Nomad JuanCa's Report

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