Friday, February 27, 2004



My pain has many voices.

When I woke up this morning, all of my meds had, of course, worn off. I was awake but still, just... listening. My hands were well past whining and into the wailing stage, as were my feet. The skin over all my incisions felt like it was being pulled and twisted, not excruciating but enough to say, "Hey, what's going on there?",the same way you do when your 3-year-old repeats the same whiny sing-song refrain in the backseat of the car. It's nothing, really, you just notice it and it drains your energy. And it makes you grumpy.

Then the back-hips-legs join the chorus when I finally start shifting around to get up. Those are more like "yip yip yip" little coyote howls of surprise and shock and general "I don't like that!".

When I finally hauled myself out of bed, I saw that overnight, some kind of front blew in and the sky was completely overcast. There was a fine drizzle keeping everything nice and damp. There have been times in my life when I love this weather -- it's not cold enough to be really raw, and the moist air on your face feels like a million fairy kisses. But not these days. Now, wet day like this mean that everything just hurts worse than it normally does.

Yesterday at this time, I was typing and my hands weren't saying anything to me at all. They just worked. There wasn't any constant undercurrent of conversation between my hands and my brain: "Ow...ow... shut up, nothing I can do to make it better, just keep going, it will hurt even if you stop typing so why stop... ow... ow... ow... shut up shut up shut up..."

Today, with the damp, I'm competing with my body to keep a straight thought in my head and get it out onto the screen.

People who don't live with pain every day have no idea what it's like. My main thing is that it's incredibly distracting, always having random body parts, often more than one, calling attention to itself. It's also exhausting. I was going to say, "but Life is exhausting anyways" when I realized that maybe Life isn't exhausting for everyone, maybe it's actually exhiliarating and energizing for some people. I vaguely recall having some times like that in my life.

I've had pain in my life for as long as I can remember. Most of the time it's not the sort of thing that would make anyone else give a moment's thought to, but there it has always been. When I was really little, I had ingrown toenails. Now, that doesn't sound like much of anything, right? Well, when you're 4 or 5 or so, and everytime you put your foot down to take a step, your toes feel like they are being stabbed, believe me, it becomes a factor in your life.

Early on, I learned to guard myself. Guarding is the medical term used to describe behavior, sometimes unintentionally destructive, that people with pain engage in to spare themselves further pain. An example of guarding is not breathing deeply enough after surgery, because it hurts to breathe deeply. The problem with that is you can develop pneumonia (fluid in the lungs) if you don't exercise them properly. And so post-op nurses bully their patients to breathe, and to get up and walk around, to prevent guarding from causing serious complications.

In my life, the pain was never bad enough that anyone really ever noticed me guarding. I was a bookworm at a very young age because, let's face it, being stabbed in the feet is a clear loser to curling up with a good book and reading about someone else's adventures. The fact that I had no adventures of my own was immaterial to me, because it was obvious I couldn't have adventures when that meant walking around with bloody socks (I'm not kidding) and being in constant pain.

Some things changed as I got older, but some things didn't. At a certain point I decided I could handle the pain because I wanted to take ballet, and so I did. So I consciously decided to stop guarding and start living more, but the pain was always there.

When I got to college I finally fixed the toenail problem but there were other pains to deal with. It took over a year to diagnose my PCOS (polycystic ovarian syndrome) which was ridiculous... never go to an internist when a gynecologist is the one you need. But I also had irritible bowel syndrome so that did complicate the diagnosis. After college I went through a period of about 6 months where literally the only things I could eat that didn't give me stomach ache were rice and bananas. Then there was TMJ. And migraines.

And that way-too-familiar feeling, every morning, of having been hit by a truck.

A lot of these things resolved when I extricated myself from a bad relationship, but really they just went into remission for a while (except the migraines, those have never returned, thank God.) I actually had quite a few good years, until about two and a half years ago when it all started to go downhill again.

It has been only quite recently that I was able to recognize and admit that I have been in pain for a lot of my life. Thanks to Max's prodding, I've been thinking about the decisions I've made in my life, and whether or not that pain contributed to them. I believe that it did.

When I had my surgery recently, every single person that "worked on" me was a woman: the surgeon, the anesthesiologist, the OR nurse, the recovery room nurses. Sure, nursing has traditionally been a woman's field, but to have both drs be women was pleasantly surprising to me. They were both a little younger than me, or right around my age, I think.

It made me think, I could be doing this -- why didn't I go into medicine? One big reason? Not one person even suggested it to me, in spite of top marks in chemistry and biology in school, and a very deep interest in how things worked, etc. It's not that they didn't think I was capable of carrying the academic load: everyone encouraged me to apply to MIT. It simply never occurred to me to go into medicine, and I really don't know why.

But I think part of the reason is that it is a lot of work, and physically demanding, and even if I never consciously thought about it, unconsciously I recognized what it would be like and just ruled it out. I was not one of those people who gave 110% to everything; I did what I needed to do to get by, and I got by very well.

What if I hadn't been in pain? Would I have been more willing to take a harder course of study, to challenge myself? To believe that I could succeed in something that wasn't the easiest way possible to finish?

Who knows? All I know now is that a good deal of my life was spent avoiding situations that put me at a disadvantage, because I was tired or in pain or just couldn't concentrate enough to do well. Now I'm raising 3 kids and pretty much on the spot all the time, and I can very clearly see what I did growing up, and I sure as hell don't want my kids doing the same things.

Of course, they're not (yet). They don't have pain. They get bumps and bruises and shake them off and go on. I love it.

As for me, I'm on the hunt, now. I want to know why everything went "Sproing!" when my youngest was about 4 months old -- how exactly did that last pregnancy de-rail my health, and what can I do to get it back? This is a long and expensive process, and no one has any answers for me so far.

I have to get over this gallbladder surgery first, before looking into anything else, but for now celiac disease is still my number one suspect. Since it will be at least a month before I can do anything about that, I'm going off gluten and seeing if it makes a difference. Everything is so screwed up post-op that it will be impossible to interpret anything for a while, but if I do have celiac, maybe it will help a little.

I'm also finally taking the pain meds that rheumatologist gave me to try, and seeing if I can get back to a pain-free life for a while, even if I need meds (and pricey meds, at that) to do it.

Reviewing personal history can be rough but illuminating. I'm sure there will be more of this, since I'm still dealing with the "what do I want to be when I grow up" question, more or less -- all those past decisions, as guarded as they were, have led me here, and now I have to decide where to go. It seems pretty obvious that -- for now -- the writing is the thing, and I'm very cool with that. But that has it's own pitfalls, too, and if I find myself in a spiral of isolation I'm going to have to do something to get out of it.

So far, so good. I think!

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