Digesting the Facts is a website about living with Ehlers-Danlos Syndrome and comorbid conditions that combines a blog, educational information, and research articles. I’m sharing my story in order to show others that they’re not alone and that it’s possible to live a happy, meaningful life despite having a chronic condition. I write about managing a feeding tube, dealing with health insurance and the medical system, and my advocacy activities. I often collaborate with other support organizations and do as much patient advocacy work as my health permits, especially for pain patients like me. Please check out my Advocacy page and article on The Case for Opioid Therapy for more information.
When I was diagnosed with gastroparesis in 2012, I had trouble finding information on my condition. I felt totally bewildered and alone. I had to have a gastrojejunal feeding tube placed in 2014 because I became unable to eat, and after the surgery I spent a frantic few months trying to learn even the most basic coping techniques, like where to order medical tape. I recovered from my severe malnutrition, but something was still wrong, and I had to fight for the next two years for the correct diagnosis – Ehlers-Danlos Syndrome, which caused my gastroparesis, dysautonomia, and Mast Cell Activation Syndrome. At every step of the way I was faced with a complete lack of information and support from my doctors and the medical industry in general. As I became stronger, I became determined to do something about this.
I hope that what I’ve written will help someone else in their journey to proper diagnosis and treatment.
You’re not alone. Keep fighting.