Originally written on 5/2/15
I’ve always had pain.
For as long as I can remember, I would wake up crying with leg aches, go home with stomach aches, and have episodes of severe light and sound sensitivity (which I later learned were migraines) that made me curl up in my closet or the bathroom, the only lightless rooms in the house. I learned to be ashamed of my pain because it inconvenienced others. I learned to shut out a good portion of it because it was the only way I could function.
In my teenage years I wasn’t exactly careful with my body, so I’m sure I did some harm, but who can say they didn’t? I traveled and rode motorcycles on bumpy roads and went sledding and snowboarding and was in car wrecks (not me driving) and all sorts of things that probably made my body issues worse.
I’m in my 30s now, and it’s gotten worse and worse. I take anti-seizure medication and pain medication and use a tens unit and get massages and use a traction machine. None of it is enough anymore. Almost every day, I make half-hearted plans and know that if I’m lucky I can accomplish some fraction of what I want to get done. Sometimes I lose a whole day to the pain, and sometimes just part of a day.
My husband is wonderful. About everything. About the fact that he takes on well over half of the work we should be sharing. About my inability to be physically intimate most of the time because if I stop ignoring my body for two seconds I will feel all of the pain that I’ve worked so hard to shut away. I can’t stand it, and I tell him that he deserves a whole wife… not someone like me (who feels like half of a wife on my best days), someone better. He says there is no one better.
This year we got insurance (thanks, Obama).
I got an MRI for the first time, and the report I got back was complicated and indecipherable. Arthritis, degenerated disks, herniated disks… all were present and accounted for. My pain management specialist (which is apparently a thing) said to ignore everything but the bulging disk in my neck for now. That was the biggest problem. He showed me a model that looked like this:
That’s what’s causing most of the pain in my neck, shoulders, head, arms, and even my hips, legs, and feet. Isn’t that crazy?
Also, my body—which has proven to be grossly unhelpful—has developed a bunch of myofascial pain over the years. When you have a problem, your body tries to compensate and stabilize and basically does a bunch of shit that only makes the symptoms worse, kind of like allergies.
So now I’m getting trigger point injections for the myofascial shit, and I’m trying to get permission from my insurance company to get the treatment I really need. Want to know what it is? Are you ready for this?
I’m getting Botox shot into my muscles so my nerves stop freaking out. For real… Botox.
The fucked up part is that I have to just keep suffering until Group Health gets its shit together. Here I am having had migraines and pain for years, and the insurance company wants me to jump through a bunch of hoops before I can get the treatment that might make me feel human again.
The stupidest thing about the whole situation is that it would cost Group Health a tiny fraction of what they’re paying now to just give me the fucking treatment. Instead, they’re paying for me to see three different doctors (dumb) who all say the same thing anyway (dumb!) and give me little treatments that help for maybe a day or two if I’m lucky (DUMB!). It doesn’t make a bit of sense.
Oh, I’m also waiting for them to approve a different seizure medication that will do what my current seizure meds do, but better, and without as many side effects. I’m on month three of waiting for that to happen.
So that’s what’s up. If you see me around with a tens unit strapped to my neck, or standing up and stretching every few minutes, or with earplugs in, or leaving functions early, now you know why.
I feel like I should end this tirade my saying that I’m okay. I’ll get through it. Some days I don’t feel that way, but mostly I have hope that things WILL get better.