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!

Elm Street

Hahaha :)

Making Me Laugh

Ahh! I forgot to tell you the funniest part about my night! It's making my speech slur just to think about it.

Of course I had to make the announcement to my friends mid-dance that we'd gotten approval for the MTV thing. So I had a bunch of alumni students or just other kids I don't really talk to wondering why I was going to be on True Life. I had to explain my 'illness' which they actually found amusing (surprise, surprise). This resulted in everyone trying to make me laugh for the rest of the night, wanting to see me fall for some reason. I guess it's hard for those who haven't seen it to understand.

After the dance I was leaving along with the chaperones and couple kids that had yet to leave. As soon as we got outside they began to goof around and tell horribly lame jokes for my sake, and just to be safe I decided to stand in the grass instead of the concrete, and they followed. As soon as my feet hit the grass, something about the absurdity of the situation made me crack up and I fell straight down to the muddy ground. I landed on my back, unable to move, a smile frozen on my face, and the horrid urge to cover my face from them as they crowded around me, calling out that I'd faked it.

Soon I was able to move and they helped me stand up and brush off, asking over and over if I was okay. So amazingly I felt okay. The only part that embarrassed me was the no-doubtedly creepy frozen smile on my face while I was down. I think it was that these kids were so understanding and eager to understand further. Plus, they were all younger than me--my brother's age--and as long as I can remember had looked up to me, so I knew nothing that I did would make them think I was a freak.

You have to admit it, even I have, that this was pretty darn hilarious and overall an end to a pretty great night :)

True Life: Narcolepsy and Cataplexy Part II

Good news: I am definitely going to be camera stalked for a week for the True Life show! I just got the call tonight that everything is all set and the producer, Brandon, will be here by tomorrow. I can't believe this actually worked out. If someone would've told me when I first saw that ad that I'd appear on any MTV episode even if just for a few minutes, I would've laughed. Mostly I'm glad that I'm helping to get the word out. I mean, that's why I want to do this at all. The more people know, the better for me and every other person out there suffering from narcolepsy and cataplexy.

So filming begins Sunday and will follow me through school next week. Let's hope for lots of laughter and awkward situations for them to film, haha :)

Tonight resulted in some killer cataplexy. I had to play my flute at a funeral memorial service for my principal's dad after school, so I was dress in a nice black skirt and top. Afterwards was a dance for the 7th through 12th graders (pre-planned before his death, let me add!) and I just decided to wear the same clothes.

I should've known that was a bad decision. My cataplexy ended up being bad that night and in the very beginning someone was cracking jokes. I quickly decided to leave the room and regain my cool but on my way out, felt my muscles go stiff and BAM, I hit the floor. Let's just say that falling flat and then having momentary muscle paralysis is NEVER good in a short skirt, so I decided once I was able to move and get up that I'd switch back to my jeans. Much safer!

Dancing turned out being hard for me. I felt like my limbs were made of jell-o as I attempted to dance with my friends, and I nearly gave up it was so hard. Good thing I didn't, because soon the weird feeling passed and I was able to hold on my own and have fun like I used to. Well, almost like I used to. I stuck close to the wall, just in case.

But there's my night! I had fun, it was definitely worth it :)

Falling and Freezing

It's so weird to me to see my 'illness' changing from day to day. One day I barely fall when I laugh, the next day I can barely stay standing. It gets worse nearly every day, which is kind of frightening as I'm sure you can imagine. Today for the first time I fell and instead of popping right back up, I was temporarily unable to move. Of course I've read about this before and I knew ahead of time that this was normal for people with cataplexy, that their muscles refuse to move for a short time after they fall. I thought I was totally cool with it, until it happened.

It's honestly kind of freaky--okay, extremely freaky--to fall and have your limbs bent at odd angles and not be able to fix it. I couldn't talk and my muscles refused to move no matter how much strength I put into it. My teachers had to help me (I was at school, great right?) and when I tried to sit up, I collapse AGAIN to the ground. So they brought me a pillow for my head and just let me relax. I have to say, I'm not really used to the muscle freezing yet, but it's happened every time since that I've fallen.

So here's to worsening symptoms! I hope it gives MTV something good to film so we can show the world what cataplexy is and why it truly isn't a laughing matter.

True Life: Narcolepsy and Cataplexy

Oh boy, have I got some news for you! I just got home from my sleep study and I got a call from the producer of the MTV show True Life, saying he’d received the e-mail I’d sent him earlier that morning between my naps and was interested in using me for the show! Now I’ve never even seen the show (we don’t have cable at my house, therefore no MTV at all) but I’ve heard about it and I know I have friends who watch it. Not too much word on what’s for sure happening now, but it may happen as soon as next week! I’ll keep you updated.

Happy Valentine's Day!

For all those who don't suffer from this condition, consider yourself lucky!
I definitely feel for this poor guy :( and am fortunate to, so far, not struggle with this trigger (although I'm only seventeen, so what would I know? haha)

http://www.theglobeandmail.com/life/the-hot-button/when-valentines-day-makes-you-sick/article1906648/

Flu Vaccines and Narcolepsy

Oh boy, more ammo on the origin of this disease:
http://www.washingtonpost.com/wp-dyn/content/article/2011/02/14/AR2011021404944.html

http://www.cbsnews.com/8301-31727_162-20031347-10391695.html


http://www.naturalnews.com/031313_swine_flu_vaccine_narcolepsy.html

Or maybe not...?

http://blogs.forbes.com/matthewherper/2011/02/04/fda-u-s-flu-shots-not-linked-to-narcolepsy/

Another Negative...

So I’ve experienced a new downfall of cataplexy (as if it needed any others!). Today my mom drove my brother and me up to Novi, Michigan to Twelve Oaks Mall so we could get in some shopping before he leaves for Italy. The kid NEEDED jeans badly and they house the nearest Abercrombie in an hours radius of our house. Well walking into the mall, Bailey and my mom kept joking around and laughing. So I knowingly veered away, trying to control myself. But then they started going “Where’s Julie?” and “Don’t make her laugh” really loud like drunks. So of course I went down. I crumpled to my knee, twisted, and fell back flat on the cold cement in front of who knows how many strangers. And I ripped my brand new jeans right at the knee.

This was also the first time I’ve fallen in public really, and a lady came over to ask if I was okay because here is a random teenager who fell to the ground with her mom and brother standing over her and laughing. I swear the poor lady was about to call Children’s Services! But turns out she was a nurse and when we (well, my mom because I was still trying to get my limbs to work) explained that I had cataplexy, her only worry turned into if I had hit my head or not.

Level of embarrassment: 6, because she was nurse and understood.

What Is Cataplexy?

This morning, I got to explain to my high school class what is wrong with me. I started out with the narcolepsy, explaining why I fall asleep all the time and that it isn’t my fault. I also had to apologize for the depression and cranky attitude—again of which is not my fault. The harder one to explain was cataplexy. I tried to get them to understand what it was like for me by saying “You try it. Your doctor asks you what seems to be the problem and the only reply you have besides ‘I’m tired’ is ‘When I laugh my knees buckle’.’’ It’s not an easy thing to get across to anyone who hasn’t experienced it!I think they got it.

I had all fourteen set of student eyes and three raptly attentive teachers who listened and didn’t smirk or interrupt when they shouldn’t have. After, the principal asked the group (knowingly) if anyone else there had had to deal with a life-crippling disease. Alas, one girl had gotten Leukemia in the seventh through ninth grades. She was able to tell everyone how scary it is to have something you can’t explain when everyone else around you is hunky-dory. She also told them how important it was for her to remind her body that Leukemia wasn’t going to take over and define her, and how her friends got her through the day.

I really hope this helps them understand what’s going on with me. I’ll be like this from here on out so they can either deal with it or find a school free of narcoleptic/cataplectic people. I know for sure they won’t treat me different, just a little more careful and aware.

4-Wheeling on Super Bowl Sunday

So the on-going idea is that negative feelings can’t cause cat-attacks, right? Somehow, there’s got to be a positive emotion tied in there before or after the bad feelings that makes our bodies go haywire. I was watching the movie Life As We Know It with my parents tonight (you know the one with Katherine Heigl and that cute guy and their best friends die and leave them their baby but they hate each other?) and it got to the part where the best friends die and all of a sudden along with the tears trying to well in my eyes, my head kept falling down and my arms were shaking uncontrollably (thank god I was laying down!).

So this one’s got me stumped. I have no idea what kind of positive emotion I was experiencing along with the dying of this baby’s parents that triggered my cataplexy. Weird, huh? Not to mention I’ve discovered that the more tired you are, the harder it is to recover from cat-attacks. This coming from me and my mom laughing over some funny pictures I had saved on my computer just a half hour before the movie. My head kept bobbing even after I’d stopped laughing and my head was pounding like a killer migraine was settling in. It was the longest attack I’d ever experienced, damn after-shocks!

I ended up trudging over to the couch in a half-asleep daze and falling asleep for real as soon as my head touched the cushion. As soon as I woke up, snapping awake fifteen minutes later, my head felt fine and my body was back to normal. I did ask my mom a question about something my dad had said while I was asleep. This got me a strange look as a light bulb went off in my head. “I dreamed all that again, didn’t I?” I asked. Yep, sure enough; I was dreaming/hallucinating all that. Ahh the strangeness of my brain will never cease to amaze me now.

Getting up early for an EEG at the hospital tomorrow, then some blood work to confirm one hundred percentedly that I have narcolepsy. Fuuuun?

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 :)

Adrenaline 1, Cataplexy 0

Not only a week in and I think I’ve already discovered a cata-blocker! For the Super Bowl, I went to my friend Kyle Spott’s house for the game. We all (all the juniors, a sophomore, siblings, etc.) ended up on the four-wheelers outside. One second I’m terrified I’m going to fall off (first ride, you know?) and the next I realize that this is the most normal I’ve felt in months! The adrenaline was keeping my body in check, despite the fear that I would have too much fun. Like the adrenaline junkie in me needed any more impetus to pop his head out every once in a while…