Friday, July 23, 2010

EhLeRs DaNLoS SyNdRoMe

Things have been moving along.  I've been confirmed/vindicated...

Here is how the actual series of events unfolded.

1. Wore special shoes as a child.. don't know why.  But they were U. G. L. Y.  and I hated them.. (Thus my love of beautiful shoes.  )  

2. Ever since I can remember I have had pain.  My mother would call it growing pains.. (I still have them..)
     a. I have also always been hyper-mobile.  More than most everyone. 

3. High School Volleyball/Track  PAIN bad pain.  Weird pain..  Foot doctor said genetic foot issue wear special shoe inserts.  I tried to keep going but pain still present when running/jumping and while I was good at sports I was not great. 

3. In college I discovered Ballroom Dance!  I was great at that, and high heels have always felt great ever since I begged my mother to let me have them in 8th grade.  (I was relentless.. )  I was great at ballroom! ( this was almost 20 years ago now.. I am old)

4. Still had all of the same issues growing up just ignored them and got used to them.  I am not going to go through the list but I just thought everyone felt the same way.  Which was fine, I got used to it. In fact I got so used to the regular pain I had that I forgot about it.  Ha!  I just was able to do everything anyway! 

5. ... years went by.. Car accident in 2004.  EVERYTHING became dramatically worse.  The pain was unimaginable and my mobility became horrible.  Everything about what I thought I could handle went out the window.  And this coming from a girl who gets her dental work done with out pain medication.

6.  Doctors couldn't figure out why I did not get better from the car accident.  2004 until OFFICIAL DIAGNOSIS YESTERDAY.. Almost SIX years to the day!  Unbelievable.. 

7. My friend/neighbor said to me, I think you have Ehlers Danlos Syndrome...  ( to my self I thought oh another piece of advice.. being the eternal optimist, and fully realizing by this point that the Doctors have no clue.. Why not find a diagnosis from a neighbor!  ) 

8.  The research..  I looked online, looked everywhere.. Yup this looked quite possibly as the reason!  Now how to get the doctors to listen.

9.  Went to my regular Physicians Assistant! L. LOVE HER!  While she didn't know what this was, the student she had with her did!  They decided I should go ahead and see someone who would know more.

10. Went to my Physiatrist Dr. G.  He is AWESOME also.. I told him about my P.A. thinking it was a valid possibility..  He had to think on it for a while before actually deciding this is what was going on with me.  FINALLY 6months or so later.. EDS.. and for a definitive diagnosis off to the geneticist..  Dr. B..

11.  Dr B.  and FIVE other doctors of various specialties and levels.. Gave me the OFFICIAL Ehlers Danlos Hyper-mobility Syndrome Diagnosis..  FINALLY!

Well, no other doctor need question my diagnosis now, Ugg!

To top it off today is the first day in EONS that I have not been plagued with a migraine!  I just couldn't kick them lately.

I am off to a pain ridden life but at least I know why I am having it and why I am not healing.  It does suck but it is also a major relief to know FOR SURE WITH OUT QUESTION that this is what I have and am dealing with.   Thank God for my awesome neighbor R!  She rocks!!

Just so you know, I do listen to people when they share their well meaning advise.  I have tried lots of things.  I will listen, research, and then decide.  But I do listen, and I do appreciate the well meaning ideas that people care enough to share!  Please don't be offended if I don't just jump in and give them a try..  But I will look into it for sure.  I have hope of things that may make life easier for me.

It has been so frustrating because very few people, let alone doctors know what this is.  Which makes it difficult to get help.  So in addition to educating people about service dogs.. I will be educating people about EDS too.  Yipee ki O..

Well, kind of.

Pink Doberman


stipeygirl75 said...

I totally understand - the ugly shoes - blech! That did not help me with popularity at school. Having all these seemingly random problems through life and suddenly realizing they were all RELATED! It really blows your mind when you realize that. It's a relief to realize you have a disease, heh heh :) It was one of the happiest days of my life.

- Sarah

MBG said...

OMG! Your life sounds the same as mine! After a life time of the same stuff- I was diagnosed with EDS!

Pink Doberman said...

Sarah, Oh yes! Shoes! Ugly Ugly shoes can sure cramp a little girls style! I hated those dark brown all leather shoes with black soles.. with an OWL stamped on them!

I wanted the cute shoes everyone else had. They were so hot! I am wearing my sneakers with my fancy shoe inserts today. They do help, my hips do hurt less. I will be gradually wearing some heals again to see how they compare, even if it is just around the house for a while, although I am DYING to wear them out!! It is summer after all!

MBG.. Oh my isn't it frightening! How this all works out and it started so young and we've gone so long with no answers. Hopefully with the next generations of this there will be some understanding at an earlier age!

I am so glad to find some friends with similarities! Sad but happy! You know.. I no longer feel alone! Thank goodness for the internet!