Nomad JuanCa's Report

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

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

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

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

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

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

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

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

Labels: New life, same illness

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

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

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

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

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

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

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

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

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

Labels: New life, same illness

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

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

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

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

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

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

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

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

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

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

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

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

Labels: New life, same illness

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

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

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

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

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

The Wedding of my Best Friend

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

Labels: New life, same illness

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

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

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

MTV MADE:

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

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

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

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

Labels: New life, same illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Labels: New life, same illness

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

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

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

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

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

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

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

Labels: New life, same illness

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

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

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

Good, diarrhea is still gone

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

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

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

Juan Carlos:

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

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

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

Peter

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

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

Labels: New life, same illness

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

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

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

News from War field. I got rash on my face. Both sides of my cheeks... it is not like the lacerations i had. These are just pink/red points that sometimes are more visible and sometimes no. From distance i don't see them but once close to a mirror... i see them all clearly... but off course i am the ill person so i see many things everyday in me... believe me. Mother told me they are visible but not that much.. looks like my skin irritated.. but it is clear symptom of my body fighting the hiv infection. There are several symptoms a person living with Hiv suffers before starting with meds. Prior to meds and once you tested positive it means your body recognised the infection and it starts to fight against it. Poor body does not know it won't win the fight... but it reacts like with any other illness... so here the synthoms:

• Lack of energy


• Rapid Weight loss


• Frequent fevers and sweats (specially at night)


• A thick, whitish coating of the tongue or mouth (thrush) that is caused by a yeast infection and sometimes accompanied by a sore throat


• Severe or recurring vaginal yeast infections


• Chronic pelvic inflammatory disease or severe and frequent infections like herpes zoster


• Periods of extreme and unexplained fatigue that may be combined with headaches, lightheadedness, and/or dizziness


• Rapid loss of more than 10 pounds of weight that is not due to increased physical exercise or dieting


• Bruising more easily than normal


• Long-lasting bouts of diarrhea (more than a week)


• Swelling or hardening of glands located in the throat, armpit, or groin


• Periods of continued, deep, dry coughing


• Increasing shortness of breath


• The appearance of discoloured or purplish growths on the skin or inside the mouth


• Unexplained bleeding from growths on the skin, from mucous membranes, or from any opening in the body


• Recurring or unusual skin rashes


• Severe numbness or pain in the hands or feet, the loss of muscle control and reflex, paralysis or loss of muscular strength


• An altered state of consciousness, personality change, or mental deterioration (memory loss, depression, other neurological disorders)


• Children may grow slowly or fall sick frequently. HIV positive persons are also found to be more vulnerable to some cancers.

WARNING: Not all of these symtoms show at the first stage of Hiv infection, the most common are those in fucsia (pink), that's what you have once you are hiv positive and while the illness go forward to make you weak. All the others are symptoms of a person who has already developed Aids. Off course the idea is never reach that part so your meds start just before falling into it.

So... what's the current strategy to win the war (almost all over the world)... Drs test your CD4, if you are above 350 you are just with simple prophylaxis, just like what i am doing now and have periodical Cd4 tests to see how you are doing. If you are below 350 CD4 they talk to you about meds but it is really up to you. If you are 200 CD4 or less... then you HAVE TO start with meds RIGHT NOW!!. If you are not with meds you stay with prophylaxis until the virus advances enough to pull your CD4 numbers down and reaching the limits i mentioned above. I personally don't like the waiting period... but well, this is how degenerative illness works, one has to be patient. I though i could stay long without meds... but now i understood it is unreal, there is no way to stop the virus, the only thing to do.... is to try to stay healthy so only the virus will affect your CD4 not any other illness, but there is no way to stop the going forward of hiv virus inside my body.

It is very important to understand that not all of these symptoms show together at the same time, and that having one or two of those DOES NOT MEAN YOU ARE HIV POZ. That's why you have to take the Hiv test every six months.

I my case i have developed several of these symptoms (lack of energy, rapid weight loss, fevers at night, fatigue, skin rashes, mental deterioration) and some others i should not have yet (rapid lost of almost 7 pounds, long-lasting bouts of diarrhea)... I know... i know... i worry, i do. Although without CD4 i will get no meds so i have to calm myself down, plus there are many other illness that might produce my diarrhea like gastritis or lacerations in the stomage. A person can only do what is near his/her hands, so far all i can do is to try to calm down and look after myself. Today diarrhea is gone. Good news huh? :) I will try to find a way to meet a non-expensive infectologist to talk about my rash... Mom is worried, and it is long to wait to my appointment in social security... so lets see.

By the way i just discovered my english ortography has been terrible, sorry to you all english speakers, hope you understand i had never needed to write about medical terms in english until now... so i am still getting used to.

A told a friend of me, Max, who is also hiv poz, that none of my friends in town are calling me nor talking to me anymore. Some of them post support messages on my blog but when i tell everybody i want to go out... none shows up, none seems to be up for meeting me (that's discrimination too dear AIESECers.. might not be intentional but it is discrimination at the end), and he told me something that left me thinking... "they don't want to meet you cause they know eyes cannot lie....". What does that exactly mean? i have two translations...

1. their eyes will tell me they are sorry and they feel they can't show themselves weak cause that might affect me.


2. their eyes will tell me they are scared and terrified of being close to me... not to mention the fear of touching me or shaking hands or having dinner with me...even after i have done this big effort to explain everyone i am not a menace.

Well.. whatever Max's words meant to express i have something to say... I don't need to go out with you guys anymore. I asked twice and none rised a hand. Fine... if falling into this new world means i will also need to have a whole group of new friends... then i will do it and they won't be only poz, cause i am not the Hiv virus, i am just a person suffering of it. Once again we all should eliminate the hiv virus from the world, not the people suffering of it..

3.00am here, too late... i have to go to sleep. I need to rest. I am fine.

Labels: New life, same illness

My life seems so clear in days like today... so calmed, so simple, so stable... like if nothing of all of the storms i have faced since december 06 would have been real. Today i was so calmed that my life seemed to be completely normal. So normal that i though... "perhaps i really don't have hiv". And then i remembered one of the first things.. i daydreamed after diagnosed....

"I was waiting outside a laboratory, waiting for some test results, perhaps CD4 or Viral Load test... i knew i had been diagnosed, but when the Dr came in... he looked at me stranged... and asked me:

And i complaint, but deep inside of my heart i was so happy... cause i was free...and i could be a normal person again"

And it is always after this part that i wake up and find myself, seating in front of my desk at work or sometimes in a bus going home, or perhaps walking back home at night... and i look around and think... "perhaps i am not really ill... also in this country such mistakes can happen. Perhaps i am really not an hiv living person". And i know i could eat that tale... and believe it, .... in negation.... but when i open my suitcase or backpack.. and see three or four different type of pills, when i go to toiled and realise my stomache is still weak or when 9pm or 9am arrives and i know i have to take all pills just now... it all falls from heaven again and i accept I am ill or better say i just give up.

Today i was a bit angry about something. I have to take these pills, ciprofloxicina... and i have to buy them cause in social security there is no. And i have found same pill with four diferent prices. 0.90 USD, 0.75 USD, 0.50USD, 0.41USD. Why don't they setup just one price? (preferably the lower). One has to profit in business.. but you know.. the difference between the first and the last is a lot... they will have a profit of over 50% if i would buy the first pill. That's not right. They are medicines not toys, is not luxury.

I am right now making a research about the "Ecuadorian Coalition of People living with Aids". Myriam and Max belongs to that group and Javico told me he is also interested in joinning them. He told me they do lot of trainning about Hiv related topics and organise several projects to ensure government pays attention to the needs of people living with aids. Should i join them? Lets see what they do....perhaps they might be like Aiesec.

Labels: New life

My first CD4 test

Ok, well.. sorry i didn't post this yesterday night but i was a bit busy with a surprise i will tell you next week. Before starting with the whole story of yesterday i would like to tell you a bit about mr probiotics, .... he has not helped me much. First he tastes really bad... ouagh!!! .... i mean it is not terrible but it is not a chocolate ice cream for sure, i though it would stop my diarreah but not, i am still flowing like a river (if such comparison is possible). Sorry if i touch disgusting topics but come on guys, remember this is an almost medical blog, lol!! You know the funny thing, since Mr Probiotic is an alive micro organism and physically they look like dust, i take them with water... but i have found myself a bit nervous about it, i mean... i have never drunk something that is alive, so when i put them in the water i try to drink them immediately cause i sometimes think that if i let them be there for long time i might see them swimming in my bottle of water!!! or requesting for help not to sink!!!! That´s what i call weird thoughts huh?

I woke up 4am yesterday morning by myself, i know i know... stress... stress... i decided to go to sleep again, i can be ill but i need to rest, mom called my at 4.30am as agreed, then i just went to bed again... sorry i just discovered i was not much mood for a Cd4 test, deep inside i wanted to avoid it, negation. I know i have to go through this... but i don't want to.

I arrived there, there was not a long queue, but man..... i had to wait for a bit more of half an hour, when i arrived i was fine, but during waiting time.... i became anxious... couldn't stop moving... looking at everywhere... saying myself "what the fuck!! why don't they move their asses?!!" The other room was crowded.... i was getting really nervous. Yesterday they didn't have reactives for some other tests, luckily Cd4 was not in that "list" look the way they publish when there are no reactives. I though: "they take turns, one day there are no reactives for this, next one no reactives for that one... next one no reactives for that other one....". While waiting i noticed something i though was weird... there were people going out of the lab with their small bottle of blood in their hands... i mean patients carrying their own blood sample!. I though "mmm that's strange, but perhaps they are in urgencies so Dr asked them to take the sample fast and bring it over... ".

Then this Dr (same the last time) came over, i am starting to dislike this old man, he is not treating people nicely... and when i saw him i feared he will reveal to everybody about my test like he did the other day with the black woman, luckily he didn't say a word... but i was breathing fast already. I expected to see the black woman yesterday, so we could chat... but i didn't see her. Instead of that i saw Lot, Lot of people taking Cd4 test, well i assume cause there were several gay people (how do i know? there were some slightly femenine). I have to clarify i have nothing against Gays, i have always been a gay friendly guy. I assumed the gay people i saw were taking Cd4 test, but you know...THAT IS NOT RIGHT. Actually some of them were not taking Cd4 and were not Hiv+ i guess. It is all a silly paradigm in our mindset. Well, i distinguished some people i have seen waiting outside of my Drs office so i though... well... i am not the only one for Cd4 test, in fact i really saw several people... i guess we all take the test same day. As i am new in "the club" and i haven't really talked to much people (i have been quite afraid) none approached but i could see, they all know each other... and they respect themselves, gays, straights, they chat all together without discrimination cause they know something bigger than silly paradigms keeps them together: Hiv, and they know they need to support each other. I wish people would not need to suffer of Hiv to accept others and no discriminate.... am i daydreaming? YOU answer this.

I finally got into the other room, and there was... same "nice" poster of the other day saying "hey watch out, you are gonna die of aids!" If you click on the pic you will get to read the first words "remember..." If you have read my past visit to this lab you will know what i am talking about. I heard someone saying loud "for all patients taking CD4 or CD3 (???) test, tell to the Dr in advance so he will deliver the blood sample to you to take it to Dr Villao office". Then i understood how it worked... damn... i will carry my own blood?!?!? that's scary..... Afterwards i saw in the other side of the room there were still the always ignored posters for Hiv prevention plus an invitation saying:

<<Association Manantial (Spring) kindly invites you to the conference "Human Right for PVVS" Saturday, May 6th in the door 4, 10 am>>

By the way PVVS, means people living with aids (in Spanish off course). Claudia told me that Association Spring is the support group of infected people within social security hospital, There are three main support groups each one in every hiv government programme in this city. I though it was interesting to have a support group, eventhough i don't like their names... Manantial (Spring) is a typical Christian or religious word, that refers to several parts of new testament... i mean, i am ok with the word, but not for a hiv support group, it makes me feel too close to heaven... like if i would die (off course i would but who wants to think about that??). When Claudia told me the name of the association first time i said "what a name!!..." and she told me "Yep, i know... i think the same i don't know why they have to chose such a names instead of being support group A, B or C or 1, 2, 3". Well, i realised after reading that invitation how much my life has changed... only two months ago i would have read that invitation and ignore it.... i would have tried to forget about it, and really avoid it... you know, hiv? no no no... not a good topic. And now... i read it and realise they are going to talk about my life... they will talk about me... i want to know my human rights, i have to learn to defend them. Only two months ago i would have never ever think of attending such a conference... if someone would have invited me to such i would have said: "human rights for aids people? no it is too depressive for me, sorry". Or i would have invented something else to do, same day at the same time... and now... i though "i have to be there". I started to check my working schedule and i think i can make it. I am afraid of going there alone... it would be to disclose myself to others in my city and i am afraid. I will ask Javico if he wants to be with me, if not i am going to go alone... i have to do it for myself. I won't invite any of you for the previous exposed reasons... and i understand you, this might be a seminary for me not for you. Although... i have a question for YOU ALL, do you know the human rights of HIV/AIDS People???? Yes or no?? which are they??? If you don't know them... how would you respect them????? I understand for you all might not be pleasant to be in a room surrounded by infected people (you might think it is like a room full of living dead) and you might fear of being infected and you know... that's not possible, but don't worry, i know how you might feel, i have been there too. I just think there should be same conference for non infected people... so you all can get to understand us better. The question would be... who would attend?????

While i was thinking all this i heard my name, ok... the big moment has arrived. Same old man that was checking orders outside was in charge of taking my sample. I told him "i am here for a Cd4 test and..." and before i finished, he had already inserted the needle without any caring or any warning... i though "OUCHH!!! MOTHER FUCKER, FUCKING BASTARD OFF COURSE AS YOU ARE NOT THE ONE WHO IS ILL, SON OF A FUCKING BITCH!!!!" While i was praying for him in my mind (lol) he had already taken the bottle of blood out of the receipt and handled it to me: Take it - He said. BUT the needle was still IN!!!!!!!!!!!!. I though "The needle is INNNN fucking bastard!!! you are going to make me bleed!!!!!!!!!! are you trying to kill me??!!!!!!!!!!" Then i realised i wasn't bleeding cause they are using a modern (finally something modern!!) system (Pic) where you put the needle in and then stick the bottle, once you take the bottle off... you don't bleed....and this bastard should take the needle out NOW!!!! Finally he did so.

Then he told me, "go to Dr Villao" and it was then when i realised there was something small and warm, very warm in my hand. My own Blood. My first Cd4 Test. My hopes for not starting with meds. My life. I was literally carrying my life and my future in my hands... and it felt so warm. I got shocked and felt nervous and afraid. I was holding my hopes in one single hand. We never really feel we can touch our hopes.... well... yesterday i did, and i carried them to the Dr Villao office. I watched the bottle while leaving the lab room.... and i though... "it looks so red" i know i know... but i mean i though "it is alive"... you know.. i am carrying a part of me in this bottle... and i don't see the hiv... but i can't avoid to accept it is somewhere there... and i wished again my story was not as it has been. It is sad... damn.... i want to cry now... same like in that moment, but i decided to forget about the past and things that will never come back... and then i though "what the fuck!!! i am carrying my blood in my hands and if it coagulates?" I knew i know nothing about blood. ( i was explained later that this bottles for blood sample have anti coagulation components... wow... science always amazed me) so i hold it tight in my hands to keep it warm (and because i was afraid of letting it fall on the floor because of my nerves) and tried to run fast to Dr Villao office... once i was near... i could not avoid do something weird and silly... but meaningful. I took a pic of this part of me that will define my future in this fight against Hiv. Here it is.

I know it is weird, might be disgusting, and all that you want.. but you know.. in that small bottle... is my future. My hope to keep alive... and my unknown reality... that small bottle will tell me... how good or bad i am in this war against hiv. It is not going to be the last bottle i will see in my life... but it is the first. That makes it different, that makes it so important.

Arrived to the Dr Villao office, she took the bottle without asking me anything. That's it? - I asked. That's it - She said. I wondered if she knew what the test was for, and what was my name and ... well... there were some numbers written in the bottle i guess that carries all my info. 282..that's me!!!. I was still in shock after such a bloody experience so much that when i was leaving the hospital there was a girl with a just born baby who told me "Hello" i replied hello but my mind was in other place... and then i reminded her!! She is the girl i met first time i went to see Dr, she was newly diagnosed after her husband was diagnosed hiv+ a week before. I turned around and said: "How..." but she was already away.. it was starting to rain so she was in a hurry because of the baby, i wanted to know how she was. I hope i can see her again, she is very young... would be like 25 or so. Life is so unfair with many of us. I hope her baby was not born poz, that would be so sad.

I reached home, did my post, flew downtown to meet Mother and Claudia and yes!! I made my mother to stay with me while in the session. When i just arrived to the foundation they were asking me how i was and all that and you know all fine and i told them about my bloody experience and they were terrified. Yep that's not human... but it is the way some people treat us, like if we were not human... and facing it... it does not make me happy.

I was asked about my diarreah... "ahh well... it is still there" Claudia and Silvia looked at each other... "YET!!!" yes, yet - i said. "Listen this is wrong, you have to stop it. It is serious thing Juan Carlos it is already too long time it is just too long. are you taking your meds?" - asked Claudia. "Yes i do but it does not work, i have tried with some probiotics but nothing have changed. Dr also told me if it didn't change i should try imodium pills but i haven't done it cause i was expecting everything would turn out ok" - I replied. And they all almost killed me.

• Claudia: But Juan Carlos, if Dr told you to take imodium pills you should have done it


• Me: i know but i mean i don't like pills too much and i though with the other medicines it would be fine


• Claudia: But Juan Carlos you have a month and a half with diarreah you are loosing weight!!! your body is wasting!!! you have to stop it now!!!

They are right. During my appointment with Claudia she pointed several things i was doing wrong. First, my communication with Mom, there is a problem of communication from both sides - She said. We defined some ways to work on it and finally my mother accepted to meet her and have 1 to 1 sessions. We talked about the fact i have to tell my sister about my diagnosis... so.. i will start working on it. Oh God!!. Before finishing Claudia pointed me something very important.

"Juan Carlos, you have to understand something. It is very good you are optimistic about your future and your life with Hiv but you CANNOT GET TO THE EXREMES. The extreme of optimism is NEGATION. All extremes are wrong, you have to be optimistic but don't deny something wrong is happening to you, this diarreah is a clear example. You are just thinking it will fix by itself and that is not going to happen, you are optimistic thinking nothing will go wrong and you are not understanding there is something going wrong already and you have to SOLVE IT NOW. Plus, you mentioned you are not taking pills on right times... listen, while newbies start visiting Drs they are prescribed prophylaxis to stay ok and without synthoms but it is not only because of that... it is a training. Dr prescribes you medicines to get you used to the strict schedules you will have to follow once starting with ARV (anti retro viral medicine), and you know.. ARV are not avoidable, despite how good you are now... all hiv patient touch bottom some time and ARV therapy starts, that's the truth and you know it. Once you start ARV your schedules will be tight and you have to be punctual. If your pill is at 10.15am and you are swimming on the beach... you have get out of water and run for your pill, or if you are climbing Santa Ana Hill in the stair number 305 at 10.15am, you HAVE TO stop and take your pill. You cannot be late!!! You have to understand it. If you are late it is a fault to the protocol and you risk yourself. This is something patients usually don't know but you have to know it so you can understand how important this process is, please... be more careful and go back to take the medicines at the right time."

uff... this is all bigger than i tough. Although i knew it... i was still in negation.. nothing will go wrong, nothing will go wrong... well dear Juan Carlos and dear friends... some things will go wrong, some time, some where. The good news is that they will not remain wrong if i stick to the process. Ok, i got it. We left and i went to buy the imodium pill, it is supposed to be a pill that cuts the diarreah but does not solve it. For that i have to keep on with Mr Probiotic and the other medicines. I took one yesterday night... and i am still with diarreah... ok, don't panic, lets give them a chance to work. I worried about what Claudia said... so i weighted myself yesterday.

• 07/03/07 Before getting ill, 82kg


• 05/04/07 Met my Dr first first time, 78kg aprox


• 11/04/07 Met with Claudia, 80kg


• 19/04/07 Yesterday, 79kg

Ok, my weight is definitely going down.... like the economy in latin america. I do worry, but i won't stress about it... instead of...i will do something. Since today i will be more strict with my medicines and schedule. I will stick to my diet (which i wasn't doing as you knew) and will pray God for a big help. The problem is not about loosing weight, but about loosing water and with the time... losing muscular mass... and the wasting syndrom and then... shit!!! Lets stop it. That's it. I will do something and that's all. Whatever happens in future only God knows and i will trust him and not to worry, lets focus in right now. Period.

I told Claudia i disclosed in internet, and that my mother was worried about me and my safety. No mother wants her son to be pointed on the street. After asking me about the reasons why i have done it, Claudia told me "you know it is good you do feel you have a reason to for living and you want to fight for your rights and help to prevent others. Although you have to understand what you do affects your family too, so be careful, and think what you do. By other hand is good that you show your face and put it in front, cause many people don't, i have met with you 3 people who have been able to say to the world i am hiv+. And that's good cause that helps others to know and understand what it is all about and to know this is not as bad as they think and much more important... they need to learn to know there is nothing to fear, no reason to discriminate you, you can have your normal job, a normal life, you can even marry without putting none in risk. I am glad you are doing what feels ok for you, but... remember... not everybody will react ok to what you do. With the time, you will meet people who might hurt you because of what you are doing now... and you better prepare for it. It takes time to educate others... and pioneers always face the hardest".

I just hope i will never complaint to myself for what i am doing... until that time. i'll keep on posting. There is a whole new world here... and someone has to show it ... so others can get to know how it feels. Last thing i asked to Claudia was.. "i have seen all my friends going bad.. in some specific time and heading to hospital bed... all of them... and i am afraid and i don't want that....i don't want to be that close to heaven yet, is it statistically possible that i can be myself, taking meds and never hit hospital bed?. She said. Yes. It is statistically possible, i have several patients living with hiv for over 15 years and they have never hit a hospital bed. And that made my day.

Labels: New life, same illness

Hi there everybody, 8.42am here and i just came back from Social Security hospital after taking my CD4 test.... i have a word to describe it...SHOCKING. I never knew how much this illness might hurt you emotionally... now i am starting to know... you see, i have hiv... and i feel nothing... my body is fine except for the never ending diarreah... but apart from that i am perfectly ok and in great shape, but my heart, my thoughts and my feelings are going throught hard times... i had a bit of a rest... but it all began again.

Yesterday morning i woke up early and got ready for my seminary at Sheraton Four Points in Guayaquil, i was soooo looking forward to it, i am not sure if i haven't told you but i have some fetishism with 5 stars hotels, mmm!!!! they are a big turn on!!! Lol.

This is a pic of me getting ready for the big event and this is another of me getting ready for the big event, yep.... i was very ready!!!

Killer smile huh?

So i left i was a bit late but i still had chance to arrive somehow on time, i was planning to go by buss downtown and then take a taxi cab... and then... shit happened (one more time...) i forgot the entry ticket. Damn!!! For God sake!!! what happened to me?. I took a taxi back home, climbed the three floors to get to my apartment and fallen in the stairs.... ouch!!!... but nothing happened, just some red hit in my hand (luckily i didn't bleed or anything, i don't like to bleed when i go for a nice conference... it doesn't look good, lol). Took the fucking entry, went down and looked for a taxi... Mom called and well... i told her i was late, what a pity - she said... As for me, yesterday morning conference was my award and i would definitely get it. So... despite the few money i have i took a taxi from my house to the Hotel. It cost 6 usd (i could have eaten 2 meals during 2 days with that money.....) but whatever... i felt it was ok, that conference was important to me. Before reaching there.... a big car jam.... damn!!! I was in a avenue with space for 4 lines of cars... how come a car jam happens???

Oh... a car crash... at least it was not me. That would the last thing i need now. Well i arrived, i was very happy and motivated eventhough i was half an hour late (ok now you see there is a reason behind every time a Latino arrives late, it is not just culture... shit happens too!!!). I was taking the stairs to the first floor when i suddenly found a friendly face.... Gabriel Mira!!!!

Well for those of you who don't know, Gabriel Mira is a guy couple of years younger than me and he was financial director of Huancavilca Foundation, an ngo that was taking AIESEC interns quite often during last year. I met him in 2006 i think or 2005 when i was chair of the AIESEC in Ecuador 40th Anniversary Ceremony together with Diana Patricia, it was fun, because i first hated him that night, i was trying to get all guests in their chairs and this guy was fooling around, i sent several people to ask him to sit down... and he was just fooling around again. I remember i though "mother fucker just sit down once for all!!!!" hehehe, after the end of the conference, we got to talk... and that was it.... we made click. He is one of those people that when i start to talk to him it feels we have been friends since years ago... we laughed, made jokes, went to the after party, it was such a funny night and we spent it together. Everybody asked me "have you both met before?", i replied, nope, just couple of hours ago. He is a very smart and cool guy, i have seen him couple of times after that event and well it was already long time without seeing him, so it was cool to meet him again. Although meeting him brought me some side effects i was not expecting, Gabriel is a wise person with big sense of empathy that sometimes he does not know how to control or how to use it in the appropriated time (and yesterday was not the appropriated time) .... when we met we started to talk....

• Me: Gabriel!! How you doing?


• Gabriel: Juan Carlos!! hi how you doing?


• Me: I am doing fine thanks


• Gabriel: Nice, how is life treating you???

OUCH!!!!! ouch!!!ouch!!! that was painful question... the wrong question in the right time. Gabriel should learn one can't ask everything that comes to our minds all the time.... and that wasn't right time for that question. When i told him i was doing fine, i really felt it. I feel i am fine and that's ok, but when he asked me "how is life treating you?" I found just one answer.... PAIN.

Few days ago i said "i think i burned most of my pain in my first days.... there might be some pain left inside yet, for sure, but so far... i haven't found it.". Well yesterday he helped me to find it. I found the other part of the pain that is left inside of me. I answered him: "My life is doing fine, everything is ok". I was lying... and he realised it cause he asked me same question again and again... until i told him, "i told you already my life is doing fine". Although he is smart, we have good empathic connection.. he knew that was a superficial answer, but he would have not wanted to hear the real answer for his question... the real answer to "How is life treating you?" in fact is "Life is treating me like hell, like a big piece of shit. Is kicking my ass all over the place and don't giving me a time to rest, it is destroying all the things i have ever wanted and putting my world and my life upside down and i feel it is a big big crap and i am just living in fucking hell.... yeah, thats how i feel life is treating me so far... ah... by the way... i've got hiv and it is nice to see you". Sorry, i might be overreacting... but that's how i really feel. Is it possible that i feel fine internally and i feel life is treating me like a fucking bastard? YES. Because internally i am trying to rebuild myself and i am trying to create something new, somehow i feel better... but regarding how life is being with me...talking about the facts i have faced since December 06 until now....i still deeply think this i am facing is not fair. I didn't deserve this... i know none does it... but you know... i have tried to be a good person all my life even when people betrayed me, i always wanted to keep my hands clean... i have starved in other countries and still... i tried to make a good work, i have given lot for AIESEC and working for others... and putting in risk my own security and sustainability... and what do i get? A diagnosis of Hiv. It is not fair, it is not just!!! I AM ANGRY!!!! LIFE YOU ARE JUST A BIG PIECE OF BULLSHIT!!!! I HATE YOU!!! I HATE YOU!!!!!!

That's not even half of what i feel... it is true that i want to cry... but i won't do it... won't do it now cause it makes no difference at all, nothing will change.. even if tears are falling down my cheek i am still the same... a guy with hiv... i can't step back, can't leave this behind and forget about it...I can change all my stars but this one.... eventhough some times like now, i wish i could change it all and re start again. If Mr Life would be here in front of me, i would make him feel how is to be hit by a comet until make sure he gets just a small idea of what he has been making me live in this year.... life.. you owe me all this you are making me face, you hear me!!?? you are in debt with me!!!!

I know i failed the test. I mean Gabriel's question (not the Cd4 test, if i fail that test i will suicide!!... ok, perhaps no... lets talk about this later). I think Gabriel's question was a test from God... that specific type of question is not common in our daily vocabulary, i mean at least i don't get people all the time asking me how life is treating me. I know God wanted to see if i had overcome all this, eventhough he knows i haven't. Perhaps he wanted to see if i was able to be sincere with myself and accept i still suffer inside and not to take the common shelter saying "i am ok, i am ok" while you are dying inside. I think and hope God has mercy with me and that he understand how hard this is being to me, i know he does.. God knows me... this is my life and i have no reasons to lie to anyone, cause i have nothing to prove to any of you...NOTHING. This is just God, the hiv and myself. I was told long time ago that the first step toward getting better is to accept the fact you are suffering for something... and yes i do. I do suffer from this pain sometimes. Yesterday night i didn't want to go through this cause it could affect my Cd4 numbers, plus i already got some small flu (i think my lil niece gave it to me together with my Mom sore throat) so that would put my Cd4 numbers low.. but i hope not that much. I expect my Cd4 being at least 600 (min is 350) but the best would be if it is 800!! That would give me some time before starting with meds.... time to get ready for it. Now i am done with the Cd4 i can let myself face and feel the pain still inside of me.... suffer it once more... and then burn it, and throw it away... it is not going to happen all now... i will respect my own times. I am crying for a death person (the old me) and that's never easy.

After meeting Gabriel we got into the Hall for the seminary, and it was crowded... wow.... 1200 people. Too much if you let me say, we didn't reach the hall where the expositor was so we had to watch them through internal video circuit. The training was nice, the expositors were Argentinians and they were really nice speakers, eventhough i would have wanted to get some expositions from Columbia as well, they are good salesmen.

During conference Gabriel and I were making fun, heheheh, it was so funny you know, we were like two kids fooling around, chatting, laughing, bothering each other, he is such a funny funny guy. The we had a nice coffee break, and it was cool, people was eating as much as they could. I needed to eat something cause Mr Probiotic made me feel like vomiting several times... i will talk to you about Mr Probiotics tonight....

After conference was over Gabriel and I exchange phone numbers and he left to his job and i went to mine... but... not before taking some pics about this nice building where Sheraton Four Points functions in Guayaquil, I hope you like them.

Rosa, my co worker didn't attend the seminary, she said she was sick but i think she didn't want to be there. As for me i was very happy after it and went to work full of motivation. I had a good day, everything went fine, i preferred not to stress thinking in any of the things i found yesterday after Gabriel's meeting. I had a nice day and nice night. In the afternoon i got an email from Myriam, telling this

"JuanCa.. where are you? you are lost from my sight!! I am sorry we could not go out when you had free days but i was very bad that Friday and i spent whole weekend with fever and diarreah. I went to see Dr yesterday and she told me it is because i am new with those meds. I am just starting to leave bed these days... i had been very bad, imagine i had terrible pain in my ears, my throat was swollen and with the diarreah and fever i thought i would die. Although... well God is nice and he does not want that anything bad happens to me. Lets keep in touch. Kisses. Myriam"

Myriam is a mature woman (i was told about 40+) who is Hiv poz as well and she is married with a non hiv poz man. I don't know her whole story but i know one thing, they love each other. Myriam is general manager of her own company and is also leader of the "Association of Positive Women of Ecuador". Although much more than that... she was my first angel once i got diagnosed. I talked to a friend of mine from Quito who is member of the "Coalition of People living with AIDS" and he told me to talk to her. The day i was diagnosed first (13/03/07) Myriam spent over two hours on the phone talking to me... explaining me about hiv, how it works, sending away my fears and listening my pain.... i remember of telling her several times "i don't want to die... i don't want to die... i feel lost.... what do i do?" She was nice, she was considered, she was caring, she was a friend.... and she has been with me since then. We haven't met in person so far cause our working schedules are difficult to match, but we talk often. Myriam... i owe you a big part of what i am doing right now, and i want to thank you for being the first ray of light sent from God after the hiv comet destroyed my world. You gave me a hand, you gave me support words, you made me realise this was real (she was the first person telling me... look, you are hiv positive and that's fine.. there's nothing wrong with it), and you made me see and dream i could be even better human being. I pray to God, he will always keep you safe. I know everything will be fine for both of us. And yes... she and Javier (both Hiv poz) are the only friends in town who contact me once everybody knows i am hiv poz. It's nice to see how strong or weak a friendship can be, isn't it? Plus it is nice to know we all believe in the concept of no discrimination... right?. Heeey!!! for second time..... to any of my friends (if there is still any who is yet proud to be)..... i am Alive and i want to go out!!! I don't bite!!! (just when i am hungry!).. come on guys, if you don't want to go out with me i will do it alone... but i will... and you will miss the great chance of having my charming and funny and always desired company :)))) plus... i won't be with you guys forever.. so you better enjoy me now!!!

Ok it is 10am, i got to go cause i have appointment with Claudia in half an hour and before that i have to past through my work, then i will start working at 1pm until 9pm. Later on tonight i will tell you about to day. Lets keep the mood up and make of this day the best one of our lives!!!!

Labels: New life, same illness

Hi, i am sorry i won't blog today.... Many things happened today, some good, some not that much. Tomorrow i will have my Cd4 test early morning (waking up at 4.30am) and i don't want to stress about it... i was having dinner and i just saw they are playing "Men in Black II" on tv. I always wanted to see that movie, therefore i would like to apologise with you all if i don't blog today, need a rest for a while.... tomorrow is going to be a great day (Cd4 test will define if i start taking meds or not) and today there is a great movie. It is not that i prefer a movie to write to you all, i just need a rest. Would you excuse me if i take a break today? I really hope you don't mind. Tomorrow night i will tell you all. Big hugs and have nice dreams 23h55

Labels: Personal

I have several things to talk about today... i tried not to post scientific info today, but it is kind of hard, there are too much scientific words in this... i promise i will try to reduce it.

First of all, Today a new blogger was just borned!!!! My dear friend Javico, just started his blog. Javico is a very good friend of mine since over three years, and was also diagnosed Hiv Poz last year. You can check his blog here Javico (Ecuador) (Spanish only). I am glad he decided to write too, cause first of all he is a great writer, this guy has poet's soul. Plus he is a very deep person that will give us all a different perspective about what is to live with Hiv. Javico has faced hard times but has been able to get over them and i am so proud of being his friend, he is one of those people that once you meet them... you thank God for being so lucky. I also like his address "los amantes de Tebas" (the lovers of Tebas), refers to an small army in the ancient Greek times, an army that was victorious because every soldier fought not only for his life, and his country but also to protect his lover fighting next to him (remember in ancient Greek homosexualism was a common practise). I like that story, plus Javico is fond of reading about ancient cultures and mythology. You all will enjoy his blog.

As for the rest of the day, it was fine, i borrowed some money to try to pay some of my debts, i know it is not smart to borrow money to pay debts, but... well... there is nothing else i could do. Good news today, My boss called me and told me she had chosen the best 2 salesman of this month to send them to a training at Sheraton Four points in Guayaquil, and... i am one of those two!!! Yuppiee!!! Yuppiee!!! who is the master huh?? who is the master???!!!!. I am a winner!!!. So tomorrow and Thursday i will have training at Sheraton since 9am until 1pm and then i have to work from 2pm until 9pm. I know i know... long schedule... but it is ok for me, i like to work... eventhough i know the girl who will be attending this training with me is going to complain...she does it all the time. One day i would like to tell her... shut up!!! Well i am happy, plus i hope i can meet some interesting people at Sheraton, i like to meet new people. I needed to change environment and nothing better than a 5 stars hotel, don't you think? The only problem so far is that i have my cd4 tests this Thursday so it means i will really have to wake up early that day if i want to get my cd4 done and have time enough to arrive to the training on time cause Sheraton is at the other side of the city. Cross your fingers, i am winner i can do it!!.

I had some discussion with my mother again today, she woke up with sore throat and visited a Dr, and she told her she has a son who is newly diagnosed hiv poz. I was a bit angry when she told me, i mean i asked her not to mention it to anyone. Dr told her we both need psychological support and that my problem with diarreah (yes... i still have diarreah... it is going to be a month and a half) is because my intestinal flora was destroyed because of the virus. Dr kindly gave to my mother some medicine about it. Ok, lets define intestinal flora according to wikipedia "The gut flora are the microorganisms that normally live in the digestive tract and can perform a number of useful functions for their hosts. Research suggests that the relationship between gut flora and humans is not merely commensal (a non-harmful coexistence), but rather is a mutualistic, symbiotic relationship.^[3] Though people can survive with no gut flora,^[4] the microorganisms perform a host of useful functions, such as fermenting unused energy substrates, training the immune system, preventing growth of harmful species ^[2], regulating the development of the gut, producing vitamins for the host (such as biotin and vitamin K), and producing hormones to direct the host to store fats. However, in certain conditions, some species are thought to be capable of causing disease by causing infection or increasing cancer risk for the host."

So, since the very first moment i was diagnosed i was told that we all who are hiv poz have our sstomaches exposed and sensible, that's why you have seen on tv many people dying very thin... one of the most serious synthoms a person develops is the long term diarreah. That leads to wasting syndrom or cachexia (Loss of body weight and muscle mass, and weakness that may occur in patients with cancer, AIDS, or other chronic diseases). I know my diarreah is not a good synthom... i know once my defences go down i have the risk of developing this... but so far i am not worried. My diarreah is serious thing but i really think it is just lack of intestinal flora. My Dr at social security requested me several fecal tests to check what is going on, so by May 8th i will know what is going on (long time to wait huh?). In the mean time i was checking about different ways to reflourish my gut, looks i will go for gardening in my free times :) I found i can do it by using probiotics (a live micro organism of human origin that once digested produce terapeutical benefits for the host's health) if i am not wrong that's part of lactobacillus family. I know the blue pic is not very motivational but i liked more this other pic on the right side, where Mr Probiotic and his friend are doing their gardening job (it convinced me to take this medicine). So... i took the first, i will follow with them every 12 hours and lets see how it works.

Back to my mother... i am a bit worried, she told me that she mentioned to the Dr she is having headaches and that she sometimes fears she might not get over her throat infection. I think, she fears of being infected.... understandable i guess, everybody has a big fear about this (now you see the effects of the lack of correct education about hiv... ) but it is unreal. There is no way for me to infect her, we can share spoons and even with it i could not infect her. Although there is too much bad info on media, i think she is afraid... of me. That's sad.... i am not a monster you know.... i am not. I think she is becoming hypochondriac (A person who has hypochondriasis, a disorder characterized by a preoccupation with body functions and the interpretation of normal body sensations (such as sweating) or minor abnormalities (such as minor aches and pains) as portending problems of major medical moment. Reassurance by physicians and others only serves to increase the hypochondriac's persistent anxiety about their health). I asked her again to meet Claudia and she refuses, she thinks i am the one needing help, not she. I accept i need help and i am receiving it, but she is not happy with my psychologist, nor with the treatment i have received in social security services. Well... i mean i know things go slow, i know they don't have materials nor all medicines... but THAT'S ALL I HAVE. I can't afford medicines by myself, so it is better not to complain and do the best with what we have. She still told me that i needed another opinion, ok, that's fine... who will pay it? cause i am broken.

Mother asked this Dr she met today if she could attend me....i mean... come on!!!. I don't have flu... i have hiv!!!!!! I can't go to any Dr on the street to ask, hey... can you treat me?. I believe (oh my God i really believe!! and hope not to be mistaken) that social security Doctors are specialised in hiv (eventhough specialisation about it in this country would be a miracle....) but i mean they are treating so many people, they must be experienced. I don't want to risk myself more. That Dr told my mother she can work with me by using healing energy... and music and so on... ok, lets clarify this. Alternative medicine (natural and spiritual) is also useful in hiv cases, basically in terms of rising your Cd4, but what is advised is to follow it together with normal treatment based on anti retro virals medicines (ARV). So far i am not in need of any of both, plus i can't afford them. I know my mother is confused, worried.... but she has to calm down....she is making me worry about her... when i should have no stress. Javico advised i have to demonstrate her how good i am... so she will not be worried. Another thing to do in life.... now i will become a performer! why people don't let me be myself? why do i have to prove something to someone all the time? I don't need to prove anything to anyone!!! but i will show my mother how good i am because i love her.

And to finish... i had sex again. (not bad huh?) Off course, it was safe and with someone who knew my hiv status. In fact it was with someone i dated long time ago and whom i used to meet from time to time. This person is one of those people you meet and drives you crazy... hot body, brilliant mind, good heart, nice voice, nice hands, suggestive lips...... i always liked this person. I have to admit i felt something or perhaps feel something every time we meet, but this person doesn't feel the same and told me several times. Then, i accepted to meet this person for going out and casual sex from time to time. Today was one of those times, and sex was fine... actually very good. Although i ended up unhappy. I mean... many times in my life i accepted things like this... to be with someone who just desired me sexually but not loved me... and it was fun, for sure it was... but didn't bring me anything good at the end. When sex was over today, i felt myself guilty, silly, stupid... like if i had failed to myself. I mean i am trying to recover myself, my own self-steem... fighting to be respected by others.... why don't i respect myself a little bit? why did i accepted to be used as a sex toy?. Off course, men never think like that... or better say... never think. I was like that, but now i am tired of it. If i will have sex, it will be with someone who feels same i feel, i am not a saint... but i will try to never be with someone i love but who does not love me, it's not right. I will respect the new myself.

I know you don't understand all things i say, take into account it is also about the cultural settings we have, so that's ok. I just wanted to point, sex for me now... is a different thing. Ok gotta go.. tomorrow training starts very early, that's great!!! wait for some pics!!.

Labels: New life, same illness

Something you all should read.... taken from Here

For more info, please visit www.vihda.org.ec the foundation where i assist. I don't want to scare you, but you better be informed.

---

Current situation in Ecuador - 2006

Ecuador appears to be on the verge of an explosion in the HIV/AIDS epidemic. A report published by UNICEF last year compared Ecuador's infection rates to those of the Caribbean and Africa fifteen years ago, suggesting that without intervention Ecuador's rates in less than two decades will rival those of the present day Caribbean and Africa.

The response from Ecuador's public health sector has been limited and erratic due to the political instability of the last few years. It is therefore necessary for civil society and its representative institutions, as well as NGO's, to get decisively involved in the fight against HIV/AIDS to prevent an epidemic that will profoundly harm many Ecuadorians.

In this spirit, a group of entrepreneurs, students, medical professionals, members of the press, and other citizens created Fundacion VIHDA in June 2006. We are dedicated to preventing vertical (mother-to-child) transmission of HIV and to assisting women and children living with HIV, as well as their families, to have access to medical, psychological and social services available in our country.

We want all Ecuadorean children to be born free of HIV. HIV tests must be available to all expecting mothers so that their doctors can take the appropriate medical measures to avoid 98% of vertical transmission cases, including transmission during pregnancy, birth and breast-feeding. In addtion anti-retroviral therapy must be available to mothers and newborns and delivery by c-section is necessary.

The urgency for Ecuador to implement health policies against the spread of HIV can be illustrated in the following examples, information and statistics (see attached graphs):

For all these reasons, Fundacion VIHDA will support all public and private institutions willing to provide counseling, testing and medical treatment to all expecting mothers as part of their pre-natal care, as well as assist women, their children and families to have access to appropriate HIV healthcare in the future.

Finally, Fundacion VIHDA hopes to open, by the end of 2007, a health center where we can provide medical, psychological and social assistance to people living with HIV/AIDS, including a lab with the proper equipment to conduct the relevant tests to help people remain healthy.

We appreciate any and all help from private and/or public institutions that can assist us in know-how, funding and in any other possible way in this undertaking.

Labels: same illness

It's a beautiful day... yep, it was.

I have free days today and tomorrow, wow... it feels so good...mmm.... stayed awake until late last night and woke up at 9am. I had to deliver some stuff to work and was getting ready when my mother told me that my godmother invited us for lunch. I though there is something going on there.... i think she knows something.

Well i got dressed and though... come on it is free day, i can dress the way i want... so i did. Before, when i was younger (nowadays 29 years old) i loved sport clothe, i have always been sport kind of guy, love swimming, jogging, basketball, chess (it is an sport as well!) and well.. i guess it is good to say i am green belt in Judo. That's why i have been always healthy.... well.. mm until now. The thing is that i love to dress sporty, and i love to walk and walk and walk, it makes feel alive. Co workers were very funny today and said i was looking like boy scout, lol. To be with these guys is always so funny :). Here two pics of me.

During morning i talked to Javier one of my good friends since over 3 years ago, who discovered he was hiv poz 3 months before me. When that happened, he decided to be away from me and didn't let me know his situation, he faced hard times... he was in hospital for some time, ... i don't know the whole story, but it seems he was very close to die. Luckily and thanks to the medicines, he's totally ok now. He keeps on working as an University teacher, looks a bit thinner now, but everybody is behind him :) His health is stable, he is under treatment and i have seen this change in his life has been for good. His family supports him, and now his relationship with mother and brother is so good and strong, not like before. As i have said before, virus development depends on every person, i think that Javier realised he was ill when his viral load was very high, that's why he was in hospital under intensive care, he might have not realised when his seroconversion happened, as i told you before... it seems to be just flu.. a bit aggressive and then you think it is all ok, but it is not... and when people do not take periodical hiv tests (at least every 6 months) you can't identify the illness.

As for myself, my last negative hiv test was about a year ago, so i "assume" this is recent and every time i say so people tells me "God blessed you!!". Yep, i am a winner, a lucky winner. So far i think i am ok, don't know my Cd4 but i think i have it a bit high, i know... sometime i will touch bottom, and my body will fail... but i don't know when... but what i know is.. when that happens, i know medicines will help me. I didn't take hiv test every six months cause i was scared about this illness like most of you..... and every time i took the tests was a nightmare.... and i always promised i would change my way of living... but then i just decided to avoid thinking about this illness... that was wrong, if i would have understood better how important was to play safe, i would have saved my life. Now i want to save other's life while saving and enjoying the new life i have received.

So.. back to the story, well... after work i went by buss to my Godmother's house, i had a trouble in the buss... here in Ecuador sometimes there are some people with bad faces jumping in busses and you know... talking like gangsters.. and "asking" you "nicely" to buy them candies. Sometimes if you don't buy them... you get robbed, or insulted or anything. I was unlucky cause they saw me talking over my mobile with my Mother so i was risking to be robbed. I decided to buy a candy, but i had no change (and had few money in my pocket), they didn't want to give me change.. and i complaint: "i want only one, give me my change". They looked at me and said something i didn't understand and thrown the other candy to me and left... i was so angry... come on they left me with one single dollar in my pocket. I was pissed off, and i though "i should have told them... give my change mother fucker or i will infect you with hiv!!!" Lol, sorry if you don't find it funny but i do :) lol!! i can imagine their faces, confused... scared.. as well as the other people in the buss..... but i don't think it would have worked anyways... plus, Hiv is not like a gun, i cannot shoot it just like that (if i could it would be a very good defence against thieves, lol!!!). The true is that even if i cut my hand and put my blood on one of those guys hands, they would not be infected (unless my blood touches a recent hurt they had). Hiv virus dies almost immediately once exposed to the environment. That's why the only way of contagious are:

1. Unprotected sex - that is, sex without a condom.


2. Blood-to-blood-infection when using a contaminated needle or through transfusions of contaminated blood. Today, in most of the countries all blood that is donated is tested for HIV so this route of infection is extremely unusual. Although... in Latin America, this still happens.


3. Mother infecting her child. The child can be infected during the pregnancy, during labour or, after the delivery, through the breast milk. That's why all mothers should be tested during pregnancy.

Those are the only ways of contagious. So as you can see... i can't shoot hiv like a gun against thieves... that's so bad :( Lol!!! Well, we went to my Godmother's house, had a nice lunch. ... but there was something out of place.. i mean since the very first moment they saw me... there was this... strange way of watching me, somehow like guessing "are you ok? are you feeling right? poor you.... pity this happened". I haven't asked my mother, but i think she told them. I asked her not to tell to anyone, but in this case if she did, it is fine. Three weeks before i was diagnosed, mother told me that the husband of the daughter-in-law of my godmother was hiv poz, it seems this guy was really in big troubles and even felt in comma. One more time, medicines take him back with us on this earth. So glad medicines work!!

Funny thing is that two months ago, there was almost none in my world with hiv (apparently) and now that i am ill.... i just realise Hiv is all over the place... all over the city. Don't be naif!!. I even heard a mobile phone conversation today, while downtown where this guy talked about someone with low Cd4!!. According to statistics my city is the one highest number of infected people (diagnosed) in the country, now imagine those who are not aware of being infected and keep on infecting others??? You can infect someone since the moment you were infected, that means before you become seropositive and before your hiv tests show the infection inside of you. One more time... safe sex is not optional guys.... got it?

Well, we had lunch, they gave me some juice made of a special sort of tomato (very typical in highlands) and that was like a bomb in my stomach... ouch!!. I also got a phone call from my boss and i had to met her downtown so i had to leave... and when leaving... my godmother and her mother (who is someone i dearly love like my grandmother) came to me and asked "do you have money for bus? if not take this... it is fine". I had only one dollar in my pocket but i didn't take it... i mean... they had never in their lives offered me money.... there was something going on, they knew something.

Well, went downtown, solved the working stuff, met a friend and met an alumni and you know chatting for a while, social life that i haven't had in long time, then went with Mom to my sister place and played with my nieces and then came back. In the way back.... i decided i would give a gift to myself and my body. "Tripa mishky" also know as "tripita"!!, Mmmm i know i am not supposed to eat outside because the risk i have with food badly cooked, but come on!! once a year... it is not bad!!!. You know... i am a good guy, very nice person, and i am trying to change the world... come on, let me eat a bit!!!

Yummie yummie, it was tasty tasty thing. Tripita is very typical dish in Ecuador, mostly sold and prepared by aborigens, but it is sooooo typical like the hot dogs in the streets of NY. Tripita is made of roasted cow's guts (i assume) and you eat it with your hands (exotic huh?). That was my day, in the night i talked over with Javier again, he told me he is feeling down sometimes... missing his past life... and off course he worries about his defences going down.... (later on i will explain you the relationship between motivation and cd4). I told him, about how i have handled, i mean... we have to have the time to suffer for our big lost, to lose your life and your health forever is the biggest lost a person can have... sometimes you feel like an stranger in your own body, like someone who died .. but is still here... around others, but without being part of the "normal" world. As for me... i think i burned most of my pain in my first days, and i was very sincere with my feelings... that helped me to let them go.... there might be some pain left inside yet, for sure, but so far... i haven't found it. The reconstruction process of my new world is keeping me busy and happy. I like to create!! or re create in this case. As for him, i advised him to burn all his pain and do the changes in his life he feels he needs. And not to try to solve all stuff immediately, to go one by one... after all... we have a long life ahead to solve all of our problems. I made him promise me when i just got diagnosed, he would live until 100 years old, and i promised him the same.... and i always fulfil my promises. ALWAYS. I know he does it too.

Hope you all also had a great day, good night.

Labels: New life, same illness

Today i wanted to have a day without Hiv, a day where i didn't have to talk or think about it. We all need a rest about this topic, don't you think so?

Unfortunately i could not, since yesterday afternoon, i am having some troubles in my face, some small lacerations. They itches a bit and while trying to calm them i ended up making them more red and visible. First one was yesterday in the left side of my face and today another one in the right side of my face. I got worry.... i asked couple of friends if it could be the beginning of something... i mean, they are appearing in my face... if so i have to control them fast!!

I was told that they are NOT related to hiv. You see how paranoid WE are? Lol!!! Oh come on, lets not be silly, not everything that happens to us has to be related with Hiv. These lacerations are placed down my bear so it can be that due to the hot weather my face was irritated and while itching i just got to make it red. That's all, you see... we have to lose our fears hehehehe!!!.

The rest of the day was fine, having fun with my co workers at work, went to vote and had very good sales today, was a good day, good good one. I just had a trouble at night.

I told my mother about my disclosure on internet. She wasn't happy.... well... i guess it is not normal way to disclose.... mother asked me.. "what if your sister reads your blog? you know sometimes she does it"..... and i felt afraid, my sister does not know about my health condition. Or perhaps she knows already but don't want to let me know... i haven't told her cause i think she might be afraid... and might not understand it, and then i could have troubles to see my little nieces and they are like my daughters, i love them a lot. Well... Carmen, if you are reading this... i am sorry i could not tell you in person, i wasn't ready... i mean, i am not ready... i know you have always been proud of me... and i wasn't sure how you would react, plus i know that people without much info about this... might feel a enormous fear. I wanted to avoid it, i am still the same, your younger brother...

I tried to explain my mother, why i am doing this, i am trying to let people see how this works from the other side. I might have never known all the things i know now, or i would have never ever appreciate how important to share this info is... if i wouldn't be in the position i am now. And i know none can understand me, but i want to open the door of my new world and let you see what it is in. It is not so bad.... it is hard, oh yeah it is... but it is not all because of the illness... it is mostly about you....the way you all deal with me, with us. That's what makes hiv people lives miserable. I am not used to be miserable eventhough i have faced very hard times in life, I am winner, even when i lose i always win. Plus many hiv people consider themselves "survivors" and i also hate that word, cause i have nothing to survive to...i didn't have a car accident, i am just ill. It is a serious illness but can be controlled. So i have no reasons to survive, because what i want.. is TO LIVE. I am a winner who is living its life to the fullest, that's what all hiv poz people are. Many people in the world chose suicide for smaller things than this, or feel miserable for stupid things of daily life, and some others just get depressed for whatever happens to them, but we are NOT like that. There are thousands, perhaps millions of us, who are living with hiv, who are fighters and winners... we defeat this illness everyday, we get over our fears at every step we do, we face our world despite how hard it is (and how scary it may look when we look at the mirror), we win to our fears daily and will win to your fears too, and we will defeat the unjust discrimination some of you and many others have toward us, because it is not just, it is not ethical, it is not justified, IT IS NOT HUMAN. We are winners and fighters and will always be. And even the moment i die, i will live again (because of my faith in God) and i will once again defeat the death. That's it, i don't like to be discriminated so when i got into this world, i said... i don't like how it looks like... so i decided to change it!!!. "Be the change you want to see in others"

I was telling my mother how wrong people perceive us, i told her "People think that anyone with hiv will die thin, miserable and in terrible conditions"... and i got shocked for what she told me "it's because that's the way they die...". And i got angry, pissed off, furious... how come?, i mean... .. hello? you are talking about ME!!! Why none thinks before speaking????(that's another way of discrimination). I was angry and i acted a bit aggressive and asked her not to say anything else. Her words put me down, i have the faith it all will be ok, but it seems she does not. I don't care if i am daydreaming thinking it all will be fine. I have faith (Faith is to hope for things which are not seen, but which are true (Heb. 11: 1; Alma 32: 21). I took some time, and then went to the table and talked to her, and said: "Look, i don't care what you believe or not about this illness, but i am fighting for my life and your words does not help me. I still believe that it is all going to be ok and i will fight for it, so please save your negative words or at least analyse them before speaking". She answered "i was not talking about you".

I didn't reply to that, cause i think she has not understood that it really is about me. If you say something about any hiv person in the world, it is about me too... because i feel same they do. We are close now, cause none else can understand us... and sometimes there is none else open to talk to us and to listen to us... you are all closed in your paradigms while we fight for our lives... and i hate that, also.. come on, lets be sincere, for you any hiv person is same as the other. Most of you are not seeing faces, nor realities, nor how smart these people can be, or how hard their lives are (something you might never imagine not even in your worst nightmares)... for you it is just another person with Hiv. For most of the world, any person with hiv is just... that... hiv, and that's wrong... we have to eliminate Hiv, not the people suffering of it... wake up!!.

We have feelings and faces and we support each other. There is a story behind all hiv faces on the world, sometimes stories are simple, someone careless, sometimes stories are hard... a poor mother and her children, but those stories cannot be seen as statistic numbers, because you stop being human if you do so.... are you a computer? don't you understand we live in the same world? and we need your help, as much as you need ours. Our help to teach you how to stop this fucking illness and how to re gain the sensibility of a real human being. What keep us alive to stay together while the rest of the world goes away... and i am open to change that, i want that what keep us alive is just to "stay together", wasn't it AIESEC all about that? no discrimination? black, whites, red haired, Muslims, Christians, catholic, Americans, Africans, Latins, HIV poz, HIV negs, people suffering with cancer, diabetes, and so on... It is all about it, and i believe we can make it true.

I have asked my mother to take time to talk to Claudia (psycho), i know it is not easy for her to understand all this, and she tries to be strong... and not talking to anyone, she refused meet Claudia for a 1 to 1 session, but i think she needs help to understand and assimilate what is happening to me, so she can really help me.... i know we all want to seem to be strong, but there are no heroes in a war like this one. There is no need of them.

I promise i will have a day without Hiv, some day....

Labels: New life, same illness

Hi, things are going sort of ok with me these days, not totally fine but i try to let things flow...

Banks are calling me for my debts, and eventhough Claudia (psycho) told me i cannot stress cause that pulls my cd4 down, i told her "I can't avoid it!! Banks call me everyday... i just can't stop thinking about it, i feel tired". And she said... "Those are God's twisted paths".

Not sure if you are familiar with that phrase, it means that sometimes God takes you to the right place... through the wrong paths (which are wrong in your point of view but are right in God's mind). So i am walking my long way home... might not be the shortest way, nor the easiest way, not even the most pleasant way... but it is the way i have to follow... and he made sure i can't step back... wherever i go.. i am still here, in this new world. Sometimes like today... i wish and desire not to have to walk this way and miss my past life, eventhough my current life is not that different... i felt different, and felt better. And i try to send this thoughts away very fast... cause it is useless to dream with something you won't have again.

So.. i was thinking today, that the effect of this illness in my life will actually follow the effect of the virus infection in my body. At beginning is a mess.. and it reaches high points and then it starts to go down and down until stable. Let's talk about "seroconversion". Sero what???? hehehe it was same thing i said. Once you are infected with hiv, your body takes times to realise the virus is present.... usually 3 months and in some cases 6 months. During those months virus is undetectable to any fast hiv test. The conversion or mostly known as seroconversion happens when the infected person with undetectable virus load... become hiv positive as a result of virus copies amount rises and rises inside of you. Seroconversion can't be planned, nor expected... time changes depending on every patient. Eventhough there are ways to try to prevent the Hiv infection after you have had a risky contact.

OK, i know you want to know this... If you are a person who thinks might be recently infected with the virus, there are some medicines (PEP - Post-exposure prophylaxis). I will post some things i found over internet:

"HIV PEP (post-exposure prophylaxis) is a combination of anti-HIV medications given to prevent HIV infection after potential exposure to the virus. HIV PEP has been recommended to prevent transmission of HIV following non-occupational sexual exposure (Centers for Disease Control and Prevention, 2005), but available research and guidelines to practically implement this recommendation are limited and have often been inconsistent." Women's college research institute

Other link Health 24 - Disease Prevention

Regarding Ecuador's situation there are few things to say about this. 1. Few people knows about this. 2. I am not sure if such medications are available for PEP. What do i mean? Well, guys... anti-Hiv medicines are very expensive, we are talking about 300 usd or 500 usd or even more per package of pills (30aprox). So.... it is not affordable. I know there are medicines available within government programmes, but i don't think they will give it to you for Pep (i know nothing about it.. to be sincere). Why do i think they will not? First medicine is expensive and is never enough for all patients, so they prefer to give it to someone who is really ill... than someone who might be or might not. Plus the only way to get this medicine from government is to join one of these Hiv programmes... and to join these programmes you have to test positive for Hiv twice (they made two tests on you). Until you finish those tests... it is already over a week after you exposition and PEP only works if it is given in the first 72 hours, and preferably in the first 24 (according to an American Dr i talked over internet). Still with it, if you think you might be recently exposed... don't believe in what i say about PeP, go and contact "Instituto de Higiene" (Government health institution in Ecuador) and talk to the counsellors, they are those who get you into the Hiv government programmes and they can tell you if help is possible or not. That's whole truth. Welcome to the third world.

Ok, back to the seroconversion... well it might lasts few days or a week, and it is not possible to stop it. Synthoms are same like aggressive flu, fever, headaches, sometimes vomits, diarreah and so on... during seroconversion number of copies of the virus becomes really high in your body and that causes all the illness, as you are not weak yet, your body recovers with help of few medicines and synthoms disappear. Viral copies go down, your CD4 rises and you keep on living normally.... except from the fact that since that moment you will test positive for HIV tests. It happens sometimes that people think it is only flu... without reason... and they don't get to learn it is seroconversion until their Cd4 is very low and opportunistic infections start to happen. In my case, it was almost like that... suddenly i got fever one night, and following day... then headache, then vomit and diarreah, then lost appetite, and throat infection..... and being a person who usually never gets sick i though "God... what's this? am i going to die?". As i knew i had been in risky situations... i decided to take the hiv tests after i felt a bit better... and now i am here. After stable period... that might last months or even years (in Ecuador an average of 5 years) person without medications start to suffer a low level of Cd4 and if you don't get medicines fast... you develop AIDS due to opportunistic infections in you .

I think Hiv illness will follow same process in my life, its impact will be high at the beginning and then i will start to get used to it, until it all feels more stable. Today i talked to a friend and asked him if my waiting time until my appointment with Dr (with Cd4 results) wasn't too long cause that appointment will be almost two months after my first diagnosis. I mean... i have had to wait TWO MONTHS to get to know how i really am... when in other countries you get CD4 and Viral load tests INMEDIATLY. He told me it was actually fine since i don't have troubles with health. I felt better. Today i also disclosed my status to a very good friend of mine... Diana Patricia, she is living right now in Germany working for Bayer Labs, and will be back to Ecuador a bit before mid of may (few days before my birthday!!). We haven't met online often... but it happened today and i knew i had to tell her, she is very important person in my group of friends. After my disclosure she remained silent... and then said "Oh my God!!" and i told her "that was exactly same i said". She managed it well, she is a well educated person and well... i hope our friendship will be same as usual.... and Diana.. once you come back, we have to go back to eat those tasty big hamburguers downtown!!!!!! Yummie Yummie!!!!

Well as for the rest of the day.. it was all fine. Work was fine, everything at home is fine and i am very optimistic about these days... i think and feel good things will happen (wasn't it time, huh??). Tomrrow we have to vote for some reforms in our constitution and to say true.... i don't give a shit about it. It is not politics what will make of this a better country, it is human behaviour, human sensibility, lot of work and the destruction of paradigms.

Last thing to say... is a request, it is a favour...pass the voice, don't let this info go to waste... speak about it, write about it, say something, do something. Also ask you all to please respect my privacy and save my name and identity. This is my life remember, not a movie on TV. This is important because, I am actually exposing myself too much doing this, i risk my work, my life and i risk to suffer the discrimination i am trying to fight. I want to help but i have no intention of becoming a martir nor a hero. I just want to be myself in a world where i can see less fears in others suffering with this, our inner doubts/devils are enough. I also want to live in a world where i am seeing as who i really am ...a human being, not like the worst thing on earth. I want to live in world with less Hiv. Help me, please.

Labels: New life, same illness

Today was another nice day,... hey this is going really cool!!. I went to deliver my samples in the morning early yet, and i had time enough to walk from hospital to metro station (about a kilometre) then went downtown to Alegro PCS headquarters for training and i arrived just on time. Perfect!!

Training was ok, we as sales people didn't really like the changes made to our current offers... but well... we are not at top of the Alegro PCS evolution chain... so lets just accept how things go. Then my co worker Rosa invited me to have lunch at her house (off course accepted i was almost broken), talked to her parents, watched some TV, it was nice. Then back to Work. It was a calmed day today, not much people... so we took chance to download some videos and make our own karaoke at the store. I love singing!!! It was a calmed day, i got a phone call from a good friend, it was nice.

I noticed something... can you believe that since i got ill... i haven't seen anyone else than my mother, co workers, my psychologist and a good friend also ill with hiv?. Looks like i really moved to another world, and my friends in town didn't move with me there... so, just in case.. if anyone reads this... i am still ALIVE, kicking and up for going out, a coffee would be so cool. I can pay mine so don't worry lol.

Talking seriously, i was thinking today about the changes... small changes i have made in my life, to help me to adapt to this. You might think they are silly but truth is... so far they are important to me. Take a look and i hope you like them.

1. I hate the word "positive". Yep, since the very first day i was diagnosed. I just can't stand it anymore... that word lost its good meaning for me. If you tell me nowadays "be positive" i will answer you... "i am already positive you know?" (black joke). Truth is whatever context you use that word, the only thing you are doing.. is to remind me i am ill. To remind me that i am HIV positive. So, now i prefer to use the word OPTIMISTIC. If you could use that one with me instead of the other, that would be a big help. I know it is something silly... but well... it would help me out.


2. I am on diet. Well this was not my decision, i am not good for diets but since my stomach is weak and sensible i was suggested to. So at this time i am not eating raw vegetables, nothing made of milk, try to avoid fat food, and try to avoid grains. Eventhough i have to admit i can't leave mayonnaise.. but i am trying!! Good news is that diarreah is gone... but it comes back from time to time. I think that it is only that my stomach is weak right now. That's all.


3. I have decided not to share drinks. Let me explain this, in Ecuador when you go to a party with friends, we usually share a single bottle of beer among all of us. That is actually safe guys, it is impossible to get infected with HIV that way, even if i share beer bottle with you, you are NOT in risk. Although I AM. If any of you has flu.... i will get it. Or whatever illness you have... i will catch it. Plus.. i was advised not to drink beer, not to smoke since i am under medications. Ohhh... so since now and on... i am a non alcoholic :) needles to say i already was, lol.


4. I am out of sex arena for a while. Let me also explain this... even after my diagnosis, i was told by DOCTORS i can keep on having sex if i want to, BUT i have to do it safely. And that means not only condoms usage, but some other safe measures i need to follow to protect myself and the person who is with me. More info here. Off course i understand this is a sensitive topic for everybody, because this is one of the few possible ways of infection. Still with it, there is too much shadow above this. Let me tell you that it is possible to have SAFE SEX with a hiv poz person without risk of being infected. Didn't know it? well now you do. Plus, you can also check Shawn's story, and Shawn's HIV Blog (he is such a funny guy!!!), also i know an Ecuadorian couple made by a hiv + woman married with a hiv - man, and they are so happy, it really happens around the world, it is time for you to open your eyes and your mind. I will explain more about safe sex later, now let me explain you why i am out of sex arena. After diagnosed i had three attempts of having sex, two of them were a disaster... not because of me, they were just the wrong people, so sex never happened. I had sex SAFELY with one person and it was nice, i liked it but not enjoyed it. why? well i was protected, but then i though... "if i would have done it like this before...." doesn't sound nice huh? and it does not feel that way... believe me. So when i am horny, right now i prefer to go for self satisfaction... if you know what i mean ;). A friend of mine told me he faced the same, and that after several months he felt ok to have safe intimacy with others... we'll see.

Now, lets talk about sex... i know that's all what you want to hear about, Lol!. The only sexual way to get infected with HIV is while practising UNSAFE SEX. It was my case, so i beg you to pay attention on this. I know we sometimes skip protection when we are with someone we love and all that... but you know, that person could love you... and still be infected, and not knowing it. And even if you both take tests, you should make several of them during a year or more to be really sure you both are clean. Plus... come on guys, lets be clear... fidelity in this world is almost death (and it wasn't hiv's fault!!), i know you could be really reliable, but are you 100% sure of your partner? current and past life? If you tell me you are 100% sure... i would advice you not to be. If i could have the chance... to go back in time... i would have never ever had unsafe sex with anyone in the world... NONE at all.

Something very important for everybody to know is that one of highest growing groups of infected people are housewives. They get infected by having unprotected sex with their husbands. Now you see what i mean?. Protect yourself, you can only be sure of yourself, don't be "sure" about others... don't do my mistake, please.

Well, I also need to have protected sex not only to prevent myself of infecting anyone else, but also because if i don't, i can catch any illness from the person i was having sex with. Lets say, if i had sex with person x and this person has ... Herpes or any other STD (sexual transmitted disease) i could get in big troubles, cause i am unable to fight it.

Mmmm i understand you all might have mixed feelings about this right now, so i prefer to tell you places where you can find more info.

• Aidsmap: Safe sex


• Poz Magazine: Positive sex


• Project inform: Safer sex guidelines

One thing important is, I don't need to tell anyone i am having sex with about my hiv status, it is not my obligation. Disclosure is my own right and i decide when to do it and when not to, but my personal commitment is not to infect anyone else. That's MY personal commitment, i can speak on my behalf, i can't speak on behalf of other hiv + people that i don't know. So don't expect that anyone comes to you and disclose right before jumping in bed... it does not happen. PRACTISE SAFE SEX ONLY!!!!

Plus, just let me clarify this... protection is EACH ONE OF US RESPONSIBILITY. The hiv + person is not responsible to protect you, got it??? so my dear friends, learn to be wise, to play safe and not to blame others for your own negligence and mistakes. IT IS YOUR OWN RESPONSIBILITY TO PROTECT YOURSELF. Got it? then record it and use it!! It will save your life. I swear.

well... 3am here, never though that talking about sex would take me so long. lol. Rest, don't be paranoid, it is just matter of being cautious. Open your mind to the truth, the truth that infected and non infected people can fall in love and live together and be happy, the truth that you can have SAFE sex with an infected person without risk, and the truth that YOU ARE THE ONLY RESPONSIBLE FOR YOUR OWN PROTECTION AND YOUR OWN DECISIONS. My advice.. safe sex is NOT optional, it is a must. Peace & Love.

Labels: New life, Personal, same illness

Calmed day today. Glad of it!!. Yesterday night i could not sleep much, got insomnia thinking about today's tests. I usually never had insomnia, but i have had it twice this week. I wasn't the only, Mother called me around 3.15am to wake me up (we had agreed it would be 4.30am). After her phone call i went to sleep and she called me again at 4.30am .... Damn!! fucking tests!!. I though... lets rest until 5am but i woke up at 6am. Oups... a bit late, so i prepare for the exams took the samples and went there. Luckily i am not far from hospital, something like 15 mins away. This is a pic of me before leaving.... and yes, i have gained weight, i gained 4 out of the 6 pounds i lost. Not too happy about it!

I arrived at hospital, searched the right door for taking the exams and i had to make a queue. There was a good number of people waiting to take all sort of exams, i was wondering how many of them would take hiv tests or more specifically CD4 test.

Ok, lets talk a bit about tests. As i assume you all know, HIV is an illness that destroy the defences in your body, in fact it is the only thing the illness does, and that means none dies because of Hiv or Aids. People die because of other illness, called "opportunistic infections". Those can be flu, tuberculosis, minor infections, and even cancer. Funny because i am not a risk for you but you are for me. I can't infect you with hiv while talking, but you could give me flu and if i am weak that could be very very risky. So i should be afraid of you, more than what you should be afraid of me.

One more point, to be HIV positive is not the same as having AIDS. Hiv positive (Hiv +/ Hiv Poz) is a person who is infected with the virus and might or might not show synthoms but his/her immune system is still fighting the infection. AIDS infected is a person who has Hiv virus in a very advanced level, with very low level of defences, it causes this person to show synthoms or being affected by two or three or more opportunistic infections. Once again, all this can be prevented and even solved with medicines.

So back to the tests, as it is my first time i was requested all the normal tests, blood, fecal, pee (sorry but i am not good yet in medical terms in English). Plus there are two specific tests that HIV poz need:

• CD4 Test: CD4 or T cells are part of our defencive system, they are those mainly affected by HIV virus by reducing its number. CD4 cells are supposed to be reproduced in high amounts when an infection attacks our body, when Hiv virus attacks us, he modifies our cell's ADN so instead of producing CD4 cells our body start to produce fully functional copies of Hiv virus. Minimum level of CD4 in a person is 350. This tests counts the number of CD4 cells in blood.


• Viral Load Test: Same like the previous one, this tests count the number of copies of Hiv virus in our blood. The higher the number, the worst condition you are (weaker). There are some times when your viral load remains undetectable, that does not mean you are totally healthy, it just means copies of the virus are so few that they can't be counted. This state is usually caused by medicines, but if you stop medicines once you are undetectable... they start to reproduce again and with resistance to the medicines you were taking.

Both tests are actually very expensive here in Ecuador and they are mostly non covered by government programmes. A person should pay around 200 usd to get both tests done once. Luckily social security services cover the costs of CD4 tests, which is at least useful for a first diagnostic. In other countries both tests are supposed to be taken every 3 months at least... here in Ecuador due to the costs, people take them twice per year (in good cases). It opens a big windown for the virus to expand, this is not a problem if you are on meds, cause your virus is under control... but for guys like me... well... i risk of not knowing what is going on inside. That's why Drs watch your synthoms for some time and then they sort of calculate when you should start taking meds.

Well, today while making the queue i was wondering how many people there could be suffering what i suffer. A Dr came and was checking all of our exams and they said, yes you can take this test now, there are not reactives for these tests and then... he suddenly said loudly to a black woman: "You are going to take CD4 test, right now we are unable to do it cause the don't have reactives, you can take all the others but about this one you have to go to talk with Dr Villao". I was afraid and ashamed... you know he said it loud!!! Come on, Drs should be more discreet!!. Then i though...mmmm... well most of these people might not know what is CD4 tests anyways so it is not such a big deal, when my turn came.... i must have had such a face of terror that he behave nicely with me. ufff!!! what a luck!!!

I watched this woman (pic)... and i felt identified, i wanted to talk to her and say: "Hey you know, i also have hiv, it all will be ok!!". Although during my first week i realised that many hiv poz people don't like to talk about it, they are so afraid, and society has made them feel ashamed of its illness and about themselves that they really want to hide it, the fear is so much that some of them might react aggressively if you ask them about it. Plus i am not good in approaching people i don't know... i am mostly shy.
I also had other questions, i mean i need this CD4, what do they mean when they say there is no reactives? and if i die? and who is Dr Villao by the way?.

After the first check in, we went into another room, where you waited until they called your name to take the tests. Then shit happened. They didn't accept my fecal sample for the fecal test. Oh Holy Shit!!!. They said that for a coprocultive (whatever it is) i have to bring it in a bigger recipient and bla bla bla, so i have to shit for them again tomorrow morning. :(. After that there was a place next to this woman i had mentioned previously... and i was afraid to talk to her... she had strong gestures in face... the face that someone who wants to protect herself. I took a seat and said:

• Me: Hi, can i ask you something?


• Woman: what? (looking at me confused)


• Me: Well, i have to take this test (and showed the order) and they say there are no reactives... so... what does it mean? what do we do? have you taken the test before? how is it? this is my first time. (Looking nervous)


• Woman: If they don't have it, you have to go to talk to Dr Villao, don't you know her?


• Me: ... actually no, it is my first time... where can i find her? where should i go? will she take the tests to me?


• Woman: she is in the other side of the building, at emergency lab. After finishing here, you go there and talk to her, she will tell you when you can take the test.

That was all we talked, and i felt better and i think she also was... she was not alone in the world anymore. I understand her, and well.. her experience helped me to understand how this works in this hospital. She was called to take her exams and when she was leaving she told me "hey, they don't have reactives, don't forget to go to the other side of the building and talk to the Dr". I thanked her.

There were two things i hated in the room where i was waiting. First, there was this poster of Hiv prevention and none ever put attention to it. I wanted to say.. hello.. hello... read this!! it is important!!! And the other thing i hated was something written in computer in the wall just in front of the poster and next to me.

"Remember!!! To die because of Aids is inevitable. Does not matter the privileges you have, nor how goods your Drs may be. There's no cure."

I said....BULLSHIT!!, and though that people who are not ill are always so "motivational" about Hiv, specially because they DON'T KNOW a single thing of what we are living. This is what i call discrimination as well, first that announcement is not based on scientific facts, at least not totally. Second, it is a way to intimidate us, we, who already carry this heavy weight. I don't need more fear... I HAVE ENOUGH!! Believe me.. Also this announcement just reinforces the fear around an illness that can't be ignored as much as it cannot be cured. I hope, there will be the day when talking about Hiv will be like talking about diabetes and that people will take periodical tests in order to ensure they are ok. That will save lot of lives... and in the mean time... break those fucking stupid paradigms you all have!!.

Well, after exams i went to check out if there was material for x-rays... nothing. I was missing a medicine from my prescription so i went there, nothing as well. Went to the Dr Villao office, she was a nice woman... with flu. Silly as it sounds.... but i got scared. Funny cause i don't think i am that bad with my CD4, but those are the ways our mind fails us sometimes. She noticed so she kept distance and told me that i might be able to take the test NEXT THURSDAY. I told her my appointment with Dr was next TUESDAY and that i needed the CD 4 test, she said "you have to change appointment date". Oh ok. After all it is useless to have appointment without CD4, Dr won't know a thing about my state.

Went to Drs office... and... OH SHIT, WHAT A HELL!!!. I saw someone i knew. I mean.. it was not like the previous time.. this time i really knew this guy, i met him in a disco some time ago, and he is great guy, friendly, funny, and you know the type of guys that all girls find handsome. I could not manage it as he saw me approaching so i simulated i was talking over phone and haven't seen him... and didn't stop at my Drs office (as usual...) but kept walking. Damn... i was afraid. I know he might be also ill, but if not? and if he realises i am and he start to gossips about me with others? :(( yep, i have enough fears in me. I talked with the pretty but silly psychologist that works with Dr over phone and asked her to help me to change appointment. She said she would, and i could actually leave.... in fact i was near the door.... but i came back... and looked at this guy from distance... and wanted to talk to him, to say... "hey you know, it is ok to see you here, i also have hiv. We'll be ok!!".... but i was afraid. I walked again toward Dr office.. and again i didn't stop there but kept walking. Then turned around and said... ok, lets talk. I approached him.

• Me: hey, how are you? long time without seeing you!


• He: Hey, that's right, it's been long time. How you doing? have you been to discos lately?


• Me: i am alright, everything's ok. I haven't been anywhere since some time ago.


• He: Why? because of work or because of health?


• Me: well... i guess because of both. mmm are you also meeting Dr Heredia?


• He: yes and you too?


• Me: well, yes. I had my first appointment last week. I am newbie.


• He: oh really, that's fine. it is all going to be ok (smiled)


• Me: yeah, i hope so. You know... i am still nervous and it's been hard for me.


• He: i know... believe me i know, it is always hard for all of us.

And we started talking, he gave me some advice on how to prevent myself from the lack of medicines at hospital. I told him a bit about my last meeting with Dr and how i almost die there, he laughed. I felt fine, i wasn't much of a friend of this guy.... but same as with the woman, it feels ok to know you are not alone. It is a pity that they are all ill with this, but still... they are teaching me how to handle it and i hope i can be a source of motivation for them. This guy told me:

• He: look at me, how long do you think i have been with it?


• Me: mmmm ... i don't know... how long?


• He: ten years


• Me: wow... but man you look so well!!

And it is true, when i met him last year he said he was 41 or 42 but he looks like 33 or 35. Plus, i would have never ever though he would be Hiv Poz. We talked a bit more, he told me his perspective about the medicines, and the treatment, and about my wishes to lose weight. I would say he was a bit old minded.... you know... and perhaps he was a bit more on the negative side of things. Or... perhaps he was more realistic than what i am right now. I don't know... i have good expectations for my life and my relationship with Hiv (to call it in some way), and i want to keep it that way. If i am blessed enough i might not have so much troubles. It was fun to talk to him and we exchanged phone numbers, he said "I'm going to be there to help you if you need it". And that meant a lot.

Talked to Dr, she asked me "you are not on meds right?" I answered "nope, i just had my first appointment last week, i am just taking medicines for infection". She moved my appointment, from April 17th to May 8th. To me it is a long time... long long, (she wanted to put it even farther), but as she didn't prescribed me anything else, i think she does trust my CD4 as much as i trust them. When i finish with my current prescription, i only have to keep with some antibiotic pills until the appointment. I was explained by the guy i met that they prescribe these medicines while you are healthy in order to prevent you from any infection, specially if they don't know your CD4 numbers.

So that was my day, then i had meeting at work, then went home to sleep and listen to music for the rest of the day. Mom took my older niece to Dr and she might need a minor surgery. Pity, she is not even 10 years old. Although i know she will be ok. Had dinner, and i have to sleep early (it is 2am already) cause tomorrow i have to do the fecal test 6am and then i have training sessions at Alegro Pcs headquarters from 9 to 11am, then work at 1pm until 9pm. That's it.

What i learnt?... one should never be afraid to open yourself to others, because those others by helping you... might be helping themselves. I know the guy and the woman i met today... saw in me their reflection from their first times... and they related to what i feel, and helped me... and i think that also helped them to cure their hearts, they are giving a hand when perhaps they found none... and that makes them better people today and heal at least part of the suffering the might have had....today they had to choose what to do... and they chosen to make a better world.....and thats enough to be sure they deserve to keep on living a good life. It is nice to meet wonderful people everyday. When i was healthy... there were days when i found none to help me... and now that i am weaker, other weak hands made my day. Thank you!.

Labels: New life, same illness, Scientific

Today i had a nice chat with Claudia (my psychologist). I went there with Mom, it was cool. She gave us lot of scientific information about the illness, that normally patients don't get but she did it cause she though we were prepared to analyse it (Off course, my family has always been brilliant!! Lol). It was so interesting... and scary. She explained me the four levels that Dr mentioned and all that... when we just started with it... i felt i wanted to vomit....luckily a glass of water helped me.

She told me that diarreah for long time, is a serious synthom but... it is not the only thing Dr will look at before starting with meds. There is a whole matrix showing many things. It all will depend on my tests of tomorrow. If tests go wrong, i will start with medicines inmediatly even if i feel as fresh as a carrot. I also got some other answers regarding medicines. So far... life expectancy for people with my illness is around 20 years (afer starting with medicines).... it can be a bit more. That's statistics until last year. After those 20 years the illness becomes resistant to all the medicines developed so far and well... you know what comes next. The good thing is that almost every 1 or 2 years approximately there are new medicines on market that expand life expectancy for people with my condition, so... eventhough i am given a maximum of 20 years of life expectancy right now, it might be that with new medicines i could live even longer. She told me that medicines are so powerful that even if i hit worst conditions, medicines can take me out from there... but the most important, being medicine available there is no reason why people should suffer as much as it is seen on TV, that's just lot of black marketing and not much of responsible education. Once i start with medicines i cannot stop them... and i have to be very strict with schedules cause Stichito mutates very fast (funny... i got a smart illness as well..). Regarding side effects she told me that approx 25% of patients suffer side effects it all depends on every patient and she added: "if you keep on thinking about worst conditions... you will have them, so stop with it!".

Truth, we were talking and she told me i am starting to develop a case of clinical anxiety, which is normal in these cases but that i have to fight. "Dr is in charge of keeping your body up, i am working in keeping your emotions up, but you have to work in keeping all yourself up, otherwise you are playing against you and us" - She said. Then she showed up a short movie about an Argentinian guy, who was also diagnosed same way as i did. It was actually quite funny, he felt sick for everything, and even Drs told him he was right, he always though "they are lying, they are not brave to tell me i will die". There was a phrase that touched me in the video:

• Dr says: Mr Marketo, you are overreacting and exaggerating don't you think?


• Guy answers: Perhaps, but I've got HIV you know? it is not flu!!


• Dr says: Ok but you know, to die is not so easy!!!

I felt identified with the words of this guy but Dr's answer stayed in my mind. To die is not so easy. That's actually true. In the video, Dr dies before this guy, Dr had a car crash... and it was then this guy understood. "To die is not so easy". And started to make a list of many things he wanted to do in his life, sky diving, surfing, parachuting, go fishing with Dad, learning to dance Lambada, Lol. that was so funny.

In Argentina and in many other's part of the world this illness is not considered as the worst in life. It has became an illness you can live with. It is still a serious illness that you all should avoid, but if you get it, there is no reason to lose the hope. The hardest part about this is the stigma present in our countries. I am sure many of you feel afraid, shocked, surprised with my disclosure, and perhaps feel sorry... Although i am and i will be OK. This is like Cancer, you have to deal with it, the only point is... if you could prevent Cancer wouldn't you do it?. Off course yes. Same thing with HIV. I mention this because only this week i met in my city 2 girls and a guy who are having sex without condoms. I made numbers and i got afraid. I am talking about university students, well educated people with good jobs... and they haven't even though in taking HIV test. It was my case you know, i always though i was not even near to a group of risk...i was wrong. Think about it.

When i joint AIESEC i was told we could change the world... and that we could be Change agents. So i am and i believe in it. This could happen to anyone if you guys are not careful, so please pay attention. I believe now, this virus is growing so fast because we never really talk about it, we have lost sensibility to the messages around us and we are all so afraid that prefer to avoid the topic. That's not the answer, the virus is still there, perhaps if i would have talked about it more, i would have been able to avoid it. Some stories i read says that it is important that HIV + (HIV poz) people become more visible, for two reasons:

1. To show others.. this really happens to anyone and they must be careful.


2. To show others ... there is no reason for discrimination, we are human beings, not demons.

This is me, the JuanCa you all knew since 1998 when i joint AIESEC, not sure if that means something for some of you, but i hope so. I am a normal human being and now i am HIV + (HIV poz)... and i don't need to be discriminated when i worked against that during 5 in this organisation!!. I used to say One by one We eXchange people, One by one we make a better world. And happily i think i am still making a better world with this i am doing right now.

If you got to read this... now you know my recent biggest secret... and the only thing i hope is that you deal with it as a friend, not like a journalist willing to spread this as the hottest news around the city/world. This is my life, not the news reports at 8pm. Also if you are a change agent i hope you have learnt to respects others privacy (plus my mother is a lawyer and you could get in troubles, lol). No gossips please, OK? if you have questions, feel free to ask me. Don't need to tell to anyone else, it is My Right to talk about it when i feel like doing it and to whom i feel like doing it. Got it?

Ok, this is my new journey. This is what blows my mind since a month ago... and slowly, i am feeling OK with it. I have talked to many different people, read other's stories... and i have found out so many valuable people... who suffer, not because of the illness (that part is the easiest to control with medicines) but because of being badly threated, margined, fired, insulted... it is so stupid that the world instead of giving a hand, would kick them, better say kick us out. So far i have told my diagnosis to 6 people who are not ill with this, from those only two people took it wrong. One person reacted really bad and other said he was understanding... but ended up leaving me alone. To me it is ok, the person who loves me the most in this world (my mother) is with me, and she is my team member. If the rest of my friends want to stay with me like real friends without judging me or being afraid of me, then great. if not... doors are always open guys, you don't need to be near if you don't want to.

There are some stories i would like you to read... they have given me the power to explain what i am explaining to you now. Truth to be told by Regan Hoffman, Ann's HIV Blog, Marvelyn's HIV Blog. They are definitely worth reading.

Claudia told me that as this is overwhelming to me yet i might need support while visiting Dr to avoid being in shock. So for next appointment my mother will be with me... well... it will feel like going to an appointment with mom next to you... :(( i will look so silly, but i know i need it. As for the rest, i have decided to stop reading scientific things, i can't digest all right now. And have preferred to focus on LIVING MY PRESENT, cause that's what matters.

Spent the rest of the afternoon at my sister's house, playing with my nieces and sleeping. Now my body feels a bit more tired as part of what i am living. It is ok, it is always good to be in bed. Tomorrow i will have to wake up 5am to take the other tests at Social Security Hospital (i still don't understand why if i am ill i have to wake up so early...damn!). Expect some pics tomorrow ;)

That's it, got to go now. Xyahka

Labels: New life, same illness

Today was a normal day, not much emotions and that was nice. I need to have more of this type of days. Good news, one of the two troubles i had at work got solved today (the easiest one) about the other... none said a word today... so i guess the discussion reached higher levels in the Alegro PCS evolution chain.

During morning i went to do my first test prescribed by Dr in a particular hospital, then went to social security hospital cause i needed to get some x-rays done....i was received with this news: "There's no material, call after few days to see IF we have it". Nothing else i can do i guess. Luckily i am healhty. Yep, i am a fortunate guy.

Went back Home with Mom and were talking a lot, she took the chance to ask me some questions about my illness, and we had a great time, plus she made lunch
for me..mmmm!!!! tasty!!!!!! Then headed to work. There was some minor problem about eating at working place.... so we'll have a meeting on thursday morning, that's fine.. i mean there are bigger things in life to worry about, the only thing is that it crosses with my schedule for exams prescribed by Dr, but i hope i will manage to get everything done before the meeting.

It was not easy to say all the things i posted yesterday night, it was very personal. At first I felt ashamed.... i didn't even want to read my blog. Although now i am glad i post it, i feel free. You know shame does not serve me at all... now that i know i might leave you, i guess it makes sense to speak out my mind before i go.. I want to be totally myself and not to fear what others may think, after all... this is MY life.

For the rest of afternoon, I was looking for some info about eating healthy, and found some interesting info on internet, also about illness related with loosing weight. Something remarkable i have found about the people with my same illnes is that they develop such a wide and deep knowledge about all sort of additional illnes that
might affect them, also about medicins to threat them. Sometimes they become as good as pharmacist. Today i was reading a bit and found out i know nothing about cells, proteins, inhibitors, glucose, and much more. mmm... looks like there lot to read about. A LOT. Knowledge is power they say. I want to have power too.

Tomorrow i have appointment with my psychologist together with my mom. I have to admit these meetings are helping me out to deal with this. I want to talk to Claudia (Psycologist) about the way i am dealing with this, the empty feeling inside, the feeling of having lost myself and some other stuff. I am making team with my mother to face this, she is always there supporting me... despite the fights, love is always there. And...like Lilo said: "Ohana means family, and family means nobody gets left behind. Or forgotten" (Lilo & Stich). And that's so true... and i thank God for it.

Plus, i have been thinking i need to re-formulate my goals for this year.. due to the obvious changes. So i checked them up and reorganised them this way:

1. Finish the year healthy and without medicins.Totally possible.


2. Talk a bit more with my mother and make sure she is happy. That's actually happening and i like it. Since she knows i am sick we talk about 5 or 6 times per
   day. I am sad i gave her such a bad news about my health... but i can still make her happy and proud of me.


3. Get rid of debts with my credit cards. Top priority.


4. Become Administrator or any higher responsibility within Alegro PCS. Or.. find a part time job as soon as i can.


5. Finish the year with 70kg. That's funny cause despite of my illness i am still 78kg aprox. I still want to lose weight, but i have heard i must be carefull,
   if i don't control myself and go hand to hand with Dr. i might get very weak and thin. As for now, i will start with few exercises at home.


6. Wake up early everyday 7am and do exercises 5 days a week. Mmm... let's change that... i need to rest so lets say 9am 2 days a week (until i find the part time
   job)


7. To live by myself (or with someone else) by the end of the year. This is still possible....mmmm... but i am not sure if i am that interested in it right now. I need to get used to what is happening to me, and i might need help. Right now i live alone at Mother's House and sometimes i feel too lonely (specially after diagnosed) other days i feel i need some silent time with myself only. I'll see.


8. Finish the year with 1000 usd of saving in my bank accounts. I will feel myself ok if i get rid of debts.


9. Go back to University. I guess this will have to wait.

So... with this adjustment, lets see what else is 2007 going to bring. I remember that by the beginning of the year i said this would be a hard year... never knew how right i was.... next time i will shut my big mouth off ;).

I love calmed days, like today, when nothing happens, and you don't need to react, nor to protect yourself against anything/anyone, these calm days... are to be enjoyed... because they just let you BE.

Labels: New life, same illness

Hi, today talking to Max, from Quito, i was telling about my recent facts and he told me these words in latin "Noli me tangere" he said it meant "Don't let anything touch me" I found a slightly different meaning in Wikipedia "Don't touch me" eventhough can be used same way. This phrase was taken from Bible (John 20:17). There are several reasons why this phrase made its way until my blog today... some reasons you don't know but that are part of the puzzle (my life) that i am trying to re make right now.

None of you know, but before making my way to a non curable illness... i was struggling financially and had troubles paying my debts. How come? well, until last May i used to have two jobs and was making around 700 usd monthly working 8h 7 days a week. Then i was fired from one job and stayed with the one i have. Income fallen from 700 usd to 180 usd. The problem is that i am paying some stuff i bought while i had a good income. I didn't look for another job inmediatly cause i was tired... over a year with two jobs every single day (even holidays and weekends) it is somehow too much, and i though i could make it with the one job i had. I know i was wrong, you don't need to tell me.

So... the situation before my illness was.... i have debts over 2.600 USD with almost all my credit cards and the company where i bought my laptop. Plus as i am living alone i have to pay electricity, water, phone and all that on monthly basis. It means that i would need to pay around 500 to 600 usd monthly, when my salary is 180 usd after taxes. Oh yeah... when i said struggling i meant it. For several reasons (that i don't remember right now) i haven't been able to pay my credit cards since December 06, that was a problem... they call me all the time... same with the computer, and by beginning of March (few days before of me getting sick) i got water cut at home... and still is. Yes.. i have no water at home at this moment. My mother sometimes ask neighbors to give us some. As i spend most of my time out home i don't feel it much.

I remember myself asking God some help, i dislike having debts and it bothers me... and then... certain comet hit me. I didn't see it coming. I got diagnosed with this non curable illness. I was saying to Irina i had been hit lot lately, well... this is the whole picture.... when i said i had been hit a lot, i meant it. After the two tests and two shocks my diagnosis got confirmed, found my way to see Dr and i got this "level 3 or 4" classification that puts closer to heaven (Lol). Then i had a nice weekend, i though.. that's all... i have my big debts, my big illness, my big diagnosis... nothing else could be bad!.... but i was wrong.

Today i had two troubles at work. Somehow big. By 06/03/07 (a day before getting ill) I had some client renewing his contract with my company, he wanted to apply to some promotion, so i called our call center to make sure if he could apply and if promotion was still available. I was said yes to both questions.... but since last week i am involved in a internal discussion, cause the supervisors now say the info was wrong and this client didn't apply for the promotion. That is actually not a big problem, except from the fact that with the promotion this client got a discount of over 100 usd. Supervisor's head told me today: "I am sorry we cannot assume such a loss, it is too much money... we have to get it from somewhere". And that somewhere... might mean... my already weak pocket. Then i had another client with another problem, but i think that one is easier to solve (if they don't discover this client also applied to that promotion that now they say it is wrong). That means i didn't do it wrong by intention. I was told several times these clients applied for the promotion... and none said a word, until last week. Off course i cannot use that in my defense cause i risk that all those contracts might be broken and i would have to pay 100 usd per each one of them. Silly isn't it? So i just have my word to fight and I have my fingers so crossed.

Today i told the story to one of my good friends and he said "you know.. i don't know what to tell you... i know it is all falling on you at the same time...i just don't know what to say". I have been told not to stress cause it is not good for my health.... but i have had such headaches today.... for instance i felt my head would fall on the floor. The back part of my neck is in such a pain. I ate 2 hamburguers (which i actually should not) and felt a bit better. I feel there is no rest for me now... feels like God is making a strenght test on me... wish He would stop it..... I am thinking in having another job again... but i have to stablish with my visits to Dr and my illness cause i can't get a new job and ask for permission to visit Dr too often... plus, with my illness i am suggested to rest more... ha ha... to rest more, is it a joke?

Then i looked at my whole picture... oh God... it is like hell.... and the funny part is that it makes me laugh... i mean...i can't imagine not even in my dreams someone with so many problems like i have right now. I mean not even in movies... that's funny you know? sometimes i laugh and say to myself.. "God must be crazy!!!" with respect off course. Only in his mind this situation could be possible.... and still i wonder.... Man (God), how come do you let this illness fall on me when i am already in troubles?? I mean i could have been ill of this anytime... but why now? why all together? haven't you realised it is too heavey weight on a simple human's being?... and i have no answer... or sometimes yes, sometimes he gives me hints on how to go through it. Like today.

These are the reasons why i am weak and tired (and perhaps negative) these days... it is not only the illness itself which is already a big problem... it is all the others things as well. I want to point something..I AM NOT ASKING FOR ANY FINANCIAL HELP NOR ANY KIND OF MONEY. Have it clear. So please don't dare to make such offer. I just wanted to share the whole picture of this new world with you those who care about me, so you can best understand me. I am not requesting pity, no sorry feelings, nor pobrecito (poor guy) thoughs. This is just me, how my life is going and the test that has been put in front of me.... the whole truth. I decided that Noli me tangere would be my phrase today... cause i won't let any of these things touch me, nor touch my heart. They said "God never gives you more than what you can stand". I have been standing these troubles since December.... on March they got really worst... and today... there was just one more rock put on my already heavy weight.... but i don't tremble, sometimes i seem to be falling... sometimes. Sometimes it is tiring... but i am not totally weak at all. Cause someone prevents me to fall completely.... i never knew i would be so strong... and it is because i am not that strong, that's the truth. There's someone else helping me from above and he carries my heavy weight when i need to rest.... like right now and when i need a hand... he gives me two plus a word of encouragement, and rises me. Like today, like right now. Noli me tangere tonight.

Labels: New life, same illness, Spiritual

Hi, today i had a nice chat with Irina (Bulgaria) and she pointed something i had not noticed. I'm becoming too negative. I think you all will agree with me and her that it is understandable due to the dramatic changes i have faced in the lapsus of a month.... but still she said something smart (as always): "You know.. i really think you are in a great position in life, cause it is giving you the chance to enjoy every second you live..and live it to the fullest". And i though yeah, it is right... but i don't feel so. I know it is true, but i am perhaps scared of re-starting again. I've been hit too much lately.

Although Irina's words stayed in my mind whole day, sounding and sounding... i decided to take my first step to change my "angle of view" like Irina said. If some of you remember... i was reading "The art of happiness" book, based on Dalai Lama's speeches before i was hit by the truck. Lol. I remember myself being so full of energy and hope, and very high spiritually.... until my whole world disappeared just in one second. All this ... you know it. What you don't know is that since the moment i got ill... i stopped reading that book. I knew i had it, i knew i didn't finish it.... but i just could not open it. I though it was useless... "art of happiness"??? NOW?? WHAT HAPPINESS???!!. I rejected to read the book again, for around a month.

Irina's words changed my mind today... so watched two movies "300" and "Open Season" (I know i know... i like cartoon movies, so what? :))) And then ... i decided that my first step toward my own resurrection would be to re-start with the book again. I know where i left it before Stichito moved with me (Lol) but i decided i would start the whole book again... because the old me read it, but for me... for this new me... it is my first time with this book. So... i am glad. I feel happy getting back on track and slowly do the things that the Old JuanCa could not do before dying.... this is my first step toward RESURRECTION.

What's next? i don't know.... and i don't care... let's go day by day... OK? Big hugs. By the way, i have the book in Spanish in a doc file if any of you want it, drop me an email. it is free.

Labels: Personal

Aha, i had a better day today :) and... got a haircut!! To say true i was trying to get one since some time ago... and i just could not find time. Thanks to easter i did it. I got my hair very short... There is no special reason for it, i just wanted to have it that way. Perhaps as a way of showing how rebel i am with everything that is happening right now. Here my just taken pics.

This is the face of the new me.

Today i assimilated one more thing about my new life, I will have to go through it alone. I mean there are people always around who gives you a word of encouragement like you all, and who try to be with you when they can... but true is that at the end of the day... in this new world... is just Myself against Stichito.

And i also understand that being with me while i am ok, it is nice. It is normal, but when (or if) things get harder... some people might not want to be there. We all have our own problems, and own challenges, it would be stupid and naif from me to expect there would be someone willing to share this heavy weight with me. Plus.. this is a lesson for me, a test i have to approve. In my new world, there are some people that loves me... but cannot totally understand me, none can put themselves on my feet, others that understand me and respect me but don't want to get involve in all that is happening to me right now, they like to be in a the easy place of this new story. Like the friend who told me today... "I understand you... but i don't want to get involved in it". At first i could not believe it and it hurt... i considered him my best friend in this moment. He is also ill. Then i understood he might be too busy with his own problems to have time for mines.... and thats ok. Perhaps it is better this way.

I want to tell you a secret... i fear death. Not my death... but the death of others around me. It is not because i have this illness, i have been afraid of this since long long long time ago. I am afraid one day in my life i will wake up and that all my friends will be gone... to a better place, and that all that i will have in my heart would be just remembrances. Not being able to talk to my mother when i need her, realising all the meaningful people in my world are not there anymore. That would be a hard thing to accept and to deal with. Now.. i understand this might not happen, cause i could still leave this world before you (feels I've got a ticked booked already Lol) but still there is the chance that i can last long enough to see some of you part. That would be too hard for me.

Strange thoughts, i guess. Most of you don't think about death... or prefer not to, cause it is something none knows when it will come.... it seems to be so far away. Although for me, Death is a reality in my new world and i am afraid (and Dr didn't help).

But i am starting to try to go day by day... so... current situation analysis is: I lost almost everything i had. Although i have some things: The inner me and my health... for the time it lasts. I have these two tools against Stichito and i will use them. So current strategy is: The inner myself will rebuild my world and find ways to maintain or increase my good health. My health will help the inner myself to reach this goal. That's what is planned at this moment, if something fails... i will make a decision when it happens.

Today was a good day, stayed home with Mom, getting along better. She made nice food for me, Fish!! I loved it. Talked to my friends at work and a friend of us is just pregnant, thats nice... she was not expecting it... so i had to give her some words of encouragement (oh yeah... can you believe it?). While doing it, i tried not to just say words.. but to look inside myself some inner force to share with her... and i found few, and i shared it and it felt ok. There are some gifts God gives us when we less expect them... she might feel lost like me, off course different reasons but still a big change in life... change your world and freak you out. Then watching TV and i saw a strange movie "Being John Malkovich". Have you seen it?

Being John Malkovich is about some guy that finds a secret portal that takes him inside the mind of someone else (this case John Malkovich). At first i didn't understand it, but as i have heard about the movie before i decided to keep on watching... it was weird movie, but at the end... i understood something. I am John Malkovich. I mean... the story, is somehow like what i am feeling, i took the portal and now i am inside someone else. It is my same body but it is someone else cause it is not the old healthy Juanca i always knew i had.. and that i though always would be with me... but right now.. he is not, he is gone.

You know... now that i reflect... i saw same topic twice today. Today in the afternoon i saw a TV serie about travelling back in the past and this guy had to go to the past to save Pope from being killed. The trouble was that when he arrived to the past, he found himself inside Pope's body. I laugh right now.... i didn't relate that TV serie with what is happening to me now... so God found out the way to deliver me the message a second time today, until i finally got it. I am sorry for being so short in view Lord. I also saw a movie about Spartacus and how he fought to live free, he learnt that live means nothing if you don't fight for it. I almost miss the message sent from above to me today.... Lord, thanks for keeping on talking to me everyday... sometimes i walk going to my work and i hear songs playing loud, Gospels saying "He will give you peace in the middle of the storm". And i thank Him (God) cause i know and believe that in life everything happens for a reason. And believe me, God do talk to us everyday, are you open to listen to Him?

So, my advice... never take yourself for granted. Worry a bit about yourself, your health, your body, your life and others around you. But please do it now...I am serious in this, I beg you... DO IT TODAY.....life changes too fast and unexpectedly, believe me... look at myself and listen to me. Cause one day... all from sudden life changes and there is no warning about it. Suddenly it all turns upside down... but if you are conscious of what you have and who you are right now... and enjoy it, that will help you not to miss (much) the things you might lose when the time arrives. Seems like i am learning about myself... oh wow... i am evolving!! Lol. Irina left me a word in my mind for this holiday... resurrection. RESURRECTION. That's a nice word.... i will meditate about its meaning tomorrow. I want to resurrect my world.

Mother invited me to go out tomorrow, looks like my uncle will go to a swimming pool... i am actually not in mood for going out, not much reasons to be happy and celebrate lately... but i think i might go with them. I have been closed in my small new world and my house too much lately. Let's see what's outside there!!

Labels: New life, same illness

There are few days like today... when i lose the hope.

When i feel the dark coulds of the storm cover my beloved shinning full moon... and i feel lost one more time, and alone.

The worst is to feel alone and when you feel things are not going right as you expected.

Today i argued with my mother, that's actually normal for me... we have always done the same (too many different opinions, just that)... but it hit her deep. She went outside our balcony to stay alone... i knew i might have hurt her, or perhaps she felt guilty, thinking that as i am sick, arguing with me could get me worst. Eventhough it does not work that way... it actually made me feel alive, cause i know she loves me but we just have too many different ideas about live. Even psychologist noticed so.

I went there and tried to talk to her and explained her thar arguing is ok, it keeps me alive in a "normal" world, as it used to be..... but she is not easy in deliver forgiveness... that's something i never liked from her. So she start saying things like she didn't come to visit me because i am sick but because this is her house. Also... i asked her to take off some stuff that is right in the middle of my house.. i tried to clean some space where i could at least feel my world was getting clean and in order and now... it is a mess again and crowded with packages and other stuff... and i asked her to move it, i want free space... that bunch of useless things bother me, i don't feel ok living in such a mess (eventhough my house has always being like it). And she said she won't. We said many other things...and then i prefered to leave.... and i feel sad now and lonely. Cause nobody understand me. I feel so fucking lost and alone in this mother fucked new world. And i wanted to sing this to you all who has gave a hand or a word in this during these days....

Title: Tomorrow
Artist: Avril Lavigne

And I wanna believe you,
When you tell me that it'll be ok,
Yeah I try to believe you,
But I don't

When you say that it's gonna be,
It always turns out to be a different way,
I try to believe you,
Not today, today, today, today, today...

[Chorus:]

I don't know how I'll feel,
tomorrow, tomorrow,
I don't know what to say,
tomorrow, tomorrow
Is a different day

It's always been up to you,
It's turning around,
It's up to me,
I'm gonna do what I have to do,
just don't

Gimme a little time,
Leave me alone a little while,
Maybe it's not too late,
not today, today, today, today, today...

[Chorus:]

I don't know how I'll feel,
tomorrow, tomorrow,
I don't know what to say,
tomorrow, tomorrow
Is a different day

Hey yeah yeah, hey yeah yeah, and I know I'm not ready,
Hey yeah yeah, hey yeah yeah, maybe tomorrow

Hey yeah yeah, hey yeah yeah, and I know I'm not ready,
Hey yeah yeah, hey yeah yeah, maybe tomorrow

And I wanna believe you,
When you tell me that it'll be ok,
Yeah I try to believe you,
Not today, today, today, today, today...

Tomorrow it may change [4x]

Sorry guys, i try to believe you when you say that it all will be ok. I try to believe you, but sometimes i don't. And sometimes i fear the death. And right now it is so important that everything goes ok... but it does not happen.... not today. So i prefer to think that tomorrow it may change....tomorrow is a different day. I am still ok.

Labels: New life

Hi, meeting my Dr yesterday was not what i expected....

First i had to go to the other side of the city to pick up the last document i needed in order to present to social security and get the appointment. Done. Arrived to the Hospital around midday.

Went to look for Dr's office... and then... damn... some people i know. What a Hell!!!. I actually didn't know the couple of people who were seating in the waiting room of my Dr but i know i have seen the once or twice somewhere... they looked at me approaching and openned their eyes wide open.... oh yeah.... that wasn't nice. So i didn't stop in my Dr office but kept walking.

I know it is silly but i don't like people staring at me... come on.... give me a break!. I called a friend from the foundation i am attending and she called the psychologist that works with the Dr so she would meet me outisde in the area next to the Dr's office. When i saw her.. i though... nice woman, pretty... but very young... then, while she was still standing in the waiting room of my Dr's office she saw me... and SCREAMED: "Juan Carlos!!! Juan Carlos!!!". And i changed my mind.....fucking bitch!

She came closer and was still screaming my name so, i had to tell her: could you please stop saying my name so loud? As i talked to her, and perhaps due to the first impression....i disliked her. I mean she is pretty, very pretty, but very fashioun style girl...you know? She seems to me like a teenager who is always willing to look so cool!! you know always in the move, in vogue!!.... And i hate that. I mean i was a bit like that in highschool... but that was like 10 years ago. I think she is also, careless for what i feel, there were several terms she used while talking with me that i dislike.... and i had to tell her, you know this words you are using are offensive. She said... well they are common words, in fact if you check them... they are not offensive really, but you are much more sensible now because of your situation. Perhaps, perhaps...who knows....... she might be a fucking bitch but she is not silly (there is no silly woman in this world i think).

Well she helped me to find where to register myself and open my folder as it was the first time i went to social security services. I have never been sick before... and now.. i am in such a situation i could die. Fuck off!! And when i arrived there to open my folder... i saw what you see in this pic.

Aha... closed. Or better say openned but emtpy... that's same like closed to me. In that moment i remembered... God Damn... Social Security... where the hell i have fallen... and it is actually Hell. Social security services in Ecuador are well known for being a disaster, careless attention, lack of medicins, too many procedures and few people working all the time. Yesterday as it was thursday before Easter they decided would not work whole day.... eventhough they never work whole day, just from 8am until 2pm. I had to wait almost an hour until this f*/$& woman came back!!! She attended me and sent to another windown that was... guess.... it was empty too. I was looking like this...

So well around 2h30 pm it was solved after begging, praying, and looking for someone to help me. I wanted to tell this man of the last window who didnt want to help me: you know man.... i could die!. And in fact i almost did. I told him: Please help me, i need to see Dr Xyz, i am ill and don't feel right. He looked at me help me out, but it was embarrasing... one does not have to beg for health attention... oh well... in Ecuador you have to.

Went to waiting room, it was almost emtpy... great!! I talked to couple of people there... one is a girl and she is also newly diagnosed. She was devastated and lost in the process... she didn't even had confirmation test. Before me there was a guy talking to her, and giving her motivation. Later i met this guy and he told me he has been 6 years ill and never hit any hospital bed. I though that is great!!. Then i asked... and since when you are taking medicines? Six month after i was diagnosed. OH SHIT i though. In this illness once you start medicines they are forever.... you can't stop them. You have to take them in strict schedules.. every certain time they give you different prescriptions but... you will be with medicines for the rest of your life. That actually might not be a problem.... except for the fact that this threatment is as strong as chemoterapy. Yes, it is. So side effects are always there. In the case of this guy, who was rather fat type he told me he had never had any side effects, but have heard about people feeling like dying and worst with medicines than without them. My God.. where did you put me? I though. I have been reading about side effects and there is something very common... Lipodistrophy. Lipo what? yep, i asked the same. This is an illness (or condition, i don't know) but well the thing is that due to some medicines, your methabolic work inside your body changes, and the body automatically reorganize the fats you have... and you can't control it. So slowly... you get a bit...deformed. Ok, not really deformed, i have heard about cases where people ends up with very thin legs..(Oh my God...am i starting with it? hope not...i haven't started with meds yet)... but they start to have big bellys, and look overweighted. For woman they start to see their brass start to grow... or you have too much fat in other areas like down your chin, face, below armpits. That is not reversible, it won't change with excercise. With the years some people took liposuction surgery as an option and some of them have seen good results. Isn't this all too big? Other side effects are fever, feeling sleepy, feeling tired, pain in differnt parts of the body, some medicins might affect liver or kidneys... this thing is a whole new world (another one? come on...let me rest). Risky in way of seeing it so i want to prevent myself from medicines.

As any illness motivation and care is a big thing, so i am planning to look after myself in the right ways so i won't need strong medicines never!. I am optimistic in that....or i was before seeing Dr. She called me, she is an old woman. Weighted me, took blood pressure... i asked. is it all alright? they answered me... are you worried? i said...well i worry about everything now. Blood pressure is fine. We talked and talked and talked, i told my synthoms, about the diarreah and all that. Showed her my first exams, and bla bla bla. Then she gave me something too strong that i wasn't ready for...

"Look according to the standard for non curable illness in USA there are four levels, the number 4 is the worst, cause it means the illness is really advanced and your risk your life. There are several synthoms in every level and there are different conditions to point out, but according to what we have just talked, i think you are on level 3 or 4" - she said.

WWWWHHHHAAAAAATTTTTTTT?????????????????????????????????

LEVEL 3 OR 4???

WWWWHHHHAAAAATTTTTTT???????????????????????????????????

My God this woman is telling me i am going to die ... soon. Fuck off!! Double shit!!! And then something happened...defense system turned on and my mind stopped processing anything... i keep on hearing, listening, recording... but couldn't analyze a word of what she said. Plus right now i really hate when they come out with unexpected things... come on... fuck you everybody...GIVE ME A BREAK!!!!!! She said that due to the illness and the diarreah i might have lost over 10% of my normal weight and that it was clear condition for level 3 or 4. Plus the diarreah have me weak so my body is not really fighting the illness now and bla bla bla... i might die soon. Whatever she said i thouhg.. "i might die soon".

Today is thursday she said... i might die soon i though.

what is your name she said... i might die soon i though.

I showed her that just the first day i got sick (07/04/07) i had weighted myself (God is so precautious!) and i weighted 179.12 pounds. Right now i weight 173 pounds. She kept on telling i had lost over 10% of body weight and my defenses are definitely low and the diarreah and bla bla bla. She convinced me.. i was lost and in worst condition than i though. Well i think i had such a face that she had to tell me... you have to worry about this and keep on living, you have to make your decision to fight and all that i have already trying to build in my mind before... but come on... level three is an earthquake in my ruined world. I asked if there could be a possibility that i can be ok, even after having diarreah and loosing weight... she said "we have to be sincere, i dont want to lie to you.... we have to face this and you have to know you are in a dangerous condition". Oh... i said, ok. fine.

We kept on talking to see if i had any other damage related with the illness and well... she examinated me and i was totally ok. Then something very embarrasing happened.... i told her i have had some eruptions in my legs in the past 5 years, she wanted to see it. I told her:

• Me: but i have to undress... it is down in my leg.


• DR: Do it.


• Me: Here? (there were 4 women there... including the pretty but silly psychologist)


• DR: yes, here.

Oh my God,..... that was embarrasing... but i though...whatever!!! it is not the first time i undress in front of others anyways... thanks to AIESEC. The eruptions were nothing actually, just something else in my body but nothing to worry about. Well Dr prescribed me some medicin for stomach infection and ordered like 5 more tests. With the tests answers she will confirm her diagnosis. I hope she will be wrong.

I left hospital around 4pm. Yep... 4 pm. Went to work thinking that i could die, i had to talk to someone so i told my other friend and i told my mother. Off course she almost die with me. I could not hide it, i was too worried. Later while in my work i could not just.. take out of my mind Dr words... level 3 or 4. Fuck off!! i am not ready for that i always assumed this illness was just starting in me... and that i could fight with Stichito (Stichito is the friendly name i gave to the illness... i know it is Disney style.. but come on, Stich was nice and Stichito is with lot of tenderness). Then i called other friend to talk about these standards and he confirmed the info. I started to made numbers and found....DR IS WRONG. I mean i haven't lost over 10% of my weight... just 4 or 5%, not much to be happy for but it means i am not within this parameter.

So, as for me. I think i am ok. I am in great shape (and i wanted to lose weight since long time ago anyways). And i don't consider myself in level 3 or 4 of any illness. Period. Thats it. I understand Dr might have done wrong numbers and my mind was not ready to correct her but i dont think i will die soon. Come on, look at my pics and i am in great shape. So next thursday i will take my exams and then i will be back to Dr's office and she will say... YOU ARE PERFECTLY OK. Because that's all i will accept from her.... no more bad news in my life. I have said it.

Plus, i dislike i feel they don't understand what i am facing now... i felt Dr was saying... this all is your fault. Plus i felt i was not even human for them... i was expecting some talk, some understanding... i am human being, new in this... i am not just a number. But i accept Dr must have attended over 50 patients yesterday so one more was not a big thing. Well... these are the news in my world, Reporting from devastation camp.. your friend. JuanCa.

And don't worry about me, i know i am fine. Period.

Labels: New life

Today is just a great day... of my new life. Yep i am still diagnosed with a non curable illness... but i am OK with it now. This illness is my new partner. Like Lilo and Stich (with the difference i am not Lilo and the illness is not Stich LOL!!).. but i mean... we both can get along now.

These days i was reading a blog of a woman with my same illness and said something like "everything has changed since the moment Lola moved with me". Lola is
the friendly name for the illness. I should actually find one like that... don't you think? It might also make the long way in front a bit easier. If i am not wrong, non curable illness are made of viruses, or something like that.. and they can't be killed because they are alive and change... they learn and mutates and become resistants to treatments. So... if they can THINK and LEARN to avoid the effect of medicines, if they are ALIVE... and keep on expanding inside my body. Wouldn't it be good if i sign the peace with my new friend?

I mean we are sharing same room (my body) what i do...affects him (or should i say "it"... who cares!!) and what he does... affects me. None of both can quit our
body... without loosing the other one. My new friend needs me... and i don't need him but i can't just get rid of him. He will be with me for the rest of my life. I can't leave cause it means dying and that means the illness would die with me. The illness can't leave... well.... it actually could, the problem is that there is no way to force him to do it right now, not a way to kill him.

OK, if.. illness thinks and is alive... can i talk to it? can we be friends a bit? can i talk to it like some people talk to plants and babies before being borned? can we sign peace agreement and say we won't kill each other?. If that is possible i want to try it...even though i know an illness like the one i have might not be trust worthy... he knows that if i could kill him.. i would. And i know his goal when joining me... was to kill me too. We can be friends... perhaps.... but i have to keep an eye on my back. Always.

OK, change topic!!!

HEY....today, is my first week after diagnosed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And i am so OK now!!!!!!!!!!!!!!!!!!! Isn't it great?. Not many things have changed in my life these week, just i have had a bit of anger and frustration.... not sad at all. I had to talk about my illness to a couple of AIESECers who asked about it, and it actually felt great. It was too heavy weight on my head. And today... today was a big day. I told my mother about it.

I wasn't ready, i knew i wanted.. but well... i was waiting the right moment, when suddenly the right moment crashed with me. She came to visit me this morning and said: "man... you are loosing weight... are you OK? have you seen Dr? what do you have?". Then i knew i had to tell her. It was the best moment... Momentum...it is all about it, don't you think so?. I could have lied... but then the Momentum might not have come again so i took my chance. Took air and said "i am ill with swwsxswxswe" (don't be so curious!!LOL). She stayed quiet....and then asked me if i had seen any Dr. So i told her a bit of how my last weeks have been. We went to talk to a counsellor and it was all soo fine... amazing for me... even though i know she might be suffering inside but don't want to let me know... i hope that is not
happening, but i guess when one is ill one can't prevent our parents from suffering... even if we wish so.

Well, that was a big movement, damn... it was a good Momentum, way to go Juan!!!!. Counsellor said... you are doing it right!!! doing the right things boy!!!.
And i loved it. It feels good to do what it feels right!. Tomorrow will be another good day, first Dr appointment. I need it, my life is all fine... but my stomach is still suffering of diarreah... will be a month already. It comes and go... getting worried about it. Tomorrow the science will relight me and save my life. :)

I have so many things to say.... but first i want to say is... this is me. As today... this is the way i look now. (pics just taken, excuse me for the terrible hairdo!!)

And yes... i am diagnosed with a non curable illness yet. Ahh and the beard is not related with the illness... it is just i have been very lazy to shave, plus someone told me it looked nice ;). But i posted the pics cause i wanted to say two things....

1. I am still the same, so threat me as the same. You might not notice the difference in my weight (i actually don't notice it in the pictures). But i have lost weight... how do i know? Now i can use jeans didn't fit me few time ago, plus... i see my legs, and i see then thinner. I mean.. i don't watch my legs often.. but one day i was wearing my socks and though... : "???? there is something wrong.... i feel my legs are getting thinner". Ahh and i don't have much belly now, Bingo!! Just don't be afraid. I am not a mummy yet.

2. I know what many of you are thinking. "Do i have aids?". And i have a comment for that... "why do you ask silly questions?, who told you i had aids?". I mean... i got fever and diarreah and still have it... but why everyone in Ecuador and perhaps in other countries think immediately in aids?. It is silly... man i could have got flu!!! the non curable illness? could be cancer. What if i have flu and stomach cancer? or brain cancer and diarreah cause i ate something wrong. Or what if i have grass liver... or what if i have aids?. Plus let me clarify you... it would be strange if i have aids right now... first i must be HIV + (HIV poz). And after several years i would turn into an aids living people. So please... DON'T JUDGE. don't be paranoid... and i am not talking about me... i bet if another friend tell you he is sick with something else... you immediately thinks.. he has aids!!. And the worst is that your thoughts doesn't help, cause you start gossipping... and the person can have aids or cancer or stomach infection... does not matter... the question is... do your gossips help? Answer is NO.

Really silly thing, but.... what if? what if it is true? what if i have aids? Or well... to say it correctly... what if i am just diagnosed HIV +? Would it make a difference? would it be more scary for you? would you love me more if i had cancer and disappear or be ashame of me if i am HIV +? What such a big difference might be? Tell me. Cause HIV or cancer or arterial hyper tension or weakness in my heart they are all serious illness and some of them have no cure. So whatever i have... shouldn't you love me just the same? shouldn't you stop gossipping with your friends about a friend who is very sick with none knows what!!! That's the reason why i haven't said what i have in my blog, that and because i am still not ready. It is my right to take my time to say it, OK?... that in the case i ever want to reveal it. So if i don't want to say it... then please stop gossipping.

These days i have learnt and realised how paranoid we all are and we can be... plus.... i have realised how our minds flies... and our moths too. And there is no help in that, at all.

Change topic OK? (didn't want to sound like a father lol)

Well, with my new situation, and my current challenges, i have found more motivation to stay alive. My goals that i though i could never get them... are now priority for me. Sooo.. university is coming back soon!! when? i don't know... i have no money to pay it... but something will happen and i won't die without having my diploma. Not that i will "die" for it (Lol these days i am so fond of black jokes Lol) but it is a goal. Also, i want to have a company, i am planning and thinking about it, right now i have some adds in MercadoLibre which is moving ok but i want to build up a company and i will make it. Another goal... go back to Russia... for long or few time.. i still don't know it. It all depends if i find medicines for my illness there... but i surely want to go back home. And home in my new world is placed in two places, next to my mother...and back in Moscow... in the middle of the long, cold and white Russian winter.... damn... how much i miss it.. one of the synthoms of my illness is that i sometimes have high body temperature... so Russian winter would fit me so right!!

As i said, all in my work is OK. I keep on working and none there knows i am ill, since i am not a danger for anyone than myself (if i don't look after my health).

Sentimentally i am alone and not waiting. Let's say... stand by period. Some people might want to date me right now... but i still don't have answers for this... so... i play around and date none. (i should have tried that before Lol). Emotionally and as a part of the ... acceptance process and resignation... i have mood changes sometimes.. don't know how often... but i bet you all have already realised about it...sometimes as i go into my feelings and emotions i yet find confussion... hey.. it was a big shock. Give me a break!! I continuosly fight among "the lost and its sorrow" and the "need to go forward and say all will be ok". Can you see the process inside of me now? hope you can put yourself in my shoes for a bit... and perhaps you could understand me.

Physically, in good shape. Only one stomach problem and normal synthoms of my illness which are not bothering me too much. I am thinking in going back to workout... perhaps running and perhaps swimming!!! oh yeah i love it!!! I wonder if i exercise myself that could make me thinner yet... but Dr wisdom will answer it tomorrow. As for the rest it is all OK.

As for my devastated world.... it is all alright. It is all full of ruins in my life now. But sun is shinning in my back. And the most important i remembered today is that even in the darkest nights... there is always a full moon. Which was God's sign to remind us... there is always a chance for light to shine in the middle of the darkness... and show us the path back home... may that home be the usual or a new one as it is my case.

I am planning in rebuilding my world and i am slowly doing it, first... was the acceptance.. the acceptance i lost all. The hardest was to accept i lost myself. Or at least the old JuanCa. I think i lost him. It was my fault. So i felt guilty about it. For you all my friends i am still the same... same nice guy... but for me... i am different. You won't understand it so don't force you Lol.

Once i accepted the lost.... i could spend few time with my personal sadness... few... cause i am not so much up for crying. But i have done it... few... sometimes reading other's blog... sometimes daydreaming about those old times when i was totally healthy, sometimes while looking around and feeling envy... envy because of thinking everyone around me is so healthy...and i am not.... and sometimes i cried while thanking to God for choosing me to face this... because i can now help others and give them a hand and a word of encouragement, like i did with you all before. One of the things i discovered with this illness... is that none can best understand someone who is ill and knows will die... than a person who is in same situation. There are several of us in the world and not all of them are lucky to manage the heavy weight on their shoulders, so i guess God needed a bit more of positive people in this side of the illness to help others.. and i am really up for it. It might cost me my life twice to be in this side... (as it already cost me my old life)... but it is a work that is worth doing it. I discovered a mistake in me right now... i haven't cried... i mean really cried. I have wanted to... at work, while walking downtown... in front of my computer alone... but i haven't done it. Just few tears dropped from my eyes..... God damn... i haven't cried... in any moment i will have to... i will have to let the tears inside flow. Perhaps alone....when i wont be afraid of letting me fall one more time.

With the acceptance of the lost, comes the assimilation... and assimilation sounds like resignation too... and resignation and assimilation gives you in some cases.. self forgiveness... at least in my case it did. And i thank God for it. Like my psychologist said.. "Listen... don't blame yourself cause you were not going through live looking for ways to die... that was not something you were looking for, it just happens... just by chance... it was in your path anyways... you don't have to blame yourself about it.. it is not your fault, nor your punishment... it is just a situation that occurred and that's all". Claudia my psychologist is really wise and so smart too. (and i never ever liked psychologist nor visited any... but she is really great, have been a big help).

Something curious... the devastation was so big... that i still cannot guess all the things i have lost... i know the superficial and evident ones... but while i walk more and more over the ruins this illness left in my world... i discover something new i will miss of my old me... and i feel sorrow again... and it hurts...and then i wonder one more time why this happened... and then... seat.... let the sorrow touch my heart... and i suffer... feel like crying... but i don't... and then i rise my face and accept it, and the whole process comes again. Thats where in the process i am now... after assimilation and acceptance i see a brighter world and that motivates me to change it. Lets re organise this i say... lets make a new world. I am experienced in this...AIESEC taught me, Russia gave me the strength... and life complemented with another lessons i will need for the rebuilding process that will come ... soon i hope. I still have to clean some of the things around....and sometimes i feel desperado about it, thats why i told the two AIESECers about what i have... cause the moment they asked me... i needed to explode, to scape from the ruins...needed to say to the world this happens to me. Desperation is still part of the process... i discover i need to talk, and surely i need to write. Don't talk to me about poems... one cannot make poems out of this... or perhaps yes. i haven't tried.

This is what i have to say at the end of my first week with a non curable illness.... you might have expected more clarity and less confussion in my thoughts... but you don't understand me. It was my world that faded away.... it was my life. I admit even myself though that after a week i would be ready to see everything different and more clear.... and after writing this and reading it back.... i accept a week is few time to overcome this. I am still human and i need to accept it. Accept it you too, please.

Tonight full moon brought me peace, to keep and stay in my new world and to be eager to have a good nap tonight. Sooo... i gotta leave you. There is so much to do tomorrow with my first day at hospital. That will help my world to go back to be the same... not in shape...but in power. My new world will be full of power to face everything... if i lost my life and myself...the old ones. What is left to lose? NOTHING!!!- Soo once you touched bottom line... is when you start to go up. And my life will start to go up soon. Don't worry about me, let this process be what it has to be. I feel good, i thought that i wouldn't... so good!! so good!!

kisses and hugs.

Labels: New life, same illness