28 June 2009

Sorry I let it slip.

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

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

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

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

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


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

*crosses fingers, toes, and eyes*




25 June 2009

Got to hang out with Ms. E today!

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

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

Bye for now,


22 June 2009

Starlight Children's Foundation (cool fundraiser)

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

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

A Starlight Children's Foundation "Starlight Bracelet."

It's very pretty!

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

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


19 June 2009

Communication with Stanford

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

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


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


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

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

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

Which means, I need to pee more often basically.

So yeah. Good good.

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



18 June 2009

How sad is that?

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

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


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

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


BIG Step

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

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

And it went totally fine.

And I have an appointment with Dr. H tomorrow.

And I think I get to walk in.


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


Bye for now,


17 June 2009

Bad dream = Foggy day


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

And it wasn't restful sleep at all.

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

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

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

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



16 June 2009

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


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

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

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

*does a happy dance*

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

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

Hmmmmm.....Happy Post.


Schools out!

*Starts Alice Cooper*

Yup, school is done (for me anyways)

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


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

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

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

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


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

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


It's bedtime


12 June 2009

Okay now this is getting annoying.

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

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

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

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

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


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

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

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

Bye now


10 June 2009

Starbright World

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

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

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

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

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

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

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

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

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

Altavoice2, SBW user

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

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

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


08 June 2009


Yup, sick, fever still.

06 June 2009

I'm still sick, but...

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

So. I considered that an accomplishment =)


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


04 June 2009


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

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

Doesn't that just sound like a ball?

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



03 June 2009


Lots of stuff has been going on.

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

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

Now for school updates!

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

The rest of my classes are like this.

Independent Study Algebra: On Track

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

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

Study Skills: Another free study period.

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

Then summer.

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

Lots of things are up in the air.