29 September 2009

Down I go

Today, this morning actually, I had an attack while walking down the stairs. I hit my hand pretty hard, and twisted my back. I'm in a bit of pain right now =P


And I know I haven't posted in a while, nearly a week this time. I just haven't had the motivation or energy. I'm still getting caught up from missing 9 days recently.

Anyways, I've found out that I won't need to go off my medication for Stanford, because they aren't doing a sleep study. I just have to have the lumbar puncture done.

We'll be down there for like...3 days? Maybe a few more.

So yeah.


23 September 2009

K, so mayyyybe I did kiss a pig

Actually, I didn't. But, I probably put my nasty gloves against my mouth without thinking about it, and my gloves aren't the cleanest things in the world.

So anyways, I've been home sick. Since last Monday. Tomorrow I'm going to attempt school, but I don't know how it will go. I can't keep missing, especially since in October I KNOW I will be missing.

Anyways. So, bye for now.


16 September 2009

Still home sick

I'm still under the weather.....no, I didn't kiss any pigs, I'm just not feeling well.

I don't know if school is in for me tomorrow or not. Hopefully, but depends on what my stomach does. We'll see.

Bye for now,


15 September 2009

Sharing the love (or the sick)

So I'm home sick today. As is everyone else except my mom. Because she's made of iron or something.

Anyways. Friday was a good day, as was Monday. I didn't do anything this weekend.

Actually, Monday was a bit rough. I didn't have a para. Well, I did, but not for first period. Mrs. B was sick so for first period I had no one, so missed that class. Then for second and third period I had one para, and fourth through 6 a different one. Ah well.

Umm. Oh I contacted a local Aussie breeder yesterday. She was recommended to us by my dad's former boss. We've been looking at Aussies to self train for me, and she actually has some puppies. But, she also has two 2 year old females right now, and when I told her the situation and what we were looking for, she said that one of the females might be a good fit. She's already fixed, up to date on all shots, and has basic obedience and crate training. All of this helps us in the long run, because while any dog we get will need further training, this helps us a bit. So we'll be talking with this breeder over the next few days, as well as making some decisions here to see if this is the right choice at this time.


So yeah. I'm going to go drink tea and eat chicken noodle soup.


10 September 2009

UW Dermatology

So, I had my appointment with University of Washington Dermatology today. It went well. The doctor wasn't able to give us a solid answer, but he pointed us in a few directions. And he ended up referring us to a doctor at Stanford, because we'll be down there in October. So...yup.

One of the disorders he talked about is called "Periodic Nail Shedding" It's exactly what it sounds like. And the last paper written on it was in 1981. So, not much known about it at all.

Anyways, he did discuss nail care with us, what to do to help the nails grow back. He said that my big toe on my left foot has probably just had too much scarring to the matrix, so it's not likely to grow a nail back. One less to fall off I guess.

Umm...today at school was good. I have a para now, she's super nice. And I got to meet with my PT, and we discussed my evacuation plans in case there is a fire or whatever before an official plan is made.

Pretty much. Got caught up on my homework, which was kinda difficult, but it's done. I'm going to bed like...now.


09 September 2009


OMG. I've been OFFICIALLY diagnosed with Narcolepsy w/Cataplexy!!!

SO exciting!

So. My appointment with Dr. H went well, as you can see. He also agreed to the dose increase, I now have 15's and no more cutting to size needed. And he said something cool.

He did a paper a long while ago. In it, they studied kids who presented with full blown narcolepsy. Looking into their history, it showed that they didn't have symptoms present typical or all at once, like most doctors think it should. He said that the study concluded that kids who develop narcolepsy generally experience spotty symptoms, or the symptoms come and go at first.

So then he said that he doesn't feel that my symptoms are that uncommon in how they're presenting.

Okay. SO I'm excited.

And one thing I've been worrying about lately is the fact that when I'm 18, I'm no longer considered Pediatric with MB. But he said that because I'm already a patient, that he can continue seeing me until I turn 21. So that's one less stress.

Yay. My day is going so well, and I haven't even seen Kris yet =)

More later,


08 September 2009


So my day went like this.

Yesterday my nail (pinky on the left hand) came off.
It hurts. so.

I didn't sleep well at night, at all. Actually, I started bawling shortly after I went to bed for the night. I don't know why. My finger definitely hurt, but I'm used to it. I don't know. I think maybe the stress of everything with school and then the pain just got to me. Anyways, I didn't sleep well.

So. This morning I had a very hard time to get up. I ended up sleeping in for like, 2 hours. Then I made it to school in time for 3rd period.

My counselor got my schedule changed, so now I have first lunch. Nobody has been hired as my para yet, but Mr. A has been able to be with me the last few days and will be as long as I need him. Which is good to know, it takes some of the stress off.

I was able to leave 6th early enough to miss the rush of kids which rocks.

Then, I came home. And slept until 6-ish.

Umm, then ate dinner. =)

Tomorrow I have an appointment with Dr. H, and with Kris as well. I won't be going to school because of how they're spaced.

So anyways.


07 September 2009

I like Milk Duds.



So Friday was good. I still had trouble in 4th period, but at lunch time I was allowed to get out of my chair and walk around, so the little exercise gave me a boost.

I also got to talk to my counselor about changing my classes, and that's underway.

This weekend was good, I slept a lot. But yeah.

School tomorrow.

Yup. Gonna eat dinner, look over my Algebra 3 homework, and go to sleeeeep.

Night guys.


03 September 2009

September 3

Today was good. I'm tired, exhausted actually.

I had fun. But I kept drifting in 3rd and 4th period. I'm planning on communicating with my counselor via email to see if it is possible to change my class like I mentioned yesterday.

Still no para, and even though it was said A would continue working with me until one was found, that no longer seems to be the case. Today I had a different "helper" and tomorrow it may be him again or it may be someone else. I hope this is figured out by next Tuesday, because on top of the full class load with multiple challenging classes, I don't think I can deal with the stress of not knowing who my para is. I can feel it affect me during the day...I'm just hoping that that'll work out well.

Umm, not much right now, I'm wiped. I think I'll just go take a nap. Hopefully I'll feel better later after that.

Bye for now,


02 September 2009

First day of school.

So, my first day back this year.


It was awesome!

I absolutely enjoyed it, even with the little snafus.

The snafus include:
-No para. A took a better, more solid job, which I have no issues with, but it makes for a rocky start to school right now. First a new para has to be found, then I'll have to explain everything to them, and I'm hoping that I won't get paired with someone who will try to baby me. Because I can't deal with that.

-A few of my classes are not as accessible as I need (I can't get into a desk without some serious rearranging at the beginning of class; I can't see the board from the seat I can use) But I've already talked to teachers and let them know if I need help, or if things need to be changed. So it's all taken care of.

-I think I may need to switch my 4th period class to a different teacher. Same subject, but I may need to have my lunch first so I can take a nap and stay awake through the rest of my classes.

All my classes went well and it was good to know all my teachers are willing to work with me with whatever adjustments may need to happen with the wheelchair.

During lunch I took a nap and towards the end talked to my PT.

And then finished out the day. Went on a LONG bus ride because the afternoon driver is new and not used to this route. But she's super nice and funny. It's cool.

Umm, then came home, and didn't nap. But I did eat.

Boomer hurt his face crawling under the deck under the original concrete pad that used to come off the back of the house. It's all sore and he's been very crabby and skittish the last few days. We've been able to spray it with antibiotic spray, but he won't let us get close enough to actually wash it. If it gets worse we'll have to take him to the vet but for now we've got it under control.

Then we went to a friend's house, talked for a few hours, grabbed dinner, and TADA! home we are.

All for now,