Oh TWIST

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

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,

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

Mast cells are spoon thieves, stealing a bunch every time they activate. – Jandroid

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”

If only pain glowed, we could enlighten the world. – Jandroid 3.0

Update May 1, 2017: This post was originally written in 2014, before the brand new category of Hypermobility Spectrum Disorders was introduced by The Ehlers-Danlos Society in March 2017 for those who are “less bendy” or symptomatic per the new EDS criteria. Thus, I will be re-writing this entire post to reflect this fact and

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