January 13, 2009
What has been your overall experience with HIV treatment so far?
I have been taking HIV medications since 1992. Many of the early regimens I took were very toxic to my body and I had many side effects over the years. One drug caused ulcers in my colon and an abscessed hemorrhoid that I needed surgery to fix. All of the meds cause diarrhea, so I have had continual problems with that for 12 or 13 years now, every day of my life. Neuropathy in my feet, nausea and fatigue are also constant companions for me.
What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?
My last CD4 was over 600, so that is good. Viral load is currently 257, that is good too. Previously I had two times in a row where my viral load was non-detectable. That had never happened before. So I would like to get down there again.
Back when my husband and I were first diagnosed in 1985, the tests were not as sophisticated as they are now. So my overall white cell count was elevated, showing signs of some type of infection. I believe my T cells were over 800 at that time. They were not able to measure viral load way back then, so I do not have any idea what that number was.
What HIV treatments have you been on, if any? What are the toughest side effects you've faced on treatment?
There is no way that I can remember the names and dates of all the meds I have taken over the years, but one point sticks out in my memory. In 1998, I got remarried. At that time I had been on ALL the medications that were currently on the market. I had either had an allergic reaction, my virus became immune to the meds or they became toxic to me. So I had no new medications to move to and my viral load was over 2.5 million. That was a very scary time for my new husband and I.
Lucky for me, the protease inhibitor class of drugs became available around that time, so I began a combination therapy that included one of those. That made a huge difference in my life. It brought my viral load way down. The unfortunate downside has been malabsorption and lipodystrophy. My body now looks like a scarecrow -- broomstick arms and legs and my face has lost all of its feminine contours. I appear skeletal except for my abdomen, which is very distended.
Not attractive to say the least, but I am alive and that is the most important thing. I am blessed in the fact that those who know and love me don't look at my physical appearance; they love me for what is on the inside.
How often do you see your doctor? How did you choose your care providers?
I see my Infectious Disease doctor every four to five months. But I have several other specialists who I must see in between those visits, so I go to the doctor once every couple weeks on the average for one problem or another. When you've been living with HIV infection for 20 years, your health becomes very complicated to manage.
I find my care providers by talking to other people. I have found most of my doctors by networking with other HIV-positive people or other doctors whom I trust. In the hemophilia community, we share lots of information with each other about treatments, doctors, complementary therapies, etc. This is a great way to find out about new things so you can speak to your doctor more intelligently.
What kind of relationship do you have with your care providers?
All my current care providers are people who I trust with my life, literally. They listen to me and don't make me feel like I bother them with questions. This is a necessity for me.
In the past, I have had to fire doctors who felt that because I wasn't a doctor I should not be asking them questions or telling them what side effects I was having. My belief is if a doctor doesn't listen to me, he won't be able to treat me effectively. My favorite line for a dismissive doctor is, "You don't live in here. I do. My body is speaking to me and I have to listen to it."
Do you have any health/wellness regimen that you feel helps you keep healthier?
I love to sing and dance. I also sculpt figures in clay -- which has helped me a lot since my father's death in December. It brings out a lot of stuff I didn't know I was still carrying around. I found that not everything has to be said out loud to be cathartic.
Any adherence tips for other people on treatment?
It is hard to continue taking meds that make you sick, but you can't play around with compliance. People often don't realize if they take their meds one day but then don't take them for two days, they won't work. In order for HIV meds to do what they are meant to, which is keep the virus from replicating, you must take them as directed. This sometimes means on an empty stomach, or with plenty of liquids or perhaps on a full stomach. As long as you follow these guidelines, the meds usually work well. If you suffer from nasty side effects, talk to your doctor. They can often give you something to take care of that. Taking vitamins can help neuropathy, for instance. Don't be afraid to be open with your health care providers in this regard.
How has your dating experience been since you were diagnosed with HIV?
I've remarried now, but I was single for many years. I was diagnosed at 26 and lost my husband at 34. I don't think I even made eye contact with men for the first year after Mike died. I felt like we'd made a pact when we got married. Then he died and left me alone here with this infection and who was going to want me? Eventually I dated another HIV-positive man, another hemophiliac from the support group. He died. I decided I couldn't do that to myself or my daughter again, and I probably wouldn't have dated anymore if I hadn't reconnected with a man who'd lived on my street when we were growing up. He was living in Canada, but he moved back here and we got married. We'll be together seven years this year, and our relationship is wonderful. We understand each other.
Who would you dedicate this award to, if you could?
No one person -- I'd dedicate it to all the people who inspire me. Some of those people have died from this disease, and some from other things. My husband Mike, because it took a lot of balls for him to go public that day he was working in a field where he was recognizable both nationally and internationally, and therefore he had everything to lose. But he felt it was important to speak out, so he did. And I'd definitely dedicate it to my daughter -- she's why I continued living after my husband died, and she's an inspiration to me every day of her life.