Hi!!!! newbie here!

first off, here everyone, have some spoons
alright, now that that's over and done with, Hi I'm Beth!
So far, it is confirmed that I have HEDS/ClassicalEDS, Spina Bifida Oculta, Fibro/CFS, and the obligatory Depression.

To make a looooooooooooooong story short, I've struggled with knee/hip/back pain ever since I could first walk, but it was mostly concentrated in my knees back then. I couldn't ride a bike, walk stairs, etc, and was diagnosed with Patellfemoral syndrome and given a pediatric wheelchair to use when my mom took me shopping, or to the zoo - long distances.
Other than walking long distances though, and a childhood of so many memories of sleepless nights, screaming in pain clutching my knees, I was "normal"!
I danced my whole life - ballet, jazz, hip hop, modern - everything but tap (because it was too much impact on my joints) and we believe that the dancing is actually what prolonged the EDS to sort of hide itself in dormancy until about nearly 2 years ago when things started going downhill.

(ok, I said this would be a long story short allready, BUT...) LONG STORY SHORT! (again ) the pain got intolerable, I got weaker and weaker, was injuring myself daily before I even got to dance class and then in Dance I was doing more watching than dancing, and after a life long passion for Dance I had no other choice but to give it up in one foul swoop
so we figured it obviously had grown into something way way more than Petellafemoral, and after being with a ridiculous orthopedic guy who refused to put a name to what I had, he eventually threw his hands up and said "Okay, It's Ehlers-Danlos for sure, and I aint dealing with it! I won't even touch that topic!!!" but that was for the best because I got referred to Sick Kids Hospital in Toronto, to the Chronic Pain Team which consists of Orthos, Anesthesiologists, Physical Therapist, Occupational Therapist and Psychs.

Gosh, It's so hard to write everything down here in one little post, but that's the gist of it.

Now I'm at the point where, 9 months later, I have come to terms with the whole dance thing. My main dream for the future was Musical Theatre, but I have come to terms that that just simply may not be possible.
I'm over the 'grieving stage' now I think. I've mourned the life that I once lived, but am now at peace with it.
I can only walk for about less than 1 blocks distance without assistance. I use a chair for shopping, going out, "walking" the dogs, socializing..... and I use a cane for shorter less strenuous things.
I only take 1 class a day at school (I'm in Grade 11 so should be taking 4) and my other class, Math, I am taking at home but haven't managed to complete it in 1 semester.

School is one of the hardest things, because it's not only the pain that is such a distraction - it's the unbearable exhaustion!

I've found a new passion though (with the advice and agreement of my Physio of course...) - Horse Riding! Believe it or not, when I am on a horse I feel next to no more pain than when I am sitting in my chair. Of course it is still painful, but I would rather be in pain as a result of actually doing something than being in pain from say, opening the fridge door too quickly!
It's really good for my joints, I have to take it slow obviously, but it is building my muscle strength up slowly in a virtually non-impact way!

Oh god, I've blabbed on and bored even myself.
Oh well, it's great to find this place!

Maybe I'll meet some of you at the EDNF Conference in July

Now I'm off to take some Tramacet and a nap :P

[Johnna]

to EDS Kids! Glad to have you here!

[ReineDeLaSeine14]

What's up I love your chair...lime green rocks!!!

I'm not going to the conference but please tell me all about it!!!!

[stacekins]

hi. welcome to the boards.

[Katherine]

Hey! Welcome

[xxBrittany]

Hello Beth!
My name is Brittany one of the co-owners & other administrator here at EDSkids.

I'm glad you decided to join us and if there is anything that I can help you with please don't hesitate to ask!