This Positive Life: Tyrone Lopez on Being an HIV-Positive Voice in the Tohono O'odham Nation
August 1, 2013
Are you in a relationship now? How has being positive affected your relationship history, and your being in relationships with men?
I haven't been in a relationship since I was diagnosed. There was a person that wanted a relationship with me, and I kept on putting it off. Then, one day -- I think it was in December -- there was a feast day, and we're talking and we're driving. He was asking, "When are we going to start dating?" and this and that. I finally told him that I was positive, and I'd rather not date; I'd rather have a really good friend.
I met him at the Man2Man seminars. He goes, "Why not? I use a condom. That's nothing." I was like, "OK, but I still want a friend first, before I do anything else." I still keep in contact with that person, and we're still really good friends. But I haven't really dated anybody, probably since 2003.
Can you talk a little bit about the kind of work you do?
I do HIV prevention. I work for the Tohono O'odham nation, and I've been working there since 2008. There was two of us until last year; now there's three of us. I usually do the HIV 101 and then I go over a little bit of the history.
They're kind of interested about that. But then I usually tell them, too, that I've been tested: one was in 1997, and the other one was in 2003. I go in front of them and ask, "Look at me. Do you think I'm positive or not?" Some of them guess. Some of them know me because they've been in my session in jail. I usually tell them, "If you've been in my session in jail, don't say anything. You can't participate."
In jail? So this is prevention education you were doing in jail?
I do prevention on the nation in the different villages. We also go in jail and we do the STDs. Right now, usually on Wednesdays, I go do STD screenings for chlamydia and gonorrhea; and then I draw blood for syphilis and HIV, unless they opt out. Then, I do educations on Thursdays in there. So most of the guys and most of the ladies know who I am.
Sometimes I do some of the schools, like the BIA schools (Bureau of Indian Affairs schools); sometimes we get in there. Right now, they're really focusing on the Ames test, so it's been harder for us to get in there.
The Ames test? Can you talk a little bit about what that is?
The Ames test is just a standardized test that they do to see who to graduate. Like, they should be at a certain level of reading, writing and arithmetic. So, right now, they're more focused on that than anything else.
But we do go into certain schools. I just basically walk around and ask them, "Do you think I'm positive or not?" And I write [my status] down on a piece of paper. Usually, I have them raise their hand, or stand up, if they think I'm not, or if I am. Then I break out the paper and show them. The majority of the time, some of them are like, "You could be my dad." And it's like, "Oh, maybe if I had you at 14. Depends." Most of them are OK with it.
I usually tell them, too, it's like if you ever go to a conference and they talk about HIV and AIDS, they say, "How many of you guys know someone with it? Raise your hand." I tell the kids, especially, "Don't raise your hand; stand up." I say, "Be proud that you know somebody with HIV and AIDS that's out there, that you can get information from, and that has no problem talking to you up front. Don't be raising your hand; stand up and be proud." And I say, "That's fine. You know, I have no problem." I say, "You can even tell them my name. I don't care."
And I usually tell them, when I go to those sessions, "Well, what about rural? Because you're leaving those out. What's going on with Native Americans?" Because we're finding out that a lot of Native Americans are getting diagnosed too late. They may live maybe a couple of years, then die. Our rate of death is high. With the other minorities, they can live a lot longer because, one, you have all kinds of organizations that are focusing on them. But, as far as Native Americans, we don't have that. We may have it once in awhile. Like, social media, we don't have that. We're just standard. We make phone calls. We maybe text. That's probably as high tech as we go. But as far as, like, Los Angeles: They may have transportation, where they can put up posters and say, "This is a Native American." They may understand why to get tested, and everything else. But like I said, you're talking about a nation that's about the size of Connecticut, and three people working in that.
We're also talking international. We haven't gone past the border, yet, of the U.S. and Mexico; because our reservation does extend into Mexico, as well. So we haven't done that. But we do have a community; we work under Community Health. And they have an O'odham in Mexico program. So, if we're looking for somebody, or need a translator, they're usually there. We try to help each other help. The Community Health representatives help us out, as well, if we need help. They may volunteer for health fairs, or district days. We have all these little things that go on throughout the year. So, if one of us can't make it ... but we usually try to do it in twos.
It's funny, because sometimes, like ... We just bought this warming gel for the women. And they're like, "I don't know if I'll like that." I said, "Well, take two. See if you like it. Try it." Then I'll see them later on: "Do you have any more of those?" It's like, "Yeah, how many you want?"
Or even the female condom: A lot of the ladies, they've never seen a female condom. And the first question is, "When did this come out?" And it's like, "Uh, I don't know. It's been out for a long time. That's all I can tell you."
How do you manage your own health while being so busy? How has your health been now? And how have you managed diabetes and HIV ... and life, basically?
Well, diabetes, I go up and down with. Right now, the last time I did it, it wasn't so good. It was kind of up.
Your sugar level was up?
Well, my A1C, which measures the sugar level within three months. And so, the second-to-last, I was at a 10, which isn't good. The last time it was, I think, a 9.4. So it came down some. Managing diabetes is a little bit harder because I can't really get to the gym like I'd like to. We do have an hour for lunch, and we do have a gym on the nation. But half the time I just can't get to there, because we're either doing something or making calls, or whatever -- checking up on people. I would like to because, when I first started, I was at 185 pounds. Now I'm at 230, so I gained quite a bit of weight. I would like to cut that back, at least to 200, and then go from 200 back to maybe 185. So it's kind of hard.
How have your CD4 count and viral load been recently?
My CD4 count is any place from 6 to 800. And my viral load is less than 50.
Undetectable, but they want me to go a little bit more. And it's like, well, I don't know how to do that. It's the medication!
Have you been OK? How has the HIV med regimen you've been taking treated you, basically?
I had a hard time with it at first, because I was taking, I think it was, Sustiva [efavirenz, Stocrin] and Combivir [AZT/3TC] when I first started. My body was still kind of getting used to it. Then they gave me Sustiva and Truvada [tenofovir/FTC]. Now I'm on Atripla [efavirenz/tenofovir/FTC], and it tends to work out. The only bad thing about Atripla is you can't eat two hours beforehand, and two hours after. They'd rather have you take it before you go to sleep. So, between 9 and 10, I'll take it.
But, sometimes, I haven't eaten,then maybe I'll have a little snack in between. But as far as the regimen goes, I haven't had too much side effects. I did have insomnia once in awhile, and I think that's just because of everything on my mind. You know, just like anybody else, at night, you tend to think, "Oh, I didn't do this. I didn't do that." So that insomnia plays a role.
As far as everything else, I think I'm one of the lucky ones that hasn't really had too much side effects at all.
Could you compare how you feel about having HIV now to your feelings when you first found out that you were positive, and how have they changed?
At first, like I said, I really didn't tell anybody. And when I was working in Phoenix, I was working with Native Health. We were doing outreach to the GLBT groups. We'd distribute condoms to the male prostitutes, the female prostitutes. I got to know a lot of them and asked them if they'd been tested recently; and if they hadn't, why they should; if they used condoms or not.
Once in awhile, I think about it, and it's like maybe this is what God intended me to do. You know? I think about it sometimes, and it's like I don't think I was a really angry person about getting this, HIV and AIDS -- or, AIDS, actually, now. I don't think I was really mad at anybody. I was probably mad more at myself than anything else. But then I figured this is probably what He wanted me to do.
And I accept it. I accept everything that I do. I try to be a little bit more better at what I do now than anything else. But sometimes it does get me. Because you do have clients that aren't adherent to their medications -- they're not taking their medications like they should. And you just want to grab them and shake them, like, "You can do this! Come on!" But it's up to them, as well.
And I know finding out you're positive [is not easy.] Like I always say, change is hard. Especially now, since you're positive. Now you even have to change your way of relationships. You even have to change your way of eating healthy, or trying to eat healthy -- especially if you don't have money. I mean, how are you going to get your medications? Granted, they have an ADAP program. Indian Health Services also has medications there that you can get. But it's just the thought; you know, trying to get to Indian Health Services to pick up your medications.
Because right now transportation is the number one issue for us. Some of our clients will call us and say, "Can you pick up our medications?" And we'll be happy to. But some of them are still not out. They'll have us meet them someplace else, which is OK, but we encourage them to try to come out, at least to their families. We usually tell them, "You don't have a scarlet letter on your forehead saying HIV. It's more like nobody can tell."
So that's what we try to do. But for me, it's been an experience. And I'm happy with it.
Is there anything else that you want to share or add at the end of this interview?
The only thing I probably should add to it is: Know your status. Get tested. Because that's what we always say. It's best to know your status. I know it may be hard at times. Because you know what happens behind the closed doors, you guys; people know what they do behind there. I think that's what mostly scares a lot of people ... they know that they've been doing risky behaviors. And they may be ashamed of it. And they probably have an idea what their status may be. But, you know, get it confirmed.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.
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