Before my Ehlers-Danlos diagnosis,Athena and I bent ourselves around one another to sleep. Before my ASD diagnosis, Athena helped me stim. Before my sensory processing disorder diagnosis, Athena helped me … Continue reading Before and After: A Poem
Caring for Me
She was only 18 when she started-But our bond would grow tighter than I could imagine
The Quality of My Life
Have you ever contemplated the worth of your life? What is my disabled life worth? Anything?
Wrapping Up A Month of Awareness and Preparing for Pride
It’s been a month! Thanks for connecting to me and for taking your time to read the posts I’ve shared. Below is the latest episode of my vlogcast with updates … Continue reading Wrapping Up A Month of Awareness and Preparing for Pride
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.
The Value of Visibility
Why I Participate in Ehlers-Danlos Awareness Month It happened the second Friday of May. I was fishing money out of my zipper pouch, purchased with gift card funds from the … Continue reading The Value of Visibility
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
What I Wish Everyone Knew About Ehlers-Danlos
I posted a tip of the iceberg of what I want people to understand about Ehlers-Danlos to several social media sites early Sunday morning.
I have a few more to add now.
My Path to Diagnosis
For Ehlers-Danlos Awareness month, we are prompted to share our paths to diagnosis for day fifteen. It was a dreary winter day, normal and rainy like a typical December day … Continue reading My Path to Diagnosis