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
Sadly all too true, too many women are dismissed as either “just depressed” or histrionic despite being in very real pain. (Much of it invisible on scans in those with Ehlers-Danlos). See the shocking results of a National Pain Report survey. Surely we can do better!
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
As everyone knows we just celebrated Independence Day in the US this past week (July 4, 2014). What you may not know is that I also celebrated some personal independence that I’ve newly regained thanks to hundreds of hours of hard dedicated work in the therapy pool, my kitchen and garden, and on my bike. That is,
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
I’m cooking up lots of helpful solutions for all of us afflicted souls, literally as I type this. Meanwhile this is a quick house-keeping (place-holding) post to let my slowly growing reader base know that I’m working hard on sharing the “What to do about it” aspect as soon as I can. The trick is, I’m trying to decide which
Appearances are deceiving. Everyone has undoubtedly experienced some form of misunderstading, bias or disrespect from some form of misjudgement based on our appearance, sick or not. (Racism, sexism, agism). But the appearances of those with any form of Ehlers-Danlos Syndrome are especially deceiving, as the majority with it show no visible outward signs of illness at all. Every EDSer (aka “zebra”
