Category: About EDS

Peanut Takes Her Last Nap March 2015

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

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

Fatigue and EDS

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

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

January is Thyroid Awareness Month

January is Thyroid Awareness month, and I bring this to your attention at this time because a majority of the patietns I’ve met in person with any form of the Ehlers-Danlos Syndromes (or Hypermobility Spectrum Disorders since 2017) seems to also show signs of SOME form of thyroid imbalance. But quite frequently hypothyroidism or under-active

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for my blog. Although I’m no where near as popular and well read (nor prolific) as some of my fellow spoonie bloggers yet (I’m struggling to stay fed and watered still), I’m quite happy with my initial foray this past year, reaching 47 countries and 7100

Dr. Diana’s New Book The Driscoll Theory® is Now Available!

So happy to share that the New Driscoll Theory is now available in time for Christmas! Get your copy now! Written by fellow patient and therapeutic optometrist Dr. Diana Driscoll, it addresses the latest research and understanding on what drives so many of our issues and conditions with Ehlers-Danlos Syndrome and POTS and MCAD. Yay

Of Christmas Ghosts and Spoons

I’m borrowing liberally from Charles Dickens’ A Christmas Carol for this post. This December 2014 I’m thrilled to find myself ever so slowly climbing back out of the hole I fell in when a metaphorical “bomb” went off in my life three years ago and I succumbed to my Ehlers-Danlos Syndrome onset cascade in early 2012 leaving me wheelchair bound

Solve for both X and Y

So you’ve finally gotten a diagnosis, and some validation (hopefully!) Now what do you do about it? Sadly, there’s no single remedy or path to recovery (at whatever level) for everyone sorry, due to the systemic nature and extremely wide variation in expression of the condition in each of us, and the myriad complicating comorbidities I keep mentioning. (For