Wednesday, February 29, 2012

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!

Wednesday, February 1, 2012

Rare Disease Day 2012

This year being a leap year, February's will have an extra day, bringing the count up from 28 days to 29 days. So with a whole extra day in the year, how will you be spending February 29th, 2012? 

To me, it will be another day to wake up, take my daily cocktail of medication, and hope that I won't feel too tired or have a bad day full of cataplexy. I'll yawn my way through a long day of school full of boring classes and try not to nap until I can leave for the day. Hopefully my teachers will be understanding but that's not likely--how can I expect them to possibly know how difficult it is for me to resist sleep? 

But it won't be just another narcaplexic day for me; it will also be the day that I will join others around the globe to raise awareness for everyone living with a rare disease, diagnosed and undiagnosed. In the United States, a rare disease is one that affects fewer than 200,000 people, and there are an estimated 30 million Americans affected by rare diseases. Struggling to find a diagnosis, information, and treatment are just a few of the things people with rare disease have to deal with, besides their medical problem itself. And unknown diseases can lead to a lot of misunderstanding when the rest of the world doesn't understand what you're suffering from either.

Rare Disease Day, a day devoted to raising awareness of these rare diseases, is taking place on February 29th, 2012, and people all over the world are going to make sure that these uncommon hidden diseases are well-spoken for. What will you do to help make some noise?