I just want to SLEEP!

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

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

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

Woke up this morning sore, but safe.

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

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

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

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

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

SO yeah.

~Bri

Happy Mother's Day and other stuff

So my last few day's have been pretty interesting.

On Friday nothing happened.

Saturday...
We did stuff around the house, mowed the lawn...it was nice out.
Tori and I also sat outside sunning for a while, and I had an attack, it was only like 2 minutes though.
Then I had a fugue state and wandered. I ended up like, a block from the house. I had one of the attacks that happen slowly, and I was still able to move my eyes. 911 was called, but luckly all the fire fighters knew me... That made it much easier. They called my parents and Dad and Tori came and got me and took me home.

So....then...On Saturday we also went shopping to get the rest of the things we needed for Mother's Day. We got Mom 2 waffle makers because she's been wanting some. And we also got her some roses.

Sunday morning Dad and I got up early and went to get a few more things we needed to make breakfast, and we got Mom a few more little things.
We made breakfast, enjoyed the morning, and afternoon.
Haha and I watched Mom and Tori give Boom a bath, he looked like he was going to die.

Then I got to go to church with Ms. E and her mom! It was sooooo good to be back in church...I've really missed that.
We also went to Hungry Hungry Hippos, and ended up at Olive Garden. I had so much fun!
Ms. E and I pulled G duty so his mom could eat and talk and not worry about baby.
It was very enjoyable!!!

Then, home, bed, sleep (sorta) now here we are. TADA!

Hehe

Bye now,

~Bri

We finally found the right doctor!

So wow. It's been 7 days since I posted.
A rough 7 days.

So Saturday was actually really really good. I didn't have any of the full body attacks, but I did have two minor localized attacks. I also got to go out with Ms. E for coffee which was nice.

Sunday was okay until about 6 o'clock, when I woke up from my evening nap. I couldn't move my legs, so I had to use the chair until bedtime.

Monday. Wow, Monday was rough. So when I woke up, I was starting into a full body attack.
Brandon and Tori were home, but it was rough to say the least. That one lasted until probably 2?
Then around 2:30-ish I had a fugue state, left the house, wandered, and collapsed into another full body attack. I was taken to MB, and was there for another 9 hour trip. We got home at like...11?

Tuesday was....okay-ish. I think. I don't remember what happened Tuesday. Mostly recovering form the long attacks, relaxing strained muscles, and such.

Wednesday was good. I moved back down to the 10's which has been the right choice. I went with Bro to go get his trailer so he could go get his new car, then home. Then sleep. lol.

Thursday was a grand day. So first, I had my appointment with the sleep clinic in Bellevue.Everything about it was awesome, except the part where they had daddy make me go out. That sucked a little.
But they listened to us. Actually listened. Sat for 2 hours and listened in fact. The NP, who seems to be our main caregiver and the person we'll be interacting with, was so nice.
After she was done with an extensive history, she called the doctor right away.
Without even two sentences apparently the doctor confirmed what we've know for quite some time. She said without a doubt my symptoms were Cataplexy.
Then, because of a miraculous cancellation, I was able to be scheduled for a sleep study on Sunday, otherwise their next available spot is SEPTEMBER.
Wow, Wow, Wow,

The doctor also said she'd be willing to try a drug called Xyrem. It's main ingredient is GHB. But, it's shown great success treating people who have Cataplexy/Narcolepsy. It basically knocks you out so you get great sleep, then you don't have the same issues in the daytime. Right now, if I miss a nap I have a worse time controlling the attacks, because I'm more susceptible to emotional triggers. Part of the reason I need naps during the day is because I don't sleep well during the night. So if we do try this hopefully it will be the right treatment.

And then Mom, Dad, Tori and I went to Seattle so Dad could finish something at work. Mom and Tori and I got coffee then wandered. Then we went to the marketplace across the street and wandered. Then came home.

And we also found out last week that insurance will cover a rigid frame chair up to 90% up to $1,000 dollars. So if the chair is $1,300, they'll cover $900 of it and we have to cover the rest. Which still isn't bad, because that brings the price of a rigid frame chair from $1,300 to $400 so.

Yeah. Lots of good lately to compensate for the bad.

Bye for now,
~Bri

March

So....this month...

Health:

• The *seizures* were still happening, but after an ambulatory EEG it was determined that they aren't actually seizures but probably symptoms of migraines.
  
• I also had my nail bed biopsy, which didn't give us any results or answers as far as my nails.
• I had one fugue state. A few scary attacks, one in the middle of the street, one that caused concern of a possible major head injury, but that turned out to be a minor concussion.
  
• I also found out this morning I have an ear infection which has been causing me to yawn a ton over the last week or so.

School:

• I've missed A LOT of school because of the problems, but we're working on making sure I at least get some credit this semester.
  
• Amy was given a full-time para position, so I know she's happy and that she'll be there on the days I do make it to school.

Family:

• We're staying in the house, at least until end of April hopefully until May.
• Dad and Tori both had birthdays this month.
  

Social:

• I've been able to get out still, and was able to go to the beach with Tori and a friend earlier this month which was cool.
• I also got my dress for Starlight Prom...

• And I got to meet N, an awesome friend I'd previously only spoke to online or on the phone.

• And, we've applied for a service dog!!!

Yay!

So....yep.
Bye for now,

~Bri

Cold morning in Tacoma

So.....my morning was...blank.

For me, for the most part anyways.
I had a fugue state, left my bedroom while I was folding laundry and ended up near the library.
I don't know how long I was gone, but I do know I was very, very, very cold. Like, the snow felt warm. I was on the frozen ground when I was found, that may have something to do with things.
The fire fighters were awesome. They were very nice, or so my sisters said. And the EMTs were too. I guess I was also having worse-ish seizures? Not full blown grand-mal, but not the normal petite mals either.
I hate these things.....they're hard for me, and so much harder for my family. At least I don't remember a great deal of the incident.
Well, that was my morning.

My afternoon was much better. I was able to take a nice long shower, and didn't have issues after I rested a bit. Then Ash and I were dropped off at the library, where we each checked out a few books. Then....we went to go for a walk, around and around the park/library/fire station.

So...now it's like...nighttime ish.

OH OH OH!!

I get to go to Starlight Prom!!
That's very exciting for me!

More on that later.
And more tomorrow, busy day planned.

Bye

~Bri

ER, take 293042

Just got back from MB, after a blackout. Bleh.

Time for a real post.

So. It's been a while since my last real update.

In this month....

Health:

• I've had 4 days with attacks, one day that I also had a fugue state on.
• I had to have a toenail removed by my doctor because it was ingrown, and I've also had a few infections due to nails coming off.
• My headaches have gotten worse, and longer, and we're not positive why.
• 3 of the attack incidents have been because of a stomach bug, which I'm now thankfully over.
• We JUST got a call from Children's in Seattle today, I have an appointment at the beginning of April.
• I also got in with a dermatologist, I see her on the 19th.
• My next appointment with Dr. H is on the 11th.

Social:

• I've been going to church and getting out a bit, but not much because of the attacks and being sick and whatnot. I've also missed a fair amount of school...
  

Family:

• We're moving! We just aren't sure where yet.
  
• I'm also getting a service dog....we're looking into it.
  

School:

• Like I said, I've missed a fair amount. Even still I did well on my finals, and hopefully passed everything this semester.
  
• I still have Amy! She's been able to stay on, which has been so wonderful while we're dealing with my health problems. The consistency has been a very big help.
• New semester!
• When we move, we may be switching schools, so that's been one stress point.

So....that pretty much covers it.

Well, TTFN
~Bri

Fugue State strikes again

I had a fugue state yesterday after my appointment with Kris. Mostly all of what follows was told to me. It'll be in green for clarification.

After my appointment with Kris, Ash had hers. Mom was asked to stick around so she could go in for a bit. While we waited for Kris to come back and get Mom, she paid for Ashy's appointment that was today. I slipped into the fugue somewhere in here. Kris came back out and grabbed Mom, I stayed in the waiting room.

Sometime afterwards I left the office. About a block down from the building there is the entrance to the BPA trails (City managed paved biking and walking trails). I went down one of those for a while, about half a mile. Then I went off the trail and most likely fell down the hill and was found near the creek. A boy from my school was walking and found me. My sister called me and they talked, he had already called 911. I was in and out, many many attacks. I remember him saying my name, and telling me he was helping me. Soon EMS arrived, and they assessed me. They were pretty good this time, and didn't do much painful stimulation, only a bruised ear lobe.

They helped me stand up, but I wasn't ready yet. My legs wouldn't support me. We tried again, and this time I was able to stand up, get my shoes on. I tried walking a few steps and went out again. They decided to carry me out on like...a nylon tarp because I couldn't stay alert and strong long enough to walk out. I woke up again in the ambulance. The paramedics were really nice, and quiet. That was cool, because normally the paramedics are really loud and like...hyper almost. I was still going in and out though. We got to St. Francis, and they brought me into a room. The nurses started undressing me (grrrr) and got me changed, plus they put me on oxygen and started an IV to draw blood. My family was there by then, actually Ash had rode with in the ambulance. Parents talked to the doc and they started releasing me almost as soon as I got there.

One big accomplishment is that my sibs were making me laugh, and I started going out. Mom was able to catch my attention and calm me down, and I didn't go out!! I'm sure that if I had been standing up I would have still collapsed but I never went full out...!!

So...then we went home and I ate, took a shower and went to bed.

Today has been okay, I only did a half day today. We decided yesterday to do it that way. Cause I was able to talk to my teachers about my CBA's/finals, and was also able to take it slowish.

It's bugging me that there is some senior trained as a lifeguard with glasses and dark hair walking around at my school who saw me completely incapacitated and I have no clue who!!!

well, bye.
~Bri

My year retrospectivly

So, it's the last day of '08, and I believe this calls for a review of the year. I'll go by month to make things easier!

January:
On the 3rd I got hypothermia due to having an attack outside and not being found for a while.
This happened while my parents were in NY for my aunts funeral.
On the 16th I was actually hospitalized due to the frequency of the attacks. I spent 4 days in the hospital. While I was there, doctors made the diagnoses of Conversion Disorder based on the absence of another condition, but an obvious problem. I was also told I would have to use a wheelchair for safety. And I turned 16!

February:
I started school again! I had three classes at the building, AVID, English, and a TA position with Ms. E. I had to use the chair, which believe me was awkward, especially seeing all my friends and whatnot. I was also Track manager for about a month. The attacks were down to about 1 a day, and I also started seeing Kris. I was having a lot of fugue states during this time because of the meds.

March:
Tori turned 17!
I was pulled off Track for "liability issues" but was still doing okay in school.
The attacks were still one a day about. I had a rough bit at the end of the month with quite a few attacks, 17 in one day, and was worried for a bit that I was going to end up in the hospital again.

April:
We had the WASL.
It was hard on me, and I didn't even attempt Math or Science. I did however do Reading and Writing and passed both portions.
I also met with an Endocrinologist, who more or less told us he couldn't help. Specialists would see the diagnoses of CD and automatically take that in when trying to make a differential, so basically it was making it impossible to get a second opinion.
I was also able to connect with some old friends!

May:
I was able to connect with some peeps who live in wheelchairs, and it really helped me out.
We also looked at a condition called HKPP as a possibility. HKPP is a periodic paralysis condition, so it seemed fitting. We looked at this at the end of May. I also got my purple chair!
And we were looking at houses in case of a potential move.

June:
Ah. June was a big month, and the month I started this blog!
On June 3rd I had my first seizure. It was terrifying, I'm sure for everyone involved. I was actually intubated during an attack because the paramedics were concerned I had lost consciousness after the seizure, and my airway was in apparent danger, so they intubated me! No drugs. One of the most terrifying moments by far. At the hospital I remember waking up to a tube in my throat, one in my nose, multiple needle sticks happening, and to my right, a row of doctors. I was in the hospital overnight. While I was there, and EMG was performed, and it was determine that during an attack my muscles were not paralyzed, and my potassium levels seemed okay, so HKPP wasn't on the board anymore. However, it was decided I needed to start seeing Dr. H. I had 3 more seizures during these first two weeks, and school finally let out.

July:
I started seeing Dr. H, and he surprised us by telling us it was possible I had something other than CD.
We thought we were moving, no dice. I also did a ton of things, like; go in a pool, go to the beach, and went out without family. The attacks were good, still one a day. I stopped the Celexa and started Prozac.

August:
I got onto Starbright World! A blessing definitely.
We knew we were staying and knew we were going to Stadium.
I got to help Ms. E with her room, so I got time without family! This was funn. I also started loosing nails somewhere in here. And I got the donation-to-MB idea.

September:
School. I started the Lamictal, LOTS of attacks. I was also referred to a Cardiologist. I went to see Mamma Mia! with a friend. The cardiologist said my heart was fine, and to look into Cataplexy more. A few ER trips due to fugue states and other issues with the attacks. And a lot of bad bad days.

October:
I stopped the Lamictal. The attacks (frequency and severity) improved rapidly. I was able to stay in school longer and longer each day, but we still had a few terrifying fugue states.
I also started Concerta, which has been amazing!
I qualified for Special Education which has opened so many doors for me.
Things with the attacks were really changing.

November:
I began attending church again. I was doing really, really well with the attacks, and when I did have one it was the first in a month! My grades started improving dramatically. I got to finish my donation project. We dealt with some health issues I had. And things with the house started getting topsy-turvy again.

December:
Grades are awesome, social is mostly awesome. The house business is messed up a ton, we're moving. I'm still improving a ton. We had a lot of snow! I was able to enjoy the holidays with my family while staying awake! I swallowed a sewing needle. <-----Darwin Award

So.

This has been my year!

YAY for 2009!

-Bri

Hey y'all

So, good morning, rough afternoon.

I was cruising through 1st, 2nd, and most of 3rd. But towards the end of class I caught my teacher so I could talk to her about possible ways to make up my Bio homework. I'm about 2 chapters worth of work behind...

I wondered at the possibility of me doing like, an awesome poster board highlighting the outline and then detailing the info in Chapter 1, the chapter I missed completely due to the frequent attacks while on the Lamictal. My concern was in that I'm now two-three assessments behind, and I'm worried about being able to catch up on time if all I can do is the assigned bookwork and labs. That's why I proposed said awesome poster board.

She told me that while it was a good idea, she felt that I really needed to do the P&P's and such for Chapter 1, which means like, at least a week of work at this point.

I'll be honest. I was stressed. Out of my mind actually. The whole, "OMG I'm never going to get caught back up in my classes, therefore not be able to graduate on time, therefore fail at life" thing came on. (BTW I'm not saying anything against whether people graduate HS on time or get their GED, but for me, that's a personal requirement.)

So, I needed to calm down. And blow my nose. So I asked to 'step' outside the classroom. Actually, me knowing my history, I just opened the door a bit and leaned out.

Then, from what I've been told, I slipped into a fugue state. Got up out of my chair, and headed for the stairs. (I was in a third floor class.) Now, this is where it gets scary. We don't know if I actually fell down the stairs, or had an attack after I got off the stairs.

So, off to the hossy for me. And...just sucky time.

Bleh.

I was fine, just had to be checked out.




So, then we went back to the school, and I talked to Miss E, and I talked to Ms. W. She was worried, but I'm good. I'm gonna talk to the class tomorrow.


So...I have more news, but it can wait for tomorrow. I'm tired.

Night
-Bri

Not so good night.

I had a fugue state about two, three hours ago.

I was around the library or something IDK.

I had monitor pads on me, and my chest hurts just a lil bit, and I kinda sorta remember white lights. Ambulance I think/assume.

I woke up in the truck and daddy helped me inside to bed. I rested for a bit, then talked to mom for a bit.

We talked about how I've been feeling lately, how quickly my emotions change...And just talked in general. I liked that. I shared some of the stuff I've been doing with Kris with her.
She told me to stop worrying soo much about school. She said it's understandable to be stressed, especially given how important school is to me. But she said that I'm stressing a bit too much. I'm expecting much more from myself than is needed. Even though I've missed a lot, its kind of expected.

Right now I'm just going to try to focus on getting better. Really everything will work out much easier if I'm better.

Night
TTFN
-Bri

I don't understand....

What happened last night? My head has a big bruise....and scratches in a patch. My right shoulder hurts really bad.

Mom explained what happened...a little. I guess, I guess I had a fugue state. And walked for a long bit. My phone is missing, and I'm sore.

And the last thing I remember is getting ready to go to bed last night. I still hadn't changed into my PJ's.

But, the worst part is that something much worse could have happened, and I'm so scared. I just want to be fixed....this needs to be fixed now.

I need this fixed....this is crushing my family. And me.

*EDIT. We found my phone...it was at the end of someones driveway not far from where I was found. The camara screen was broken, but the lens is fine, no scratches or anything. Plus a few dents in the casing...I was planning on getting a new case anyways.

And we're looking into personal GPS locators. It's a bracelet, and gives exact location. It hasn't come out yet, but very soon.

I think the next time I have a really long attack mom and dad should just take me to Children's. Then they would help....and we wouldn't have to wait for 4-5 months. IDK...I just want something, anything.

Where's the big sign when you need it.

Ya know, the one that says "I'M FINE!!! NO PAINFUL STIMULATION. NO IVs AND YES, YOU DO KNOW ME!!"

That one.

Due to the lovely drug Lamictal, and the planned dose increase, I had another blackout attack. I was playing in the backyard with Boomer while Tori was taking pictures. Well.....sorta.

So, through a side gate I went (I haven't been through either of the side yards in almost a year)

And out to the street, a few blocks over and a few blocks up, then collapse. Then firefighters, paramedics, Medic One unit, transportation, ER.

I have bruises on my left arm from IVs, bruises on my chest from sternum rubs, and my jaw is killing me from some more painful stimulation. I know, I know, they were just doing their job. But honestly, at least one Firefighter/EMT/Medic who responds on a call has seen me. I just wish they remembered me all the times...

And we still haven't heard from Dr. H. Or Dr. S.

I want to be done...so badly. I want to give up, and some days I want to do something stupid. But, I can't. I want to figure this out, and I want to go on to help people, and have a family, and have a life...

I just wish this chapter weren't so crazy.

Well, I need sleep. I'm too tired for a shower tonight, so I'll have to get up way early to take one tomorrow morning before school

TTFN
-Bri

That's not supposed to happen.

Sooo....really rough morning. It totally didn't go how I wanted it to.

I had a "blackout attack" today.

I'm not sure what happened really...the last thing I remember is being in the elevator.
But I certainly wasn't in the elevator.

I blacked out, and left campus. I guess at about the parking garage I got out of my chair, the school patrol officer found it.

I was told that I was found about two blocks from the school. When I came around there were firefighters next to me. They had me on oxygen and they had checked my blood sugar, I can tell from the bruise on my finger. They were talking to me, and I was able to answer a few questions, but it's all really fuzzy. They took me to Mary Bridge, which is good. No IV, nothing more than putting me on monitors.

Mom and Dad came and we talked about the CD diagnosis with the doctor....he was being silly I think. He said that the nail/hair thing is "absolutely part of CD. I see it all the time" Funny thing is it's impossible to find any journal/article/study saying that nails falling off can happen with CD. It just doesn't make sense how seemingly perfectly healthy nails can come off just because I'm stressed. And if he sees it all the time, why are there no write ups about it. Isn't that something you'd want to share??

And we figured out that I have blackout attacks anytime my meds change.

I'm just confused. And tired, really really tired. I'm gonna go take a nap.

TTFN
-Bri

This is your captian speaking....

K, I know it's been like, 3 posts in the last half hour, but I've got some catching up to do.

How's about a quiz.

My Friday was spent:
(A) Getting class sheduals
(B) Lazying about the house in pyjamas eating chocolate ice cream
(C) Going on a killing spree
(D) Getting picked up by Paramedics and taken to the hospital.

If you picked A or B, give yourself a thumbs up for guessing what a normal teen girl might have been doing. If you guessed C, ask yourself why I would have a blog post about it.

If you guessed D, ding ding ding!! You're a winner winner chicken dinner!!

Guess what. I hate hospitals, especially the ER portion.

Guess what else. I have about 600,000 dollars in medical bills that prove I'M NOT FAKING!!!!

So the next time I have to be taken to the hospital, ER doctors. You know me. You know what happens to me when I enter your ER. Please, inform the idiots that I'M NOT FAKING. Please also inform them that ERs and I don't get along. I like to stay in the bed, and I like to sleep. And I don't like being poked...that makes it even harder for you, because that means more attacks for me, which means a sleepy Bri, and sleepy Bri is hard to get along with. I can deal with an IV being started, and I can deal with monitors, and I can deal with the "new people" ooh'ing and ahh'ing over me cause I'm fricking screwed up in a weird way.

But, I can't deal with ammonia packets under my nose, and I can't deal with sternum rubs, or other painful stimuli. No, I can't move. No, I won't pull away. Yes, I will feel it, and yes, when I come around, if I have had unpleasant things done I will be angry when I come out of the attack. Heck, I might even flail a bit. Be Warned.

This has been an informative post. Learn from it, so's the next time I end up in your ER it can be pleasant for all of us.

Thanks for stopping by!
-Bri