Damaries Cruz: Deciding to Start Treatment After Nearly 20 Years of Living With HIV
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.
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.
So this is a doctor that you've been seeing for a relatively short time.
She's a pretty new doctor, yeah. I've only seen her once or twice. But it's a good match. She's great. If anything bothers me, I can just call, and she calls me back right away. Initially, she wanted to start me on a different regimen, but I said no. I said, "This is what I want." She asked me why, and I told her why. I told her, "I want this, because it's less toxic," and I gave her all my other reasons. She said, "Fine. I can agree with that. I can work with that." She even gave me a hug; I was so happy.
Though, when we met for the very first time, she didn't make a great impression on me. She was going to a meeting and I was there to ask something else. She overheard what I was saying, and she said, "I cannot see you now. I cannot see you now." I'm like, "OK." Then she said, "Well, no. I'm going to put you on meds right away," and then she walked away. But I hadn't yet taken any meds! I said, "Oh, I'm not coming back!" to a friend of mine who goes to her, too. He said, "No. Give her a try again." Thank God I did, because she's great. I always give the benefit of the doubt. It's like the first date, you know?
You've talked a lot about how important it is to do research. Where do you find treatment information?
I'm a very visual person. I don't want to say that I don't like to read, because then they're going to say ignorance is bliss. Because there are some forums out there where people hate me. And I've read this hate mail before. But I really don't care what they think. So, put that on the record, please. I can't give a crap. I am more of a visual person, and prefer person-to-person interactions. If I go online -- this is me, not necessarily the person that's reading this, right? -- if I go online and I search for "Viramune," or whatever, and I start reading all those side effects, I will not take the medication. So I prefer to call people.
I called people I knew. Some people were brought to me without my even asking. My highest power -- God, or the universe -- works in mysterious ways. A few days before I had my appointment with the doctor, I was contacted by this professor from FIU [Florida International University] -- I had done a Webisode series for them, like a mini reality show online [called "The Stigma Stops With Me"]. We did it with a local paper and a TV channel. The professor had read my story and wanted to talk to me.
He's been positive since 1988. He didn't take medications for a long time, but now he takes medications, plus supplements. He just felt in his heart that he needed to talk to me. When I heard that he wanted to talk to me, I said, "This is great. I can ask him questions!" And we started e-mailing.
I haven't met him in person, never. We talk on the phone. We talk over e-mail. He checks on me. I've been so supported by other people; it's been amazing to me.
The week before I decided to finally go on meds, I was overwhelmed already. Because I had so many questions. Even in my sleep I was still asking questions after a whole day of asking people: "So how do you feel?" "What should I ask?" "What do I do?" "Do you have any body shape changes?" "Do you have a hump?" "Are you getting fat?" Because let me tell you something -- and I'm going to sound vain -- but I don't want to get fat. I already have a belly. And if the food is not doing it, I don't want to add to it! I didn't want to get a "lemonhead," or whatever they used to call it back in the days.
I asked questions. I looked at some things. My ex-boyfriend is on medication and he's doing great. But I do understand, too, that people can only tell me, "It works differently in everybody." Because bodies are not the same -- just like the virus works differently in everybody.
I just went with the less toxic regimen, and listened to a lot of people. When I started the medication, my ex-boyfriend was here. I had asked him, "Can you please stay?" I wanted to start it over the weekend, so he could be there, because I thought I was going to be so sick from it that I was going to need someone.
Let me tell you something: Nothing happened. But he was here. The medications come with this long sheet about the side effects. I said to him, "Here. You read them, because if I read them, I'm going to feel them." Because, you know, human beings, that's what we do.
Was it important for you to have someone there for those first couple of days on treatment?
I think it's the most important thing to have someone there, especially when you don't have family. I don't have any family here. And this is my ex-boyfriend, and he might end up being my boyfriend again. He's so great. He's always taking care of me. He's working on his stuff, so he's been there. I call him my personal private nurse. He's here all the time. And I can cry. I can scream. I can be a witch. And he's still there. He's just helping. He's like, "OK, it's going to pass. I know it's not you."
But it is important. I had people calling me, or texting me, because I didn't want to talk. "Are you OK? We're here for you. We're sending you love." That is so important. That's what got me through tough patches when he wasn't there.
Because what happened is, I started on a Friday. Monday morning, he left to work, and then he was in school until nighttime. He didn't come back here until Thursday. So I was alone Monday. Monday, I felt sick. Monday, I couldn't move. I got scared, because I was now alone. But thank God, I have such a great support system here. I mean, I have angels everywhere. And I'm so thankful.
I called one person and she was in a meeting. She got out of the meeting to bring me food. And the next day, someone else from the food bank that I used to belong to sent me cooked food. So I didn't have to get up and cook. It was emotional for me. I think it's so important -- at least, I would say, the first three to seven days -- if someone is there with you, on and off. Not even to say, "I understand," or whatever. Just, "I'm here. You want me to make you a sandwich? Let's go and play a board game. Let's go and watch TV." That way you're not thinking too much, either, about taking this medication.
For holistic people like me, I'm not going to lie: It's a rough process. I'm very happy to take meds. And you know what I did two weeks prior to taking them? I started talking to my body and saying, "I know this medication is going to go straight to the virus, destroying the virus, and it's not going to touch anything else in my body. Nothing else." I did that two weeks prior. And every night, when I go to sleep, I say, "Thank you for just destroying the virus and not touching my body." I think that's really important.
Do you have any special little tips or tricks for remembering to take your medications, vitamins and supplements?
I put my meds together in the same place that I put all my supplements in the morning. I put them there so I can do the easy transition thing.
I got used to taking them all together. I take them at 10 o'clock in the morning. Then I've got to take them again at 10 o'clock at night. Every 12 hours, that's how you do it. For me, that's the easiest way. I put on an alarm. My phone starts going off at 8:30 in the morning and I wake up. At nighttime, I have another alarm: At a quarter to 10, my phone starts ringing or vibrating.
I used to think, "Oh, my God. It's going to be so hard for me to get up and make breakfast in the morning." Because I'm not a person that does that; I'm not a morning person. But after three, four days, I got used to it. Whatever it is that you need to do, you can do it; you'll get in the swing of things.
Do you have to take the meds that you're taking with food? Is that why you make breakfast in the morning?
You can take them with food or without food, but the first time I took them without food ... not good. I'm very sensitive. So I had to call my nurse. She said, "Take them with food. You want to make sure you have something in your system."
There are some meds that you've got to have an empty stomach to take. You have got to read the instructions for it.
It's really a process. The first week, after my ex-boyfriend had gone and I was here alone, I cried. I cried almost every day. It was just hard. So I called people. That's me. I call people and I just start talking and venting, and then I'm fine. Or I punched the walls -- that is until my ex-boyfriend got me the punching bag.
It sounds as if you've found the things that really help you get through the challenging times.
When you're alone, you have to find a way. There's no other way. I'm not going to call my 80-year-old mother in Puerto Rico, crying, "Oh, Mom!" I don't want to do that to her. So, yeah. I have great people here that I can talk to. And I cry a lot, as usual. I let it out, and then I can think clearer. I wanted to hide under the sheets the first week, because I was so nervous. But then I was fine.
Now, this year, I'm celebrating 20 years since I was diagnosed with HIV. Like I said, in my earlier interview, I cut a cake every year on Nov. 23. And this year's going to be big. I'm doing a party-type thing. Last year, I made dinner and friends came over, and we had cupcakes.
Every year, I make sure I do something. Because every year is a blessing. I didn't know I was going to be here.
It's a new life for me. It's different. I'm waiting to start to feel better, because I still have my plans. I'm going to go to school. I'm working on new projects with local channels from here, and other things. Great things are coming. I'm very excited.
You spoke earlier in the interview about the financial times being really challenging. How do you access your HIV meds? Do you get them through ADAP [AIDS Drug Assistance Program], which has had a lot of funding problems recently, especially in Florida? Or do you have Medicaid? How do you access your care?
ADAP here: It's horrible. They've already started closing offices, and there are waiting lists. I've been thinking about and talking to people about how to raise money to help people that don't have medication. So I'm working on that.
I had Medicaid, just for a few months. I don't understand it very well. I had private insurance for many, many years. I used to work in corporate America. When I stopped working there, they gave me an individual plan. An organization from the community pays, thank God. Because when I was working in the health department, I didn't have any benefits. I had insurance all this time because of this great organization -- I'm going to give it a plug right now -- the name is Broward House. They are awesome. Broward House has so many great services. I love this organization, honestly. They help the client a lot. They have something called AICP, which is AIDS Insurance Continuation Program. I had it when Center One used to be running. Then Center One closed, and Broward House got my case. So they pay for it. And it's been great.
Medicaid was only for a few months. I didn't even know I had it. It finished this past January. And when I called the Medicaid office, they said, "Well, you're going to have to call private insurance to see if you can get insurance. We cannot help you." I said, "Excuse me?" And they said, "Well, you make too much money." I started laughing. I'm like, "Are you kidding me? I'm on disability. Are you serious? How much money do you make?" Then she said, "Well, you can receive Medicare in March 2012." I said to her, "Lady, I can be dead by then." And she said, "I'm sorry, I can't help you." Click.
The private insurance: I still have it, but I just found out a few weeks ago that it's going to finish in a few weeks! Because they sold the company to a private I-don't-know-what. And now I'm trying to get insurance. I just started doing that, because I haven't been feeling good. I don't have the energy to talk to people on the phone. And do you know how many denies I get on the phone? Or, "Oh, no. We don't have anything to cover you." Then I have to go into, "I'm protected by the Florida statute so-and-so-and-so." Because what happens is you are protected by HIPAA. HIPAA guarantees you certain policies for all the insurance. A lot of clients don't know this.
You cannot give up. And even though, let me tell you, I feel like crap, I'm going to fight these people. Because they have to give me insurance. In 2006, I had to sign for AICP, and I had to find an insurance company. I was at Center One with my case manager, who was on speaker phone with the insurance companies. They didn't know I was there. One of the insurance companies told my case manager, "Don't you know? We don't insure this type of people. These are the walking wounded." I just smiled. I said, "Don't you know that I'm going to call the insurance commissioner's office right now?" And they hung up the phone.
I could have gone on. But I didn't want to waste my T cells back then. But right now, I'm taking the medication, so I can. You can't be quiet. You need to open your mouth and just have the courage to fight these people.
Do you have support from the folks at Broward House to find new insurance? Do you have a case manager or someone who's helping you in the process, and knows all the different avenues?
I have the coordinator of the program helping me. He's been great with me and has told me what to do. He even printed a list of the insurance companies that I can call. Broward House will write me the check for the insurance, but the first step is me calling the insurance companies and finding out how much are the copays and everything, and if I can afford it; because with the private insurance, I have to pay the copay for the medication.
If you hear something about a crazy, HIV-positive woman, who cursed out someone on the phone for insurance, or did a rally in front of the insurance company ... it's me. [Laughs.]
It'd probably be you along with a hundred other people who are in similar positions. You are certainly not alone! And you're opening your mouth and doing what you need to do, which is amazing. I wish you the best of luck in that challenging process.
Thank you. [Editor's note: In the weeks following this interview, Damaries was able to secure coverage through Florida's Medicaid "Share of Cost" program until she's able to receive Medicare in 2012.]
What advice would you give to someone who's thinking about starting HIV meds now?
Don't listen to anyone but your health. You gotta listen to your gut and be honest with yourself and your body. Your body, I swear, is going to tell you, "I need help." And you're going to feel it.
You don't need to follow my example. I get people that write to me because of the other interview we did a few years ago. They ask me, "Do you recommend that someone that just turned positive do what you've done?" I always say no. This is what I decided to do. It's my body, right? My temple. So I manage my temple the way I want to. Now, I manage my temple the way I'm guided to -- because I learned to listen to it. I'm here telling people, "I listen to my temple. This is my temple." But I didn't take the time to really listen, and my body needed help. I beat it up, and beat it up, and beat it up, until I couldn't beat it up anymore. But I don't recommend that to anyone.
You have to listen to your body; do your research; and have a great relationship with your doctor. If you don't like your doctor, move on. Look for someone else. Because you need to feel comfortable with your doctor. That's so important: to feel comfortable with your doctor, to be able to say, "No, I don't think I want that." Or, "What do you think I should use?" Or, "What do you think is better for me? Because my T cells are so low, or whatever." Or, "Because my T cells are here, is this going to really help me?" Those are the types of questions and conversations you should be having.
And have a great support system -- at least one person that you know you can count on, that will be there for you if you need someone to cook something for you, if you need someone to come and even give you a bath. Have that person that you trust.
Don't be scared to take the step. Don't be scared. If holistic stuff and other things are not working, you need to help your body some other way. Just look at it this way: Medications, even though they have a lot of chemicals in them, some of them do come from plants. They do have some herbal things in them -- it may be tiny, tiny milligrams, but they're there. And you can research that.
Just don't be scared to do it, and help your body.
You've mentioned a few times during this interview that you've received some negative responses to some of your online interviews from people disagreeing with your choices about taking meds. Can you talk a little bit about the responses in general? Is there anything you want to say in particular to those who may disagree with your views?
I've been humbled and honored by so many people that posted something on my prior interview and by the ones that send me e-mails directly. I've been able to make friends all over the world; I've been able to give hope, options and courage to others. These e-mails and comments helped me during so many moments when I felt my world was crumbling. Knowing I might be able to give hope to one person or keep one person from getting infected gives me healing -- it closes the circle, so to speak.
There are people that might like conflict; or maybe they are so scared that they feel the need to criticize what I say or do. All I have to say about that is: I'm sharing my story and the way I feel it and go through it. Why are you projecting yourselves on me? At the end, we are all mirrors of one another. It doesn't matter to me; what others have to say about me is not going to stop my healing.
Thank you so much, Damaries! It was wonderful talking to you. I'm so glad we got to do this update.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.