I am a 48-year-old woman of color, a mother of two and grandmother of two. I have been a widow for 3 years. In 1987, when my husband of 23 years was diagnosed HIV-positive, he basically stood in the closet for 2 years. I was not diagnosed HIV-positive until 1990 and they just gave me a prescription for AZT and a booklet and sent me home to deal with it on my own. I went into shock so much that I don't even remember what side effects I had.
In 1993 I was diagnosed with AIDS. My T-cell count was dropping and my viral load was sky high so they put me on Epivir (3TC) and Zerit (d4T). Then I had to deal with the upset stomach and heartburn while still being a mother, grandmother, and wife. My energy went down, depression settled in, and then an ulcer, so I lived on Zantac.
A few years later I started having unexplained weight loss and my blood work showed a resistant virus, so I said to myself "NEXT." Next was Crixivan and more heartburn and more Zantac. I also went on Viramune. Then my stomach got bigger and my body shape changed. But my viral load was undetectable and my T-cell count was up.
Meanwhile, in addition to caring for my children I was caring for my husband who was now in the advanced stages of AIDS and cirrhosis of the liver. Just before my husband died, I lost my dad and my husband's dad, who I was also taking care of, and 10 months after my husband passed, his brother shot himself. Grief and depression set in and my blood work started acting up. I said to myself "NEXT" and went on another regimen -- Norvir (ritonavir), Fortovase (saquinavir), Videx (ddI), and Viramune (nevirapine). I came to know the bathroom very well!
I developed neuropathy, besides already suffering from fibromyalgia and osteoarthritis, so I live with chronic pain and sleepless nights. To cope, I got into meditation, massage, pool therapy, and stretching. And for a while my viral load was undetectable and my T-cell count was stable. But then Norvir was discontinued in capsule form and I had to take it as a liquid. It had an indescribably awful taste that forced me to stop taking it. I stopped all my medications so I wouldn't build up resistance. I didn't have too many choices of meds left. But after a few months my viral load was up and my T-cell count dropped so I started taking meds again.
This time I started with Fortovase and Viramune because I hadn't developed resistance when I stopped them all together. I also picked up Viracept (nelfinavir) and Ziagen (abacavir). Taking Viracept with applesauce made it go down easier and kept it from dissolving before I could swallow it. I was taking 22 pills after breakfast and 23 pills after dinner and 6 more to help me get to sleep.
After a few months of this I started gagging when I looked at the pills. I felt like a walking chemical factory! I went to my healthcare provider with my concerns and together we came up with something I was comfortable with. The problem with the Novir got fixed so I was able to go back to it. I am also on Viramune, Fortovase, and Ziagen.
During all of this I had no one to turn to because my family all lives on the East Coast. Without help from BABES, NWFC, STEP, and the Madison Clinic I don't know what I would have done. They are my family. They made me feel that I was special and I was not alone. If I had to do it over again, I would -- because I want to give my family more time to spend with me.
This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Perspective.