16 February 2010

Yay! 4 classes!

I'm getting out of my chair in 4 classes in school now! Yay!!

Today was wonderful. I had missed Thursday, but it was pretty easy getting the work to make up. I have a test in US History, which I'll be making up either tomorrow or Thursday. And, we did research in two of my classes (Biology and Junior English) for those classes' research papers.

My Ceramic pieces are looking nice too, my tiles are being fired and my tray is setting to dry now.

And, in other exciting news, this week my Aunt is here. I haven't seen her since I was weeee little, but she's here this week visiting. So she'll be coming over tomorrow, and then also Saturday. I'm happy!!

Okay. Chores and homework beckon. ew.


13 February 2010

Pics from today

Woodland Park Zoo

I had a lot of fun today at the zoo!!

Ash, Mom and I went. We got tickets through Great Escapes (LOVE this program)

We were there for probably 3 hours, and I didn't use my chair!
It was so cool!

Kinda rainy, which was sad because most of the animals were hiding, but cool too, because it wasn't so crowded.

I hope we can do this again sometime.

Pictures to follow!


12 February 2010

Wrap up

So a lot has been happening.

I'm not going to make promises to post more often, because I seem to jinx myself when I say that.
But I'll try.


Social Update

SO, I've been having super loads of fun.

On the 30-31, I went to N's house for a sleepover. SUPER fun.
AND I went Bowling!!! I haven't done this in like, 5 years. AND I went and saw Avatar in 3-D with her. AND, I didn't even bring my chair!!!

So yeah, I had a super good time. I've just been getting out more, for walks, to the store, etc. which is all good for me mentally.

So yup.

I'm gonna lump family into social today.

We put an offer in on a house in Summit, about 15 min. south of here.

It was accepted, and we move in sometime before/maybe slightly after the end of the month.

So. The 2 year wait is finally over. I will have to switch schools, but not until next year. My parents are going to make it happen so Ash and I can continue to come until the year is over.

I'm excited, I like their programs, but I'm also nervous, because it's just one more school.

So yup. That's what's going on!


School Update

So. I have some gooood news!!

I've been getting out of my chair at school!!!

Let me back up to January. Remember I said there had been talk about me getting out because of my CPR cert?

Well, Dr. H wrote a letter saying at my team's (me, my para, the nurse, the teacher) discretion, I could start exiting my chair and moving to a regular desk in classes.

Then my para, PT and I sat down and decided which classes we would start with. Before semester change, it was 1p and 3p. These were my two quietest classes, and the kids were more aware of my condition/why I used the chair. I got my CPR cert no problem episode wise, but was shaking like a leaf nonetheless, because we had to go up in front of the class to perform, and I have TERRIBLE stage fright. I'm not one to perform in front of people without the safety of my desk.

Anyways, that went well. My grades at semester were as follows.

1-P (pass)
2-E (no credit. I need to make up an essay, then I'll get the credit back)
3-A (my rock star class!)
4-C (yay!)
5-C (again, yay!!)
6-E ( no credit, no chance for recovery.)

For 6th period (Sophomore English) I'll need to do credit retrieval. 2nd period's credit retrieval consists of finishing an essay I was gone for at the beginning of the year.

Okay. So then my new classes for second semester, along with if I get out of my chair or not, follows.

1p- Ceramics: Beginner *
2p- Junior English
3p- Medical Careers *
4p- U.S. History
5p- Geometry **
6p- Biology *

*I am getting out of my chair, permission to walk around classroom.
** I am looking at transferring to a desk, will talk about classroom freedom as well later.

Geometry is a very warm classroom because the teacher also does Computer Programing. He uses the comps to teach, which is the best learning method I've encountered when it comes to math, but it means 30+ comps going in an enclosed space, no open windows, and all this equals stress and very hot.

So, for now I may start getting out of my chair to a desk, then if things go well I may be able to walk around the classroom. However, towards summer, the class gets super-hot again, and I may have to return to my chair.

So yeah. That's where we are. Doing super well in my classes!

Stay tuned for a social update!


Health Update


As far as episodes go, they've been WAY down, minor, and short.

I still have been having a few, especially at night, but mostly limited to a little weakness and brain fog, not full body.

We heard back from Stanford about my hypocretin levels, finally. So, they're within normal limits. While this isn't the news we were hoping for, it's not a lost cause. They said that there are a few things to keep in mind:

1) I'm the youngest person they have a sample on. While parents bring their children in to be diagnosed, few go so far as to have a spinal tap done, and few need it. The average age of samples is like, 28. These people have had the disorder since they were teens, but 10-12 years for the hypocretin in their body to break down. It may be that in 10-12 years my levels would be that low, but there is no way to know.

2)There is somewhere around a 10% rate of atypical patients. They may have the symptoms, but normal hypocretin. They may have decreased hypocretin + symptoms, but normal sleep study. And, they may have the HLA markers, symptoms, and response to treatment, but WNL sleep study and hypocretin. <--That's me.

3) Regardless of what this is, it's responding to treatment. So we keep treating.

I stayed home yesterday, and almost every Thursday in over a month. It's not me trying to get out of assignments, or tests, it's something wonky with my sleep pattern.

Sometime right before this all started happening, I stayed up too late on a Wednesday night. When this happens, it can be VERY hard to wake me up in the morning. This must have coincided with me not feeling well one morning, and mom deciding I could stay home. Thus, I was able to sleep in.

Things like this can majorly screw up my sleep schedule and take weeks or months to correct.

Case in point, for the last month, I've been getting home from school on Wednesday, struggling to stay awake long enough to get some homework done, going to bed at 5, waking up at 9-10-ish for dinner, then going straight back to bed. Even with all this extra sleep, come the next morning I'm impossible to wake up, and no matter how hard I try to drag myself out of bed, I just keep drifting back to dreamland, rather quickly. Then, I need to stay home, and the cycle continues.

The easy thing would be to try and break the cycle, but that would require me to mess with my (current, albeit bad) sleep schedule, which could create a whole separate issue.I don't even want to think about it.

Part of the reason this is so hard is because the stimulants are working- too well. Yes, I said it, the meds that keep me awake during the day and help my floppiness are not quite welcome in my body. We were told to expect some issues sleeping, and I'm having them. Dr. H did say at my last appointment in January that if at by my next appointment in March I'm still not sleeping well, we can discuss sleep aids. This would help me reset my internal schedule over a weekend, and that plus a strict bedtime/wake time (even on weekends) should get me out of this mess.

On to school!


It's been how long?

Way, Way, WAY too long. Sorry to all of my loyal readers, I know most of you use this as a way of checking up on me, and without this you're a bit lost as to what's going on in my life.

Don't worry though, I've not been gone because of a downward turn, but an upward turn.

I think I'll try a monthly update, for both January and up 'til today in February, so you know what's going on.

Okay, here goes.

P.S. Read the next post =P