Stylin' Friday: Lipodystrophy, Part II

I have been struggling with changes to my body shape over the last two to three years. So here I'm going to mix some explanatory prose with a small series of limericks to talk about some of the impacts that this has had on me. And then, if you read the previous post, I will finally get to the crowing.

At a certain time about two years before I was finally diagnosed, I very suddenly lost about twenty pounds. At the time, I welcomed it and attributed it to my having become much more active by joining a gay and lesbian country dancing club, which I adored and went to at every possible moment. In retrospect, this was probably the moment at which my immune system really starting losing the battle against HIV. Flash forward to the diagnosis I sometimes refer to as 'zero to AIDS' in a few short minutes: I developed PCP (pneumocystis carinii pneumonia), an AIDS related opportunistic infection, and then I got tested for HIV, already knowing what the outcome would be. But I've talked about that in a previous post.

In the early years of being treated, I did gain back the twenty pounds I had lost earlier, but that where I stayed. I felt like I could pretty much eat what I wanted and either the virus or the treatments would take care of the excess. This brings us to our first limerick:

For years, it was 'eat what you want'
The virus risks making you gaunt
So indulge while you're here
But watch your back, dear
The habits will come back to haunt

Then I started to notice the hump growing on my back. I made a few changes in my life, like quitting smoking to get better control of my health, but I also gave in to the pain in my hands and feet from psoriatic arthritis and participated less in my beloved country dancing. I also got older (I guess I couldn't really stop that one from sneaking up on me!). I refer to this as a perfect storm of factors — aging (and consequent changes in metabolism), inactivity (sometimes due to pain), quitting smoking (also apparently with impacts on metabolism) and a legacy of taking the same HIV meds very diligently over a period of seven and a half years (at least two of these associated with certain metabolic impacts) — and this perfect storm led to some very rapid weight gain. Limerick number two, maybe?

Quit smoking, ate less…but not great
And put on a whole bunch of weight
Arthritis and AIDS
Made for less active days
Plus maybe a small dash of fate?

I gained what for me was such a nightmarish amount of weight that I have now been thoroughly converted to expressing my weight in kilograms rather than pounds, as it sounds a little less extreme, at least for someone raised on pounds. ;-) To situate this, I used to refer to the 200 pound mark as my 'nightmare weight' and even made sure that my doctor, weighing me once at 199.75 pounds, did not round up when he wrote in my chart! Now that benchmark seems like a distant and happy dream time.

All of this has had a lot of impact on my life. I have had to buy new clothes and new kinds of clothes. Shirts with collars that are not meant to be tucked in: the collars actually help disguise the hump like no t-shirt ever could (and forget about something like a tank top — no more of those for me!) and the mumu approach (untucked shirt, oddly often with tropical patterns) at least makes me feel a little less bulgy, even if it is not fooling anyone else. Physical discomfort at every turn.

The worst part, however, is what I get from other people. I stopped going to my country dancing club after a couple of comments (different people, different occasions) about my weight that I cannot even imagine myself saying to someone. I wrote about that here. I had enough self esteem on those couple of occasions to strike back with comments like: "I can't believe you feel like you can say that to me" and "You're not so thin yourself" but I quickly soured on turning my leisure-time activities into a campaign for tolerance. Leading inevitably to our third limerick:

I've had to buy tons of new clothes
To cover the body that grows
But despite the new style
I just cannot smile
When the comments I get are like those

I became so depressed about my body shape and my isolation (is it self-imposed when going out leads to painful experiences?), that I had a period of extreme depression this summer. I couldn't string together five words without crying. By chance, one of my worst days fell on a day of a visit to my doctor.

Now, I have had various experiences with undiagnosed depression through my life. Like most kids growing up gay or lesbian, especially those of my age, I had to struggle with coming to terms with my sexual orientation and with the ridicule or harassment of my peers. I spent a lot of time in high school considering suicide, but not talking about it lest I have to talk about my underlying struggle. I have also always had a poor body image, even while I am confident in my intellectual and professional self-image. Having HIV doesn't help, and I'm sure that my new HIV meds (or at least one of them) probably shouldn't be taken by someone with a background of depression (pronounced central nervous system side-effects). When I heard tell of a study which suggested that even this 'new to me' medication (I had chosen it about two and a half years ago for its lack of association to metabolic complications) might be associated with certain metabolic complications, I really felt like stopping my meds. "A little wasting might do me some good," I thought. (I wouldn't charge ahead with some notion of stopping my meds without taking care to ensure that I wouldn't develop a resistance to them in the process of stopping.)

My doctor did all the probing for suicidal tendencies with which I am all too familiar from having worked in community-based social service agencies for the last 17 years. Did I have a plan? I kept thinking that if I really had a plan that I was at all serious about carrying out, I wouldn't be talking about it with him. Mostly, I want to be careful to maintain the validity of my life insurance so that my family will derive some financial benefit from their investment in me over the years. I also don't want to hurt them, so it makes the whole suicide thing a bit problematic (especially as I have no doubts about their love and support). Stopping my meds, however, would cause me a slower death from AIDS, which we could all be expecting anyway. (But I have moved on from those thoughts for now.)

At least this time I had some other options. A psychologist I could start seeing, covered by medicare, to help me work through some of these issues. And despite the fact that this post has become inordinately long, I keep promising to crow, and that's the part that's coming up (alas, no limerick!), so I continue.

I made a deal with the psychologist to help me overcome my inertia to start exercising again, and I think it is working well. There are a couple of elements: a pre- and post-exercise diary to record my thoughts and moods surrounding doing the exercises, and a series of photos I will take (only once a week, front and side) to follow my progress over the coming months and years. I am realistic about this process taking a long time and won't be discouraged when this week's photos show no difference from last week's. But I am crowing about the fact that I have managed to do my home exercise routine for four of the last seven days (had a bit of trouble adding it to my mornings on work days, but I did manage to do that yesterday, so there is hope).

I started slowly and did plenty of stretching and I will build up to what I expect from myself over time. But I am doing something and that is worth crowing about.

PS: It took me a long time to come up with a new style for Stylin' Fridays, so I have decided to make a structural change that will also bring me back to a promise from my original post. From now on Fridays will become Fridays en français to help me exercise another part of my brain. Let's see if it will start next week!