Saturday, December 31, 2011

My Narcaplexy Treatments: Chiropractic Care

Since narcolepsy is a lifelong 'illness' with only a few medications that help narcaplectics fight off their symptoms, we are always finding other ways other than pill-popping to make us feel better. One thing I found fascinating when I attended the Narcolepsy Network 2011 Conference this October was the huge interest everyone took in each other's treatment. The first questions out of anyone's mouth after "Do you have narcolepsy? Cataplexy??" was "What kind of medication do you take?"

The main form of healthcare that I use that helps me is regular visits to my chiropractor, Dr. Nickalis Dumas. Without Dr. Nick, I have no idea where I would be today. 

Dr. Nick was featured in Toledo City Paper's 2009 and 2010 lists of the city's best doctors, and as a runner-up in 2011.
I owe so much to him and his staff for taking care of me and treating me like I'm family (and for my family for convincing me to go for that first visit despite my doubts!). Check out his practice, Rapid Relief Chiropractic Center in Toledo, OH:

Rapid Relief Chiropractic Center

Monday, December 26, 2011

Happy Holidays!

I'm a little late here, but Happy Holidays to everyone who celebrates something this month! Truly that qualifies pretty much everybody, even atheists (since pretty everyone rings in the New Year one way or another), but to any who don't, I hope you still enjoy your break from work and school :) I myself celebrated both Christmas and Chanukah with my family, and I had a very wonderful holiday(s)!

Monday, December 12, 2011

Therapy Dogs: Not Just for The Blind Anymore

At the 2011 Narcolepsy Network Patient Conference, we almost had the chance to meet one of these awesome dogs. Check out this short article about them... I want a narcolepsy therapy dog now! :D
Getting to Know... a therapy dog - Times Bulletin - Van Wert, Ohio:

'via Blog this'

Thursday, November 24, 2011

Happy Thanksgiving!

Happy Thanksgiving to everyone!

I hope you all enjoyed a wonderful day with family and friends and lots of yummy food :)

And for anyone Black Friday shopping I wish you good luck; you won't catch me lining up at Best Buy tonight... I have to work at 7am tomorrow, so wish ME luck and wakefulness for my whole eight hour shift full of hungry tired shoppers.

I had a great day with my family and friends! I for one am thankful for many things this holiday season. My health and the health of my friends with and without Narcaplexy, my family for being supportive of me every day with my sleepiness struggles and regular teenager-in-her-senior-year sturggles, my friends for keeping me awake and making me laugh until I have cataplexy attacks... then making sure I'm okay and making me laugh some more, and everything else that's going well in my life.

What are you thankful for?

Saturday, November 19, 2011

Vote for the Narcolepsy Network

Hey Facebookers,
Take a few minutes of your time and help a cause that needs your support! Vote for the Narcolepsy Network to win funding to help with Narcaplexy research, education, and and prevention!
*Quoted from an e-mail I recieved from the Narcolepsy Network*
We need you to help Narcolepsy Network get a share of the $3,000,000 being offered to non-profit organizations by Chase Community Giving.  It will not cost you anything except a few minutes of your time.

To help us get this funding all you need to do is log onto your Facebook account, find the Chase Community Giving page, search for Narcolepsy Network and cast your vote.  I also urge you to contact all of your Facebook friends and anyone else you know and ask them to vote for Narcolepsy Network to get this much needed money.

We can use these funds to:
  • Create and promote public and professional communication and awareness campaigns about Narcolepsy, Hypersomnia and related Sleep Disorders
  • Advocate for people who struggle to live and support themselves while dealing with these disorders
  • Fund research into the causes, prevention, diagnosis and treatments for these serious conditions
  • Educate physicians, nurses, teachers, public safety workers and many others about Sleep Disorders
  • Foster support for people with these illnesses and those who care for them and about them.
Please act now, voting closes on November 22, 2011.

Ramon Werbeach
Vice President,
Board of Trustees,
Narcolepsy Network

VOTE HERE and ask your friends to vote too! Thank you so much for your support!
Chase Community Giving

Wednesday, November 16, 2011

Julie Flygare Talks About Life With Narcaplexy on NBC!

You've read my posts about Julie Flygare a.k.a. the REM Runner before (Meeting The "Other Julie"), and now she's found her way back into the spotlight once again, finding new ways to educate the world about Narcolepsy and Cataplexy. On paper, you never would guess that she struggles with anything other than deciding what amazing thing she should accomplish next. From marathon running to memoir writing, she pretty much does it all! Watch her latest Narcaplexy awareness effort here; an interview she recently did with NBC News. Then make sure you check out her blog--she always has something interesting to talk about there :) 

Monday, November 14, 2011

Just Received My ACT Scores!

GOOD NEWS!! I got my old ACT score back! Last March after I got back from Italy (so about 2 and a half weeks after the initial MTV filming, with the sledding and bowling alley and such) I took the ACT like all 11th grade students do. My score unfortunately dropped four points from the 27 composite I'd gotten in Spring of my Sophomore year. I was absolutely crushed, especially because I know I could do better if my school district gave me an IEP like my neurologist 'prescribed'. So after some time and more drugs, I tried again  and here is my result! I'm so excited! :D

I know this still isn't so stellar. I mean, the English score is ONE POINT AWAY FROM PERFECT! But Science (the LAST test of the day, so I was kind of out of it...) could definitely use improvement.

Oh well, let's just hope it's enough for Baldwin-Wallace College!

Wednesday, November 9, 2011

Watch It Online Now!

Woohoo! I finally got to watch True Life: I Have Narcolepsy! I think MTV did a great job of putting it all together; thanks guys! So check it out below and let me know YOUR thoughts on it.

Tuesday, November 1, 2011

True Life Airing Again on Saturday!

FINALLY! True Life: I Have Narcolepsy (co-starring me :D) will air on MTV again this Saturday November 5th at 3pm! Set your DVRs everyone! :)

I, ONCE AGAIN, will be unable to see it--I work from 3-10pm on Saturday! Maybe I'm not meant to see myself on television... :(

*subject to change, knowing MTV*

Happy Halloween! (for you, at least...)

So I for one think that Halloween is the most amazing holiday ever. Anyone else with me? It's the only day of the year that it's acceptable to dress up in costumes and party all night long (or go door-to-door asking strangers for candy, if you're in that age group or will do anything for sugar). I hope everyone had a great night last night; all weekend for that matter! I'd love to say this Halloween made up for last year's crappy one (it was right after my car accident and I had Acute Stress Disorder  (pre-PTSD) and was depressed like crazy) but this year's wasn't too great.

I took my last methylphenidate (Concerta) Sunday morning at work and knew that I was in for trouble on Monday. Because it's such a controlled substance, my mom has to call it in to the clinic and wait a few days until they call her back that the prescription is ready. Then they have to see her ID to prove its her, and they close at like 5! So even though I warned her a week ahead of time that I was running low, she couldn't pick it up yet.

Monday morning I felt okay at first, eager for Halloween (I was a witch) but by 9:30 my eyesight was getting blurry and my focus was slipping. By 10:30 I was snappy and depressed, sleeping through classes and eventually by 4:00, crying over EVERYTHING. I felt so miserable and broken without my medicine, I can't believe one missed day could affect me so much. Thank goodness, mom saved the day and after she left the ER (she has MRSA under her skin, yuckk) she picked up her meds, mine, and was waiting with them when I got out of my college psychology class (that I completely slept through!).

But on a lighter note, I feel SO much better today :)

Wednesday, October 19, 2011

Meeting "The Other Julie"

As I mentioned before, the conference in Las Vegas was full of Narcoleptics young and old, each with their own story to share. One woman who really struck me as a truly amazing person was Julie Flygare, a woman with Narcaplexy who has devoted her life to being an advocate for this disorder. She ran the Boston Marathon for the group Wake Up Narcolepsy in April 2010 which raised money for Narcolepsy research, worked with Harvard Medical School to create an informative Narcolepsy video to be shown to all of its students, and has a blog where she keeps her fans updated on her daily trials being an advocate for Narcolepsy and her work on her memoir.

I attended two of Julie's sessions at the conference; one about blogging and the other about advocacy. It was almost like hearing a motivational speaker, I imagine. She was so inspirational and made me want to tell go tell every person in the casino about Narcaplexy (now THAT would give Narcaplexy a weird reputation!). I still can't believe that I spoke with her, and then she asked to take a picture with me for her blog! That was a pretty great moment for me :)

And then to make things even crazier, my True Life episode, True Life: I Have Narcolepsy, aired on the 18th! They changed it on me at the last minute so I haven't even seen it yet :( I was flying home from Las Vegas when it premiered. So if you didn't get the memo and missed it, be sure to watch out for reruns or when it gets posted on MTV's website.

Friday, October 14, 2011

Cataplexy Man

Today is the first time that I've ever met another Narcoleptic person besides myself! Not just one either, I met so many Narcoleptics today it was just so surreal. I'm excited for the actuall conference to start tomorrow, to hear what these speakers have to say. Hopefully after this week I will have made some new friends and have a better understanding of my illness and how to help others :)

BTW, this is my new favorite dude "Cataplexy Man''. He was a gift from someone at the NN conference and he falls just like most of us! Haha check out why he's so special below:

Thursday, October 13, 2011

Viva Las Vegas!

So today instead of looking out my window at my neighbor's backyard, I can look outside my 14th floor hotel room and see the beautiful Rocky Mountains across the skyline (I even took a webcam picture for you!). I'm in Las Vegas, Nevada for the annual Narcolepsy Network Conference! This will be my first conference, as I'm a new patient, and no words can describe how excited I am.

This will be the first time I ever meet another person with Narcolepsy or Cataplexy, and not just one, but a whole conference full of them! I know for sure a little Cataplexy attack is in my future when I meet these people, but it's so worth it. So wish me luck! I'll post again tonight and tell you how it goes :)

Monday, October 3, 2011

Let's Hope for a Happier Healthier Senior Year

Since I've been back in school for a month now, I should definitely get back into posting! I sort of left it all hanging last May, but my parents are so old-school that we don't even have interent access at home and wifi around here is a joke. Not to mention my precious laptop finally kicked the bucket at the end of last school year, leaving me computer-less all summer :(

I was thinking about my life just the other day as I was rolling silverware after work (yes, there's something new, I have a job now!). A few of us were hanging in the club room where we were having a staff meeting later, rolling bins full of silverware after a busy morning and long 6+ hour shifts. They were telling me about past fights at the restaurant and teasing one of the dishwashers; everyone, even me, laughing and enjoying being there. The situation I was in probably seems like no big deal at all; anyone reading this who doesn't have  arcolepsy with or without cataplexy or doesn't deal with someone with either of those every day probably doesn't see the complete amazingness, for search of a better word, of this story.

If you know anything about narcolepsy at all, then you can probably see what I'm getting at. Less than a year ago around February or March, I wouldn't have been able to stay awake for such a long work shift; I would've at least passed out face first into my silverware rolls. I wouldn't have to been able to laugh with everyone or even smile at the conversation around me without having a full-blown fall-to-the-ground-paralyzed cataplexy attack. Even meeting my new coworkers would've sent me to the floor and no manager in his right mind, not even mine, would hire someone as ill and depressed as I was for the second half of my junior year. That I was even there was a miracle unto itself, one that I couldn't even imagine ever happening six months ago.

I know you've missed a lot of the story. If I'm this much better after six months, what did I do? What kind of drugs are they giving me? Was it all a misdiagnosis as it can be a lot of the time? For a while I was hoping for that, but tests proved that it was only my wishful thinking: I have narcolepsy and cataplexy (or as I 'fondly' call it, narcaplexy) and I will have it for the rest of my life. Through my senior year, my college career, and whatever happens after that, it will be the black cloud hanging around me and those close to me. I'd like to say that I know what my future holds for me, but narcaplexy has changed my perspective on almost everything, so who knows!

I will say as a final note for today that although I call it my 'black cloud' I don't want to mean it that way. I want narcaplexy to be a good change in my life, something that I may have to live with but I don't have to suffer with. It doesn't just affect me but everyone around me, and most people with narcaplexy try their hardest to hide it and themselves away from the world, hoping to keep it hidden. Heck yes, it's embarrassing to have cataplexy attacks and to have to fit my life around a sleep schedule, but its a part me that I am learning to accept more and more every day, and I want to make it my goal to help everyone else learn to accept as well, those with it and without it.

So a thank you to everyone at work who have been amazingly cool about it, and thank you to my friends who have been to hell and thankfully back with me, and thank you to my parents for trying to keep a smile when I know its a fake one sometimes, and thank you to my doctors for listening to what I think is best for me, and thank you to everyone new that I've met since then that has shown me that it's not a thing to be afraid to share. I owe so much to those that are in my life right now, because they have to deal with narcaplexy right along with me.

My life has been changed for what I can almost say is the better and every day and every challege I overcome from laughing with my insane friends for hours without falling to waiting tables for hours without spilling food on my customers or falling asleep on my break, is something to celebrate and share with the world, so thank YOU for listening to it all.

P.S. I promise I'll be posting much more often now!

Tuesday, May 31, 2011

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!

Wednesday, April 13, 2011

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...

Tuesday, March 29, 2011

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!

Thursday, March 17, 2011

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.

Wednesday, March 16, 2011


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!

Sunday, February 27, 2011

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!

Thursday, February 24, 2011

In The Words of Jimmy Kimmel...

What It Feels 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:

Wednesday, February 23, 2011

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.

Monday, February 21, 2011

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!

Friday, February 18, 2011

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.

Wednesday, February 16, 2011

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.

Saturday, February 12, 2011

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.

Friday, February 11, 2011

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.

Wednesday, February 9, 2011

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…