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!

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.

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! :)

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... :)

Narcolepsy Network's Annual Conference

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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

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 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!

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

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!