Hello to: Whoever may still be here!
In case you were wondering what ever happened to this thing, it was sorrily neglected. Sickness got the best of me and almost everything had to take a back-seat.
My "5 year plan" that was well on it 's way to becoming a reality, and my "new EDSy life" was looking pretty promising. That all went down the drain, and life became a matter of survival with fun thrown in wherever possible.
When I first started learning about EDS, I remember thinking that no matter how bad things got; my emotional well being wouldn't be all much affected. That was when I had a ton of energy and in my "prime". Now that my life has come a complete 180, I understand exactly what they talking about. Needless to say, it was a giant slice of humble pie. I had to learn to flex my brain muscles instead, and am still working on it.
Our little local EDS "Bendy posse" evolved into an Ontario group, and now it is Canada wide. Though it's taken a ton of very hard work, and endless advocating, it has grown into something far beyond what we could imagine was possible.
Here is EDS Canada in all of it's glory:http://ehlers-danlossyndromecanada.org/
I've got a big catch-up post in the works, and will be adding more info. to the blog. I'm hoping to have it complete in a week's time.
Please check back soon!!!!