Being in class is pretty awesome!

I'm pretty happy this week, because I am taking a work-related class. The best part about it is that I'm only 5 minutes away from home! So, during my lunch break, I have been able to go home and take naps. It's such a wonderful feeling! I can't wait until I actually get a place to nap at work!

When you sleep well...

...it's amazing the things you can do!

Things that other people take for granted every day.

I can wear contacts. I couldn't before Xyrem, because I would be too tired to remember to take them out before falling asleep.

I can pick up around the house a little bit every day, instead of taking one whole day to clean just one room. Sleeping well and avoiding caffeine gives me a constant level of energy throughout the day, instead of fits and starts.

At work, I can focus on one task, and manage my time effectively. This got me nominated as the Tradecraft Superstar for the month of February! Just two short months ago, I was terrified that I was going to lose my job because of medical absences and falling asleep at work.

I can start paying attention to my hobbies again! I had been so exhausted just trying to make it through the day that all the hobbies I love fell to the wayside so that I could survive. I'm not just surviving anymore. I'm living.

America does not value sleep the way it should. We reward those who rob from themselves, and give their time, energy, and life to work. But this is a classic example of robbing Peter to pay Paul: the only one who loses is ourselves.

This sacrifice is not necessary! In fact, by taking care of one's self, we are able to contribute more to society than we would if we stumbled around every day in a haze of sleep deprivation fueled by caffeine binge after caffeine binge.

Next time you feel the urge to deprive yourself of sleep for something that can in fact be done later, stop yourself. You can do it tomorrow, and you will do it better, because you will be doing it with a clear mind and healthy body. And if you can't? Ask yourself if it is really worth taking from your future to pay for the present.

Make Sleep Walk In Waikiki Come True!

Please come join me for a Sleep Walk in Waikiki!

We'll meet up at 10:30 AM on March 9th (Sleepy Saturday) at the Duke Kahanamoku Statue in Waikiki, and walk down the Waikiki strip to raise sleep disorder awareness and have a nice morning walk!!

Let's support Julie Flygare, Hawaiian style!

3rd Annual National Sleep Walk, March 3, 2013

The downside of living in Hawaii is not being able to participate in events like the 3rd Annual National Sleep Walk. Perhaps someday we can have this event everywhere, similar to the MS Walk. Until then, if you are in the DC area, please participate in this wonderful event! All proceeds go to raising sleep disorder awareness.

Dreaming and Driving

So, the last few days I've been without Xyrem. It wasn't fun, but one thing sticks out in my mind in particular. My boyfriend drove the two of us to a party, and I was so exhausted I had to nap in the car for an hour before I could even muster enough energy to go inside. I spent the whole two hours there in a state of semi-delirium, happy not to be at home alone feeling sorry for myself, but not quite fully coherent.

As he drove us home, I saw a chip in the windshield. For those of you who have never driven in Hawaii, it is a no-fault state. This means that if a truck drops rocks or debris out and it hits your car, they are not liable for damages. And quite often, because of this, trucks don't take caution with these kinds of loads. I was annoyed but I figured I would fix it later.

I spent all of the next day doing laundry, napping, and watching TV. I forgot about the chipped windshield until it came time for me to go to work Tuesday morning. The chip was never there. It was a hypnagogic hallucination. People with Narcolepsy (PWN for short) experience this more than the average person. Before the Xyrem, these hypnagogic hallucinations were primarily happening at work. I wonder now if my narcolepsy is somehow getting worse.

This weekend is not going to be fun...

I was pretty excited about this weekend until it came time for me to get ready for bed last night. I went to get my regular dose of Xyrem for the evening, and, lo and behold, I don't even have enough for the whole night.

Xyrem is one of the medications that my life revolves around now, and it is the key to my being able to function normally. It allows me to get the deep sleep that I can't achieve myself, since my immune system destroyed the neurons that secrete hypocretin, which is a hormone that regulates REM sleep.

When I called the central pharmacy to get my monthly refill, I had just recently had a dosage increase. The gentleman on the phone with me told me the earliest that they could get me a shipment would be the 19th of February. Now, it's not exactly easy to tell how many days of Xyrem I have left, since it's a liquid. So I figure, hey, I will have enough until the next shipment comes. 

Wrong.

It's now 3:20 AM on a Saturday and I am wide awake. And no hope of relief until Tuesday.

Julie Flygare Tells The World: Narcolepsy Is No Joke!

Most people know what narcolepsy is because it's the punchline in so many jokes. Look at the cute little puppy on Youtube, how he falls asleep while playing! Laugh at the guy who falls asleep into his soup! It's so ridiculous and silly!

Julie Flygare has been working to change that with her newest book, Wide Awake and Dreaming. People with narcolepsy have been discriminated against for years for being lazy or stupid. The only solution to this problem is people who are like Julie - brave enough to put her life in the limelight so that a true understanding of this devastating disease can be reached.

Today, she got the first signs that her hard work is paying off.

If you haven't checked it out yet, please read her book. All of us who suffer from narcolepsy will appreciate it.

Sleep and Memory - article by NPR

I wanted to share an interesting article with you all this morning - NPR recently did a radio segment on the correlation between sleep and memory that is pretty fascinating. Check it out here:

http://www.npr.org/2013/02/08/171486710/science-of-slumber-how-sleep-affects-your-memory

Every day I realize more and more how important sleep is, and how devastating our modern life can be to our bodies. We rob ourselves of health and long life every time we choose caffeine over sleep.

What do you mean, I have a cold?

What inspired me to start this blog was waking up this morning. Not because I woke up, but because what happened immediately after: I sniffled.

No big deal, right? People catch colds every day.

Let me give you a little background as to why this was such an inspiration. Unknown to me until my diagnosis in November 2012, I have been suffering from narcolepsy with cataplexy since the age of 14. (I will be turning 30 in March 2013.) My first real symptom was collapsing to the floor for no apparent reason.

Because I had dislocated my kneecap when I collapsed, and subsequently dislodged a tiny piece of cartilage that was floating around in my joint, I had to have arthroscopic surgery to remove it. The surgeons just fixed me up and sent me home - no answer was provided as to why this happened, or even the smallest indication that they were trying to find one.

This was just the beginning of a long, drawn out fight with a poorly understood, chronically misdiagnosed illness. By the time I separated from the Navy in January 2012, I had been through 5 knee surgeries (3 of which were major tissue and bone realignments to address the dislocations), was taking extended-release morphine for the chronic pain, and was suffering from terrible insomnia and panic attacks.

Nobody could figure out what was wrong with me, and my health continued to deteriorate even as I started my new career as a Department of Defense employee. I began to have sleep attacks at my new job in May 2012. I was terrified that I would lose my brand new job that I loved, so I got a referral to Sleep Center Hawaii. Through an overnight sleep study and a multiple sleep latency test, I was finally diagnosed with narcolepsy with cataplexy.

What I didn't realize was how totally narcolepsy had affected my outlook, health, and even my weight. After the excruciating process of weaning myself off of all the pain medications I was previously prescribed, I began my regimen of Xyrem. Xyrem is the only drug approved by the FDA for the treatment of narcolepsy with cataplexy. It is also very tightly controlled, and comes with a laundry list of contraindications and explicit instructions. I was, quite frankly, scared out of my wits. But I had no other options.

With the support of Narcoleptics in Paradise (a local support group) and my wonderful boyfriend, I successfully started using Xyrem and got a new lease on life! I woke up after the first night feeling more alert and refreshed than I had in years! More importantly, I was totally pain free. Since then, I have been re-learning what it is like to function "normally".

When I started to feel tiny twinges of pain in my legs a couple days ago, along with increased sleepiness, I started to feel doubt gnawing in the back of my mind. Was the Xyrem losing effectiveness? Am I losing all these hard-won battles?

I discovered this morning that I was not losing. I was, in fact, gaining. Gaining an understanding of what it feels like for "normal people" to catch a cold.