Please introduce yourself and tell us about your diagnosis.
My name's Mary. I live in New York City. I was detected with HIV in March 2000. At that time, my marriage wasn't terribly happy, and it's not any better now, but I was unfaithful several times. I thought I had pneumonia, and I went to the doctor to have that checked out. I had a high fever for a couple [of] days, vomiting water, all kinds of stuff. Really extreme, so the doctor made a house call. Believe it or not, in New York City they do that. I had antibiotics and then recovered from this "touch of pneumonia."
Was it really pneumonia?
Well, I don't know. He was kind of a lame brain sort of doctor.
Do you think you were seroconverting? That that's when you were infected?
I think I had already had the night sweats at that point, like the week prior, but I didn't know what all that was. I just thought I was getting a really bad flu or something. I hadn't heard anything in the news or anything about looking out for night sweats and things like that. All you hear about is AIDS and HIV prevention, but I wasn't informed about what to look for. I really didn't think it was happening to me, because you always think it's not going to be you.
I'm married. I have four children. The people I selected to be with were either married themselves [or] raising families, so I figured they were relatively safe, or had reasons to be careful or constant and diligent about their own status. At that seroconversion time, the person I was last involved with, as a matter of fact, to this day now is married and has fathered a child, and everything apparently was good on that end, so ...
When I found out, I was recovering from what I thought was a touch of pneumonia. I was teaching. About a month afterwards, I called the doctor, because I had what was a nodule in the back of my neck behind my left ear, but back, so it wasn't like a swollen gland kind of thing, and I didn't know what that was. He said, "Come in and see me," and that's when he did the blood test. So up until even that point, no one even thought about testing me for HIV or anything. Naturally I'm not going to advertise that I was unfaithful, you know, so it wasn't a thought in my mind about it.
He called me while I was working, because I asked him to, and I almost fainted in the hallway -- I was on my cell phone.
A huge dizzy wave passed over me, and I thought I was going to hit the floor.
He told you over the phone?
Yes. Well, I asked him to. People said to me, "Your doctor did that?" and I said, "I directed him to." You know, he didn't do anything unprofessional. Naturally, it was really upsetting. I went around for weeks, months, crying, hysterical, because first of all, my marriage was screwed up as it was. I have four children that I had to consider. I live in affordable housing as it is right now, and it's under my husband's name, so if I left I had nowhere to go. It's just not a goal for me to leave and leave my kids. I had to stick it out, but worse yet was I had to confirm that I was unfaithful to him, which was really hard, and since that time he just cannot accept me. He hates me.
We live together, but I have the bedroom. He sleeps in the living room, and that's his choice. I'm kind of relieved, actually. It's more like we're roommates, if even that much. We don't talk at all. We just exist.
But you both raise the children?
We both have -- yes. We're here with the kids. My oldest now is going to be 20 this year. My youngest is 12. Sometimes I wonder what's going to happen in the future. I don't see myself leaving. I did move out before finding out, actually. I came back home when I had the pneumonia. Because the marriage was difficult, I had moved out. I took a studio apartment just a couple of blocks away at an outrageous price that I couldn't afford that was about the size of a 10 by 10.
I did that hoping that he would say he missed me, or somebody wanted me, or the kids wanted me, but that whole plan backfired, and I got sick. And so I did come home. Throughout all that, he never said, "Please don't leave." He never said, "Please don't return." He never said anything throughout. So I kind of did whatever I thought I should be doing. To this day, he doesn't really talk to me except, "Where are my keys?" or "You cooking tonight?" You know, those basic things.
We have nothing in common, so I'm really alone with this whole thing. I don't know anybody who has HIV. I have no friends that have it. I share the information with the few friends I feel I can trust. I'd like to preach about it, but being a teacher and all, it could affect my kids negatively. My students' parents might have objections even though legally they can't object to a teacher with HIV.
Right, but it could present issues.
Yes, it could present issues, [though I did tell] one or two students after I was done teaching, when they had left the school, and I knew it no longer was an issue. You get interesting reactions from younger people. I'm 44. Well, I'll be 44 in a couple of weeks. Young people just don't think much of it. You tell them, "Hey, I have HIV. How do you feel about that?" They're like, "Oh, OK. Yeah? Cool." It's like, "Wow, you had chicken pox? How about that?"
It's not a fearful thing. I think people who are 40 and higher, 35 maybe and higher, that age group, are the people that still have the paranoia about everything or the insensitivities, the biases, the wrong information. You know, just, it's all negative stuff. I don't surround myself with negative stuff, so I just don't discuss it with people I know are going to react in a bad way.
You told me that a few of your colleagues at work are aware of it.
A couple of them are. One person I told felt sad for me and wanted to cry. It's no big deal. I didn't tell you so you would cry for me. I don't think about it that way. It's a pain in the ass, because you have to take medicine every day, but that's, I guess, like taking vitamins, because I got a real good regimen going on right now. But mostly it's hard for them, and sometimes I think they even forget that I've said it.
When you were first put on HIV medications, what were the meds, and are they the ones that caused the lipoatrophy?
I was on that for several years. I've never had a bad reaction to any medicines.
So initially when it was discovered that I had [HIV], I was pretty thin. I was drained. I was tired. I was going through the marriage issues. There was a lot going on that, again, I didn't even realize this was HIV. I just thought I was stressed, I was tired, I was overworked, all those things -- New York living, you know. I'm about 5'7", and I had dropped down to about 128 pounds, which, for me, was very drawn and thin-looking. I'm now around 140.
I took medicine. My viral load disappeared within months. Everything was great. I was textbook perfect. The T cells originally were around 343, I think, when it was originally found out, and actually the last T-cell count I had was about three and a half, four months ago, because the doctor now only is doing that to me twice a year. I was 1,272.
Oh, my God.
Yes, so sometimes I like to imagine. I kid with the doctor. I said, "You got the wrong folder. This is not me. I don't have this. You made a huge mistake."
Yes. That's remarkable.
It's pretty remarkable. I know there are blips, but that seems like a huge and mighty blip to me.
To my knowledge, there aren't really blips so much with CD4 counts. A high CD4 count is a sign that your immune system is extremely strong.
Oh, he says I'm healthier than regular people. It's good, because I tell my kids, "Don't worry about Mom," when this becomes an issue or my daughter gets sad if she sees something on television. I tell her, "I'm going to bury everybody else. Don't worry about it. I have to see things are done right, so I'm not going to die anytime soon." But anyway, yes, 1,272, and the one prior to that was somewhere in the upper 900s, so it may be a bit of a blip, but still, it's awfully high.
I wonder if it's possible. Is it documented? I don't know. I read information here and there. Is it possible that people can actually beat it somehow? Because I really do feel fine, and I never get sick. My medicines now, as we were talking before, are no longer the Zerit combination.
You switched off of that when ...
Yes, the doctor thought, because my lower face was getting thin, but it could've been the weight loss. It could be a number of things. It's a hard thing to put your finger on.
How big of an issue was it for you when you were going through it?
It wasn't so much my face that bothered me. My legs got really thin and athletic-looking, if you will, really lean. I used to have wide hips, and I was always noted as a kid for having a big behind. The problem was always, like most women, buying jeans where the waist was too big, but you couldn't get your ass in the pants, kind of thing, and this was no longer the problem. That's for sure. Now the problem is getting my waist in the jeans without the rest looking like a bunch of ballooning material.
Because you also gained weight?
I got thick in the middle. I'm all thick in the middle, but again, this is the problem. Because I'm 44, basically. This could just be middle age now -- body changing as you get older. I did have four children. People tell me these are factors, as well. Your metabolism slowing down, all those things. So it's hard to pinpoint, but the doctor did say as far as my legs and my limbs having become particularly thin -- my chest definitely did get larger by a good size or a size and a half -- that those things were indicative to him of lipoatrophy.
But it was interesting. Being a vain, younger person, I had written once on a piece of paper my body measurements, and my waist was about a 28, my hips were somewhere around 41, 41?, and under [my] bra line I was about a 34, 35, and now under the bra line it's about 36 or so. My waist where my naval is is about 34 on a good day -- it depends if it's morning or night. My hips are, sadly, about a 35 across my hip bones. I have no behind.