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!

My Diagnosis: Narcolepsy with Cataplexy.

Well it's official. As of last Thursday, my neurologist diagnosed me with narcolepsy and cataplexy. After a few months of symptoms including but not limited to:

- sleeping in school (and all day)
- trouble sleeping at night
- horrid nightmares
- collapsing when I laugh
- collapsing whenever I feel emotions

... several types of blood work, an MRI, four EKGs, and so many doctors that I lost track, this doctor was able to tell me what was wrong in about three minutes of meeting me. Boy, do I wish I had met him back in November.

What now? Well that's a good question. My life is definitely going to work out differently than I'd originally planned. College will be a bit harder, medical school will be BRUTAL, and then even after I may not be able to become what I want to be--an anesthesiologist. On the bright side: I'm alive. I suppose if I'd been killed by that car accident in November I wouldn't have to deal with this... but I'd be dead, and that would suck as well.

I still get to go to Italy in March (where I will celebrate my 17th birthday!) and then as soon as I get home, it's time to start medication. The wonderful concoction of stimulants and anti-depressants are going to take a toll on my mind mid-junior year, but what choise do I have?

So tomorrow I'm getting an EEG and then some bloodwork, on Monday night I'm going to the hospital for an overnight sleepstudy, Tuesday when I wake up it'll be daytime sleep testing, and on top of all that we STILL have to schedule the spinal tap that I volunteered to get for Stanford's research. Worse than all of that? On Friday morning I get to explain to my high school class what's wrong with me and what to do if I collapse in the middle of the hallway one day. Wish me luck...

That's where I stand. The reason I made this blog is so that I can hopefully talk to others that have the same thing as me and we can help each other learn how to deal with our issue. Mostly I just needed some private therapy--these teenagers suck on the sympathy level, you know. I want my life to go back to normal. I want to be happy again and have fun, and maybe turn this life sentence into something helpful and change the world somehow. There's nothing in the sleep disorder books that says I can't do that :)