And the Winner Is...?

I had a follow-up appointment with my neurologist yesterday, and I had to drive half an hour to see him, for a 3 minute appointment. GRRR... Anyway, I don't have epilepsy. It's still not tourette's. The neurologist has no other ideas. He says normally the next course of action would be to send me to the movement disorder clinic, which I've already been to, with horrible results.

He is going to recommend that my family doctor sets up a 24 hour blood pressure monitoring test, as well as a test to check if I have POTS (These tests would be for my unexplained falling down, and have absolutely nothing to do with my twitching).

The weather lately has been weird. It's at its coldest point this year so far, and it's still significantly warmer than one would expect for this time of year.

I have started taking Gabapentin (Neurontin) 300's 2-3 times daily, and they seem to be reducing the frequency and severity of my twitches. Which means I don't dislocate my shoulder every time I twitch now... Just sometimes. When I looked at the symptoms this drug is used to treat, it fits the symptoms I have; including pain and spasticity, as well as helping me fall asleep and stay asleep.

In other news: I feel like I was attacked by an evil clown. It feels like he tried to turn my spine into a balloon animal.

I have a new stupidest injury... I really wish I could stop accumulating these... Yesterday I was washing my hands, and I grabbed some paper towel to dry them off. While I was trying to dry between my fingers, I simultaneously dislocated ALL of my fingers at the base knuckle. It hurts to do anything with my hands today, and I've been dislocating and subluxing my fingers all day.

Lest we Forget

I never lost anyone to war.

But my family has served, or is currently serving in 3 different countries on land, at sea, and in the air.

My grandparents never talked about war around me, so I don't know what horrors they may have witnessed, or what deeds may have haunted them.

But the best thing they taught me was acceptance. Acceptance of people from all races, cultures, and backgrounds. They taught me not to judge others by the way they look. They taught me that all people are equal.

They taught these things to their children, their friends. They tried to rid their circle of hatred. They spread joy, and helped those less fortunate.

My grandparents are both gone now, they left this world peacefully, surrounded by family.

My hope is that all soldiers are so lucky.

Good News, Bad News, and My Own Stupidity

Bad news: My Cool Mom had a heart attack Monday night.

Good news: She's fine, and was released from hospital Tuesday afternoon.

Stupidity: I went to the hospital after work yesterday to visit her. I parked my car about 6 blocks away from the hospital, because it's the closest free parking. I walked with my cane. It took me about 15 minutes to get to the right part of the hospital, and to call the nurse desk to get a room number. The response? "Oh, she was discharged earlier today."

Which is a good thing, REALLY. That made me happy. But instead of a nice visit where I could recuperate from my walk, I now had to immediately get back to my car. About 3 blocks away from my car, I had to switch which leg I was using the cane for, thanks to an earlier ankle injury, but I still had to use my right hand for it. A block from my car, I dislocated my wrist and shoulder, and had to hobble back to my car without my cane.

I get into my car, and pull the door shut, resulting in THE WORST dislocation I've ever had with my left shoulder, and I screamed a bit, because OUCH. Dammit. PAIN.

On my way home, I stopped at a liquor store, and got some rum. While I was trying to pay, I was twitching so bad I thought the lady might call the cops on me for impaired driving (cuz sometime it looks like I might be on crack). Once I was home I had 2 large glasses of rum and Pepsi, smoked some medicine, and went to bed.

All of that was after an absolutely hellish day of falling down and dislocating my left ankle, knee and foot; as well as both hips, my left shoulder, and various fingers. I don't know how I make it through the day. Today, I can feel EVERYTHING that I went through yesterday. I just wanna go back to bed.

Cold Season

My hubby caught a cold... 3 weeks ago. He still has it, even though he gave it to me 2 weeks ago. I still have it, even though I gave it to my co-worker a week ago.

It isn't fun.

In weirder news: I had a dream.

That's not the weird part though. In my dream, I had fallen asleep with a dislocated knee. The way it was dislocated cut off all blood flow below my knee. When I woke up (in my dream) I went to the hospital, because it really didn't look right. They looked me over, found that all of the tissue below the knee was dead, and told me they had to amputate. My only concern at this point is the fact that I'm about to lose my memorial tattoo; a frog on my right ankle, which I had done on my father's birthday, 3 months after he passed away. While I was talking to the surgeon, going over all of the details about the procedure, I asked him if he could cut the tattoo off of my ankle, and use that patch of skin as the "flap" for my stump. He explained that since the tissue had been dead for so long, it would be impossible to reattach it.

So I asked him to cut my tattoo off anyway, and put the skin in a cooler, so I could take it to my friend, the taxidermist. He looked at me very strangely, before finally consenting with a sigh, and an "it's your body." Fast forward to post-op, and I am handing my best friend a little slice of myself, asking her to turn me into leather.

What I got back was a nice picture in a frame: My skin was stretched on a wooden circle, much like a dream catcher, and I had my memorial preserved.

Slipping Away

My sanity
My health
My self

They all seem to be slipping away.

I feel as though I am losing my mind, because of my health, and it's taking "me" with it. The twitching is horrible again. The first neurologists' words flow through me like an echo "psychosomatic... it's all in your head" as I throw things around the office, and get more papercuts in one day than is normal for a year. I find myself suddenly sitting on the floor, trying to put myself back together. I take out my cane, because I slept wrong and dislocated my good hip. I don't want people to look at me. I want people to SEE me. To know who I am on the inside. So they can remind me who I'm supposed to be.

I have a twitch-induced-stutter again.

My shoulder hasn't been in its socket for 3 days. The muscles spasm from overuse, in between the twitching, jerking, flailing which I am also powerless to stop.

It takes me an hour to get a glass of iced tea to where I am sitting. I have to stop twitching long enough to drink half of it before it is safe to carry it. I must concentrate with all of my effort to keep myself vertical, holding my glass with both hands, as I painstakingly inch toward my chair. I am still unable to ask for help if I know I can accomplish a task myself, no matter how long it takes me.

A day after taking my cane out, I put it away again. Is it because I feel better? No. My other hip is just as bad now, and the strain on my shoulder to use my cane means one more joint hurting, not one less.

Is that all I am now? A girl in pain? Or am I still in here somewhere, waiting for the time to come when the pain subsides enough to let my guard down?

Snarfle

It's my new word. I'm using it to describe breathing in and out simultaneously; also the sound made when one does so.

It's been happening a lot.

When I twitch, it feels like as my upper chest contracts, pushing the air out of my lungs, my diaphragm is sucking air into my lungs. It feels kind of like drowning. And choking.

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I made my mom a sweater. It's blue.

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I have received notification of my EEG appointment for 2 weeks away, and my follow-up neurology appointment for 2 weeks after that. I am once again cautiously optimistic about this whole thing. At this point any diagnosis would do. Or even a firm "it's not such-and-such" would suffice. The more things we know it isn't, the closer we get to figuring out what it is.

It Made My Day

I work at an auto body shop. We fix cars. We also arrange for rentals when necessary.

I never thought it would be so hard to find one.

It needed to be wheelchair accessible.

So I phoned my rental company, and asked. No luck. "Do you know who would rent one?" "No."

Then I phoned our back-up rental company. No luck there either, and they didn't know where to find one either.

Then I called the rental company we never deal with, and I couldn't find one there either.

So I went to my fall-back: Google.

And I found the ONLY wheelchair accessible van for rent in the city. I phoned them to make a reservation, and the price was staggering. Then I phoned the insurance company to make sure they'd cover the cost (they will). Then I phoned the customer with the good news. Then I phoned the rental company again, and confirmed everything.

I missed my lunch hour, but the thanks I got for going "above and beyond" was well worth my time.

I helped, and It Made My Day.