They Just Don't Work!

One comment that is consistent in Narcolepsy circles is that the medications we get simply don't work.

Narcolepsy is not a deadly disorder, as are so many others. I've never heard of someone dying from it, though I'm sure people have died from accidents with Narcolepsy as the reason for that accident.

Instead, Narcolepsy is a quality of life issue. For those uninitiated, let me try to explain what I mean. See, everyone knows what it's like to be sleepy. Everyone in the world has been extremely tired. That's not unique to Narcolepsy by any stretch of the imagination. But there is a difference.

Imagine yourself staying up for 72 hours straight. You get sorta stupid tired after awhile, and it can be actually painful to go through. The good news for people without Narcolepsy is a short sleep, it goes away. With Narcolepsy, it never goes away. No amount of sleep fixes it. No amount of coffee can stop it. Day in and day out sleepiness invades every aspect of life so life becomes a significant struggle.

You can't make good decisions, are a bit crankier than you want, eat things in portions and quality that would make you shudder if you weren't so tired. You put things off, bargain for another minute of sleep, avoid anything that requires energy simply out of a need to survive.

This pretty well describes what I experience.

Now, the obvious medicines to use are basically stimulants. Stimulants are everywhere, and everyone is pretty familiar with what they feel like. If you've had more than a couple cups of coffee at a time, you know exactly what you're like on them. It's uncomfortable and unpleasant, maybe you might feel a bit jittery and tell yourself that you won't be drinking that much coffee anymore because you don't like how you feel.

With Narcolepsy, the stimulants are much stronger than coffee. They basically feel the same, just multiplied many times over. In addition to extreme sleepiness, now you feel absolutely jacked up on stimulants too. That gross feeling is exactly what I experience with strong stimulants. Still just as tired, but at the same time over-stimulated. No matter how many stimulants I've taken, I still go straight to sleep. Just that it's not a restful sleep and I won't awake feeling better, like I do when I sleep without stimulants.

Doctors who don't know much about Narcolepsy will look at me as though I'm a junkie looking for a fix. Or a psycho, either way. Since I'm half-fried and half-asleep nearly all the time, I can understand why that would be the perception. I must look a fright, hair dissheveled, clothes tattered, as though I just woke up (because I did), not the best way to make a first impression. Then my slurring speech is inevitably a whine about the medicines being useless and needing stronger stimulants, or refusing to take any more because of such and so. If my wife didn't go with me to these appointments, who knows what'd be. It wouldn't be good, I can guarantee that.

And I haven't touched on Cataplexy. Maybe next time. I guess I'm just tired.

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There is help out there!

It's so frustrating to hear stories of people who are struggling to survive simply because they have Narcolepsy. So many people lose their careers, lose their families, lose friends, lose so much to this disorder. It is a devastating disorder that is difficult to understand for the average person apparently. I say apparently because of the number of people who still say some of the dumbest things I've ever heard. The worst part is they say it as if they're trying to help.

Here's some real help. If you're working, and you're seeing the writing on the wall because of Narcolepsy, DON'T QUIT, no matter what anyone tells you. Do NOT leave your job no matter how hard it is because as soon as you do, you're out of options.

You have to fess up. Tell your boss that you have Narcolepsy. Tell them you need help. You may be surprised. Probably not, but it could happen. Don't switch to part-time either, as that would disqualify you for benefits in many cases. It's a trap.

Next, you need to contact HR. Tell them your situation. They have a legal responsibility to work with you to provide "reasonable" accommodations. This probably includes giving you a bit of flexibility in scheduling or allowing you the opportunity to nap at times during the day.

In reality, that probably won't be enough, and you'll begin to feel the heat from co-workers and your boss. But don't cave. It's important that you get things in order before anything drastic is done. You need a PSG/MSLT that proves without a doubt that you have Narcolepsy. IH isn't good enough. It's important to get this done WHILE YOU STILL HAVE INSURANCE!!!

Get your doctor (who you've hopefully already built a relationship with) to put you on short term disability. This is a good time to talk with your doctor about disability. If your doctor doesn't see things the way you want them to, switch doctors immediately. Don't wait, hoping that they'll come around, cause they won't. Just find a sleep specialist, or ask someone who has Narcolepsy and lives in your area. Or, more realistically, find online support groups like TAS. People with Narcolepsy are a great source of information as many have been through this before you.

At the same time, talk to a disability attorney in your area. Not someone new, someone who's been around the block a few times. An hour of consultation can save you a whole LOT of headache. Can't stress this enough.

There's lots of hoops to jump through for SSDI. Maybe I'll write about that whole fiasco at a later date.

So Close!

I'm not a rich man. In fact, quite the opposite. I'm cash-poor in a beautiful house in Idaho. We're getting by on a beans and rice diet, just trying to make ends meet. Sometimes we do it, sometimes not quite, but we do our best. This is always a difficult time of the year for us because we're just beginning to recover from Christmas and birthdays.

Well, I was just recently approved for Social Security Disability Insurance. I've been on private disability insurance since 2005 and now it's time to pay back the disability insurance company. I've known this day was coming for the past 4 years, so it should be easy, right?

Wrong! It's not so easy. We got a large amount of money from SSI (which I admit not knowing what that's about) in 4 of my 5 children's names, as well as my own. Not knowing what it was for, of course, I cashed the checks and put it into my checking account. Then, I started planning. Pay off the credit card, pay off the car, purchase new flooring we're so desperately in need of, blah blah blah.

Then, just as I was getting ready to relax, my wife asks me if I have talked to my lawyer about it yet. Well, of course not I say, and try to dismiss it out of hand. But, the damage was done. The more I thought about it, the more I realized that this was not my money.

So, I called my lawyer, and sure enough, it's not mine. It would have been great to be able to pay off something, to lower my monthly debt load, but it was not meant to be. We'll have to do it the hard way.

Wow, just when I thought we were going to be on easy street, here we are again. It would have been better to never have seen that money.

Oh well, life is still good. We'll get through this just like we've always done. One day at a time.

The Wonders of Narcolepsy

I've been laying here awake for the past 2 hours thinking. It occurs to me how special it is to have Narcolepsy. Really, if you don't have it you are missing out. Big Time... Can't even imagine what life would be like without it. All that going to work stuff, traffic, rat racing through life. Nope, not for me, I'll tell you. You know, I did all that for oh... what was it... 19 years or something? I still find myself missing it for some odd reason. When I do, I remind myself of all the benefits Narcolepsy has provided. How many of you have been asked to donate your brain to science? Well, I have and it's not as re-assuring as you might imagine it to be. Imagine my brain going to science though! That's special. What other benefits does Narcolepsy provide? Read on, read on...

First, there's the wiring. Can't stay awake when needed, can't sleep when wanted. Makes social situations a real wonder. As in, I wonder if I'm going to stay awake through this. And there's some type of short in there somewhere around strong emotion and exercise. But, that's ok. Everyone has issues. I'm especially good to have around in bear country. If I'm startled, I might just collapse and give everyone else time to run away.

Second, you learn all sorts of new words, like amphetamine and Ritalin, and even learn to use them in sentences like, "Hey doc, why doesn't this Ritalin work anymore? Can't I try something stronger, like dextroamphetamine or Xyrem or both?". It's pretty fun learning new words. Can you say Gammahydroxybutalate? Wow, my tongue got all numb there for a second... so fun...

Third, it's invisible. Can't tell you how many people have suggested that I just cut out carbohydrates, go to bed earlier, see a therapist, and even stop eating red meat. Some people have called me lazy and un-disciplined. But it's not that easy. Now, if I walked with a limp or had an eyepatch (hmm not a bad idea actually... Argh! I've always wanted to be a pirate) or sat in a wheelchair, maybe then it'd be clear that I'm dealing with a bona fide disability. Let me say this, it doesn't matter what I eat, how much I sleep, who I speak with, or what I've killed for dinner, Narcolepsy is not going away. I'm dealing with it, please do the same.

Fourth, it's awkward and hey, that's just plain cool. I don't think there's an etiquette book written on Narcolepsy yet. When I'm tired, which is all the time, I just get it out on the table right away because I don't want any confusion about why I'm sleeping. In church, for example, it is impossible for me to sit through a service. Somehow the monotonous tones emanating from any speaker quickly turn into harp music and I peacefully dream about lying down on the floor and snoozing. So, I get up because it's better for me to be standing when I fall asleep apparently. Some people must not be able to sleep standing up, but I have no such problem I assure you. When I say something about sleeping standing up, people inevitably stare in awkward silence and then there you are. My circus-like ability to sleep in any position is just plain cool I tell you. I'm practically a licensed professional sleeper, world class. It doesn't get much better than this. I'm like the Michael Phelps of sleep... just 9 gold medals away from world domination... What's that, did you say "In your dreams"? Yep, exactly

Fifth, doctors treat you with contempt. This might seem like whining, but it's not. See, the only treatment available today for the excessive sleepiness I have day in and day out is very powerful drugs. First is Xyrem, which is actually code for GHB, which gained notoriety as a date-rape drug. It's illegal in the US except by prescription. Second is stimulants which are also controlled. Doctors naturally think that I'm a druggie if I speak about needing stronger stimulants or ask if I can get Xyrem. It all makes sense now right? It doesn't help that I NEED the drugs to function because isn't that the definition of addiction?

Sixth, and last only because I can't think of anything else right this second, and it is 3AM for the love of corn!, I can do real circus-type tricks. For example, I went into the doctor the other day. It was the VA, and they love me there. I'm quite popular, it's true. Not every day that they see a person with Narcolepsy grace their door, and they are better for it I'm sure. Anyway, the nurse lady took my BP, which was 149/97. That's high for me, or at least I think it is. Anyway, she told me to relax and she'd take it again in a few minutes.

Well, I went to sleep right away and remember dreaming about Lamas breathing techniques my wife and I practiced with all 5 kids. Didn't do them mind you, just dreamed about them. When she took the BP again about 3 minutes later, 128/87. 20 point drop thank you very much!

She didn't believe me that I'd fallen asleep, but then again, she couldn't explain the drop in BP either. She doesn't have Narcolepsy so it doesn't make sense. Sleep is like a light-switch for me. On, I'm awake, off, I'm asleep. It's that simple. I feel sorry for those who have to wait so long to go to sleep.

Now, who feels sorry for whom? Hmm?

Why February is the most dangerous month in Idaho

After a few months cooped up inside with a couple of feet of snow everywhere, one tends to stop thinking completely rationally. Completely normal I think...

The reason I say that? Oh... it's because of Wilbur of course. See, Wilbur, a rogue Moose that happens by every once in awhile, is a typical moose. I am not, apparently, a typical person. When a typical Moose meets up with an a-typical person, such as myself, well... things happen that really should not happen.

Maybe I'm over-thinking it. I'm sure everyone has stories from their past that might come back to haunt them on occasion. In ten years, this will just be one of those funny stories that help pass the time during something dreadfully important, yet incredibly boring. I can almost see the giggling faces now... Ah... laughter...

Ok, on with it. Here's the thing. When you first see a moose up close, it's a startling thing really. I mean, what a sight! Not many people see that sight, I must say. It's pretty darn special. You might already feel a connection with that moose, and well, maybe that explains why I acted the fool.

See, Wilbur is a normal moose. He was probably thinking, "I'll kill that thing if it does ANYTHING!!!!". Meanwhile, on planet me, I'm hearing love music and dancing on the shore of some beautiful beach, holding out an apple for him to munch on.

What happened next? Well, you guessed it. He ate it. And the next one. In fact, he ate all the apples, save 2. Then, he just stood there. I can tell you, I felt a little small just about that time. See, all that's between me and this huge fella is a miniscule layer of glass on the sliding glass door. And just about then is when I realized... Hey, this glass is pretty thin. Why, I'd bet money he could just walk right through it and kill me, lickety split. Then I had images of my life, all the best and worst moments, flash before me like a gigantic Rolodex. It was oddly not relaxing.

Meanwhile, Wilbur stared at me, and I gulped. My head was quite close to him already, my upper torso hanging out the door. Just when it seemed that this may go horribly wrong...

BARK BARK BARK BARK BARK comes Sly Cooper, the fearless but tiny pug/Jack Russell mix. He had been locked up so just this sort of thing didn't happen. Well, let me tell you, it certainly did. And I was Front Row watching the entire fiasco unfurl before my eyes.

It's weird how things slow way down when you're in a crisis. I remember hearing Sly bark, and realizing that he'd run past me and was right next to Wilbur. My eyes must have been the size of saucers by this time, because I was intensely focused on Wilbur. I figured Sly was a goner, and had already picked out a place to bury him, the poor bugger. I'd started working on his tombstone. Something like, "Here lies Sly, Killed by a rogue moose, cut down in his prime. He will be missed..."

Just then, a most curious thing happened. Wilbur, who up until now had a relatively benign look in his eyes, apparently quite satiated by the 5 pound sack of apples I'd lovingly handed one by one to him, took on an entirely different demeanor.

I'm assuming this is normal for a moose, since I'm no expert. Wilbur put his head down, his massive ears back, and the hair on his neck stood up. Then, he growled, well, more like a grumble really. Never before have I heard this sound, but it scared me.

Apparently, it was intended to scare Sly too, because it did. Sly went from hellion dog filled with fury to a slinking whimper in an instant. I've never seen anything like it. Sly slunk to the corner, completely silent, and then ran in a big circle around Wilbur, only to dash in the door behind me.

I thought, "Great, now he's going to kill me instead. Oh well, at least I hand fed a moose before I died." and mentally prepared for the end.

Somewhere along this process, it occurred to me that Wilbur wasn't killing me. Instead, he had regained that solemn expression of satiation, and maybe he was just wondering if I were going to give him those last two apples. I wasn't.

A long uncomfortable silence ensued.

Apparently Moose are much more patient than I am, because I lost interest and went upstairs. All this excitement made me take a pre-nap nap. And I dreamed about Moose, and it was good.