I've been on a long, winding, exhausting, and emotional medical journey. After 20 years, of countless doctors and tests, I was diagnosed with with a connective tissue disorder called hEDS (hypermobile Ehlers-Danlos Syndrome). Along for the ride have come a few other conditions. Most notably, I was also diagnosed with dysautonomia and mast cell activation syndrome. Most of my life was spent in and out of doctor offices. During that time I learned much, and forgotten more.
I'm frustrated with my past treatments and medical care. Some experiences were with caring doctors who didn't have the knowledge yet to help me. Some within the medical system didn't have enough time to actually care. I sometimes wonder how life might have been different if I knew earlier on what was wrong with me.
Currently, I'm in the middle of finishing edits on a book I'm writing that details how I was able to find answers for all my medical mysteries. I wrote about how my life improved after receiving a diagnosis. I would like my blog to pick up
where my book left off.
I have upcoming medical appointments with some amazing practitioners. I am one of the fortunate ones. I am grateful to be able to experience new technology, diagnosis processes,
therapies, and experimental treatments for my various conditions.
I will document my journey on this next
chapter in my life. Remember, I'm not a medical professional. Don't take what I say as truth. Always consult with your doctors. My purpose is to document my
experiences. I will also try to create more presence and drive awareness of
these medical conditions to bring them to the forefront.
My goal is for us
"zebras" to lose our stripes and be able to enjoy insurance covered treatments, ensure that doctors can detect and diagnose these conditions earlier on, and professional such
as anesthesiologists can better ensure our safety during medical procedures.
Remember, just because we are rare, doesn't mean we don't exist.
With Care,
E.A. Scott
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