Living with HIV -- A Survivor's Perspective
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 1,200mg 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 600mg 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.
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 every day 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.
Living with the Side Effects
My medications cause myopathy, which makes my muscles ache, and neuropathy, which affects my nerves so that sometimes I can't feel my feet when I walk, and my fingers and toes tingle. I've been in pain for the past couple months, but I've found ways to ease it with pain medications, acupuncture and regular exercise.
I'm willing to deal with my side effects for now because my medications are working, but there are days when the battle fatigue is so strong I don't want to take another pill. What keeps me going is knowing that being 100 percent adherent to my medications gives me the best chance of living longer with HIV.
The mental strength to stick with my drug regimen comes from the memories of what I witnessed in the early days of HIV and AIDS. I saw the virus devastate the lives of my friends and my community. I was around when physicians and scientists were frantically looking for something, anything that could help the people who were dying. When antiretrovirals were created, I jumped at the chance to take them. I haven't looked back and I've never missed a dose.
To make sure, I put my medications in pillboxes designed to hold all the pills I need for seven days. I fill these pillboxes once a month so I can have them when I need them. I keep a pillbox next to my bathrobe so that every day when I wake up, I see them and remember what I have to do.
Embracing My HIV Status
Despite the side effects and the schedule for my medications, I try to live as normal a life as possible. I can't afford to get sick again, because I've got to spread the word about HIV at schools and to anybody who will listen. There's not much publicity about the disease these days -- no nightly stories on the news about young men and women who have died a ghastly death from AIDS. People need to be reminded that people still die from AIDS. Today, some young people think HIV is not such a big deal, kind of like high blood pressure -- something you can control and still lead a "normal" life. It's as important as ever to prevent infection with HIV.
For people living with HIV, it's important that they know HIV can be treated. HIV-positive people must stop feeling guilty about contracting HIV and seek medical help, including one-on-one counseling to help adjust to a new life. HIV is a tough disease with a lot of rules, but if someone decides to begin antiretroviral medications, then drug adherence is one rule that must be obeyed.
Once HIV-positive people accept their status, I believe it's important to become involved in support groups. Support groups provide a safe place for us to express ourselves, gain insights from people who are dealing with the same issues, and remember we are not alone. It has helped me to become involved in helping others with HIV and it reminds me that my life is important and has a purpose. I serve on the board of directors of two AIDS service organizations in Boston, and participate in many AIDS education programs. I feel good knowing that I'm helping others.
When people are diagnosed with HIV, they have two choices: fight or give in. I chose to fight and I've never regretted it.
David Morris, 47, has been HIV-positive for 17 years. During that time, he has tried and failed numerous drug regimens -- complex and challenging regimens. Despite that, David is a long-term survivor who looks forward to many more years.
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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.