Sunday, August 28, 2011

When EDS kicks everyone's butts!

If you've been wondering what's been happening in EDS land over here, I have 3 big posts in the works.

*I went to the 2011 EDNF conference with most of our Toronto/Ontario bendy posse. I Had the time of my life, and I think I can speak for a lot of the zebra's who went.
*In the last month, most of our Toronto bendy posse have been on ER runs and in & out of the hospital, myself included. In the last three weeks, three of our bendy posse sista's got an ambulance ride to the ER.

*Our Toronto bendy sista Natalie passed away. She's on the left in this one. We'll all miss her kindness, compassion and those big blue eyes.

I'm so lucky to have bendy friends in my life. We all laugh at the fact that we only met a year ago and for some of us a few months ago, but we already have such a deep connection and dynamic. We each play an important role in our group that enables us to hold each other up, and provides a safe place to land when we fall. We always find a way to make the best of some very hard circumstances and know there's nothing we can't ask of each other.

Even if we ask for help to "clean" a J-tube. In all seriousness, we will leave no stone unturned in a quest to help each other out.

To my Zebras: it started out as an exchange of information. Doctor talk. OHIP talk. Pain in the $@&! talk.... But... what grew out of it was the deepest of friendships any of us had ever known ♥ "



  1. NAKKI!!! So glad to see you back around these parts! I was wondering where you had gotten off to! I'm glad you all got to attend the EDNF conference. That's something I would really like to do in the next year or two. I imagine it was wonderful to be around so many folks with the same crazy bodies with so many different stories. And I can only imagine what can be learned there!

    Sorry to hear that you've lost a member of the posse. That's sad, and I hope that she didn't suffer in her final hours. Blessings to her, and to all of you at the loss of a friend (lost, but I'm certain, not forgotten).

    I've reached out on FB to bendy types and zebras in my area. Though there aren't many near me so far, I might just begin to form my own legion of bendies! And I owe a lot of that drive to you. Seeing you with your bendy posse and how great it is that you have that support system, it's something I very much want myself, and I know there are just as many others like us out in the world who want the same thing. So here's to hoping my bendy legion is every bit as great as your posse. And who knows, maybe one day we can meet up the two and create something SUPER!

    I hope you are well! Sending gentle hugs and lots of good juju your way!

  2. My condolences for the loss of your friend.