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I've survived AIDS, kaposis sarcoma, a near-fatal car accident, a mugging...a t.i.a. stroke, Stage 3 kidney failure, a heart attack & two stents (Susan Lucci, take care). I take my HIV regimen religiously, including depression meds. My viral load has been undetectable for over 3 years now. I so wish the Clinical Trials Group would at least use our massive amounts of data, 30+ years worth, to see for correlations, if any. Use our data! PLEASE????
Am 64 and have been poz since about 1979, when docs noticed my lymph nodes were swollen and would not return to normal. Was later diagnosed with HIV. Fought early and hard to gain access to every drug, including devastating but life-sparing D drugs and AZT. My friends who did not all died early, save one, who was a slow-progressor. After taking virtually class of drugs (had resistance to some I'd never taken), I found my way to Trogarzo. Just got news that I am virus-negative. Humbling.
This past year I lost my former partner of ten years to AIDS. He was diagnosed in 1992 with HIV and AIDS within the following year. He followed his doctors advice, was on ART/HAART, excellent access to medical care, positive outlook on life, exercised, and maintained an active social life. Unfortunately, the virus mutated around all of his treatment options. Without any medications to suppress the HIV virus he suffered a long battle before finally passing. We need more salvage drug options.
This year I lost my former partner of 10 years to AIDS. He was diagnosed in 1992 with HIV and a subsequent AIDS diagnosis within a year. He was in care, followed the recommended HIV treatment guidelines, exercised, and maintained a positive attitude about his future. Unfortunately, the virus developed resistance to the numerous ART/HAART medications he was prescribed over the 26 years he lived with the virus. He ran out of options. We need more salvage drug options.
I definitely struggle with being poz. I'm a private person and have only told a few friends about it mostly because I want to control people's perception and judgment of me (that goes back a long way). Have engaged in therapy and have had definite breakthroughs but this sh*t goes deep. I think getting older also makes it harder. Grateful for my dogs, a few trusted friends, the ACA (!), my music, books and that I've had more time on the planet thanks to the people who fought so hard.
As of late, there is barely a day that goes by that I don't consider going off meds. It's been well over thirty years now. Being in my fifties has compounded everything. The many close calls, neuro issues, fatigue, nausea, metabolic issues, depression/anxiety, loneliness, frequent infections, weak bones, med's, chronic pain, ad nauseum. It's understandable to me why people make a conscious decision to end things. While I consider myself a warrior, it's a full time job that's worn me thin.
No one understands what life is like for someone who has been living with the virus for 27 years unless they too have lived with it for so long. There is no support and some days I wonder how soon the day will come when I will be very sick and pushing a shopping cart down the street with my belongings in it until I am lucky enough to finally expire. I wish my life was like an advertisement for the latest HIV medication, but it isn’t and never will be.
Joevegas75
I couldn't help but cry when I read this article regarding the 7,000. I can agree, that as a man living with HIV, there is a constant battle to maintain self help. I am fortunate to be undetectable, but support to continue this struggle is ALWAYS needed. Constant changes in health plan guidelines, employers that request FMLA certification paperwork every 6 months, or discipline for self well-being are reminders that you are constantly fighting the monster inside you. I see how those 7K happen.
September 2, 2019 • Las Vegas, NV