This is the short introduction. Really.
It’s been impressed on me that I need to keep better track of the pain I experience, where, when, how often, etc. I’ve also been told that some people find knowing about it validating. “That’s my pain!” makes us feel less isolated. It’s not all in my head after all! It really is as bad as it feels! I’m not a wimp! I’m not making it up to get attention!
I don’t like talking to people about myself. I really don’t like talking to my doctors about myself. This makes it extremely difficult to get to the bottom of things. This blog is intended to be anonymous to everyone but me and my doctor. I actually intend to tell my doctor about it. That way maybe I won’t have to actually SAY any of it. Or remember it, because I go blank as soon as I see the white coat, and then I scrabble around looking for something to say, and then I pipe up with something, and eventually I talk out two or three of the ten things I wanted to mention, though often not the most important one. Then I leave and decide I can probably live with it a while longer.
I’d never heard of fibromyalgia before I went to my doctor after the birth of my youngest. He said there was nothing wrong, exactly. “Then why do I hurt all the time?” I exclaimed.
(He was good at getting me to exclaim. Mostly by springing things on me, like the day he twisted my wrist to see how bad my carpal tunnel was and I ended up on my knees screaming “SHIT!” I’m pretty sure he had to dodge a kick as I went down. I was very glad when we changed insurance companies and I was able to get a new doctor. I hate screaming profanity in the doctor’s office. I don’t mind the kicking as much. He was pretty spry.)
He pinched my elbow. “Does that hurt?”
“Ow! yeah.” I hadn’t even realized. “Yeah, it does.”
He was already convinced, but decided to poke a few other pressure points (you have to have pain in at least 13 of 18 major pressure points to be diagnosed) to convince me. He found all 18, and so did I.
He gave me a generic arthritis medicine and told me to get more sleep.
The next doctor gave me Pamelor because I must be depressed and it was supposed to help with pain symptoms. Well, you know, not sleeping well, in pain all the time, kinda, I suppose. I agreed to try it.
4 weeks later I threw it away and told her she wasn’t coming near me with an AD again. I was in a rage all the time and a little afraid I’d throw one of my little darlings through a wall the next time they screeched too loud.
We went back to just the athritis medicine. It gave me vicious heartburn. She added an antacid.
The rheumatologist she sent me to told me it was PTSD. He sat all the way across the largest examination room I’ve ever been in, leaned back in his chair, and told me to go find a psychiatrist. I could shake his hand without wincing and fibromyalgia was most often triggered by PTSD in people who were already predisposed.
Were you ever raped?
Yes, more than 15 years and another lifetime ago.
There you go; though you really ought to be crying. If a trauma isn’t effectively dealt with, the sufferer often cries when talking about it.
Good to know. I’ll squeeze some out next time.
We changed insurance.
I got to go back to the same practice I’d visited before the pregnancies and the pain made me lose a full-time job with my own insurance. The practice had added a brand new (graduated the month before I started there, I think) doctor. She is awesome.
She put me on Wellbutrin, Celebrex, Prilosec and Flexoril. When that seemed to make it possible for me to do the grocery shopping on a regular basis and play with my children for a half hour at a time, we added Cymbalta.
It made me hate myself. I became suicidal. I cut it cold-turkey, but didn’t go to the doctor because I didn’t want her to be mad at me. I didn’t know that cold-turkey is one of the worst ways to quit Cymbalta. I didn’t realize that my thinking was clouded and the doctor was the first place I should have gone. For the next month I was a complete wreck. I convinced myself that everyone who professed to love me did it because I was so pitiful and disgusting that it made them feel better, as if they’d done something to fix me. I attended a conference during that period. I’m still trying to get over having ducked people I should have spoken to and that feeling, that knowing, that they were absolutely horrified by the thing in their midst.
I haven’t quite been able to shake that definition.
We moved over an hour away from my doctor. She asked me to go to a psychiatrist, a dermatologist for my pesky psoriasis, and a rheumatologist. I tried the psychiatrist route twice. I discovered that my horror of authority leads me to be a brilliant–and absolutely false– patient. I tell them what they want to know. I chuckle over my foibles. I shed a couple of tears over a sad event, I forgive my parent, I forgive my rapist, I laugh ruefully over the antics of my wonderful children and beam at how wonderful my husband is (who really is, but that’s kind of beside the point). And when I leave I get so sick I can’t drive for 15 or 20 minutes, until I get over the shakes. And then I can’t go back. I. Can’t. Go. Back.
It took me two tries to realize what was happening, with two different therapists (since I couldn’t go back to the first one, even if we hadn’t changed insurance), before I realized that I couldn’t do it again.
My doctor doesn’t think I have an anxiety disorder.
I like going to the grocery store. It’s neatly laid out. I can buy food which soothes my “ohmigod we’re going to starve” anxiety. Whenever I get anxious, the pantry gets so full I have a hard time figuring out where to put the food. As well, when I’m in the grocery store I can visit with people. I can help little old ladies get cans off the top shelf. I can joke with the cashiers. I can smile at small children in neighboring carts. And then I can get away.
Anywhere else? I don’t want to go. I don’t want to be there. I chat and scintillate and charm. And then I leave and am sick for two days.
I think I have an anxiety disorder.
I should see a psychiatrist about that.
The dermatologist is awesome. He realized that the pain in my hands, feet and spine, combined with the psoriasis probably meant psoriatic arthritis. Ladies and gentlemen, after a couple of tests we discovered that we had a winner!
He put me on Remicade. Remicade costs about $14k a treatment, every 8 weeks. My insurance company hated me. It helped a lot until it stopped working.
We’ve changed insurance again. I’m on Humira now. I give myself a shot every two weeks. It’s much less expensive, only $1,500 a month. You really don’t want to know the copay.
During the course of changing over the insurance, I went without my Wellbutrin for 15 days because no one knew how to get it approved. It’s now been almost a month. I’ve decided to visit the doctor before starting it again. I’ve had migraines every week now instead of every six months, and my husband says my moods are more extreme (I can rarely tell), but I’m sometimes happier and I don’t feel less like me. I’ve gone back to deciding my parents always hated me though.
Okay, that was a joke.
I always thought they did, and then I went on Wellbutrin and realized they never did. It was such a golden moment of joy. Now… I realize that, whether they do or not, we’ll never agree on most things they find of burning importance and they have little respect for me, and they believe that diseases come to people who have “invited” them, ergo, I’ve done something to invite this. Really, do I need that much love?
Welcome. The line of people who blame me for this starts right here, behind me.
Obviously this blog is about more than pain. Pain never stands alone. Pain brings its friends: depression, anxiety, fear, anger, self-hatred, disgust, and probably a few more I haven’t caught in the spotlight yet. Then they have a party on your bones. They invite your relatives.
Thankfully, so thankfully, my husband and children have burnt the invitations. My friends, I’m pretty sure, despite the ugly voices, are using them for spitwads.
And, despite how all this sounds, I’m hopeful. I am very blessed to be able to do freelance work for clients who accept that something isn’t going to get done today because it’s a high pain day or I really have to take a nap first. Of course, they’re often the first recipients of the insomnia, since I can’t sit still when I’m awake unless my brain is working as fast as it can. It seems to balance out well enough and they’re patient with me. They’re good people.
This world is pretty full of good people. If you’ve read this far, you’re likely one of them.
Welcome to my world.
