Sunday, December 26, 2010

Fluids, art & being a mutant/clone

I hope you all have been able to enjoy the holidays, and doing whatever makes you feel good.

In my case, there was another ER visit last week for fluids because I'm awesome.I managed to stay away from the hospital for three weeks this time. I had been feeling craptastic with the usual dysautonomia stuff going on, although not crashing nearly as bad. Thank you Jerome.

I knew I wouldn't be able to ride it out, and I had a few options.

a) Try to avoid the hospital here, and end up in the ER at the shitty Ajax hospital over Christmas, where they don't know me or have anything on file

b) Go during the day, and loose a day's pay

c) Go, when it wasn't going to be busy,where they know me and be able to work the following day.

I chose option C.
The triage nurse was initially a bitchy about the whole thing. She didn't want to listen to me, or add any of the info I brought to my chart because apparently, "they wouldn't know what EDS or dysautonomia were and wouldn't bother reading it." What a bunch of crap. After I insisted, got a little louder, and asked for a new nurse,one of the other nurses took notice and remembered me...My info was added to the chart, and bitchy nurse got put in her place :)

When will people learn not to mess with this girl?

Funny enough, all the ER nurses read my info and let me call the shots. So, I ended up getting the usual 1.5L of fluids and 50mg of Gravol.My blood-work came back normal, waddaya know. They didn't bother with any other tests.

I'm convinced the crazy dysautonomia has something to do with crazy hormones, as it happens every single time. One of my other bendy friends has been getting treatments for funky adrenal/hormonal stuff and since doing so, hasn't had any symptoms of EDS or dysautonomia. She's totally convinced it's all adrenal/hormonal related...When I win the lottery, I'll give it a shot too.

Jerome is finally healed enough for some art.He makes for a really good canvas.I have a ton of ideas but will always welcome requests and suggestions. The possibilities are endless.
Pooh is bendy too! His leg is hyper-extended, his hip and arm that's holding the balloon are dislocated.

Jerome and I were getting Christmas cards, so I thought it would only be appropriate for J to wish everyone a Happy X-mas. This Santa is bad-ass, he's zip-lining!

When I got Jerome put in, someone suggested I somehow make it into a elephant...

Now for the genetic mutant & clone segment of this post. My sister and I are monozygotic (identical) but there are some differences. For one, I don't think we look a-like but apparently we do...We have a lot of the same EDS issues and similarities but she doesn't have dysautonomia, and her range of motion isn't as crazy as mine. Those differences have been attributed to lifestyle differences. Here are some pictures of our "sameness"...
We both have a hard time using our hands, rubbery fingers are pretty useless.

Our hands are turned a full 360 degrees along with some elbow hyper-extension thrown in.

We used to think everyone could turn their legs like that...those crazy normals.

Standing with flat-feet is so over-rated.

Me on the left, my other half on the right. Don't even try to tell me we look alike...Because we don't. End of story.

Before I forget, I had a little Christmas miracle happen :) One of my really good friends has been hearing about my plan "C" for a while now, knows how bad I want it, and thinks it would be perfect for me. I got a pep-talk, and was given a few things to get the ball really rolling the way I want. Moving in with my parents will hopefully be avoided.

And.......skating is still on the "can do" list!!!! I took Monkey in hopes that it would be something we could still do. Last year I had to give up climbing, so we couldn't do that anymore and we were both kind of crushed over it. I tried skating last year and it was a success for both of us. I could still do it, and he got to really work on his balance, co-ordination and gain some confidence. We slapped on some skates and hit the ice last week, without injuries. I use hockey skates, they support my ankles like AFO's and it's a low-impact activity. I was nervous about my really unstable hips, but they were fine. Needless to say, we'll be going again until the rink closes in the spring.

"Here comes the sun, do,do,do,do...I say, it's alright."

1 comment:

  1. I can't decide which I like best...Pooh, Santa, or the elephant! I'm sorry to hear you both have EDS. (EDS SUCKS!) The pictures of you two together demonstrating hypermobility are pretty cool. I'm glad you can still skate!