I shake my fist in frustration…and I cry.

“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)

 

 

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Author: dawnlovitt

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