What If Life Is More About Trying To Survive AIDS Leaving No Substantial Quality Of Life: | myHIVteam

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What If Life Is More About Trying To Survive AIDS Leaving No Substantial Quality Of Life:
A myHIVteam Member asked a question 💭

For some Long Term Survivors like myself living 30+ years with this disease and all that has come with it, life now consists of constant doctors visits, monitoring, procedures, surgeries at a much more accelerated pace than ever before. I have friends in the same boat, some who, like me,.suffer from depression as well. The question is when to draw a line in the sand when HIV is dictating your life and quality of life becomes less and less. A harsh reality for some. Hope for a break in the… read more

posted August 1, 2019
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A myHIVteam Member

Good Morning Jeff. First of all I would like to let you know that I think You're a Handsome Man in the Pic that You Posted. Now on to your Question. I too am a "Long Term Survivor", I was diagnosed in the early 80's when they didn't even know what to call the Disease. Do you remember things like "The Gay Cancer", or "GRID" (Gay Related Immune Deficiency/Disease), and lets not forget that Poison "AZT"!! I've seen a lot of Friends Die in Horrible Ways. The Depression is still there. I recall about 15-years ago I was on the Death Train. My thought was that there will Never be a cure for HIV, that the Pharmaceutical Companies are making Billions/Trillions of Dollars just keeping us alive. I felt that what's the point of going on. I should not be Walkin & Talkin after all of the abuse I put my body thru. Then there is that mental block of filling my Med Trays each month. I couldn't stand the smell of all of those drugs, so I would go months & months without filling my Med Trays, thus I wasn't taking my Med's at all. When I was 48-years old I had a "Major Heart Attach". I didn't even know I had one. I ended up having "Quadruple Heart Bypass". At that time my Viral Load was well over 2-Million, & T-Cells were in the Single Digits!! I had to wait until I became Undetectable before they would go on with the Surgery. Amazingly enough it only took me 5-6 weeks to get back to undetectable. A Fucking Miracle!!! Needless to say I went though with the surgery. Came out of it like a Champ. I was only in the Hospital for 1-week. That was 7-years ago. I've been Undetectable ever since, but still on my Med's. You are Right!! those of us who are "Long Term Survivors" have had that thought of why keep going?? Let's get on with this. If Heaven is such a Beautiful Place and all, I'm ready. Take Me Now!! I'll drink the Kool Aide. I'm single now, the only things I have are my "Boys", Cats. I'm Lonely! My phone Never rings, and it's very difficult to get out there and try to meet someone. Very Depressing! The side effects of the Med's Suck!! I understand about drawing a line in the sand. Back in April I was in the Hospital Jail for a few days. There are those people that just don't get it. They can't Relate to what we have actually gone thru. I'm Sorry for Writing a Novel. I guess you struck a nerve with me. Oops!!

posted August 1, 2019
A myHIVteam Member

In the same boat as you as a long term survivor since 1991. As you said, we just have to keep pushing along. Going on a trip next week, and Italy next year. I just give thanks we are still here. Have a great trip!

posted August 1, 2019
A myHIVteam Member

Thanks for everyone's response to this question. Still shows HIV is a very individualized disease even with Long Term Survivors. Our stories are different.
I think for me my body has been through enough and is telling me so in a big way.

posted August 12, 2019
A myHIVteam Member

I applaud all LTS, people forget what you guys have been through to get where we are now. I’ve only been diagnosed 21 years and initially did a clinical trial for abacavir for 2 years - 30-odd tablets a day with many restrictions, along with my AZT/3TC - I’m not sure if this is why my body feels it’s failing. I constantly have medical appointments and investigations for numerous things so can relate to the question you ask, although I’ve not suffered as some of you have. It does make me wonder sometimes, a failed overdose last year wasn’t even because of this, only due to a side effect of another (new) med. But I do know we wouldn’t have had these medical advances without you, thank you.

posted August 4, 2019
A myHIVteam Member

Quality of life hmmmmm a darn good question. What exactly does that mean? Life for me was altered the day I found out I have AIDS and was about to die. I basically had no good cells left with a CD4 count of 20. It has taken me almost a decade of ART medications to get my count up to over 800. My love life ceased, sex life killed and personal relationships destroyed by my having the virus. Plus my own journey through the stages of grief about dealing with the altering of my life.due to HIV. I am a strong person who has faced many challenges in my life but surviving an illness that took 7 best friends all within a year makes you wonder why it is you that survives. Guess my purposecis yet to be revealed.

Van

posted June 17, 2020

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