26 November 2009

Long overdue

This post has been long overdue. And, a LOT has happened since my last post.


-My meds were updated to 20mg from 15mg. I was having such a hard time staying awake in school, and at home. I was getting about 14 hours of sleep a day, just not at the right times.

-I've recovered from the LP issues. The back strain and headache went away about a week after the LP. I'm doing much better now!

-We're still waiting for the results from the LP, hopefully those will come soon.


-I hit a rough patch in my grades for a while. They dropped to 3 E's and 3 C's, which is NOT normal, because of the sleep problems at school. I'm finally doing better, and they've picked up to 3 A's and 3 C's.

-I have my new para. She's absolutely wonderful.

-I've been able to get out of my chair during lunch each day for the last 3 days. It's very helpful to get that exercise in.

I have a doggy!!! Her name is Tessie, she's 40 lbs, and 18 inches tall. For the last 3 months we've been communicating with a local Australian Shepard breeder to get a puppy. We were planning on training this puppy into a service dog.
When we contacted them, the breeder told us that she had a dog available that was 2 years old, trained, and able to pick things up. We looked into this dog, and on Sunday we went and picked her up! We're doing a 2 week trial, but I don't think there is anything that could make her not work! She's so well behaved, and doing everything we needed/wanted.

So yeah. That's SOME of the stuff that's been going on.

Oh! Saturday we were able to go to Trans-Siberian Orchestra thanks to Starlight Children's Foundation. We had a BLAST! Except, I fell asleep. At the concert. In the middle of a number. If you've ever been or heard about them, you'd know how hard that is. Yet, I was tired.


Oh So Excited for Tessie!!

Bye for now,

06 November 2009

Headache Headache go away,

Come again...never.


Still have the headache. I've been getting as much bed rest as possible, but after a few hours of laying down, my back starts cramping so I have to get up. I sit for about 30 minutes with a heating pad on my back, then lay back down.

Except right now, because of dinner.

I don't know what we'll do if it stays like this. I mean, I know what is usually done, but =(

I have an I.E.P. meeting Monday. I hope that goes well, I'm sure it will.

I'm off to try oysters for the first time ever!


04 November 2009

I should change my name

I was thinking something like...If-something-can-go-wrong/awry-it-will.


SO I had my LP with the aid of fluoroscopy and sedation yesterday. Propofol was used again.

I don't know if I mentioned this at the time when I swallowed the needle last December, but. Propofol and I? We don't get along.

Last time, as the drug was taking effect I became the sleepy, girly version of the Hulk. I had to be restrained and given a higher dose, so they essentially knocked me out instead of the conscious sedation they were going for. It also took a while for me to wake up, probably due to the fact that they had given me a larger dose and because I have Narcolepsy.

Anyhoo, back to yesterday.

So, we get to the hospital at about 2, get checked in, and get taken back to a room.
The nurses were completely awesome, very nice, and put me and my parents at ease. It took a bit to get all the technical stuff figured out, but after all that, I got changed, got on the bed, and we got started. Per Stanford's instructions, they had to draw 60cc's of blood. In case you don't know, that's equivalent to 2 fluid ounces of blood, which is...A LOT.

Then they get everything explained, all the "You could die from this, we don't expect any complications, but we have to tell you" speeches. I get moved down to the imaging room, get positioned on the bed how I needed to be, and they began the procedure.

I was given the Propofol, and apparently had no issues going under this time. They were able to draw the fluid they needed, and my back looks good, no massive bruising or anything.

As I was waking up, however, there were issues.

I became combative, had to be restrained by a lot of people, then straps.
During that time, I stopped breathing for a few minutes. Mom was in the room for that =(
I also seriously screwed up my back.

BUT, and here's the twist, we didn't know I'd hurt my back until about 30 min after I actually was completely awake. I tried standing up to put my jeans on, and nearly collapsed. My entire lower back/pelvic area had shooting pains all through it.

So, then I was taken from the radiology suite to the ER, because they needed to be sure that there were no issues with my spinal cord. It's only a muscle issue though. So I was at the hospital until 8:30 this time...

We also THOUGHT that I had been lucky and escaped a post-LP headache, but I wasn't that lucky. So I'm home early from school today, (Thursday) and finishing this post. I'm trying to get some fluids in my body before I go back to my cave and lay flat lol.

Ahhh. So, these are the issues I've run into. Plus more at school, which I'm not even in the mood to talk about right now.

I'm open to suggestions on how to cope!!