By Cynthia Toussaint
Yesterday, I raged… and raged. Some days I’ve had enough of this damn disease.
Five years ago, a rheumatologist told me that because my right arm and leg were in contractures, all my limbs were going to fold up - and I’d live out my days confined to bed. Even though I’ve learned over my 34 years of high-impact pain that doctors who catastrophize are usually wrong, a part of me panicked.
I took my grim prognosis to a physical therapist, Lana, who had helped me with pelvic pain years before. After someone puts their fingers up your privates for many months, one builds trust. Wrong!
Lana said, “I don’t know what’s going to happen to your limbs, but I’m going to start straightening out your arm now.” Every fiber of my being said no, because with CRPS there’s way too much risk. My motto is: If it ain’t broke, don’t fix it.
I explained to Lana that I was basking in my first in 27 year partial CRPS remission. Though my arm was severely bent, I’d adapted – and was enjoying unlimited swimming, ballet-pilates, piano playing, writing, typing. Heck, I was even doing handstands and throwing a football.
I finally agreed to let Lana work on the back of my head and shoulders as she thought this would help release the contracture. But before long, she started stretching my arm – and I screamed bloody murder when something snapped. It was terrifying to see the fear in Lana’s eyes, almost as terrifying as my new level 10 pain – a pain Lana labeled a muscle spasm before releasing me.
I knew better. I knew my remission was gone.
After a year of never letting up,” I-wanna-die excruciating pain”, a top elbow surgeon took an x-ray that revealed the culprit. Lana had broken my arm at the elbow. It had healed incorrectly and I had floating bone chips. A doctor explained that I’d never be able to use my right arm again without surgery.
As we all know, CRPS and surgery aren’t dance partners. So I held off. Eventually I got myself into the pool again. For a year, I did deep-water exercises and one-arm laps. My pain finally eased to the point I could swim like before…thank God.
Still holding off on writing, typing, etc., I moved to my great-love, piano. Like swimming, I (hopefully!) expected it to take a year. I started by just looking at the keys for a few minutes every day. Eventually I placed my hands on them, then played with my left. Two-handed recognizable Bach and Beethoven slowly emerged, ten seconds a day, then 20.
After nearly a year of this musical recovery, I was up to 15 minutes. I was on the verge of playing more difficult music that fed my soul with visions of Pachelbel and Joplin dancing in my head.
Then one day, I forgot to set my timer. Lost in the joy of Joy, I played a minute or so over what I’d worked up to. The last chord sent a hot-poker through my elbow, and I was scared to death. Though I quickly reverted to my “everything’s gonna be OK” mindset, I lost the battle. By nightfall, I was writhing on the couch. At best, I’d lost all the activity I’d worked years to regain. At worst, I’d re-fractured my elbow.
Today, a month later, this CRPS flare is slowly ebbing. So no fracture, but still I’m pissed off. Why so much agony for a tiny misstep? Why does this disease punish so unforgivingly? It’s maddening. No, it’s enraging.
So yesterday, I raged against it. With my left “good” arm, I threw furniture, I threw speakers, I threw the monitor. I screamed like a banshee. I had a good ol’ fashioned meltdown of epic proportions. I was not at my most graceful.
This morning I woke with two bad arms. I mean, seriously, how do you win with this god-awful disease? On bad days, I let myself think that maybe, just maybe, you don’t. Maybe CRPS is a stacked deck - and the poor souls who live with it and the healthcare providers who think they understand it’s ever-gyrating nonsense are doomed to be fooled.
Alright, you sonofabitch, deal me another hand tomorrow. There’s gotta be an ace in there somewhere.
Cynthia Toussaint is founder of For Grace, a non-profit that educates and advocates on the issue of Women in Pain. She lives in Los Angeles and is a frequent contributor to the National Pain Report.