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Personal Perspective
Shit Happens and Then You Go on Meds

By Susan Rodriguez

Winter 2000/2001

When I was first diagnosed HIV+ in 1995, I had to take a crash course in learning about HIV as well as having to deal with the emotional and mental issues surrounding my status. At that time, there were a limited number of antiretrovirals available. Through my reading and speaking with healthcare providers and treatment activists, I decided to hold off on taking any of these medications. Instead, I emphasized strengthening my immune system by eating better and using vitamin and mineral supplements. My physical health and blood work remained stable with this regimen for about three and a half years.

It was important to me not to feel like I was sick. For me, taking medication was representative of being sick. I had a wonderful doctor who listened to my concerns and respected my decision not to start therapy. As the protease inhibitors came onto the scene and guidelines for initiating combination therapy became available, he and I discussed them. I felt that there was not enough long-term data, especially in women, to know what the effects of these drugs might be. I was feeling okay physically, and I did not want to have to deal with possible side effects. My hectic lifestyle -- running around as a mother of three kids and a lot of activism and advocacy -- the strictness of the drug regimens, and the potential side effects played into my decision not to take anything. I knew that if and when I started therapy, it would be a well thought out, informed decision made with my doctor.

Quality of life for me meant that I was feeling physically well, taking care of myself holistically and not being reminded about the virus by taking medication. Problems arose when I forgot to take care of me -- missed medical appointments, not eating right, forgetting to take vitamins, smoking, not exercising, and being involved in stressful situations. My physical fitness slowly declined -- I was tired more, suffered from frequent respiratory problems, and wasn't feeling right physically or mentally. My lab results reflected this decline -- CD4 count down to 188, a CD4 percentage of 10%, and viral load at an all-time high of 150,000. I was ready to commit to a regimen, one that my doctor and I felt would suit me in terms of optimal viral suppression while also being relatively easy to take with minimal side effects.

"While my current lab reports reflect an intact and improved immune system, I gauge my quality of life on how I feel."

Fortunately, the therapy I started did not cause serious side effects, except for diarrhea in the morning and skin rashes, both of which subsided after a few weeks' time. I was prepared to deal with the possibility of these side effects and didn't let them interfere with my desire to obtain maximum health benefits from the meds.

I have been on the same regimen for a year and a half now, and I can honestly say that it has not impacted my life detrimentally the way that I thought it would when I wasn't ready to be on medication. Yes, I have some of the longer-term side effects such as peripheral wasting and high cholesterol, but these have only prompted me to start taking better care of myself -- exercising regularly, eating properly and integrating complementary therapies into my health plan. While my current lab reports reflect an intact and improved immune system, I gauge my quality of life on how I feel. And I feel pretty good -- less tired and less frequent upper respiratory ailments.

I made an educated and informed decision about my treatment, one that I was ready to commit to because I was mentally, physically and emotionally comfortable with it. Since I was able to do that, I feel I can deal with any problems that may arise.

Susan Rodriguez is a woman living with HIV, breast cancer survivor and mother of three children. She is President & Executive Director of Sisterhood Mobilized for AIDS/HIV Research & Treatment (SMART). She is also currently working on obtaining recycled pediatric medications for children living with HIV/AIDS in Latin America through Aid for AIDS' Kids Project.

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