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Why I Dyed My Hair Purple This Month

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For most of my 11 years as a chronically ill person, it was easy to miss me.

My story starts, as so many complex regional pain syndrome (CRPS) stories do, with a little arthroscopic surgery to fix a dislocating patella. I woke up to searing, burning, constant pain, a wound that wouldn’t close, and an inability to move my swollen leg from the knee down. I’m not going to go into the horrors of desensitizing my leg and learning to walk on it again. I will sum it up by saying it was months of hell that I wouldn’t wish on anyone.

And I, like anyone with a chronic illness who reaches a good plateau, thought I was through. I could walk, though sometimes I needed a cane. I resumed riding my horse, although the tall boots were painful enough to skip eating until they came off. My leg progressed to a “cold presentation” and spasming became more of a problem than the edema. I went back to work as an art teacher.

“I am going to conquer this,” I whispered to myself.

CRPS is a big, giant enigma. The best minds in medicine are beginning to wonder whether it is an autoimmune neuro-inflammatory disorder. It is known to progress, though not always. There are no medicines that treat the underlying unknown disease, just the symptoms. There is no cure. For me, lumbar sympathetic blocks helped my left leg, but not my pelvic or right leg problems. Stellate ganglion blocks helped my hand and arm. They don’t work for everyone, and no one knows why.

In the past six years, my body began a snowball of changes. I became asthmatic, developed digestive problems, cardiac symptoms, and insomnia. Then there was fibromyalgia, making it difficult to lay down, and coccydynia, making it painful to sit up. There were weird rashes and a new case of CRPS in my right arm and hand. I developed allergies to medicines, pets, and most of nature it seemed.

Slowly I stopped riding.

Slowly I stopped shopping.

Slowly I stopped cooking, cleaning, or entertaining.

I even stopped driving myself if I could help it.

My cane became two canes. My insurance wouldn’t approve my blocks. To get through the school year, I broke down and ordered a metallic purple walker. Over the summer, I underwent spinal cord Implant surgery. The electrodes allow my spinal cord to ignore some of the pain signals.

Now, I can walk more without the walker. There are hidden aspects of this bionic miracle, though. I have to hook myself up to a recharger for a few hours once a week. I still have edema and color changes and spasms. I can’t tolerate the sensations all day, so I “turn myself off” after work.

In short, though I “look better,” I still have CRPS.

So in honor of Invisible Illness Week and Pain Awareness month, I’m making a statement: I’m still fighting, and I refuse to be invisible.

That’s why you’ll see me with purple hair.

Originally published: September 29, 2016
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