Tag: medicine

Our Stories of Strength coming out May 2015

I’m thrilled to share that my short “story of strength” was included in the first edition anthology of Our Stories of Strength: Living With Ehlers-Danlos Syndrome that came out on Kindle May 8th, 2015 for EDS Awareness Month! And as of June 1, it is now also in Print on Amazon too! It is co-edited

MCAD linked to Autism Spectrum April 2015

I’m late to the World Autism Awareness Day party which was yesterday, April 2, 2015 as I type this. (Though not late for Autism Awareness Month, which is April, by the way.) But… the good news is, while I failed to get a post out on time for the occasion, I was made privy to

Calling All Geneticists

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

Flares happen

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

Medical Education Opp for Doctors

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

Personal Independence Day

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,

Denial is not a river in Egypt

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 Ehlers-Danlos Syndrome when it’s staring them

Cooking up solutions

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

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”