Or, A Journey Guided by a Phoenix Spirit Over the past year, an incredible bit of collaboration has been brewing. On the surface, it presents as the culmination of being able to release a new EDS ring splint. This is an exciting enough announcement, but allow me to take you […]
chronic illness
20 posts
Alternative Title: Why “Inspiration P*rn” Hurts The Chronic Illness Community Disability and admitting that one is disabled should not be a social faux pas. Everyone is fully able-bodied temporarily. Whether it ends in a sudden accident or the slow creep of life, we’ll all face it in some way. Many […]
Not all families handle having a member with chronic illness in the best of ways. Unfortunately, from what I’ve seen in support groups, most seem to end up with the individual already struggling to feel more like an outcast. This seems especially true when you’ve got a disorder that’s rare […]
This is something that, until recent events, I didn’t realize I struggled with. What Is Imposter Syndrome? Simply put, it’s an internal feeling of not being as skilled or accomplished as others perceive you to be. Instead of feeling good about compliments that are given, you feel as if you’re […]
Whether you’ve been struggling with a chronic illness or you’ve made the break from the bad situation… …more than likely, you just want a place you can talk about what you’re facing and feel normal again. What could be better than a place where other such people congregate? It sounds […]
From the outside looking in, interpersonal interactions of someone with a chronic illness or pain can look a bit unpredictable. Canceled plans at a moment’s notice, stretches of non-communication, sudden shifts in functionality, dazing out while you’re talking, or repeating their stories. While we often talk about the underlying cause […]
It seems that other than yoga, everyone has a magic diet fix for what ails you. It always comes across like snake oil salesmen too. “Oh, if you went vegan, you’d be healed in just a month! Just look at me! I went vegan, lost 50 pounds, my asthma went […]
Neurologist appointment today, and oh did I have questions for her. The *dead* feeling in my right butt cheek, and radiating all the way down to my toes is making me insane! I cannot get away from it, I want to crawl out of my own skin. And my arms, […]
The path to a definitive diagnosis of EDS is a highly personal one. Each of us has a unique story to tell, filled with both heart aches, and triumphs. I would like to share with you my journey on the long road to find answers. For me, as a child […]
What is a Comorbidity? When we’re talking about the term in a medical sense, it means when an additional disease or disorder is present at the same time as another. This is important because many in the medical world are taught to look for a single underlying cause. Think to […]