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The Golden Girls (and Boys): What It's Really Like to Grow Older With HIV/AIDS, Part 1

September 19, 2012

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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.

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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.

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