The Tale of Woe

Note: The following is a self-serving, somewhat whiny account of my chronic pain condition. No one likes to hear about a chronic pain condition. It’s why pain doctors and psychiatrists get paid so much. And why my husband would be up for sainthood if he weren’t an atheist.

I joined Powder Room Graffiti, a women’s online community (because I don’t waste nearly enough time on Facebook), and one of the questions they asked when I signed up was, “What advice would you give to your 20-year-old self?” Oddly enough, I’d just been lying in bed, staring at a 15-year-old photo of some girlfriends, and thinking about that quote, “Youth is wasted on the young.” And then, because I’m me and nothing is ever easy or simple, I started analyzing: Presumably the crux of that statement is if you had the chance to go back to, say, your mid-twenties, you’d be able to appreciate everything more. Your body. Your freedom. Your ability to drink heavily, sleep on the floor, and not feel like you’d been run over by a truck the next day (or at least not care). You’d do something with your time and exuberance. You’d make it count.

The problem with my little space-and-time-bending scenario is that when I was 25, I was a mess. Not like an “I don’t know what I want to do with my life so maybe I should backpack through Europe or move home and be a ski bum for the winter” type of mess (I’d already done all of that). No, we’re talking unemployed, experiencing a considerable amount of physical pain, and depressed from watching my once upwardly mobile life slowly swirl down the drain. When I was 25, I developed what we eventually figured out was fibromyalgia — basically a mysterious chronic pain syndrome that does a sort of creepy crawl to just about every part of your body and causes a whole lot of other problems in-between.

I was born a driven, semi-perfectionistic person, so chronic illness was definitely not part of the plan. Saying I was “depressed” about feeling like hell all the time and having to rework my entire life is an understatement. I never bought razor blades or gathered all of my meds together in the bathroom with a bottle of vodka, but I won’t say the idea didn’t sound pleasant on numerous occasions.

We tried practically everything under the sun for years and years to make me feel better: physical therapy, chiropractors, massage, acupuncture, acupressure, antibiotic therapy, vitamin supplements, herbal supplements, Chinese herbal supplements, trigger point injections, electronic muscle stimulation, every pharmaceutical under the sun. Nothing worked.

I finally got some relief with manual therapy (which Tenzin pooh poohed until he tried it himself — now he thinks it would put a lot of orthopedic surgeons out of business). I still can’t say if it was the manual therapy or getting my drug combination right or experiencing a mini-remission, but Tenzin and I finally felt like I was “okay” enough for us to start a family. For some bizarre reason, I seemed to get better when I was pregnant. And then, we got hit again.

I say “we” because Tenzin has been stuck with this entire mess for as long as I have. And while it sucks being in pain all the time, it’s no picnic living with someone who’s in pain all the time (I can only imagine how many times I’d want to say, “Really? Still? Can’t we talk about something else?” if I were in his shoes). Anyway, while I was pregnant with Newt, I started feeling this weird burning sensation, like I’d stuck Vick’s Vapor Rub up my nose. While doing some research, we came across a crazy syndrome called “trigeminal neuralgia.” It’s called the “suicide disease” because people who have it like to jump off the Empire State Building. But me with two chronic pain conditions? That’s just coo coo.

When the neurologist told us the diagnosis, we started laughing. I think he thought we were a little “off.”

I actually ended up with abnormal facial pain, which is a lot better than trigeminal neuralgia. The former just gives you a constant burning pain, while the latter can actually take a person down with lightening like shocks that come out of nowhere. So I’m really quite lucky. Of course, with this new diagnosis, we started down the road of fixes once again. The highlight was getting stuck with needles between the vertebrae in my neck (sadly, I was not asleep at the time).

The upside was that I ended up on an anti-seizure medication that serendipitously helped the fibromyalgia (Zonegran, if you’re interested). The downside is that now I can’t drink alcohol without feeling like complete crap. And anyone who has kids knows how important it is to be able to have a drink at least once in a while. So you can see the problem.

I can’t even begin to count the number of doctors and miscellaneous “healing” people I’ve been to over the past 16 years. But I do know that 95 percent of them have been adamantly confident that their brand of voodoo would be the thing to fix me. Which leads me to today. Eight months ago, I fell for it again. I spent hours and hours hooked up to electrodes in the neuro-muscular dentist’s chair and lived for months with a piece of plastic in my mouth that made it impossible to chew gum. And after months of being a trooper, I’m throwing in the towel.

Because that’s how this goes. We give something the old college try, hope we haven’t fallen for a snake oil salesman, and generally fail miserably. And every time, we say this is the last time.

So in answer to the question about being 20 again, I think I’ll pass. Things aren’t perfect, but I don’t relish the idea of reliving a time when I basically had to mourn the loss of no longer being the person I thought I was supposed to be. When on most days, the pain seemed to be winning. And when, for the most part, I didn’t have a very good reason to get up in the morning (right now I have at least four).

But other than that, it might be nice to go back and have firmer skin.