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The ACT *shudders*

While I know I really should tell you all about Italy... I don't want to. It was awesome, sure, but I was soooo tired the entire time and there were a bunch of bad cat-attacks and arguments with the chaperones and that zombie-like-stage where I'm "awake" but "asleep"? Yeah, despite it all, there was a lot I kind of don't want to blog about for the whole world to have in their memory bank forever, so let's leave it at 'I learned a lot and had tons of fun', k?

Today was Day 3, of standardized testing for the Juniors. If you can't figure this one out on your own, narcolepsy + timed examinations = not a good combination. Tuesday was the worst with the ACT+writing on the schedule. I know my score is gonna suck. I did NOT want to take it again. I mean, this is my SIXTH ACT, the first being in 6th grade. My last one I took in early February and my score dropped a point. That's like a knife through the heart when my goal was a 29! Knowing that the ACT, something that has been so important to me since elementary school, is affected by this... it's seriously the worst feeling in the world.

So there's why I'm not up to sharing my latest happenings. They have me wondering what the hell is left that's normal for me.

Whoops

So I haven't posted in a while but this is only because I just recently got home from Winter Break in Italy on Sunday! Yeah, it definitely is an amazing way to spend your break from school, especially considering I got to celebrate my 17th birthday in Florence! It feels great to be this old :) nearly an adult yet still naive enough to get away with stuff ;D

Narcolepsy Update: I actually started medication on February 28th and have been trying to make it work ever since. I think I'm less tired, I don't know. My Dr. claims that he thinks Xyrem would help me too. In case you don't know, Xyrem is the legal prescription dosage of GHB, a.k.a. the date rape drug. Needless to say, I do NOT want to go on that stuff! But my mom and my neurologist keep going on and on about the benefits of Xyrem. Excuse me if it doesn't seem worth a full night's sleep to risk G-d knows what that drug does to me. I sure hope things work out in my favor, especially since I can't drive...

That one sure hurts the most. I love my car, my license, my freedom, blaring my stereo as I drive home from the gym or a party late at night in the summer, etc. Now my mom drives my car (although while i was gone she basically broke it for good *sniffles*), I have to rely on my parents and friends to drive me, and I have no idea when I'll be allowed behind the wheel again. This medicine better start working for real awfully soon.

College presentation in speech today... Wish me luck!

Great Night

I think last night was the most fun I have had in a very long time. Some friends and I went bowling Saturday night and saying I spent the night on the floor wouldn't be an exaggeration! I experienced my longest cataplexy attack yet, in which I was barely sitting and couldn't stand for twenty straight minutes because my friends were making me laugh so much. It was so worth it though. It made me realize that these friends are the ones that are there for me the most, no matter how rough it gets. And I gotta say, it doesn't hurt when the guy I like is all for being my shoulder to hold onto during an attack ;)

So all in all, a truly great night. One that I am way too tired to elaborate on!

In The Words of Jimmy Kimmel...

What It Feels Like...to Have Narcolepsy

By Jimmy Kimmel, 35, host of Jimmy Kimmel Live, as told to Brendan Vaughan

Truth be told, I'd rather have narcolepsy than not have it. When I get on a flight to Vegas, I'll fall asleep before the plane takes off and wake up after it's landed. I'm always very close to sleep. [Yawns]

I had no idea I had it until recently. All I knew about narcolepsy was a character on Hill Street Blues, Vic Hitler the Narcoleptic Comic, who would fall asleep in the middle of his act. But I did know that every afternoon between about three and six, I would get very tired for no reason. I would doze off in meetings, watching TV, even driving. You know how when you're regular tired, your whole body is tired? With narcolepsy, just the inside of your head is tired. It's like somebody's gently sitting on your brain. You have almost no focus. All you're thinking about is not falling asleep.

When I was emceeing Win Ben Stein's Money, I actually fell asleep during the show a few times. I would sit on the safe over to the side and just sort of doze off. But that was probably a combination of the narcolepsy and Ben's voice. Another time I was on the freeway in bumper-to-bumper traffic. My head was diving, then jerking back up. All of a sudden, this loud voice over a megaphone says, "Are you awake enough to drive that vehicle?" And I practically jumped out of my skin. It was the police, one lane over.

Anyway, I just always figured I wasn't getting enough sleep, so I would drink gallons of iced tea to get me through the afternoon. Finally I went to a doctor. When I told him how much iced tea I drank, he said, "What?!" He decided I was self-medicating, and he prescribed these pills called Provigil.

I have a pretty mild case with no other symptoms. Some narcoleptics experience cataplexy, which is a limpness in the arms and legs. I don't have that. I'd like to, though. It sounds great.

I've never used my narcolepsy in my work, though I do have a dream to someday use up an entire hour of television time by sleeping. Have I been approached to be the public face of narcolepsy? No, nobody wants me associated with their groups. I hope that changes, though. I would like to be to narcolepsy what Camille Grammer is to irritable-bowel syndrome.



Read more: http://www.esquire.com/features/what-it-feels-like/ESQ0803-AUG_WIFL#ixzz1FKcMwX9n

A Looooong Day...

Yesterday was a VERY long day. It started with school until 2:30, with on and off sleeping all morning. Then we had to drive to Romulus for my brother's basketball game and I slept for a bit in the car there because my cataplexy was pretty bad all day. Then it got worse; my mom and I started fighting and yelling at each other. Add stress onto tiredness, you get mid-grade cataplexy. Then I did a LOT of yelling at the game, probably had a low blood sugar, was struggling to fix the issue with the MTV's True Life thing, AND texting the guy I have a huuuuge crush on.

Stress + Tiredness = Constant mid-grade cataplexy + Excitement + Low blood sugar + MORE stress + Amusement (flirting) = BAD constant cataplexy

I mean, I could barely walk or climb stairs. It was like the night at my grandma's house when I hadn't slept at all that day and was fighting every emotion in existance. It's CRAP, I can tell you that. So after some electrolytes, protein, and sugar (Gatorade + Reece's) I felt a bit better. We ended up having dinner at a local place so Brandon could get some filming in and as soon as I hit the car, I was asleep.

Now for the WORST part. We all got home and in the house when I noticed that my cat was terrified of the penguin balloon animal a clown from the restaurant gave me. It was truly very funny and was just the impetus I needed to fall. Unfortunately I was in the dining room next to the table and cast-iron chairs, in front of the picture window, and surrounded by two china cabinets and a step down into the living room. I literally pushed away from the step and as soon as I cleared it I fell flat on my face, with my left arm cradle against my chest.

I hear a loud CRUNCHH as my chest made a noise no body should ever made and it hurt like hell. It still hurts right now, sitting at school more than 12 hours later. I have no idea what happened exactly, but this is the first time I've fallen and actually hurt myself. It's sort of scary actually, because I know my cataplexy isn't ever going to get any better, whether it's masked by medicine or not. It's all downhill from here.

Filming, Day 1

After I found out Friday night that True Life was definitely going to happen, everything else came fast like a whirlwind. Saturday night my family and I met with the producer, Brandon, and got to know basically what was going to happen. I had a few cataplexy attacks but more interestingly, got to hear about what he knew about narcolepsy and the other people he'd filmed for the show. Sunday he came over to my house and filmed a bit of us talking about my illness and doing a craft thing for school.

So today was my first day of filming for MTV's True Life. I was excited as was everyone else at my school. Brandon showed up despite the horrid weather we were slammed with the night before and everything was set... until my principal called it off. Yes, apparently a few parents were very outspoken about MTV filming at the school and some of the Board of Trustees were throwing a fit. Despite his and mine extreme pleading efforts, it was a definite no. This happened over the course of all day so the filming he DID get with my 10+ attacks is useless.

That's all I'm going to say about filming. But I did have a funny off-camera spill this morning. I was in the school lobby talking to Brandon and Bailey (my brother) when they made me laugh and I tumbled forward and then onto my back with my head bouncing on the hard floor a bit. I was fine, but the visiting family wasn't. All they saw was a 'passed out' appearing unconscious teen and a bunch of adults standing around laughing. It's good to know I can still scare people!