Wednesday, October 19, 2011

Meeting "The Other Julie"

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

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

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

Friday, October 14, 2011

Cataplexy Man

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

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

Thursday, October 13, 2011

Viva Las Vegas!

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

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

Monday, October 3, 2011

Let's Hope for a Happier Healthier Senior Year

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

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

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

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

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

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

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

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