Tuesday, January 4, 2011

Photos of this, that, and everything else EDS related

Happy New Year!!

I had been reflecting on the insanity that 2010 brought me. It was a wild ride, and far from boring.It was packed with some really difficult realities that had to be faced and in all of that mess, there were countless little miracles and incredible learning experiences. 2010 made me realize the universe has my back, and that was the greatest feeling ever.

Jerome is still playing the same games. Hopefully now that all the doctors offices are open, we can get down to the bottom of this stuff. A bunch of bendy friends gave me their two cents on the whole thing. It's nice to know that I haven't gone crazy, and that yes, with EDS surgeries fail. The thought of doing another couple procedures doesn't bother me, either does the pain and recovery. What does scare the crap out of me, is having to stay at the hospital and put trust in a system that made some dangerous, completely avoidable mistakes the first time. This girl already has enough trust/trauma issues from dealing with hospitals. So, I'll do what I feel is right for me, when it feels right for me. Take that negativity!

My application for school has been submitted. Now I'm in the process of filling out scholarship and funding applications like a mad-woman. Watch out school, here I come!!

This post is going to contain a lot of pictures, hope you're ready. Maybe some of the things I use to help me, will give you ideas on how to navigate life being bendy.

Since the Leuko-tape tears at my skin too much it's great for brace repair. Yoga mats make for great cushioning and traction on ankle braces when you don't want to wear shoes. Velcro and Gorilla glue are my best friends.

Living with EDS and a tube as spontaneously as possible, involves being a bit of a nomad. It all lives in zip-lock bag in my backpack. That way, I can "eat" and take care of J wherever I am.

What Jerome eats, and what keeps me mostly out of the hospital. It's so nice to push it through a tube and avoid having to gag while getting it down. The stuff works brilliantly, and is wonderful but tastes horrible.

EDS + GJ-tube can be high maintenance, with very slow healing... 2 mts later, and J is still not healed. Whoever came up with the idea of alcohol in a spray bottle is my hero. Calendula works well on minor rashes but the best thing ever is the Plaintain Salve. It takes care of wounds, bad rashes and helps take the adhesive off skin.Tape...the bane of my existence. Transpore works well if you really want something to stick but it leaves epic rashes. Paper-tape (Micropore) is much better and easier on the skin. The only down-fall is that it doesn't stick for long and sometimes Jerome runs away.

Some of the wonderful stuff that brings pain relief. I don't use the Deep-cold, heat patches or Bio-freeze as much but I like to have it around. The Chinese herbs have to be my favourite things though, along with the Acu-Ball.

When your hands are bendable, it's hard to hold on to anything. I mostly use a normal pen with a grippy thing for writing, but sometimes use the PenAgain. When my hands don't feel like holding on to my utensils I have a grippy that makes it a lot easier. The vegetable peeler is amazing. You put the ring bit on your finger and the blade in your palm, no holding necessary. When I can't open things, using stick-mat is key. I can't imagine life now without an indestructible water bottle with a spill-guard and a lid that opens easily.

Multi-tasking at it's best. Didgeridooing and drinking at the same time, while in the world's most comfortable bed. It's totally possible.

Dear: Jerome, you can have all the nasty fluids concoction you want. Drink up!!

Fluids concoction in the Kangaroo pump set. Consists of Calcium, Magnesium, sea salt and water. The sea salt maintains BP, Magnesium helps with pain, muscle tightness, keeping HR and arrythmias under control. Calcium, well because we need it more than the average person.

Then there's the times when bendy friends get together. We're not just a bunch of pretty faces...

Some of the Toronto and area bendy posse.

Funny enough, we drank all the other alcohol except for the zebra wine....we'll save that for next time. Maybe Jerome would like it.

Then we went swimming and hot-tubbing for 2.5 glorious hours. Pain relief at it's best.

And just hung-out being all bendable...

And played a game of "let's do bendy tricks!"

Which consisted of this...

And this...it's not impossible to lick your elbow.

More wonderful carelessness, you just gotta sometimes. Please excuse the cave-man hair.

You can't see it but there were at least two hyper-extended knees and really messy hips.

If only this picture showed the epic-ness of that rash. The rash on the left side of the Tegaderm is from where I tape Jerome. It's not healed enough for me to use the other side of my stomach so I have to stick with moving it around on that one side. I do love Tegaderm though, it's so much better than using Leuko-tape or duct tape with a sandwich bag to cover J up. Coban wrap and plantain salve were my best friends for the next two days.

Holly, the brains behind the newest EDS research, her boyfriend Ted is bendy.

"Creativity comes from trust. Trust your instincts."
(Rita Mae Brown)

And the one that's keeping me going this week:

"Divide each difficulty into as many parts as is feasible and necessary to resolve it"
(Rene Descartes)


  1. I am sorry to hear that Jerome has not been behaving himself! I was reading your blog regularly until my laptop practically exploded without any warning late in November. I just skimmed over the last few entries and looks like things have been interesting in that way that we EDSers know so well. If you'd like, send me an e-mail of the supplies you use, as the Puggle and I have plenty of extra that we'd gladly send your way. I hope your holidays were pleasant. Hang in there. Also, I can tell you a bit about the fundo, at least from the Puggle's perspective.

  2. Hi Nicole,

    Nice to see you're putting the leukotape in good use. Thanks for sharing your adventures with ED.

    Aila (CBI)