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|WOOPIE the results from my alien are in but eh …………………..|
|How did I get from being happy that my alien is not cancer to having a 4th creepy disease!!! Seriously 2,5 weeks ago I was thrilled to hear my surgeon managed to get my huge benign alien out, including lots of bad scar tissue attached to my intestines, AND all through small incisions to make my recovery as speedy as possible. Food started to go down again. I could eat and feel it sinking through my belly. What a relief that there´s no more alien blocking the passage to the exit like a toll booth with a too steep fee. No more medication to make digesting food somewhat possible. |
This week I had a checkup appointment. I´m doing so well I can skip the last post-surgery checkup in another 4 weeks’ time …. if I don´t feel like going. "Oh by the way, you will need to take precautions because it can come back. You have been badly sick from it for a long time. This is a disease and it´s better to be safe than sorry". HUH? I will need to pump more chemical stuff into my body to prevent another alien growing in my belly again? THUD!! After double-checking some more questions with my home physician the news didn´t get better. Apparently the purpose of this disease is not to give me more possibly fatal issues to live with, God knows I have enough of those, but to give me more pain. As in a belly ache that will stay with me for the rest of my life. I collect autographs, I was definitely not planning on collecting nasty diseases!
I’d better work on my book of memories. It has autographed photos of the actors I’ve met and to me it has become a way to deal with the pain attacks. Every photo is a story, a trip I’ve taken, people I’ve met, most importantly a tool to focus on something else as my pain. It has been too long since it has gotten a new addition after the Gerard Butler disaster. I badly need another adventure, another story, another twinkle in my eyes.
|What is generalized dystonia? A neurological movement disorder with involuntary muscle contractions|
What is generalized dystonia TO ME? Excruciating pain!!
Oh my God! That’s what my surgeon thought when she finally came face to face with my 3 headed alien. The surgery was very challenging, as she put it, because of lots of scar tissue that had to all be removed. SURPRISE the alien has apparently been with me for many years. It was only due to a second surgeon being present that she could stick to her original plan of less invasive surgery. To get to the sucker she had to cut through my belly muscles and she wanted to do that as little as possible. The mass was of different tissue as she had initially thought but that immediately meant NO CANCER! Whhheeeeeeeeeeeeeeeee …………..
Although my dystonia is generalized and can occur anywhere in my body it’s my spine and its muscles that I fear the most. My muscles are not normally spastic, like they are with many of my fellow inmates. They usually become spastic with movement. When I walk there’s a limit to the amount of normal steps I can take. As I focus on putting one step in front of the other I become painfully aware of my Donald Duck butt. Painfully because the emotionless clinical description of generalized dystonia doesn’t mention violently and extremely painful. The more steps I take the more violently the muscles in my lower back and butt contract until I can no longer consciously fight against it and Donald Duck pops back out. Then a wave of spasms travel through the highway that is my spine . My shoulder muscles bulk up to become Queen Leonidas flopping uncontrollably contorting my arms into painful unhuman positions to match my Donald Duck butt.
It’s what’s happening lying in my hospital bed. There’s no movement due to the surgery, which is the issue. I’m not rolling around in my bed to keep my muscles from becoming spastic. My spine muscles have started fighting the mattress, started WW III trying to push the mattress away. The very painful spastic paralysis increases as time goes on and the only relieve is regularly changing my position, which I’m incapable of doing. Eight hours after my surgery I’m begging to get out of bed to stop the excruciating pain. As I no longer have control over certain movements, due to the dystonia paralysis, the nurse has to hang my legs outside the bed and help me up. My cut belly muscles make it an extra struggle until I finally sit upright. I try to squeeze out a few steps but I know I can’t stay up for long.
Every time I need to get more bed rest as usual it goes wrong. Lying down is a nightmare. Sitting I can only bare for so long until I’m forced to lie down again. It takes a few days for my belly to heal enough for me to be able to sleep on my sides and turn over in bed again. Every night complete agony waking up after only a few hours of sleep with a frozen spine. Struggling through the extreme pain to get the paralysis lessened enough to change position and try to catch a little more sleep. We make my bed again and again in an effort to help lessen the spasms. My trick is making the bed as soft as possible so my spine muscles have less to fight against. There are 4 soft blankets and duvets folded quadruple on top of the mattress. Ever read the story of the princess and the pea by Hans Christian Andersen? To test if she’s a true princess they make her sleep on 20 mattresses with a hidden pea underneath them. When she can’t sleep because of it this proves she’s royalty. The princess must have had dystonia or I’m royalty and don’t know it. I’m through the worst of it now although I still need some extra sleep for my body to recover.
Would I post a photo? No I wouldn’t. Although I take the bad periods with a humorous outlook I feel it’s too private. During a specifically facial spasm period I’ve taken photos of myself and send them to friends who choose to stand by my side ….. but not before adding a Popeye hat and pipe. Not to ridicule myself but to help my friends see the humor of it. The last thing I want is to be pitied out of disgust or realization of the pain I’m in. Pity me and I only feel worse but laugh with me and I can get through it. If you want to see images or video of dystonia feel free to Google for it. It suffices for me to say I’ve had up to 40+ attacks a day where body parts violently, suddenly and quickly contort into positions the body parts are often not supposed to make.
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