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

30 November 2008

I got 'em!

We got the coloring books today!
So tomorrow will be busy...

Up for meds at 6-6:30, then shower, then running over to Mary Bridge to drop of the donations *EEE*
Also hopefully getting a new broccoli<---(I'll explain later)
Then at about Noon, Noon-30 I'm going with Ms.E and S to go see Twilight.
Then home, then dinner at Jimmy Mac's (hopefully)
Then Church at 6:00.
Then home.


28 November 2008

Black Friday=endless

Long day. I had to get up at 6 for meds, that wasn't a change, but I couldn't go back to sleep. Pooh. Both my extra days off and I've gotten up at 6 and not been able to go back to sleep. Maybe my body LIKES getting up at 6 on the weekdays >:(

Anyhoo. We did shopping today, just Mom and I. I got all the things for gifts for family (except Mom, that'll be a secret mission) Now I don't really have to worry about Christmas shopping. WOOT!!

But now Mom deserves a badge or medal or something...she went shopping with first my Dad, then Tori, then me, then we took Tori to her dental thingy, then Ash to her friend's house, then..then home. She and Dad and us girls have had long days lol.

And, sometime this weekend I'll be getting the coloring books and bringing them to Mary Bridge. That'll be sooo fun!!

And...umm...IDK what else. Church on Sunday with Ms. E, *possibly* movies tomorrow?

Yup. It's official. I'm tired.
Haha I like this

It's what I live by.


27 November 2008

What I'm thankful for.

I'm thankful for the roof over my head.
I'm thankful that my parents are still together and love each other.
I'm thankful for my siblings.
I'm thankful for the food on my table, and the life I know I take for granted.
I'm thankful that my condition is improving.
I'm thankful for the doctors who have helped me get here.
I'm thankful for my school support system, who have helped me get so far already.
I'm thankful for the freedom to express my religion, thoughts, and diversity.
I'm thankful for the men and women who are fighting for those rights.
I'm thankful for the friends we'll be having over tonight.
I'm thankful that I know I am loved and wanted.
I'm thankful, because I know I have it good. I know things could be much worse and are for many.
I'm thankful for the people in my life who have helped us get to where we are.
I'm thankful that I now have the opportunity to give back what was once giving to us.

I don't have to think about what I'm thankful for....everything around me, or that once was, I am thankful for.
I will have the opportunity to have a future, to have a life. I will have the opportunity to be a leader, to be successful.

I love that.

What are you thankful for?

26 November 2008

I don't know WHY that's there?

Yeah...it's never comforting to hear your doctor say that after he's just cut a chunk of tissue out of your arm. Very unsettling.

I went to see Dr. S today, and he said yeah, it would be a good idea to remove it, but it wouldn't be an issue to do it there. So, down to the procedure room, and after about 15-20 min the stitches were already in and I was on my way. But not before he said that lol.
It was like, scar tissue. He said it was probably just causing interference with the nerves which is why it was hurting.

And my IEP wasn't anything special, just restating what I already knew and putting it on paperwork. I did find out that I get 15 min of counseling time a week at school, no strings attached, so if I ever need to just vent or cry or just get a break I can go down to Miss E's office and do so.

Umm...OH!! I got to WALK to the library. I love being able to say that!! I didn't think to check online first and it turned out they were closed so Ash and I just dropped off my books and sat for about 20 min then walked back home.

Then...I went to help a family friend cook but it turned out we just sat and talked for like...2 hours. Then Mom, Dad, and Ash came and got me and we did shopping then grabbed some food and now home.


So I need to clean my room, and then I reallly just want to veg for a bit.


25 November 2008

I'm tired

I am...So I didn't post yesterday.

And I'm not sure if this post will have much today.
I got to stand up today at school.(w/o the helmet) I told Mrs. B I really needed to get up and stretch and she was fine with it...I may ask to do it more often. It felt good to stand up and stretch after sitting for 3+ hours. And I found out I'm taller then Amy, my para. LOL. But you know what? She came out of the bathroom, saw me standing, and didn't freak. She just got a big smile on her face and said it was nice to see me standing. I <3>

Other than that....IDK. Not much. I'm tired. And Thanksgiving break is almost here..so that's good. And for once I have weekend plans, before the weekend lol.

Oh...I'm much closer to getting caught up in Geo. Now I'm only one chapter behind them! That's exciting for me.

Soo....more tomorrow. Promise. I have a Dr's appointment and an IEP meeting, but other then that we only have a half day so I should have more energy to do stuff.

Hey whada ya know. It had "stuff"


23 November 2008

A new experience, one step closer to the Lord

Today I met with Ms. E for coffee. While we sat and drank our caffeine, the subject of church came up, and I was invited to join her at church. I accepted, and my Mom agreed to let me go, and at 6:15 we headed out.

Tonight was a new experience. Not only did I not use my chair, which is an accident in hindsight, it was also my first time in a Catholic church in a very long time.

Everything was new, except Ms. E. I had a good time though...it's been very long since I set foot in a church, and I enjoyed it. I learned some of the hymns, learned how the mass went. I loved the sermon. To sum it up, "Be kind to everyone you meet, for we are all fighting some kind of battle." Of course it wasn't presented like that, but in layman's terms that was it.

Then, while everyone was taking Communion, I collapsed. Had an attack. *sigh*
Actually, I had two tonight. Much too much new. My body also didn't like the up-down aspect, or the heat.

But, even with all of it, I'm glad I made the decision to go. I want to go again, first chance I get.

Thank you Ms. E, for giving me the opportunity.

Thank you Lord, for protecting me and surrounding me with a friendly group of people.

Thanks, to all of my support system.

It's just a minor setback, and it won't stop me!!


22 November 2008

Dinner for four

Mom, Dad, Tori and I went out for dinner last night cause we were the only ones home. Ash is on her sailing trip and Bro works nights.

So...not much to do this weekend.

Sleep sounds good. And I have a bit of homework in Geo, but other then that I don't have anything. I think...I don't know. I want to go for a walk or something. I want some outdoor exercise.

I figured out how to fix some of the wiggly parts on my chair so that will get done this weekend. OH and I might get to go to coffee with Ms. E tomorrow!!

That's' exciting.

Well, TTFN

20 November 2008


I feel gross today. Sore and achy and stuff.

And I'm worn out. I've been doing full days of school for a while. And it's soo exhausting. I'm not used to it and either is my body. Plus I think the meds I'm on, while they are stopping the attacks, are making me run on high all day and then I'm not getting enough sleep to make up for all the energy I'm using.

My schedule got fixed today. Now I have an independent study during 3rd period and a study hall during 6th. It's going good.

I'm tired though...just worn out.

And my arm is still bugging me, I hope that maybe sometime next week I can get in to see Dr. S about it.

Well, TTFN

19 November 2008


Amazing day today. I had my appointment with Kris. Good to talk to her. Good to not have to use the chair. And Ash and I also walked down to the library without the chair!. But now I'm sore and exhausted so...

I talked to Mrs. B about what PT Lady said yesterday. She feels kinda sketchy about the going an extra month too. It's too much change at once.

Really about time for bed.

Tori's really hurting from getting her wisdom teeth pulled today. Please pray for her discomfort to end soon.


18 November 2008

Just gets worse

I remembered what PT Lady said today. She doesn't think it's safe for me to stop using my chair at school until SEMESTER!!!


And I sat at the clinic for 2-1/2 hours today for my arm, only to have the doc poke it once, and then say he couldn't help me. He referred us to a surgeon in Auburn, said that the surgeon would have to evaluate it. *Cries*

Too much.....

Mom is gonna call Dr. S and see if he can get us in; or if he feels the surgeon is the best option then send us to one in our health care system.

Yeah...just too much and too late at night to deal with this all. I just finished my homework and now I'm ready to crash. And I didn't even get to watch House. I was at the clinic....



Proposed Laws

How about one against idiocy?

My afternoon bus driver, (yet another sub) didn't have clue 1 about how to properly secure a wheelchair. She didn't even know where the tiedown locks were kept.
Some other reasons she shouldn't drive include trying to cut off a semi x2, not using turn signals, not using warning light before stopping at the railroad tracks (at least she managed that one). And quite possibly speeding. Idiot.

Yeah...I'm annoyed. Very very annoyed.

17 November 2008

New news.

So. Doctor's appointment went well...and not quite as I expected.

Where to start? At the beginning?

Well, Mom and Dad let me walk in! I didn't even know until we were on the way.

Which was awesome...the ceilings were so...low. And it was verrrry odd being in an elevator while standing. I realized I was kinda off balance when I stepped out. LOL

Then. I checked in, got weighed and measured (I'm a full inch taller then I thought I was...I'm 5' 4 1/2"!)

And we waited for Dr. H. When he came out he said he wanted to get my BP again, once when I was sitting then again while I was standing. Odd, but okay. SO we did that, then went back to his office. First of all, he knew something was up cause no chair.

Then, we looked at a different condition, not Cataplexy. Something called OI, or Orthostatic Intolerance.


Basically, it explains the attacks, as well as the hair and nails. Plus, heat is one of the known triggers for OI, while it wasn't for Cataplexy.

We're staying on the same medication, because it's used to treat OI as well as Cataplexy, and I was told to drink lots more water. So it's hard to tell which is which, what it actually is. Honestly, especially since the meds are the same, and one treatment just involves more water, I don't care.

Good thing though. I showed him my emergency info, which he liked. But he was like, "Don't put Conversion Disorder on there. First off, it's not Conversion Disorder, and I'll be changing that as your official diagnoses as soon as I know what to put in it's place. Second, the few people that actually do know what CD is almost always get it confused with malingering, I.E. doing something for secondary gain."

So. Good good.

And about the chair. He said not using it at home is fine, not using it at the movies/store/out is fine. BUT...school is another thing. He said he'd like me to push myself to see how I do without the chair, but school isn't the place to do it. After 2-3 months, then no chair at school. *SIGH* So after Christmas Break...no more chair. But Dad is gonna have to tinker with it or it's gonna fall apart soon.

So. That's all. Geo is going well, I've almost got a full other chapter done. And Intro, English, and WC are all caught up. So that's good.

Well, I'm off for now.


I met my para today. Her name is Amy and she's cool. Her being there gave me so much freedom today! During 3rd I went to to Library, where it was nice and quiet to do work. Then during 6th we went and sat outside in the sun, and walked/rolled around a bit. It was nice.
I also like the fact that she doesn't sit right up against me or anything. She sat in the back of my class and left me alone unless I asked for help. Very awesome of her.

She said she was excited too because for the most part she'll be getting paid to read a book at this point. Cause the stuff I'm doing right now is just independent work, and since we both suck at math she can't help me with that lol.

So...more stuff later after my doc's appointment.


16 November 2008

Been a while

A bit over a week actually.

Sorry for that.

Anyways...I've been doing good!! Still no attacks. My last one was on the 28th of October. I'm so excited. But guarded to. It's...I don't know. Kinda hard to explain.

If all goes well, then by Wednesday I should be able to go to the store/mall/movies/out in general with no chair.

School will be harder though. Still no para, and being able to not use the chair will take time.

Because it isn't just about me. Tomorrow I'll see Dr. H. If he says three weeks is still long enough, then at home I can stop using the chair. With school, we'll be doing something entirely different.

What will probably happen is this. After we work out a plan, I'll use the chair to get to school and go from class to class. But in the classroom I'll be able to not use the chair.

But...I'll have to talk to my classes, all of them this time. I don't think all the kids in my classes know I can walk and such, and me like, suddenly standing up would definitely confuse some of them.

SOOOOO...I don't know. I know this is kind confusing. I promise tomorrow I'll have more comprehensive post in the PM.


08 November 2008


Every day is one. Every day I face different challenges then the ones I faced the previous day.

With no attacks comes the ability to feel again. Feel freely. Feel emotion with no boundaries, and no fear of passing out.


All without passing out. All with their appropriate equals.

And it's overwhelming. For more then a year I haven't had to deal with the emotions. In the beginning I just had an attack. Towards the end I just stopped. I walked away or restrained myself for my own protection.

And now I don't have either of those endings. I have to deal with the emotions. I have to face the situations. And just like me forgetting my algebra from lack of practice, I haven't yet learned how to filter and feel correctly.

It'll take time. Lots and lots of time.
And changes.
And support.

Good thing I'll get all 3.


"I rowed ovuh!!"

Yeah..gotta love the parentals.

So I saw Dr. S Thursday about my arm. He looked at it, said the *possible* reason it isn't healing is because there is a minor Staph infection underneath the skin, which is also causing the hard lump and nerve issues.
So antibiotic for me, if it doesn't get better by the time the course is done or gets worse go back blah blah blah. I've heard that part before...

I also got a flu shot, cause the nurse's office is where sick people and Bri go lol. A just-in-case sort of thing.


I had an okay turned bad day yesterday.
I was fine 1st and 2nd, but 3rd is where the stress started and BOOM!
No I didn't have an attack...just minor emotional meltdown due to some idiot.

Being in Bio is really getting to me...I know no matter how hard I work, I won't get credit for what I do because I'm dropping the class and taking it next year. But I haven't been told it's okay for me to stop worrying about the work, to stop doing the work, so I still feel responsible for turning it in and doing well on it. Hence the stress.

And so I went to the nurse's office during lunch, and...melted a bit. I was sitting there, and I needed to use the bathroom, which itself sucks cause of the helmet, but as soon as I said I needed to go, Tori started scrambling to get her things together so she could run back there with me. I yelled at her...I was upset. I'm already as safe as I can be in there, her sitting 20 feet away doesn't help anymore. I just wanted to be alone.

I wasn't mad, although the Mrs. B (the nurse) said Tori had thought I was angry at her. I wasn't...I was upset. Mrs. B was walking me to 4th, but IDK. The thought of having to sit in a noisy room full of kids who don't take class seriously was enough to make me cry. Ball really. 4th was a scratch. I went back to Mrs. B's office and sat at the back in her office and did work. Calmed down and focused. Then went to 5th and worked on some programs. I'll take my test on Monday.

Then...6th. In 6th I've been told to not worry about the work, its basically a holding place for me right now, as we can't change my schedule yet but same with Bio I won't be earning credits. So after the teacher introduced class I asked if I could go to Mrs. B's office and do some stuff there like shredding old records. She was fine with it so that's what I did 6th.

Then when I got home, Ash and I walked (rolled) to the Library and got some books. And then sat outside for a bit. And I told the firefighters that the hose had fallen (they were filling the water tank on the truck.) I really want to be able to tell them how well I've been doing, but I didn't know either of the firefighters that came out...so it was awkward. So, next Tuesday. Cause I know the people who work on Tuesdays.

Then, prescription, dinner stuffs, home. Dinner, bed.


And today I might be going to the Library again to work on some English stuff with one of my classmates, A. I wonder if Mom will let me not use the chair. Hmmm...


05 November 2008

Very Superior

I had a good day today.

This morning we went to school early for my Special Ed meeting.
During the meeting I found out the scores of my testing.

Academics were very good, with all but my math calculation score being >12.9, meaning I tested college level on them. My math calculation score was 8.9. Which means I definitely need help in Math. Even though I've done and passed Algebra 1&2, and Geometry 1, I don't know the formulas any more, or how to work out the problems.

The IQ test said I was in the 'High Average' range for my age. A lot of the test sections I got superior or very superior on, but a few were low average, like some of the ones related to memory. Which I kinda guessed would happen.

So, it was decided that I do qualify for Special Education under the 'Health Impairment' category.

With it, my 6th period will change to a study skills class, and my 3rd will change to a lower level math class, possibly an individual instruction Algebra class, so I can relearn the Algebra skills I need while still getting caught up in Geo.

So. This is good.

After the meeting, Dad and I drove Mom to Seattle for work. Then, we waited for Bro up there so we could give him some money.
While we were waiting for Bro, we decided to just make an appointment with Dr. S tomorrow for my arm. It isn't unbearable, and the urgent care clinic is walk-in and there's no way to tell how long it might take, and we were running short on time.

So. Then we headed back to the house, stopped and got lunch on the way. We rested for a few minutes, and then went to go get Ash and Tori for our afternoon appointments.

So, I went first with Kris, so Dad could go in to Tori's dental appointment and not have to worry about me.

We talked about some stuff, mostly about how I tend to be so logical I'm not emotional...at least when it would be okay to be both.

Then...home. And once Ash got home from her appointment, we walked (rolled) to the Library. And I got to wave to the firefighters lol. I plan on stopping by next week and telling them how well it's been going. I think the attacks being under control is definitely something they would like to know.

So. That's been my day. Very very very busy lol.

I'm tired but I wanna watch my show. So I'm gonna wait for a bit before bed.


03 November 2008

Is that like doppleganger?

Sorry, random quote.

Good day.

Sore arm.

Talking to friend.

Sore arm.


Getting caught up.

Good day.

Totally not a style of poem but hey!
That's the facts.


02 November 2008


My arm still hurts pretty badly, but my ear is better. And I haven't had a single attack since Tuesday!

I'm having a hard time with writing. Typing I can do one-handed, but writing just makes my arm scream. I've been working on Bio all weekend but since half of it was done with my hurt arm and the other half with my left hand, it looks like a three year old did it. At least I was able to type the assessment and email it to my teacher. I'm gonna talk to Mrs. B tomorrow about my arm. See if she recommends anything to help while I'm in school.

But I was able to go to the mall with my Bro and his GF and Tori. I tried on a dress for Fall Formal, and it didn't look too bad while I was sitting down. But the fact that if I go I'll have to use the chair sucks.

Now I'm just gonna finish chores and proly laze all night. Or cruise the net!


01 November 2008

Am I like, cursed?

Cause a second thing brought me to the doc's today. When I woke up I had a bite on my arm, no big deal. But as I was helping move Squish and HER baby out of the big cage, these sharp pains shot up and down my arm, out from the bite.

Dad looked at it and said he wanted us to get it checked out because we weren't sure what bit me, so we went to the urgent care clinic.

The doctor there said there weren't signs of infection yet, but the fact that it was hard and made my arm muscles hurt *could* be an issue. So he prescribed a cortisone? cream, and said if it turns purple or shows signs of necrosis to go to the ER.

Right now it just hurts really bad, and I'm actually worried that it isn't a spider bite. When I raise my arm above my arm, the bump raises, like something is under the skin. Maybe I'm just being paranoid cause I broke my needle while I was sewing last night and can't find the tip. I guess we'll know in a few days.

So....yeah. Homework and chores. I'm out.


31 October 2008

Who would you reach out for?

I was just watching NUMB3RS, and this question was presented at the end towards the person Don was conversing with.

Who would you reach out for? If you were dying? The agent in the show reached for the picture of his family in his helmet. He wanted his family to be with him.

And then it hit me. I don't know who I would reach out for. But unfortunately, I'm pretty sure it wouldn't be a family member. Maybe it would be, but I have this unsettling feeling it wouldn't be.

And to be honest I don't know why.

I should want to reach out for family.

But part of me wants there to be someone else there. Someone who would be just as important to me as a family member. A significant other. I have a feeling if I were to ask Bro he would probably say Cece, his GF of three years. And Mom would be Dad, and Dad Mom.

I have no clue what to do about this feeling. I don't even fully understand it.

Guess it'll be one my mind for the next few days. Maybe talking to Kris on Wednesday will help.

Now I'm curious.
Who would you reach out for?


This is getting kinda boring.

I need new ways to say "I had an awesome attack free day."

Anyone have any suggestions?? Please please help a kid out.


30 October 2008

Did they really do that?

Well, yeah, they did.

At the Pep Assembly today, some of the teacher's danced. With 'things on wheels'.
It was.....awkward. One of the teachers did a cartwheel...good job to her.

The other dance groups were awesome!

And the drum line?? Amazing. Plus I give them props for being able to distract a gym full of high school students while a girl was being taken out of the bleachers by Medics and FF's. (It wasn't even me!!) There was totally some symbol action going on. Very cool.

And once again, I haven't had an attack today!! And I made it to all my classes, and now I have a 3 day weekend to look forward to.

I do have some homework to do though. Bleh. I'll do it tomorrow. I wanna be lazy right now.

I went to the doc's today after school for my ear. It's felt really full, like something was pressing on my ear drum from the inside for the last few days. Turns out it's actually from the cold I had earlier this week.

So you have this tube that goes from your lower throat to your middle ear. It's called the Eustachian tube. When pressure from outside raises, the Eustachian tube opens and air flows through it to equalize the pressure. That's why your ears 'pop' with changes in altitude.

When I got sick, that area at the back of my throat/nose got inflamed, blocking the Eustachian tube, so it can't open and equalize. It's called ETD, or Eustachian Tube Dysfunction.

So, I have to take Nasonex and use a saline nasal spray once a day to get the swelling to go down. That should make my ear feel better.

Other that that I'm doing good. I was actually excited to see Dr. S...It's the first time in about 2 years I've had to go to the doctor's for something completely unrelated to the attacks. And it was good to be able to let him know how I'm doing.

So. Good day. I'm out.