“When you hear hoofbeats, think of horses not zebras” ~ Dr. Theodore Woodward
However, don’t forget…that zebras do exist. I am a zebra.
I never wanted my blog to be another one of those dedicated to bringing awareness to something. I also did not intend for it to be solely about me writing letters to my grandchild either…I just wanted a space to get things out of my head. A place where I could share the things that I want my friends and family (F&F) to know and understand, but really don’t want to talk about.
This is my space.
Today, I am struggling again. I am sitting in a hotel in Carlsbad, California and I am miserable. Not because the weather is bad or because I am with bad company and not even because I am here for work. I am miserable because I am not able to do all that I want to do. I have been forced to miss out on part of the agenda for this trip.
I am limited in my physical activity. Most of my F&F know about my Ehlers-Danlos diagnosis but have little if any understanding of what that means. HECK, I am still learning. But here is the readers digest version (for me specifically, not all EDSers).
This condition is hereditary, my mother or father passed it on to me – I am guessing Mom.
It is a connective tissue disorder. EVERY PART of and ORGAN in our bodies has connective tissue.
I have the Hypermobility type. It won’t kill me…just cause me pain…always. I try not to feel sorry for myself, so many others with EDS have it far worse but today I cried for me.
There are conditions that are referred to as “comorbidities” that are common to EDSers
The doctor who diagnosed me with EDS, has also stated that I have Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS).
I have TMJ Disorder and Sleep Apnea
It has also caused my airway to be smaller/underdeveloped and contributes to sleep apnea, which I cannot wear a CPAP machine or use an oral appliance to correct because I have a reaction to both of them. I have had to have allergy testing to figure out why I cannot wear dental devices to align my jaw and learned that my skin is sensitive to pressure due to DERMATOGRAPHISM (basically a histamine response to pressure) and an allergy to Balsam of Peru and Gold (as well as all the other environmental and animal allergies I have always dealt with).
I could keep going, but I am sick of typing about it and explaining my disorder was not the point of my post. The point is…the frustration. I hate being limited. I had to accept years ago that I cannot wear cute shoes with heels. In the past year or so I was instructed to not use stairs… Because the worst of my pain stems from my sacroiliac joints being out of whack. Yesterday…I was at the beach…in CaliFRICKINfornia…and I will be damned if I wasn’t going to get my toes in the sand.
There were stairs, quite a few.
And the days leading up to my trip were not what I call “down” days – meaning, intentional time of restoration. The day of traveling was brutal. I over did things.
I am paying the price.
(For those of you who want to learn more, this article was written by the doctor who gave me the diagnosis: http://ehlers-danlos.com/2014-annual-conference-files/Heidi%20Collins.pdf)