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!