Get ready for a long one!

Okay folks, get settled.

I have been to Stanford and back, in 3 days!

Well, it was an interesting, long, cramped few days.

But, now for the important news!

We met with Dr. Mignot on Wednesday. The first hour and a half was spent giving my history, and filling in or clarifying information my faxed records had provided. After that, the doctor came in. He didn't tell us what we expected to hear, although we should probably expect that now.

He basically said this. Given the information, he was almost 90% sure my LP would come back with normal levels of Hypocretin. He said that some certain things just didn't fit. And, he said the dreaded words. Conversion Disorder. BUT, not in the same way.

The pieces of info that don't fit are the fact that I hurt myself when I fall. Not that I hurt myself, but that I get hurt, that I don't protect myself. Both people with Narcolepsy and people with CD usually try breaking their fall, and I never have been able to. He also said that even with both sleep studies having things go wonky, they should show a sleep architecture of classic Narcolepsy.

But, because I do have the symptoms and the HLA markers, he wanted the LP done. So, down to the procedure room we went.

Now, I'm not exactly a skinny girl. It's well known that LP's are harder on overweight people. So, we expected a bit of difficulty.

The doc performing the LP started numbing the area after cleaning it. I've had problems in the past with accepting local anesthetics, but we always assumed it was due to swelling in the area being anesthetized. We found out that that's not the case. It took a while for the numbing mediation to even work a bit, but I couldn't feel my skin, so the doc started inserting the needle.

I felt everything. Not just pressure, like you're supposed to, but everything. The stress of the pain and having to curl so tightly made me have an attack. When I came back around, a doctor was holding my head and shoulders still. They had taken the first needle out, because it wasn't long enough. The second one they used was longer, and they were able to get between the bones, but not into the space to get the fluid. They decided to stop there, because it was hurting me so much and they couldn't get fluid.

They said that because the local didn't work, and they had a hard time getting into the space to get fluid, I'll need to have a lumber puncture done under sedation with the help of fluoroscopy. It's like a real time x-ray, and will show doctors exactly where to put the needle. Plus, because I'll be sedated, even if the local doesn't work, I won't feel it.

Because Stanford doesn't run the samples every day anyways, as long as we get the procedure done soon and the samples shipped back down, as far as solid proof, we're not set back any.

But, it was disappointing. It was hard to drive all the way down there, for them to say the same things we've heard here, and not even be able to have the spinal done.

Anyways, I'm trying to stay positive. Doctor Mignot said that even if the hypocretin level is normal, he still feels it's worth trying to treat the symptoms. He said three things.

Either it's purely Conversion Disorder, which he has seen before. He said even if it is CD, he would try to treat the symptoms. It's helped past patients and even me, if that's the case.

Second, it's possible that I have a combination of both. Much like people with Epilepsy, people with Narcolepsy/Cataplexy can have psychogenic symptoms, meaning that they aren't faking, but it isn't of a physical cause.

Third, it could be a mutation. He honestly said that. That we don't know enough about the human body to say something is or isn't. That maybe, tied in with my other physical conditions, this is some sort of mutation of the syndrome, and we just don't know.

So yeah. I know this is a little (okay, maybe a lot) jumbled. I'm sleeepy.

But, that's what happened at Stanford. I'll post tomorrow of the rest of our trip down to CA, including how we celebrated my parent's 23 wedding anniversary on the road!

~Bri

Ugg... =X

Today I had attacks at school. No like...falling and hurting myself, but a lot of floppiness was going on.

I didn't use the bathroom until lunchtime, then I saw that my patch had come off, which explained a lot. Mom ended up bringing me a new patch so. But even still, I missed part of first, all of second, and part of fourth.

Eh. I got to see my PT today, which was good. I missed my appointment with Kris last week, so it was good I got some time in with SOMEONE before Stanford. =D

I'm working with my teachers to get printouts of what I'm actually missing. It's encouraging to hear that either I'm NOT missing as much as I think I am, or that the teacher is just willing to really, really work with me.

So yeah. I'm off to go shower and do some homework and go sleepy-bye.

~Bri

Good Day

I had a good day today. I didn't nap at lunch.....still a bit bed shy =P

But I made it through five periods without falling totally asleep. I dozed some in first, but other than that I was good. Between fifth period and sixth period I went down to the nurse's office to go potty. When I was washing my hands, I had an attack. It wasn't out terribly long, but I was really cold and sore when I woke up. Because my neck snapped forward when I went out, my head started hurting.

Anyways, good day for the most part.

Ermm....Just trying to get homework done and together for tests. I have, within the next week, a test in Algebra 2, a test in Medical Careers, a test in Biology, and a vocab test in Sophomore English. Right now in Junior English and U.S. History we're just watching videos.

Yup. I cleaned my room tonight, straightened and organized everything to get ready for Stanford. I'd prefer coming home to a clean room, so it's one less thing to worry about. And I've already planned what I'll be bringing as far as clothes go...and I just earned my brother's DS so I can play that in the car.

Okay. It's bedtime now.

~Bri

NOT a good Monday

So I had an okay morning. It was actually fun.

And I took a nap at lunch. Which was also fun.

Except at the end, because I fell off the bed as I was rolling over onto my back. And, as my head has been telling me, it was the first to hit the ground. It's got a pretty good sized purple goose egg on the back.

And, I had to be taken to the ER to get checked out. In an ambulance. During lunch time. The trip through the courtyard on a gurney strapped to a backboard in a C-collar was....fun. It's always comforting to hear kids laughing at you. And no, I didn't assume this....the laughing shortly stopped after a boy said to a girl "Stop laughing, that's not funny, she could be hurt!"

Ya know.

Anyways, luckily I only missed 3 periods. And I'll be back in school tomorrow.

Okay now. I'll be back tomorrow to tell you how my day went =)

~Bri

I just want to SLEEP!

I had an episode of automatic behavior (fugue state) last night. I don't know what time it happened at. All I know is that around 2:30 in the morning, I woke up in the park and don't know how I got there. I was freezing cold and my knees were badly bruised.

I didn't have my phone on me, so I walked up to the fire station and knocked on the door. They had me come in, checked me out, and called my parents. I was having a really hard time staying awake, but at least I wasn't floppy much. Dad came and got me, and the firefighters helped me into my chair then into the truck.

Once we got home, Dad helped me into the house. Then bed. Mom helped me drink some warm tea, but it was so hot (to me) that I couldn't drink much. Warm tea was burning my tongue.

Woke up this morning sore, but safe.

We found out I went out my window. The screw in it was removed, but we don't know when it was removed. Dad says it looks like it's been gone a while. *sigh*

If we could just get me to sleep well at night, maybe it would fix this.

Realize, I don't just have automatic behavior that ends with 911. Sometimes I'll start homework without 'being there' and it turns out horribly. Sometimes, I'll just get up, leave my room, walk into another room in the house, and 'wake up' not knowing how or why I'm in that room.

But, it's the 911 episodes that make it here.

Yeah. Anyways, I'm going to go do some dishes then go take another nap. I MAY be baking cookies and bringing them to the firefighters for waking them up in the morning. I realize it's their job to help me and blah blah blah, but they still need sleep. And they were super kind.

SO yeah.

~Bri

Hi guys

I've been taking advantage of the extra time off and sleeeeeping. =P

Wednesday I had my meeting with mom, my counselor, and myself. We decided, ultimately, to leave my schedule alone until after Stanford. I've been talking to my teachers about getting caught up, and while I'm not slacking off by any means, I'm not doing much except keeping up with the current assignments. They all pretty much said we'd figure it out after Stanford.

I was also told to stop being embarrassed about falling asleep in class. As long as I am doing my best, and not just like, purposefully laying my head down without doing anything, not to worry about it. My counselor said my teachers *should* understand why it's happening, and that if they have problems with it to have them talk to her. I <3 her =P

Ummm....

Tomorrow is no patch day, so I'll be sleeping in.

=D

TTYL

~Bri

Oh, how lucky am I

I found out the reason my sister got her panties in a twist today.Not because she couldn't do something.

No no, it's because my siblings decided I didn't try hard enough today.

You know, it would be one thing for me to wake up, walk out of my room and go "You know what guys? I've decided today I'm not going to go to school. I don't care what you have planned or how it effects your life. I just want to stay in bed and be lazy."

Except that's not what happened. And yes, I woke up at 10 and seemed okay. Never mind I was still exhausted. I don't care what you saw, there was no way I was going to be able to make it through my classes and not fall asleep or have attacks. You have no room to judge whether or not I'm 'trying' hard enough. You have no idea what it's like to sleep for 10 hours, wake up, and feel MORE tired than when you went to bed, if that's possible.

I'm sick and tired of trying to defend myself against something that is only so much in my control. I don't know what to say. I don't know how to react when someones comes out with some sarcastic remark because they're angry at me.

I need help. Soon. I know that it's only a few weeks until we go to Stanford, and hopefully we'll get some answers for better medication to treat the symptoms. But that doesn't mean that the comments will stop, because they KNOW it's the best way to upset me. I just want it to stop.

Wow.

Great day for me. Still having problems staying awake so I stayed home today. Scratch that. I tried school this morning, but didn't make it out of the car. So anyways, for some reason, I've incurred the wrath of my older sister. No doubt she wanted to go to the mall/just out with friends but can't now, which sucks. I understand that.

However. If she makes one more comment about how lazy I am because I'm spending all day in bed, or how lazy I am because I'm "skipping" school, there's going to be some words said.

She's the one who gets up at 10 in the morning and goes to hang out with friends. She doesn't have a job, and she's not in school. No, she hasn't finished high school yet. She's supposed to be doing online, but she's putting it off. So she needs to keep her mouth closed.

Sorry. Rant done now.

~Bri

Funky day

Today was....weird. I had to come home early because I was having a lot of attacks/just falling asleep. I fell asleep on the bus to school, then slept in the nurse's office until school started. I was in 1st and 2nd, but not actually there. Then in second I needed to use the bathroom, and had a mini attack in there. All in all just a really rough morning.

Dad came and got me and brought me home, and I went straight to bed. This was at like....10:30. I didn't wake up until 5:30ish. And this is after sleeping on and off all day Sunday and Saturday, plus getting up late.

I don't know. I'm still exhausted...it's like my meds are doing absolutely nothing for me at this point. And I feel horrible because I'm still missing school even if I'm there.

But. We're just hanging in. =(

Bye for now, back to bed for me.

~Bri

Hey guys

So... busy week.

Um, school-wise, I'm sinking. Major. BUT, I'm in the process of working it out. Trying to find the right combination of naps, classes, and work schedules is hard. I've proposed a solution to my counselor, and we'll see what gets worked out. Mom is coming on Wednesday to talk about it.

Health-wise, I'm still doing okay. Aside from that scary attack on Tuesday and the fall-out, I've been failing at keeping myself awake in school.

We thought it possible I'd broken my hand on Tuesday. At first it had just hurt badly, but I had hit it pretty hard. Then it started swelling and bruising, became hard to move. So I went and got it x-rayed, and good news! No broken bones, just a BAD bruise.

As far as school goes though, I'm really struggling. I've been falling asleep in class, which is so hard for me. I've never, even since I started having symptoms, had this much trouble staying awake in school. And even if I don't fall asleep, I'll space out and not be able to force myself to re-focus on the task at hand. Working in groups helps, but my classes that are more individual cause problems.

So. Things are hard right now, and we're really just trying to keep our heads above water until Stanford. Only 18 more days until my appointment!

Bye for now

~Bri

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