Have you ever seen a contortionist . . .

I've told you about Arnold Chiari Malformation type 1, but that is not the only diagnosis I have received in the past 6 yrs. . .
In April of 2004, after thirteen years of daily, constant symptoms I mailed my MRI's to specialists in NY. They responded in less than two weeks with a phone call telling me to come to NY - they think they can help me. I cried. I was so overwhelmed by the fact that a doctor not only believed me, but actually thought they could help me. I had been sick for so many years with no compassion, help, or effort from doctors in Indiana. . . in fact most wanted to send me for a psych evaluation. One even asked me "How is your relationship with God?" I stood there dumbfounded and said, "Its not my relationship with God that is the problem, it is my relationship with pain."
When I got to The Chiari Institute on Long Island it was as if the biggest weight in my life had been lifted. These doctors were kind, compassionate, thorough, and most of all they believed me! This group has Chiari patients from every state and 29 countries - these are the doctors The National Institute of Health works with for this disorder. I finally found a place where I wasn't going to be treated like a guinea pig, or a crazy person. I just wanted to be well enough to care for myself and my family.
Over the past five and half years I have received three major diagnosis: Arnold Chiari Malformation type 1 - 12mm (ACM), Ehlers-Danlos Syndrome (EDS), and a Tethered Spinal Cord (TCS).
Ehlers-Danlos Syndrome is simply having too much elastin in my collagen. So, anything that is not bone is entirely too stretchy. All my joints are lax - some would say 'double jointed', my skin is very stretchy, and there are several other signs of EDS. Basically I could be a contortionist. . . it isn't good for my joints to dislocate them, it does cause early onset arthritis and many other issues. I'm not going to bore you with all the problems this disorder has caused me, but it does cause me pain.
The moral of the story is: next time you see a contortionist and you think to yourself "how the hell did they twist themselves into that position?" Now you know.