I wish I found this group much earlier in my journey. I felt alone and in disbelief that it was possible to not know what causes something so dramatic and damaging to our bodies (and minds). I go through times when I think mean things: like neurologists must be the lowest in their medical class to graduate, lazy, choosing this field because they can easily check the “idiopathic “ box, push pills, and move to the next patient quickly. But I realize more now that it’s my anger of the situation influencing some of my ill thoughts.
We need our medical folks in a partnership with us in order to help. That’s what I am currently missing from mine. Like a lot of us here, I need compassion, I need a coach. I need a doctor who can feel my sadness of waking up weak one morning, and within 2 weeks hospitalized and starting life over in a wheelchair, like a newborn, no longer able to walk, run, bike, swim, or go to the bathroom by myself and wipe my own rear end. (I thank God for getting me to physical therapy where I can do that last thing now!) if you were in an auto accident, they’d have compassion, but since they have no clue what’s wrong, and in my opinion don’t look hard to find the cause, I feel ignored, or quickly expected to toughen up and live with the unknown. I was LIVING and doing my part to stay healthy- I was never one to knowingly do bad things to my body and expect doctors to fix things I was doing to destroy my health! I am a hard worker and will partner with them to make me better!
This group has taught me more compassion to our doctors despite my hurt. Maybe they’re as angry as we are. I strongly suspect insurance companies hold their treatment of us back, as if they won’t pay for much “exploratory “ tests unless there’s a 99% chance they’ll find something. While I’m trying to soften up and get better teamwork with me from my doctors, I admit I lay awake at night fantasizing that there’s something simple in my body causing this that can easily be fixed. Maybe a tiny little cyst on the spine somewhere, maybe a very strange vitamin deficiency of some sort, maybe one of the thousands of mosquito bites I’ve had in my life was really bad….. while I dream, I’m going to keep praying to the big Doctor above that one day we are all guided to answers to our mysteries.

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