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, […]
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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 […]
I’ve been going through a rough spot recently. I just got informed that my ankle that has been giving me problems will have to be surgically redone and the previous implant has already been taken out after a car wreck dislodged it. I’ve been subluxing my elbow, which is a […]
When you first start hearing about EDS (or other hard to diagnose conditions like Fibromyalgia), it is often said that getting a diagnosis takes several years. This is for a variety of reasons including, but not limited to, lack of knowledge about the rare syndrome, hesitation on a physicians part […]
The Irksome Thing About Being A Trauma Survivor… …is that it is surprisingly isolating. In an odd way it gives one some sense of what it is like to live in the closet in earlier years. We, as a culture, don’t even like to talk about trauma in an abstract […]
I have a high tolerance for internal pain. I don’t say this in boasting, because in all honestly its more of a hindrance than a benefit. I’ve worked through migraines and walked 200 yards to work on a dislocated hip. While this may spur thoughts of “Wow! You’re tough! That’s […]
Now before I get a flood of responses about how you need to go to a doctor, take a breath and read all of what I’ve got to say because I’ll be the first one to say that I fully appreciate every one of the doctors on my team and […]
Most with chronic illness (and even those going through an acute issue) have all had that well-meaning person offer their suggestion that goes a bit like this: Have you tried talking with your body? It’s only trying to communicate with you. If you learned to talk to your body in […]
I wanted to take a moment today to go into what makes things so very difficult when you’ve got a connective tissue disorder and trying to exercise because whether it’s to just stay moving, lose weight, or reduce pain…it all boils down to similar issues. (This can also be why, […]