Tag: Fibro

May is also MECFS Awareness Month

And I have been quite remiss in not saying more about this over the years. No, really. Just because I happened to figure out and find all the many and varied causes of MY chronic fatigue, and feel I have “solved my case” so to speak*, this does not do justice to my millions of

Slow your roll with me

Huh? What do you mean by that, Jan? Well… I’ll tell you. As my long time followers know, I slowly uncovered and recognized and diagnosed both my autism, and more a propos to this post: my ADHD recently in the summer of 2021 at 54. Finally, I had some additional answers for my mental and

Masking up against COVID-19

Edited to add in January 2022: There is no longer a shortage of medical grade N95 masks in the US as we had at the start of this pandemic in 2020 (see next), but, sadly many are reticent (hesitant) to wear them still. Also, KN95’s and K94s are 95 and 94% effective, whence their names.

Gaslighing Syndrome

TW: CW: discussion of gaslighting and abuse and medical PTSD We rolled out an entire new classification and diagnostic scheme for all of the 13 forms of the Ehlers-Danlos syndromes, as well as a brand new category for those who aren’t quite bendy enough called Hypermobility Spectrum Disorders almost two years ago now, in March

Happy Fifth Birthday Oh TWIST!

Lordy time flies you guys! I was just updating my WordPress theme and all my plugins tonight ahead of upgrading to Gutenberg when I realized I’ve been running this blog for five years now, wow! Happy Birthday to me! Both me and the blog have moved a couple of times since 2014 – hopefully fairly

Beware of Gatekeeping

I’m doing a lot of warning lately, aren’t I? “Beware of Hammer Syndrome” last month. And now, “Beware of Gatekeeping” this month. Hey, it’s October 2018 as I’m hatching this post, so it sort of fits with the Halloween mood, right? (Beware of Ghosts! Boo!) Editors note: This post was first made available in early

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 the Hypermobility Spectrum Disorders (including the forms of EDS) or the highly comorbid Mast Cell Activation Diseases (all forms of mastocytosis, but also the