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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: 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!

Follow Rusti Miller-Hill's blog, Advocacy Outside the Walls.

Copyright © 2012 Remedy Health Media, LLC. All rights reserved.

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This article was provided by TheBody.
See Also
More Personal Accounts of Older People With HIV/AIDS

Reader Comments:

Comment by: Glenn D. (Dallas, Texas) Thu., Nov. 22, 2012 at 1:04 pm UTC
Well I contracted the virus in 1980 and didn't take meds or even see a doctor about it cause I was afraid of the meds they were giving people like AZT that was killing people more than the virus. I just turned off to life and waited for death. I had lost most my friends by 1987 and I kept waiting. Wouldn't buy any new clothes or did any entertainment. Fortunately I never got sick with anything. So finally in 1996 I came down with TB, not sure how, but i did. I was hospitalized for 4 months and took meds for the TB for 18 months to make sure the TB was gone. At the sametime I started taking my hiv meds and had more of a problem with the side effects that the disease. Rashes, diarhea lowered my desire for sex. I have always been responsible with my partners and didn't do anything that would have infected them. I was always honest with them and let them know i was hiv poz. The majority weren't afraid and we only played safe. However, some were afraid and some even nasty about it. I've found out that gays can be more bigoted about people with HIV than straights. Never understood that. I've even noticed that same behavior today amongst gays. I always get pissed off with these looking for love profile websites with people looking for sex partners saying that they are Disease and drug free and expect you be too. Trusting anyone about their status is just crazy. Everyone should assume that everyone is positive and always play safe until you know for sure you both are negative. Saying you just got tested and you're negative is stupid because it could show up tomorrow. There is no excuse to come down with the virus now days. I've always been responsible with my partner who i've been with since 2001. He is negative and he will stay that way. It does become a hassle to have to take meds everyday but hey im 65 now and have to take meds for other reasons like blood pressure and diabeties and prostate problems. HIV is no longer a death warrant as long as you take your meds.
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