I realized recently, that my friends often don’t know what my experience with EDS is actually like.  They know I’m in pain, they know I disappear for a while sometimes, but they don’t hear about my experience.  I’m afraid of sounding like a whiner, a complainer, or weak.  Since I know I’m none of these things, most of the time, I thought I would try and share my experience. Let me warn you in advance, it’s not always pretty, but I try to use humour and technical terms to get us through it.

I decided to come to a blog to reach a wider audience, reach some of my fellow spoonies and zebras, see if they can relate. I can always link back!