On Talking to Your HIV Meds, and Listening to Your Body
Part of the Series Other Sides of HIV: People Taking HIV Meds Share Stories About Side Effects
I was diagnosed positive in 1994. I was infected in 1993. I resisted taking HIV meds, at first. It took a few years for me to want to take them. To give a little background on that: My dad was a pediatrician, a hematology oncologist. Growing up, I was like his tail. I followed him everywhere, and went with him every Sunday when he would make rounds at the children's hospital. I would see children sick, and children with leukemia and all different sorts of cancers.
In his private complaints on our drives there and back home, my father would sometimes talk about how medicine is just one huge experiment -- that the doctors and pharmaceutical companies wish that they had the right answer for every patient, every time, but they don't. He expressed a lot of frustration that sometimes what worked for one child would not work for another child, and seeing children die was very, very painful.
So, my first thought about having to take HIV meds was one of real resistance. I thought, this is a brand-new disease. They are giving us something that was formerly a cancer treatment. It was taken off the shelves, and then approved for HIV, and it didn't work well. This was AZT [Retrovir, zidovudine]. And to just give us what looked like random doses -- I just didn't like the idea of poisoning my body with something that would have a minimal chance of working. So, I resisted for as long as I could, until my T cells dropped to 11, in about mid-1995.
It didn't take very long for my immune system to just completely disappear. I was diagnosed with 189 T cells, and within a year and a half, I had 11. At that point, my doctor said, "Sorry. We have to try something."
I was put on the typical AZT, d4T [Zerit, stavudine], and 3TC [Epivir, lamivudine] regimen -- the "early stuff." I hated it! The side effects were excruciating. And with AZT, they don't go away. For some medications, the tummy side effects will eventually go away, but for some of that early stuff, they just didn't. It really does feel like your guts are falling out. Nothing works anymore.
For me, what was most alarming was the side effect of anemia. The anemia was excruciating. I kept adding iron. I was fully dedicated to eating organic, taking vitamins and supplements, and trying to do this alternative, natural approach. So, I was eating very excellently, but it didn't matter what I ate; everything went right through me. The nausea was most profound within the first couple of hours after taking the meds, but the diarrhea was pretty much constant -- and the gurgling and painful bloating, I also remember.
Then, when we came out with our new meds and our cocktails, and we were trying to figure out what would work, between 1996 and 1998, I went through five different combinations.
I remember the combination that was about my fourth, which contained Sustiva [efavirenz, Stocrin] and, I think, 3TC. That was the one that had the least side effects. Sustiva causes lots of really interesting, funky dreams at nighttime. You almost get this very mind-numbing sensation. But it had no effect on my virus at all. It was completely steady.
There's a special place in my heart for the diarrhea that's caused by Crixivan [indinavir]. My worst case of diarrhea happened while I was trying to adapt to Crixivan. Crixivan causes what I call the unknown, out-of-nowhere, completely out of the blue, no warning, explosive diarrhea. It's not like regular diarrhea. It's like your body is just trying to reject everything in a huge rush.
I got one of my best speeding tickets ever. I was pulled over on the highway, trying desperately to get home, because I thought that maybe something was going to happen. And then, something did. I was sitting there, crying -- and I still needed to get home. And I got pulled over.
I had to roll down my window for the cop. And I'm crying. And he's asking me why am I speeding. And I just blurted out: "Because I have AIDS and I crapped my pants, and my body's falling apart." He had no sympathy. He just gave me the ticket anyway.
I have to laugh at that these days. Because, at that time, I was just really, really hating my Crixivan. And that's something that is, I think, part of the process with dealing with meds. You go through these stages. It's like getting used to a new person: Do I like this? Can I live with this? Can I adjust to it? Can I accept this part? And this part is needed, but how do I honor what I don't like? And how do I express something in my relationship with these medications so that they are a part of my daily routine in a good way? So that medicine is not just the experimental mindset, but is really medicine? That it is, on a spiritual, physical, emotional, mental level, good for me, and helpful for where I need to go?
That takes being able to hold your medicine, look at it in your hand, and say: "You are coming into my space. You are coming into my body. You have a job and a task to accomplish while you're here. But this is what I also need you to understand: My kidneys are going to feel you; my liver is going to feel you; my intestinal tract is going to feel you. And, please, tread gently."
When you consciously have this approach with working with your medicines, it feels like you're working together as a team.
There are some different thoughts about diarrhea. My doctor was very open-minded to different approaches to deal with diarrhea. He said, "as long as you're hydrated and you're not moving too much water," I could try different approaches. But one thought is that antidiarrheal medicine is slowing down a natural process in which your body is trying to get rid of, and cleanse, and not absorb, certain things that would normally be absorbed. It's the body's way of saying, "This doesn't belong. I need to get rid of it now."
I did have the option to try to take things to help with nausea and diarrhea and stuff, but none of it really worked very well. And none of it seemed, spiritually, the best approach to deal with it. For me, the best approach was to understand that this was part of how my train works. It's the river of my body. There's going to be a lot coming in, and a lot going out.
Since I had children, I always had baby wipes with me. I was the kind of mom who always traveled with a clean pair of underwear and baby wipes. And if things got gross, I was trying to clean myself up, wherever. That felt better than trying to add more medicine, more chemicals, into a body that's already heavily taxed by trying to deal with the HIV meds.
The entire digestive system -- beginning from your mouth, down to your esophageal tract, your stomach, all the way through -- feels these medicines. Some of them do really taste like you're drinking toxic fluids made in some pharmaceutical factory somewhere. I think it was saquinavir [Invirase] that made everything taste really metallic. There was stuff that I just didn't want to eat anymore because everything just tasted metallic.
I can't compare this to what my body would be like if it were healthy, because I don't know. I have been living with an AIDS diagnosis almost as long as I've been alive as a healthy person. But most of my life then, I was a growing child. So, to remember what it felt like to have a normal digestive tract is really, really hard to recall.
I know that there are certain foods that I cannot eat. I cannot eat fast food. It goes right through me. I know that I have to be really careful what kind of water I drink. It has to be purified. I know that greasy foods, they seem to have a much harder time working through me. It's easy for me to get very clogged up, and for things to slow down.
I have to really watch and make sure that my fiber intake is good. There's definitely a fuzziness if you don't eat really, really well when you're taking these meds. If you don't eat enough fruits and vegetables and get enough good fiber and that kind of stuff, you have that "I'm medicated" feeling. You can instantly feel much more tired, and much more run down. I know that when I don't eat really well, I'm going to immediately feel very dull.
I'm probably younger than the normal time in life of having to look at issues like diabetes. I think that my pancreas is expressing its fatigue. I feel conscious that all of my organs are taxed really, really heavily and, therefore, that's why so much more water is important -- to keep things moving, and keep things going.
When I first saw my viral load become undetectable -- I want to say it was in 1999 -- I was absolutely thrilled. At that time, I was on the liquid form of Kaletra [lopinavir/ritonavir], Viread [tenofovir] and, I believe, Videx [didanosine, ddI]. It was like there was a thousand-pound ... I don't want to use the word burden, but there was something that I was carrying, and I didn't need to carry it anymore -- like I could finally stand up straight.
I felt lighter. I felt healthier. I felt like there were multiple levels and types of medicine ways that were working for me. It wasn't just Western medicine. It was Native medicine and good health, and having my mind in a good place so that I could deal with this. And that's what I wanted. I wanted to have this virus go to sleep.
I realized it wasn't gone. I realized I wasn't cured. But I knew that it lay there sleeping. It was dormant. Every mom can agree that taking care of a sleeping child is the easiest.
In my earliest of days, I had viewed having HIV as being like having a child. It was like having this life inside you, but it's a life you can't give birth to. It's the life that lives inside you. And I wanted to be very careful about not treading into the area of "kill." I didn't want to have it killed. I want it out of my body, but that's different from having something killed. Because I don't want death happening inside of me.
It's a complicated, very delicate approach you have to take. And it takes everything that you've got. You have to think wellness. You have to eat wellness. You have to surround yourself with people who are willing to be well, and that's hard to find.
And you have to commit to these meds. Learning to be adherent and taking meds every day, that was challenging. I'm not a morning person, and some of these meds were every four hours, every six hours, every 12 hours. Some stuff had to be refrigerated. Some stuff was liquid. It was a mess. And I am not the type of person who can follow a schedule very easily. So I had to have a series of alarm clocks to remind myself to take stuff. I had to be dedicated to it.
This article is part of a transcribed conversation between Shana Cozad and Olivia Ford, executive editor of TheBody.com and TheBodyPRO.com. It has been edited for clarity.
Want to share your "Other Sides of HIV" story about dealing with side effects, good or bad? Write out your story (1,000 words or fewer, please!), or film a YouTube video, and email it to email@example.com. In the coming months, we'll be posting readers' "Other Sides" stories here in our Resource Center on Keeping Up With Your HIV Meds.