September 19, 2012
Since the invention of protease inhibitors in the late '90s, HIV has morphed from a death sentence into a chronic manageable disease. That shift means that more and more people living with HIV are going to see their golden years. That's an amazing development, yet aging in the HIV-positive population is a very complicated topic. It presents a plethora of issues and challenges that include stigma and isolation; the physical aging that comes with age and HIV; the responsibility among doctors to improve the quality of life of their patients; and the importance of seniors being empowered.
While we currently have up a roundtable conversation with experts in HIV and aging discussing these issues, we at TheBody.com firmly believe that it's just as important to include the voices of those who actually are aging and living with HIV.
So, with that being said, we invited four people over 50 who are living with HIV to sit down and talk to each other about their lives, the challenges they face and the successes they have achieved over the years. Rusti Miller-Hill, one of TheBody.com's bloggers and co-chair of the Positive Women's Network, New York City Chapter, moderates this conversation with: Tommy Chesbro, 51; Sherri Lewis, 58; and Robert Vazquez-Pacheco, 56.
Rusti Miller-Hill: I want to start off by asking you to introduce yourselves, and to say when you were diagnosed and did you think you were at risk at the time?
Tommy Chesbro: I was diagnosed in June of 1986, but looking back and knowing that I had [acute] retroviral syndrome, I know that me and my partner were infected in the fall of 1985. I really did not think that I was at-risk. I had just started hearing about AIDS maybe a few years before, but we only heard about it being in large coastal cities.
At the time, I was living in Oklahoma City and didn't know of anybody who was infected, and just simply thought it wasn't something that I needed to be worried about.
Rusti Miller-Hill: Sherri, can you share your experience?
Sherri Lewis: I was diagnosed on May 15, 1987. I was probably last at risk in 1985. So I was probably infected then. I was perfectly healthy. I went for a test because I was getting married, and I thought I should just get a clean bill of health. I was shocked because I was healthy and in those years, as my fellow panelists know, if you weren't sick, you were healthy. The people that I knew at that point that had AIDS obviously were dying. And so it totally surprised me, although I knew I had a history that could have been risky.
Rusti Miller-Hill: So you didn't think you were at risk at all?
Sherri Lewis: I thought there was a possibility. I wouldn't have gotten tested if there weren't. I was a recovering addict. I had a bisexual boyfriend in the '80s. But it was a few years: '85. By '87, I was tested. So I thought, maybe I lucked out because I was healthy. But I wasn't.
Rusti Miller-Hill: Robert?
Robert Vazquez-Pacheco: My partner was diagnosed with KS [Kaposi's sarcoma] in September of 1981. When we went to the doctor, obviously, they had no tests. So I didn't know whether I was infected or not, actually. And at that point in time I didn't care, because the priority was taking care of my partner -- he was very sick.
He died in '86. Then in '87, finally, I thought, "All right. Well, now it's probably time for me to get tested to see whether or not I was positive." But I had already done the math and had realized that I had probably been infected, not possibly through Jeff, but somewhere in around February of 1981.
I had the classic flu that people had that wasn't the flu. So I could have been infected then. So, strangely enough, I can say now that I've been positive for the majority of my life.
Rusti Miller-Hill: For myself, I was diagnosed in 1991. At the time, I was trying to seek entrance into a treatment facility -- I had an addiction to crack cocaine -- and part of their eligibility criteria was to go and be tested with the Department of Health. I didn't think that I was at risk at all, although I was engaging in high-risk behaviors: unprotected sex. For some reason, I just didn't think I was at risk. I wasn't an IV drug user; so I really didn't think that they were talking about me. They were talking about other people, but not specifically addressing me as that person. So I guess I never thought that I could be at risk.
So you take that information and then you try to empower yourself and educate yourself. But for those of us who were diagnosed before the HAART [highly active antiretroviral therapy] era ...
Robert Vazquez-Pacheco: In the dinosaur age.
Rusti Miller-Hill: Yeah, I think we all lived in that era.
Robert Vazquez-Pacheco: I was infected by Tyrannosaurus Rex.
Rusti Miller-Hill: Yeah, right? Did you ever think that you would live this long to see the coming of drugs that would really sustain and provide increased quality of living, to the point where HIV has now become a chronic, manageable disease?
Sherri Lewis: I was terrified. I wasn't sure I was going to be here long enough to see medication, no. But I had hope and I really lived in that 24-hour period; I had a program of recovery from alcohol and drugs, which helped me to cope with the 24-hour period -- and not look into the future. Because whenever I looked into the future, there was none. All I saw was wasting and death and a short life.
We all knew what the facts were, but I fought them. And I just lived, in that 24-hour period, to witness the miracles that we've all witnessed at this stage. We're just getting older and living with HIV. And, for myself, I'm healthier than I was back in 1987. I never have been ill. So, the hope worked. It was a good treatment plan.
Robert Vazquez-Pacheco: I never thought that I would reach 40, but I never thought I would reach 40 for other reasons -- not for HIV. I thought that just for the way I was living and the amount of drugs that I was doing, and just sort of the crazy lifestyle that I was leading in my late 20s and early 30s. I was surprised that I would make it to 40.
And HIV was never a big worry for me. I've never been a person that has worried about mortality at all, so I just didn't worry about it. I thought there were too many other things to do. Once Jeff died, I joined up with ACT UP and Gran Fury. I started doing all this AIDS activism stuff. And I really didn't give thought to that fact; as long as I was healthy enough to keep doing something, then I thought I was fine.
I actually didn't start medication until the mid-'90s, anyway. But, no, it didn't occur to me.
Sherri Lewis: That's also a key to survival: You didn't take medication until the '90s.
Robert Vazquez-Pacheco: Oh, yeah. I was not going to take AZT [Retrovir, zidovudine].
Sherri Lewis: No. See? That's a key factor.
Rusti Miller-Hill: Yeah.
Sherri Lewis: Yeah, it is.
Rusti Miller-Hill: Well, mortality was always an issue for me. I became a mom at 15 and was diagnosed when my daughter was 16 years old. And so it was a real issue, because in the early '90s, everyone was dying. There was no reprieve. There was no tomorrow, for lack of a better word.
And so the fear was that mortality was always an issue. I remember my daughter asking my health care provider at the time, "Can I make plans with my mom?" And I remember her saying to her, "No. I advise you to enjoy each day as much as you can."
So I took AZT. That was the first medication available, and I was a part of that toxic scene, holding onto whatever hope there was.
So, in the beginning, no, I didn't. But as time went on, like you, Sherri, I got a program in my life that allowed me to have hope and understand that there was more to this journey we call life, and that there was something greater than myself. I understood that, as long as I surrendered, there would be an opportunity to live, and to live differently. I think that helped a whole lot.
But I guess we all shared the idea, at some point, of what mortality meant -- means -- to us individually, and then collectively as a community.
Tommy Chesbro: I was diagnosed, obviously, before HAART -- actually, before even AZT was available. And after I found out, I didn't think that I would live to this age, for sure. I didn't know how long I would live. I felt like my life would be cut short.
One of the reasons was, what even spurred me to get tested was, a coworker of mine was diagnosed on a Wednesday, and died on Friday. It happened so fast. And then once I found out about myself and started meeting other people with the disease and got into a support group, people just kept dying. I was seeing it all around. I was just sort of waiting for the other shoe to fall. Fortunately, I was staying healthy.
At some point, I sort of made peace with the fact that my life was going to be cut short. And what became really important to me was that I wanted my life to mean something. So I started really working on HIV activism, and started getting really involved in the community, in prevention and care; and started speaking publicly about the disease, about living with the disease.
I did start taking AZT in December of '92 and, of course, I became resistant to that. I took ddI [Videx, didanosine], and became resistant to that. I took d4T [Zerit, stavudine], and became resistant to that. I took Sustiva [efavirenz, Stocrin], and was resistant to that before I ever even started any combination therapy.
I didn't start a protease inhibitor until '99 when I did actually start to have a decline in my CD4 cells, and had a year of being pretty sick. Although I didn't get an AIDS diagnosis, I was pretty ill for about a year. So, like many of us, I thought that my life was going to be cut short.
Rusti Miller-Hill: What you said was poignant, when you talked about the idea of not knowing when, but creating a life that became meaningful to you. I think all of us, at some point, reached that pinnacle point in our lives, where we thought, "OK, there's got to be something more to this. And I've got to be able to respond differently." It moved from me to community, and shifting the focus there. Am I correct in thinking that?
Sherri Lewis: Mm-hmm.
Tommy Chesbro: I would agree with that.
Robert Vazquez-Pacheco: I'd say, partially. What I was driven by in the beginning was rage. Not for myself, but for my lover, who would be in the hospital room and the nurses would come suited up and leave his tray outside the door.
Sherri Lewis: Oh, yeah. Exactly.
Rusti Miller-Hill: I remember those days, too.
Robert Vazquez-Pacheco: It was the sheer injustice of it that drove me, that made me angry. In some ways, I was too pissed off to worry about whether or not I was going to die -- because I was so angry at seeing people being mistreated that way.
Rusti Miller-Hill: I hear that. You guys and I remember ACT UP in the beginning, in the early 90s. I was incarcerated at the time; I was in a women's correctional facility. And I remember those [people who were] wheeling women to the medical facility. It wasn't even a hospital. It was just like a makeshift clinic. The COs didn't want to touch the women. So they would put them in a wheelbarrow, wheel them to the medical facility and leave them there. To me, that was the rage, the anger.
How could you treat people in such a manner? So, I think we all have our starting points of where activism begins, and the focus has shifted to a bigger picture and how we think society should respond, and what the community can do when we come together.
But just thinking back, as our topic is "Aging and Living With HIV," I know part of this is about, so now we're living longer. We've learned so much from the past, our fallen comrades, our heroes and each other, and we are trying to manage our lives today. What are some of the other health issues that you think about when you're dealing with now, as you're getting older, in addition to HIV?
Sherri Lewis: I can't say I really have any standout health issues, other than the constant mental health issues that come from being a survivor, and trying to embrace it. These last couple of years of my life, I shunned the word "survivor." See, that was the goal for so long -- so then I became a successful survivor. But I thought, surviving is like holding on to the side of the Titanic. It wasn't enough. My life was still very half measured.
I didn't get to have children, because I was diagnosed at a time where I couldn't have children. I felt the loss of my marriage; I felt nothing but loss. Survival was like a good thing, but then it became, OK, now, because of medication, because of all of the things that have happened in our world that've made it possible to live a long, healthy and productive life, I wanted to embrace living, without that survival code.
That has actually changed my life a lot, in terms of the men in my life, not having to be only in a positive circle, not only doing HIV work. Because my whole life was activism for the 25 years. And the last two, I've been more integrated into the mainstream. That has helped me mentally and emotionally, so I don't always feel like that's my only life.
You can still be an activist, simply because you carry the history, and you do what you can when you're there. But it was my only life. So I think mentally, just being like a Holocaust survivor -- and being Jewish, I refer to that -- you remember, but you don't have to live in the depression and the sorrow.
Rusti Miller-Hill: Sherri, in terms of other health issues, what was menopause like for you? I know I've been struggling with that.
Sherri Lewis: Well, it was very hard. And I assumed that it wasn't going to be hard -- probably just because I live in a state of denial most times. But honestly, because, all kidding aside, I'm macrobiotic, I drink carrot juice and am very healthy, and I dance every day. So I thought my good health would not be an issue for menopause. But I had the worst menopause. My mother didn't have it like that.
I couldn't sleep for a year. I had erratic sleeping, getting a couple of hours here and there. I sweat like crazy. It's a good thing I knew my HIV health, because I would have thought I was deathly ill. I was irritable and unhappy. I'm not given to depression, but I was severely depressed.
When I went to the doctor, she said, "Well, you have no hormones, young lady. Are you ready to take hormone replacement?" I was afraid of more chemicals and she said, "Now we have bioidentical." She explained the low risk, and how it's preventative for women's bone density loss and cancer. And I thought, OK.
Since I was on that, which has been over two years (part of that letting go of survival code), I've embraced life. I feel like my old self. I'm not depressed, and I'm healthy. So now the menopause isn't an issue. Now we're back on track.
Rusti Miller-Hill: Robert and Tommy, are there any medical issues that you guys are dealing with outside of HIV that have impacted your daily living?
Robert Vazquez-Pacheco: Actually, I've been in the hospital about six or seven times in the past 15 years. None of them are HIV related. I end up getting very bizarre things. I had two strokes, and the doctors couldn't figure out why. So I've had a lot of health stuff, but I don't think it's necessarily related to HIV.
I have the typical ... I was going to use a word in Spanish, achaques, which is sort of like the typical pains that you get as you get older. Now the joints aren't as good anymore. You know what I mean? And as they say, you know you're getting older when you're given the choice of two evils and you choose the evil that gets you home earlier.
Rusti Miller-Hill: Yes.
Robert Vazquez-Pacheco: So, I haven't been suffering with that. What concerns me is the long-term effects of HIV medication, because no one is looking at that. Everyone is prescribing all of these meds, and saying, "Well, you're going to be on these meds for the rest of your life."
Tommy Chesbro: That's one of the issues that I'm dealing with myself, is the long-term effects of the medication. Because I'm dealing with cardiovascular disease. I'm also pre-diabetic and insulin-resistant. I haven't had to have a stent at this point, but I do have buildup. I'm on medication for cholesterol, my triglycerides and for blood pressure. All of that is most probably related, or has a lot to do with either my medications, or the HIV, or the combination of both, according to the research that's out there.
And then, of course, just the other things of aging I'm dealing with, too. I've got pretty severe arthritis in my knees. I'm probably going to have to have one of my knees replaced.
On the mental health side, early on I really struggled with depression -- not so much now. But I still take medication. One of the things that I had to do for myself, which I think was sort of alluded to earlier, was I had to make sure that part of my life had nothing to do with HIV. I had to find a balance, where I could focus on other things that I liked to do and that were important to me, like family and so on, that did not have an HIV focus. I think that was one of the things that I had to do to stay mentally healthy.
Rusti Miller-Hill: That's interesting that you brought that point up of finding a balance and identifying things that weren't HIV related to fit into your life to refocus, reenergize and revitalize yourself through. I think that's really powerful.
I don't even know if that exists in my life. I don't know if I have that place. I think I find that place through books. I'm an avid reader, so I often take a journey through a book to relax myself. I've been a mom for so long that I have so many other roles as a woman; sometimes I don't think we get that luxury to focus on other things.
Sherri Lewis: Yeah.
Rusti Miller-Hill: I have kids and I have grandkids -- so my attention is diverted. But my work leads me back to HIV. And my passion leads me to the formerly incarcerated. So I'm sort of in flux at all times.
But thank you for that. That's food for thought.
Anybody else want to comment about other medical issues that they deal with outside of HIV? Tommy, how do you juggle all of that, making sure that you take the right meds at the right time? Is it similar to the way you manage your HIV medications? Or are there different styles that you use, or a routine? For me, I've got this big pill box that I fill every week on Sunday night. I'm just making sure that I've gotten my dosing correct, and my medications for the upcoming week. Do you do something similar, or something different?
Tommy Chesbro: Well, probably similar. I don't have diabetes, but I have pre-diabetes. I take lots of different medications related to that and the heart disease issues, and so on and so forth. I have this big Rubbermaid plastic container that is full of pill bottles. I pull it out of the cabinet every morning, and pull out my morning medications; then I pull it out of the cabinet in the evening and take my evening medications.
I've been very adherent in my medications from the very beginning. That's one of the things that I have not had to struggle with, and that I know has been difficult for many people. For some reason, fortunately, I've just been able to really stay adherent and take those medications.
And it wasn't until recently that I started using a little box that you can put your medications in for each day, morning and evening. I don't know why I didn't start using that earlier, because I was taking my big plastic thing with all my bottles every time I traveled.
Robert Vazquez-Pacheco: Actually, being adherent to the medications has never been a problem for me. But one of the things that happens is that I can be forgetful some of the time. That's why I like setting up the medications for the week. Because if I see that, for example, on Tuesday evening the Tuesday slot in the medication container still has pills, then I know I've forgotten. So that helps me.
Mostly what I take, aside from the HIV meds, is medication for depression. Depression runs in my family. I've had several close relatives commit suicide. And I have folks that self-medicate through either drugs or alcohol, still. So depression is certainly something that is very prevalent in our family.
Rusti Miller-Hill: I had a physician tell me, "Mental health is something and medication is something that every person living with HIV should have, because at some point there is an opportunity to take care of yourself."
I was like, "Oh, OK. I don't know." But I was going to ask and find out. But, you're right. We oftentimes are so busy looking at our physical health, we forget about the mental piece. And taking care of that is important.
Sherri Lewis: Yeah, because it's connected to our bodies.
Rusti Miller-Hill: Yes. But there's also a lot of taboo around mental health and taking care of it, and seeing a therapist or really just talking about what you're feeling. I know that oftentimes in the African-American community it's taboo.
You don't mention mental health. You don't go to a therapist. You don't want to be labeled as "crazy." So a lot of the times depression signs and symptoms go undiagnosed. You know? So I think that mentioning that is really important.
Robert Vazquez-Pacheco: I would expand it to say in communities of color, in general. Going to a shrink is just sort of ... you know? It's one of my constant things with my family. I come from a very traditional Puerto Rican family and one of my constant things is telling people, "You need to go see a shrink, and you need meds, OK? Because you're goddamn crazy, right? And there is help for you. You don't have to go through that."
And my point is that you don't have to torture us with it.
Rusti Miller-Hill: Exactly. And, sometimes, folks need permission. Because they've been taught that that's something that we don't do. So it gives them permission to just acknowledge the fact that they might need help. Because you can explain away a symptom in a minute, as opposed to acknowledging and then really owning it and accepting it for what it is, and then doing what's necessary to take care of it.
Tommy Chesbro: I just wanted to add to something that Sherri said earlier about hormones and women -- that is something that is an issue for men, as well, and especially as it relates both to physical and mental health. In '99, right after I started protease inhibitors -- which now I don't take; I take an integrase inhibitor -- but back in '99, I was also diagnosed as being hypogonadal. I had almost zero free testosterone. I was also extremely depressed at the time, and I had lost 30 pounds.
Since then I've been on testosterone replacement. I was on injections for years, and then I was on a gel. Getting those hormones in balance made a huge difference in my mental health and my depression. And then even going to the gym helped me mentally.
Sherri Lewis: Do you take the injection and the cream, or one or the other?
Tommy Chesbro: No, no, no. I no longer do the injections. I just do the gel.
Sherri Lewis: Is that also a bioidentical kind of thing?
Tommy Chesbro: Yes.
Sherri Lewis: That's great, because people don't realize men have menopause. Really. Because women can spend hours on it.
Robert Vazquez-Pacheco: I think the problem is that, people refer to men's menopause as stuff like buying a sports car and getting a trophy wife.
Sherri Lewis: Right. It's silly and such a macho life view.
Robert Vazquez-Pacheco: Seriously. So it's not something that's discussed and I was going to relate this to what we were talking about before: There are all these sort of societal or cultural taboos that are not discussed. Anything that makes a man weak is not discussed.
Tommy Chesbro: Mm-hmm.
Robert Vazquez-Pacheco: For example, the fact that a woman can take care of herself, and not give her life for her family is not discussed. It's like, "No, you have to suffer for your children and your husband, and everyone else. And maybe God will repay you or something. Who knows?"
Rusti Miller-Hill: That is so true.
Robert Vazquez-Pacheco: So those are the types of stereotypes that we always have to deal with when taking care of ourselves.
Sherri Lewis: Right.
This transcript has been lightly edited for clarity.
Coming Soon: Part 2!
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