Nomad JuanCa's Report

This is something we should change.... and the reason why this blog is here.



Thank you to my friend Luis from Mexico for sending me the link.

I have been quite sleepy today, in fact i slept from 5 to 7pm today at work. A total shut down...

I suspect my co worker knows what's going on.... but he does not say anything. While i was chatting with some friends today, i think he was looking at what i was writing. what a bad costume... by other hand i think he must be wondering why i am so tired all the time and always sleepy.

Perhaps he is not sure yet, or perhaps he knows but won't ask me about it. I'll be more careful.

I allowed him to go 2h before the end of the working schedule yesterday night and he brought me some food for lunch today. Nice deal... i was hungry. Today as i feel extremely tired i will request him to let me go early tonight. Mom is coming to my house to leave me some food and some money. I just want to sleep a lot. I feel i could sleep for the rest of my life.... that sounded funny :))))) .... better save my black jokes for myself hehehehe.

The fact that bothers me the most out of all this, is that i lost a good sale... because of been slept. This weekend he has done good sales and i have done not even one.

Well... i hope this week becomes better one than this weekend. Have good night.

Hi there everybody!. I am back to blogging after a sort of exahusting week.

Well...

You know.. this week has been a bit different and good in some ways, don't ask me why i haven't been writing in here.... i just didn't feel like doing it. Don't know why... perhaps because of the fact i am a bit tired of writing about Hiv. I mean off course i will live with it for the rest of my life, but well.... got a bit tired of thinking about it everyday... so this week i started to live more and write less. Not that i didn't think about the virus, i did... but i preferred talking to others instead of just talking to myself.

I spent the week working, my company had an exposition at Tennis Club (very fancy place!!) on Samborondon way, such a nice place... but so near the end of the world!!! (meaning it was so far away) Well it was nice, i learnt a lot from tennis players and things i want to apply in my life. By other hand, it was exhausting... long trips to get there.... long trips to come back.... few food (the company just gave me a sandwich, a coke and two bottle of water... you cannot buy anything in the Tennis Club, it is just too expensive... plus... come on... you know i cannot afford it). I visited my sister and stayed overnight one day...

Actually not much to say from this week, i feel a bit tired right now... like if working with a low battery... troubles keep on hunting me. I received a visit from a money collector yesterday at my work, from the company where i bought my laptop that i still don't finish to pay. I am just a bit tired of this, and of all... would like to keep on sleeping forever. Not feeling down right now... near of it, but not down... i am just tired... and perhaps stressed a bit.

ON the good side of the week, i made new friends online, a person from Columbia and another one from El Salvador, great people!! We have been chatting online, they are both newly diagnosed and contacted me through my spanish blog, it is cool to make new friends, they are funny people.... were very scared at the begining of their diagnosis, but now they are much more confident about future... perhaps a bit of what i write here and there... does help someone. That's good, at least i know this is not happening to me in vain.

I am at work right now on sunday.... it is sort of boring day....but well... it is just matter of staying alive and standing this longer... as long as i can.

Sorry if i don't have much to say these days... just feeling tired a bit. Have a wonderful week.

hey there!!! Long time no writing huh?. I have been without connection trying to safe some money and not keep on over spending. Anyways there are lot of things i would like to tell you.... time for venting i guess.

Ok,... so... where do i begin?. My laptop was fixed and i borrowed it to Javico. Still if we are not so close as before the truth is that i trust that guy... so i had no problem in lending it to him. He just had his exams... his viral load is undetectable yet (which is the best possible condition once you are diagnosed Aids). He didn't know his CD4 result but i am sure he is going to do fine... he is just freaking out too much about it. I understand this whole thing pulls his nerves and i wish i could help him more...it was the same for me... you all know it, i told him "Javico.. don't worry too much, let things flow... let it go...." but i am not sure if he understood me.

Yesterday i went with my mother to her training about Hiv. Not sure if i told you, she just finished first level of a training about Hiv and living with it, organised by meds without borders. She will receive a diploma like Health Promoter. She asked me to go with her since i was free and i accepted... it was nice but not all i expected.

I arrived there and well... they had to start the session about Hiv while there were employees taking a computer course around us. Before they started i took a computer and i was checking my email when someone asked me if i would take long because he was using the pc, i turned around... and it was a neighbour. Shit... such small world. Off course, he knew my mother and me were attending a Hiv training, hope he is not gossipping... even though knowing the people in this neighbourhood... by this moment everybody knows and they might be wondering what was i doing there??? "perhaps he is infected..." they would say. losers, i could have been there only to learn... but no... if i go to a Hiv training then "he may have hiv". I hate this paranoid way of thinking.

I got shocked.. to this training there are only women attending... i was the only man. 90% of them are over 40 years old and one or two are in their 30's. None knows if any of them is infected or relative of an infected one... they don't even know the trainer is a Poz person... they don't disclose. How are they expecting others to accept us if they are the first ones ashamed of their condition????. Got a bit angry.... By other hand, the trainer did some good in not disclosing.. he is gay and a bit feminine. I mean i am ok with gay people, what i would not like is that students would think "ah he is gay... for sure he has it" or "he has aids because he is gay... that's why!!". Although this could have been explained to them to eliminate the wrong idea from their mind... He should have disclosed.

The training was about "sensibilisation". It was a sensibility training.. one of those i have delivered but i have never received. That's nice. Why none trains me???? Ok i know i am not part of any foundation.. but shouldn't it be something like that for newbies??? at least in my Hospital??? there is an organisation at my hospital called "spring"... referring to a Christian bliblical term (don't know why they have to use biblical references to this kind of groups.... i mean i am Christian and i love Jesus as it is clear for all of you... but being part of a group with such a name... makes me feel closer to heaven when i what i want is to remain on earth!!!).

Well.. the sensibilisation started ok. He did an activity where we wrote down the names of people we loved and then he took one of those and asked us "what do you feel now that this person is infected?" In my case he took the name of my sister. That was painful. I cannot imagine it... i mean... the pain i would suffer if someone else from my family would get infected. I mean I will be there for them since i know how it feels.. but just the simply idea that someone else's in my family or in my group of friends gets infected... makes me feel so bad and useless. I though "mmm perhaps this training will be good". And then it all started to go wrong...

I don't remember clearly why but we reached the point where someone asked the trainer why hiv + people feel the need of infecting others??? I though "OMG!! and i started to feel the blood coming over to my head... a bit of anger..." I though he would reply appropriately and instead of he said "Hiv+ keep on infecting others deliberately because we all human being have a bit of evil inside". And i though "WHATTTTT??? WHAT THE HECK ARE YOU SAYING FUCKING DONKEY!!!!!!!!!!!!!". I hadn't disclose... being that none had done it... and that my mother might feel bad if i did... i didnt do it... and ok, i got afraid. You see... i have disclosed several times.. but when one of us is ashamed/afraid to do it in front of others... it makes us feel ashamed and afraid too... thats not a good example. Whatever, i assumed this donkey (sorry... trainer) had mistaken his words.. so i asked him in order to give him a chance to fix up his disaster "ok but you say poz people do infect others deliberately... i wonder how often is that happening... because it is not true that all of them do it... i know some friends who are poz and they worry about not infecting others" - I asked.

He replied "That's right, not all of Hiv+ go around infecting others deliberately... but lets say... from every 10 patients 2 of them usually do it. Two of them goes around infecting others deliberately".

WHHHHATTT SHIIIITTTT ARE YOU TRYING TO SAY???????????????????????????? - I though. He is a donkey... ok, i feel he is a bastard. He cannot go around and say such a crap about us... come on looser you are poz too!!!!!!!!! (i know he was poz cause Myriam from network of poz women had talked to me about this guy before but i hadn't meet him). Off course, people got afraid... and terrified and scared... and i was pissed off!!!!!. The beat didn't realise he was building more stigma around us ... and was not being any help. He changed topic.

The training is a bit frustrating... most of the people are not well educated... some of them were not even sure of what was the topic of the session of yesterday. Some of them couldn't even pronounce "confidentiality" and kept on saying "confidenciability". I felt frustrated. But the shit continued.

Someone asked him about life expectancy of Hiv patients. I rosed my hand saying i wanted to answer that cause i had read a report saying that our life expectancy has increased reaching now 39 years for non co-infected patients and 33 for co-infected ones. As soon as i finished he told me in front of everybody... Well, you might have read that somewhere.. but the truth is that "there is no life expectancy when you speak about hiv".

WHAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAT

TTTTTTTTTTTTTTTTTTTTTTTTTTTTT???????????????????????????????????

I am not exaggerating... i was that angry. How come the beast, donkey, asshole, bastard can say such stupid things in front of others... hello looser you have to deliver FAITH, HOPE, BREAK THE STIGMA, FACILITALE ACCEPTANCE of poz patients. No increase the fear, sadness and stigma around us. He is a bastard. I complained and i told him that was not possible, i had this research made in OXFORD!!!. And he eliminate the credibility of everything i said by saying "i have 14 years working on hiv and we have checked up lot of researches... none of them makes sense". STUPID!!. Now you understand how it feels to live in a country like this one... where stupidity has a high voice and is accepted by others without complains. Still with it, i told him... "I DISAGREE WITH YOU". He said, "you can disagree and we can keep on discussing this at the end of the session but i won't accept your point anyways... really... you know people can die tomorrow of a car truck, or any other accident... none has life for sure". And i understood that there is a gap... between the brain of this guy, his heart and his mouth. He might have a good idea but he does not phrase it well... and his feels no guilty for the stupid things he is saying and the damage he is infringing on us. Off course i know we all can die tomorrow... but thats why it is called life EXPECTANCY it refers to the possibilities of living longer of people, in average... not as a rule. I was so disappointed, sad, angry, frustrated... he knew it. He saw my face and you all know my face is quite evident. By this time he knew i was Hiv poz, no normal person on earth knows so much about Hiv like we patients do.

Well... the rest of the training was a bit better... he said some smart things and some scientific facts about other stuff... but the damage was done... now 13 more people thing we go around infecting others and that we are about to die soon. Sometimes i hate this world. Ok, perhaps not this world but the lack of conscience and intelligence of some people not measuring the damage their words can make to others. At the end of the session i asked him his email and told him i would send him some info... the research about the life expectancy and also wrote to him telling him i was poz and i wanted to talk to him to give him some feedback about his sessions. I guess i have to talk to him about being more careful with his words.... hopes he understands it.

My brother in law flew to Canada yesterday night for a month to finish his master degree.

Today i went to help to the network of positive women and to be sincere... i wasn't that happy. I feel a bit used. Why? because they are using me... Perhaps it is not bad but you know... for you all Aiesecers, you all know that when you are going to deliver a training we all do our own ppts... not with them... they don't know how to handle a computer, not to mention about ppts... one of them asked me to help her with her ppt presentation about the profile of a counsellor and when i said to her, ok lets do it.. she said "yeah but you know.. i have to go somewhere else to do something, could you do it for me?? thank you". I did it... although i didn't feel comfortable with it. I also had to add special effects to another presentation one of the leaders had already done... and... i had to serve them as a quick translator of some of their English emails. Which was a bit embarrassing because i realised i cannot translate easily. Isn't it silly? I can write all this in English but i cannot read it on real time in Spanish. My mind is divided.. part of it speak English and port of it speak Spanish... my bran cannot speak both at the same time and cannot see English characters and read them loud in Spanish. I am an English speaker... not a translator. Well.... this last part will only be understood by those speaking more than one language or having lived in multicultural environments. I tried to deliver all my help but i just don't like to do others work... i mean they should do it by themselves. i went there to help with extra things not with doing all the work they don't do. At the end i also understood they are not good in computers.. ok ok ok. They asked me to prepare a training for them where i could later on show them how to use computer. i will do that very soon.

Good news... as some of you may already know... MY TEAM FROM RUSSIA WROTE TO MEEEEEE!!!!!!!!!!!!!!!!!!!!!!! Oh God!!!!!! that made me soooooooooooooooooooooooooooooooooo happy. We are all in contact again, we are missing just one Dasha, Tanya, Masha and Sergej's emails but all of others are already in contact, they sent me this pics. Go Check them!!!!

First pic is Mitya and Stella. Second pic was my dearest boss... Masha, which words have inspired me for many many years. Third pic is Olya and Dasha (left) and Mitya and Stella (right).

They all mean a lot for me, talking to them makes me feel like back home... back to mother Russia, i am glad they found me again. We are in touch and i hope we won't lose the contact anymore. Monika from India (but currently living in London) also wrote to us back. It is great to be together with them. I just wrote to them with a brief update about my life and.... disclosed my status to them. I trust them... and i made sure in telling them, they should not fear about my health... i am ok. Those guys mean a lot to me.

Well tomorrow i will be the whole day in an exposition way out of the city in a very very exclusive neighbourhood... for some reason i am not much happy. The previous person from my company who was there ended up quite angry.... God knows why.... well... lets see.. hope it all works out fine for me. You see... there was lot to tell. Now it is time to go sleeping have a good night all.

Labels: Personal

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

Hi everybody, hey i have some news to tell you...

As you know yesterday i had my appointment with my ID Dr, to receive some results of my last tests and well.. get to know about my CD4 results and the results of my HCV test.

I woke up at 4am, could just sleep 3 hours... i managed to be at Hospital at 5.30am and i was the second person to be attended, as my Dr arrives 10am... i had to wait a lot. Well... right now i am downtown so i don't have much time to write and tell you all... i would just say that this hospital is very bureaucratic. Well... to tell you how it was... i got weighted.. my past meassured said i weighted 80kg about two months ago. Yesterday i weighted 79.5kg which means i am stable in my weight as usual ;). To measure weight is important in poz people cause it is a way to monitore your body is not wasting due to the disease or side effect of meds (this last one would not apply to me since i am not in meds).

At first they didn't find my tests results which got me really anxious and nervous... i mean... i have waited long for that shit.... i can't wait more. :( Well at the end while meeting my Dr the guy who helps her told us there is a way to check up my results on internet, how... amazing such things are capable over here.... well first i told him my Id number and he didn't find anything on internet... but then we realised he had misstyped... so entering my correct details he found out some of my tests... I was told my new CD4 .... is.....
























659!!!

Isn't it great??? those are great news. and guess what... my time in the cyber is about to finish so i can't keep on wrting right now, i just wanted to tell you all i am quite happy .. AND HEALTHY!!!!! :) hope things are going great for you too guys!!!.

cya

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

Oh yeah, great news, last monday Pfizer got the approval for their (new and first in its class) CCR5 Inhibitor!!!!. For sure you will say..."first what???". And i will answer you... i don't know... i just know it is something good. So this is what i know, they developed a new medicine to fight Hiv, in this case Maraviroc (also known as Selzentri or Celsentri). This is a new med that:

Selzentry, or maraviroc, is designed to block viral entry into white blood cells. It reduces viral load and increases T-cell counts in patients who have already been undergoing HIV treatment and are infected with a specific type of HIV, Pfizer says. From CNN

It sounds pretty good huh? although there are few other things to know about this new med. I read this med is going to be prescribed to patients already experienced in treatment, specially those that might have developed ARV resistance so they have a new option to fight the virus and stay alive. I read it will only work if your virus is CCR5-tropic (which i don't know what means...hold on.. let me check). Ok I think it is better explained in this page in English and in this one in Spanish. So if you got to read the pages you will realise there are good and and not so good things... well thats the story of all Hiv meds. They usually have side effects. I actually know few of all Hiv meds available, i decided i wouldn't read about them until my time to start treatments would be close. I guess i am nervous enough handling the few things i know...

Still with it this news make me happy, when diagnosed i always wondered how long would it take to new meds to be discovered after my diagnosis... it took about 5 months, hey not so bad :). I don't know how often the new meds appear... but i hope they do come often like once every two years or so.. i mean to give them time to discover new things. What about the cure you would say?. And i would answer you... the cure can wait... i mean if they are taking so long to discover new meds... it shows up to fight Hiv is not an easy thing to do... we all know it.. but it happens... so i feel myself served if they bring something new to help me out, i know the cure could come tomorrow but true is that chances are the cure might still take long to be discovered. I don't want to wait for a cure... nor to focus on it... i prefer to keep on living. So i am happy today... full of hope!! I don't know how many years will this med add to the current living expectancy of Hiv+ patients, but i know one thing... i will take advantage of those years. It is also clear for me that Maraviroc might arrive to my country in.... 5 years? or more.... but it is ok, i will be patient... and if i lose my patience... i will make a big scandal and kick their asses to bring it sooner!! (sometimes scandals are useful... specially when it is about saving lives).

If talking about living... well... first, i haven't yet changed my schedule, they said they will but they haven't met with us. So i am not earning more yet... lets see what happens... one never knows in here. Today i had troubles with a client who is one of those buying things and breaking them next day. I sent her to technical department but she somehow got to talk to the logistic person in headquarters and they started to push me... what for if they are the only ones to approve the solutions for this client??. Today the bloody client stayed whole day at headquarters and they were trying to convince her to wait until things "followed the normal procedure" which was impossible (now they know how it feels and the things i have to face in here). Well... they were requesting some things from me and it was not easy since i am not close to headquarters (plus it is a waste of time i had to do such things when the client should have done it herself)... the result... they want to kick my ass on monday. My supervisor is super angry, logistic girl (with whom i had already discussed before and barely talk to right now) is also quite angry... but i have the luck that my boss knew everything that happened and he is on my side. Hey... i am a good guy, i like to help others... but sometimes clients think that if you give them the hand.. you should give them the whole arm... not my thing. Yeah... i have enough troubles to solve in daily real life.

I met Claudia on tuesday, .... it was strange thing... i arrived there, she was in a session with someone... i could hear someone crying. After a hour, or so... she came out visibly sad... She was talking to Javico. I got nervous, i mean... i felt out of place, i was calling to my office and even though in leaving and not having my session that day. The impact was due to several things. First because i mean.... it was a shock, you see one of your good friends talking to his psychologist and she ends up crying (not really sure if it was her or him)? you inmediatly wonder... what happens?... i mean i don't need to know... but it left me worried.... I also felt out of place because i had decided i to be away from Javico... he did some things that hurt me... and i decided i would just be away. Sometimes people hurt us without intention... but sometimes... you know they will repeat it. I decided to be away until my heart got stronger not to be hurt by some of his attitudes and words. In the middle of this decission there was an ethical problem... when i got diagnosed and he disclosed his status to me... i promised him i would be near... i would be next to him until the end. He promised the same to me, the sort of promises you make to good friends only.

I always fullfil my promises... all the time... specially those who are about life or death. It was hard to try to be away, since he has been a good support for me during these times. At the beginning of my diagnosis, when i called him home and none answered my first though was "perhaps he is on emergency room right now....oh God!!". I am not used to lose people... and i don't like it. I can decide to be away from someone.... it is fine, but i don't like to see anyone dying. I tried to avoid him and i decided to be in touch with him only by internet... so to meet him at Claudia's office was a surprise.... that hit me since i saw him thinner. It was a slap in my face... shit what's wrong with him? what happened? i should have been there... damn... i felt guilty... i felt terrible having failed to what i promised to someone who once was a good friend. I told him i would be with him until de end... and even if we are no longer good friends i always try to fullfil my promises. I didn't mention anything about his appearance... i know when we are poz, we fear about looking ill... at least i do. So i smiled and said hi.

This situation i don't know how to handle it at this time, i know i want to be away from him by now. Although i know he might need me as a friend at this time. I sent him a sms yesterday saying "hey so cool to see you yesterday!! Glad things are going well with you and you are looking happy and healthy". I know he was not looking like that... but i have always though our beliefs affects our reactions and the way we see each other and how to deal with certain situations... if i tell any of you.. "hey what's wrong with you? are you sick?" it will affect you in case you are feeling really bad... so i prefer to tell you "hey you are looking good today!!!" So in case you are feeling bad... you might react and say... "hey... i am looking good, i should not worry... i can handle this specific situation happening to me". To phrase things in optimistic way has been something i have tried to work on sicne my diagnosis. Javico called me today... we talked over the phone for aboout an hour. He has had troubles since the last time we talked... he said it was something about his allergies and he could not breathe properly... he took lot of meds... and then was sort of getting over it but then felt ill again... right now he is trying to get over this situation. I didn't ask questions... it is clear for me he is not as open about his life like i am with mine. It is ok, we are all different people... plus... i was thinking yesterday that one of the things that affects the success of a person dealing with Hiv/Aids is the need to develop strenght enough to move on with their lives. I have faced lot... but i have overcome it, using my own skills and strenght... if it would have not been this way... i would not be even ready to face the virus... and i might not succeed... we found out everyday lot of reasons to feel down... but those of us who are strong... over come that feeling. I decided i would in reasonable distance from Javico... not to close to hurt myself... not too far to be away when he needs me. Just away enough to let him grow and fight his own fight.... and to develop the strenght he needs to make things happen for better in his life. After all only ensuring this for each one of us... is how we will keep on living.

Ok, the first good news of the day. Yesterday Ricardo and me proposed to our boss and to the owner of the store that since they are firing everybody (off course we didn't phrase it that way) we could help them to cover the space left for the missing person in the schedule of the store.... if they would pay half salary of this person to Ricardo and the other half to me. That would mean around 91 usd more (after taxes) to my salary. Not bad huh? It will help me to pay my debts and not to struggle ... this would last only two months since Rosa is coming back at beggining of September.

Of course this is not free... we will have to increase the working schedule and they will setup the new schedules tonight... I am a bit scared... i mean we do work more than normal since the store works 12h/7d the schedule was divided into three meaning a person would work 8 hours per day plus weekends... so when the normal working time for any employee in Ecuador is 160h/week.... we do work about 190h/week.... receiving the same salary as any other person working only 160h. Now.... i don't know how many hours we will work, and i am not sure if i taxing my health with such effort... i just know one thing. I need the money so i will take the risk... i just hope i don't fall sleep :(. If we get to do good sales and get to reach goals stablished it would mean i will receive even more money... that would help me out to get out of debts sooner. I know i won't save anything since i pay almost all my salary to the banks, but at least i could pay them faster.

So, i think at the end the chances are good. Lets hope it works out fine... have to plan how i am going to do to meet my Dr without making them suspect. Anyways, it was good news for the early morning. Have a good day.

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

Hey there :))) good day, i am at work right now (yeah i know... how can someone work on sunday?... but you see... someone had to make sure the world kept on moving!! ;)). I am at work right now like i said yesterday it will be a long day today, but the good part is that i have internet for free :))) heeey!!! to survive i just need music, computer with internet access and.... a big enourmous hamburguer with all possible ingredients!!!! (right now i am missing the hamburguer :( you see.. nothing is perfect).

I decided to post because i saw something that i wanted to talk about. Two things.. first about a report i got from the Development Programme of United Nations in Ecuador and second about what i was thinking about the so called "Strategic Plan against Hiv/Aids" and its view about the fight. First here is the file i got by email, spanish only... so sorry.
For those spanish speakers you can save the image in your computer and make it bigger. I read the report, it is actually sort of interesting, i mean they publish it like they are doing something. Perhaps they do... but i keep on thinking it is not enough... off course, i am not well known for being patient about my health issues.

When i decided i would fight against hiv, i learnt one thing... i had to get exposed (NOT OVER EXPOSED like has happened to this blog lately) but exposed in some way in my country, cause if none speaks... none cares.... if none see our face.... people tend to think we don't exist... but we do... we are here and won't leave anytime soon (crossing my fingers about it!!). It is hard because you know... i cannot get totally exposed yet... i remember the first weeks after my diagnosis i was planning to call to "cosas de casa" a tv show for families and ask them about saying something about hiv, i was even thinking i could go there and talk about it, telling others i just got infected and this could happen to everyone... it was an urgency... i had to speak about... and off course, i started in this blog... don't know if my reaction was good or bad, perhaps was a "sky falling" attitude some people hate (i have lot of that like everyone else)... but for me i just realised this was really happening and none was talking about it.

I talked to the first poz person who helped me... Max, and i told him what i wanted to do and he said "oh really? don't worry we all pass through that... it will go soon". No, it was not the answer i was expecting. I understood none is interested in speaking about it.. not coming to the light.... not even poz "activists". They are as hiden as any newly diagnosed. I forgot about my ideas of calling to that tv show. Then i foud out some place over internet where people did say something about it.. some blogs. And i though.. "yes!! this can happen, i could make it work for people over here too". Then i got involved in other place where i found some info that could help me... but well... sometimes info does not come hand by hand with understanding. You see that's our world nowadays.

I decided i wanted to do something.... i wanted to speak (and you know i am hard to remain silent... specially when i see others in potential danger of infection and they are not aware). So i though about it and i though about it..... i requested the chance to put a blog without my face. I was told that to post a blog i had to show my face.... meeeee??? showing my face?????? in a country where people who are over 20 years infected are yet unknown???. Hard decission... it took me couple of days to think about it... i didn't mention it to anyone.... it was my decission since i was putting in risk my life, my work, my future in this country. I actually don't remember clearly what got me decided... but there was something happening in those days that made me feel comfortable with ... disclosing in this blog first, and then disclose over there.

Off course i am not fool, i know the risk of exposition would grow exponentially... i could post my info in here but very few people from Ecuador read it and my friends have proved to be quite discret (which i thank you one more time guys!!!!). About the other place... i knew risk of exposition would be even lower... because very few latins read websites in English and eventhough my blog was in Spanish it would take time for others to discover it... i would use this time to secure my position. To Secure my position means to develop a way not to struggle if it comes publicly i am Hiv poz and i get fired.... there are no poz friendly jobs in here.... those companies (very few) who keep poz workers do not hire new ones. I am still in the process... if i get fired now i am mostly lost. Although... i would not be sad... i have done something to help others, could be one or two... or 20.... if it was only one... then it was worth the effort anyways.

The recent exposure this blog got, got me thinking about it and in fact.... made me realise Ecuadorian visits to this blog have increased lately from 5 per day to over 30 in some days. Uff... that's lot. And it was unexpected and non desired. I worried about it yesterday night and went to do some google... and guess what? I found an email i sent to someone posted on internet in another blog i wasn't aware of. You can see it in here. This just show Ecuadorians do consider internet a free place and are not aware of copyrights laws.... i just had some trouble about it few days ago. The fact that this person posted literally my email in his blog is not a big deal to me as long as the message reaches the desired audience... those discriminating poz people in my country. Off course this is ONLY MY OPINION and now i am aware some other people around the world think.... just different. In fact the post this journalist made of my email got a comment from a girl from Chile who wanted to contact me :) I added her to my messenger now, one more friend. Still with it i got nervous, i guess we all get nervous when we disclose.... but i know this has to happen. Some way people in my country have to realise the disease is here. I remembered my family was and is not totally happy nowdays with the idea that i write about this on internet... worst placing my pics... they felt quite nervous, but if i would have accepted their desire to be hidden... i would have given them the message that to hide/fear once you are poz is right... and it is not. It it so fucking wrong. Plus the indirect impact of my diagnosis on them... caused them fear... if i would have hide my family would have done it too... i didn't... and they didn't either.... now my mother is about to get a diploma like a health promotor after finishing a training about living with Hiv she got with Meds without borders, my sister is reading about it a lot and talking to others in her work about it, without disclosing my name but fighting stigma and fear in her own personal way. I am glad. Some times... some things in the world are the way they should be.

After reading the report from UN office, i just wrote to them... they were doing some sensibility trainings with employees and people from companies, i wrote to them and offered my help without any need of payment. In other countries people get paid to talk about Hiv, here the only paid are those who uses funds of Global Fund. As i am finding a new job a person i dated the other day (the one working in a medical trial i mentioned before) asked me why if i know so much about Hiv (she didn't know i am poz) i didn't apply for any foundation working on this issue. Mmmmm i have though about it, but nahh.... so far i don't feel comfortable with getting paid for helping others lives. I don't feel ok getting paid for something i would do for free... cause it is my desire... it is my way of helping out... my contribution. Perhaps one day i would accept a position somewhere (i have my eyes in the head of MCP of Global Fund Project here in Ecuador or the head of National Programme against Hiv/Aids.... not because of the money, but because i want the fucking damn shit to really work!!!)... but in the mean time, i am not interested in being an "employee" doing something i am paid for.... I prefer to help to fight the illness from the voluntary side. It also allows me involve to different organisations and help them in many different ways.

There was another thing callig my attention from this report, the fact that Ministry of Health said "Aids is not only a problem of healh but a problem of development too". I found it weird i mean even developped countries got aids. Max came online in that moment (the poor guy comes online everytime i have questions....) So i asked about it to him (he has been sort of activist since i don't know how long ago). He said to me it was because we lack of quality education.... i replied saying that we don't need quality education to fight aids... i mean we need education to fight it... but if we wait until we get quality education over here... come on.... it will be centuries. He then proceed to explained me that quality of education is just one thing...but the whole concept of how aids is spread more when there is a development problem refers to the fact that without development few options are available for people when it comes to protect their health. No free codoms, no free lubes, no education on the issue, lack of money so people prefer to pay a taxi to take the girl/guy to the motel... instead of buying condoms... specially if you are kind of drunk and without much money. Then he added "It is about everything, education, prevention campaigns, integral health care, reduction of stigma and discrimination, favorable laws, no corruption, etc, etc, etc.". mmmm yeah in other words, the lack of equality in the world is helping hiv to spread faster.... it all depends on us... on how we as human being balance the worldwide scorecard ... and if we make it happen fast.... wich pitifully might take long (i am still optimistic). To talk to him helped me to understand this concept. Thanks Max

Ok post log enough huh?. Gotta go...

Oh i just got an email from Luz my friend who lives in the USA. She liked Artem's songs (i told you his songs were great!!! he is a great singer hehehe). Dear i will contact Walter and correct the url address of his musical site. I am glad you found the info about the risk of lossing hearing/viewing capabilities useful. You know... i got in troubles because of it hehehehe... i will explain you by email or phone one of these days. You are right, it is good that medicine nowadays is so developed that these kind of potential risks can be avoided... and about mentioning this risk to the poz person you know, yeah it sure could help. We have some talking to do about this thing, i'll send you an email.

I also liked talking to you, you are a funny girl :)))). Ok dear gotta go... the work is calling me!!!

Have a good day everybody, sorry if this post was too long but i was sort of in mood for writing.

And guess what????... while i was just writing this... a mature woman with troubles for hearing just came into the store to ask me for some accessories.... I am sorry i could not understand her at first... she was not pronouncing words completely and the phrases were not complete... she got angry with me cause i couldn't understand :( what a mood... but yes i knew what was happenning so i was eager to help. She tried to explain me what she wanted to buy but i was confused if it was a pre paid card or a charger or what... then she looked at me angry and said "come!!". She showed me what she wanted to buy. "Ohh now i know sure sure not problem, hold on please". You know what?... i used to do the same when i was in Moscow, when i first arrived and could not communicate in English with many people in the streets. In that time i used to have a pen and a peace of paper and ask them to write prices of what i wanted to buy... or i'd point what i wanted and make the amount of items (1, 2, 3) with my fingers.... For God sake... i have already experienced this and i didn't remember.... This woman reminded that once upon a time... i was unable to communicate with others around me and i could handle it after some time.... yet it is annoying at the begginning cause we (Monica from India and me) had very few russian vocabulary... i remember once Monica told me "you know.... i wish i would know how to say cheese in Russian... i am so fucking tired of eating syrup all the time.... it is the only flavour i know how to pronounce". Hehehehehe, those old times. I finally served the woman who didnt even wait for the invoice, she had to pay me 2 usd plus taxes but i think she didn't hear me properly cause she only paid me the 2 usd price marked on the item...ahh well no problem i can pay those taxes for her, it is not much. It feels good to help others and sometimes it is amazing how what we learn is just a training for what we are going to live. It is so cool to keep on living and learning more and more everyday. So glad right now!!!

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

Artist: Robi Draco Rosa /Song: Cruzando puertas /Country: Puerto Rico

Talking to friends and the changes at work

These days have been a bit confusing and frustrating, not because of me since i am doing fine but due to the changes at work. I have a new boss. The owner of the store bought a new one in the other side of the city, that one is well known for being the first or second best selling store in the whole city. We all wanted to be trasferred there. I did good sales this month trying to make merits for that. At the end of the month i was informed they tranferred the lowest selling co worker i had. ... got quite angry.

The idea behind that as i got to know later, it was that as i am a good salesman i cannot leave this store because they would be unbalanced. SHIT!!. So... imagine this... i am not promoted because i am too good to go to other place. Isn't it stupid? and yes i got quite angry... i have developed bad temper lately... and now i say lot of bad words, i didn't use in the past. Who cares?.. ok gotta work on that and change. Well... my past boss, Shirley was promoted to the other store... and the brother of the owner was appoointed as my new boss.... not much expectations of making a career in this company huh?.

Yesterday night i had a big headache, don't know why... nothing health related, just a headache, i didn't get pay... now they are getting used to pay us late. I am getting tired of this. I have delivered few cvs, lets see how it works. Anyway i cannot complain much... yesterday i did a big mistake... while leaving i left the store openned :(.... i was lucky cause nothing was lost.... shit... they were quite angry with me. I was lucky too cause they wanted to complain with me but were too busy to do it... damn... i have to focus more on what i do and be more careful.

Something very cool happened, Luczi from USA called me today, hey that was nice... we had a very funny and interesting chat, i liked it a lot. Hey friend thanks for calling!!!. I talked to Kaire from Estonia, a friend who is AIESEC Alumni and was here doing a traineeship some time ago, she is a good friend of mine and well.. i haven't told her about the "changes" in my life. Today i told her... she was surprised, still with it, she was very nice and thanked me for telling her. She is a great girl, what i would call and enlighted soul. We were discussing about treatment options and the right of patients to protect their identities... it is a double side knife... i mean by one side we protect cause we fear stigma and discrimination and by other hand we are stigmatized and discriminated because we live hidden. People tenbd to think we are still "not normal", cause they don't know how many hiv+ people they talk to everyday. The fact is that the epidemy at this time is big enough to be counted in the goals of millenium of UN. Nothing to fear about... just something to be understood.

My new boss just left the store, i am starting to like him... he does not tell me "Juan Carlos", he tells me "JuanCa" (don't know how he got to know my nickname)...aaaaand... he didn't complain about the door mistake last night... he just told me "it is ok, thanks God nothing was lost, just be more careful". Cool he is sort of calmed guy, I like to work with cool people. Today i forgot my meds.... mmmm.... Like James Blunt would say "where is my mind?"

Talk to you later