Ableism Awareness Month

April is widely known as “Autism Awareness Month“. However, since following several actually autistic writers and bloggers on Twitter and elsewhere, I’ve come to understand how even calling it that may be “ableist”. (Google the hashtags #ActuallyAutistic and #RedInstead for some samples.) How is that you well ask? What is ableism? Great question! And why

Housekeeping February 2018

Sorry for any recent confusion, but I’m still working out how to retain existing and capture new subscribers to my blog on my new platform since moving hosts late last month. (Same great content, just in a new, spiffier container!) I just put out a test blog post last week, and it appears no one

Weight and EDS and MCAD

This post is apt to be fraught with emotional triggers and landmines due to the nature of the subject itself. Weight loss and management have been a sore point for millions of people for many years, especially in the post war era in the so-called “first world” when big oil and the chemical industry radically

Happy Birthday Oh TWIST!

I just realized while talking to my friend recently that my blog was four years old this month, January 2018. How the time has flown! So I decided to wish myself Happy Blogging Birthday, and treat my site to a makeover. Yes, I’ve been radio silent here for a bit as I’ve been super busy

Amazon Affiliate

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Seeking Zebras of Color

I don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost exclusively being done by white people. And mostly females. Or at least that I’m aware

Validate Yourself

It’s March 20th, 2017, and the new extremely complex and greatly updated Ehlers-Danlos syndromes nosology and diagnostic criteria haven’t even been out for a week, and yet it feels like a month has already passed, my brain is so blown by so much new information and the very emotional response that has erupted since! Lordy!

Handling Change

I’m writing this post ahead of what is likely to be a day of great change for many if not all in the greater Ehlers-Danlos community, if not the world (whether they all know it or not, smile). It is Monday March 13, 2017 as I type this, and we are all waiting on tenterhooks

Wherefor art thou Dysautonomia?

“Homeo(stasis)… oh homeo(stasis)… wherefor out thou dysautonomia?” to mangle a phrase with apologies to all you brilliant Shakespeare scholars. And mix some medical metaphors to boot. Anyone who’s been exploring either Ehlers-Danlos Syndrome or the highly comorbid Mast Cell Activation Diseases (either masto or the new diagnosis of MCAS as of 2016) has likely stumbled

What is Normal

I know, “what is normal” is a really loaded question or statement, but I’m not intending it to be. My normal is not yours, nor theirs, nor anyone else’s. Well truly have our own “normal”. I’m just trying to help distinguish between the majority who are not hypermobile, and those of us who are, but may