Monday, June 29, 2009

Here we go........

So I guess this is where I start.

I thought starting a blog would be a really good outlet and place to write about my adventures with Ehlers Danlos Syndrome.
Who knows where it's going to go, but my goal is to make this a positive, empowering and honest place.
I love to canoe, kayak, climb, roller-blade, bike ride, ski, hike, camp and doing my jobs. No matter how bad this condition gets I will never give it up and will always find another way of doing it.

The story begins when I was born.
Twin, two months premature and have had symptoms of EDS my whole life, only after 12 years of looking I finally have a diagnosis. Since this is a condition that is relatively unknown, I am all my doctor's first patient with EDS and baffling them all. Being part of this club includes flying be the seat of my pants and finding ways to live with: constant pain, countless injuries and dislocations, lastly being stuck in the body of Gumby and an old man at the same time.

Somehow I make it work the best I can, which is paramount to my happiness and overall well-being.
I believe in life we are given many challenges, but ones that we can handle with hard work and a good attitude. I also feel everything is a choice. The challenge may not the choice, but what is done with it is always a choice.
This is where being stubborn, positive, creative and optimistic pays off.

In the last year my challenges have included the finding solutions for most of them, while others are still being worked out.
I have had to make a lot of tough choices, but am happy with them.

- Found out that having children is dangerous ='s adopting, and very excited about it one day
- Giving up another University and scholarship of my dreams ='s having complete freedom to choose another adventure
- Loosing ability to do almost everything I love ='s finding different ways to do it
- Being prescribed a boat-load of medications and pain killers ='s giving up western medicine and going to natural medicine.

I have an appointment with a geneticist tomorrow to assess my current diagnosis, wish me luck.
Stem-cell transplant here I come!!!

"I tell them there's no problems, only solutions."
(John Lennon)