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Coordinating Long Term Survivors:
I was diagnosed in 1987 living half my life with HIV. I am interested in connecting with people who are also Long Term Survivors. I have searched the site and have found quite a few. We are so few and far between it has been hard to find others who have been through the journey we have experienced. Having lost so many friends in the 80 's and 90's plus being diagnosed myself has made me feel survivors guilt and PTSD. Looking for others who have experienced some of the same and like to set… read more
Answer Summary
Members who have lived with HIV since the 1980s connected over the profound experience of being long-term survivors, sharing stories of losing... Read more
We all need to keep sharing our ideas, desappointments, solutions & all the other items that come in between, so wee can make it known that we are watching & listening to those who have the power to improve or cut us out all together. We have keep fighting so the world doesn't keep thinking that we are cured.
@A myHIVteam Member I once had Prezista and Norvir in my meds, and the Norvir caused so much diherria my doctor said there is now a combination pill that is just as safe and effective as both called Prezcobix which is Prezista and a gentler but just as effect booster call combystat (tyboost) You could reduce your meds to 3 by taking prezcobix. I was a little afraid to change at first after taking Norvir for so long but now after almost 2 years, it is just as effective. Just a suggestion. (sorry about misspells)
Like for many the early 80s and 90s were a time of uncertainty, fear ,death as well as guilt . I too experienced the survivors guilt as I watched so many friends and associates succumb to a disease with three letters. I've come a long way since 1986 and I finally feel some freedom over the once daily worries about whether I would survive. I can truly feel blessed and gratitude that three decades later I am here to share my journey and look forward to the future.
This has been a long journey for us long termers, those who haven't been through it don't really comprehend. I don't think I know any one diagnosed before 1980. You have endured so much through your journey. Much more than anyone should. But obviously you have an inner strength keeping you going. That is why I am hoping long term survivors on this site can create a support system for one another. What ever the case I am here for you. Hope to stay in touch. Jeff
I was dx in 1986 with the first and only true live of my life. He would die from AIDS 6 years later. I will never forget him or the so many other friends that have died. I even tried to hasten the process for myself after DeWayne died. I became addicted to shooting cocaine and drinking a lot. The meds kept getting better and to make a long story short, I am still alive at 57 and pretty freaking healthy, thank God.
What are you doing to celebrate Long Term Survivor’s Day?
Any hiv+ members long term survivors like me?
Will you be doing anything to honor/celebrate HIV Long-Term Survivors Awareness Day today June 5?
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