Update on LIFE

As you can imagine, the last few months of Junior year at a Montessori school are hectic like you wouldn't believe. This is why I've left you in the dust *wince*, sorry? I'm almost done for the year; I finish on July 10th! Considering the past eight months of my life have be absolutely miserable, I am definiltely a happy camper lately. There's nothing like glood climate to cheer me up!

Yes the stress lately has been unbelieveble. I'm now on 250mg of Nuvigil with periodic naps, only get exhausted partially through the day. A lot of this is due to that chiropractor I told you about--Nick. Dr. Nick Dumas is trained to fix the body's poblems without invading the skin at all. In doing so, he sometimes causes more pain than considered! But I can suck it up in the name of gettig healthy again. Through adjustments, vibration therapy, light therapy, glutotylons, and of course accupressure (acupncture withthout the puncture), I can now breathe normally, talk clearly and loudly 98% of the day, and laugh or a little bit with my friends.

I still have EDS for sure and I had a cataplexy attack just last Monday. But when you look at the greater picture, I know longer look like or act like a zombie! I owe so much to Nick for helping me get this far, and I only have hope for the future. I have talked to others like me and they have hope for an impovement as well, and I hope to help them at least learn to cope with their--our--illness.

Oh and the spinal tap showed my hypocretin count at 7 when it should be at 200; a definite cataplexy diagnoses. Great huh?

Now I get to go get ready for a school prformance. Wish me good luck and to all of you struggling I know what you're going through. Feel free to email me if you want. I know what it's like to feel like life's getting the best of you. Don't let it define you, as it will never be a part of you until you let it be!

P.S. I've officially decided on my college major for Fall 2012... neuroscience :) there's nothing like an experience pushing you in the direction of making a positive difference in the world!

Busy and Hopeful :)

My life's been crazy over the past few weeks! Everything has been a lot more stressful than it should be lately. Italy, conferences, more MTV, a big fundraiser, exam preparation, college, prom planning, and so many doctor's appointments. I even got a spinal tap. Yay? It was totally voluntary, for research on cataplexy that the Stanford Center for Narcolepsy is doing. They just took some cerebral spinal fluid and the researchers will see what my hypocretin level is; hopefully finding a cure as they do. It wasn't so bad, but I'd prefer to never have one again...

So MTV came back to film a bit last week to add on to their last film session. I'm used to the cameras, I just kind of want them to be gone for good so I can focus on getting better. But I guess if they don't see me at my worst, the rest of the world won't ever understand!'

As for doctors, I've been taking 100mg of a prescription stimulant for over a month and though it helps, I need more! Taking some at different times of the day would be awesome too. Whatever keeps my cataplexy at bay. Falling asleep in school sucks, but at least if I can walk through a mall or smile at a cute boy without falling down... then I can at least claim to be like your average 17 year old girl, right?

Medications suck. Luckily I might have found the solution to it all. My grandmother, Dianne, INSISTED on my mom taking me to see Dr. Nickalis Dumas. When I met with him last week he believed I just had frozen neurons in my brain and it could be reversed. Yesterday's appointment was full of revelations!

I failed the first two questions of the neurology exam; you know the easy-peasy ones where the doc says to look ahead and then follow his finger while he moves it all around your area of vision, trying to trip you up? I failed both of those tests for the first time in my life. His theory as to why is that I have neurological damage from my acicident. When that lady t-boned my poor baby (my minivan was awesome, ok?) I misaligned the top two vertebrates in my spinal column, the ones that connect to my skull, and one of those vertebrates is pulling on the protective layer that surrounds my spinal chord, keeping my nerves safe. Ever since then, a mass of blood and cerebral spinal fluid is slowly accumulating there. And let's not forget the damage my brain has suffered the mass of fluid shacking up in there.

Other Things That are Broken in my Brain:

1. breathing = Wayyy to shallow/not enough. I have to "retrain" by brain to take big breaths because my oxygen levels are dangerously low, increasing the chances of injuring my cerebellum... because that would be VERY bad.

2. balance = No wonder I;m clumsier than ever in dance class lately! I had to stand still and close my eyes: I immediately swayed all over the place.

3. zombie walk = And the hands; I can't throw a ball for my life anymore. I had to walk towards him like a zombie, arms out, and my right arm kept lowering.

So I have to see him three times a week for adjustments/therapy, do tons of exercises at home, cleanse my blood by drinking 100oz of water a day, strict diet of only organic, and if I do as I'm told, I should be able to enjoy my summer like a normal teenager again :)

I hope that's true. I hate the idea of being a medicated freak for the rest of my life...

Vote For MY Essay!

Hey, want to do me a huge favor? Pleeeease vote for my short essay on an important teacher in my life. If I get enough votes, I could be awarded $3000 towards college, which I really need! Thanks so much, pass on the link if you have some friends who wouldn't mind taking a few seconds to help me out ;) Help me win a $3,000 college scholarship. Vote for my essay!

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