Wow, who would have thunk it? Careful what you ask for – you may get it: we seem to be raising enough collective awareness finally through regular and social media that more people are suspecting they may have Ehlers-Danlos Syndrome and seeking out a diagnosis finally, yay. I see increasing numbers of media stories, both
This post is brought to you by Peanut, my faithful therapy rattie and napping partner as I find myself going splat a lot more with my 2nd worst flare since my initial 2012 onset “storm” or “cascade” that first got me diagnosed with Hypermobile type Ehlers-Danlos Syndrome. I’m strongly suspecting a hormonal cause to this
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!
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”
Every chronic illness and issue has an awareness month, and May happens to be the month for Ehlers-Danlos Syndromes Awareness. So prepare to be beat about the ears and eyes with lots of awareness tweets, pins and Facebook posts by your afflicted friends or family. However, THIS year (I’m updating this in April 2017 after
