I've written enough emails to the newly diagnosed (or self-suspecting, soon-to-be diagnosed), that I decided I should post the info here!...

First of all, anyone who bristles at the word “privilege” -- you’re not alone! I had a really tough time understanding different types...

It’s a cruel irony to have a million medications to manage… all within deep brain fog. Complex illnesses require so much to keep track...

Jon Rodis, an activist with Marfan Syndrome, presented at the EDS conference in Baltimore about the challenges of getting on disability....

One of the strangest parts of being sick is just trying to find a comfortable temperature. As I write this, I am in a t-shirt, no pants,...

How guilt has become an integral part of social meals It’s the holiday season. Festive meals are everywhere. We had a family gathering...

**Note: more detailed stories from this year's Spoonie Retreat will come as soon as I have the time, energy, and head space. But for...

The Ehlers-Danlos Society is trying to address this issue. They recently created this toolbox that I recommend you check out! At the...

I recently wrote a post intending to address this but got into a tangent, so here goes take two! Connective tissues are in every part of...

About the title — each food triggers a slightly different reaction for me. Sugar activates my POTS symptoms, making my heart race and my...

Pain has been with me for most of my life. I used to think that this is just what life is. Of course, then I started asking others...

I described a lot of types of pain in my last post. I’ve been thinking lately about how attitude can impact our perception of pain. Take...

I wrote last year that I don't do typical New Years resolutions, but rather use it as a chance to reflect on who I've been and who I'd...

Happy December everyone! As I mentioned previously, November sucks. But a friend challenged me to turn it into a month of gratitude, and...

(written in August) Wow, what a week! It's been a whirlwind of emotion, information, amazing people, and discovery. There is so much...

For such complex diseases, the diagnoses of EDS and POTS are actually quite straightforward. Unfortunately, it takes an average of 6...

Obviously the Ehlers-Danlos Society's conference had quite a bit to say about EDS... This post will cover highlights, but also links to...

POTS is prevalent enough in the EDS community to warrant two separate talks. Autonomic Dysfunction and EDS, by Dr. Satish Raj slides here...

"Like you have the flu all the time (tired, cold, hot, pain)" -- Dr. Pradeep Chopra I was so glad that they had multiple MCAS talks at...

Management of Chronic Pain Dr. Pradeep Chopra (slides here) First, figure out cause of pain Ex: shoulder pain could be subluxation,...