31 December 2008

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!

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!

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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


This has been my year!

YAY for 2009!


28 December 2008

Fun day today

We went out earlier to look at a house. Mom got some shoes too.
Then, we came home. And I took a shower.

And I had church today! That's always fun!
And Ms. E and I went to Red Robin for dinner afterwards. I enjoyed it!

And...I may get to go out with her later this week, maybe.


Health wise I'm doing good, mostly. A fingernail came off last night at about 3 and woke me up.
I've lost 3 nails in the past month, which isn't out of the norm but very, very,very frustrating!



27 December 2008

New haircut!

I finally got my hairs cut!

Here's the pics:

And I got a new pair of shoes today, sneakers that don't have mesh toes!
And my momma made some yummy turkey&dumpling soup for dinner. That's about it.

26 December 2008

Good Christmas

Yesterday was fun.

We opened gifts in the morning, and my Bros GF was here for that which was awesome.

I got:
a little camcorder,
an mp3 player,
A shower spa thing,
a lap desk for school,
some mineral powder makeup,
a lamp for my room,
a hoodie and a Rascal Flatts CD,
some little things from my grandparents,
some bath things,
watercolor and drawing paper,
a blanket, and some money

A lot, I know.
I love it all.

The rest of the day was fairly quiet, we had dinner at about 6.
And I slept a bit.

So. Good Christmas,
and a new year is on the way.
Only 12 days until I'm 17!!


25 December 2008

Tidings of great joy.

"And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them, and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.For unto you is born this day in the city of David a Savior, which is Christ the Lord."

It's Christmas once again.

This time last year, I was full of hope that things would get better, and was struggling every day with the cold hard truth that they weren't.

My aunt passed away Christmas, and it hit me hard. I hadn't known her much, and that was probably the thing that got me, that I never got the opportunity. Looking through pictures of her and her husband and little boy, tears started pouring from my eyes.
"He's going to grow up not knowing his mommy, he's lost his wife, and I'll never know her". Those were the thoughts in my head as I cried over the pictures and prayed for her.

I was also having a rough time with my attacks, 3-5 a day at 30-45 min each. It was hard. Christmas Eve we had an orphan party, and I had attacks while company was over. This was SO incredibly embarrassing at the time.

Now, I've been doing much better!
No attacks for the most part. Tonight as we sat around opening our 1 present each, and as we laughed, I stayed up. I was able to laugh and laugh and laugh with my family, unrestrained.
We have a house, and we have each other.
Material gifts are nice and useful and a way to show love and affection and thought.

But I've been given the greatest gift of all, my life. And I won't ever forget that this Christmas, Christmas of 2008, I have been given my freedom and life.

Merry Christmas to all

*Edit: I was able to put a smile on a strangers face today. I made fudge with my mamma, and then wrote a card and packed up some fudge, and brought it to the fire fighters. When I handed him the fudge and told him it was for the station crew, he was so happy. You could hear the surprise in his voice!
"Well Merry Christmas to you too!"


22 December 2008

It's happening

No school. I'm going crazee.

Only two more weeks
Only two more weeks
Only two more weeks

I'm going to go immerse myself in Geometry homework and try not to think about the lack of socialization.


19 December 2008

School's OUT!

Yay for Christmas Break.

I know that probably 4 days in without school and I'll go crazy, but for now I'm still enjoying it.

Plans for today include Library(if it's open), chores, and possibly playing with the oaf outside if I feel I stand a chance against him.

Well, more to come.

17 December 2008

I'll Walk

This song hit me hard today.

Monday night, actually Tuesday morning, it was confirmed I would be staying in the ER until the morning when they could remove the needle.

I asked a nurse if Mom and Dad could go home. It wasn't that I don't love them, it wasn't that I didn't want them, it's that I didn't need them. It's hard, it's so hard.

"We were 18, it was prom night.
We had our first big fight.
She said "Pull this car over".
I did and then I told her, "I don't know what you are crying for".

I grabbed her hand, as she reached for the door.
She said, I'll walk.
Let go of my hand.Right now I'm hurt, and you don't understand.
So just be quiet.
And later we will talk.
Just leave, don't worry.
I'll walk.

It was a dark night, a black dress.
Driver never saw her, around the bend.
I never will forget the call, or driving to the hospital
when they said her legs still wouldn't move.
I cried, when I walked into her room.

She said, I'll walk.
Please come and hold my hand.
Right now I'm hurt, and I don't understand.
Lets just be quiet, and later we can talk.
Please stay, don't worry.
I'll walk.

I held her hand through everything.
The weeks and months of therapy.
And I held her hand and asked her, to be my bride.
She's dreamed from a little girl, to have her daddy bring her down the isle.
So from her wheelchair, she looks up to him and smiles.

And says, I'll walk.
Please hold my hand.
I know that this will hurt, I know you understand.
Please daddy don't cry.
This is already hard.
Let's go, don't worry.
I'll walk."

This last verse, its how I feel right now. I'm trying so hard to break out, and I know there have to be limits. I know. But I feel that some of the things Mom and Dad struggle with, like leaving the hospital on Tuesday morning, are things they have to work on. I love them dearly, without fail. But I want to grow, I want to succeed, and I want to walk.

It's hard.
I don't want them to worry.
But if they give me the opportunity,
I'll walk!


16 December 2008

Tis the season

So you know how its holiday time, and there are a lot of shiny things that kids can put in their mouths, so you have to be careful?

Well, I'm pretty sure my mom taught me that, (not to put things in my mouth that don't belong) and I'm pretty sure I forgot.

Cause I just spent the last 12 hours in the ER then had to have a sewing needle removed from my stomach wall via endoscope.


I was trying to fix the sleeve of my hoodie *again* and miscalculated how much thread I would need. So I had to get a bit more. Now I've played the needle game with my desk, and the desk usually wins. (fake wood grain is AWESOME!) So I stuck the needle in my mouth between my lips for a sec while I got more thread. Then cough, then inhale, then needle down throat.

Then ER, X-Rays, confirmation of my stupidity, little sleep, lots of IV fluids, more X-Rays, sleepy meds, woke up feeling much better!


All the FUN stuff comes to our family.

That was my day and night since last post in a nutshell.

I'm tired, and still feeling a bit crappy, so I'm gonna lay down for a bit.

(maybe later I'll even get gross and post the pics they gave us of the needle.)


15 December 2008

White Christmas

Not only is the song awesome, it looks like we might actually have a White Christmas here ourselves!

It's now 9:27 PM, and 30 degrees with snow on the ground and more on the way. School was two hours late today due to icy road conditions, and its probable that at least one more day of school this week will be affected by the weather. Not to mention the Seattle-ites who don't know what cold or snow is. "The sky is falling, the sky is falling!"

Yes, I miss the Minnesota and New York winters, where an inch of snow did not shut down the city.

But, this is life.

Here's those pics I promised:

Our pitiful snowman, about 2 ft total.

And, one of the few pics of me that I actually adore.

Taken by Tori at the Toy Run. I'll have to get some of the overheads she got, but all it looks like is a little boy took his matchbox cars and lined them up, row upon row. Approx 1,500 total cars, with each and every one bringing 1 or more toy. And the most amazing part is it all stays in area.
Toys for Tots, 2008 Toy Run. Yes ma'am I think I like that.

Alrighty folks, time for me to head off to bed.

14 December 2008

Oh boy.

Nick, Blake and L came over today. We had a blast!
We had lunch/dinner, and then it was time for presents! L got a shark blanket, a shark pillow, and a puzzle with a shark on it. See a pattern? LOL

And us kids and Mom and Dad got gifts as well. I got The Freedom Writers! I love that book!

Probably the best line by far though was from L.
He was being fussy and his dad said "Are you really gonna act like that?" After being quite for a few seconds he replied "Yesh!"

We all DIED!! It was very very cute.

So. No church today because of the weather, sad. But that's okay, I got plenty of HW done.
Now is time for bed just in case I have school tomorrow.


13 December 2008


Sleep got canceled.

But snow didn't!!

I <3 SNOW!

But it means school might be funky for this week, which is actually sad cause I want to finish some Geo stuff and other class work.


But yay snow!

And I'm gonna post pictures later.

Night all!


2008 Toy Run

We just got back from the Toy Run and it was AWESOME!!!
And kinda sucky, cause I had an attack =(
But there was such a great turn-out, and so many toys!!
And we went to dinner afterwards.
Tomorrow will be busy, we have friends coming over and I have church so.
I need sleep


12 December 2008

Somehow busy

The whole concept of posting seems to have escaped me.

And, I've been busy as well...

I was right about my grades, I have 3 C's and 3 A's. Which is very exciting.
I'm enjoying all my classes very very much.
I know what my schedule will be next semester:
1st-Health 1
2nd-Fresh English
3rd-Independent Study,Algebra
4th-Printmaking 1
6th-Study Skills

But, I realized something in the last couple of days, which my grades(and body) seem to support.
I missed two months of school, and yet I'm still on track with all my classes. What this means is not only am I doing all the daily assignments and homework that's currently being assigned, but I'm also turning in at least 1 makeup assignment in every class every day! And, I'm succeeding!
True proof that I have the capability I suppose. But, I have been pushing myself a bit too much, and have told my teachers I need to slow down, and that the makeup assignments might start slowing down until Christmas Break, just because I'm starting to struggle with this.

In the last 6 1/2 weeks, I've only had two attacks, those two at church.
But, I lost a nail from my left foot on Tuesday. Not surprised, not really, cause my nails have still been coming off, but it sucks because it seems everyone steps on it.
And, I was sick on Monday/Tuesday. Stomach thing. Fortunately I was able to keep my meds down, but it meant I had to lay low for a bit, just to be safe.
Other than that, just some stupid injuries, like slamming my shin into the stairs coming inside today.
Oh, but my arm is healing. Mrs. B says it looks good.
The only real issues I've had with it are that when I put a band aid from the school on it yesterday, I noticed that it itched really bad, so I took it off. I have like, small semi circle shaped rashes on my arm from the adhesive. Yet another one my body reacts to.

I wasn't able to go to church with Ms. E last night, but we did go shopping at "The Scary Store"
It was fun. And I got some gum and chocolate.
And on Tuesday night I went with Mom to Joann's to get the things for Cece's present.
Today Ash and I walked to the Library, yes walked.
It was also fun.
Then I went to the mall with a friend who lives in Oregon but was up for a visit, Didi.
We had a good time, just walking around and such.
I got Starbucks!! (nummy)

I've been on some crappy sort of roller coaster these last days...up and down, up and down pretty suddenly. It's actually frightening to a degree. But I know stress, and sleep have a lot to do with it. Unfortunately I can't blame it on my . If I could it wouldn't really be that big of an issue. But...IDK. I'll just chalk it up to being a teenager and get over it.

So. That's some updates for ya (Me?)

10 December 2008

I miss you

I miss you and your spirit Sammy.
I know you're watching from up there.
I love you.

08 December 2008

Hungry Hungry Hippos

Yesterday was busy!!

In the morning at about 9, us three girls and Dad left to go do Christmas shopping for mom, plus a few other things. I got her a Painted Pony, and her a magnet that says "I love my rotten, ungrateful children" *laffin*

We got home at about 2, then we had to wrap the presents and get ready for some friends. While they were here, I had to take a shower and do laundry. Then, at 6:30 Ms. E came and picked me up and we went to church. I feel silly, cause I don't really remember the mass. My brain was foggy....

One of the guys, S, from 2 weeks ago when I had the attacks, he came over to check on me and see how I was doing. He was very nice, and eager to learn about my condition. I love that.

Then, we went to Hungry Hungry Hippos. Its basically fellowship at a restaurant after mass. It was fun! And one of Ms. E's friend's son, he was so cute!!

He sat on my lap for a bit, and we colored together. When it was time to go, he gave me cuddles. It was soooo cute!


But, today I came home from school early cause I was feeling sick to my stomach, and now I've thrown up and still feel kinda gross. Ahhh...

Anyways, I have some good news. I found out from Amy today that her stay has been extended until the 19th of December. Which means no big changes until after break. Yipee.

Night all. I need sleep folks.

06 December 2008

This weekend

Hmm, sorry for that. Not posting the last few days anyways. I've been battling little sleep and homework plus the stress of a possible new para, and had been feeling nauseous as well.

Well, that's life I guess. It just sucks. Anyways, I am actually doing well, with no more attacks since those two at church. Which means that in the past 6 weeks, I've had 2, both on the same night, both short short, and both triggered, so yeah, its an accomplishment.

And, I'm doing well in school, borderline fantastic, for me anyways.
I have C's in three of my classes, and I think A's in the other 3 so YAY!!!
I'm passing everything!

And this is still with a bunch of work missing in the three I have C's in. So I'm glad. And been doing homework. Christmas Break is gonna be very helpful for me as I can get a lot if not all my missing assignments done.

So. I'm not sure. This weekend we have friends coming over on Sunday, and hopefully I can also go to church on Sunday. We'll see. Well,


03 December 2008

I'm glad I did

So, I shared my Blog with Kris today, just showed her some of the posts I had wanted to print out before our printer ran out of ink.

She said she felt good I had shared with her.

Anyways, I got to WALK to the Library today. Hee Hee. That's always good.
And yesterday I got to roll there, so exercise is good. lol

I found out some news about Amy that's making me kinda anxious. They're interviewing tomorrow, and she's not on the list....=(
We talked to some people....and it's being worked on. I just, I can't imagine having someone else. I need her. She's like, a rock for me at school. I don't want to have to deal with some one else, not when things are gonna start changing. I know she can deal with me, my personality, and when I start getting out of the chair. She knows that I'm fully capable of doing the class work, and leaves me alone to do it, unless I ASK for her help. She treats me like I'm normal and capable of things...I love that.

I don't know. I'm just..praying that things work out all right.

Well, I have to leave soon to get my stitches pulled, then go pick up mom, then hopefully church since I didn't get to go Sunday.


01 December 2008


I don't know. I'm just tired. Yesterday was fun, we did all the stuff I thought we would. Except church, but I'm going on Wednesday. And...now IDK.

I had an okay day today, but forgot my key, and didn't have all the homework I had planned on doing over the weekend done.

But I'm doing well in Geometry!

I'm just reallllly tired. I guess...I guess it's time for me to start relaxing, so I can sleep well tonight.

Well, TTFN