Tuesday, October 19, 2010

Moving at warp speed: AFO's, surgery and life all at once

Where to start....

Well, I've got my AFO's and they're awesome!
Originally, had wanted them to be short and hinged. When I went to pick them up, they were tall (or I guess standard size). The orthotist thought it'd be a smart idea to keep them tall and give 'em a try before cutting them down and loosing the option of going back. Stupid me, never really thought of that. I'm an impulsive and rather stubborn person. I get an idea and go for it without looking back. The idea behind keeping them tall, was to help with the knee hyper-extension. I put them on, stood up, and my knees hyper-extended. Scrap that plan, EDS had other ideas. I decided to give it a few days, sleep on it, and see if I could get used to them. Two days later, I was back getting a bunch of modifications. I had somehow managed to pull my calves, which is pretty much impossible. My legs are always tight, I'd love to be able to stretch them but I'm just too bendy. The only time they get a stretch or dug out is when I'm at the chiropractor and she goes in with the elbows. The fact that my legs were stretched and sore from the AFO's was not a good sign. We ended up cutting them down to the same height as my PUSH braces I had before hand. A bunch of padding got removed and some added to other places. I got the bottoms completely padded, along with some supports put in where my toes meet my feet. It was gross walking around feeling all the little bones slide around, they needed to stay in place. Now, I have some bad-ass AFO's. My ankles are stable, and I don't internally rotate my hip nearly as much. When I do walk with my leg turned in, I can correct it and maintain it. One of my friends noticed straight away how much better I was walking.

I only ended up with one pair of shoes that fit, and still have to part with 18 other pairs :(
Luckily, a friend went shoe shopping with me this weekend, and I came home with 2 new pairs. I'm glad she came with me, as I probably would have had a meltdown over shoes if she hadn't helped keep my head on straight. It only took 4 hours and a million fails, but we did it. The coolest part of this so far, is that I was able to walk around those 4 hours without any problems. Nothing really hurt, and I still had energy at the end of the day. There's no way I would have been able to pull that off before, my limit was about 1.5 hrs. So, even though they're bulky, hot, and sometimes bring unwanted attention, I.LOVE.MY.AFO's.

Surgery...that's happening in T-8 days. Yep, pretty soon I'll be able to "eat" anything nasty via gj-tube. I'm really excited at the thought of being able to avoid the following things: blocking my airway, insane reflux, vomiting, TMJ pain, and getting pneumonia from aspirating. 4 times in 3 years is enough for this girl. It should also help keep me out of the ER when the dysautonomia gets crazy. I will also be honest and say I'm a little terrified. The GI specialist doesn't really seem to get the seriousness of EDS and the issues that come with it. I feel like he completely discounts the fact that autonomic disorders are secondary to EDS, which is extremely frustrating. When I went to fill out the pre-op paperwork, he had already completed some of it. Apparently, I'm not at risk for having bleeding, cardio. and neuro. issues from the surgery. Hahahaha. That all had to get fixed. I made an info. pack for the anesthesiologist, so I'm hoping they do some reading, and keep a good eye on me. They're using general anesthesia, since locals don't work on this girl and I'd rather be completely knocked out and have the best nap of my life, than to feel everything and loose more trust in the medical community. I guess one of the things that really makes me nervous is potentially waking up with a subluxed neck (I just got over my last one) or more TMJ issues which is very probable from intubation. Barf!

So far, the hospital seems to be taking this EDS thing seriously, and for that I am thankful. It's going to be really inconvenient and I'll probably go crazy from boredom at one point, but it's better than being neglected. I've got to go in 24hrs before to be admitted...They don't need to run any labs or tests since they have everything on file from my ER visits. No complaints about avoiding blown-out veins. I hope the nursing staff understand that I'm not a princess when I ask for 5 pillows, to keep my joints in place. I almost managed to give myself a little panic attack when I realized that going outside as I please, won't be an option. It's going to feel like jail. I need to be able to go outside, it's the one thing in life that keeps me sane. Maybe my friends can help me escape when they come visit.

I've been very fortunate to have friends offer their help with whatever I'd need. I've got one friend who's going to be my "person" when I'm in surgery. I'm going to leave her with a bunch of EDS info, and I know she'll advocate and raise hell if need be. I've got some other friends who are going to bring me some yummy, non-hospital, wheat-free food. Mmmmm. So far, it looks like my bases are covered from visitors, to food and everything in between. This weekend will consist of pre-cooking meals and getting everything together. I am determined to recover comfortably with minimal stress and good food. It's a bit ironic how I keep obsessing over food, when I'm getting a tube put in me because food isn't much of a friend. The one thing I'm not worried about (yet) is pain control. I know that if it can't be controlled with meds, which shouldn't be a problem, I'll still have my super-powers and juju coming from my friends.

The year seems to have flown by, and now I'm thinking about my plan "C" and what it will entail. It's a new beginning which I am very excited for, but it also means another end to something I love but have had to give up. I'm really going to miss my current job. There is so much magic that happens, and I've never gone a day without learning something. Every work day contains fun, discovery, mastery of a new skill, a good laugh and some of the most innocent moments life has to offer. I wish I could bottle the stuff that my work is made of, the world would be a happier place. I get paid to play, finger-paint, teach, eat ice cream, go to the beach and so many other awesome things. I have no interest in a desk job, none at all. Not only will I be sad to leave the kiddo I've been with almost every day for 2.5 years, but it will also signify that I have officially given up the last thing that was still on the "can do" list from before things got bad. Thanks EDS.

I'll have some pictures of the new bad-ass AFO's and body-piercing. I've already come up with some ideas to make the tube look cool, and if not, funny. Life is too short to dwell on the silly things, we need to find the fun and run with it.

P.S. T-2 days until I see the Dalai Lama. I'm going with a bendy friend, we scored accessible seating, a first for both of us, should be interesting. He's doing his talk on Approaches to World Peace. Sooooo excited. The place is going to be packed with juju and everything good!


  1. If you're worried about TMJ and jaw dislocations, you may want to ask your doc/surgeon/anesthesiologist about nasotracheal airway maintenance. They can put a tube in your nose instead of poking around with your jaw and mouth. It's not nearly as commonly used in surgery as ET intubation is because oral route is easier and faster, but there's nothing wrong with going in through the nose if it's an experienced doc doing it. It would save your neck and jaw some pain (though you would have some pain in your nostril afterward....bruising, soreness, possible bleeding if it gets dry, that kind of stuff).

    I've already decided that if I ever end up going the g-tube/gj-tube route (I too have jaw issues, choking problems, slow GI motility which lets me eat only very small amounts, trouble keeping weight up), I'm going to get a tattoo around it. That's all there is to it. The damn thing will have to have some art.

  2. Thanks for the heads up. Your timing couldn't be any more perfect. I'm currently in the hospital waiting to get the gj-tube in later today, and have yet to see the anesthesiologist. This could mean an easier recovery and a neck and jaw that would be much happier. Much appreciated :)