Friday, December 14, 2012

Christmas Break! Do I HAVE to Leave??

I can't believe that it's been 16 whole weeks since I sat in my new dorm, eager for classes to start and my collegiate career to finally begin. Now as I write this, I'm sitting in my dorm again, waiting for my brother Bailey to come pick me up and take me home for the holidays. My first semester of college is finished, and it's gone by so fast looking back I'm surprised by and proud of all the accomplishments and changes that have happened in my life in such a short time!

Here's a brief summary of the highlights of my semester, more to help me remember than to inform you haha:
- Joined the marching band (and survived band camp as a complete rookie!)
- Met my awesome roommate, Rebekah; a.k.a. "the British bitch in room 302" haha
- Met my incredible boyfriend Will and fell for him immediately :)
- Found my home and sisters in Alpha Gamma Delta Fraternity
- Changed my major from neuroscience to psychology
- Became a photographer for the yearbook (a paying job!)
- Survived the BW Apocalypse 2012 (city-wide blackout from Hurricane Sandy)
- Became the Purchasing Coordinator for my sorority
And throughout all of this, I've met so many cool friends and got through all of my classes without pulling all of my hair out!

There's been a lot to experience, and now I'll be going back home for an entire month to be with my family again and trto survive a it back on my independence. I've gotten used to having my own schedule, walking everywhere I needed to go, living on a floor with 50+ other girls, etc.

Worst of all? My roommates' study abroad time is up, so we drove her to the airport early this morning for her flight home. Wahhh! :'( AND my boyfriend left yesterday afternoon to go home for the break as well; home for him being in Cincinnati, which is 4 whole hours away from me! (When I'm used to him being just downstairs whenever I want to see him.)

So here's to hoping I can survive one lowly month of holidays at home without cable or wifi, after I already managed one full semester of being alone at college with a foreign roommate and communal bathrooms :/

Wish me luck; I think I'll need it!

Wednesday, December 5, 2012

Wide Awake and Dreaming by Julie Flygare

I can't believe it's finally here! On December 15th, 2012, Narcaplexy advocate and REM Runner blogger Julie Flygare's memoir, Wide Awake and Dreaming, will "hit the shelves" of Check out her website,, for more information on and a few excerpts from her book.

I'm so incredibly happy for Julie and proud of all the things she has done for herself and for the entire narcolepsy community. I feel like I owe her so much for being one of the strong few to find her voice and make sure it is heard loud and clear, for the benefit of everyone living with this sleep disorder and those that have yet to be diagnosed. She is a fantastic role model, and I'm always proud to call her my friend!

Be sure to check out this book; I PROMISE it will be well worth it :)

Wednesday, October 24, 2012

Narcolepsy Network's Annual Conference

Click on the banner for more information!
This past weekend was the Narcolepsy Network's 27th Annual Patient Conference, which I had the pleasure of attending! Conveniently (for me), located in Cleveland, OH on the campus of the Cleveland Clinic, the conference's theme this year was "Banding Together Over Narcolepsy", noting the city's fame as the birthplace of rock 'n roll.

These conferences are a great way for people with narcolepsy to meet others just like them from all over the country (and even internationally from Canada and Australia this year!) and support each other. I had a fantastic time this year; same as last year, just a different city!

The speaker I was most excited to hear was the amazing Dr. Emmanuel Mignot himself; the Parisian director of the Stanford Center for Narcolepsy who is internationally recognized as having discovered the cause of narcolepsy. Just as exciting was getting to see my role model, REM Runner Julie Flygare, again after an entire year! (By the way, be sure to check out Julie's amazing essay "Sleep's Choice", recently published in SleepMatters: A Publication of the National Sleep Foundation).

Lucas and Ethan
I was so glad to see all my "sleepy" friends doing well and having improved in many ways since I last saw them. Bailey from Texas has found ways to drastically minimize her horrible cataplexy and has even gotten her driver's license--much better compared to a year ago when she thought she'd never be able to drive. Cejae was the most popular attraction of the conference, with her new masseuse certification and massage chair on hand to provide some professional relaxation instead of just "homework practice" as we called her massages a year ago. I met plenty of new friends as well. There was Ethan, a junior in high school who had us laughing the whole time; Raenah and Autumn, step-sisters who were there to either learn more for herself (Raenah, the narcoleptic one) or to gain a better understanding of what her sister has to go through every day (Autumn, the non-narcoleptic one); Lucas, the soccer champ from Australia who came a long way with his family for the conference; and so many more it would take me forever to list them all!

My Public Awareness Award :)
I was so honored to be given an award from the Narcolepsy Network Board as well! The annual Public Awareness Award has been given to some great narcolepsy advocates in the past, such as advocacy devotee Julie Flygare and professional golfer Nicole Jeray. This year the award was given to three people; narcoleptic couple Katy Scruton & Robby Roden and myself, for our roles on MTV's True Life: I Have Narcolepsy. Unfortunately Katy and Robby were unable to attend the conference, so I had to make a short thirty-second impromptu "few words" by myself... To call that the most nervous moment of my life would be an understatement!

As a final note, I'd like to give a shout-out to Cassie from Oklahoma :) Her father, Larry, sent me an e-mail to tell me that he liked my blog (I have fans, like actual fans?! This e-mail totally made my day!) and told me a little about Cassie. Being a freshman in high school is hard enough, and adding narcolepsy into the equation doesn't make it any easier. Keep on smiling, Cassie, and good luck with volleyball!

I suck at volleyball now thanks to my cataplexy making my arms go weak when I try to hit the ball, but I still play with friends and make an absolute FOOL of myself! :D

Wednesday, September 26, 2012

63 Sisters, 2 Truths, & 1 Lie

Getting pumped for Homecoming!
 Joining a sorority was a big move for me. Being around 50-60 girls I am already beginning to think of as my family, creates strong bonds and makes for a lot of fun time spent together. For Alpha Gamma Delta (the Gams), this typically includes a lot of obnoxious unnecessary laughter and jokes. For a cataplectic, this typically includes body paralysis, usually partial but sometimes the whole big deal.

I knew I'd soon have to tell my new sisters about me; they need to know if they're going to be a part of my life through college and the rest of my future. But I hadn't quite thought of how to bring the subject up and explain to everyone at once. My Resident Assistants hadn't even been told yet, whoops... I was going to put the thought away for later when my sisters suggested as we were getting to know each other after Bid Day, that we play Two Truths and a Lie.

My grandparents' Haunted House in Mansfield, Ohio.
When my turn was up I was fully prepared. My three statements were:

1) I love raccoons.
2) My family owns and runs a haunted house.
3) I have my own show on MTV.

Of course everyone thought I lying about the last one, but I shook my head and laughed a bit, telling them how much I hate and am terrified of raccoons. Before I could even begin to explain the MTV deal, a few girls made the connection. They asked me if I slept on TV, between a few "oh-my-gods" and "no ways". And I then got to explain to nearly all of my curious new sisters at once, what narcolepsy and cataplexy are and what to do if I had an attack.

It was the easiest, painless way I've ever had to tell somebody about my narcaplexy and I'm so glad they were understanding. I really do have the best sisters a girl could ever ask for!

Sunday, September 23, 2012

Going Greek: ΑΓΔ

The "baby squirrels" of ΑΓΔ

Had anybody told me told me that I would someday join a college sorority, I would've laughed and called them crazy. I had never imagined myself wearing some crazy letters no one could ever read and calling 50 girls I don't even know "my sisters". But as of today I can officially say that I am a proud baby squirrel for ΑΓΔ, Alpha Gamma Delta!

Having to stand in front of hundreds of sorority girls and a ton of fraternity guys as they read off your name and chapter affiliation for the first time is a complete whirlwind. The sisters rush forward when they hear your name and their letters put together and hug you, spin you around, scream at you, anything they decide to do in the spur of the moment before dragging you off to meet your sisters. For any girl, that's insane. For a cataplectic, that's detrimental. 

I was terrified of falling in front of everyone, terrified of freaking out all of Greek Life here. But what option did I have? My flush of excitement and emotions pulled through, and when I heard my name I couldn't even deciphers any of the emotions in my head. I was able to easily hug my sisters, jump up and down like a giddy girl, and even walk the 15 feet back to where the Gams were hanging out cheering us on. I was amazingly all right!

So that's my story for tonight. I've joined the funniest sorority on campus known for joking around all the time and finding humor in the smallest little things, and I have a cataplexy. 

Sounds like an interesting combination, hmmm? 

Preference Night 2012 - Green Group

Tuesday, September 11, 2012

Band Camp Didn't Have a Lesson For This...

College football is pretty big in the U.S.; it doesn't take a genius to notice how much it captures the entire attention of our country. There's high school and NFL teams too, but something about college football just makes the year seem whole. Growing up in Toledo by the University of Toledo, I know all about our blue and gold themed Rockets. The Rockets are actually awesome, they've beaten Michigan a few years ago and always play a few big teams from out of their division. Bowling Green State University with their orange and brown Falcons aren't bad either, and are also within and hour from my house.

Basically, growing up in a college town with good football and crossing into Michigan for school every day where the Ohio State University Buckeyes and University of Michigan Wolverines' massive rivalry rule the region every November has made me a seasoned college football fan. Since my high school was so small, I never went to a game on Friday night's like the entirety of Monroe County Michigan seems to do this time of year. I haven't been to ANY football games, on any level. Or, I hadn't until this past weekend.

My new school, Baldwin Wallace University is home to the Division III Yellow Jackets. Brown and gold is adorns the campus and its students almost like a cult, and sports are a big recreational thing here. As a freshman in the marching band with a football obsession and similar family members, to say I was overexcited for Saturday's game would be an understatement. Add in the fact that I'm sort of seeing a guy on the team, and even the Black Plague couldn't keep me away from going to that game!

Marching band was another first for me. Everyone else in the band marched for their high schools for most of their four years before this. Me? I've never taken so much as a step away from my chair and music stand on the stage during our high school performances. The bulky uniform, silly hats with the feathers on top, weird way of roll-step walking in an even line with the beat of the drumline while we played our instruments, and especially the bizarre lingo was ALL new to me. Standing and playing my flute was one thing that I'd noticed was going to be an issue as soon as I was diagnosed with cataplexy; silly me never thought about that when I signed up for marching band.

Despite my fears, Saturday was fantastic! I remembered my positions and kept my roll-steps in check, I mostly remembered all my music in my head and kept my wrong notes at a low volume...

Marching outside the stadium leading the fans into the game and hearing the hollers and cheers of the fans tailgating in the parking lot, shouting "Kill 'em, Yellow Jackets!" and seeing all the proud parents taking pictures of us as we walked by left me holding back obnoxious giggles and gripping my flute for dear life, trying to hold off the cataplexy that was teasing me, threatening to cause a scene.

That dizzying feeling of pride and anticipation when the team came out of the locker room shouting and making noise like only a football team can gave me a small delay in playing the fight song as they ran down the field in front of us, but as one in a band of 100+ it went completely unnoticed.

And I somehow got through the pre-game show and half-time show without any cataplexy incidence. Even though the excitement of being at my first football game was coursing through my veins, with the nerves of being on the field in front of all those people, including my mom, representing my school as a part of the band. 

Even walking into the stadium as the teams were warming up, seeing the boys in their uniforms and searching the jersey numbers anxiously despite telling myself not to; looking for MY guy, #71, even though I knew that spotting him would just send a jolt of SOMETHING through me, with a wave of cataplexy following directly behind. Lucky for me, I didn't find him until I was safely seated in the stands, but that didn't stop the cataplexy from poking at me as I marched through the pre-show and around the stadium as the team ran in for kick-off.

Despite all that I held my own and got through the entire game. Our boys won, of course! 45-13, I believe. and my guy won with the Junior Varsity on Sunday as well against Case Western Reserve, but that was an away game so I didn't get to see that one.

I think I'll do well in marching band. The first game was the hardest and I'm sure the giddy excitement will wear off as the season goes on; maybe even the butterflies from knowing I'm being watched while I march by one certain player on the team. Playing at Disney World in January? That's a whole other story, but I have hopes of taming my cataplexy a bit more by then!

Sunday, September 2, 2012

Narcaplexy 101: Dating in College

I've had quite the crazy first week here at college! One week of Band Camp, one week of actual classes, and the three-day weekend that Labor Day bestows upon us. In that time, I've done so much and made so many friends that it's hard to believe! My new college life is everything I'd ever hoped it to be.

While I HAVEN'T been running around off-campus housing getting ridiculously wasted from cheap alcohol and making a fool of myself like so many movies portray the average college experience to be, I HAVE made a ton of friends, been a part of some late night homework parties in the lounge, completely destroyed any resemblance of a normal healthy eating schedule that I might've had, and met a really great guy who lives in my building and definitely likes me back :)

If you know anything about the high school I went to, you'll know what I mean when I say that being in a class of 700+ freshmen is a big adjustment. My graduating class from high school? Four (4) students, including me. The campus I live on now is home to 4,000 other people my age and a bit older. You can imagine how surreal it is to me, to be able to walk to a class four blocks away from my room and not see a single familiar face. I kind of like it, really. And of course, there are lot more guys at college than there were at my high school. Guys that I live in the same building with and see every day. Any girl in this position would be excited, but a girl who graduated with only two other boys? It's more at a little-kid-in-a-candy-store level of excitement ;)

Remember that guy I wrote about in my last post? The nice guy I met in the laundry room of my building and ran into at a Weekend of Welcome dance later that night? Well right now he's eating pizza and watching Sherlock Holmes with me; our own Labor Day celebration since 2/3 of the campus has gone home until Monday.

I've spent the past week fretting about telling him about me, about my Narcaplexy and all the potentially embarrassing bits that comes with my lifetime diagnosis. How would he react to hearing that I have a constant struggle with staying awake? And what about the fact of collapsing when I experience "strong emotions"? I love laughing, any guy I'm with had to be able to make me laugh or it's just not complete for me. If we decide to make this into a relationship, thus spending a lot more time and experiences together than friends, will he be okay with having to be the one to help me when my body thinks I'm starting a dream and I collapse to the floor? Flirting alone presents a problem for me. Teasing, laughing, meeting the people in his life... The inevitable minor fighting or jealousy? Getting involved with someone creates a lot of subconscious emotions that we don't deal with everyday, and some I've probably never experienced in my life.

As an average hormonal 18-year-old girl, my muscles betray me when I so much as walk by a cute guy, let alone smiling and talking to one. What will happen with a guy that has feelings for me, feelings I return? This is all new to me; so many questions, so many answers I'll have to discover my own.

Back to my week of fretting: I was so worried of scaring him off, having him think I was a freak and deciding that the likely normal bubbly brunette he'd been dancing with the other night would be a safer bet. My friends told me not to worry, if he was as cool as I made him out to be he'd be totally accepting of me, sleep disorder and all. Just approach the subject naturally and don't make a big deal out of it. Okay, so now I had to make it as casual as a conversation about the weather or he might realize I was making a big deal of it and worry... no pressure? And all this while I had to act normal around his friends who also had no idea or they might all think I was a slurring clumsy drunk and they'd ALL avoid me. While living on a campus with 4,000 strange faces, usually coming home at night almost too tired to handle the hike upstairs to the 3rd floor. No problem, right? :S

Well I finally told him. One morning, when he came upstairs to hang out with me. I was online trying to see when True Life: I Have Narcolepsy would be on next, thinking that would be a great conversation starter. "Hey look, that's me! Yeah, the one that just fell on her face in dance class..." No such luck, so when he asked what I was up to I flat out told him what I was looking for. This began the next 10-15 minute conversation of explaining everything, and finally telling him what I'd been so scared about. He assured me not to worry, he's not so that easy to get rid of... As if I had ANY intention to! ;)

And he's sure proved to be great about it. Keeping my naps in mind and reminding me to sleep when I start to slur but have no desire to pass out for 30 minutes, watching out for my clumsiness, being cautious when he makes me laugh and stopping when I tell him to so I can regain composure. He even reminded me to take my medicine one morning when he'd noticed I hadn't! The best was when he made a disappointed comment to my roommate, Beckah, about not being able to start a tickle war with me. I laughed and promised him if he was good then I'd explain the rules of tickle wars with a cataplectic--he cheered right up!

Things truly couldn't have gone any smoother with him. I'm so glad that he's accepting and protective and mindful of my daytime sleep schedule and my limitations from cataplexy. I really feel like the luckiest girl in the world right now :)

Sunday, August 26, 2012

Narcaplexy 101: College Survival

The summer has caused me to disappear, I realize this and I really do apologize about it. No internet connection other than my super slow iPhone 3 my dad gave me because I broke my awesome Galaxy phone can barely get Google to work. Anything else is just a lost cause!

Baldwin Wallace University's Class of 2016
But today as I write out this post, I'm not anywhere near the home that I've know for the past fourteen years. My residence hall at Baldwin Wallace University, North Hall, is my new home for the semester and likely the entirety of my freshman year here at college. I've got a twin bed raised up as high as the bed posts allowed so that I could fit my mini-fridge and microwave underneath. My little wooden desk is next to my bed, with a built in lamp that I ignore and used my own special lamp with a natural white-light bulb, because yellow-y light slows your brain and makes you tired. On top of my desk sits a plasma screen TV that I haven't even gotten set up yet, and once I do I still won't know what to do with it other than watch movies--I never had actual cable at home! And my closet where my dresser is shoved into is full of everything I need, from clothes and toiletries to my narcaplexy medications and my marching band uniform, safely tucked away in a yellow garment bag and waiting for that first football game in just two weeks!

And of course, my roommate has one of each of the furniture I've listed as well, right across the room from mine. Her name is Rebekah, although she goes by Becca or George, a joke from her friends back home. Becca doesn't have a TV or fridge or microwave, not that we even needed two of each, but because she traveled much farther than I did to get here. You'd know it just by her deep British accent that she's from the UK, a foreign exchange student for the semester, maybe the year if she begs her "Uni" to let her have another semester abroad. The things Becca says are fantastic! Just hearing her talk makes me smile, amused by the strange British terms that no one understands here. According to her, a shopping cart is a "trolley", chips and "crisps", cookies are "biscuits", a hoodie is a "jumper", a t-shirt is "vest"... I could make a whole dictionary of the words she says! I even think she's beginning to brush off on me: in just the short week we've been here I've started using words like "fantastic", "precisely", "begun", and "first-year" instead of the American term "freshman". But Becca is great; she's fun and easy to get along with and we agree on a lot of things. I'm fortunate to have a great roommate :)

Another thing great about Becca is her reaction to my narcaplexy explanation. She thinks narcolepsy is really interesting and cataplexy she seems to understand on a level that most people require a lengthy explanation for. And best of all, she doesn't bring it up all the time or hardly ever, really. When I need a nap she just says okay and will continue to read her book or Skype her friends or go find her other foreign exchange student friends that she's made. And the first time I "blacked out" after little sleep and a long day of Band Camp while laying on my bed talking to her and my new sophomore friend Kassie say playing with my iPad, both girls realized I've fallen asleep and when I didn't respond to their voices, they realized it was a pass out kind of deal and that I was best left alone to sleep it off. When I came to likely just minutes later after vivid dreams of being at home and having a cataplexy attack on the floor that my brother could help me out of and I couldn't get through no matter how hard I tried, they just looked at me and smiled, asking "Did you fall asleep just now?" I don't think I could've asked for much better friends to start my year out with.

The football team: Awwww Jackets!
So you've got the gist of my experience so far: I'm loving this place without a doubt in my mind :) And I already have a million and one stories to tell you of my experiences here so far, something I'll gladly delve into once I've gotten a shower! The Greeks threw a dance for the freshmen last night that went until 1am and it was really hot and sweaty dancing with the hundreds of other excited suddenly independent members of my Class of 2016. And to top that off, I didn't even get to bed until 3:30! While at the dance, I conveniently "ran into" the new friend I made in the laundry room yesterday morning, after I had been keeping my eyes peeled for him all day ;) We spent hours together dancing, playing corn hole, walking back to our residence hall together, and doing a lot of talking. Even after we got home, we were up late in the lounge playing an impromptu game of 20 Questions and Make Fun of Americans with my roommate, and I nearly physically held my eyelids open.

So he's another story, one I'd definitely LOVE to go into more detail about ;)
But like I said, I need to grab a shower first! I can hold my thoughts and words for a little longer... Then I can go write this in the lounge instead of my dorm room and maybe I'll "run into" my new friend. He doesn't have football practice until noon, after all! :)

Wakeful thoughts and a great morning to everyone!

Monday, July 2, 2012

It's Been A While

I know I've practically fallen off the face of the Earth but I have what I think can be taken as a good reason for it. Senior year ended up being a lot more difficult than I ever thought it would be! But with summer here and college looming on the horizon, I've finally been able to put my health back on hold and turn back to my regular social life. Who would've thought that would even be an option for me?

Here's an update on me:
- My senior prom was amazing! I has a fantastic time and only ended up flat on my butt on the floor a few times, and a lot by choice but that's because it was part of the dance moves! My friends were great and helped me in my teetering 5 1/2" tall heels and floor length gown. I did have a close call though; I was lucky that I did not burn the side of my face with a curling iron when my arms went limp while doing my hair. Phew, thank god!

- I took two AP exams in school, World History and English Composition. Still waiting on those scores!

- My high school graduation was successful! :) I was scared I wouldn't make it as soon as I felt my shaky knees walking down the aisle, but I was fine. I even contained the tears that welled up in my eyes when I spoke of getting Narcaplexy in my graduation speech.
- I went to a 4H program called Expo Days at Michigan State University and was proud to make it through a camp counselor tricks and storytelling class (I didn't get to pick). And between you and me, I even had fun flirting with the guy my age that sat next to me in the storytelling class. I probably looked like a freaky druggie with my face muscles twitching when I laughed, but I never told him about my narcaplexy and felt like I successfully blended in ;)

- This week, I am in Duluth, Georgia which is right outside of Atlanta, visiting my aunt, uncle, and two daughters that I haven't seen in three years. Although the girls, Kristin is 13 and Ashley is 10, have seen me on MTV True Life: I Have Narcolepsy they have never seen me in person. But I gave them a nice glimpse when I collapsed on the wooden staircase leading down to the back yard yesterday! I was unmovable for at least 5 minutes, because I was upset that I scared the girls and was silently crying out of frustration as I lay there (narcaplexy can make you very emotional!). But all is well and I feel so much better today :)

Thanks for reading, even if I left you for so long! I'll try to post a lot this week while on vacation :)

Monday, April 16, 2012

Wake Up Narcolepsy's Marathon Runners

The Boston Marathon is one of the most renowned and largest marathon road races in the world, drawing over 20,000 participants and 500,000 spectators to Massachusetts each year. As a person who has never liked long distance running of any form, especially recently with cataplexy making it more difficult, marathons have never meant anything significant to me, other than being an insanely long distance to run! My friends on the other hand run varsity track and get a kick out of taking a two or three mile trot through the woods in between homework assignments. They see more into the Boston Marathon than I ever could, simply from their love of running.

But recently, six amazing selfless people have given me a reason to be interested in this year's race, through their incredible goals of running the marathon for a good cause. Tomorrow while struggling through another long and sleepy morning of high school, my thoughts will be with the six runners that make up the Wake Up Narcolepsy marathon team:

- neuroscientist/sleep-expert Nancy Chamberlin
- WUN co-Founder and mother of a narcoleptic child Monica Gow
- WUN board member and mother of narcoleptic child Tabitha Crawford
- uncle of narcoleptic child John Leahy
- narcolepsy supporters Ken and Kim MacAskill

Wake Up Narcolepsy
These six strong and inspiring people all have separate reasons for their determination, but the thing that remains the same is that not one if them suffers from narcolepsy personally but they all have been working hard to raise money to fund narcaplexy research at two leading narcolepsy labs in the United States. One hundred percent of the $60,000 raised by running the past two Boston Marathons, as well as all funds raised by this years' team will be split between Harvard and Stanford's narcolepsy labs for continued research into this very misunderstood field.

So in closing, I'd like to thank all six of these awesome runners for working so hard to help everyone living with narcolepsy today and in the future, including myself. I'm so grateful for all of the people who care about narcolepsy and the future of this sleep disorder. Every penny raised is more hope that researches will be able to someday cure every one of us living with narcaplexy and prevent anyone else from having to go through their lives perpetually sleepy.

Read the full press release here: Six Wake Up Narcolepsy Runners Go The Extra Mile in Support of Narcolepsy Research

Good luck, WUN marathon runners!

Sunday, April 8, 2012

Happy Easter and Passover!

Here's wishing you and those in your life a happy, healthy, and wakeful Easter and Passover holidays! :)

Tuesday, March 20, 2012

National Sleep Awareness Week 2012

In case you didn't already know,  the week of March 5-11th was the National Sleep Foundation's (NSF) National Sleep Awareness Week (NSAW), an annual week dedicated to promoting the importance of sleep.  The week intentionally falls before Daylight Savings Time, when Americans have to advance their clocks forward one hour and lose that sleep time. It's common to hear people complaining about Daylight Savings and the adjustment in their sleep schedules, which proves to be a perfect time to talk about maintaining a healthy sleep schedule for the other 364 days of the year (well since it's a Leap Year, it'd be 365 this year). Across the nation, events were held to educate everyone young and old on good sleep hygiene, the process of sleep and cycles involved, and of course various sleep disorders and their symptoms. The NSF even sponsors community events, providing sleep screening to the public.

The Saturday of this week was of particular interest to me; Suddenly Sleepy Saturday is (unofficially) referred to as Narcolepsy Awareness Day. This year the date of Suddenly Sleepy Saturday was March 10th, which also happened to be my 18th birthday! With a pretty big milestone birthday, a full year of starting to find relief from my narcaplexy with medications, and Narcolepsy Awareness Day all at this time, I had a lot to celebrate that day.

Across the country on March 10th, Suddenly Sleepy Saturday was celebrated in the only way that makes sense: by raising awareness for narcolepsy. Sleep Walks, events that were supported by the organization Wake Up Narcolepsy, were held in Washington D.C., Chicago, and Sacramento, and this year had a great turn out of participants! REM Runner blogger Julie Flygare (and my role model!) was an organizer of the event in Washington D.C. where media representatives received awards for their work with narcolepsy coverage in 2011 and a good-sized crowd of participants walked and danced their way around the National Mall. Be sure to check out Julie's blog post, When Dreams Come True - SLEEP WALK 2012, for pictures and details about the fun everyone had at Washington D.C,'s Sleep Walk 2012!

Count 'em, 18 candles! :)
Unfortunately I wasn't able to attend one of these events as my family and friends threw me a 'surprise' birthday party. But to everyone who did attend a Sleep Walk or any other narcolepsy awareness event on March 10th, I personally thank you for showing your support and speaking up for everyone dealing with narcolepsy, with or without cataplexy. Your efforts mean so much to me and the rest of the narcolepsy community!

I did what I could from right here in Toledo and posted awareness information on my Facebook and wore my Narcolepsy Network button proudly. My mom knew how excited I was for this celebration coincidence and how important narcolepsy advocacy is to me, so at my party she surprised me with a platter of narcolepsy awareness cookies! I think these might be my new favorite kind of cookie :)
My Narcolepsy Awareness birthday cookies... Thanks Mom! :)
Black ribbons are the awareness ribbon color for narcolepsy.
  The Narcolepsy Network  logo: the blue side is sleep, the orange side is all levels of wakefulness, and the inner circle represents the intermingling the two.   
My best friend Hayden and her sister Gracie with me at my birthday party :)

Wednesday, February 29, 2012

Narcaplexy Milestones: My Bowling Revenge

If you've watched True Life:I Have Narcolepsy then you've seen my experience the last time I went to Nortel Lanes which was a year ago, almost to the day. That was when my narcaplexy was at its worst, before I began taking medication and my other treatments to maintain the shred of normalcy I hoped was left in my life. I spent practically the entire time there either slumped in a chair or sitting on the floor clinging to the ball return, and MTV only showed you about 1% of the entire experience.

Well last Saturday, I went back to that bowling alley for the first time since then, with a different group of friends that make me laugh even more. My best friend Samantha who I haven't seen since Thanksgiving drove up from Georgia to visit her family and friends here in Monroe. I was severely in need of some quality fun and I got a huge dose of it, and can proudly say that I *mostly* managed to fight cataplexy, beat gravity, and avoid the ground!

So she picked me up Saturday for some mall, Chick-fil-a, Paranormal Activity 3, and cosmic bowling with our friends. I love when Sam visits, mostly because our friends are insanely funny. Like literally and completely crazy, so much so that even Sam ends up doubled over on the ground from laughing, and she's definitely not narcaplexic. As soon as I walked out of my house I felt that tight-throat weak-knee feeling hit me and I knew I'd have a long night ahead of me with trying to keep my muscle control in check.

Bowling was great and I was so proud of myself for actually managing to bowl for myself almost the entire time. Here those who have seen my True Life episode might remember my friend Kyle offering to bowl for me, because I couldn't move off the floor. I even sat on the barstools without worrying about falling off! Of course I'm not very good at bowling anymore; either from the cataplexy or the brain damage from my car accidedent, my arm muscles can get weak and randomly drop down limply, especially on my right side and I'm right-handed.

After about two hours we were done and I was grinning ear-to-ear with pride: I had conquered the bowling alley and gotten my revenge!

At least until one of the guys with us who I don't see too often, Scottie, started telling me jokes as I was climbing into the back of the car. One right after another, continuing even as I was leaning on the car and repeating "STOP" in between laughs, until I fell down onto the wet cement. It was all right though; Sam was behind me and caught me so I went down a bit more gracefully and didn't hurt myself, and he apologized and tried to help me up though I wouldn't let him. Plus, it was funny to hear her yell at him a bit once we were all safely in the car :) All in all, a really great night that was made perfect by re-found strength.

And since it was in the parking lot, I can basically say that I won, right? Yeah, I think I'll stick with that!

Wednesday, February 1, 2012

Rare Disease Day 2012

This year being a leap year, February's will have an extra day, bringing the count up from 28 days to 29 days. So with a whole extra day in the year, how will you be spending February 29th, 2012? 

To me, it will be another day to wake up, take my daily cocktail of medication, and hope that I won't feel too tired or have a bad day full of cataplexy. I'll yawn my way through a long day of school full of boring classes and try not to nap until I can leave for the day. Hopefully my teachers will be understanding but that's not likely--how can I expect them to possibly know how difficult it is for me to resist sleep? 

But it won't be just another narcaplexic day for me; it will also be the day that I will join others around the globe to raise awareness for everyone living with a rare disease, diagnosed and undiagnosed. In the United States, a rare disease is one that affects fewer than 200,000 people, and there are an estimated 30 million Americans affected by rare diseases. Struggling to find a diagnosis, information, and treatment are just a few of the things people with rare disease have to deal with, besides their medical problem itself. And unknown diseases can lead to a lot of misunderstanding when the rest of the world doesn't understand what you're suffering from either.

Rare Disease Day, a day devoted to raising awareness of these rare diseases, is taking place on February 29th, 2012, and people all over the world are going to make sure that these uncommon hidden diseases are well-spoken for. What will you do to help make some noise?

Wednesday, January 4, 2012

Happy New Year!

Happy New Year everyone! I hope everyone had a fun and safe New Year's Eve and had a blast ringing in 2012 :) I for one am SUPER EXCITED for 2012! Why? Because I'm a proud member of the Graduating Class of 2012! So you can bet that I will be trying my best to enjoy my last year in high school, before my life truly begins. I hope that you all will do the same, regardless of your age or class year! After all, the best slogan of this graduating class says it all:
The world isn't going to end, we're just taking over. - Seniors Class of 2012
Peace, love, and restfulness to you and yours for all the 2012!