For a few months I’d been lurking on the rare disease, chronic pain, and CRPS communities on Twitter (you can read about that here). I would read the tweets, or micro-posts, written by people who have the same rare disease that I do. Even without Read More …

Disbelief. Doubtfulness. Incredulity. Skepticism. Sometimes even suspicion. These words describe the reactions – that I’ve felt, heard, seen, and sensed – to parts of my CRPS patient journey. Not from my family or friends, or even from acquaintances or colleagues who know me fairly well. Read More …

A few weeks after my diagnosis, what I remember really wanting (other than for the disease to just disappear, all by itself!!!) was to find other people living with the same problems; to feel less alone in the daily struggle with pain and physical limitations. Read More …

Today’s the 3rd annual Color the World Orange Day – to raise awareness for a rare & (usually) invisible disease. This disease is called Complex Regional Pain Syndrome (CRPS). To make things a bit more difficult for this rare disease, the few physicians who know about it Read More …