Hello, Goodbye…Revolving Geneticists

Our old geneticist went to another hospital in another state. I can’t say we were sad to see him go. He made some uber creepy comments and we weren’t at all comfortable with him or his comments about boys only wanting my daughter for sex and how she “didn’t look 13”. (At her first visit.)…

Gastroparesis: Life on Liquids

I should start by saying that I’m thankful that her Gastroparesis flares, and she only has to stay on a liquid diet while things are flaring up. Some people are always on a liquid diet, or even need feeding tubes, so we are thankful it’s not worse. We really are. However, that doesn’t make it…

EDS: The Fall Guy

Finally getting the Ehlers-Danlos diagnosis brings a bag of mixed emotions. On one hand, it’s such a relief to know why you have all of these problems! Reading about others like you, and possibly connecting online, really makes you feel like you’re not alone. You could spend days reading comments and stories and thinking “Me,…

Part-Time Wheelchair User

 Our daughter is a speed demon in Eddie, her wheelchair affectionately named after her EDS. She often gives her Dad and I mini heart attacks with her speed, trying to “drift” like she’s in a Fast and Furious movie, and popping wheelies. On the one hand, we’re glad she can have fun doing anything, including…

Doctors, and Labs, and PT, Oh My!

For other zebras, days like these sound very familiar. My zebra, like many others, has several other health issues that are found more commonly in EDS or are part of her EDS. So on top of the EDS itself, she has Neuropathy, Secondary Adrenal Insufficiency, Autoimmune Thyroid Disease (aka Hashimoto’s),  and Gastroparesis. Thankfully the latter…