HIV, Gas, Multiple Sclerosis, Cancer and Happiness
Part of the Series Other Sides of HIV: People Taking HIV Meds Share Stories About Side Effects
All of my friends were dying. Too many young lives lost and still no real information or reason. I found out I was HIV positive in 1993 and can almost pinpoint the night in 1980 when I was infected. I have been in a monogamous relationship since 1982 and that is what saved my life.
They tried to poison me first with massive doses of AZT [brand name: Retrovir; generic name: zidovudine], followed by other cocktails of equally bad stuff. There was this one, ddI [brand name: Videx; generic name: didanosine], that you had to chew up an hour before taking food; it was like a mint-flavored piece of chalk. For the first five years, I thought I was going to die as all of my friends were on the same meds as me and they were not working. I remember thinking, please not another funeral, especially with the family denying the root cause: HIV/AIDS.
Jump ahead a few years and the cocktails changed and consisted of six or seven different pills, all with their own side effects, fatigue and flatulence. And I was still dealing with the stigma associated with the disease. Now, I am taking just one pill, Stribild [a coformulation of the drugs elvitegravir, cobicistat, emtricitabine and tenofovir], and I guess I have gotten used to having to go find someplace to fart every afternoon.
In 2007, I found out I had multiple sclerosis [abbreviated MS]. So, more meds and no information or studies of MS and HIV patients and mixed meds. Three weekly interferon injections for seven years. At least that is over for now. MS, stay away!
Last year, I learned of another side effect that seems to be overlooked: Long-term use of HIV meds tends to help clog the arteries, so in 2014 I had a heart attack due to 97% arterial blockage. A stent brought me back to life, but then I found out two weeks later that I had cancer.
As luck would have it, the chemotherapy for the cancer did a number on my T cells, but totally put my MS in remission. Now I'm only taking Stribild and cholesterol meds and I feel better than I have in many years. My doctor says I am an anomaly and I am his hero.
No one I work with or socialize with knows my HIV status. The stigma still scares me. I don't want to be rejected, so I put on my game face and go about my business. Now, my concern is growing old with HIV since no one knows what to expect or how to extend care and support. I still count my lucky stars every day. If I had only known back then what I know today, I might be telling a different story.
I'm thankful to my partner and husband of 35 years for sticking by me and giving me full support. Maybe one day soon I can confront my own stigma and try to remove it from others.
Want to share your "Other Sides of HIV" story about dealing with side effects, good or bad? Write out your story (1,000 words or fewer, please!), or film a YouTube video, and email it to email@example.com. In the coming months, we'll be posting readers' "Other Sides" stories here in our Resource Center on Keeping Up With Your HIV Meds.