Happy Halloween! (for you, at least...)

So I for one think that Halloween is the most amazing holiday ever. Anyone else with me? It's the only day of the year that it's acceptable to dress up in costumes and party all night long (or go door-to-door asking strangers for candy, if you're in that age group or will do anything for sugar). I hope everyone had a great night last night; all weekend for that matter! I'd love to say this Halloween made up for last year's crappy one (it was right after my car accident and I had Acute Stress Disorder  (pre-PTSD) and was depressed like crazy) but this year's wasn't too great.

I took my last methylphenidate (Concerta) Sunday morning at work and knew that I was in for trouble on Monday. Because it's such a controlled substance, my mom has to call it in to the clinic and wait a few days until they call her back that the prescription is ready. Then they have to see her ID to prove its her, and they close at like 5! So even though I warned her a week ahead of time that I was running low, she couldn't pick it up yet.

Monday morning I felt okay at first, eager for Halloween (I was a witch) but by 9:30 my eyesight was getting blurry and my focus was slipping. By 10:30 I was snappy and depressed, sleeping through classes and eventually by 4:00, crying over EVERYTHING. I felt so miserable and broken without my medicine, I can't believe one missed day could affect me so much. Thank goodness, mom saved the day and after she left the ER (she has MRSA under her skin, yuckk) she picked up her meds, mine, and was waiting with them when I got out of my college psychology class (that I completely slept through!).

But on a lighter note, I feel SO much better today :)

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.

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:

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 :)

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!

Update on LIFE

As you can imagine, the last few months of Junior year at a Montessori school are hectic like you wouldn't believe. This is why I've left you in the dust *wince*, sorry? I'm almost done for the year; I finish on July 10th! Considering the past eight months of my life have be absolutely miserable, I am definiltely a happy camper lately. There's nothing like glood climate to cheer me up!

Yes the stress lately has been unbelieveble. I'm now on 250mg of Nuvigil with periodic naps, only get exhausted partially through the day. A lot of this is due to that chiropractor I told you about--Nick. Dr. Nick Dumas is trained to fix the body's poblems without invading the skin at all. In doing so, he sometimes causes more pain than considered! But I can suck it up in the name of gettig healthy again. Through adjustments, vibration therapy, light therapy, glutotylons, and of course accupressure (acupncture withthout the puncture), I can now breathe normally, talk clearly and loudly 98% of the day, and laugh or a little bit with my friends.

I still have EDS for sure and I had a cataplexy attack just last Monday. But when you look at the greater picture, I know longer look like or act like a zombie! I owe so much to Nick for helping me get this far, and I only have hope for the future. I have talked to others like me and they have hope for an impovement as well, and I hope to help them at least learn to cope with their--our--illness.

Oh and the spinal tap showed my hypocretin count at 7 when it should be at 200; a definite cataplexy diagnoses. Great huh?

Now I get to go get ready for a school prformance. Wish me good luck and to all of you struggling I know what you're going through. Feel free to email me if you want. I know what it's like to feel like life's getting the best of you. Don't let it define you, as it will never be a part of you until you let it be!

P.S. I've officially decided on my college major for Fall 2012... neuroscience :) there's nothing like an experience pushing you in the direction of making a positive difference in the world!

Busy and Hopeful :)

My life's been crazy over the past few weeks! Everything has been a lot more stressful than it should be lately. Italy, conferences, more MTV, a big fundraiser, exam preparation, college, prom planning, and so many doctor's appointments. I even got a spinal tap. Yay? It was totally voluntary, for research on cataplexy that the Stanford Center for Narcolepsy is doing. They just took some cerebral spinal fluid and the researchers will see what my hypocretin level is; hopefully finding a cure as they do. It wasn't so bad, but I'd prefer to never have one again...

So MTV came back to film a bit last week to add on to their last film session. I'm used to the cameras, I just kind of want them to be gone for good so I can focus on getting better. But I guess if they don't see me at my worst, the rest of the world won't ever understand!'

As for doctors, I've been taking 100mg of a prescription stimulant for over a month and though it helps, I need more! Taking some at different times of the day would be awesome too. Whatever keeps my cataplexy at bay. Falling asleep in school sucks, but at least if I can walk through a mall or smile at a cute boy without falling down... then I can at least claim to be like your average 17 year old girl, right?

Medications suck. Luckily I might have found the solution to it all. My grandmother, Dianne, INSISTED on my mom taking me to see Dr. Nickalis Dumas. When I met with him last week he believed I just had frozen neurons in my brain and it could be reversed. Yesterday's appointment was full of revelations!

I failed the first two questions of the neurology exam; you know the easy-peasy ones where the doc says to look ahead and then follow his finger while he moves it all around your area of vision, trying to trip you up? I failed both of those tests for the first time in my life. His theory as to why is that I have neurological damage from my acicident. When that lady t-boned my poor baby (my minivan was awesome, ok?) I misaligned the top two vertebrates in my spinal column, the ones that connect to my skull, and one of those vertebrates is pulling on the protective layer that surrounds my spinal chord, keeping my nerves safe. Ever since then, a mass of blood and cerebral spinal fluid is slowly accumulating there. And let's not forget the damage my brain has suffered the mass of fluid shacking up in there.

Other Things That are Broken in my Brain:

1. breathing = Wayyy to shallow/not enough. I have to "retrain" by brain to take big breaths because my oxygen levels are dangerously low, increasing the chances of injuring my cerebellum... because that would be VERY bad.

2. balance = No wonder I;m clumsier than ever in dance class lately! I had to stand still and close my eyes: I immediately swayed all over the place.

3. zombie walk = And the hands; I can't throw a ball for my life anymore. I had to walk towards him like a zombie, arms out, and my right arm kept lowering.

So I have to see him three times a week for adjustments/therapy, do tons of exercises at home, cleanse my blood by drinking 100oz of water a day, strict diet of only organic, and if I do as I'm told, I should be able to enjoy my summer like a normal teenager again :)

I hope that's true. I hate the idea of being a medicated freak for the rest of my life...