My road to finding me....

This summer has been a whirlwind with doctors appointments with the leading experts of Ehlers Danlos.  I visited with Dr. Clair Francamano, leading geneticist and finally nailed down which type of EDS I have.  It was classified as Classic Ehlers Danlos with Hypermobility.  

Following that appointment I went to Dr. Fraser Henderson in Bethesda.  He is the most caring and compassionate person I have ever met, not to mention out of the pool of doctors known.   On August 17th I had surgery for a tethered spinal cord, followed 4 days later by a fusion and plating of cervical 4-5, 5-6, 6-7.   

I am 4 week post op presently and the disabling headaches have dissipated thankfully.  My body is trying to heal, and my paranoia of "messing things up" is overwhelming.  I am concerned if I should walk more, or did I walk too much.  Should I be in physical therapy, or do I need to heal more?   What about my posture, am I sitting in a way that could further worsen my symptoms as most EDS people do. 

"Normalcy" is all definitely relevant.  I did not know that other people could not twist all the way around while seated in a chair and grab the gallon of milk out of the fridge.  

This journey is hopefully one of learning to live.   My situation of genetic misfortunes is not optimal, however, I will do whatever necessary to not only continue, but enjoy my life.

Dealing

I was recently diagnosed with Ehlers Danlos Hypermobility.  I have spent countless hours researching, and trying to understand this condition that has plagued me all my life.  We have just formally met, but the overwhelming presence has always haunted me.  

The many roles that I try to fill include a wife, a mother of 3 beautiful children (ages 6-10), a special education teacher, a daughter to a very frustrating mother who is bed bound at the age of 62, a daughter to my father who passed away unexpectantly at 63 years of age, and others.

My goal is to know what I am dealing with, and deal with it.  I continue on with my life, embarrassed by my limitations, yet refusing to be defeated.  I CAN'T be defeated.  I have to continue on with the roles, and not fail.... especially the mother role.  That is my biggest fear...

I am hoping to share resources to any who are in need.  I am "techie" to a point, and am a visual person, love order, lists, charts, anything that can help me with stability.

Resources to follow :)