

Then i looked at my whole picture... oh God... it is like hell.... and the funny part is that it makes me laugh... i mean...i can't imagine not even in my dreams someone with so many problems like i have right now. I mean not even in movies... that's funny you know? sometimes i laugh and say to myself.. "God must be crazy!!!" with respect off course. Only in his mind this situation could be possible.... and still i wonder.... Man (God), how come do you let this illness fall on me when i am already in troubles?? I mean i could have been ill of this anytime... but why now? why all together? haven't you realised it is too heavey weight on a simple human's being?... and i have no answer... or sometimes yes, sometimes he gives me hints on how to go through it. Like today.

These are the reasons why i am weak and tired (and perhaps negative) these days... it is not only the illness itself which is already a big problem... it is all the others things as well. I want to point something..I AM NOT ASKING FOR ANY FINANCIAL HELP NOR ANY KIND OF MONEY. Have it clear. So please don't dare to make such offer. I just wanted to share the whole picture of this new world with you those who care about me, so you can best understand me. I am not requesting pity, no sorry feelings, nor pobrecito (poor guy) thoughs. This is just me, how my life is going and the test that has been put in front of me.... the whole truth. I decided that Noli me tangere would be my phrase today... cause i won't let any of these things touch me, nor touch my heart. They said "God never gives you more than what you can stand". I have been standing these troubles since December.... on March they got really worst... and today... there was just one more rock put on my already heavy weight.... but i don't tremble, sometimes i seem to be falling... sometimes. Sometimes it is tiring... but i am not totally weak at all. Cause someone prevents me to fall completely.... i never knew i would be so strong... and it is because i am not that strong, that's the truth. There's someone else helping me from above and he carries my heavy weight when i need to rest.... like right now and when i need a hand... he gives me two plus a word of encouragement, and rises me. Like today, like right now. Noli me tangere tonight.

Labels: New life, same illness, Spiritual

Aha, i had a better day today :) and... got a haircut!! To say true i was trying to get one since some time ago... and i just could not find time. Thanks to easter i did it. I got my hair very short... There is no special reason for it, i just wanted to have it that way. Perhaps as a way of showing how rebel i am with everything that is happening right now. Here my just taken pics.

This is the face of the new me.

Today i assimilated one more thing about my new life, I will have to go through it alone. I mean there are people always around who gives you a word of encouragement like you all, and who try to be with you when they can... but true is that at the end of the day... in this new world... is just Myself against Stichito.

And i also understand that being with me while i am ok, it is nice. It is normal, but when (or if) things get harder... some people might not want to be there. We all have our own problems, and own challenges, it would be stupid and naif from me to expect there would be someone willing to share this heavy weight with me. Plus.. this is a lesson for me, a test i have to approve. In my new world, there are some people that loves me... but cannot totally understand me, none can put themselves on my feet, others that understand me and respect me but don't want to get involve in all that is happening to me right now, they like to be in a the easy place of this new story. Like the friend who told me today... "I understand you... but i don't want to get involved in it". At first i could not believe it and it hurt... i considered him my best friend in this moment. He is also ill. Then i understood he might be too busy with his own problems to have time for mines.... and thats ok. Perhaps it is better this way.

I want to tell you a secret... i fear death. Not my death... but the death of others around me. It is not because i have this illness, i have been afraid of this since long long long time ago. I am afraid one day in my life i will wake up and that all my friends will be gone... to a better place, and that all that i will have in my heart would be just remembrances. Not being able to talk to my mother when i need her, realising all the meaningful people in my world are not there anymore. That would be a hard thing to accept and to deal with. Now.. i understand this might not happen, cause i could still leave this world before you (feels I've got a ticked booked already Lol) but still there is the chance that i can last long enough to see some of you part. That would be too hard for me.

Strange thoughts, i guess. Most of you don't think about death... or prefer not to, cause it is something none knows when it will come.... it seems to be so far away. Although for me, Death is a reality in my new world and i am afraid (and Dr didn't help).

But i am starting to try to go day by day... so... current situation analysis is: I lost almost everything i had. Although i have some things: The inner me and my health... for the time it lasts. I have these two tools against Stichito and i will use them. So current strategy is: The inner myself will rebuild my world and find ways to maintain or increase my good health. My health will help the inner myself to reach this goal. That's what is planned at this moment, if something fails... i will make a decision when it happens.

Today was a good day, stayed home with Mom, getting along better. She made nice food for me, Fish!! I loved it. Talked to my friends at work and a friend of us is just pregnant, thats nice... she was not expecting it... so i had to give her some words of encouragement (oh yeah... can you believe it?). While doing it, i tried not to just say words.. but to look inside myself some inner force to share with her... and i found few, and i shared it and it felt ok. There are some gifts God gives us when we less expect them... she might feel lost like me, off course different reasons but still a big change in life... change your world and freak you out. Then watching TV and i saw a strange movie "Being John Malkovich". Have you seen it?

Being John Malkovich is about some guy that finds a secret portal that takes him inside the mind of someone else (this case John Malkovich). At first i didn't understand it, but as i have heard about the movie before i decided to keep on watching... it was weird movie, but at the end... i understood something. I am John Malkovich. I mean... the story, is somehow like what i am feeling, i took the portal and now i am inside someone else. It is my same body but it is someone else cause it is not the old healthy Juanca i always knew i had.. and that i though always would be with me... but right now.. he is not, he is gone.

You know... now that i reflect... i saw same topic twice today. Today in the afternoon i saw a TV serie about travelling back in the past and this guy had to go to the past to save Pope from being killed. The trouble was that when he arrived to the past, he found himself inside Pope's body. I laugh right now.... i didn't relate that TV serie with what is happening to me now... so God found out the way to deliver me the message a second time today, until i finally got it. I am sorry for being so short in view Lord. I also saw a movie about Spartacus and how he fought to live free, he learnt that live means nothing if you don't fight for it. I almost miss the message sent from above to me today.... Lord, thanks for keeping on talking to me everyday... sometimes i walk going to my work and i hear songs playing loud, Gospels saying "He will give you peace in the middle of the storm". And i thank Him (God) cause i know and believe that in life everything happens for a reason. And believe me, God do talk to us everyday, are you open to listen to Him?

So, my advice... never take yourself for granted. Worry a bit about yourself, your health, your body, your life and others around you. But please do it now...I am serious in this, I beg you... DO IT TODAY.....life changes too fast and unexpectedly, believe me... look at myself and listen to me. Cause one day... all from sudden life changes and there is no warning about it. Suddenly it all turns upside down... but if you are conscious of what you have and who you are right now... and enjoy it, that will help you not to miss (much) the things you might lose when the time arrives. Seems like i am learning about myself... oh wow... i am evolving!! Lol. Irina left me a word in my mind for this holiday... resurrection. RESURRECTION. That's a nice word.... i will meditate about its meaning tomorrow. I want to resurrect my world.

Mother invited me to go out tomorrow, looks like my uncle will go to a swimming pool... i am actually not in mood for going out, not much reasons to be happy and celebrate lately... but i think i might go with them. I have been closed in my small new world and my house too much lately. Let's see what's outside there!!

Labels: New life, same illness

There are few days like today... when i lose the hope.

When i feel the dark coulds of the storm cover my beloved shinning full moon... and i feel lost one more time, and alone.

The worst is to feel alone and when you feel things are not going right as you expected.

Today i argued with my mother, that's actually normal for me... we have always done the same (too many different opinions, just that)... but it hit her deep. She went outside our balcony to stay alone... i knew i might have hurt her, or perhaps she felt guilty, thinking that as i am sick, arguing with me could get me worst. Eventhough it does not work that way... it actually made me feel alive, cause i know she loves me but we just have too many different ideas about live. Even psychologist noticed so.

I went there and tried to talk to her and explained her thar arguing is ok, it keeps me alive in a "normal" world, as it used to be..... but she is not easy in deliver forgiveness... that's something i never liked from her. So she start saying things like she didn't come to visit me because i am sick but because this is her house. Also... i asked her to take off some stuff that is right in the middle of my house.. i tried to clean some space where i could at least feel my world was getting clean and in order and now... it is a mess again and crowded with packages and other stuff... and i asked her to move it, i want free space... that bunch of useless things bother me, i don't feel ok living in such a mess (eventhough my house has always being like it). And she said she won't. We said many other things...and then i prefered to leave.... and i feel sad now and lonely. Cause nobody understand me. I feel so fucking lost and alone in this mother fucked new world. And i wanted to sing this to you all who has gave a hand or a word in this during these days....

Title: Tomorrow
Artist: Avril Lavigne

And I wanna believe you,
When you tell me that it'll be ok,
Yeah I try to believe you,
But I don't

When you say that it's gonna be,
It always turns out to be a different way,
I try to believe you,
Not today, today, today, today, today...

[Chorus:]

I don't know how I'll feel,
tomorrow, tomorrow,
I don't know what to say,
tomorrow, tomorrow
Is a different day

It's always been up to you,
It's turning around,
It's up to me,
I'm gonna do what I have to do,
just don't

Gimme a little time,
Leave me alone a little while,
Maybe it's not too late,
not today, today, today, today, today...

[Chorus:]

I don't know how I'll feel,
tomorrow, tomorrow,
I don't know what to say,
tomorrow, tomorrow
Is a different day

Hey yeah yeah, hey yeah yeah, and I know I'm not ready,
Hey yeah yeah, hey yeah yeah, maybe tomorrow

Hey yeah yeah, hey yeah yeah, and I know I'm not ready,
Hey yeah yeah, hey yeah yeah, maybe tomorrow

And I wanna believe you,
When you tell me that it'll be ok,
Yeah I try to believe you,
Not today, today, today, today, today...

Tomorrow it may change [4x]

Sorry guys, i try to believe you when you say that it all will be ok. I try to believe you, but sometimes i don't. And sometimes i fear the death. And right now it is so important that everything goes ok... but it does not happen.... not today. So i prefer to think that tomorrow it may change....tomorrow is a different day. I am still ok.

Labels: New life

Hi, meeting my Dr yesterday was not what i expected....

First i had to go to the other side of the city to pick up the last document i needed in order to present to social security and get the appointment. Done. Arrived to the Hospital around midday.

Went to look for Dr's office... and then... damn... some people i know. What a Hell!!!. I actually didn't know the couple of people who were seating in the waiting room of my Dr but i know i have seen the once or twice somewhere... they looked at me approaching and openned their eyes wide open.... oh yeah.... that wasn't nice. So i didn't stop in my Dr office but kept walking.

I know it is silly but i don't like people staring at me... come on.... give me a break!. I called a friend from the foundation i am attending and she called the psychologist that works with the Dr so she would meet me outisde in the area next to the Dr's office. When i saw her.. i though... nice woman, pretty... but very young... then, while she was still standing in the waiting room of my Dr's office she saw me... and SCREAMED: "Juan Carlos!!! Juan Carlos!!!". And i changed my mind.....fucking bitch!

She came closer and was still screaming my name so, i had to tell her: could you please stop saying my name so loud? As i talked to her, and perhaps due to the first impression....i disliked her. I mean she is pretty, very pretty, but very fashioun style girl...you know? She seems to me like a teenager who is always willing to look so cool!! you know always in the move, in vogue!!.... And i hate that. I mean i was a bit like that in highschool... but that was like 10 years ago. I think she is also, careless for what i feel, there were several terms she used while talking with me that i dislike.... and i had to tell her, you know this words you are using are offensive. She said... well they are common words, in fact if you check them... they are not offensive really, but you are much more sensible now because of your situation. Perhaps, perhaps...who knows....... she might be a fucking bitch but she is not silly (there is no silly woman in this world i think).

Well she helped me to find where to register myself and open my folder as it was the first time i went to social security services. I have never been sick before... and now.. i am in such a situation i could die. Fuck off!! And when i arrived there to open my folder... i saw what you see in this pic.

Aha... closed. Or better say openned but emtpy... that's same like closed to me. In that moment i remembered... God Damn... Social Security... where the hell i have fallen... and it is actually Hell. Social security services in Ecuador are well known for being a disaster, careless attention, lack of medicins, too many procedures and few people working all the time. Yesterday as it was thursday before Easter they decided would not work whole day.... eventhough they never work whole day, just from 8am until 2pm. I had to wait almost an hour until this f*/$& woman came back!!! She attended me and sent to another windown that was... guess.... it was empty too. I was looking like this...

So well around 2h30 pm it was solved after begging, praying, and looking for someone to help me. I wanted to tell this man of the last window who didnt want to help me: you know man.... i could die!. And in fact i almost did. I told him: Please help me, i need to see Dr Xyz, i am ill and don't feel right. He looked at me help me out, but it was embarrasing... one does not have to beg for health attention... oh well... in Ecuador you have to.

Went to waiting room, it was almost emtpy... great!! I talked to couple of people there... one is a girl and she is also newly diagnosed. She was devastated and lost in the process... she didn't even had confirmation test. Before me there was a guy talking to her, and giving her motivation. Later i met this guy and he told me he has been 6 years ill and never hit any hospital bed. I though that is great!!. Then i asked... and since when you are taking medicines? Six month after i was diagnosed. OH SHIT i though. In this illness once you start medicines they are forever.... you can't stop them. You have to take them in strict schedules.. every certain time they give you different prescriptions but... you will be with medicines for the rest of your life. That actually might not be a problem.... except for the fact that this threatment is as strong as chemoterapy. Yes, it is. So side effects are always there. In the case of this guy, who was rather fat type he told me he had never had any side effects, but have heard about people feeling like dying and worst with medicines than without them. My God.. where did you put me? I though. I have been reading about side effects and there is something very common... Lipodistrophy. Lipo what? yep, i asked the same. This is an illness (or condition, i don't know) but well the thing is that due to some medicines, your methabolic work inside your body changes, and the body automatically reorganize the fats you have... and you can't control it. So slowly... you get a bit...deformed. Ok, not really deformed, i have heard about cases where people ends up with very thin legs..(Oh my God...am i starting with it? hope not...i haven't started with meds yet)... but they start to have big bellys, and look overweighted. For woman they start to see their brass start to grow... or you have too much fat in other areas like down your chin, face, below armpits. That is not reversible, it won't change with excercise. With the years some people took liposuction surgery as an option and some of them have seen good results. Isn't this all too big? Other side effects are fever, feeling sleepy, feeling tired, pain in differnt parts of the body, some medicins might affect liver or kidneys... this thing is a whole new world (another one? come on...let me rest). Risky in way of seeing it so i want to prevent myself from medicines.

As any illness motivation and care is a big thing, so i am planning to look after myself in the right ways so i won't need strong medicines never!. I am optimistic in that....or i was before seeing Dr. She called me, she is an old woman. Weighted me, took blood pressure... i asked. is it all alright? they answered me... are you worried? i said...well i worry about everything now. Blood pressure is fine. We talked and talked and talked, i told my synthoms, about the diarreah and all that. Showed her my first exams, and bla bla bla. Then she gave me something too strong that i wasn't ready for...

"Look according to the standard for non curable illness in USA there are four levels, the number 4 is the worst, cause it means the illness is really advanced and your risk your life. There are several synthoms in every level and there are different conditions to point out, but according to what we have just talked, i think you are on level 3 or 4" - she said.

WWWWHHHHAAAAAATTTTTTTT?????????????????????????????????

LEVEL 3 OR 4???

WWWWHHHHAAAAATTTTTTT???????????????????????????????????

My God this woman is telling me i am going to die ... soon. Fuck off!! Double shit!!! And then something happened...defense system turned on and my mind stopped processing anything... i keep on hearing, listening, recording... but couldn't analyze a word of what she said. Plus right now i really hate when they come out with unexpected things... come on... fuck you everybody...GIVE ME A BREAK!!!!!! She said that due to the illness and the diarreah i might have lost over 10% of my normal weight and that it was clear condition for level 3 or 4. Plus the diarreah have me weak so my body is not really fighting the illness now and bla bla bla... i might die soon. Whatever she said i thouhg.. "i might die soon".

Today is thursday she said... i might die soon i though.

what is your name she said... i might die soon i though.

I showed her that just the first day i got sick (07/04/07) i had weighted myself (God is so precautious!) and i weighted 179.12 pounds. Right now i weight 173 pounds. She kept on telling i had lost over 10% of body weight and my defenses are definitely low and the diarreah and bla bla bla. She convinced me.. i was lost and in worst condition than i though. Well i think i had such a face that she had to tell me... you have to worry about this and keep on living, you have to make your decision to fight and all that i have already trying to build in my mind before... but come on... level three is an earthquake in my ruined world. I asked if there could be a possibility that i can be ok, even after having diarreah and loosing weight... she said "we have to be sincere, i dont want to lie to you.... we have to face this and you have to know you are in a dangerous condition". Oh... i said, ok. fine.

We kept on talking to see if i had any other damage related with the illness and well... she examinated me and i was totally ok. Then something very embarrasing happened.... i told her i have had some eruptions in my legs in the past 5 years, she wanted to see it. I told her:

• Me: but i have to undress... it is down in my leg.


• DR: Do it.


• Me: Here? (there were 4 women there... including the pretty but silly psychologist)


• DR: yes, here.

Oh my God,..... that was embarrasing... but i though...whatever!!! it is not the first time i undress in front of others anyways... thanks to AIESEC. The eruptions were nothing actually, just something else in my body but nothing to worry about. Well Dr prescribed me some medicin for stomach infection and ordered like 5 more tests. With the tests answers she will confirm her diagnosis. I hope she will be wrong.

I left hospital around 4pm. Yep... 4 pm. Went to work thinking that i could die, i had to talk to someone so i told my other friend and i told my mother. Off course she almost die with me. I could not hide it, i was too worried. Later while in my work i could not just.. take out of my mind Dr words... level 3 or 4. Fuck off!! i am not ready for that i always assumed this illness was just starting in me... and that i could fight with Stichito (Stichito is the friendly name i gave to the illness... i know it is Disney style.. but come on, Stich was nice and Stichito is with lot of tenderness). Then i called other friend to talk about these standards and he confirmed the info. I started to made numbers and found....DR IS WRONG. I mean i haven't lost over 10% of my weight... just 4 or 5%, not much to be happy for but it means i am not within this parameter.

So, as for me. I think i am ok. I am in great shape (and i wanted to lose weight since long time ago anyways). And i don't consider myself in level 3 or 4 of any illness. Period. Thats it. I understand Dr might have done wrong numbers and my mind was not ready to correct her but i dont think i will die soon. Come on, look at my pics and i am in great shape. So next thursday i will take my exams and then i will be back to Dr's office and she will say... YOU ARE PERFECTLY OK. Because that's all i will accept from her.... no more bad news in my life. I have said it.

Plus, i dislike i feel they don't understand what i am facing now... i felt Dr was saying... this all is your fault. Plus i felt i was not even human for them... i was expecting some talk, some understanding... i am human being, new in this... i am not just a number. But i accept Dr must have attended over 50 patients yesterday so one more was not a big thing. Well... these are the news in my world, Reporting from devastation camp.. your friend. JuanCa.

And don't worry about me, i know i am fine. Period.

Labels: New life

Today is just a great day... of my new life. Yep i am still diagnosed with a non curable illness... but i am OK with it now. This illness is my new partner. Like Lilo and Stich (with the difference i am not Lilo and the illness is not Stich LOL!!).. but i mean... we both can get along now.

These days i was reading a blog of a woman with my same illness and said something like "everything has changed since the moment Lola moved with me". Lola is
the friendly name for the illness. I should actually find one like that... don't you think? It might also make the long way in front a bit easier. If i am not wrong, non curable illness are made of viruses, or something like that.. and they can't be killed because they are alive and change... they learn and mutates and become resistants to treatments. So... if they can THINK and LEARN to avoid the effect of medicines, if they are ALIVE... and keep on expanding inside my body. Wouldn't it be good if i sign the peace with my new friend?

I mean we are sharing same room (my body) what i do...affects him (or should i say "it"... who cares!!) and what he does... affects me. None of both can quit our
body... without loosing the other one. My new friend needs me... and i don't need him but i can't just get rid of him. He will be with me for the rest of my life. I can't leave cause it means dying and that means the illness would die with me. The illness can't leave... well.... it actually could, the problem is that there is no way to force him to do it right now, not a way to kill him.

OK, if.. illness thinks and is alive... can i talk to it? can we be friends a bit? can i talk to it like some people talk to plants and babies before being borned? can we sign peace agreement and say we won't kill each other?. If that is possible i want to try it...even though i know an illness like the one i have might not be trust worthy... he knows that if i could kill him.. i would. And i know his goal when joining me... was to kill me too. We can be friends... perhaps.... but i have to keep an eye on my back. Always.

OK, change topic!!!

HEY....today, is my first week after diagnosed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And i am so OK now!!!!!!!!!!!!!!!!!!! Isn't it great?. Not many things have changed in my life these week, just i have had a bit of anger and frustration.... not sad at all. I had to talk about my illness to a couple of AIESECers who asked about it, and it actually felt great. It was too heavy weight on my head. And today... today was a big day. I told my mother about it.

I wasn't ready, i knew i wanted.. but well... i was waiting the right moment, when suddenly the right moment crashed with me. She came to visit me this morning and said: "man... you are loosing weight... are you OK? have you seen Dr? what do you have?". Then i knew i had to tell her. It was the best moment... Momentum...it is all about it, don't you think so?. I could have lied... but then the Momentum might not have come again so i took my chance. Took air and said "i am ill with swwsxswxswe" (don't be so curious!!LOL). She stayed quiet....and then asked me if i had seen any Dr. So i told her a bit of how my last weeks have been. We went to talk to a counsellor and it was all soo fine... amazing for me... even though i know she might be suffering inside but don't want to let me know... i hope that is not
happening, but i guess when one is ill one can't prevent our parents from suffering... even if we wish so.

Well, that was a big movement, damn... it was a good Momentum, way to go Juan!!!!. Counsellor said... you are doing it right!!! doing the right things boy!!!.
And i loved it. It feels good to do what it feels right!. Tomorrow will be another good day, first Dr appointment. I need it, my life is all fine... but my stomach is still suffering of diarreah... will be a month already. It comes and go... getting worried about it. Tomorrow the science will relight me and save my life. :)

I have so many things to say.... but first i want to say is... this is me. As today... this is the way i look now. (pics just taken, excuse me for the terrible hairdo!!)

And yes... i am diagnosed with a non curable illness yet. Ahh and the beard is not related with the illness... it is just i have been very lazy to shave, plus someone told me it looked nice ;). But i posted the pics cause i wanted to say two things....

1. I am still the same, so threat me as the same. You might not notice the difference in my weight (i actually don't notice it in the pictures). But i have lost weight... how do i know? Now i can use jeans didn't fit me few time ago, plus... i see my legs, and i see then thinner. I mean.. i don't watch my legs often.. but one day i was wearing my socks and though... : "???? there is something wrong.... i feel my legs are getting thinner". Ahh and i don't have much belly now, Bingo!! Just don't be afraid. I am not a mummy yet.

2. I know what many of you are thinking. "Do i have aids?". And i have a comment for that... "why do you ask silly questions?, who told you i had aids?". I mean... i got fever and diarreah and still have it... but why everyone in Ecuador and perhaps in other countries think immediately in aids?. It is silly... man i could have got flu!!! the non curable illness? could be cancer. What if i have flu and stomach cancer? or brain cancer and diarreah cause i ate something wrong. Or what if i have grass liver... or what if i have aids?. Plus let me clarify you... it would be strange if i have aids right now... first i must be HIV + (HIV poz). And after several years i would turn into an aids living people. So please... DON'T JUDGE. don't be paranoid... and i am not talking about me... i bet if another friend tell you he is sick with something else... you immediately thinks.. he has aids!!. And the worst is that your thoughts doesn't help, cause you start gossipping... and the person can have aids or cancer or stomach infection... does not matter... the question is... do your gossips help? Answer is NO.

Really silly thing, but.... what if? what if it is true? what if i have aids? Or well... to say it correctly... what if i am just diagnosed HIV +? Would it make a difference? would it be more scary for you? would you love me more if i had cancer and disappear or be ashame of me if i am HIV +? What such a big difference might be? Tell me. Cause HIV or cancer or arterial hyper tension or weakness in my heart they are all serious illness and some of them have no cure. So whatever i have... shouldn't you love me just the same? shouldn't you stop gossipping with your friends about a friend who is very sick with none knows what!!! That's the reason why i haven't said what i have in my blog, that and because i am still not ready. It is my right to take my time to say it, OK?... that in the case i ever want to reveal it. So if i don't want to say it... then please stop gossipping.

These days i have learnt and realised how paranoid we all are and we can be... plus.... i have realised how our minds flies... and our moths too. And there is no help in that, at all.

Change topic OK? (didn't want to sound like a father lol)

Well, with my new situation, and my current challenges, i have found more motivation to stay alive. My goals that i though i could never get them... are now priority for me. Sooo.. university is coming back soon!! when? i don't know... i have no money to pay it... but something will happen and i won't die without having my diploma. Not that i will "die" for it (Lol these days i am so fond of black jokes Lol) but it is a goal. Also, i want to have a company, i am planning and thinking about it, right now i have some adds in MercadoLibre which is moving ok but i want to build up a company and i will make it. Another goal... go back to Russia... for long or few time.. i still don't know it. It all depends if i find medicines for my illness there... but i surely want to go back home. And home in my new world is placed in two places, next to my mother...and back in Moscow... in the middle of the long, cold and white Russian winter.... damn... how much i miss it.. one of the synthoms of my illness is that i sometimes have high body temperature... so Russian winter would fit me so right!!

As i said, all in my work is OK. I keep on working and none there knows i am ill, since i am not a danger for anyone than myself (if i don't look after my health).

Sentimentally i am alone and not waiting. Let's say... stand by period. Some people might want to date me right now... but i still don't have answers for this... so... i play around and date none. (i should have tried that before Lol). Emotionally and as a part of the ... acceptance process and resignation... i have mood changes sometimes.. don't know how often... but i bet you all have already realised about it...sometimes as i go into my feelings and emotions i yet find confussion... hey.. it was a big shock. Give me a break!! I continuosly fight among "the lost and its sorrow" and the "need to go forward and say all will be ok". Can you see the process inside of me now? hope you can put yourself in my shoes for a bit... and perhaps you could understand me.

Physically, in good shape. Only one stomach problem and normal synthoms of my illness which are not bothering me too much. I am thinking in going back to workout... perhaps running and perhaps swimming!!! oh yeah i love it!!! I wonder if i exercise myself that could make me thinner yet... but Dr wisdom will answer it tomorrow. As for the rest it is all OK.

As for my devastated world.... it is all alright. It is all full of ruins in my life now. But sun is shinning in my back. And the most important i remembered today is that even in the darkest nights... there is always a full moon. Which was God's sign to remind us... there is always a chance for light to shine in the middle of the darkness... and show us the path back home... may that home be the usual or a new one as it is my case.

I am planning in rebuilding my world and i am slowly doing it, first... was the acceptance.. the acceptance i lost all. The hardest was to accept i lost myself. Or at least the old JuanCa. I think i lost him. It was my fault. So i felt guilty about it. For you all my friends i am still the same... same nice guy... but for me... i am different. You won't understand it so don't force you Lol.

Once i accepted the lost.... i could spend few time with my personal sadness... few... cause i am not so much up for crying. But i have done it... few... sometimes reading other's blog... sometimes daydreaming about those old times when i was totally healthy, sometimes while looking around and feeling envy... envy because of thinking everyone around me is so healthy...and i am not.... and sometimes i cried while thanking to God for choosing me to face this... because i can now help others and give them a hand and a word of encouragement, like i did with you all before. One of the things i discovered with this illness... is that none can best understand someone who is ill and knows will die... than a person who is in same situation. There are several of us in the world and not all of them are lucky to manage the heavy weight on their shoulders, so i guess God needed a bit more of positive people in this side of the illness to help others.. and i am really up for it. It might cost me my life twice to be in this side... (as it already cost me my old life)... but it is a work that is worth doing it. I discovered a mistake in me right now... i haven't cried... i mean really cried. I have wanted to... at work, while walking downtown... in front of my computer alone... but i haven't done it. Just few tears dropped from my eyes..... God damn... i haven't cried... in any moment i will have to... i will have to let the tears inside flow. Perhaps alone....when i wont be afraid of letting me fall one more time.

With the acceptance of the lost, comes the assimilation... and assimilation sounds like resignation too... and resignation and assimilation gives you in some cases.. self forgiveness... at least in my case it did. And i thank God for it. Like my psychologist said.. "Listen... don't blame yourself cause you were not going through live looking for ways to die... that was not something you were looking for, it just happens... just by chance... it was in your path anyways... you don't have to blame yourself about it.. it is not your fault, nor your punishment... it is just a situation that occurred and that's all". Claudia my psychologist is really wise and so smart too. (and i never ever liked psychologist nor visited any... but she is really great, have been a big help).

Something curious... the devastation was so big... that i still cannot guess all the things i have lost... i know the superficial and evident ones... but while i walk more and more over the ruins this illness left in my world... i discover something new i will miss of my old me... and i feel sorrow again... and it hurts...and then i wonder one more time why this happened... and then... seat.... let the sorrow touch my heart... and i suffer... feel like crying... but i don't... and then i rise my face and accept it, and the whole process comes again. Thats where in the process i am now... after assimilation and acceptance i see a brighter world and that motivates me to change it. Lets re organise this i say... lets make a new world. I am experienced in this...AIESEC taught me, Russia gave me the strength... and life complemented with another lessons i will need for the rebuilding process that will come ... soon i hope. I still have to clean some of the things around....and sometimes i feel desperado about it, thats why i told the two AIESECers about what i have... cause the moment they asked me... i needed to explode, to scape from the ruins...needed to say to the world this happens to me. Desperation is still part of the process... i discover i need to talk, and surely i need to write. Don't talk to me about poems... one cannot make poems out of this... or perhaps yes. i haven't tried.

This is what i have to say at the end of my first week with a non curable illness.... you might have expected more clarity and less confussion in my thoughts... but you don't understand me. It was my world that faded away.... it was my life. I admit even myself though that after a week i would be ready to see everything different and more clear.... and after writing this and reading it back.... i accept a week is few time to overcome this. I am still human and i need to accept it. Accept it you too, please.

Tonight full moon brought me peace, to keep and stay in my new world and to be eager to have a good nap tonight. Sooo... i gotta leave you. There is so much to do tomorrow with my first day at hospital. That will help my world to go back to be the same... not in shape...but in power. My new world will be full of power to face everything... if i lost my life and myself...the old ones. What is left to lose? NOTHING!!!- Soo once you touched bottom line... is when you start to go up. And my life will start to go up soon. Don't worry about me, let this process be what it has to be. I feel good, i thought that i wouldn't... so good!! so good!!

kisses and hugs.

Labels: New life, same illness