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.
Those are real changes.
Yes, to me very significant, but if you met me now, you wouldn't know these things. So, to you I probably look just fine.
With men lipoatrophy seems to hit the face more, but they have said just what you said, if it's not a bad case. People who would meet them would say, "Well, you have a thin face," or, "You have high cheek bones." But they'd say, "But you don't understand. It's not my face anymore."
It's a different body.
I avoid looking at my body in the mirror, to tell you the truth, because it disgusts me and depresses me, because, like what you just said, this is not me. People say, "Oh, you look fine. You look great. You look so healthy. You have so much energy. Wow, look at you, and you're a teacher, and you're a mom, and you cook." Like I'm a super human being, and I'm like, "Yes, but this is just not me." I feel like a mutant, and I hate going clothes shopping. I don't even know how to dress myself anymore. Do I buy the old lady, really loose, long shorts? What do I buy? Do I wear tunics? I don't want anything to cling on me, because I'm so self-conscious about it, so I wear vests a lot now.
If I can get away with it at work, and no one notices, I go for yoga pants, gym pants, as long as they don't have stripes down the leg or something, anything stretchy.
Have you noticed since you've stopped taking the Zerit, and now that you're on a different regimen, that this process is beginning to reverse?
The regimen changed in the sense that I don't have the Zerit anymore, but I still have the Viramune, and I have one of those combination things, Epzicom, which is Ziagen [abacavir] and Epivir.
Yes, but as I understand it, the other drugs that you mentioned, they're not really connected with any of this.
Right. Exactly. So what I'm saying is it's pretty safe to say whatever change I've made is due to the Ziagen-Zerit changeover.
Yes, exactly. How long ago was the change?
A couple of years ago now. I honestly don't notice much of a change, really, unless I'm being too critical of myself or had higher expectations. My legs are still thin. My waist is still thick. Maybe my upper arms have gotten a little heavier, but again, that could be the age, the old lady jiggle arm thing kicking in.
I also thought that you were exercising.
Yes. When school's on, every Sunday I go spinning, and I do a body sculpt class. That's a good couple [of] hours, and I do it hard as I can, so I get my heart going up by 180 or so.
Yes, I'm pretty intense when I put my mind to it. But when school's on, during the week, it's just too many things -- doing laundry, groceries, cooking, blah, blah, blah -- to get there. When school's off, or I have a day off, though, I do go there. So in the summertime I'll go maybe three, sometimes four, times a week. I like it, because it's a place to get away from my home environment. You put on a headset or something, and you're removed from all the things that bother you for awhile. But even with that, as much as I do it hard, I've had knee surgery. I tore an ACL [anterior cruciate ligament], so last summer I had that replaced. I have a piece of a cadaver, which is pretty cool. I have this bionic knee. From years before -- because I played a lot of racquetball and paddle ball -- and I'm very flexible. I dislocated my right shoulder a number of times, so I tore my ligament off of my shoulder blade. So I had a surgery and it was all tacked down, and now my knees are getting arthritis, the doctor had said, and now I'm having pain in my hips. So I think it's just genetically predetermined that all my joints are going to fall apart. My heart will keep beating, but I won't be able to move.
The gym thing, you know, I have to be a little more selective about which equipment I use or how I use it. As much as my mind wants me to do what I could've done when I was 20, [I] can't jog on the treadmill. When I try, my hip starts to click and hurt, so there are compensations you've got to make. Yes, I did do that.
So back to the question about the medicine. I don't notice a whole lot of change. Like I said, about my legs, at least, my hips, my behind, nothing. I do exercise to try to at least maintain some sort of physical fitness. Because all the fat's going to my middle, which adds strain to your heart and your internal organs, that's a concern. So I think anyone going through this should be exercising, not so much to lose weight, but just to keep the cholesterol down.
How is your cholesterol, triglycerides, all that?
It's really low. Everything -- I'm textbook perfect.
Like I said, I seriously want the doctor to retest me for the HIV, because sometimes I wonder if it's still there. Everything is just so good. The only thing that I can say is not great is I have a low red blood cell count.
What could have caused that?
He says that could be the medicine doing that. He asked me, "Are you tired?" Again, I never know when I'm tired. When I first found out I was sick, apparently I was pretty anemic. I had about a 9.1. I guess that's hemoglobin count or something, and I think women are supposed to have somewhere around 12.
When the doctor read the results, he gave me a very strange look, and I looked at him, not knowing why he was staring at me that way. I said, "What's the matter?" He says, "Do you pass out? Do you faint? Do you fall asleep in the middle of the day for no apparent reason?" I said, "No." [He asked,] "Are you very tired?" I said, "Well, isn't everybody?"
So I don't know. He thought I was pretty anemic, and I should be just dropping off everywhere and not being able to function. I tend to not acknowledge my pain or my tiredness and stuff. So when you ask me, "How do you feel?" I'm never going to say I don't feel great or anything, because I just don't know what the difference is. It's all state of mind. Anyway, my meds now are this different combination. I've been so undetectable, and everything's been wonderful. I've been really good at adhering to taking the medication; the only [dose] I ever missed was occasionally the nighttime dose. I was taking it twice a day, morning and night, and, again, hectic lifestyle, taking care of kids, doing homework, cooking dinner. There were times when I'd then be so tired I would completely forget the pills. I think, to be fair, since 2000 I might have missed them a total of seven times.
That's pretty impressive.
But even every time that happened, I would have a blip on a result and I'd panic. The one miss would cause my blood tests to change.
Then you saw a correspondence.
I kept telling the doctor, "Can't we, with all this new stuff that's being discovered, can we try [strategic interruptions]?" But he kind of scared me on that. It's my life, and I don't want to gamble with that. I probably would be okay with it, but I'd hate to gamble. Everything [could] plummet and [I might] not be able to get back [to where I was]. So I've decided not to do that.
What was it that your doctor said?
Well, he told me that he'd been watching the results and goes to conferences. I now have a different doctor, by the way. There's not enough evidence to safely say that this is a good idea. He's more conservative, and that's what I'd prefer. I don't want to live on the edge.
We've made an adaptation, however, which I absolutely love and recommend to anyone, which is now I just take it once a day. It's every morning, and I just double-up the Viramune. So I take two Viramunes in the morning with the Epzicom, and that's my whole day.
The amount of Viramune isn't too much and then too little or anything?
No. Everything's been cool.
Did you talk to your doctor about that?
Yes. He suggested it, because he knew I was getting really stressed. When I missed one, I'd just flip out. I'd be like, "I'm going to die." So we did that, and it's got to be going on a year now or so that I've been doing it this way and I haven't missed a single dose. It works for me. I buy a pill box that has four compartments per day, but since I only take it once a day, I fill the pill box for the entire month [and] it sits there in the kitchen. In the morning, you go make your coffee, your tea, whatever, and I just take the pills then. I take a vitamin. I take an antioxidant. Occasionally I'll add calcium or a multi B vitamin. Sometimes I'll go for fish oil. I juggle things around. Certainly not the medicine, and I always take the multivitamin. Oh, and I have a thyroid issue, so I have to take that in the morning, but that's an itty bitty little nothing pill. It's inconsequential.
Have you considered any treatment for the lipoatrophy?
Well, the doctor once suggested going for Serostim [somatropin], human growth hormone. But insurance wouldn't deal with it.
You can appeal it.
Well, you know what? I don't look like I'm deathly or dying. I guess I could live with this body. As much as it's not my body, it's not the worst body. So I can tolerate myself, since I'm not meeting anyone anyway. And I haven't had sex since 2000, which is kind of sad and sucky, and then I want to cry.
You know? People say, "But you look good, and you're so outgoing, and you're such a nice person, and why should you close yourself off like this?" It's like, "Well, I don't know anybody, and how do I do this? I can't meet anybody." I've tried going to the Gay Men's Health [Crisis] place, [but] it was all people not like me. I just [want to meet] people like me: regular, heterosexual people, married, whose partners reject them, and have kids and the whole thing. Generally it's someone who's either a homosexual or a drug user or was a drug user or a homeless person. So I feel really, really isolated about that part.
Are there no women's support groups?
Tried that, went, had it all set up to go to one. The counselor called me and canceled it, because there weren't enough women who were going to attend it.
So that fell through. Then I checked another group that was near to where I live, but that just seemed like a place to sit around and bullshit and whine. I didn't want to sit around and bullshit and whine. I thought the whole point was you're supposed to have a positive attitude and be spiritually uplifted and feel good about yourself. All these things will aid your immune system, and so I'm ultra-happy. I try to be that way and not surround myself with negativity. So I don't think those places are what they should be.
It also sounds like you access information.
Well, yes, I go to TheBody.com occasionally if I hear something. I get POZ magazine, too, which I like. I once wrote a strong letter to them a few years ago that was published, actually. Then they contacted me about possibly continuing some kind of dialogue as a heterosexual person with HIV, but they never followed up, and I didn't pursue it. But they have changed their format, and my initial letter was that I kind of griped at them that it was for homosexual men, because it's directed that way. I was pissed off. I said, "I'm alone as it is, and now I look to this resource, and there's just nothing here for me to relate to, and so it's not helping." But they've now changed, and they have women on the covers and moms. It's kind of reflecting the way HIV is changing the planet.
Absolutely. More women are infected now than men.
Did you look into the POZ personals?
Yes, I did that once. There are predators and flakes on that.
I'm sure there are, but they have something like 20,000 people now, so they must have some good people.
Maybe I will recheck it again. Maybe in the summertime when I'm not busy, and I can just devote myself to looking.
Right, because I know some women who have actually made friends.
Well, when I had done it, I did it requesting to be friendly with a man. I didn't want any relationship. I just wanted to have a man who was a friend, because I tend to get along better with men than women sometimes. I think women can be kind of catty and competitive, and bitchy. I just didn't want that. I just wanted a regular guy to be my friend, and that was it. I clearly always lay it out on the line, even when I had my infidelities. You know, I'm married, I have four kids. This is my life. This is how it is. Nothing can interfere with that.
[So] this man was talking to me. I like intelligent people, and he was intelligent. Ultimately I backed off. I said okay, I would meet him. He was, first of all, physically nothing like what he described. Ultimately it turned out he didn't even have HIV. I got very upset, and I said, "So why are you on this Web site?" He said, "Well, I probably could have it. I've never been tested, but I think I might have it, and in any case," blah, blah, blah. But I was just pissed off he was lying, and it wasn't right.
I was looking for someone who could relate to what I'm talking about, not someone who's going to whine along with me. I just wanted someone to understand. Like when I told you my T cells were at 1,272 and you reacted like, "Wow, how cool is that?" I could tell that to other people and they have no clue what I'm talking about. It's like talking to the wall, you know?
Well, you won't find that person unless you go out looking for them.
I've got to say this. Sometimes I wonder -- I watch a lot of sci-fi and movies and stuff on television. I wonder as I walk down New York City streets if we could see if everyone who had HIV had like a color or an aura around them.
I look down the street, and I think, "I wonder if that person has some aura or something and I'm just not sensitive to seeing it, but I bet that person has it." I bet the whole street's going to light up with little yellow auras indicating they all have this, and no one's talking about it. What if we could just all say, "Yes, I have it"?
That's so interesting.
It would be really cool.
But that's one of the reasons why people are so upset with lipoatrophy, because in bad cases it was making a statement against their will.
But your case of lipoatrophy never reached that point. People weren't saying anything to you, were they?
No, it's just people have said to me, "Well, you got very thin" or "You look thin." They don't see my waist because, like I say, I try to hide it. I don't tuck shirts in anymore. Now with these horrible new jeans styles being low-rise -- I can't stand those. They just make you look fatter and fatter.
Yes. They're made for 16-year-olds.
Yes, they really suck. So I hope the style changes really soon back to high-waisted, sort of 1940s, '50s, kind of things, like old Hollywood. Who was it? Lauren Bacall or someone? I forget. Somebody who always wore these nice trousers; they were high-waisted, but real slimming looking.
Oh, yes, like Katharine Hepburn.
Maybe, yes, yes. I like that.
No one could wear trousers like her.
It's like I'm forever looking for the trousers that look like that, and I like vests. Vests also hide issues.
Thank you so much for taking the time to talk to me.
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