Sharon on Getting Sober and Getting Custody After an HIV Diagnosis
October 12, 2010
Do you find that a lot of people aren't aware of all this stuff, even today?
Yeah. Because if I wouldn't have told people that I was positive, they probably wouldn't have wanted to get with me, anyway. I'm clear on that, too. You know what I mean? And so, yeah.
But do you think that the women's world needs to be educated about HIV?
I always -- yeah, regardless of the lower risk, I still think so. Yeah. Regardless of the lower risk. Because we don't know. We can get erotic sometimes. We can be a little aggressive sometimes, you know what I mean? And things can happen, being a little aggressive. Everybody's not just real humble with sex. Some people are like rough with sex. And, yeah; I think it's really important, especially if one is positive and the other one is not.
Is there outreach going on?
Yourself. No. Not to my knowledge. Not to my knowledge. But it should be.
So it's all on you.
Oh, yeah. Yeah. And it's like, you know, I see -- you know, disclosure's big, too. I don't have a problem disclosing all over San Francisco. I've been on posters. So, you know, people see me, like, "You're the lady that was on the poster, huh?" I'm like, "Yeah. What do you want to know about HIV?" You know, it's not about . . . you know, all the other stuff. I don't want to go here thinking, "Oh, they're smashing me about my AIDS. They're stigmatizing me." You know what I mean? Don't even go there no more.
What tip would you give to someone who just found out they had HIV?
I would definitely try to get on the Internet and find some information around women, or find a women's organization, try to find and see what they know. Because what I do realize is that one agency might know something and connect you to another agency that might have more information.
The reason why I say that: because I had case managers. I had like five case managers just to be on my journey getting clean. And they all had different information. And they all helped me. You know, I got this information from this case manager, but this case manager knew how to get me housing; this case manager knew how to get me on SSI; and this case manager knew how to get me in therapy. You know? So I would definitely use the aggressive system and try to find women who have some information to help me.
Your story really tells, I guess, the story of someone who can still find a new life, even after all that darkness.
Yes. Change is reachable. It's scary. It's scary, because it's like walking into the unknown. Because when you get comfortable, when you live in a certain way, that's just where you is -- when you don't know how to live another way.
And then, when I crossed the fence, I saw. I understand now. I understand. You can vote when you're 18; I didn't start voting till I was 37 years old. You know what I mean? I'm a productive woman, because I can file for taxes now. You know? Wow. All these things. I can finally see how San Francisco looked. Because I was always looking down. I never knew that building was right there and it's been there all this time. Because now, my head is up. I got some self-esteem again. I got some integrity about myself. I got some respect about myself. So things have changed.
I don't look down on people, because I've been there. I know what it's like to be there. And so, yeah. Change is always scary. It's like walking into the unknown.
So what's your current treatment regimen?
And how did you choose it?
I didn't. My doctor did. Because I was on some other medication before then. And what happened for me was that she did a genotype test, and realized that something wasn't working. I was resistant to something. And she did her homework and came up and gave me the option. You know, she said, "Sharon, I did my homework around this medication. And I want you to know that's not working. That's why ain't nothing working. Your T cells are not going up; your viral load is staying where it is." My viral load had never been over 5,000. But it didn't go nowhere. It just stayed there for like a year. So I was still on the same medication and it didn't do anything. She did a genotype, and did her homework on the medication, which was Kaletra. And so she put me on Kaletra. She said, "It's your choice. I'm not telling you that you have to do it." At this time I was clean, so I did have choices. And I've been on the same cocktail for eight years. I've been undetectable for like eight years.
And what year did you start treatment?
When AZT came out.
Oh. So you were on AZT for all those years until the new drugs came out?
No. I was on AZT for like probably a year, and I stopped taking it. Because they didn't know what they was doing.
And so when you went back into care, what was your CD4 count?
My CD4 count was still kind of high, like seven-hundred something. And my percentage was like 32. I remember that.
How did you learn about HIV treatment?
Well, this is how I learned about it. I did a lot of workshops, right? I was going to a lot of workshops. I was going to a lot of trainings. And so every time we'd sit in a workshop, or something, a pharmaceutical would come in and he'd tell us about new stuff.
Those are definitely good places to learn. I just asked questions. "Will I have any long-term side effects? Do you know anything about those?" And nobody can ever give them to me because their research study was only two or three years, and then they put it on the market. You know what I mean? And so later on is when they start seeing stuff.
So I kind of educated myself. So I was like, "Well, I don't want to take Crixivan. I don't think I'm ready for Crixivan," you know? This was for me. And so, for a period there, I wasn't on any medication.
What happened? What happened to your CD4 count?
In that year. And your CD4 count just went a little bit down?
Yes. Just a little bit.
Wow. So you have a pretty good immune system.
Yeah. And for whatever reason, I don't know. I still say I don't know anything about this virus or how it's working in me. I just know that I've had it a long time. I just know I've really had it a long time. I done had it longer than most. And I'm just really grateful that things haven't happened. And I'm grateful for the medications, that I can live approximately another 47 years, you know -- and another 47 years. You know what I mean?
Do you have to do a lot of work to get women to trust the system, kind of? That the drugs do work and that you will help them? Is that part of what you do?
Yeah. That's not easy. That's not easy because I'm not the one to make the decision for them. I'm not a doctor, you know, or anything like that. What worked for me worked for me. What works for you is going to work for you. And I am not the one to tell you what's going to work for you. But I'm very clear on: What works for you, works for you. You know, my regimen might not work for you. You know what I mean? So I'm not the one to tell them that: "Do this and do that; take your medication."
Because that's the important thing. In taking treatment, you have to trust that it's going to work.
Right. And also, women have to trust us, too. I'm like, "Don't listen. Don't believe the hype." You know, "Don't believe it." You know what I mean? We can come in here and find out what's real, and what's not. So, yeah. I definitely come on through my ladies. It's hard to trust people. You know what I mean? I'm not a doctor. I'm not saying your doctor knows everything. Your doctor don't know how your body feels. Your doctor went to school for certain things. Your body talks to you; so listen to your body.
Great. Well, thank you so much for talking with me.
This transcript was lightly edited and features bonus material that is not in the video.