Tag: chronic illness

… you’ve seen ONE Ehlers-Danlos Syndrome patient! It is as individual as fingerprints, no two alike.

So happy to share that the New Driscoll Theory is now available in time for Christmas! Get your copy now! Written by fellow patient and therapeutic optometrist Dr. Diana Driscoll, it addresses the latest research and understanding on what drives so many of our issues and conditions with Ehlers-Danlos Syndrome and POTS and MCAD. Yay

I’m borrowing liberally from Charles Dickens’ A Christmas Carol for this post. This December 2014 I’m thrilled to find myself ever so slowly climbing back out of the hole I fell in when a metaphorical “bomb” went off in my life three years ago and I succumbed to my Ehlers-Danlos Syndrome onset cascade in early 2012 leaving me wheelchair bound

So you’ve finally gotten a diagnosis, and some validation (hopefully!) Now what do you do about it? Sadly, there’s no single remedy or path to recovery (at whatever level) for everyone sorry, due to the systemic nature and extremely wide variation in expression of the condition in each of us, and the myriad complicating comorbidities I keep mentioning. (For

As you’ve probably guessed by now, we can celebrate one or the other of our comorbities just about every month, including our main awareness month of May – which is also for Fibromyalgia awareness. (September was both Chronic Pain and Chiari Malformation Awareness Month – both very common in the EDS community). Well October is for one

Update May 3, 2017: The old references to the BRIGHTON (with an “r”) Diagnostic Criteria in here were OBSOLETED by the brand new 2017 Ehlers-Danlos Syndromes nosology and diagnostic criteria, the first in 20 years! These were introduced March 15, 2017 by the international Ehlers-Danlos Society after several years of hard work pulling experts from

Sorry for my radio silence recently – I’m pleased to say I’ve been consumed with recovering from busting not one, but TWO huge (for me) moves recently I will share more about in another post soon. (They both involve bridges, stay tuned!) Meanwhile, I just can’t help sharing sooner than later the newly announced FIRST

You know you have EDS when… you injure in your sleep! – Jandroid

You know you have EDS when you spend all day getting ready for a simple evening outing.  – Jandroid

I’ve found myself saying this phrase a lot throughout my life. I first learned it in recovery circles – Adult Children of Alcoholics as a teenager, initially. Followed by Codependents Anonymous later. And more recently I’ve been saying it in regard to the medical world’s inability to see and diagnose a form of Ehlers-Danlos Syndrome when