Surviving Ehlers Danlos one page at a time
I spent 10 years in pain with no doctor able to help. I have finally been diagnosed with EDS and want to write a book about the story.
As a child i was about as clumsy as they came and 'double jointed'. I also suffered from strange but intense pains that would send me screaming to the ER, only for them to be called 'growing pains' and to be sent home still in pain. As i got older they only got worse and my parents began to believe that i was a bit of a hypochondriac. Around the age of 15 i started to have intense pains in my right knee along with swelling. The pain was worse than the swelling would indicate and my stepfather began to tell me i was just completely faking it, something that still affects me to this day. Then it began to spread, first to my left knee, then to my hip. I also somehow lost a lot of the hearing in my right ear without any great explanation from doctors. I then pretty much gave up on the medical field and began to just learn to cope with the flare ups the best that i could, although other parts of my body were beginning to be affected. This worked right up until last year when i had my hormonal IUD removed. In just a couple short months i was diagnosed with IBS, PCOS, and endometriosis. The pain increased 10 fold and i was diagnosed with arthropathy throughout most of my body, including my sternum and collarbone. Constantly i was being told "we see something is wrong but don't know what." The list of doctors I've seen is as long as my arm. Finally, i met this amazing wonderful doctor who actually listened to me and when i pulled my shoulder from its socket to show how loose my joints were a eureka look came across her face. She had read about a genetic disorder called Ehlers -Danlos syndrome that affects the collagen or 'glue' that makes up about 80+ percent of our bodies. Unfortunately, she had never seen or treated a case before so she couldn't say it for sure. Me, being the Google maniac that i am went home and typed it in. I'm going to have to buy a thesaurus to find a word to convey my awe at seeing people bend and fold like i do. Of reading stories from people (mostly women) that sounded as if i could have written them. I spent hours pouring through information, each picture, each story, more relatable than the last. It took another during of doctors but finally i had my answer. The high of this was more intense than any drug. I just couldn't believe that i had finally found it. And that i wasn't crazy. The high was short lived though, the disorder is degenerative and my quality of life is never going to be a great one.
But I'm giving out too much information! You'll have to wait for the book for a more detailed and in depth look into my life as a 'potatohead' as i call it. I want to help raise awareness for this disorder so others don't have to go through years of feeling crazy and weak. This story writes itself for me, and I'm getting information from my mother as well. She was diagnosed just days after me. I can't imagine spending an extra 20 years more than i have not understanding what it is that made us different.
Risks and challenges
Obviously my health may slow me down a little. But what else better could i do on days that my mobility is non existent. I believe in this so much i can't imagine anything short of death preventing me from raising awareness and sharing my story.Learn about accountability on Kickstarter
- (30 days)