She was only 18 when she started-But our bond would grow tighter than I could imagine
Tag: hEDS
The Quality of My Life
Have you ever contemplated the worth of your life? What is my disabled life worth? Anything?
The Support of a Dazzling Community
Without friends with Ehlers-Danlos that I’ve met online, I wouldn’t have the energy or knowledge to advocate for myself.
Zebra Wrangling: Managing those pesky symptoms
In late summer 2018, I took a trip with my mother to Entwistle, Alberta, in Canada where her mother was born. It had been over a year since I had … Continue reading Zebra Wrangling: Managing those pesky symptoms
Meet Me: EDS in May
For the second year, Ehlers-Danlos awareness is my goal for May Last year I participated in my first Ehlers-Danlos Syndrome Awareness month with the goal of earning a pin for … Continue reading Meet Me: EDS in May
Luered to TikTok for Advocacy
It was only days after my official autism diagnosis that I felt compelled to download and install an app I had sworn never to. For many months, I had been … Continue reading Luered to TikTok for Advocacy
A Balm for the Bruises and Bends
I have made no secret of the fact that I endure a considerable amount of pain in relation to my Ehlers-Danlos Syndrome and the subsequent antibiotic injury. How do I manage my Ehlers-Danlos? That … Continue reading A Balm for the Bruises and Bends
Diagnosis: Zebra
After lifetimes of confusing medical problems, an answer is now clear for many “When you hear hoofprints, think horses.” That is what doctors in training are taught. (To listen click … Continue reading Diagnosis: Zebra
Owning Her Stripes
For most of her life, she had experienced pain. Pain that other people said couldn’t exist.
M.E. Slighte 