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My AIDS drugs make me sick,
but I take them anyway. It would be great to take a “drug
holiday,” but I don’t dare because I don’t want my viral loads
to skyrocket and I don’t want my virus to become resistant
to my medications.
Sometimes I get tired of
taking my medications, which are little daily reminders that
I have a disease for which there is no cure. I miss not being
able to drink my morning coffee until I’ve eaten my breakfast
and taken my pills. I miss the freedom of being able to come
and go as I please without worrying when and where I’ll take
my medications. But HIV doesn’t take a holiday, so neither
do I. It’s difficult, but it’s worth it, because I’ve seen
what can happen when HIV-positive people don’t take their
medications [or don’t have access to medications].
The early years of the
disease
My 20s and 30s weren’t
as carefree as I thought they would be. I suffered while I
watched the deaths of more than 50 friends from a mysterious
disease that was then called “gay cancer” or gay-related immune
deficiency (GRID). I saw them go blind. I saw their bodies
covered in lesions caused by the AIDS-related cancer Kaposi’s
sarcoma. I saw them die horrible deaths, with no medications
to help ease their pain.
When I was diagnosed in 1984,
I was scared. Although I had witnessed the power of HIV first
hand, I suffered in silence for the first year. I was afraid
of letting the world know my status, afraid my co-workers
would shun me, and afraid that my medical insurance would
drop me.
When I finally got the courage
to seek treatment, I had to battle the ignorance and prejudices
of the times. In the early days of the virus, there were physicians
who were just as afraid of AIDS as the general public. In
1985, I at last found a physician who was familiar with infectious
diseases, one who understood my disease and my desire to fight
it. That physician prepared me to battle HIV.
Participating in Clinical
Trials
Later that year, I
agreed to participate in a clinical trial of AZT (zidovudine),
the first antiretroviral medication. For nine months I took
1,200 mg of AZT every day, which was the dosage approved by
the FDA in 1987. The side effects were awful. My ears rung,
my joints ached, I felt anxious, nauseated and like I was
in a fog, but I stuck with it because I knew death was the
alternative. I wasn’t ready to die.
It was the experience of
patients like myself who eventually gave doctors and researchers
the clinical information they needed to determine that the
appropriate dose of AZT is 600 mg daily [approved by the FDA
in 1990]. I continued on AZT and participated in other clinical
trials. I did what I could to keep my viral load down to prolong
my life.
Cancer Scare
In May 1995, I was
diagnosed with Hodgkin’s lymphoma and had to discontinue all
of my antiretroviral medications. I underwent months of chemotherapy
that left me feeling like I was living in a dead man’s body.
However, after nearly two years, my cancer went into remission.
I immediately resumed my
fight against HIV. After so long without my antiretroviral
medications, my T-cells had dropped drastically. In 1997,
I resumed the antiretroviral medication that had been working
for me before my cancer diagnosis. But, this time, my viral
load continued to rise and my T-cells continued to drop. My
virus had mutated and become resistant to the drugs. I had
to switch medications.
In 1998, I started a new,
triple drug therapy and I’ve been on this regimen ever since.
I take my medications three times a day, seven pills a day,
seven days a week. It’s not easy, because the side effects
can be debilitating and the pills are a constant reminder
that I have HIV. But I know that I must take my pills everyday
for the rest of my life, no matter what. I know firsthand
what it means to have “AIDS battle fatigue,” but I continue
to take my pills because I’m not ready to give up. I want
to stay alive.
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