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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The Struggle

I envision myself on a raft that is filled with air and is transparent, but blue.  I float on the ocean, but near enough to the beach that I can hear the waves hit the shore.  I hear gulls crying overhead. I feel the sun on my skin.  I have one foot dangling in the water, sunglasses on, my body is perfectly healthy, I am wearing a bikini.  No one around…just me. My body does not hurt. My mind is not preoccupied. I am at peace. With a song in my head:

“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand…”

I have been seeing this image every day for the past 7 days.  I have been kicking the tires on “mindfulness” because I have been dealing with some anxiety.  I guess that, if I am to be honest, I have been dealing with anxiety for several years.  It started the year before my father died.  The stress of his poor health was getting to me.  The constant wonder of when the next call would come.  The overwhelming sense of responsibility and obligation while working two jobs, being a wife and a parent to two children…it was a bit much.  Not to mention the pain…the physical pains that were always there from an undiagnosed condition…Ehlers-Danlos Syndrome, but this post is not about that.

I was put on anxiety medication and after my father died, I assumed the anxiety would dissipate so I stopped taking the medication for almost a year…but I was wrong. The anxiety was still there, I just could not attribute it to anything specific.

My weight has been a constant struggle.  I tried All Of The Things that are available and affordable.  I have enough head knowledge to understand what is and what is not good for me…but I don’t have the control.

The anxiety is still there…here.  And I am an anxiety eater.

I am trapped in a vicious cycle.  It took a while to realize where my anxiety came from…the pain.  The constant thinking about whether or not I can or could or should do something and the repercussions if I try or if I don’t try.  Imagine dropping something on the floor…you would just pick it up, right?  I have to think about how to pick it up.  There may be no pain in the moment from bending or kneeling…but later…later is a different story. Dropping that thing on the floor could haunt me for days.

So I take my medication and I try to do my best to do my best, but anxiety makes me want to DO something, it makes my skin crawl and I can’t PHYSICALLY do the things I want to do to make the skin stop crawling – go for a walk, clean the bathtub, an hour of yoga, take a long drive to nowhere – so I turn to the thing that I can do… I eat.

Now if I could live in a box where the only food available to me was that which was good and healthy and necessary, I would be okay.  I think…I’m pretty sure.  But until recently, there were at least two and sometimes four others in my box and they do not share my struggle.  I also work in a box where people share their edible goodies…there are very few places in the vast building I am in for 8+ hours of my day where temptation isn’t lurking at me around a corner, or down the hall… leering at me…lying to me and telling me that just one bite, piece, nibble won’t hurt.  And I am weak in this matter.  I believe the lie. I give in to the temptation.  By eating…I am DOING something and I feel good…for a moment. Then I feel guilty and ashamed and out of control.  I stuff this feeling, these feelings…because there is nothing I can do with them, there is nothing I CAN DO WITH THEM.  The anxiety comes back.  I try to ignore it.  I long for a cigarette or a glass of wine, both of which would cause me pain in one way or another…creating more anxiety.

I begin looking up prescription weight loss medications but my insurance would not cover the cost and I look up eating disorders and cringe when I read about Binge Eating Disorder and wonder…is that me?  I contemplate calling my doctor…but I know what she will suggest, better eating habits (no kidding), exercise (pain), a dietician (costs more than I can afford), journaling my food (I have and it causes me to CONSTANTLY THINK ABOUT FOOD) … I don’t want to seem help resistant but I am tired of this vicious cycle.  I call my spouse and I cry about it and God love him, he wants to help me fix the problem…but I don’t know how he can.

I simply want to be on that raft, in my perfect body, pain-free, anxiety-free… at peace.

God hear my prayer…

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior