There is a misconception that when you are paralyzed, you don’t have pain. Here’s the honest truth.
When I was discharged from rehab at Region’s after two months, I still didn’t have complete feeling above my injury in my back or the back of my head. I started to worry because I had already lost all feeling from the sternum down, now will I not feel my back and the back of my head too?
Over the next 10 months, the feeling slowly came back…and all of a sudden, I’m feeling pain. The first spark of pain started along my chest and up and down my arms. I could only explain it as having a severe sun burn to the point where you don’t want to wear clothes. My Dr started out by giving me prescribed topical cream. It did not work, so we tried a different brand of topical cream. That didn’t work either. Eventually, the pain started to go away as I started to exercise more at physical therapy, so I felt good with finding the solution. That lasted a short period of time.
Then came the burning pain under my shoulder blades. I could have swore I developed some sort of pressure sore under my shoulder blade. I was still learning about all of this. I couldn’t develop pressure sores behind my shoulders because the shoulder blades protect the muscles. What was this pain then? I learned that the pain was from me slouching forward throughout the day and it was muscle fatigue. Why did I not experience this pain before my paralysis? I started doing exercises where I would squeeze my shoulders back throughout the day, and that helped, for a period of time.
Pain continued developing in all sorts of places.
The muscles in my back would tighten up so much that I insisted something was wrong and a CT showed everything was intact.
The back of my head started to hurt that it made sleeping on my back impossible. I would have to sleep on my side and wake David up multiple times to turn me from one side to the other.
One day I woke up and my hands were swollen and it hurt to spread my fingers. Where did that pain come from?
My under arms, pits and the side of my breasts started to hurt. The shooting pain in my breasts occurred nightly…and then daily. Then I learned it was caused from me not moving my arms enough throughout the day. Who would ever think of this type of pain caused from not moving my arms?
The pain then showed up daily.
Daily, it feels like my spine is protruding out and when I first go to lay in my bed, it’s excruciating pain until my back can relax enough to lay flat. I’m not getting wrinkles from old age; I am getting them from the face I make when I’m in pain.
Daily, the sensitivity across my chest and down my arms were consistent enough that I could only wear one type of material, think of a fuzzy teddy bear. I ordered multiple “fuzzies”, I call them, because I wore them every day, all day. Even when I slept at night, I could not have the sheets touch my chest or arms because it hurt so bad, so I have to drape a fuzzy across my chest every night. Last week, the pain was debilitating but I still needed to work. We positioned my laptop where I could type and not have to move my arms. If you learned above, not using my arms results in arm pit and side of my breast pain. To help pain, another pain is created
Daily, my butt cheeks burn because I’m sitting on them all day. I try and relieve the pressure by leaning back in my chair, but sometimes I get so busy that I forget to lean back.
Many nights, I go to get into bed, and I can’t side transfer because my spine feels like it is protruding (it’s really muscle tightness), my butt cheeks burn (which you could say it’s good that I’m feeling it, because I’m not supposed to feel anything, yet it’s bad that I can feel pain) and I have pain in my arm pits and the sides of my breasts. When I finally get into bed, I lay down and my back is so tight it takes minutes to relax, my butt cheeks hurt with no relief and the back of my head hurts.
I have pain pills. I’m prescribed to take them daily. I should take them daily because I do need them. For some reason I don’t take them. I don’t know if it’s because physical pain sometimes feels better than the mental pain, I go through daily?
I share all of this not to complain, not to ask for prayers, not to have people feel bad for me…but instead to help educate that people who are paralyzed do feel pain. All of this is new to me and doesn’t make sense. Isn’t losing feeling from my sternum down enough? Haven’t I endured a lifetime of struggles in the past 16 months? What is going to be next? What will I lose next? This is why I started to read the book of Job. Job and I have a lot in common.
Pain is inevitable. It comes in all forms. Complaining, crying, screaming doesn’t help. Accepting is all I can do.
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Medical Update:
I will be getting a reconstruction of the Monti channel I had done last December. Surgery is September 23rd and should take up to 9 hours. I will be in the hospital for a week. I feel good with this urologist and feel confident that he will make things right for me.
I just found out last week that I don’t need back surgery. I was able to track down my original neurologist who performed my surgery after my accident. I was told she moved out east, so when I went to look where she ended up, I was happy to find out she ended up at the Mayo in Eau Clair. During the consult, we covered the three issues I was told of. I was fused at a 30 degree angle and was hopeful to get this fixed. My neurologist viewed my recent films and my body is naturally healing the curve and I’m at about 22 degrees now. The bone spur that was pressing on my spinal cord, my neurologist reassured me she removed that bone spur when I had my accident. Lastly was the loose screw. My neurologist said the screw is at the bottom of my fusion, not the critical area. If I wanted to fix this, they would need to fuse me slightly below the middle of my back and this would reduce the limited flexibility I have. She is not worried about the screw coming out. This is good news.
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