Monday, March 13, 2017

Why do you use that? That being my wheelchair...

I've had several people ask me why I use a wheelchair, and I've learned to have a great comeback for that...

I'm an overachiever!

Seriously, though...why do I use a wheelchair, when I can walk...albeit a little bit.  The answer is: 

I'm an overachiever!

or  My body doesn't like me...

So, the first thing is Reflex Sympathetic Dystrophy, otherwise known as Complex Regional Pain Syndrome.  This is the most painful disease known to medicine.  On a daily basis, I live with pain around a 7 out of 10.  For 20 years, I fought this disease.  For 20 years, I lived with the pain, sometimes so bad I would be crying.  It all came down to "how bad do I want to hurt while walking?" and what happened during a football game in Dallas.  The ex and I went to a game, and he didn't want to pay the $50 that I usually pay for parking.  There's a perfectly good parking lot 5 minutes from the stadium...he didn't realize it was the very outer edges of the furthest parking lot of the stadium.  
So, I sucked it up and walked...by then I was using crutches.  During the game he had me going to get the drinks and snacks.  After the game, it was time to go back to the car...by this time I was in so much pain I could barely walk.  So, what should have taken 15 minutes took me over 45 minutes...and it was 9/10 of a mile.  He still couldn't understand why I was in tears by the time I got to the car.  

When I went to my doctor to see if there was stronger pain killers or something, he suggested it was time for a wheelchair.  So, I agreed.  Using the chair helped with the pain....A LOT!! 

But, the ex didn't believe that I needed the wheelchair.  So, on March 17, 2016 we got into an argument about me using the wheelchair.  He was saying I didn't need it, I was saying I didn't want to be around him.  It ended with him assaulting me, and throwing me out of my wheelchair.  When that happened, I had abrasions on my arms and knees, but my back was also hurting...I chalked it up to me overreacting to the assault.

Then...my back pain kept getting worse.  Now, I've been living with back pain for 9 years because (and here's more of the overachiever part) I have Syringomyelia, or a syrinx in my spinal cord.  It hurts, but has always taken a back burner to the RSD.  

Then I went to the doctor, and he noticed my foot spasming and asked me how long that has been happening...I told him since I was assaulted.  He immediately sent me for an MRI.

When I got the results of the MRI, and went to the doctor, I told him I was in tears that morning because of the pain...getting out of bed is always the worst.  He looked at the results of the MRI and shook his head, and said to himself "I don't understand why you're not in excruciating pain."  (Keep in mind I've been dealing with RSD for 20 years, and have a VERY HIGH tolerance to pain.) He then did a couple of reflex tests, which were amusing because there was very very little movement if at all...and shook his head again.  Then, his eyes got wide, and he looked at me and said, "You are in excruciating pain" it's just that you're so used to the pain that you can deal with it a little better.  So, it has been verified...my ex gave me an incomplete SCI when he assaulted me.  This was clearly evidenced last week when I accidently had boiling water splashed on my foot.  I felt the water hit, but no pain.  We got my brace and sock off immediately, and I poured cold water on my foot because I knew...even though I didn't feel any pain, my body was feeling it.  My poor foot immediately went into spasms and my leg started cramping...for the first time since this whole ride began, my calf was actually cramping...before this it's always been my thigh...so yeah I was freaking out a bit.  

The verdict?  A second degree scald on the top of my foot...No, it never hurt, but I've been really careful with it.  

So why do I use that thing?  (Again, it's a wheelchair, and it's OK to ask) 
Again, I joke about it...tell people I'm really lazy, that I argue with stairs, and that walking is overrated.  Take your pick.  I'm an overachiever, even in rare diseases I overachieve....I can't have just one.  Yes, it's ok to ask me anything, and I will answer.  And, no I'm not the best using a wheelchair, but I can balance like you wouldn't believe.  

I don't let it stop me...I participate in Amtgard and go camping...it's hard, and I use my crutches a lot.  I've even gotten brave and walked without my crutches...just as long as I have my braces on.  I've incorporated my braces into my garb...and the people at my park do try to be careful with me when I do decide to participate in the games...though it's rare.  

So, if you see me walking, know that it does hurt me...A LOT...and that I'm fighting through the pain.  I refuse to let my disease identify and limit me, and I TRY REALLY HARD to do everything that I used to do.  

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