Damaries Cruz: Deciding to Start Treatment After Nearly 20 Years of Living With HIV
March 30, 2011
When Damaries Cruz was first interviewed by TheBody.com, in the fall of 2008, she'd just participated in a groundbreaking HIV awareness campaign for Spanish-language television. She was a well-known speaker and HIV educator with a large Florida county health department. She seemed to be doing all right health-wise after 17 years of living with HIV, and had never taken HIV meds -- opting instead for herbs, vitamin supplements and meditation in order to maintain her health. It was just a few months after the interview posted that Damaries' health began to decline. Thus began what was, for her, a grueling process to decide whether to start HIV meds, and which meds she would start with. "I felt as if [my T cells] were my kids, waiting there, like, 'What are you doing? What are you doing? Come on, help me,'" she remembers. "And I felt so guilty ... that I just had to say, 'You know what? Help is on the way.'" In this update interview, Damaries opens up about all of the aspects of her decision-making, and shares tips for HIVers who are thinking about starting treatment -- including why she recommends against following in her footsteps with respect to delaying treatment.
Damaries Cruz, welcome back to TheBody.com. It's good to have you back here.
Thank you. It's great to be back.
Let's start with where you're at right now. Are you still living in Florida? Are you still doing the same work you were doing the last time you were interviewed, in 2008?
I'm still in Florida. I haven't been working. I've been on disability for roughly a year. I've been sick for almost the past two years.
I was working for the Miami-Dade County Health Department. I lived about an hour and a half away. I would have to drive over there, work 10-hour days, and then come back home. That took a toll on my body. I started getting sick. Plus, I had a lot of other stress.
I always used to say to people, "Watch out for stress. Be very careful, because it will kill your T cells, and it will kill your immune system." But I just didn't think about that then. Stress took over, and my health started going down.
These economic times are really hard. I was trying to fight for my house, go to work and not get sick. It's been really difficult for me.
I worked until my health couldn't take it anymore. I don't recommend that to anyone, but that is what I did. When I applied for disability I was already sick. I went to the Social Security office in person. I was petrified, because I hadn't heard too many good things about the whole process; but you know, I met two angels. They were so friendly and nice with me; I was so nervous that I was even crying. I was very honest about everything.
They send a form to your doctor and after the doctor fills it out, they make their decision based on that information. I went there knowing that it was going to take me up to a year to start receiving the benefits and that I might be denied three times prior to start (this is what people told me). To my surprise, I was approved in about 30 days! And I didn't even need an attorney. I even went back to the Social Security office to make sure it was right!
I'm not planning to stay on disability forever. My plan is to go back to college and eventually, when I have my degree in clinical social work, go back to work.
You were diagnosed with HIV in 1991, but by 2008 you'd never taken any HIV meds, even though at one point in 2006 your CD4 count had dropped enough that you were given an AIDS diagnosis. You were instead taking holistic treatments and vitamins, and you seemed to be doing OK. Had you started taking HIV meds by the time you started to get sick, almost two years ago? What happened?
I'm a hardheaded person -- a very strong-minded person, I should say. When I got sick, I still didn't want to take meds.
Now, I know a lot of people are going to read this. I don't want people to follow in my steps, because this is my story and this is what I did. I don't recommend that anyone do what I did, or what I do. I'm just sharing my story with people.
So what happened is: I had pneumonia. My now ex-boyfriend -- we were dating at that time, I think it was the second date -- he was here, and we had to call 911, because I couldn't breathe. I had been given an antibiotic for the pneumonia and I had a reaction to it. So he had to bring me to the hospital.
But I didn't go to the hospital for the pneumonia; I went to my holistic person, to my Chinese herb person. They did some treatment with acupuncture, and they put some cups on my back so they could open up my lungs. I still didn't go to the hospital. I didn't even think about medication, then. I still was saying, "You know what? This is going to be OK. I'm going to kick stress to the side. I'm going to be fine. I'm just going to be happy, ha-ha." But "happy ha-ha" never came. And it got complicated. The pneumonia went away, but then there were other things. I think, in two years, I've been my best maybe a whole month. Every other day, I've been sick. In the past six months, I've had maybe two days of complete health and energy.
After the pneumonia, I came out with chronic anemia, which is something that HIV-positive people can get. That really kicked my butt, because I couldn't move. I was tired. I didn't want to cook. I didn't want to do anything. That's why I had to apply for disability. I couldn't do it anymore.
My T cells were 46. Right now, they're 55, but they had been 46 for a few years. They got stuck there. And my viral load was 233,000, which is not bad for being positive for almost 20 years without medication. But then I have other complications. I have genital warts; they are out of control. I have the anemia. I hardly have hair, because it's starting to fall out, because of the anemia. So I started to get nervous. And every other month I was sick.
So I decided to go and visit my mother, as I always do. I went to visit my mother this past year in Puerto Rico. I stayed there for a whole month, and I meditated and I prayed. Now, this might sound silly to a lot of people, but I'm a person that visualizes a lot and I had a conversation with my soul. I saw my T cells standing there like soldiers, waiting for help. I saw 46 T cells standing there.