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

*sigh*

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.

~Bri

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.

~Bri

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,

~Bri

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.

=D

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

~Bri

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.

~Bri

YES YES YES!!!

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,

~Bri

MMMMM.....Bed

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.

~Bri

I like Milk Duds.

Yup.

Anyhoo.

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.

~Bri

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,

~Bri

First day of school.

So, my first day back this year.

Awesome!

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,

~Bri

Hi There

I've had a good week. A tired week, but good.

Monday was spent with a friend I haven't seen in almost a year. And I haven't spent any real time with him for longer than that. He's like a grandpa to me, and he only lives about 5 minutes away. Unfortunately, he's sick, I've been dealing with my health, and I haven't had the means to get to his place. So yeah. Auntie C and I went to dinner with him then ran around helping him with errands.

Tuesday was spent at home, sleeping and doing other sloth-like activities.

Wednesday I went with Richard and Auntie C to Madigan in Ft. Lewis.
We accompanied him to his doctors visits, then we went to the PX and he got some things he needed/wanted. Annnd. Then we went to L&L for dinner. They have NUMMY! food.

Thursday...Auntie C and I went for a walk. Which was fun. Except it was hot, 86 as we were leaving the library.

Friday I went with Ms. E in the morning while she ran errands than we got coffee. I <3 her and was so glad to see her!

Today (Saturday) was no meds. So my bed and I had some quality time.

Pretty much.

School starts in 4 days!!!!

~Bri

Seattle Aquarium again

I got to go to the Seattle Aquarium again today, thanks to Starlight's Great Escapes. I had A BLAST!! I went with some close family friends, B, N, and Little Bug.

I didn't have to use my chair this time, which means that I got to see things I hadn't been able to last time. I got to get close to the Jellyfish Tube. I got to see the things in the tide pools. And I got to see the Flashlight fish!! We wandered around at the aquarium for...about 2 hours. Then we went for a walk and ended up at this sourdough bakery place. And....Oh! And we went to Ye Olde Curiosity Shoppe and I got these colored stones for Mom, Ash, Tori, and Auntie C.

Yup...

All in all, great great day! I truly enjoyed it!

Oh, and I'm excited for school to start. Pretty much.

~Bri

Good week

So, I haven't posted since Monday.

Monday was pretty much sleeping.

On Tuesday, I went to the store with my brother and got a new bigger backpack that will fit all my stuff for the new year AND have room in case I need to carry some books.

Yesterday, we (Mom, Ash and I) went to Stadium to register. We went early because I still didn't (until talking with Miss E.) know if I was doing full days or half days. Well, I'm doing full days. And I am SO excited with my schedule. I'm taking Junior English, Algebra 3-4, Biology, World History?, Medical Careers, and Sophomore English. The reason for two English classes is because I need the first semester of Sophomore English and the second semester of Geometry, so next semester I'll take Geometry in that hour. Pretty much.

Umm, today was good. Auntie C was over, she stayed the night. She's a close family friend, so it's cool. We didn't do much (actually, nothing, at all) today, except work on iTunes. Totally new to me, I've never used it before. Then in the evening after the parents got home, Mom, C and I went out. We went to a friend's house, did some coffee and other general running, and then came home.

Tomorrow we have stuff planned.

BTW, I totally forgot what I did Monday and Tuesday for the most part...so if I can remember I'll edit it later.

Bye now,
~Bri

Company Picnic

Hey all, sorry for the delay.

About the Company Picnic on Saturday.

Highlights include:

-Seeing K, our friend that lived in MN like we did, then her dad got transferred here about a year after my mom did, so now they live in the area! We see her every year at the picnic.

-Me pushing Dad up a hill in my wheelchair. Let me clarify...40+ man in a purple wheelchair with his daughter (who's secretly supposed to be using it) pushing him....it was a sight to see. But it was a blast. =P

-Playing Bingo since it was the only age appropriate thing for us to do. Everyone but our family friend that came with won. We played for 3 hours.

- The BEES. They were everywhere.

- Seeing Jeff Bezos, the CEO and founder of the company. As my dad and I were walking in from the truck after putting some things away, he was walking in with his family. He asked us how our day was, he and my dad discussed the brew they had in the Beer Garden this year, Dad joked with one of his children, and then we wished each other a good day and went back to the family.
With how many international companies is there that interaction between CEO and employee? Probably not many.

-Ash and I rode the tractor powered hay ride and reminisced back to MN and NY days. Ah, good times, good times.

-I was allowed to do a fair amount of walking, so my legs disliked me quite a bit.

And, yeah. That was the picnic.

Then...I slept on the way home.

And when we got home, as I was walking in the garage door to the house, Dad started one of his power tools to work on one of the cars. It is LOUD and startled me, so I had some leg weakness. It only lasted about 2 minutes and I was back to being fine.

Then yesterday was no meds so I basically slept or wandered around the house forgetting why I was wandering around the house =D

Yup.

~Bri

Tired

Why haven't I used "Tired" as a post title before?? Am I nuts? It's like....perfect.

Anyhoo.

My meeting with Kris went well, so that was good.
We talked a lot =)
After that Didi, (a friend up from Oregon) Ash and I went to the mall and hung out. I got some stuff for my room to help me keep organized this year. A whiteboard, and a paper organizer.

And then...today? Today I actually got up kinda early (for me anyways.)
Didi and I went for a walk. Then when Mom and Dad got home, I went with Mom when she took Ash and Didi to the boat.

And we had RAIN!! I mean like....North Dakota type rain. It was wonderful!

Then...we went to surprise a friend we haven't seen in like...2-ish years?
She used to be our downstairs neighbor, then she moved to California, and now she's back up here! So we surprised her tonight, and it was really good to see her again!

Saturday is my parent's company picnic. I'm excited because we get to see a friend we see only yearly. She was our (mine and Ash's) best friend in MN. Her dad worked at an Amazon partner there. Then, when we moved here, we thought we'd never see her again. Except her dad got transferred here too, so now we see her at the company picnic every year!!

So yeah. Oh, and a little good thing that happened. I got an email from a girl who is having some problems, and she reached to me for help after a friend recommended my blog.

That was cool, to know my blog is making some sort of impact somewhere.

So yeah.

~Bri

Going to see L!

Today I'm going to see N and L. =)

It will be funn.

Later I have my appointment with Kris. I'm excited 'cause I didn't get to meet with her for my last scheduled appointment. It was too hot.

Yesterday and Monday....hmmm. What happened?

Okay. Monday Ash and I didn't end up going on a walk because it started raining. YAY for rain! I think the dogs forgot what it was =P

Tuesday...I slept. Lots. I didn't get out of bed until like, 1. And then last night I went to bed at 8. Then woke up at midnight. Then went back to bed at 2 AM. Sleep was difficult for me for some reason.

so. Yeah.

Bye now.

~Bri

Med update.

So....

Yesterday, I tried an up-ed dose of meds. I went from a 10 mg/9 hours patch to a 15 mg/9 hours patch. Just for a day to see if it would go better this time, because we tried last time with....scary results. We aren't sure if the bad attacks were caused by the higher dose, or if it's because of high emotion at the time, but anyways, we've waited a while before we go up.

It turned out great though. I was still in need of a nap, but between the nap and bedtime I didn't feel completely exhausted like I've been for the past month or so. It sucks that my EDS is getting worse, but at least the first day on new med dose didn't absolutely overtake my body.

Today Roo went home, and I didn't use meds. So I was more floppy, more tired. But even with that I was able to get some organizing I've been wanting to do done.
I was looking at my old journals/notebooks from previous grades, and found one from when I was in 6th grade in MN. It was fun looking at it and seeing how my writing style and penmanship have improved.

And. Ash and I are going to go for a walk tomorrow, so. I'm happy about that.

Yup.

~Bri

Today was good =)

Roo is over again, he's staying until Sunday.

Today I had a rough morning...Mom says I wasn't talking clearly when she woke me up to put my patch on. I also slept until like, noon, and I didn't feel all that great waking up.

Eh.

Anyways, Ash and Roo and I went on a super long walk!
(Not the best choice in hindsight, I had a few episodes of weakness and was DEAD tired when we got home..)

We had fun though. I got some books at the book sale, and then we went to the park.
We taught Roo to go down the slide!!! He loved it lol.
He gets down on his belly, army crawls onto the slide from the platform, then does this little extra push and goes down. SUPER CUTE!!

heehee.

Now, bed time soon. I'm exhausted.

~Bri

I need some room to fly

I understand, Mom worries. It's her job as a mom to worry.

But I need some room to fly.

I don't want to feel like I can't do something because it'll upset her or whatnot.

Today, Ash and I walked to the library. It's cool, I'm on meds, there wasn't a lot to worry about. Mom and Dad came to get us on the way home. I wanted to walk home. Ash had ridden her bike down, which meant that she'd have to go home alone.

We asked if we could stay. Mom said we couldn't because she didn't want to have to stress.

I understand. If I'm not at home, then things can go wrong and Mom won't be able to control the situation. I understand that when or if I have an attack, 911 is usually called and it's stressful and a hassle.

I'm doing better. Period. Not maybe sorta kinda. I've not had to deal with any serious incidents in a while, and either have they regarding me. I had an attack yesterday and even that ended fine.

I'm not trying to make her life harder. I just want some freedom and independence.

More and more frequently I've been getting this feeling about everything from my health to school. I want to be able to make my own decisions. I want to have the ability to mess up.

I just don't want it to turn into either, I have my family's help or I don't. I don't want it to be that if I make my own decisions, I won't have their support, or it won't be freely given.

I don't know. I'm feeling kinda caged right now....

~Bri

Sleepy time very soon

I spent the day at Ms. E's. It was super fun, and we got a LOT done. Yay for her.

I DID scare myself into an attack while on meds though.
It was full body, but didn't seem to last long. I bumped my elbow but no major damage.

So yeah. Tomorrow I'm not going to B and N's because they've got plans. But that's okay, I'll get to sleep in tomorrow =)

Now....sleep.

~Bri