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If My Life With CRPS Were a Skit From 'The Muppet Show'

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If my life were a skit from “The Muppet Show” it would definitely be the one where Kermit the Frog is reporting news from a different planet.

This is Kermit the Frog reporting from Planet Koozebane. Water found on the moon [a long hose from the moon connects to a sprinkler on Koozebane but it is so far away only single drop reaches the planet]. In other news, humans have spent millions of dollars and countless man hours in pursuit of alien life forms. Why didn’t they just look her up in the white pages? *[insert photo of me wearing earmuffs at the pool]

Kermit’s report of an alien wearing earmuffs at the pool is a true story, though I am technically not an alien. I am a human — a mother, wife, daughter, sister, friend — but some of the things I have to do to cope with my disabling condition makes me look odd. I have complex regional pain syndrome, a rare and painful neurological disorder that affects my upper extremities, ear, and face.

In the summertime, I have to choose between the pain of the cool air on my skin and the pain of covering the affected areas. I wear earmuffs, headbands, and arm wraps in the house because a single draft of cool air from the compressor can be excruciating. If I go grocery shopping, I have to stay away from the open coolers of meat, dairy, and frozen foods. When I go to the doctor’s office, I have to move my chair so it is not under the air conditioning vent and pray he is running on time so I can get out of there quickly. When I’m visiting friends and family, I have to ask them to turn off their ceiling fans and close the windows. When I’m riding in a car I close my vent, but the air deflecting off the driver is unnerving and feels like my skin has been filleted and stuffed with dry ice.

I am no longer able to work, but when I was still working I was in the process of obtaining a permission to use a service animal to help me cope with the debilitating arm and facial pain. The idea was to use the service animal to would provide a source of warmth (the animal’s body temperature remains stable at 101-102.5 degrees) and the sensation of its fur to help desensitize the painful areas. At the risk of looking like a pirate with a parrot perched on my shoulder, I was willing to try anything to make it possible for me to continue working.

service animal lays on woman's face

With the earmuffs, arm wraps, unwashed hair, and an animal laying against my face, I realize I sometimes look like I am from another planet. I can easily imagine that Kermit could find many interesting observations in the ways we, each of us, cope with our health issues. On Planet Koozebane, there are a lot of unusual specimens with remarkable traits and behaviors. There will always be people who look at our situations and form opinions about what we do and why. We can’t change that, nor should we spend the time and energy to try. As they say in biz, the show must go on!

“It’s time to play the music. It’s time to light the lights. It’s time to meet the Muppets on the Muppet Show tonight.”

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Originally published: May 18, 2017
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