I am well aware that this blog is lacking in the photo department, at least I think so. So here's EDS in some of it's glory. Enjoy!
Jerome and the Holter are ready to party! Having the gj-tube and all the wires were a huge pain in the ass. Glad it was only for 24hrs. 4 days later, and my skin still isn't happy from all the tape.
Jerome and Holter...Trying to conceal a tube and all the wires was interesting. Eventually I stopped caring, and if people stared, then I hope they got freaked out, haha
A combination of a Al-Greens mix, Iron, Zen Theanine, Fish-oil and salt water. Thank you Jerome, I don't need ingest any of this nasty stuff anymore.
The one good day without any tape rashes in the last two weeks.
This was the piece of paper that has saved me from a TON of fighting with health care providers. I made EVERYONE read it, before they did anything to me or asked questions. It was a life saver.
My new best friends. I was originally going to get the Koi fish tattooed on my leg but then AFO's came along, so this is my plan "B". The Celtic tree of life didn't turn out as originally planned but I think I like it better this way. The Koi is symbolic of perseverance in adversity, and strength of purpose. Also courage and ability to attain high goals. The Celtic tree holds the meaning in balance, strength, longevity,rebirth, life force and interconnectedness with the universe.
The shoulder that dislocates a million times each day. Multi-directional instability, dislocations happening with a 20 degree flexion woot!
Apparently I angered the gods...Dislocated it typing, while yelling at my computer.
I do not enjoy having bendy fingers, it makes everything difficult and I haven't found any advantages of it yet.
I had no idea feet weren't suppose to bend that much...
The classic bending over with straight legs and palms flat on the floor
Didn't know that was abnormal either...I thought everyone could do that. Before the AFO's I walked around with my legs pretty close to looking like that, turned in a little less. Yes, my hips are a mess.
One of my favourite tricks, because the look on people's faces is priceless.
That's how I find myself standing with out supported ankles. Yes, I will forever have horrible tan-lines.
There are more pictures floating around somewhere...I'll get to it another time when I'm stuck in bed.
What doesn't kill you....
6 months ago