Oh TWIST

… I have a low pain threshold, and feel loads of pain. I have very high pain tolerance. I just have much more pain than most.

Birds of a feather flock together. And although we like to call ourselves medical “zebras”, for the purposes of this discussion I’m calling us birds to honor the age-old adage. Because we definitely flock and hang together whether we realize it or not, diagnosed or not from what I can see. I keep finding increasing

As the current coordinator for the PNW Chapter of The Mastocytosis Society covering the greater Pacific Northwestern region of the US plus a few neighboring Canadians, I’ve been eager to help educate both patients and doctors as much as possible to this collection of diseases involving mast cell activation that goes so rarely diagnosed. Alas

Author’s note March 16, 2017: Since the brand new updated criteria and nosology for all forms of the now plural Ehlers-Danlos Syndromes (13 of them as of 2017) and the brand new category of Hypermobility Spectrum Disorders JUST came out, please bear with me as I get my site updated to reflect this. Accordingly, please take

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

Editor’s note April 2024: I’m behind on updating all my pages to reflect the change in terminology in the mast cell disease world. Mast Cell Diseases, or just MCD (no “A”) is now the official umbrella term for all forms of mast cell diseases, including Mastocytosis (all the forms), HaTS, and MCAS among other less

It is with a VERY heavy heart that I share the sad news that my beloved and sweet therapy rattie Peanut has moved on to cross to Rainbow Bridge suddenly last Friday March 20, 2015. I was in the middle of trying to schedule surgery to remove some rapidly growing tumors she had started sporting

I’m slowly cooking up my own “Pain and EDS” post, but meanwhile, I felt this one by fellow blogger and sufferer Zyp Czyk worth sharing sooner than later.

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

Those who have any form of Ehlers-Danlos Syndrome (EDS) like me (with hEDS) or the new diagnosis of Hypermobility Spectrum Disorder (since March 2017) can tell you there is definitely some fatigue involved from the strain on weak muscles, torn tendons and ligaments and all forms of our connective tissue. Those of us with the very