Damaries Cruz: Deciding to Start Treatment After Nearly 20 Years of Living With HIV
March 30, 2011
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.
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