When I Started HIV Meds: Step by Step on a Difficult Road
August 17, 2011
I was diagnosed with HIV in July 1992. Before starting HIV treatment, my T cells were 868 and I was in great shape, but I was angry at myself for trusting my husband and not wearing protection. I thought I was going to die, and I looked at my life from a different point of view. I started to hang out and drink. I didn't keep a good health regimen. That was the most ignorant decision I ever made. Due to that choice, my T cells went down to 0. I got tuberculosis, neuropathy, wasting syndrome, and had Pneumocystis pneumonia (PCP) four times.
I've dealt with many challenges: drug abuse; alcoholism; domestic violence, psychological and physical (coming from a dysfunctional family where my dad, an alcoholic, always beat my mom, I've had boyfriends and girlfriends who used to hit me); no support system; and all the stigma. I buried my sister and two brothers; I lost all three of them to AIDS. I lost my mom to breast cancer. I felt alone. I run into many people who feel the same. But you know what? All these obstacles helped me get stronger and always come out on top.
My doctor started giving me many different meds until I found one, or five, that worked. When I started taking medications I did not adhere to my dose (another stupid choice ... it's difficult since you're not accustomed to taking so many pills daily). I became "MDR," which stands for multiple drug resistance. It was very difficult; I was angry at myself for not adhering to the medication. I had to wait for a clinical trial that fit my criteria in order to participate (that experience was a horror, since you feel like you're running out of time).
I do want to say that HIV treatment has allowed me to live longer. I have been taking Epzicom (abacavir/3TC, Kivexa), Intelence (etravirine), Isentress (raltegravir), Norvir (ritonavir) and Prezista (darunavir) for the past two years and I would not change anything. They have helped me live a well-adjusted life.
My son was 9 years old when I was diagnosed, but I didn't disclose to him until he was 12 years old since I didn't want my condition to interfere with his school work. I wanted him to concentrate on going to school and pursuing college. I did not want to leave him alone. Today he's 27 years old; he graduated with a bachelor's degree and has a great job in the financial sector on Wall Street. He is happy to see that I'm still alive. He has his own apartment, car, a great circle of friends, and he travels a lot. We go out to many places together and celebrate life; we just celebrated July 4th in the Poconos.
I raised my son with great values. He doesn't do drugs or alcohol, or smoke cigarettes. I'm so proud of him; my circle of friends and family are always telling me he's such a good son. He is my greatest support system; he inspired me to do what I do today. He used to tell me a lot of times, "Mom, why don't you go out there and do something -- rather than complain about it?" So I took his advice! I changed my lifestyle, went to school, got a job, and now I love helping others empower themselves. I have done everything I wanted to do prior to getting the virus. I have gone on a vacation, on a cruise, horseback riding, and in August I'm going away again.
I have received awards for what I do, and hope to God I can help end this epidemic and get people to listen and practice safer sex, to keep as many as possible from getting infected.
I would advise people just starting HIV treatment to seek help in maintaining a healthy lifestyle. Seek a support system. Attend groups, listen to what others are saying about their experiences, ask for suggestions, ask questions, be very curious about the different types of medications and their side effects. Ask your doctor to help you find the medication that will work with your lifestyle (for example, if you're active and always on the go, get a medication that's taken once daily). Take into consideration what will work for you.
Reevaluate your priorities: What is important to you? Living a healthy life? Hiding and living in denial for the rest of your life? Do you want to be happy or do you just want to make others happy? It's all about you; you are living with a virus that can be easily controlled but you need to make the correct choices; seek help in making these choices.
I hope I can help others make a wise choice, and a healthy one. AIDS is not a disease; it's an adjustable lifestyle that can work for you if you make it work.
Lillibeth Gonzalez works as a peer health educator at Gay Men's Health Crisis, Inc. (GMHC), one of the world's first and largest providers of HIV/AIDS prevention, care and advocacy.
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