Life...with Ehlers Danlos Syndrome

Life...with Ehlers Danlos Syndrome

Being born "hypermobile" is very challenging. Sitting for any duration of time is literally torture and just yesterday while cleaning my apartment and really enjoying myself doing tons of laundry my right hip went out of joint and I was in searing nerve pain from just below my right rib to just below the back of my right knee.

This is not fun.

This is not something I would wish on my worst enemy but thank God for my friend Rober's pharmacy just up the street and I was able to straggle up, and whoever thought this one up is a pure genius, the pharmacists are able to prescribe and I didn't care what it was as long as it worked. I am actually very anti-prescription medication until pain hijacks me so much I am the first in line for anything that will possibly help me cope. I have an extremely high pain threshold from being a chronic pain sufferer since I was 7 years old but even I have my limits where I have to give in and get some relief...even if it is just for a little bit to let me breathe.

So with my stash in hand I then staggered home with some prescription nerve medicine and a muscle relaxant which were exceptionally effective in keeping me from jumping and ending it all. Sometimes you just have to give in...there are no awards at the end of the day or this life for who can put up with suffering the most. My pain specialist doctor told me this when I was trying to "wing it" and handle this disorder sans medications.

Thankfully too my kids all know how to dig their elbows into my hip joint and pull me in all sorts of odd directions...and it just slid back in.

But the odds are not in my favour at the moment of it staying there because just like it can slid back in...it is very fond of sliding back out.

The nerves are not happy either with being squished in places they are not designed to be. So now today is all about calming them while trying to keep my hip stable.

Stable...what a word. I have been struggling to keep my low blood pressure stable, my migraines under control and now the hip wants to join the party. I am pretty sure whoever was over seeing "quality control" over me while my body was being assembled for my souls journey here on earth was drinking heavily or clearly distracted.

I feel like a gumbie doll...and my poor Sterling all the way over in Korea, who has inherited this disorder is also in a proper heap with her unstable pelvis only she doesn't have anyone to help get her hips back into alignment and she doesn't have any drugs.

Although she is 26 years younger than me and just at the "beginning" of falling apart, getting hit by a car in a hit and run in LA 5 years ago where she fractured her pelvis has not helped matters and basically has put us in the same state.

Being a professional model who has been traveling the world for the last 10 years I am sure she is pretty happy she inherited my cheekbones but I am also pretty sure she is not too impressed to have inherited the EDS gene.

So honestly I know it can be a lot worse.

My wish is for Sterling to come here to Edmonton to be with us and with her two brothers we can bring awareness to this disorder and assemble the help we need to better cope with this. There is no cure, just management of symptoms so it does become a full time job eventually.

In the meantime strolling and wandering are out for the moment and I am just going to pass the time being a pretzel.

Randy Smith...my oh so awesome and amazing massage therapist in Ontario please move to Edmonton so you can put me back together again. With all my surgeries I am literally held together with rubber bands, sutures and scar tissue.

Oh yes life with a broken body and brain but an oh so fired up soul and spirit. I38600469_527464524354697_868608327607648256_n.png