The why or the how

Is there a way to definitively figure out WHY we have narcolepsy?  Like how we got it?  I’m genuinely curious if there’s a way to find out.  I don’t know why it matters so much to me, but it does.

I think I’ve always sort of leaned towards it having been from receiving the H1N1 flu vaccine in 2009, when I was pregnant with L.  He was born in March of 2010, and by September I had changed jobs and was only working 4 days a week.

I remember texting my best friend one day from work and telling her that I was unimaginably exhausted.  I remember saying that I honestly thought maybe I should go home because I truly felt THAT BAD.  Looking back, I remember being startled at how exhausted I was.  It wasn’t like a grumpy, angry kind of exhausted – it was more like a vision-sort-of-fading around the edges, body numb and fuzzy/warm, unable to focus on anything kind of exhaustion.

I have one other prior memory that stands out.  At the place I worked when I was pregnant with L, I was an attendee in a large conference room meeting.  The VP of Human Resources (from corporate headquarters) was speaking to our HR team of 50-or-so employees, and I realized that I was REALLY struggling to stay awake.  I started pinching the skin on my thighs as hard as I could, hoping that the sensation would keep me awake.  I did the same thing with the skin between my thumb and forefinger.  I would take a drink of my Mountain Dew every few seconds just because the movement, ANY movement, kept the sleep at bay for another moment or two.  Just as I was about to do the unthinkable – stand up and excuse myself from the meeting – the meeting finally concluded.  I was elated it was over but horrified and embarrassed that I had been struggling to stay awake in the first place.  Like seriously, WHAT was wrong with me?

Ha! Little did I know, right?!

What I can’t tell you for sure, though, is whether that meeting took place before or after I was pregnant with L.  I worked at that company for nine years – and for only two months after my maternity leave ended.  So it’s possible that it occurred when I was pregnant or after I returned from leave, but it seems more likely that it was sometime before.

But everything else leading up to my diagnosis was definitely after.

And yet – when I was with my best friend from high school and college this weekend, I asked her if I REALLY slept an unusual amount back then.  She had no hesitation in telling me that I absolutely did.  I didn’t do anything to lead people to think I was sick – I just slept A LOT.  It was more like my personal little quirkiness – I liked to nap.  If something was going on between the hours of noon and 4 pm, it pretty much wasn’t going to include me.  Because I was napping.

 

YOU GUYS.  I have to tell you …. I started this post a week and 1/2 ago.  Today I logged back in and was re-reading the draft, and as I read the part about the HR meeting, I suddenly remembered ANOTHER time… ten years EARLIER, when I was pregnant with E… when I was fighting a bunch of sleep attacks.

I CANNOT BELIEVE THAT IT TOOK ME NINETEEN YEARS TO CONNECT THE DOTS.

I completely and totally forgot, UNTIL JUST NOW, another blatantly obvious example of a sleep attack.  I was in my last semester of college and interning for an adoption agency, and we were doing a home study at a potential adoptive family’s home.  I remember sitting in the family’s living room, and realizing with horror that I was falling asleep.  The adoptive mom was concerned for me and asked me if I wanted some juice.

I remember going into the bathroom and splashing water on my face, AND DOING JUMPING JACKS.  Jumping jacks!! I remember being horrified at how I was acting – I was so excited to be there, interviewing a family, hearing their stories and their dreams for their family-to-be.  I was newly pregnant with my first baby, and had no idea what pregnancy was like.  I was reading What To Expect When You’re Expecting and it said being tired was normal… wow.

I feel like this entire post is now a moot point.  Except now I have to post it!  I literally just realized TODAY that I definitively struggled with narcolepsy all of my adult life.

If it wasn’t for this blog, and me writing to you, I don’t know if I would have ever have made the connection.  I don’t even know what it was that caused that memory to pop up, except that I was trying to explain what I felt like in the HR meeting when I was falling asleep…

So thank you for being here to experience that with me.  It has always bugged me, trying to figure out how or why me?  How or why did I have narcolepsy?  Now I can confidently, and with absolute certainty, set that down.  It wasn’t CAUSED by something… it is just who I am.   What a nice thing to be at peace with.

Being beautiful

I want to start by telling you who I am.  Both the child I was and the woman I grew into. The things I loved most about myself, the things that defined me, and the things that I considered beautiful and precious about myself.

I was born and raised in Iowa, in the same community that generations of both sides of my family were raised in as well.  I grew up as the oldest of two very loved and treasured daughters in a cute little house in a safe and quiet corner of our town.

I am genuinely blessed with a sunny and happy disposition.  I laugh easily and frequently, and I put a lot of energy into loving the people around me.  I have been writing stories since I was in first grade, am a voracious reader and I love to do artsy/crafty things like knitting, painting, and hand-quilting.  When I grew up, I wanted to write books from my pretty yellow-and-white home office, looking out onto the lake I was going to live on.

I married my best friend.  Literally.  I met Joe the summer before our freshman year of high school.  We were “just” best friends for about a year, dated for the next two, and then went our separate ways.  We reconnected at 19, and married at 23.  A million years later, I would still say “I do”.

I am the mother of three precious and beautiful boys, and there is absolutely nothing on earth that matters more to me than ensuring that they know… undeniably and irrevocably, with every ounce of ME that exists… how much I love them. 

If I had the ability to freeze time at any given second, I would.  Each second of being a mother is the best part of my life.

I have said to my husband on more than one occasion, that if I died tomorrow, I would know that I had been gifted with the most precious and beautiful life.  I genuinely believe that I was blessed, and no matter what – and God knows there has been a lot of WHAT – I have literally been blessed with every good thing this life has to offer.  I have truly been blessed with everything that really matters in life.

I love that so much.  I love knowing that deep, deep down, one undeniable truth that no one can ever take away from me, is that I myself know I am lucky.  I am blessed. My life has been beautiful.

*     *     *     *     *

So I try to go back to at least then, who I was when that was my day-to-day reality, because if nothing else, it inspires me and shows me that nothing is impossible.  I will find my way back to that genuine, beautiful version of me.

The joyful, blessed, energized, confident and effortlessly happy me. 

The awake me!

The reason I want to tell the story over is because I went from there…  snuggled up in Joe’s arms, the house quiet and peaceful, three sleeping children safe and happy in their beds, and both of us thanking our lucky stars that we had it all…

To realizing that pieces and parts of my very existence had been slowly, but undeniably… disappearing.  Things that I LOVED about myself, found beautiful in myself, or knew with absolute certainty to be true about who I am inside, piece by precious piece…

 

had drifted off to sleep.

 

Starting over

I’ve decided to try something new.  I went through all of my old posts — every single one of them — and I made them all private.

I only left up one – the one about my sleep study – and tried as quickly as possible to close all of the other ones, all the way up until I started on Xyrem.  I tried to not read them as I went, and sometimes I’d catch a few of the sentences and feel the pain behind the words all over again.  I’m glad they’re all down now.  I don’t want to delete them, because maybe someday I’ll want to read through them again.  But not now.  Maybe not ever.

I have decided it’s time to start my story over.  There is just such an incredible amount of understanding that I have now, that I didn’t have then – back when I was “learning to live with narcolepsy”.  That was my by-line, by the way.  Learning to live with narcolepsy.  I wasn’t learning ANYTHING, if I’m being honest with myself.  I had NO IDEA what I was up against until I tried Xyrem.

But the real thing is, I think it’s time to tell the whole story.  I wonder how much might have been different, if I had really known what narcolepsy was doing to me.  Or maybe nothing at all would have been different.  But either way, here’s what I can say with confidence – there is just not enough out there about us, and what we are experiencing.  I’ve pored over blogs, trying to find people’s stories.  There are a handful of us, willing to share our stories, but not nearly as much as I had hoped to find.

My neurologist told me once that she would love to read my book, if I ever wrote one, about my experience with narcolepsy and what transpired when I took Xyrem.  I’ve decided to give it a shot.

So here we go.  I promise to be honest, and I promise to not paint anything prettier than it was.  I am going to do everything I can to explain it, as fully as I can.  On the days that the words come easy, that is.  Xo.

Me: 1, Narcolepsy: Still Zero

As of my dose last night, I have officially been on Xyrem for two months.  GOD, how my life has changed in those last two months.  Seriously.

First the positives – and these are HUGE!!!

1. Me.  I feel like I am finally myself again.  In a million ways.  I literally cringe when I think about who I was just a few VERY SHORT months ago.  I can tell you, with 99.9% confidence that I was headed for a divorce.  Xyrem gave me back MYSELF, and with that precious gift, gave my husband back his wife and my children back their mom.  It gave back the daughter, friend, employee, and sister that had genuinely ceased to exist.
2. I am ROCKING IT at work.  ‘Nuff said.
3. I am HAPPY.  It makes me incredibly happy that I’m happy! LOL!  But really… I have laughed more in the last two months than the last two years.  I’m not kidding when I say that.  In middle school, I had a friend whose mom told her she didn’t like me.  She didn’t like me, she told her daughter, because I was so happy all the time – and it made her afraid I was on drugs.  (SERIOUSLY, Gayla?!)  I have always, always been a happy creature.  Happy is a character trait that is key to my own view of myself.   When Marianna comes to visit me, we laugh a lot.  About two years ago I began to realize that I actually laugh differently – lighter, younger, more giggly-er, when I am with her.  This lasts for about two days after she leaves and then it disappears.

Marianna has been my best friend since we were fifteen years old.  She has been through every major life event since we were 15, and you can’t love someone like I love her without a LOT of laughter and tears between the two of us.  About two years ago, I began to realize that I laugh differently when Marianna comes to visit me.  My laughter is easier, lighter and more gigglier (is that even a word?).  About two days after Marianna goes home, the laugh disappears again.  It’s like only she is able to elicit that easy, truly “me” laugh.

Since starting Xyrem, I have began to laugh my only-with-Marianna laugh, and it feels AMAZING.  It’s a beautiful sound, to even my own ears… because it’s so obviously genuine and easy and is sprinkled generously throughout my life ALL THE TIME now.

4.  I have so much that I want to do!  There are so many things that I love that I just didn’t love anymore… and I couldn’t tell you why.  Why didn’t I read any more?  I read every single night for about 35 years, and then I just stopped.  Why didn’t I write any more?  I have been starting the next best-selling novel at multiple times throughout the year since 4th grade… and I had absolutely no desire to write whatsoever.

I didn’t cook, I didn’t try new recipes, I didn’t try to learn new things, I didn’t get excited about anything… ever.  I, the family member who was KNOWN for reminding everyone else of everybody’s birthdays, began to forget them.  I was the one who put together the annual weekend for all of the women in our family… and I just stopped.  And I was sad about it, but also ok with it… because I just didn’t have it in me anymore.

While my body may have been existing (however poorly that may have been), I think from the outside, my soul probably seemed to be dying to everyone else.  Which is why Joe literally was looking at me like I’d grown two heads when overnight, I was back.  I will never forget the way he grabbed me and held me and told me how much he’d MISSED me.  And how he apologized to me for all of the thoughts he’d had about me, all the conclusions he’d drawn, and how he had NO IDEA that all of this time, I was simply sleep-deprived beyond comprehension.

I harbor no anger towards him at all, and if anything, I love him even more because IN SPITE OF EVERYTHING, he didn’t give up.  He was STILL STANDING NEXT TO ME.  Even though we were on the edge of that never-go-back line, even though he “had no idea who I was anymore”, even thought I told him to his face that I couldn’t change if I wanted to because I had no idea how but more, I didn’t really want to… EVEN WITH ALL OF THAT, he didn’t give up.  That kind of love is tremendous.  I am so, so blessed.

Which leads me to the not-so-positive stuff that I’m working through.  Or trying to, anyway.

1. I can safely say that I had NO FREAKING IDEA how horrific narcolepsy really is.  How naive I was – and uneducated and BLIND.  This beastly little disease was robbing me of everything I hold to be beautiful and good in this world, and was doing it right before my eyes but had robbed me of my sight FIRST.  Meaning that I HAD NO IDEA of all that I had lost, until Xyrem.  Xyrem was like literally restoring my sight to me.  And HOLY HELL, the CARNAGE I opened my eyes to!

So what do we DO about this?  I can’t “un-know” what I now know (and I wouldn’t want to, because to do that would be to go back to the naive and clearly failing Krissy 2.O)… but now that I do know, I am scared shitless.

Are you guys scared?  I am truly terrified.  I haven’t been able to talk about this much with anyone yet, because Joe is so damn scared that I will give up on Xyrem that he hears my fears as a threat to the stability he just finally earned back.

The other night, he came home from work an hour early… which means that the house was a slight disaster and he found me up in our bathroom with makeup products spread out all over the counter trying on some new makeup looks.  He said “So… looks like you didn’t get much done today.”  To which I responded “I didn’t!  Which was my goal!”

That sounds bad.  LOL.  I’m laughing at myself even as I type it.  But the backstory is that I was trying our a new recipe (Krissy: 1, Narcolepsy: 0) on Friday night. I was attempting to pan sear a steak in butter sauce.  I burned THE CRAP out of my hand with a huge glob of SMOKING hot butter.  So that night was ruined, and Saturday was spent in Urgent Care and waiting at the pharmacy for meds and getting gauze pads, tape, wraps, etc.  Basically, Friday night and Saturday were ruined with one SUPER HOT sweep of butter.

So Sunday rolls around and my plans are to relax.  I want to keep my hand wrapped up well so don’t have to see or feel it, and I don’t have anywhere I need to go… so I planned to get lots of rest and watch Hulu and YouTube… basically my goal was to do nothing for the last few hours left of my weekend.

Back to Joe getting home and my goal of doing nothing… he then comes into the bathroom and asks me if I can get a quote for our car insurance… and have I emailed about B’s next appointment… and I turned to him and was like “Dude! I already told you I’d do all of that tomorrow… but I’m not doing it today, so STOP.”

I got super cranky, super fast.  But then I had to throw up a pause to myself … because what if I’m slipping??

“Have I fallen off the wagon and I just don’t know?”

“Fallen off the wagon?”  Joe repeated my question, looking at me kind of blankly.

“Meaning, am I bad again and I don’t know it??”  As I was saying this to him, I could hear the desperation starting to creep into my voice.  I had to explain to him that I have to use him as my gauge for how I’m doing, and I have to trust 100% that he’s RIGHT… because now that this has happened, I can’t trust myself anymore… I can’t trust that I know, for sure, if I’m STILL doing well… I can’t trust that to ME, I might feel great, but to the rest of the world, I might very well be going right back to where I was.

If I couldn’t SEE it before… and I COULD. NOT. SEE. IT. …  what would make me think I could now?  The ALIVE version of me was gone and I had no idea.  ***I*** was disappearing before everyone’s eyes and I did not KNOW, because I couldn’t even REMEMBER WHAT IT WAS LIKE to be normal….   So I have no way to really know anymore.

I told Joe that I felt like I had been given a diagnosis of dementia.  Joe… Joe can divorce me if it gets too bad… Joe CAN choose to go a different route to find happiness, if Krissy 2.0 tries to take the wheel again.  (I’m going to have to stop joking about Krissy 2.0, because it makes me sound like I have a split personality.  LOL.  But I really do feel like that was an ugly and miserable version of myself, and I FREAKING LOVE myself again!).

So he has an out.  But I don’t have an out.  There is no “out” to narcolepsy.  So I could very well start declining again, and be thinking the whole time that I was totally ok… was just not interested in that anymore.. or that I was just tired this weekend and didn’t want to do anything … and the whole big wheel could be already in motion and I would not know.  

So – I told him – “you have to be sure you’re being honest and respectful of ME.  I CAN have a weekend where I do nothing, and I want you to say “good for you, babe.”  I want you to support me and respect my decisions about how I’m feeling and if I need more rest…. but I also NEED you to TELL ME if I start ‘falling off the wagon’ … because I have to TRUST that you are right.”

I don’t know how I can have experienced the miracle that I have, without my whole world getting ROCKED.  You can’t have this ENORMOUS and WONDERFUL GIFT come without a price.

But HOLY SHIT, PEEPS, I AM REALLY DAMN SCARED.

Krissy: 1, Narcolepsy: still zero.  I’m really damn scared, but I’m really damn determined, too.  Narcolepsy doesn’t get to win this.

 

 

 

 

My brain on drugs… with a side order of bacon.

When I was in high school, I had a poster on my wall that read “This is your brain” next to a picture of an egg.  Then it had a picture of a cracked egg with the caption “This is your brain on drugs”.  The third line, which my 15-year-old self thought was hilarious, was a picture of some scrambled eggs and two slices of bacon. It read “This is your brain on drugs, with a side order of bacon.”

20-ish years later, I find that same thought equally hilarious, but in a totally different way.  Xyrem now serves up my brain on drugs (and a particularly amazing one at that!), with a side order of bacon… every. single. day.

One downfall to Xyrem is that you can’t eat or drink anything for two hours before you take the first dose.  Apparently I have a serious addiction to snacking, because for some reason not being able to eat after 8 pm every day means that I wake up RIDICULOUSLY ready to eat everything in sight.  It’s totally psychosomatic.  I am in absolutely NO danger of starving just because I can’t eat for the two hours before bed, regardless of what my brain is telling me.  So seriously… I need to slow my roll in the mornings. (Although my cafeteria at work makes a seriously mean omelet.  For $2.99.  So maaaybe I can just skip lunch?… hahahah).

I have recently had a very sweet reader comment on my post “Narcolepsy makes me stupid”.  It got me thinking about how incredibly true that statement was – and at the time that I wrote the post, I had literally NO comprehension of just how much “stupider” I was going to get.  What I have realized about how much of ME was lost over the last few years BLOWS MY NOW-AWAKE-MIND.

My latest realization is that I’m kind of embarrassed at work.  Embarrassed because I now can truly see what a hot mess I was.  It’s a wonder that they kept me at all, because this company is an A+++++ in the world of awesome companies to work for, and it’s no secret that they only hire the best of the best.  If you’re not the best of the best, this isn’t the place for you, and you’ll be managed out one way or another because there’s just no tolerance for people who aren’t willing to give it 110%.  Maybe that’s what kept me in… somehow I’ve managed to eek out just enough to make it really obvious that I was giving 110%… but still.

That 110% is like 25% of what I am accomplishing at the moment.  People are giving me odd looks because suddenly I’m on time every day… I have makeup on that MATCHES MY OUTFIT, and my hair is styled… I have earrings AND a necklace on.

And that’s not all of it.

I genuinely can THINK faster.  I am able to solve complex issues ridiculously easier.  I am able to approach situations with a more rounded thought-process and think “outside the box”.  There is a project that I’ve been trying to make happen for like a year now.  All of a sudden I have plenty of time to do it, and not only that, it’s not HARD at all.  Two months ago I would have told you that it was nearly impossible to accomplish — and that’s why I hadn’t made much progress with it.

This bothers me.

It bothers me that I was truly presenting to the world some sort of barely-hanging-on, clearly pushed-beyond-her-limits, woman who just baffles her friends and loved ones by becoming more unrecognizable with each passing month.  2015, which is the year I was diagnosed, was a shitshow.  2016 was even worse.  2017 was absolutely a nail-in-the-coffin kind of disaster.

A therapist once told me that I was the huge ship keeping our family afloat (we don’t really need to share that with Joe).  Lol.  The therapist said that if I went down, the whole ship would go down, so I really needed to take care of me.  In hindsight, HOLY F-ING SHIT WAS HE RIGHT!!!!!!!!  I was slowly going down.. day by day taking on more water… and I think I finally was just underwater altogether… and then everyone began to sink.  Xyrem was like someone pulled the plug to release the safety raft and it shot us straight up out of the depths and to safety.  It’s like we’re now sitting, soaking wet and a little winded, on the beach, staring out at the wreckage and wondering how in the holy hell we survived THAT.  Whew.  Give me just a sec, peeps, to whip up a coconut bra and put a flower in my hair.  We’ve got this.

But in all seriousness… it makes me wonder if doctors truly understand how much narcolepsy affects our thinking, comprehension, memory and thought processes.  For me, Xyrem proved to be a huge agent of change – dissolving overnight the years of grime, crud and fogginess that had (unbeknownst to me) clouded my view of everything.  I wonder if someone looking at my brain on an MRI or a sleep test would see electrical charges going on that pre-Xyrem were simply not firing.

I asked the nurse from Jazz how it works… like what exactly does Xyrem DO in the brain to create this response.  She said they truly don’t know exactly why it works.  It’s fascinating to me, to think that a simple medication can unlock that much of someone’s brain.  Supposedly experts say that humans only use a very small portion of the brain.  Imagine if there were ways of unlocking other parts of the brain that we don’t use… that we don’t even know about or can’t even imagine.

Because I for sure as hell never imagined this.  I never imagined how much I was missing either.

I also have congenital hearing loss.  I was born with this, and when I was in my early 30’s I finally had to give up and get hearing aids.  That was horrible.  But as time goes on, I have lost the ability to hear certain sounds.  I will hear a song from high school that I know up and down, from the first note to the last, and I will totally and completely not recognize it anymore, because it doesn’t sound the same.  It’s kind of like trying  to imagine a song where the C and D notes simply don’t exist.  The drum is still there with the same beat, the vocals are still singing the same words, but the overall song that you KNOW it is supposed to sound like is not the same song I hear now.

It’s terrifying.  I’m terrified that some day I will not be able to hear my children’s voices, and worse, I won’t even be able to have the MEMORY of them, because the sound will cease to exist for me.  Narcolepsy stole my perception of LIFE in that same way… pieces of my former life simply fell away and I ceased to remember them at all. It made my view of the world, my own personal sparkle and wit and awareness of certain things… completely different from what it is now.  Which is the old-and-improved.. but original… me.

Also, for the record, I am 1000% NOT A MEDICAL PROFESSIONAL.  Please do not think that ANY of my ramblings have any actual merit from a scientific point of view.  I am purely just sharing my truth of how narcolepsy has impacted me.  And how Xyrem has completely and most assuredly changed my life – for the better.

I’ve been reading some other blogs and find that sometimes, in the future, people who previously LOVED Xyrem grow to not be able to take it.  They lose too much weight, or have an unusual reaction or side effect.

Please, please, please God.  Please don’t let this happen to me until they find a way to ensure that I will get to “keep me”, the real and authentic AWAKE me… for the rest of my life.

Xoxo.

Xyrem – The Morning After

The first week was hell.  I couldn’t sleep, I threw up, I had horrible headaches, jaw-pain, neck-pain, and the two-hour wait between eating/drinking and actually taking the Xyrem seemed to last forever… and worst of all, I knew that drinking that nasty, clear little prescription bottle of water would bring on a roller coaster ride with it’s own unique little hell each night.  Every single night seemed different from the last.

Except for one steady, which was that I had muscle jerks or spasms, or SOMETHING, all the time.  My entire body was tense and jumpy.  The only thing I can liken it to is what I imagine restless leg syndrome is like, except times 100.  (Hence why I fell out of bed, hahaha!).  Joe and I were determined, though, and so we kept pressing on.

It wasn’t until I realized that I have to actually turn off all stimuli –  TV, phone, and lights, in particular, that I finally began to get some sleep.  I think it’s completely possible to barrel my way through and past the Xyrem… but I don’t know why I’d want to.  I’m nauseous, I can’t see straight, and I’m super agitated!  I think I genuinely was just so damn scared of the medicine that it took awhile to trust that I really was going to be ok.  So I finally began to sleep… but where the real miracle occurred was when I woke up in the morning.

I opened my eyes, and realized that my alarm wasn’t due to go off for another five or ten minutes.  I truly can’t remember the last time that that happened.  And then I rolled over and sat up, and looked down at my sock-clad feet (because they get really cold) and I realized that… I could actually get out of bed.

That sentence seems so ridiculous… even to me.  But it was true.  I could get out of bed and it was… easy.  I told Joe that I felt like a 17-year-old.  Honestly.  I probably really WAS seventeen the last time that getting out of bed was this easy.   I actually felt lighter.  Like a giant heavy water-logged carpet had been pulled off of me.

In the coming days, more and more things would become apparent to me.  Each time they did, it was both a personal celebration, and a deep sadness… because I genuinely don’t know how on earth I could have felt SO BAD for SO LONG and not really know… how very ill I was.  I was explaining it to a friend and said… it’s like when you have the flu really bad.  You KNOW you feel like shit. But if you continue to feel THAT BAD for a really, really long time… I think you begin to forget what it feels like to NOT feel bad.

I think that this was REALLY, REALLY true for me.  Because when I suddenly didn’t feel bad anymore, I COULD SEE.  The list of things is a mile long, and even now, a month later, I’m still re-discovering things that blow my mind.

Around day four or five, Joe said “You seem like you’re kind of sad.”

“I am,” I said.  And I was.  I was sad because it had occurred to me when I woke up that morning and texted my sister, that the reason I never texted anyone in the morning was because not only was I usually tired… I was usually finally giving in and getting out of bed about six minutes before I walked out the door.  I have had days… in the last six months… where I have forgotten to brush my TEETH.  Where I have forgotten to put on deodorant.  I for-sure-as-hell have left the house without makeup on and with my hair in a messy bun because I didn’t have the time or energy to actually do my hair.

I was responding to my sister’s text, and it was so easy to type the response.  It wasn’t hard.  This thought gave me pause, because it wasn’t until that moment that I realized HOW HARD it was to do before.  I had a flashback to a moment that has occurred more than once in the last year.. it’s me, typing a text to my boss to try to tell her that I will be in late.  And I can’t even type the right words.  Spellcheck or my bumbling fingers will type out something nonsensical… and I truly cannot. keep. my. eyes… open… long enough to type the text.  I’ll fall asleep mid-text.  Hit send before I’m ready.  Type it and forget to send it altogether.

Or the same thing with my alarm. I would be resetting the alarm for another ten minutes of sleep and accidentally move it to four hours later.  Or reset the alarm and not turn it off. Or turn off the ringer.

GUYS.  This was daily.  DAILY!  And I didn’t even know … anymore… that this IS NOT what getting up is like for everyone.  I actually did not have the understanding anymore that this isn’t normal.

Joe would get so angry at me.  How did I not realize that I was GOING TO LOSE MY JOB??  How was it just ok to me that I was late?  What was WRONG with me? The entire world gets up and gets to work… how can I possibly think I’m the exception to that?

The answer is that I didn’t.  I didn’t think I was the exception.  I didn’t think about it at all, actually.  I was completely and totally oblivious to the fact that this even IS something I should be thinking about because I’m using all the brain power I have just to try to get the text sent.  Or the alarm set.  And this is REAL, people.

That was my first eye-opening experience.  And since that came, it seems like a million more have followed:

• It’s not just getting out of bed that’s easy.  It’s also STUPENDOUSLY EASIER to work.  By the end of the first week, I had cleared out over 1000 emails (I’m not exaggerating in any such way) from my work email inbox.  Everybody at works always talks about how it makes them crazy to have all these emails in their inbox, and the second that they finish them (or as soon as they possibly can, they move their emails to another folder).  I have folders within my inbox, sorting out High-Priority To-Do’s, Print and file, etc.  So I essentially have made folders within folders of things to do.  By the end of the first week, I had my inbox down to about 75.  By the end of the second week, I had it down to 35.  At this very second… a month later.. I have 37 emails in my inbox.

 

• Thursdays are my late nights at work.  On average, I work until 8:30 pm or so on Thursdays, because there are certain tasks that have to be done prior to Friday morning.  The week before Xyrem, I didn’t leave the office until 10:30 pm.  On week 2 of Xyrem, I had to have my “Thursday” done by noon on Wednesday due to a quarter-end deadline.  I found out about this early-deadline on Tuesday, and I had it ready by the deadline on Wednesday.  On the third week of Xyrem, I had everything done by 5:15 pm on Thursday evening.  Last Thursday, I left at 5 pm sharp.  On Friday, I genuinely almost ran out of things to do.  My productivity is about 100x faster than it was a month ago.  And it’s because I am actually able to THINK.  Just like I wasn’t able to think about whether or not it was “ok” to be late, I truly was operating at the max of my ability and it was getting to the point where even that isn’t enough (10:30 pm???)   I was doing everything in my power to complete all of the tasks that needed to be done… and I was failing miserably at it.

 

• I quit smoking somehow as a part of all of this.  This was always Joe’s biggest thing, his number one if-he-could-have-anything request.  I didn’t really consciously decide to, I just ran out of smokes and decided to go for it.  I am officially slightly-over a month SMOKE FREE.  Not looking back.  If I am being given this amazing opportunity to change my life, to rewrite it into anything I could ever want, I am going to choose to be healthy.

 

• I am now doing my make-up and hair every morning.  I’m so embarrassed that I wasn’t before.  This has always been important to me…. how did I get so tired that it just wasn’t anymore???

 

• On the weekends, I have time to Do Things.  It is entirely possible to watch tv, read, go shopping, give the dog a bath, play with L, clean two rooms, cook dinner AND a pie, and take a bath myself all in ONE SINGLE DAY.  Blasphemy.  But seriously?? It really is.  I did all that, yesterday.

 

• My memory, personality, and overall interpretation of life was SO, SO, SO COLORED by narcolepsy.  It’s like I was looking at the world through sleep-blinded glasses, but I had no idea I was doing this. I knew that my memory was not right, but I didn’t think it was something that was fixable.  I guess I just chalked it up to being a symptom of narcolepsy, albeit a scary one.  I had NO CLUE that my brain really and truly was suffering from lack of sleep.  Because overnight – the effect Xyrem has had on my brain has completely and totally restored me to my former rational, kind, sparkly self.  This isn’t MY view – it’s Joe’s.  He literally pulled me into his arms and said  “MY GOD, I HAVE MISSED YOU!  It’s like you went to bed and woke up and you’re suddenly the girl I married again.  You are YOU.  And I haven’t had YOU in years.”

And he meant it.  I can’t possibly begin to explain what what it’s like to look your oldest friend, your lover, your soulmate, in the eye and KNOW… that the eyes you’re looking out at him with haven’t been there for a REALLY, REALLY LONG TIME.  I’m genuinely trying to place it, the spot in time where things changed.

It’s like the reverse of “Peggy Sue Got Married”… where she goes back in time and gets to see her family again.  It’s like I suddenly woke up to find I’m 42 years old and my children are nearly grown and an incredibly-less-skilled and troubled version of me has been operating in my place.  It’s a really, really disconcerting way to feel.  And all I can do is THANK GOD that I found my way to Xyrem, and THANK GOD that there are scientists that are working to SAVE ME, and all the other sleeping beauties like me out there.  Because I didn’t go away, I didn’t stop existing…. but for all you (or I!) knew, I may as well have.

If I hadn’t taken Xyrem, both Joe and I would have forever thought that this was just a sad and shitty way our cards played out. I was just not the same anymore… not sick, not struggling with narcolepsy, and definitely not sleep-deprived at an unimaginable rate… but truly and completely a different person.  

This is an unbelievably terrifying thought.

I couldn’t have saved myself, because I couldn’t remember that anything else once existed.  Joe couldn’t have saved me, my family couldn’t have saved me, NO ONE could have saved me, because we didn’t know that there was a key and a lock – that KRISSY was even still there.

It makes me think about things like Alzheimers and dementia in an entirely different way.  What if there was a chemical of some sort, that you could give to them and it would UNLOCK their minds?  Because I truly feel that this is what Xyrem was.  It unlocked my brain.  There’s no other way to explain how I went to bed one day and woke up the next as ME – the me I used to be.

It’s not a permanent unlock.  I will have to take this every day.  If I even miss the second dose, I can feel myself slowing down, my thoughts slowing down… to think through things becomes harder and slower.  But the fact that there IS a key, means that there may be more… or maybe there will be a doctor who someday is able to take the whole goddamn door frame out and I won’t have to worry about it anymore.

But until then… THANK YOU, Xyrem, for giving me back my life.  It truly is a much welcome, much missed, and old but NEW… existence.  It has truly changed my life.

 

Starting on Xyrem

I took my first dose of Xyrem on Monday, September 10th.  It tasted HORRIBLE.  Like a salty, nasty, slurp right out of a conch shell baking in the sun.  If you can imagine what that might taste like, then you’ve got a good idea of what that awesome little clear liquid mixed with water tastes like.

Then I laid back on my pillow, took a deep breath, and waited for the “date-rape” drug to knock me out.

And waited.

And I waited a little longer.  My feet grew oddly cold, and my tongue felt unusually cool in my mouth, and my vision got kind of funky, but I most decidedly was not falling asleep.

I was terrified of trying this drug, and had read the warning instructions more than once to make sure I had done everything exactly as prescribed.  In my head, this was going to hit me like the cartoon-version of narcolepsy that everyone but us imagines it is… like WHAM!  And she’s OUT.

But the reality was completely different.  Not only was I not out, I wasn’t really even tired.  If anything, I became more animated and opinionated.  Joe thought my chattiness was funny and kind of cute, and he kept trying to get me to quiet down.

I kept being saying that I needed to go to the bathroom (because I was also terrified of wetting the bed, thanks to all those warnings) and so he finally relented and let me go.  I carefully made my way to the bathroom, and then decided to head into into the closet to find something cooler to wear.  Without warning, I got super-nauseous and ran back to the bathroom where I threw up.  That quickly ended my middle-of-the-night excursion.

That first night, I genuinely slept MAYBE fifteen minutes the entire night.  In the morning, when I finally gave up and got up to make coffee, I was surprisingly NOT exhausted.  Pissed off, frustrated, and confused, but not exhausted.

The next night was literally almost a mirror image of the first.  Except that I was tossing and turning so much that I fell OUT OF BED.  Joe was already asleep. So I pulled over the pillow that had came off the bed with me, and I just went with it.  I got about forty-five minutes of sleep on the floor, and that was it for the night.

Between Monday morning and Friday afternoon (five days, and four nights), I was going into the weekend with about FOUR AND 1/2 HOURS OF SLEEP.  Total.  I was ridiculously upset and dumbfounded at how I could possibly be functioning during the day.  It made NO sense.  How can someone who has narcolepsy, who needs SLEEP, be functioning AT ALL on four hours of sleep over the course of an entire week??

Joe and I were about to find out.  And it was nothing short of earth-shattering for us.

The sleep study – Part I

So here we were, the moment of truth.  The kids had been picked up by Drago and Carmen so I was alone in the house.  I went outside and sat on the deck and had a cigarette, playing some dumb game on my kindle.  I was nervous as HELL.  I really wanted to go take a bath before heading to the research center, but I was quickly running out of time.  Playing my game on the deck, I tried to relax but I couldn’t.  All I could think about was what this test was going to be like, what if I couldn’t sleep at all, what if they found out it was nothing (which Joe is betting on) or worse, what if they found it WAS something?  Suddenly I looked at the clock.  I had 30 minutes to get to the research center, which was 25 minutes away.  Shit.  I have to go!

I ran upstairs, threw my kindle in the bag I had somewhat packed, and then headed back out to the car.  My anxiety was getting worse by the minute, and I chain-smoked two cigarettes on the way there.  Because that was going to help things.  I don’t even smoke in my car – ever.  But that night, I couldn’t help it.  Of course the highway traffic HAD to be congested that night, and because I was going a different way than I usually do (I usually go to appointments from work) I wasn’t even 1000% positive of where I was going.  I missed an exit that I thought was the right one, and then I wasn’t sure where to go… ahhhh!  Seriously, if I hadn’t been so worked up, I probably would have had no problem realizing where  I was going but my brain was going a million miles a minute.

I took the exit, and came to a stop light.  It was 8:56 and I was supposed to be there at 9:00.  I called the number I had and the tech answered.  I told him I was very close; I promise, I’ll be there in minutes.  About five minutes later I arrived, hurriedly stubbing out my cigarette and grabbing my stuff out the back of the car.  Did I want my crochet stuff?  Yes? No?  Would I look like a dork crocheting?  Would it relax me?  Ahh – I can’t find the crochet hook! Do I have a few more minutes? Which door am I supposed to go into?!  This parking lot is empty. Am I sure I’m in the right parking lot??

Calm the fuck down, girl.

I gave up on finding the crochet stuff and headed for the door.  Unfortunately, I really was in the wrong parking lot and had to walk around the entire building to find the security door which would let me call upstairs for the tech to come down and get me.

The tech came down and smiled, letting me in.  He was nice – I wouldn’t say I was necessarily relieved by the man who greeted me, but at least I was here and in the building.  The rent-a-cop patrolling the main level didn’t help things much. I tried to take a couple of calming breaths in the elevator but all I could really think about was how he could probably smell the smoke on me and was very likely disgusted.  It’s always so gross to smell smoke on someone if you yourself are not smoking.  Does smoking make sleep issues worse?  Is he going to report me to someone, like my doctor?  I really should have thought about that before my two cigarettes.  Of course these thoughts made me instantly want another one.

Note to you, my sweet reader – I swear to you that all of the things I am typing about here were really going through my head.  Who knows how much ELSE I was thinking about that I don’t remember.  I was a giant HOT MESS.

So after I gave up trying to take a few calming breaths, I started chatting.  I am very, very good at chatting to break the silence.  I work in HR, so it’s usually my job to break the ice with candidates, associates, new hires, etc.  But tonight, given that I was clearly flying a million miles an hour in my nervous head, I was especially chatty.  This poor guy probably didn’t know what to do with me.  I wonder what most of the patients that come in are like.  Is there a certain “type” that we are, us weird-issue-with-sleep people?

My room was sparsely furnished, and it really did look like a hospital room.  I had read somewhere that I should expect that the room would be furnished more like home or maybe kind of like a cheap hotel, designed to make you feel at home and comfy.  Not this one.  It consisted of a pleather chair (that did not recline, I checked), a full-size bed (better than a twin) with a rainbow-striped comforter, a little night stand with a machine on it, shades drawn at the windows with towels at the bottom (weird), a small tv, a normal hospital-issue tray table, a rolling office chair and a normal hospital room bathroom.  Most expensive “hotel” room I’ve ever stayed in in my life.

He left me for a few minutes to check on his other patient.  There were two of us that night and I wondered about the other person.  Was he or she as nervous as me?  Why were they there?  Same reasons as me?

He came back in and had me sit down on the chair, where he proceeded to tell me about how he was going to hook me up to all of these electrodes.  But the first thing he did was tell me that the first part of the study was to see if I had sleep apnea and needed the cpap machine.  He made me try it out so I could see what it was like to have positive air flow coming in my nose.

OH MY GOSH.  I could NOT handle it!  I felt like I was drowning – in air.  I don’t ever breathe through my nose really.  My natural instinct was to fight it, and I absolutely could not do it through my nose without opening my mouth.  I’m sure I looked like a fish out of water.  Pffaaaww.  Pffawww.  I would blow out the air that was “drowning me” instantly through my mouth.  I just couldn’t do it.

It’s ok, it’s ok, he said.  Some people just can’t do it through their noses, they are mouth breathers.  OK, well then clearly I am a mouth breather.  So then he gave me the version that is for people like me, who can’t handle the nose thing. Ugh.  I hated it instantaneously.  I could breathe, but…. nooooo….. I do NOT want this thing.  I would look like an alien in bed at night.  I need it quiet at night, this thing makes noise and just… no.  No no no.  NO.

I told him this and he tried to reassure me.  It’s just white noise, you’ll get used to it.  If you need it, you just do… it’s ok.  Lots and lots of people do.  It can be life threatening.

At this point, I am seriously thinking about running.  I have gotten myself into some awful wacky shit here; I just CAN’T DO THIS.  Please, please, please God, don’t make me wear this for the rest of my life.  I eyed that machine like it was radioactive, and contemplated just how much I really wanted to know what’s been going wrong with me.  Was it worth getting saddled with THAT, forever?

I think Mike (that was his name) was pretty sure I was ready to bolt because he picked right then to start adding electrodes.  You can’t get very far if you’re hooked to a gazillion wires.  Remember that rainbow-bedspread I told you about?  Turns out the comforter was just brown.  All of those rainbow lines were electrodes that he attached to me.

Most of them were in my hair.  They used this weird silicone/putty/wax stuff to adhere them to my head.  I had them on my temples, my jaw, my chest, my sides.  I had weird belts strapped around my chest and waist, electrodes on my legs, everything.  I have a picture that I would show you if I wasn’t afraid it would wind up as some hilarious meme on Instagram.  So you’re just going to have to go with the head shot.

Yep.  Looks pretty cool, huh? Nothing like weird blobs of cotton all over your head.  So anyway, he finishes attaching these everywhere and then he leaves me for a minute to go get the other guy set up.  I unpack my laptop, my kindle, and a book and get it all situated.  Just as soon as I’m done he comes back in.

Alright, he tells me.  It’s time for lights out.

Umm.

It’s like 10:00.  I don’t go to bed until like 10:30 – 11:00 regularly.  I feel like I mainlined a pot of coffee and I have Rainbow Bright cords coming from my entire body.  I’m supposed to just lay down and go instantly to sleep??

But Blue Cross and Blue Shield is paying a lot of bucks for this, so I do what I’m told.  Mike explains that for the first two hours of the test, he will be watching to see if I have any sleep apnea issues.  If I do, he will come in and put the cpap machine on me.  If I don’t, he will let me sleep until 6 am at which time, I will be woken up.  He also explains that if I have to go to the bathroom, all I have to do is sit up and turn to the side of the bed.  He will come in and get me situated so that I can go use the bathroom.  Ok, got it.

He goes out and suddenly I hear him over the intercom.  He instructs me to do a few things.  First, lay completely still with your eyes closed.  Done.  Now open your eyes, but still stay completely still.  Now flex your feet.

Without moving your head, look left, right, up, and then down.  Do it again.  Now clench your jaw.  Now relax.

Ok… goodnight.

The room goes dark except for a red light up near the tv.  Mike’s not talking to me over the intercom anymore, and I’m just laying here in silence.

Oh wow.  I don’t know how this is going to work.  I am seriously like not even kind of ready for bed. I don’t know how to go to sleep on command, unless it’s during the day and I have my book.  I feel like a ticking time bomb, too, because what if I can’t go to sleep at all, and the whole study is ruined?  Can that happen?  He said sometimes people have trouble going to sleep.  What if I can’t sleep the whole night?

And that freaking machine over there is haunting me too.  I’m sure I’ve been laying here for ten minutes now, which means, if he’s only watching for two hours, I’ve only got one hour and fifty minutes left to sleep.  To prove that I do or don’t need that machine.  Aaaahhhhhh!!

I roll this way and that.  I refluff my pillows.  There’s a thing, some kind of air meter or something in my nose and it’s irritating.  I keep trying to shift it so I won’t be able to feel it there, bothering me.  I pull the blankets up and tuck myself in down under them, so that only my hair is showing.  Do you suppose Mike has to be able to actually see me to tell stuff?  And … ok… that’s just weird too.  It’s just me and Mike and whoever in the room next door.  Is he watching me through the camera? What is my brain doing?

And then… I start thinking about how much I don’t want that cpap machine.  The more I think about it, the more anxious I get.  Pretty soon I feel like I’m not getting enough air, so I’m gulping air.  Then I think, what if he thinks I have sleep apnea, so I try to breathe normally.  The more normal I try to breathe, the weirder my breathing is.  This goes on and on and on.  DAMN IT!  I cannot fall asleep!  And I can’t breathe!  And there’s some dude, nice as all get out, but still… watching me on a camera in the dark and that’s just fucking unnerving.

OH MY GOD.  THIS IS RIDICULOUS.  Get your SHIT TOGETHER, WOMAN.

Deep, deep breath.  And then I finally, finally, fall asleep.

(And good luck – sleeping with this thing trained on you all night.)