Wednesday, April 13, 2011

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...