I've realized that in the past 2 years, I've withstood a ridiculous amount of medical procedures, many of which I wouldn't wish on my worst enemy (chest tube, anyone?).  I've also battled with insurance companies, disability, non-believing physicians, and dubious friends, family, and co-workers.  Some of these skirmishes are ongoing, some probably will always be there.  But even through the frustration and the daily pain, I try to keep moving forward.  I have been called a "tough cookie" many times, and I believe that living each day with chronic pain and illness has developed the resilience I now have.  It makes sense that spoonies like us have to be resilient; it becomes a trait necessary to survive with chronic pain and illness.  Resilience is the only way we can function and live anything close to a "normal" life.  It is how we can bounce back after a hospitalization, clean the house during a flare, educate physicians, and care for others.  We are spoonies, are we are resilient!

Stacy Dhein
8/20/2017 07:24:30 pm

I had a 6 hour brain function test. The person claimed to be presenting the results at the end. My memory test of a verbal list became blocked. I mentioned having alot of directions of a subject in my head to the point of it being hard to get a proper word or phrase out. They asked the classic, do you also hear voices? No I replied it is the Ehlers danlos hypermobile Addrenalyn. They stopped the test and would not discuss results. Also refused to give the Ehlers danlos hypermobile diagnosis type of brain function difference any acknowledgment. Can't you as a Doctor present to other Brain doctors this reality? The "Dr. Jarett. Roseberry. Also shamed my Grand Son with a harsh diagnosis. He is in Milwaukee Froedert Hospital. Please contact him for all Ehlers, Brained people's vulnerable testing he is spreading Bad ink on their records by asserting Psychosis on us. Or Cronic oppression disorders determination s. He is ruining others especially children's future by doing his "work".


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