Narcolepsy Education Collaborative

Early this month, I was surprised and truly excited to be asked to participate in a Narcolepsy education project. My participation in the project was to attend a meeting where we reviewed and provided feedback on materials that will soon be put together to create a toolkit of information for the Narcolepsy community.

This was just one step in many that are to come before the final toolkit can be revealed, and I am more than excited to see how this will help our Narcolepsy community to grow!
(Grow by means of people with Narcolepsy becoming better informed and empowered to be self-advocates. And yes, grow by increasing awareness to hopefully help those who are undiagnosed finally get their diagnosis. While that is not something to be particularly excited about, it's still necessary!)  

These 14 representatives from the Narcolepsy community met on Nov. 7th
to review and provide feedback on a draft of the Narcolepsy toolkit materials.

Read on for the full official summary of the meeting:

"On November 7, 2015 the Narcolepsy Education Collaborative meeting assembled in Los Angeles, California to discuss and review draft toolkit materials to benefit the Narcolepsy community. 14 representatives from four Narcolepsy patient organizations, including two national groups and six patients, met to review educational toolbox materials focused on Narcolepsy. We appreciate the efforts of Global Genes and SmithSolve Communications in organizing and hosting this meeting.

Narcolepsy Network was represented by the President of the Board of Trustees, Sarah Didavide, along with multiple organization board members and volunteers. Wake Up Narcolepsy was represented by Director & Co-Founder, Monica Gow, and several other organization members. Carrie Ostrea, Manager of Patient Advocacy at Global Genes, discussed with the meeting participants what it means to be a patient advocate, the importance of collaboration and the difference just one individual can make. Carrie also discussed the potential to organize and host regional Patient Meetups focused on Narcolepsy in 2016. Participants from the national organizations collaborated and shared their feedback to the below listed toolkit materials:

• Boilerplate for advocacy organizations to use in news releases/media
• Narcolepsy Frequently Asked Questions (FAQ)
• Narcolepsy resource list
• Education Advocacy brochure, including IEP information 
• Infographic on time to diagnosis 
• Patient self-advocacy brochure
• Social media graphics and messaging

Feedback from meeting participants will be incorporated into the toolkit materials in the coming months. Once finalized, the toolkits will be distributed to Narcolepsy community members. A microsite will be launched in early 2016 and will house the toolkit materials along with other resources for the community."

Dean's List

I was so happy today when I checked my student online account. After I ended Spring semsester with a 3.5 GPA, I wasn't sure if I would qualify for Dean's List or not. I couldn't figure out if it was cumulative or based merely on that current semester.

Well I figured out out: it's definitely semester based, and I made the Dean's List at University of Toledo for Spring 2014! :D

My GPA at my last university was a pretty terrible 1.77... I say terrible because for me that really IS dreadful. In high school, I had a 3.5 overall GPA, which could've been even higher had I got been struck with narcolepsy during my junior year. 

It means a lot to me to finally have my life back on track! And it's all thanks to my friend Katie who told me last summer all about how much Xyrem was improving her quality of life and convinced me to try it too. 

Now I not only can drive again but I also have my very own car, I have a full-time job and don't even need to sneak off to nap during breaks, I'm attending college again and feeling good about it, and I'm not only doing well at school, but I managed to make Dean's List my first semester back!

So Thankful for Crystal Light!

It's a good thing Xyrem works so well at giving me a better night's sleep, because the taste almost isn't worth it...

I've heard so many different ideas of how other people with narcolepsy take their nightly doses of Xyrem. From mixing it with Gatorade, orange juice, or lemon-lime soda, to simply sucking it up and taking it plain (my least favorite option). 

The absolute best thing that I have found to cover the taste, without interfereing with the efectiveness of the dose, is to add a little liquid Crystal Light flavoring. The strawberry lemonade is definitely the best; it really covers up a lot of the bitter Xyrem taste.

 

It has 0 calories, so it won't interefere with the amount of sleep you get per dose (at least I have never noticed any differences). It just makes it so much easier to take my nightly doses, without having to mentally prepare myself and cross my fingers that I can force it down in one gulp!

Good News

So if you've read my previous posts, you know that I was doing really poorly at my first university. I took a break last fall so I could start taking Xyrem and then transferred to the University of Toledo for a fresh re-start close to home. 

The semester is just about over, and I've already received a final grade for 1 of my 4 classes...

I got an A- in my Philosophy course! Of the four classes I took, this was the one I was most concerned about (the work load was the heaviest). 

I still have to finish finals this week to get the rest of my grades in, but even this one grade shows how much I have improved academically since I started taking Xyrem :) I can't believe that I'm actually excited to look at my final grades, instead of dreading it like I did when I was struggling through school.

Cutting Prozac Out of my Daily Meds

Since Xyrem has almost stopped my cataplexy attacks, I decided last fall that I wanted to stop taking the antidepressant I started in July for cataplexy. I didn't like some of the side effects; it was making me more nervous than I already naturally am, and I learned that it can prevent weight loss which I definitely didn't want happening.

Since I work at a school and was worried about the withdrawal effects making me moody around the kids, I had to plan to stop taking them over a break. Between having surgery, longer-than-expected recovery, and turning 21, that opportunity didn't show up until spring break after Easter.

So now, it's been an entire month off of Prozac and I haven't had any weird withdrawal symptoms! All that worrying for nothing lol. There has been a small increase in cataplexy which is manageable, and, strangely enough, I'm once again having hallucinations when I sleep.

Nine months on Xyrem and I wasn't having ANY hallucinations at night or during naps like I did every time I fell asleep before Xyrem. It was a major relief! But now I'm noticing occasional hallucinations when I nap, and sleep paralysis the other night before my Xyrem had fully knocked me out, but nothing so horrible that I can't deal with. I think it's pretty interesting, and definitely not a side-effect of cutting off antidepressants that I had expected. Really, the only change I've made was cutting out my Prozac, so that has to be the culprit.

And now I'm laughing out loud at myself as I write this, because I just realized if I were to say to a non-narcoleptic that I stopped my Prozac then started hallucinating again, I'd probably get some funny looks and psychiatrist referrals. Thank god I'm part of a wonderful community of people with narcolepsy who understand what I mean! :)

Suddenly Sleepy Saturday

I received the coolest piece of mail I have ever gotten today... A proclamation from Governor Kasich officially recognizing March 7th, 2015 as Suddenly Sleepy Saturday in the state of Ohio!

Suddenly Sleepy Saturday brings National Sleep Awareness Week to an end and annually lands on the day before we change our clocks in the spring for daylight savings time. It's a day to bring awareness to narcolepsy. I like to think of it as the unofficial narcolepsy awareness day :)

Tomorrow, I'll be taking part in the SLEEP IN Challenge! I have pledged to stay in bed for 24 hours this weekend. If you'd like to learn more (or if you'd like to donate to the cause!) check out the link below:

https://www.crowdrise.com/juliefain-sleepin/fundraiser/juliefain

Stanford Sleep Center’s New Sleepy Dog

I was excited the other day when I did a Google news search for “narcolepsy” and came across this article about Stanford Center for Narcolepsy's new pet: Watson, the narcoleptic Chihuahua. 

I won't bother re-telling the details of the article, since it's really interesting and you should definitely read it for yourself. I just think it’s absolutely perfect that Dr. Mignot has this dog. The article talks about how he takes Watson with him when he is seeing his children narcoleptic patients. Dogs in general are amazing for calming people and relieving stress; but having a dog that collapses when Dr. Mignot offers him a treat and he gets excited? That’s something that these scared narcoleptic children can sort of relate to and help them understand their own cataplexy as well.

Even though I was diagnosed at 16, I can imagine that having a dog like Watson in the room with me when I was diagnosed would have helped me too. It’s a difficult situation, and it’s nice that Watson is unknowingly able to be a comfort to Dr. Mignot’s patients.

While I never got to meet Bear (Dr. Mignot's first narcoleptic dog who recently passed away), I’m hoping that someday I’ll be able to meet Watson!

Back to School (Again)

Now that I'm doing far better with Xyrem in my life, I'm ready to go back to college and finish my bachelor's degree. But I need a fresh start; going back to the same place that I struggled before wouldn't be a good idea. So on Tuesday, I'll get my new start at The University of Toledo, the college from my hometown where I grew up. 

I'm pretty excited for this fresh start. I'm looking forward to being successful in school again, like I was before I had narcolepsy. And I'm excited to be around people my own age again! It's something you don't realize is important until you're 20 and work with preschool/elementary-aged children and the staff are mostly the same staff that were there when YOU attended that school as a child. 

So wish me luck and think wakeful thoughts for me as I re-begin my college career next week as a Toledo Rocket! :)

Cheers to 2015: A New Year, A New Attitude

Looking back on 2014, I had a lot of changes happen in my life for such a short year.

Ringing in the new year last year, I had to leave my friend's annual party early due to exhaustion, which I would find out a few days later was actually mono (boy, that was NOT fun!). I was a junior at Baldwin Wallace University, getting ready to head back to campus to my sorority sisters and hoping that I would finally find success in my classes after struggling for so long. 

Six months later, I was home for the summer, terrified to tell my parents that I wouldn't be returning to BWU in the fall, and frustrated by where I was in life. I felt so stuck. Lost. It wasn't a very good time for me.

But this year, as I rang in 2015 at that same friend's house playing Cards Against Humanity with him and his roommates til well past midnight, I realized I had experienced a complete 180 degree change since the year before. We were all laughing and joking, and I was barely having cataplexy. A true miracle, where a year ago I would have been entirely incapacitated early into my favorite game. I was cheerful and excited, looking forward to starting classes at the University of Toledo in two weeks. I even drove myself and my brother home at 1 a.m., in my OWN car that I just recently financed completely on my own at only 20 years old.

So I'm looking back on 2014 as a year of great transition for me. From the very "sick", sleepy person I was at the beginning of the year, with so many struggles and fears to face before I was able to reach a stronger and happier point with these last few months. 

And I'm looking forward to 2015 with a big smile and a level of confidence that I didn't even know I was capable of! :)

Narcoleptic Babysitting?

     Since I'm starting to feel so much better, I figure it's time to start trying more of the things I've avoided since I got narcolepsy. If it were up to me, I'd be driving already, but unfortunately cars are pretty expensive and my job isn't THAT great haha. So baby-steps it is for now. 

     Tomorrow I'm going to babysit for a family at the school I work at. The mom and dad are going out for the day with friends, so I'll be at their home with their adorable little girls. One of the kids is in 1st grade, and the other is a toddler (she's 2) , but they're both total sweethearts and are so excited for me to come over.

     At first, 10:30-7ish made me super nervous and I was going to back down, for fear of getting too tired while I'm there. But after thinking on it, I realized that this is something I can totally handle! I have extra Concerta as a back up and I'll be sure to sleep in the car on the drive there and home afterwords.

     Wish me luck! :)

Taking A Break

This semester I've decided to take a much needed break from my university life to try to feel like a human being again. Can you believe it, a college narcoleptic that feels less than human?? Crazy, I know.

Things were getting to be too much for me and I was struggling with my grades pretty badly. This for the girl who always was a stellar student before getting narcolepsy is a little tough to swallow, let alone admit out loud to other people. So I mostly kept it to myself, suffered in silence, and tried to find new ways to be successful. Unfortunately that's not as easy as it sounds when your college disability office is being less than helpful and making your life harder rather than easier.

But this summer my friend Katie (another PWN) was telling me about her recent success with Xyrem, the narcolepsy "miracle drug" for many. I finally decided to give it a try... and now I am indebted to Katie forever for convincing and encouraging me to see how Xyrem could help improve my life :)

I honestly feel better than I have in years! After almost 4 years of having narcolepsy and cataplexy, with nights full of sleep paralysis, terrifying nightmares, and disturbing hypnagogic hallucinations, I feel like a new person almost. I can function almost like a normal person again, and its an amazing feeling.

So now I realize that taking a break is probably the best thing to happen to me in a long time. I am currently working at my former Montessori school, working in the office and around the school helping wherever I am needed. And in January I plan on transferring to the University of Toledo to finish my degree and feel good about the grades I earn. I'm even interested in going on to get my Master's degree as well, but let's wait until after my first good semester at UT to talk about that... :)

Back To Stay!

I've been gone for a while, but I am going to make it one of my primary summer goals to continue the upkeep on my blog. Keep your fingers crossed for me! :)

That's all for right now. That was awfully short, I know. But I'm going to jump right back in as if I never left. Here we gooo...

A New Year and A Fresh Start

I've been slacking on the blog communication, I know. But I've found some time this morning to fit in a post to update anyone who cares about how my second semester of college has been going so far :)

First off, I have a new roommate! Beckah had to return home to England unfortunately :( but my new roommate, Samantha, has turned out to be another great match for me to be living with! She just transferred from a local community college so she is a 20 year old sophomore Communication Disorders major with a Psychology minor. Although she is older than me, she is just learning to branch out from underneath the harsh restrictions her parents have held over her for so long and to become her own person so the whole college life is new to her. She's extremely shy, which shocked me at first, but we've been working on that over the past few weeks and she's gotten much better on that matter! We even went to a party at a "fraternity house" (unofficially, as we aren't allowed to have actual Greek Life housing here in Berea) this past weekend and had a blast with mostly people we hadn't met before.

My class schedule is great this semester; not a single class before 10:10am ;)

M-W-F
US Chemical Industry 10:10-11am
Social Psychology 12:45-1:50pm
English 2:05-3pm

T-Th
History of Europe II 10:10-11:15am
Professions in Psychology 6ish-8ish (only Tuesdays; starts March 18th)

Not too bad if you ask me! I have plenty of time to go to class rested, and my neurologist even added an afternoon dose of medicine to my day to help me get through my evenings. I didn't even ask for more, but once I started this semester and started taking an extra 18mg of Concerta around 1-2pm, I am extremely grateful for his suggested! It helps especially if I find I don't have time for a nap before Social Psychology and English back-to-back on those days.

- I'm still a photographer for the school yearbook. Getting paid to take pictures? Can't beat that!
- I joined a group that gives middle school kids tours of campus to get them excited about it early so they can work hard in high school.
- My boyfriend Will and I are still happily together: January 30th was our 5 month mark <3

At least now I don't feel as bad for ignoring this blog for so long :S I'll make it a point to post more soon, this is a promise! On my way to Social Psych, wish me wakeful thoughts!

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!

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 Amazon.com. Check out her website, www.julieflygare.com, 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 :)

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

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!

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

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!

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 :)