A subclinical life

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I suffered my entire life with issues and signs of Hypermobile type Ehlers-Danlos Syndrome, including extreme flexbility as a child that I "grew out of" in my young adulthood, slowlyl stiffening with age and early onset arthritis. Like too many, doctors focused on my (very real) primary organic depression, but ignored my pain complaints and dismissed my mild to severe anaphylaxis and allergies.

Fast forward to early 2012 when I suddenly went from walking to wheelchair in just 3 weeks with a strange unexpected onset "cascade" or "storm" of EDS onset. (I split my R SI joint, subluxed my R leg, fingers ribs and toes before it was "over" - yes, very painful!). I finally got diagnosed by a geneticist at 45 after ruling out two of the more rare forms: Vascular and Kyphoscoliotic with blood tests based on personal and family medical history. This left me with the "catch all" bin diagnosis of Hypermobile EDS as our best fit. (They are still trying to find the markers behind HEDS as I type this in 2016.) 

Thankfully, my geneticist told me that many were benefiting from high dose Vitmain C plus magnesium when I asked "what could I do about it?" since I knew there was no cure, since it is genetic. (You will continue to "write" faulty collegen/connective tissue substrate.) I started 1000/day Vit C, and am now up to 6000/day 4 years later and back walking again and haven't looked back. I've since added the Cusack Protocol in the last year and never knew I could have so much natural energy without artificial stimulants like coffee.

Learning about and gettinga  further handle on my comorbid "extra" or "hidden" allergies from Mast Cell Activation Syndrome has helped even more, as this causes me to regularly pass out which is rather show stopping. This is the last thing keeping me from working again in fact, which I am determined to do if I can help it. (Getting closer!)

 

I still use one Lofstrand crutch, but hope to leave that behind soon too if I can help it. I just need to strengthen my core a little bit more to handle inclines and stairs better and tighten up my R leg a bit more. But I now bike, swim and even dance better than I walk again, and am selling my power wheelchair in a fit of optimism I'm feeling that strong again. So there IS hope and help, but it is slow going and takes a lot of discipline. I still hurt, but not nearly so unbearably, and rarely need pain pills now. If I can do it - anyone can! Learn more at http://ohtwist.com