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Joyce
Well ... what a concept ... long term survivors ... yes we do exist!
I found out I was HIV positive in 1986. I expect I acquired the virus in 1984-1985. I was tested at the local health department and was also given a number. The number thing does not bother me.
I remember sitting on top of a mountain ... looking out over a beautiful valley ... crying my eyes out ... thinking I was given a death sentence. I was 25 years old ... alone .. scared ... without a support system. I went into denial and lived life on the edge. Heavy into drugs and alcohol ... to cover my real fears. I would have to say ... I did not think about it alot ... but then again ... as I stated ... I was heavy into drugs. I never sought out medical care. Today, I am glad I did not. AZT was the bandaid at the time. I am sure I would have been advised to go on AZT ... but ... as life turned out ... I did not ... and I beleive that was a good thing.
I know people today ... that do not have any syptoms ... except side effects from meds ... that were treated in the late 80's with AZT ... and they are still on it ... even though they have not had a high viral load ... and no sign of TCells dropping ... I feel sorry for them that they had to go that route. I ask them ... don't you ever think about going off your meds ... since you have no symptoms ... fear keeps them stationary. They follow blindly rather than forging their own path. In the early 90's ... or so ... we began to hear about long term survivors. I did not give it much thought. I had disclosed my condition to a few people ... it was always the same responce ... what a miracle ... and I do feel that way myself. I became pregnant in 1994 ... again in 1998 ... I did take AZT during my pregnancy ... it has been proven to reduce the risk of transmission ... both of my boys are HIV negative. I received alot of negativity from folks around me when I became pregnant. Are you willing to bury that baby? That was one of the comments a "friend" made. I have been HIV positve for 16 years ... asymptomatic ... no meds. I enrolled myself in a study out of Boston ... I have a rare molecule in my gene structure called P24 ... a molecule associated with rhumatism ... big deal when I think of the other alternative ... not having this molecule. This P24 is common in long term survivors. You may have it yourself. I would be interested in knowing that ... you did not mention it on your sight. Do you know about P24? Do you know that we are a 1 percent population out of the total HIV/AIDS population? When you think about it ... it is like winning the lottery ... a lottery on life ... people die from this disease. I agree that meds are not the best ... but people do die from the disease. We should feel blessed that we are amongst the group ... long term survivors.
It is interesting that I found your site. I have been thinking about going public myself ... 99 percent of the world do not know folks like us exist ... the general consesus ... HIV ... is AIDS ... is death. I feel so strongly that this needs to come to the frontline of society. People like us hold clues!!!!!!! Clues that could help find a cure!!!!!!!! Oh yeah! Pharmacutical companies are not putting much money behind that ... it does not take a rocket scientist to figure that one out ... AIDS is big business ... right?
So ... were you part of the 20/20 special? If so ... would you tell me more about it? I have just recently sent off a letter to OPRAH ... telling her of my story ... but ... I do feel this is controversial and most people probably do not want to touch it. I want you to know that I would be interested in working with you to bring this in the public eye. Have you heard anymore info on when they might air this show. Please let me know. I am facing the docs wanting to push interferon on me now ... I have Hepatitis C. I have done alot of research ... even though my liver seems to be giving me more trouble then my HIV. I hesitate to take interferon ... the success rate is like 40 to 60 percent! I have turned toward a holistic approach ... that is working for me now. I want to see what kind of research they come up with on co-infection before I put that poison in my body. I have to believe ... my own intuition. I am clean and sober myself ... have gone back to college ... just trying to live life ... at one point.
I was apprehensive about sharing my story for fear that my boys would be looked down upon ... I say to hell with shame! I've had enough of that! Now I want to speak out ... for my boys ... so they learn that this isn't shameful ... it's life ... and how you deal with it is what matters. I want them to be proud that mom took a stand. I am taking a public speaking course at school ... it is my strong desire to speak out nationally. I do not know how to go about that ... but I know I will. I would like to hear back from you as soon as possible. I am anxious to know more about what you do ... and about the 20/20 show.
Sincerely,
A fellow long term survivor forging ahead ...
Joyce
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