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.

~Bri

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!

~Bri

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.

~Bri

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!

~Bri

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!

~Bri

Health Update

Okay.

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!

~Bri

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

Social Update.

I've been excited about this!

Okay, so I'm proud to say I've been able to go out, without parents or siblings.

I have this friend, N. She's...amazing, to say the least. And yeah.

Okay, for my birthday, she took me to get my nails done. I've never had it done before, and I was afraid, because my nails have been so gross. But, they've been better. SO, I got them done! They're SO pretty, and it was awesome to have that experience!

I've also been out to dinner with her, because neither of us could go to Winter Formal this year.

On Saturday, I went to her house all day. We watched movies, made cookies, and just BS'd. We also got our nails done then.

So yeah. I'm just....excited to be able to have this fun stuff.

~Bri

Health Update

I've been doing SO much better!

I switched my meds to Vyvanse over Christmas Break.

Easiest way to measure my progress is that

1) I've been going out without my chair. Grocery stores, Kris's office, that sort of thing. But it's progress.

2) At school, we're actually discussing me being out of my chair. And, I've been getting out during lunch.

I have to get certified in CPR/First Aid in Medical Careers in order to get my crossover credit, but that would be hard, because of my chair. Except, it may not be impossible. I've been talking to everyone involved (Nurse, Teacher, Counselor, PT) and all have been pretty open to me getting out to get certified, as long as I have Dr. H's permission. So I'll be asking next Wednesday, when I see him.

So. Yup. Things are looking good!

School Update

Hi there.

I'm doing better in school, sort of.

Independent Study Geometry:
I have P (Pass.)
I'm on track for next semester, when I'll join a regular class.

Junior English:
My current grade is an E, because I haven't turned in an essay yet. It's done, but not in yet.
Otherwise, it would be a B or maybe A?

Medical Careers:
I have an A-, and once some more work is in, it'll be a solid A.

US History:
It's currently at an E, but I'm working on getting it to at least a C by semester.

Biology:
I HAVE A C!!!! SO excited. Mostly because before Christmas Break, it was an E (not even CLOSE to passing.) AND, I have two more assignments to turn in, one of which is really combined assignment.

Sophomore English:
I have an E in this class as well. I need to have a discussion with my teacher to see what I need to do to just pass. I'm trying really hard to get caught up, but I need to know what all will be required.

All in all I'm doing better in the classes I wanted to get caught up in. Plus, I've made it to all my classes, unless I'm sick, like, normal person sick. Which is how I am right now.

And...I'm working toward getting out of my chair at school, which is exciting.

That's all for now.

~Bri

Yay! Happy 18th!

I'm 18 today.

Scary.

It was good, I had a lot of fun. I had to come home early, however, because I'm coming down with a bad cough....sad.

Anyways, doing well. Tessie is working out wonderfully, she's truly a god-send.

Need to go to bed now,

~Bri

Happy New Year's!

Happy New Year's!!

My resolution this year is two-part.

I want to write more, at least once a week.

AND, I want to keep up in school, and get out of the chair.

December Update

Hey all,

Something's been...off. I don't know. I haven't had the motivation to post, even though I've had plenty to post about. Guess I'm just having a bit of a harder time pulling myself out of this funk.

Anyways, we'll do this step by step, like usual.

Health:

• I've chanced meds from Daytrana to Vyvanse. It's an extended release form of Adderall. It's working wonders! I'm able to stay awake during the day, and actually feel awake. The only issues are me not being able to sleep as well, but we'll work on that. I did notice that while on the Vyvanse, because I'm not hungry at all, I've gotten a bit shaky. I just need to keep an eye on what I'm putting in my body, and if it's only a little bit, make sure it's nutritious.
  
• Still nothing from Stanford about the LP. I hope that comes soon.
• I had to fill out a Living Will and a Medical Power of Attorney yesterday. That was scary, mostly just because I HAD to do one before I turn 18.

School:

• Also going well. I continued to get out of my chair at lunch, and haven't had any issues.
• My grades ARE improving, even though the letter grades haven't changed, my percentages have gone up, which is good.
• I absolutely love my para. She's wonderful. She lets me do my own work, helps if I ask, and keeps me on task, which is something I did need help with. I'm so glad she's going to be working with me all year.
  

Social:

• I'm turning 18 soon!! on the 6th. I'm so happy/nervous. I'll be a legal adult! OMG.
• I've been getting out with friends, and doing things. I'm so happy I'm doing things again, it's making me feel more normal lol.
• I have plans to do things with high school friends. It's a welcome change!

Tessie:
She's doing so well!!! She's adjusted beautifully here. I can't make a move off the couch/chair/bed without her following me. She's still been alerting to my episodes (if they're stress or heat based) but since the meds are working, she's not had as much opportunity to show her stuff.

We've taken her out now many times with me in my chair. After finding the right size leash (3ft) she's able to walk with me without a problem. We still need to work on turning, and I don't think she was taken to pet stores much, as she's still nervous in them, but we're working on it.

Next Friday we're taken her to get groomed and to meet back up with her previous owner for two reasons. So she can see how Tess is doing, and so she can go over all commands Tess knows and make sure I'm doing them correctly. I'm really the one that needs to learn, not Tess.

We won't be able to get her Public Access Tested until May, so she won't be able to come to school with me until next year, so this next year will be spent getting her (and me!) trained correctly.

So yeah. That's most of what has happened in December. I've gotten to go out with friends. I have been out of my chair at school, and been fine. And I have Tessie!!

~Bri

Long overdue

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

Health:

-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.

School:

-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.

*sigh*

Oh So Excited for Tessie!!

Bye for now,
~Bri

Headache Headache go away,

Come again...never.

Please.

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!

~Bri

I should change my name

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

Yeah.

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!!

~Bri

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