Theme

Keeping up with my theme of "I'm not going to tell myself I can't" I went rollerblading yesterday.

I haven't done this since 2008.

The bike path is in horrendous disrepair, and there is construction. Construction means detours. Detours designed for people on foot, or on bikes. Detours most definitely NOT constructed with ROLLERBLADES in mind. I had to at one point choose between gravel and grass, and at another point I had to cross a VERY busy street, and go down a different VERY busy street, on the street itself, the wrong direction for half a block before there was a paved pathway to get back onto. (Thank goodness there weren't any cars turning right)

The round trip is 18km. I used to be able to get to the halfway point on rollerblades in 24 minutes. That was my record at least. Yesterday, it took me an hour and 45 minutes to get to the halfway point, and just over an hour to get back. Almost 3 hours for the round trip. But I made the whole trip. Only a couple dislocations... My hip went out for a few seconds, but went back in very easily, and my wrists and fingers were having problems saying "in" in my wrist guards. I didn't fall even once, and that's pretty good for me.

The weirdest thing though, is my hips and knees held up pretty well through the whole ordeal, and it's my shoulders that are bothering me today.

Only one incident of allergy-induced asthma attack, and that was as I was in my car, DRIVING home, when I passed someone mowing their lawn. It took me about an hour before I could breathe normally again.

Today, with my truncal/core instability issues (the "twisty" that hospitalized me, which is still present, but to a FAR lesser degree), it felt like I dislocated something in my spine. It went *SNAP!!!* then it went *click* and it hurt like crap, and I almost cried.

As far as the twitching goes, I seem to be doing less of it during the day, and more of it at night, but it's not as bad as it was. I'm almost at my full dose the clonazepam. I will be having a follow-up appointment which should be taking place in about 3 1/2 to 4 more weeks with the movement disorder lady, and a follow-up with my rheumatologist in the middle of June.

I RAN!!!

I ran FAST!

I didn't dislocate anything.

I didn't twist, sprain, or roll anything.

But it only lasted for about 30 seconds each of the 4 times I ran.

My calves hurt, which makes sense.

My upper back and shoulders hurt a LOT, which doesn't make sense.

But I ran.

And it was worth it.


I went to a bush party, and drank. A lot. The drinking lowered my inhibitions, and I decided to run. Not very far. I figured I'd go until I fell, or got my foot stuck in a gopher hole or something. Not so. I ran until my muscles couldn't do it any more, then I walked until I caught my breath, then I ran again. I haven't felt so free in a long time. It's convinced me more than ever that I need to get into shape, and start hiking again. I miss being free. I know it will cost me a lot, in the hours spent getting into shape, and the pain of moving things which would rather lay dormant. It might cost me a few days, months, or even years of being able to function, because I'm wearing down my joints, and stretching out my connective tissues... On the other hand it could grant me a few more days, months, or even years of being able to function, because I'll be in better health, with stronger muscles to keep me moving. It's a risk I have to take. If only to be free for a moment.

Horrible Pills, and Awesome Shoes!

Okay, so I've been on Clonazepam for a week and a half, and I'm currently half way to the dose I'm working up to. So far, I'm extra sleepy. As in, I just had a week off work, and I spent on average 12-14 hours in bed every night. Not so good for the joints.

I've also been falling a lot. Once, I was trying to get to the kitchen to make myself a glass of iced tea, and I fell at least 6 times in a row. Another time, I fell so many times, I gave up on walking, and just crawled. The falling is weird though. Sometimes it feels like a balance issue, or a blood pressure issue, sometimes it feels like a dislocation issue, and sometimes without warning, I'm significantly less vertical than a moment before, with no discernible cause.

A while ago I stumbled on a website for some awesome shoes, and I finally kicked myself in the pants, and bought them. I don't generally spend money on non-essentials for myself (yarn is exempt from this, because I make things for other people with it) and I already spent about $150 on new shoes and expensive insoles at the beginning of winter. Back to the point. I bought myself some Vibram Five Finger shoes. They are the best feeling shoes I've ever had. They allow me to feel more when I'm walking, so it's improving my balance, and co-ordination a bit. They also force you to walk like you would barefoot, which is good. That's how we were born... It's how we evolved... BAREFOOT. So yeah, that's me for now.

Oh, I also bought a back roads map of Alberta, because I am determined to go hiking this summer. DETERMINED. I will take braces, and ice packs, and heat stickies, and Benadryl, and bandages, and everything else I could possibly imagine needing. And I will carry it in a properly fitted backpack with hip straps to supplement the shoulder straps. And I WILL do it. (Right now I'm mentally sticking my tongue out at EDS... Mocking it the way it's mocked me my whole life)

Shiny New Bottle of Pills

I saw a spiffy new doctor today. She specializes in Tourette Syndrome, but is also a neurologist, and she knows more than a thing or two about movement disorders! Yay!

Based on my history, I do NOT have Tourette Syndome.

The preliminary diagnosis is either Myoclonus, or Dystonia.

Good news: They both (generally) respond well to Clonazepam, which is what I have been prescribed. I am starting on a very low dose, and over 3 weeks, I'll (hopefully) be up to a dose that will do some good. She will be setting up a follow-up appointment with me in about 6 weeks to see if it's working, or if we need to seek alternative treatment options.

While I was there, she also said she arranged for me to be tested for Epilepsy, to see if the Myoclonus (if that's what it is) is Juvenile Myoclonic Epilepsy.

She also believes that the diagnosis of Truncal Ataxia was wrong, and that it was probably generalized Dystonia which sent me to the hospital. Speaking of which, she told me that would have been more "normal" had I been prescribed dopamine inhibitors instead of a dopamine agonist. Just another thing that I don't do "normally." I seem to have the polar opposite reaction to a lot of things.

Ooh... Just read up on the side effects... They include "paradoxical reactions" so this time if I have the opposite reaction to the drugs, it will at least be expected. I think this bodes well for me.

P.S. Spell check is absolutely useless for medical terminology.

Stress Hurts

This week, I am supposed to be catching up on all of my work, and getting ahead a bit, because I'm supposed to be taking next week off. This week... All three days so far, the other lady in the office has been off sick. So I'm doing as much of her job as I know how to do, as well as all of my job, and a little bit extra, so I'm REALLY STRESSED OUT.

Stress makes me twitch more.

Twitching more makes me dislocate more.

Dislocating more makes me fall down more.

My pain level has been hovering around a 6-9 out of ten since Friday last week.

It's horrible. I can't do anything without tears welling up. I can't get comfortable at all. And it's mostly in my mid-lower back, which usually doesn't hurt at all. It's really weird, because I've been feeling really unstable in my back for the last week or so, almost like the Truncal Ataxia is coming back. I am anxiously awaiting my appointment with the Movement Disorder Clinic this Friday. Two more days until I see someone who might be able to give me answers.

So, at 22 years old, having been diagnosed with EDS almost 9 years ago, and showing signs of it since I was 7... I still haven't managed to find anything to relieve the pain, while still being functional. Yesterday, as soon as I got home, I drugged myself up and laid down with a heat pack alternating between my left shoulder, and 3 different spots on my back. I reheated the pack about 4 times, and I had to re-drug myself right before bed, because it was starting to wear off.

I managed to sleep through my alarm, and wake up at 7:29 this morning. I'm supposed to open at work, at 7:30... With the other lady sick, and the rest of the office staff living an hour out of town with horrible road conditions, I was still the first person at work at 7:40... I was amazed... In 11 minutes I went from horizontal in my bed to sitting at my desk with the computer turned on, and coffee mug in hand. It's a good thing I live about 20 blocks from work.

I bought new crochet hooks... They are awesome... They are for Tunisian/Afghan/Tricot crochet. I bought 2 sets, one for me, and one for my gramma. My co-worker borrowed one, and now she's buying a set for herself, and a set for her grand-daughter. It's like I'm starting a revolution! The only problem is, they aren't sold anywhere in Canada, so we've had to order them from Hong Kong via eBay.

Nothing much else is exciting, except I'm still considering wearing a corset to work to see if that will help any with the pain/stability issue.

Skin

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.

APPOINTMENT! YAY!

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.