Monday, April 26, 2010


Friday night, I was getting ready to go out. I had my nice sexy black skirt, with my nice black one-shoulder shirt, and my corset laced up tightly; all I had left to put on were my boots. My boots are knee high shiny black death traps. But they're ever so pretty, and even with the 6 inch heel, I still don't quite come up to my hubby's shoulder. I was about half way done zipping up the second boot, (which is tricky enough at the best of times, but made even more difficult with the addition of the corset) when I noticed I couldn't grip the zipper pull.

The smart thing to do in this situation is to stop, assess the problem, then continue.

That's not what I did.

I continued pulling the zipper pull, wondering why I couldn't grip it, until it was finally done all the way up. Then I stopped, looked at my finger, and realised I had torn a triangle-shaped, rather large chunk of skin out of my finger. It didn't hurt. At all. It was really strange. But quite disgusting at the same time.

I'm assuming this would fall under the category of "EDS causes skin to tear easily" but it's the first time I've ever done anything remotely close to that. It's looking really gross, so I'm keeping it bandaged up until it looks like it's starting to heal. It didn't even bleed though. Odd.

On another note... I was very excited for this past weekend, because I was going to a comic/sci-fi convention, and Leonard Nimoy was there. I wanted to ask him a question (which I would have if it didn't cost so much money to get within shouting distance).

You see... I posses a very rare talent. So far as I know, I am the only person in the world that can do it... I can make the Vulcan hand symbol (like Spock from Star Trek) ... But I can do it with both hands... and here's the exciting part... I can do it with both FEET too!!!

All I wanted to know from Mr. Nimoy, was if he'd ever met anybody else who could.

Everyone I know in real life thought I was completely nuts for wanting to ask him that, and also extraordinarily odd for knowing I possessed that particular talent.

Monday, April 19, 2010


Um... I'm a bit excited!

I received a phone call today from a wonderfully pleasant lady who works at the movement disorder clinic.

She gave me an appointment for 10:30am May 31st (which she so kindly booted somebody else out of). She told me she would go over my file with the doctor to see if she could get me in any sooner, as the doctor will be on call for the next few weeks. About an hour later I got another call. She has rescheduled me for May 7th at 2:30pm. (Which is WAY better than August, which is when normal appontments are being scheduled for)

Three more weeks.

I'll have my answer in three more weeks. (Happy Dance!)

Of course, as I had already booked my vacation for that week, and I had planned on leaving the province to go camping, I may have to rebook my holidays. Oh well, I've already pushed them back 3 weeks... What's another week? Especially if I can get a diagnosis out of it?

My pain levels are being stupid... Anywhere from a 2-3 on weekends when I am actually able to relax, to a 9-10 on weekday evenings after a full day of NOT RELAXING. It got so bad on Wednesday, Thursday, and Friday last week, I was reduced to a whimpering puddle of goo.

Friday night I went out to karaoke with my hubby, our roommate, my best friend, and a couple of her friends. I was fine for most of it, then I started twitching, and I dislocated my shoulder, reduced it and dislocated it again, about 4 times in the course of 30 seconds. The last time it refused to go back in, so I had to put up with a lack of blood flow causing numbness, and a pinched nerve causing complete sensory loss and/or excruciating pain, and an inability to move my arm. This went on until I got home, smoked my medicine, and went to bed.

My shoulder played a fun trick on me on Thursday too. It felt like it was almost in the right place, but not quite... So I poked it, prodded it, massaged it, and finally got it to go back where it should be. During all of this, the bones ground together, the connective tissues went clicking against the bones, the muscles spasmed, and I found that I have a rather large squishy spot, which on my other shoulder seems to be filled with... something... Muscles? Tendons? Ligaments? I don't know... Tissues of some sort. But on my bad shoulder, it just feels like jello.

Also... I dislocated/subluxed something in my coccyx last night... Don't reach for your iced tea without first setting down your book... Apparently, it makes all the difference.

Tuesday, April 13, 2010

Stability vs. Stability...

Since I've stopped the medication, I've noticed a marked decrease in stability, as well as a miraculous increase in stability... Confused yet?

Me too...

While I was on the pills, I noticed that my joints were more stable... as in they weren't dislocating as frequently.

When it got bad, and I was in the hospital, I had truncal instability, as well as a lot of "shimmying." It was horrible, but I wasn't dislocating anything... I just couldn't stand still, or stand straight... No balance, relearning how to walk with every step, etc.

When I was first off the pills, I still wasn't dislocating like I usually do, and the twitching wasn't so bad, but the longer I'm off them the worse the twitching gets, and the more unstable my joints are... I'm dislocating everything all the time again. Add the dislocations to the once-again-violent twitching, and I'm in a world of pain.

I don't know what's worse...

Not being able to walk, while keeping my joints in place, and having pain levels around 3-4 out of 10... Or being able to walk, while continuously dislocating everything, with my pain around 6-7 out of 10.

I just want to move only when I want to. And only in the direction I intend to move in... Without dislocating things... Not being in pain would be nice too.

I hate how the choices are between bad and different bad...

Right now my hips hurt so much... It feels like someone hit me with a sledgehammer... They keep subluxing. And my shoulders keep dislocating from the twitching, and I still have no balance... But I know where my feet are, and apparently that's enough.

I'm miserable... Like depressed-miserable... I just want to curl up in a hole.

Upon further thought, another thing I prefer about drug-induced truncal ataxia is the fact that it's predictable; I knew I was going to have to teach myself how to walk every time I stood up, I knew I would not be able to stand still... Whereas the twitching comes and goes... I can be fine for up to a couple of hours, and then BAM! I'll throw a glass of water across the room... Or hit myself hard enough in the face with a file/stapler/ruler/pen/coffee cup/phone at work that I dislocate my jaw...

Sunday, April 4, 2010

One Day

One day is all I had...

One day I was normal...

One day... I was just a girl...

I walked like a girl...

I played like a girl...

I forgot I was "sick"...

One day was all I got...

I've had to grow up again, but I am grateful...

For my One Day...

Thursday, April 1, 2010

Truncal Ataxia

It got so bad that I had my hubby take me to the emergency department.

The neurologists, doctors, and nursing staff thought I was an interesting case.

One of the nurses said I was scary... That I'm 22, otherwise healthy, and I presented with such a debilitating case, which came on so suddenly.

What caused the truncal ataxia? The medication I was on to relieve the upper chest/shoulder spasms. Apparently I am extremely sensitive to dopamine... The main ingredient in the medication.

So, I've been admitted to the hospital, and they've run numerous blood tests, and looked at my MRI results from before.

There was apparently an anomaly on the MRI, and I'm waiting to speak to the neurologist to ask what it is. Apparently it's in the wrong place to be causing any type of movement disorder.

The neurologist, after weaning me somewhat off the medication, and finding that I am almost miraculously cured, jokingly said that he should put me back on the meds and videotape me, because I had a "perfect presentation of truncal ataxia, and it would be beneficial to have video of it."

Once again I was the object of much showing off. I had, I believe, 2 neurologists, 3 med students, 2 MD's, and numerous nurses looking at me, checking my reflexes, asking me questions, and watching with astonishment as I jerkily; haltingly took a few unsteady steps. They also had me put my arms in front of me like a zombie, and close my eyes... Only to catch me a half a second later, as it became obvious that I had NO BALANCE WHATSOEVER WITH MY EYES CLOSED.

So far, since having my dose cut in half, the upper chest/shoulder spasms have not come back, and the neurologist would like to see them before I am discharged. I seem to be at a happy medium right now, except for some continuing instability and balance issues.

So I still have no diagnosis for my original problem, but the worst seems to be over, and that's a start.