Crack open the champagne, my #spoonie friends. The day many of us dream about for years has finally come upon me. I’m happy to announce after 17 years of desperately seeking answers to my myriad strange health problems, I finally have a definitive diagnosis that not only fits my entire health history, but that of … Continue reading Being Diagnosed with #EDS
Tips on how to find a specialist to diagnose your rare disease, how to prepare for your appointment and what you need to provide so your specialist can make the best diagnosis possible.
After years of therapy and hard work on the self, I had a certain sense of pride in all I accomplished to overcome so many of the negative childhood thoughts, feelings and behaviors that came from being a neglected child who spent her life as the family scapegoat and caregiver. One particular point of pride … Continue reading Disability, Grief & Looking Toward the Future
It seems there's no end to the dangers one may encounter as a zebra, and no matter how hard I work to achieve better health, joint stability and overall wellness, there are always going to be things the average healthy population takes for granted that I and other zebras will never be able to do. … Continue reading When Oompa Loompa Sat on a Hill