From the Lips of Me

Traveling Red Dress Project

2012-02-12T07:42:00.000-08:00

I haven't blogged in AGES. Between school, health, and family...I simply haven't found the time.

I'm doing great in school. I'm doing fine health-wise and though this week has brought some episodes, as Dr. M says "Sometimes life gets hard."

And I'm doing great at home...I'm loving being an Aunty, and I love spending time with my family.

However, what inspired me to write today was none of the above. What inspired me to blog again was the Traveling Red Dress Project, which you can read more about here.

I want to find a red dress. I want to wear one and go to the park, or school, or the store and JUST LIVE.

I'm not a spontaneous kind of gal. I plan my days very carefully to avoid having episodes or falling asleep in public. Unfortunately, as a dear friend said yesterday, "With Narcolepsy, if you don't plan breaks, breaks plan YOU." And he is so, so right. I need to take some time to myself.

And what better way to do that then with a fantastically absurd red dress??? I don't know.

So here is my hope. That someone, somewhere out there has a red dress that wants to help someone out of their funk, and then I'll do the same!

If any of you have a plus-size dress (like, 20-22) I'd love to wear it and feel pretty and ridiculous and completely free.

Thanks,

~Bri

Been a while.

2011-05-03T09:14:00.000-07:00

Life has caught up with me, or interfered (depending on who you talk to.) Either way I haven't been on here in forever, and for those of you who use this blog to see how I'm doing, I'm sorry.

But, I have some exciting news I wanted to post about!

Later this week I'm meeting with a local school that offers a way for me to get my HS diploma, as well as getting a degree in a field of my choice, but since it's still public schooling, it's free! So we're hoping that program will accept me.

Annnd, I got my Prom dress!!!

See

This is for Starlight Prom, and it'll be my 3rd year going, (Year 1, Year 2) but my first year I got a gown, so for me, it's like my senior prom =D Plus I won't be using my chair this year at Prom either, because my older brother and his GF are coming with their car, so even were something to happen, it's not a big deal! SO EXCITED!!

That is all.

~Bri

Update: Health

2010-12-07T09:42:00.000-08:00

Physical Health:

Since my last post, I've started seeing a new doctor. She's a neurologist that specializes in sleep. With seeing her, I've also been put on new meds. I was put on Effexor XR, and antidepressant, to help with the cataplexy. It's doing it's job, physically, but mentally, it's thrown me for a ride.

I'm also now on a sleep medication. About a month back, I had an episode of sleep walking. I ended up going out my window and down the road. A neighbor called 911, and I was treated on-scene for cold and hypoglycemia. Because of that, and my history of "fugue states" she put me on a med used to treat sleep walking, Klonapin.

It works...I can finally sleep through the night, it feels like. But it makes mornings hard. And I've been having problems with severe dizziness since I started the drug. A lot of days, I'm so dizzy I can't do more than stay laying flat or sitting up slightly. And it's like that most of the day, regardless of whether or not I eat, if I drink a ton of water or almost none, it doesn't seem to matter.

Mental Health:

This has been harder. As I said, the Effexor has been helping with cataplexy, but it's not been helping at all with my mind. I've been depressed, and I didn't quite realize the depth until Tuesday last week. I tried to run away from home. This wasn't me being a dramatic teen, trying to show my parents or anything. I literally got so depressed and stressed I felt like the only way out was to get out. A lot happened, which I don't want to go into here, but I ended up in the Emergency Room that night. I talked with a crisis counselor, and asked if I could get help. I didn't need the kind of help Kris could give me. I was so depressed that night I felt like there was more going on than I or my family could deal with.

Unfortunately, I was told that although there were beds available, I would not be placed in one that night, due to having Narcolepsy. I hadn't made a serious attempt on my life, in the sense most people think of in suicide attempts. But for me, running away is like trying to take my life. I had nowhere to go. I didn't have my medication, which would have left me with terrible withdrawal symptoms and completely at mercy to my condition, had I even made it through a night. And I was told, bluntly, that had I tried to make an attempt on my life, it would not have gotten me into a bed. I would have been fixed up in the Emergency Room, and sent home just like I was Tuesday night. I didn't realize how screwed up our health care system is, but Tuesday showed me.

I'm doing better, both mentally and physically, and have an appointment with my sleep specialist, Dr. M, on Friday. I'll know more then.

More to come...

~Bri

Update: School

2010-12-07T09:33:00.000-08:00

Okay...where to start?

Since I last posted, a lot of stuff has changed education-wise.

First, I started at NP, an alternative school in my district. Things seemed to be working out there. The classes were small, and I was on track to graduate. The work was independent, which I like, but I also missed my friends from FP. I was only in school on campus two afternoons a week, and even with that, I was having a hard time managing making it through the day, if I even made it to school.

So...I started thinking again about my other options. I knew I could just struggle through the year, but I don't thinks that's whats best for me health wise. So I looked into getting my GED.

For me, it is an internal struggle. I have worked SO hard over the last 4 years to be able to graduate with a class (forget MY class, I just wanted to walk) but even that seems too far out of reach right now. But the more I think about it, the more I realize that it's not that I'm giving up. I'm taking steps to finish my education. Can it make getting a job in the future harder? Yes. Can it make getting into a college harder? Yes. But I don't feel like the stress is good for my body. I don't want to have to "just push through" this year. I want to feel accomplished when I get my certificate saying I completed my high school education, whether that's a GED or diploma.

So that's where I am as far as school is concerned.

More to come...

~Bri

Starlight Luncheon

2010-10-27T23:01:00.000-07:00

I was asked to speak as a Starlight Teen at the Annual Starlight Luncheon on October 18th. I gladly accepted and had a blast! This post will end with some pictures of my outfit (and Tessie) and an article of the luncheon.

http://www.pnwlocalnews.com/east_king/red/news/105361538.html

How long overdue?

2010-09-25T19:59:00.001-07:00

*
SOOOO Long.

Okay, maybe I'll get back into what I did with the rest of my summer later, but for now, I'm just going to update on the past week.

Last Thursday, I went down while I was taking a test, during my lunch period. No big deal, thought everyone, until I started having problems with my breathing. I was experiencing cycles of hyperventilation, followed by periods of apnea. The problem was, that it was taking a looong time for my body to kick back in with that whole breathing thing.

So medics were called, and I was taken to the hospital. Okay, we've dealt with new things before. Only this time, it was baddd. I was intubated Thursday at about 1 PM, and I woke up out of the sedatives on Friday morning at 8. My whole day, gone.

I got out of the ICU at about 9 Friday night, and was released from the hospital on Saturday morning. Because the periods of apnea were so prolonged before the intubation, I actually suffered from something called atelectasis. Basically what happened is because there wasn't enough pressure in my lungs, the alveoli started to collapse. That, plus the massive amounts of Propofol I was on (twice the maximum amount ICU pumps allow) kept me home for a few days.

On Monday, I experienced this again, while leaving my doctor's office. Once again I was intubated, only they didn't sedate me well, and as I came out of an episode, I pulled the tube out about 30 min after it was put in. They treated me on O2 for a bit, but let me go home that day.

Then, again on Thursday I had another bout of this that sent me to the ER. This time, the ER doc basically employed a "wait and see" policy. She decided not to intubate, and just used an Ambu-Bag when my breathing stopped. This helps decrease over-all stress levels, and the episodes resolved on their own.

So. When I was in the ICU, a sleep specialist talked to my parents, and they agreed I need to be on something for the Cataplexy. We don't know that this is what's causing the breathing issues, because those seem to be tied closely to stress, but we do know that since I've been on the anti-depressant, my regular episodes of Cataplexy have already cut back, and I just feel better in general.

School is going well, for the most part this year. I've missed quite a bit, I'd say 2-3 weeks already, but I'm staying caught up in my classes, and I really enjoy all of them.

I'm taking Senior English, Freshman English-Credit Retrieval, World History, Civics, Anatomy and Physiology, and Sports Medicine. So.

Yup. That's what's been up the last week.

Okay, I'm gonna go now.

~Bri

*Pic from the ICU after extubation.

July Update thus far.

2010-07-29T10:18:00.000-07:00

Social: The first week of July, siblings were gone on their summer vacations over the fourth, so Mom, Dad and I were at it alone. I stayed with some friends during the day for the week, so Mom and Dad could work. I really enjoyed the time away from the house, it felt good to get out. I've also stayed the night at N's last week, and we did some 2+ hours of exploring the water front. Her mom was on call and her dad was running on the water front, so was very close just *in case* but all went well and I had a blast!! I've also spent some time with Ms. E so that's been fun.

School: What school?? It's summer break =P

I did go get registered at FP, and am excited with the classes I'm signed up to take next year. No math or science, but I'll manage! Also, instead of trying to fight for a para without me being on an IEP, the school has agreed we'll see how Tessie does first. Now, she's not been in a school setting full time, but we expect her to do very well!! This is what we've been training her for, so!

Health: On July 1st, I had a fugue state and wandered a couple blocks from the house. Due to our good pre-planning of going to the fire station and introducing me, my condition, and Tess, the situation was handled well by the responding fire fighters. I was already alert when they got there, so they put me in the ambulance and took me home. Their only concern was my blood pressure, but I assured them it's not uncommon for it to rise, so they released me.

On July 8th, I had a second fugue state. Both days I was home with sisters, but had been sitting outside, and both were severely influenced by being in a new house and the heat.

Unfortunately, on the 8th, it was about 90 degrees out, and the asphalt was even hotter. When I collapsed, I landed on the roadside and got 2nd and 1st degree burns on my arms and legs. This time, I was taken to the hospital, and treated and let home. For the first time, no one had called my parents first, so it was a completely new experience. Not only was I at a new hospital, I had to deal with the nurses, admissions nurse, and all that alone. I called mom and dad as soon as I was allowed, and didn't DIE...but I'd rather never do it again lol.

I've been doing well still, and the few spots that got 2nd degree burns are coming along in healing. I also got a medical alert necklace that doubles as a USB, so I can store more detailed info on it.

Family: As I've said, siblings took off the first week of July, so Mom, Dad, and I finished cleaning the old house ourselves. We got it done and never have to go back!!

I liked the time just the three of us got to spend together, especially the time Mom and I got. I know we used to, and still do to a point, spend a lot of time together at doctor's visits, tests, and hossy stays, but it felt nice to go to garage sales, and shopping, and do "normal" mom and daughter things.

June Update

2010-07-29T09:56:00.000-07:00

Social: Not much happened.

School: The end of school went well. I was able to finish a ceramics project for my teachers. I made 11 cups, glazed them in a deep blue on the outside and a golden yellow on the inside, then painted in gold on the outside of each one "SHS" with a paw-print. The cups were a hit, and everyone was excited to receive theirs. I had a lot of discussions with my teachers. All of them congratulated me on job well done this year, on keeping up my grades and staying focused despite the challenges I did face from the N/C. I'll really miss Stadium, but I'm glad that I had the time there I did.

Health: So, health-wise, things were finally more stable. The meds leveled out in my system which helped. I also started birth control to help level out my hormones before and after my period. I was having horrible symptom, anger; anxiety; and it wasn't helping with my episodes at all! Luckily, since I've been on it, I've not had the same emotional roller-coaster, not just the week before and during my period, but all month is better.

Family: We did get the house in Summit, so much of June was spent going from school, to packing at the old house, to going to paint at the new house after mom and dad got off work and during the weekends. It was very, very hectic. And towards the end of the month, Ash, Tori, and Bub had trips planned, so the very last bit of cleaning the old house was left to Mom, Dad and I. We got it done, with very few episodes on my part, as I would take time to sleep if I needed or cool down if I needed. The last week of June, we started living in the new house, OUR house, full time.

May Update

2010-07-20T09:50:00.000-07:00

Social: Prom was fantastic! I had a blast. Toward the end I had an episode, and had to go to the ER at the paramedic's requests. I was also, after prom, asked an amazing thing!
I was asked to write up "My Story" for a Starlight newsletter. I was also asked to be a guest speaker at the Starlight Luncheon in October, both of which I said yes to. !!!!
I also got to go to a friend's house a few times and stay the night, which was cool for realizing I could handle my condition outside of home, without family around. We also got into the house in Summit and started packing.

School: School went well the first half of May, but it was complicated. I was out of my chair full time in all my classes, unless I deemed it a bad day, or my para was uneasy for whatever reason and I stayed in my chair. Still, my grades dropped because my meds stopped being effective at the dose I was on. I also had three bad episodes, which I'll go into more in health. I still kept my grades above C's in all but one class, my junior english class.

Health: Okay, so this sucked health-wise. I had to bump my meds up to 50mg because at 40, I started falling asleep in class towards the end of the day. With finals coming up, I needed as much class time as I could get. On May 8? I had an episode in Geo, just got too hot, and fell out of my desk. I landed on my left shoulder and bruised my collarbone. It took about a month to get over that, but all good now. Then, towards the end of the month, the 18th and 19th, I was in the middle of my med change.

The 18th, I went out to the water fountain outside 3rd period to fill my water bottle. I slipped on some water, scared myself, and hit my head when I went down. I was taken to the ER for a CT scan, and let go with just a goose-egg. I was taken to TG, because I'm no longer young enough for MB, so it was a bit new. But it went so well, we weren't concerned.

Then, the 19th, things were a bit more serious. I had a sub para, and the school nurse and her assistant were also out. Now, I'd worked with all 3 subs before, so I wasn't concerned for the day. However, after 3rd period, I was using the bathroom and had an episode. During the episode, I started having shallow breathing. This is something that's happened before, but the sub nurse apparently thought I stopped breathing, and said she couldn't feel my pulse. She began CPR. To restate, I DID NOT stop breathing. Fortunately(Un?) she wasn't pressing hard enough, and didn't break anything. When the paramedics got there, they put me on O2, ran an EKG, and weren't concerned, but took me to the ER to be checked, for obvious reasons. Things were a bit more hectic that visit, with multiple IV's started and more tests run, but things still went smoothly.

I also had a fugue state on the 24th, the Monday after. I was given Narcan when the paramedics were treating me because I was in a very deep episode, and my breathing was again shallow. Even though the responding medics knew me, they hadn't ever seen me so out. We think the seriousness of the episodes was due to med change/finals/moving stress.

Eventually though, my meds leveled out and things got back on track towards the end of May.

Social Update

2010-04-21T21:23:00.001-07:00

So, we're not in the house in Summit yet. Turns out, they needed to fix the septic system, as it hasn't been touched since 1957. But, a new one is finally in, and we're told we'll be signing paperwork on Monday. This is like, the 6 billionth time they've said that, but it sounds like they're for real now.

I've still been getting out. It's been good to have breaks from family, even if only for an hour or so.

Prom is on May 1st!!!!!!!!!!! SOOOOO excited for this.

Going to Starlight Prom again this year, and I can't wait.

Urm, again, I'm pretty tired, I think this is it.

~Bri

School Update

2010-04-21T20:54:00.000-07:00

Okay. Like I said, I've been getting out of my chair in all my classes. Even Geometry hasn't been a problem. I've been filling my water bottle with ice-cold water in the nurse's office before class, so if I get too hot I have a way to cool down.

My classes are all going well. My current grades are....

1) A in Ceramics-love this class, absolutely the best way to start the day.
2) E in Junior English- also love this class, but don't love the way she does grades. She enters assignments before it's due, so it looks like you haven't turned it in. So, my grade, which in all honesty would be like, a C, is currently an E, because of those phantom assignments.
3) A in Medical Careers-rocking this class.
4) D in US History due to missing work, in the process of fixing this.
5) C+ in Geometry, and this grade is on the rise as my teacher enters back work, so it should be higher in the next couple of days.
6) B- in Biology, which is SO cool!!! Yep, and it's going to be higher for this as well, once I get a 6 point assignment in.

Urm...I think that's it for now...

~Bri

Health Update

2010-04-21T20:32:00.000-07:00

Okay...so, lots since February.

I'm out of my chair in all classes in school. I've been walking around the school for minor trips (across the courtyard, from one side of the school to another, etc.) but still have to use my chair in the hallways.

My sleep schedule was fixed, for a while, but it got screwed up again. When I stay up too late or sleep in, it's just bad for me. I need to get better about regulating it.

As far as episodes go, I've been doing well. I haven't had a full body episode in so long, during the day. I have had some at night, along with a minor increase in sleep paralysis/hallucinations, but it doesn't seem serious, though I'll be bringing it up with my doc.

Emotionally, I've had a few more struggles, but it's for the best. I've been working on leaving counseling, as I've met all my goals again and again. Kris and I see each other once a month now. Between these times, it's gotten tense, and yes, I've had some meltdowns. But at the same time, it's been good. I'm actually learning how to deal with struggles, and have made strides in making Mom and Dad understand where I'm coming from. It's been hard, and sometimes feels like its 2 steps forward, 10 steps back, but I know things are improving.

I've been going on walks more and more. I've gone on 5 unaccompanied walks, 3 of those with Tessie. Mom and Dad have been really cool with it, as long as I check in every 15 minutes, and only go to the library, or they know the route I'll be taking. It's worked so far, and I hope it will stay like this.

Umm...one thing I've noticed more and more lately is that my heart has been giving me some trouble. I don't know how serious it is, and my parents have been a little worried about making a big deal of it, I think because they're wary about going down a huge road of problems again. Every day or so, my heart seems to keep skipping beats. It's extremely unsettling, but I had the school nurse check me out, and she said while I may be experiencing these symptoms, my blood pressure and pulse have been fine and my heart sounds fine (she's checked for the last few days) and it's been on an off, so it probably isn't that serious. Still, I'd prefer to get it checked out, but I was told it's probably best to wait. This is one of those, "Do I rank higher because it's my body, or do they rank higher because it's their insurance" things. Anyways, time will tell with that.

So umm...I think this is it.

~Bri

Hi again

2010-04-21T20:29:00.001-07:00

It's been....a long time.

So anyways. Updates by section, you know the drill.

Yay! 4 classes!

2010-02-16T20:54:00.000-08:00

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

2010-02-13T20:28:00.000-08:00

Woodland Park Zoo

2010-02-13T20:08:00.000-08:00

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

2010-02-12T14:32:00.001-08:00

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

2010-02-12T14:25:00.000-08:00

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

2010-02-12T13:59:00.000-08:00

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

2010-02-12T13:46:00.000-08:00

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?

2010-02-12T13:43:00.000-08:00

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.

2010-01-07T14:35:00.000-08:00

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

2010-01-07T14:27:00.001-08:00

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

2010-01-07T14:02:00.000-08:00

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!

2010-01-06T22:21:00.000-08:00

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!

2010-01-01T00:27:00.000-08:00

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

2009-12-27T11:52:00.001-08:00

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

2009-11-26T17:24:00.001-08:00

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,

2009-11-06T17:58:00.000-08:00

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

2009-11-04T13:14:00.000-08:00

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!

2009-10-22T19:11:00.000-07:00

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

2009-10-14T20:41:00.000-07:00

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

2009-10-13T22:09:00.000-07:00

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

2009-10-12T18:23:00.000-07:00

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!

2009-10-11T12:02:00.000-07:00

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

2009-10-09T22:04:00.000-07:00

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

2009-10-06T16:28:00.000-07:00

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.

2009-10-06T11:16:00.000-07:00

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

2009-10-05T18:45:00.000-07:00

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

2009-10-03T17:14:00.001-07:00

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

2009-09-29T15:52:00.000-07:00

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

2009-09-23T23:07:00.000-07:00

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

2009-09-16T18:38:00.000-07:00

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)

2009-09-15T13:26:00.000-07:00

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

2009-09-10T21:20:00.000-07:00

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!!!

2009-09-09T11:37:00.000-07:00

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

2009-09-08T22:03:00.000-07:00

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.

2009-09-07T19:15:00.000-07:00

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

2009-09-03T14:54:00.000-07:00

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.

2009-09-02T20:44:00.000-07:00

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

2009-08-30T04:19:00.000-07:00

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

2009-08-23T21:58:00.000-07:00

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

2009-08-20T23:27:00.000-07:00

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

2009-08-17T09:18:00.000-07:00

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

2009-08-13T23:39:00.000-07:00

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!

2009-08-12T09:42:00.000-07:00

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.

2009-08-09T21:38:00.000-07:00

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 =)

2009-08-07T20:06:00.000-07:00

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

2009-08-05T19:15:00.000-07:00

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

2009-08-04T22:21:00.000-07:00

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

Going to the movieee

2009-08-03T11:18:00.000-07:00

I will tell you how it went when I get back =P

*EDIT
The movie was fun =)
And we got coffee and wandered in Border's afterwords.

Tomorrow I'm going to go over to her place. And Wednesday I'm going to B and N's.

Yup yup.

Now I'm going to nap.

~Bri

YAY!

2009-07-31T11:13:00.000-07:00

Its FINALLY cooled down some.

Wonderful =)

And, well, no, that's pretty much it. I'm going to a movie on Monday with Ms. E...

Okay. Sorry I'm boring and have nothing to write about but my life is pretty much sleeping and sleeping right now =P

Bye

~Bri

Too hot

2009-07-29T22:10:00.000-07:00

Today Seattle broke record highs. Actually, it got to the hottest it's ever been dating back to like, 1891. 102 degrees Fahrenheit last I heard. So, I'm basically having flashbacks of Minnesota summer, and realizing that if we still lived there, I might be dead right about now.

Anyways, too hot to do much of anything including posting. My week has consisted of chugging cups of ice water, staying in a tank and shorts all day, and hiding out up in my parent's room, because its only 71 degrees in there.

Pretty much.

I didn't go to Kris's today, simply because it would've been too hot in the rooms for me. As it was, I was getting floppy at dinner. We went to this delicious Japanese buffet. It wasn't the kind with a ton of American food though, which I liked. Many, many different types of sushi, which I had some of. I also had a couple of Japanese pastries, and some other fun good food.

Now, it is time for me to go melt into a puddle of goo.

Night,
~Bri

A came today

2009-07-26T22:03:00.000-07:00

A came over today. We cooked food on the barbecue and just....talked. Talking is fun =)
It...I don't know. It's hard to put to words how special it was to SEE someone with Narcolepsy/Cataplexy. I can talk to people all I want, but until you see someone who's like you, who's dealing with this crazy complicated disorder, yeah. IDK

In any case, I super enjoyed her time here, and I hope that in the future either I'll be able to travel there, or she can travel here.

Now...I shall sleep.
Because I didn't nap today, and I am tiredddd.

Bye bye,

~Bri

L's Birthday

2009-07-25T14:28:00.001-07:00

It's L's birthday today, and we're having a party for him here. He's turning 3! Its so exciting to look back and see the progress he's made in the last year. You see, he has ASD, or Autism Spectrum Disorder. This time a year ago he wasn't verbal. I think he had like, 10 signs and maybe as many words, if that. He wasn't comfortable with us yet, so we didn't get to interact with him much.

Now, he'll ask to be picked up so he can see the birds. He'll ask you to come play with him in his ever so cute voice. "Bee, Pay?"
He's pretend playing, that is, taking cars and making them drive on roads, making the Fisher Price people walk and talk. Before, he would just line them up.

We got him a table and chair set, some new pieces for his train set, and a little crawl tent. I hope he enjoys it all! I'll update later with how it went.

**EDIT**
It was super fun!! I had a blast. And L certainly seemed to enjoy his time and gifts =)
The one downside, it was very hot. So I hid upstairs in Mom and Dad's room with the AC and slept. And later on, B and I had a heart to heart. I've had some rough days in the past week, mostly Tuesday, and B was worried. I love him dearly for it!

Anyways, everything went great and was fun!

~Bri

So

2009-07-24T22:46:00.000-07:00

I met A today. She came from Chicago to see me.

She also has Narcolepsy.

It was SUCH a relief to see her. Like, I've talked to her for a while. But I've never met her.

It was good to actually see someone like me. To know she goes through some of the same day to day battles I face. Anyways, I'll have more later, but I need to go to bed.

~Bri

Posting

2009-07-22T22:49:00.000-07:00

Has been slow. Not that I haven't had stuff to say, I just haven't had the motivation to post. Which, also isn't actually because I'm not interested in this blog, I just.....I like sleep. I have been spending a LOT of time sleeping...

Anyways. Yesterday Ash and I took the city bus to the movies, and we saw Monsters vs. Aliens.
It was good! And super cute. After the movie we walked to the mall and hung out in Borders.

Then....today we went and looked at a house. It's not in this school district, so it'd be a new school. But it's an AWESOME, awesome house and property, so I can't argue...I mean, I don't want to move but. We're going to be putting an offer in on it, so possibly moving soon.

If we don't get that house, we're staying where we're at. For good. So either we're moving or we aren't and that'll be the end.

Tomorrow a friend is coming from Chicago. I'll share more on that later.

Yup.

~Bri

Seattle Aquarium

2009-07-19T16:19:00.000-07:00

Okay, so yesterday was very fun. We had friends over for a BBQ, with some super funny conversations lol. And Yeah, yesterday was fun.

Then todayyy, we went to the Aquarium. It was SOOO FUN!

We got there about 10, and wandered through the exhibits. I did end up using my chair, because we had no idea how crowded or hot or stressful it might be. It was a bit hard for me to maneuver in some spots, but it actually wasn't the fault of the aquarium, more the guests there. Most people were very polite, and I wasn't pushy by any means....I probably could have actually spoke up more.

I think my favorite exhibit was the Pacific Coral Reef. And the jewel tanks. My second was River Otters...they were VERY playful!!

I got a little magnet-clip seal as a souvenir.

After the aquarium, we went looking for lunch. The first restaurant we tried was called the Crab Pot. I'm sure they're usually very good, but they were inconsiderate when trying to seat us so we didn't end up eating there. They tried seating us at a table for 4, in the middle of a crowded dining room. The waiter suggested I sit at the end of the table! If the table had been bigger and in a larger space it wouldn't have been an issue. But I would have been in the way of the other customers, if I had sat at the end my chair would've been up against another diners'.

So we went to Steamers. Very good food, friendly wait staff.

Thennnn....Home. All in all a very good day.

And I hope we can do it again!

And now I'm maybe going to go on a walk.

Bye
~Bri

Too hot for me today

2009-07-17T22:42:00.000-07:00

It was wayyyy too hot for me today. It got up into the 90's and was about 80 in the house. I basically spent the day in bed or in the cars. (The cars are cooler =P)

Ummm, Roo went home today! I really enjoyed the opportunity to watch him, because it gave me some insight as to what it would be like to raise and train my own service dog. He wanted to be either outside (Boomer didn't eat him!!!!) or with me. And if we were sitting outside for more than 10 minutes, and I came in, he'd follow me.

And...yeah.

I didn't get much done though as far as chores or anything. My big toe, right foot, keeps getting infected. This is the second time in two weeks. Now, we've been trying to deal with nail related infections at home and for the most part we've been able to. But the nail is just NOT happy. So, may have to go see Dr. S about removal, antibiotics...IDK yet.

We heard from Dr. P today. I was supposed to be getting the spinal tap I need for Stanford at MB, but he informed us today that the hospital doesn't have to capabilities to ship the sample. And, it's understandable... the CSF has to be frozen to -80 F within 30 minutes of the draw.

So, we're going to call Stanford again and see if they have worked with any doctors in the area who have drawn AND shipped samples to them before. If not, we can wait until we go down in October...it's another diagnostic test, and it may change my treatment, but right now I'm doing okay. So it's not as big a deal.

Annnnnd. Yeah. Okay, long post, WELL overdue.

Probably more tomorrow. We have friends coming over, then Sunday is the Aquarium!!! EEE!!!
And And And, I might not have to use my chair! Depends on how I'm feeling and how hot it is and and and lol

Bye now
~Bri

Fed up

2009-07-14T14:07:00.000-07:00

I'm done. I'm seriously, completely and totally fed up.

For the last three days Ash has been promising me we'd go for a walk. Now, she doesn't want to. I know it may seem like such a trivial thing, but it isn't.

I can't go for walks whenever I want. If someone doesn't feel like taking a quick stroll around the block, oh well to me. However, if Ash wants to go stay at her friends house overnight or go for a 30 minute bike ride, that's all fine and okay.

I understand that I've got issues that make things more difficult. I understand that yeah, I've been to the ER WAAAY too many times.

But I am so over not even being able to take a nap without someone checking on me. My bedroom window is screwed shut. It doesn't open. I'm pretty sure, I'm not leaving the room, and no big scary monsters can get me. I don't need to be checked on.

I'm frustrated that I can't take a shower without someone coming into the bathroom and checking on me. Yes, I've had an episode while I was taking a shower. ONCE. I was fine. I don't take long showers. I was also not on the greatest meds at the time....in fact, I don't think I was on any.

If I don't answer someone when they call because I'm tired or, God forbid, I've been listening to music and they can't hear me, then I'm in big BIG trouble.

I get nagged about my school work. I WILL FINISH SCHOOL! I want nothing more than to finish high school and get into college. I know what needs to be done and I'll do it. I don't need the motivation. How about you focus your energy on Ash or Tori? They need a push too.

I need a break. I need a break in the worst way. I need to feel like I have SOME level of control over my life. I'm going to be 18 soon, and I feel like I'm 5. I'm not asking for someone to hand me the keys to a car and say "go for a drive." I'm asking to be able to do simple, everyday activities without someone holding my hand every step of the way.

Sorry. I needed to vent. It's been a rough day.

~Bri

Winnie the Pooh!

2009-07-12T19:37:00.000-07:00

I had much fun today with Ms. E!!

We went to a Starlight Great Escape, a Winnie the Pooh play put on by a local kids' theatre.

It was a super fun, super cute play. And the kids were great, they all seemed to know their lines, and I only noticed 1 slip up. (I'm looking from the eye of a former stage worker, not being judgmental)

So it was cool. Then we came home and ate linner at Panera.

ANNNND. Yeah.

Tomorrow morning she's bringing Roo over. I'm going to be watching him for the next week, which will be fun. It'll kind of give me a look into what it'll take for me to really be responsible for my own dog. Like, I'm responsible for Boomer, but, everyone in the family cares for him. With a service dog, it will be only my job to take care of the dog, unless I'm unable to.

So yeah.

~Bri

I'm running out of good ideas

2009-07-10T17:10:00.000-07:00

For blog post titles.

Anyways, Ash and I just got back from a long walk. It was fun!

But hot...yeah.

And we had a cool moment on SBW earlier today. A special guest signed on earlier. It was very nice of her, and I just thought I'd put that down.

Anyways.

Bye now.

~Bri

Walk.

2009-07-08T16:57:00.000-07:00

Ash and I got back from a walk a bit ago. It was fun, and the park we went to had a see-saw =D

Yup, it was fun.

And...I think we're going for another walk tomorrow. Cause she's cool like that.

AND. This weekend I'm going to a play with Ms. E for her birthday. Not paid for by me, because it's a Starlight GE event, but I'm paying gas. I just can't drive her there lol.

So yup.

~Bri

I'm positive.

2009-07-06T11:45:00.000-07:00

We just got the results back.

I'm positive for the HLA marker that 90% of people with Narcolepsy with Cataplexy have. Now, 20% of the general population have it as well, so it's not a diagnostic test for sure. But, there is the possibility of me having Narcolepsy w/Cataplexy...

I think now from here is the spinal tap to test the level of hypocretin in my CFS.

I'm scared out of my mind.

But, one step at a time.

That's all for now I think,

~Bri

Yay for Independence!

2009-07-04T12:59:00.000-07:00

Day, that is.

Yup, it's the 4th of July.

In 1776, John Adams wrote this in a letter to his wife, Abigail.

"The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more."

He was off by two days. But, we do still celebrate the holiday with "pomp and parade" as he wrote.

He also wrote, in that same letter, that he is "well aware of the toil and blood and treasure, that it will cost us to maintain this Declaration, and support and defend these States. -- Yet through all the gloom I can see the rays of ravishing Light and Glory. I can see that the end is more than worth all the means."

Soldiers of every generation have fought to defend and support our country. In history, it was on our own soil. Now, today's soldiers are overseas fighting, still for our country and for the independence of others.

John Adams thought the end was worth all the means. It is. I get to go celebrate this holiday with family and friends, without worrying about things like my freedom.

Keep in mind it wasn't always this way, and please keep in mind the men and women overseas and those away from their families today. It's one more holiday and one more set of memories they don't get to have.

~Bri

mmmm....Red Robin

2009-07-03T22:24:00.000-07:00

We had Red Robin for dinner and it was nummy!

So yesterday. Was busy, but good.

I got to Blake and Nick's early, and the day was pretty low key. It involved a lot of driving, but not a lot of excitement lol. I had fun though. I love going over their. And L is such a cutie!

I DID try to nap this time, but was unsuccessful. I had an episode of what I *think* is sleep paralysis. I obviously can't say for sure, but. Anyways. It sucked, and I didn't get any sleep, and I felt a bit rattled for the rest of the day.

Blake and I ended up picking up my mom at the train (popo fain in L speak) and going to our house. Then to dinner, Blake and L and Mom and I. Yup, that was fun!

Umm. So yeah.

Today also not much, basically housework and trying to keep cool. But we did go out for dinner =D

Tomorrow we're going over to a friend's house for the holiday. It'll be fun. They have a very nice view of the Sound, and you can see all the fireworks from the different areas.

Bye
~Bri

Farmer's Market

2009-07-01T20:47:00.000-07:00

YESTERDAY, I went to Blake and Nick's for the afternoon so Bro could have some free time.

It was VERY fun. I don't often (ok, almost never) get to run after a small child with bundles of energy, so it was a good workout. And, I slept really well! We walked (rolled) to a farmer's market about 6 block from their house. It was a longer distance than I'm used to all at once, but it actually wasn't that bad. We rested enough in between that I didn't struggle from weakness or tiredness on the way back. And, yeah. I just had loads of fun. I'm going over again tomorrow!!!

Today was fun as well. I didn't use my chair going into Kris's, which was cool. She was surprised to see me without the chair. We also sat outside, which was fun. A bit windy, but it was still fun.

So yeah. Tomorrow I'm going to Blake and Nick's in the morning.

OH! I signed us (family) up for a Great Escapes today! We're going to the Seattle Aquarium on the 19th. SO excited!

Yup.

~Bri

Sorry I let it slip.

2009-06-28T22:06:00.000-07:00

I REALLY need to keep on top of my blog...mostly for me though. I would hope there are people reading this who are interested in what's going on in my life, that care. And I know there are those few (you know who you are). But I'm kicking myself for not keeping up.

Even though not much has happened. No news from the docs.

I've been able to get great sleep the last few nights. I've been taking Tylenol PM at night for my toe...nail came off. So, I've been sleeping very well =D

And...OH we have plans for the 4th.

And I get to Roo-sit the 13th-17th =)

Yup.

We should also know about the house within the next two weeks.

*crosses fingers, toes, and eyes*

LOL

Bye
~Bri

Got to hang out with Ms. E today!

2009-06-25T22:58:00.001-07:00

ALLL day. It was fun. We did cleaning and organizing. Lots, and lots, and lots of organizing. =D

Yup. I LOVE getting out of the house to do stuff. Yup.

Bye for now,

~Bri

Starlight Children's Foundation (cool fundraiser)

2009-06-22T08:54:00.000-07:00

Hey guys. I want to share with you the blog of one of my readers.

The company she's with is doing a WONDERFUL fundraiser idea.

A Starlight Children's Foundation "Starlight Bracelet."

It's very pretty!

Here's the link to the post: CLICK THIS!!

If you all could check that out and maybe support Starlight Children's Foundation, it would be MUCH appreciated!

~Bri

Communication with Stanford

2009-06-19T13:48:00.000-07:00

Today, after my appointment with Dr. H, we got a call back from Stanford.

We talked a lot but it basically comes down to this. I'll have a blood test to see if the HLA marker is present. If it is, either we'll travel to Stanford, or maybe we'll be able to see a doctor up here who will do the spinal to test the hypocretin levels. My appointment at Stanford isn't until late October, so if we can get these things done before hand, it's much more info before we go. I already have an appointment with Dr. S on Monday for the blood test.

So.

My appointment with Dr. H went well, he agreed to keep me on the same meds, but also lets us know there are a few other drugs out there that might work if we ever want to try them.
When we told him that we had thought about going to Stanford his only question was "When are you going?"

=D

And, we found something else out about why I might be having attacks in the bathroom.
We found out earlier this month that it's not uncommon for people (with N/C) to have episodes while in public bathrooms.

But Dr. H said that there is some reaction that happens (or can happen) when you don't use the bathroom as often, then empty your bladder. He said in normal people it can cause fainting (like, if you didn't use the toilet for 10+ hours, then emptied your bladder, there is a possibility of you fainting.)
He said that it causes a reaction (parasympathetic discharge? reaction?) similar to you laughing. Basically he said it made sense. Only when he said it it was much less complicated =)

BUT, we've found out that if I go more frequently, I haven't been having attacks in the bathroom.

Which means, I need to pee more often basically.

So yeah. Good good.

Umm, I don't think there is anything going on later this weekend.

Yup.

~Bri

How sad is that?

2009-06-18T22:12:00.000-07:00

Mom was just sharing something funny from the interwebs, and we (family) were laughing about it, A LOT.

But lately I've noticed that when I laugh over....lets say 4 minutes....my back starts to spasm. I'm sure its the muscles in your lower back that you use when you laugh. Most people probably don't notice it unless those muscles aren't well stretched. Like mine.

It. HURTS. SO SO MUCH.

I wonder what exercises might improve the tone of those muscles?

Laughing hard then ending up crying isn't the best way, I'm sure.

~Bri

BIG Step

2009-06-18T21:58:00.000-07:00

Today, for the first time since March, I got to walk to the Library with Ashy.

It was SOOO fun. I've really missed walking and having that exercise.

And it went totally fine.

And I have an appointment with Dr. H tomorrow.

And I think I get to walk in.

yay.

AND, I may get to go for another walk tomorrow, should my legs cooperate.

Yup.

Bye for now,

~Bri

Bad dream = Foggy day

2009-06-17T11:31:00.000-07:00

Okay.

So after Mom came in and gave me my meds today, I went back to sleep like I do every day.
But instead of sleeping like, an hour more then getting up, I ended up sleeping another 4 hours.

And it wasn't restful sleep at all.

I had a bad dream and a possible attack of sleep paralysis.
Sleep paralysis is one of the four main symptoms of Narcolepsy, so it isn't odd that I may have had an episode. But I don't often experience sleep paralysis or hypno hallucinations. Most of the time it's just minor EDS and of course Cataplexy.

It was scary. I was sleeping, but not. And I was trying to open my eyes to get away from the situation (the situation I was dreaming, that is) but I couldn't move at all. I couldn't open my eyes....it was like an attack of cataplexy only worse, because I was sleeping.

All in all, it's resulted in a very rough morning, complete with a total brain fog and dizzy spells.

Its not often anymore that this happens but when it does it throws me off.

So.

~Bri

I got an A in Geometry!!!!!!!!!!

2009-06-16T13:26:00.000-07:00

YAYAYAYAYAY!!!!

I just found out I got an A in first semester Geometry!
My grade is already being switched to A from C.

SO so happy! I didn't think I could do it but I did so YAY!

AND I found out that if I pass the summer course of second semester Geometry, then I'll start next school year with junior credits....

*does a happy dance*

I'm so excited. I really had no clue I was doing this well in school. Like, I knew my credits were pretty good, but I thought I was still a semesters worth of credits from Junior.

Okay. So, I also found out that we're for sure staying in the area. I will be going to Stadium next year. Yay.

Hmmmmm.....Happy Post.

~Bri

Schools out!

2009-06-16T01:32:00.000-07:00

*Starts Alice Cooper*

Yup, school is done (for me anyways)

Today was my last day. Tomorrow I'll be stopping in for about 15 minutes to tie up loose ends and finish saying goodbye.

*Sad*

I'm excited for summer, but I'll really miss school.

I'm hoping that this summer I can get through an Internet course or two and earn some more credits.
**********************************************
Saturday was Mom and Bro's B-day.
Bro is now 1/2 as old as Mom, and Mom is twice as old as Bro.

(sorry couldn't help throwing that math problem in)

It was quiet, and Bro and my older sis were both busy. I know my Mom was kinda..sad. She's not used to us kids being SO independent I don't think.

So.

And then last night, instead of church Ms. E came over for dinner and coffee!
That was a blast!
***********************************************
The attacks are still under control. I think...the only one I noticed from this weekend was as we were leaving Fred Meyer's. The security alarms went off because the cashier forgot to remove the security tag off something my older sis bought. I didn't go all the way out, but I did get weak and a bit foggy for a second.

Today I also had a harder time focusing, my brain was foggy. I didn't sleep well last night, because one of my toe nails came off the rest of the way. So that didn't help. And I got up earlier to study for my Geo test (which I rocked, btw)

Okay.

It's bedtime

~Bri

Okay now this is getting annoying.

2009-06-12T22:43:00.000-07:00

I've been relatively fine all week. A few rough coughs but, you know.
Generally okay.

Now though?
Not so much.
Cough, slight temperature, and a general feeling of ickyness.
Allergies suck.

But it's the weekend so hey, it's all good!

Monday will be my last day at school.
I'm sad.
I really, really don't want to be done.
Too many good people, and I felt so welcome there.
I don't know what I'll do if we end up moving and I'm in a new school next year.
I mean, I do know. I'd deal like I always do, but still. I really, really felt great at school...

I felt like I did in 9th grade, before I got sick.
Yeah I had some (okay, a lot) of frustrating days.

BUT.

I'm gonna miss it if I have to leave.

So any ways. I need to get better before Monday. .

And yeah. Oh I got a cute new bed set today.
Just thought I'd share that.

Bye now

~Bri

Starbright World

2009-06-10T19:49:00.001-07:00

Okay so I talk about SBW enough, it's finally time for a post.

Here's info pulled off the Starlight Children's Foundation site.

"Many seriously ill teens are unable to leave the hospital or their homes, which often results in loneliness and feeling left behind by friends. Starbright World® (www.starbrightworld.org) is the premier online social network for seriously ill teens and their teen-aged siblings. Whether from home or the hospital, members are able to get to know other teens from around the world who are going through similar experiences. They chat, post to the bulletin boards, share pictures and create blogs. The site is professionally moderated by Starlight staff.

My Life is now also available as an important extension of Starbright World. My Life was developed specifically to help teens with life-threatening illnesses acknowledge and cope with the possibility of death. All teens wrestle with wanting more independence, new life experiences, and greater control over their lives. Dealing with a serious illness can make being a teenager even more overwhelming, and can take a significant toll on both physical and emotional health.

My Life’s goal is to help sick teens process their feelings and understand their fears about their illnesses, while at the same time making it easier to communicate about what they are feeling. The program helps teens express themselves and process their feelings by allowing them to:

Document their stories and journal their thoughts;
Express themselves through photos and personalized profiles;
Describe their experiences in order to better understand their own emotions;
Interact with other teens who are feeling the same fears; and
Develop the communication skills and comfort level to adequately express their feelings and wishes to friends and family while they have the opportunity.

To see a demo of My Life, visit click here.

Starbright World members love the features and capabilities of this community, as it reminds them that they are not alone and provides much-needed peer support. As one user tells us:

"I think Starbright World is a good idea. It gives us a chance to talk to other people in the same situation. It lets you find out for yourself that there are others like you. You also have the chance to let your mind wander away from your pain. So I'm just writing to say thank you!"

Altavoice2, SBW user

The Web Marketing Association honored Starbright World with 2 Standard of Excellence Awards in nonprofit websites and online communities as part of its 11th annual WebAward Competition for website development. More than 2,400 sites from 40 countries were adjudicated in 96 industry categories during this year's competition. Entries were judged on design, copy writing, innovation, content, interactivity, navigation and use of technology. Starbright World scored particularly well in regards to design, innovation and technology and was off the charts for interactivity! "

So. SBW is my big escape...when I need to vent, or just feel like I fit in. I know, it's so "the world's against me" to say that I don't fit in at school, but it is INCREDIBLY awkward some days. And when I was out of school for these last four months, SBW helped keep me sane.

So that's what SBW is about, when I say SBW I'm talking about Starbright World.

~Bri

Bleh

2009-06-08T21:05:00.001-07:00

Yup, sick, fever still.

I'm still sick, but...

2009-06-06T22:25:00.000-07:00

I'm still sick, but I was feeling well enough earlier AND didn't have a fever, so I got to go to a friend's baby shower.
Now, fever is back, cough is back (although the cough never really went away) and just feeling gross.
If it doesn't stop Mom said she wants me to go to the docs on Monday. Which I totally understand, I've been sick for like, a week, most of that week with a fever as well.
BUT it's been a while since I've had to go to the doctor's for any reason other than consult, attacks based or not. Like, I haven't seen Dr. S since February?

So. I considered that an accomplishment =)

lol

Anyways I suppose sleep is a good help. So bedtime.

~Bri

WHY?!?!

2009-06-04T14:27:00.000-07:00

WHY must I get sick right before school is over. I don't have that many days left.

But I can't go because I have a nasty cough and a fever.

Doesn't that just sound like a ball?

So now, I get to sit at home and do more Geometry.

Fun.

~Bri

Stuff

2009-06-03T09:09:00.000-07:00

Lots of stuff has been going on.

Umm, Friday and Tuesday were both fun, successful days! I didn't go on Monday due to a bad sore throat/fever, which got a bit better yesterday but has now become a bad cough. Good thing I'm staying home anyways.

Today I have to go get some blood drawn for that Lupus test, then we're going to get ID's, (Twinn and I) then, lunch, then Kris.

Now for school updates!

I've got A LOT less work than I thought I did to finish out the first semester of Geometry, and only needed one or two prompts from Mr. D to remember the rules/formulas. I should be able to get that done before the year is out and do second semester Geometry over the summer, then be able to take Advanced Algebra next year.

The rest of my classes are like this.

Independent Study Algebra: On Track

Health 2: After discussing with my teacher, (who saw me come into the room, got this shocked look on his face, then about doubled over laughing, btw) we decided that it was highly improbable that I would be able to finish the semester. So I have to check in every day for attendance reasons, but then I get to use the period for free study.

Geometry: as said above, I'm on track to finish first semester.

Study Skills: Another free study period.

So that's what school looks like for the next 2-ish weeks.

Then summer.

I have no clue what summer holds.....a move, possibly traveling for a diagnosis, possibly getting a puppy to begin training for a service dog, possibly getting a new chair?

Lots of things are up in the air.

~Bri

So folks, we finally got news today.

2009-05-29T19:29:00.000-07:00

UW sided with Children's. I'm having blood drawn for Lupus next week, but I have a funny feeling that's going to be negative.
They also told us that in order to have the spinal done, I have to go to either Stanford or Mayo, they can't do it.
We know we might have to travel now. But maybe my daddy will be able to figure something out here. If not, travel then.

Sheesh. I just wish I didn't have to deal with this. Don't we all though!

On the bright side, today I went back to school for the first time in almost 4 months!!! Even though I'll only have like, 15 days left, it's a start! I'm currently taking Daytrana which is a stimulant and it's cut down my attacks drastically.

Well that's all I have to ramble about

~Bri

Because I can't say it any better than he did.

2009-05-25T14:50:00.000-07:00

A Day In The Life Of An Ambulance Driver: Because I Can't Say It Any Better Than Last Year

This post hit me hard. It was read to the family and brought about a moment of silence and tears. We have family members who have fought for our country. My dad, my uncle, and my grandpa all have. I've lost relatives to wars.

I appreciate all they do and did for our country, and I appreciate all those that I don't know but still work to keep me and my family and this country safe.

~Bri

Shopping was fun

2009-05-24T10:37:00.000-07:00

Mom and Ash and I went shopping yesterday.

It was fun.

We got some clothes, ummm lets see.

I got 1 shirt, 1 pair of jeans, 2 pair of flip-flops (gotta love Old Navy's 1 dollar flip-flop sale)
and....a new bag I can use in my chair. It's super cute too.

And we got things for the house from Ross. I got a new hamper so we have some more baskets for the house. I also got a file organizer, one that I can use later on, (after graduation, when I eventually move out, etc.) as well as now for school papers.

Plus, we're all (my entire family) getting new phones, which is exciting. Hopefully this new one will hold up better under my attacks, although my attacks are pretty well under control so that's good.

So. More coming in the next few days. On Tuesday, because it doesn't look like I'll be in school *sigh* I'm calling Shay (Children's) and my dermatologist to see if any of them have any news.

Hopefully I'll be able to get back in school soon. I already have first day planned out, down to the clothes I'll wear, because I'm hoping that will help alleviate any stress I might have. That way any new stress is just there for me to deal with, not piled on top of other stress.

So.
Bye

~Bri

No school yet

2009-05-21T21:23:00.000-07:00

I'm still not back in school, and we still haven't HEARD from the school, so I don't know when I'll be starting next week either.

Today was much fun though. I got up and almost immediately after I left with a friend who live in OR most of the time. We had a pretty good day hanging out and just doing pretty much nothing.

It was fun to get out without family and just feel normal.

So.

Tomorrow will be cleaning....and...maybe some shopping. I kinda want a watch and I definitely want some shirts for summer. A lot of the ones I have don't fit right for my chair, as in when I'm in my chair they're much too low cut. Everyone is about 2 feet above me, so I try to cover up a bit extra.

And...hmm, I don't know what else. Yeah. No school tomorrow or Monday, so I would only have four days if I started on Tuesday, so I'm kinda wondering if I'll even get four days in next week.

Well.

Bye for now
~Bri

Back to school

2009-05-20T12:36:00.001-07:00

So...I think I'll be going back to school sometime this week.

I'm feeling...apprehensive.

I don't know....I don't know if I'm ready yet. And I know that might be silly, because it's not a new school or anything...But I've been gone for the most part of almost three months. Actually it's closer to four.
Anyways.
When I start again I'll be switching some classes around, not teachers, just classes. I'll only have four classes now, and I won't start until 9:30.
Hopefully this will go smoothly. Hopefully I won't need to mess with my meds to help me get through the day, because that always throws my body off.

And biggest hope of all, I hope I'm able to get back on track for next year. My counselor thinks that maybe I'll be able to get back on track to do junior classes next year.

So. More on this later tonight or tomorrow.

Bye for now,
~Bri

Today....

2009-05-18T23:36:00.000-07:00

Ash and I went to the park next to the library and just sat. It was nice out, sunny without being too hot, so that was good. I used my chair. We started off at the park, but there were a lot of kids, and both Ash and I just wanted to sit outside in the quiet, so we rolled over to in front of the library and sat there for a while, and I drew a rhododendron...
Then when it got too sunny and hot we went up the little hill towards the fire station cause there is a BIG oak tree with nice shade and a little dirt patch I can park my chair in.

SOO.

It was a good day.

~Bri

We had a BBQ

2009-05-18T11:49:00.000-07:00

And it was fun.

Yesterday.

The barbecue was great, Blake and Nick and L came over.
Very good food, good friends, good time

I didn't end up going to church yesterday, because the heat of the day plus the combination of me just being worn out would've been too much.

So Ms. E and I just went to Starbucks instead and sat under an umbrelly outside. And she brought ROO!!! He's soooooo cute. And lovey.

Thennnn....home, bed.

Pretty much.

But yeah.

Bye now,
~Bri

I seem to be failing at this whole "posting" thing...

2009-05-15T23:02:00.000-07:00

I know, I know. I suck

I haven't posted in forever...well, like, a half a week. BUT.

Nothing much has happened either.

Ummm....an exciting piece of news is about the boat. Ashy is part of Sea Scouts, and she's been wanting me to come. Mom was worried I'll fall overboard and die. I understand her fear, however many times I may scoff at it.

BUT.

Some things have now been sorted out.
When I'm able to go on the boat, I will stay below the entire time we're sailing.
When I'm able to go, there will be a certain skipper there....he's a doctor.
And, I'll be using a life-vest the entire time per protocol like all the other kids.

So. That may be something fun happening soon.

So. That's all, still nothing about school, nothing from Children's, UW, or my dermatologist.

Night,
~Bri