Damaries Cruz: Deciding to Start Treatment After Nearly 20 Years of Living With HIV
March 30, 2011
I even cried. Your T cells, they are like soldiers; they help your immune system. But I felt as if they were my kids, waiting there, like, "What are you doing? What are you doing? Come on, help me." And I felt so guilty, so guilty, that I just had to say, "You know what? Help is on the way. I'm going to do what I need to do. Do not worry." Then I came back and I started researching HIV medications.
I never was against medication completely. I would say, "When the time comes, I'm going to research it." And you know, when that time comes, you do feel it in the core of your body, in the center of your soul. You feel it -- that it is the moment.
Now I'm taking my medications, and I'm not going to tell you that I'm not having side effects. The first few days I had nausea. I wanted to throw up, and I couldn't move a lot. But I think it was partly psychological, too, because it was a really huge step for me to take meds.
I'm taking Viramune [nevirapine] and Truvada [tenofovir/FTC]. I researched it, and I spoke to a lot of people that are positive, men and women. Because the medicine, just like the virus, works differently in women. I spoke to a lot of women that are just like me, that have always been holistic. This regimen seemed to offer the easiest transition, and be less toxic. And that's what I wanted. That's what I was looking for.
When I went to my doctor, I had a whole list of questions. We had a great conversation, and we agreed on this one. I was able to say, "This is what I want," and the doctor said, "OK." So that's what I'm taking.
I've been taking it for almost a month now. I'm not going to tell you that I feel great, because obviously, I have bronchitis. But I've been told that it takes a little bit of time, because my T cells had been so low.
I took time to listen to my body again, a week ago. I sat there and I visualized my T cells. I saw my T cells, very happy, sweeping away the ashes of the virus -- meaning, the pills are doing what they need to do.
Visualization definitely works for me. Definitely. I know I'm going to be crucified for this, because I got crucified before, but no matter -- I just tried to understand that my body needed help. And maybe eventually I'd even just like to stop it. But right now this is what I need to do. [Editor's note: Read more about structured treatment interruptions.]
The same way I opened my mouth before to speak, I do it now. Because I know there are a lot of people like me. They're scared to take medications. They're nervous about side effects, or they just don't want to take them, because they think they're poison, and all this stuff. But if you do your research, and you do what you need to do, and you eat what you have to eat, and drink a lot of water to flush all those toxins out, it's not that horrible. You just have to do your research. You have to have a great conversation with your doctor.
I still take all my supplements. I do the same things I used to do. I don't exercise, because I truly don't have the energy. The other day, I went and walked four miles and I was out for a whole week, because I was tired. I got so excited, walking four miles. My ex-boyfriend got me a punching bag. So that's awesome -- I'm so happy with it. I'd never done it, but there's all this energy that's inside of me. I used to punch the walls, because I've been so frustrated. I got bronchitis twice. I had shingles. I had shingles a second time at the end of the year, and then recently I had shingles again -- three outbreaks, one on top of another. I'm going insane. I need to release that energy somehow.
It does sound so frustrating. And additionally, punching with a punching bag is exercise.
Let me tell you: My arms are happy. My arms are very happy. I open the window blinds when I'm doing my punching bag, and I think my neighbors are scared of me!
You've mentioned several times the importance of talking to your doctor -- definitely when you're thinking about starting treatment, but really anytime -- and having a really good conversation with that person about your fears, and what you've researched. What's your relationship like with your own doctor? Does she support your use of holistic treatments, and talk to you about potential interactions with HIV meds?
Before I left for Puerto Rico in December to see my mom, I went to one of my good friends -- we met in the HIV field, and she's been a great person in my life. She knows a lot of people, and she works in a hospital. I asked her to recommend a woman gynecologist that specializes in HIV -- because of the warts. I have a great gynecologist -- my gynecologist is awesome -- but he doesn't specialize in HIV. And it's totally different. For the warts, he put acid in there twice. Now, that might work in a regular person, but not in an HIV-positive woman with 46 T cells. Mine keep growing, and they're all over; they're out of control. And he was getting frustrated because, of course, he doesn't know what to do. He said, "The only thing you can do is medication." But at that point, I wasn't ready yet.
So I went to my friend and I said, "I need the best woman doctor in Broward County that is willing to listen to me and that knows that I will do holistic stuff, too, and is OK with that." My friend just said, "OK, let's go across the street." We just crossed the street, and she introduced me to this doctor.
The first time I met her was even before my first appointment -- the appointment where I was going to talk about medications and say, "This is what I want." Before that, she had to send me to the emergency room, because I had bronchitis. She was so great on the phone, and she was in the hospital.
She's well known. She's great. She cares about her patients. She takes some time to listen. When I went to my appointment, I went with a support system. It was such a hard decision for me that I needed to take someone that is like my mother here; and my friend from the hospital also went with me. We were three people in there asking questions. It's good if you go with someone, because if you are nervous, this other person can cover and ask the questions that you might forget. If you write out your list of questions, this person can look at your list and ask the questions for you.