Sleeping Awake: Living with Narcolepsy

DEAD?

2009-02-04T20:44:00.000-08:00

WOW, I read a really interesting article about a woman who was thought to be dead 3 times...because of cataplexy? Read it!

http://archive.theargus.co.uk/2000/10/18/187718.html

Doc appt.

2009-01-30T12:48:00.000-08:00

Had a doctor's appointment today-- I love my neurologist here! The one I had in Chicago was a total idiot. I always felt like she knew nothing about narcolepsy (she'd always ask ME questions)-- this doc is great because I know he knows what he's doing. Also, his nurse practitioner (the one I usually see) is just as good as he is. Hallelujah. So we increased my dose a little (xyrem), so we'll see how that works out.
My neurologist office is like 20 mins away-- it's worth it though. Plus the drive back is the most breathtaking view of the ocean. -^_^- Yep, that's secretly why I go.

<3- Eden

2009-01-29T12:38:00.000-08:00

Well, long time no post on this blog. I just opened a general blog (just about life) because I found myself wanting to stray off the topic of narcolepsy here.

Well, not taking school this semester, but I think I'll take some online classes. I've been trying to find a job like mad-- I think I may finally have a lead because of networking. I'm really unsure whether or not to mention the sleep disorder, (for a job) it's not like they can turn me down because of it (but they might try).

I'm on Xyrem now, and it actually seems to be helping a little. I was really scared to try it for a long time, too bad I didn't start it sooner. I still have Providgil to take on "as needed" basis-- I only really use it for class, or if I have to drive far.

Mostly, my biggest issue with narcolepsy is that it's really hard to lose weight. My metabolism is like non-existent, and my body takes all it's energy to keep me going (it never thinks about burning fat). So, because of this I've decided to go no-carb/no-sugar untill I'm at my normal weight again. I'm also running every other day, which (needless to say) wipes me out.

Well that's all for now.

<3- Eden

Sleepy Student

2008-10-01T14:49:00.000-07:00

The question everyone asks: what about school?!

I wish it wasn't so, but school is #1 on the list of places that I struggle to stay awake. It's sedated (I'm sitting down the entire class period usually) & static for the most part. Classes that I tend to have less problems with are more interactive. I can't avoid lecture classes if I want to get my degree (& I do), so I do my best.

I'm actually pretty happy that I even made it to college. There for awhile in High School, I really thought I wasn't going to graduate. High School was the worst experiance of my life-- I'm a smart girl, but I could never stay awake long enough to prove it. What's worse is that it took me awhile to accept any help at all.

"I DO IT BY MYSELF" was one of my favorite phrases as a tyke.

Anyway, I just went to class this morning & sure enough, popped in & out of sleep all throughout the lecture. It's so hard to get complete notes, & impossible to not to do extra work outside class to make up for it.

Le Sigh. Such is Life.

<3- Eden

Exausted but Strong

2008-09-30T23:10:00.000-07:00

So besides falling asleep, Narcolepsy wears me out. Literally. Exhaustion, fatigue, lethargy-- all of the above. I've been dancing since I was a very little girl (jazz, ballet, tap, modern, hip-hop) so energy has always been pretty key in my life. When I was first diagnosed in October of 2003, I finally understood why my energy had been dragging. Now that it's 2008, I've been dealing with my exhaustion for five years & I know how to deal with it a little better. Sometimes I think that I can actually go further & longer than most people because I'm used to being worn out. The hardest part though, is that no one understands how exhausted I am-- people think I'm being dramatic & wimpy, when really I'm wearing myself completely to the bone. What people don't get is that every day my energy is like...well, imagine you hadn't slept for a week. That's how much energy I have on a daily basis.

Really though, negativity aside, I'm convinced that everything in life happens for a reason. I have learned to be strong & endure because of this. Sometimes I feel like I just don't have enough energy to make it through the day. In the end though, once I make it, I realize how much stronger I am because of the struggle.

<3- Eden

""""I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.
-Philippians 4:12-13