Annabelle Speaks

Narcolepsy. Yes, Really.

So, how was your week?  Me?  Oh, I just got diagnosed with narcolepsy.  No big.

(OMGWTFBBQ!)

So that happened.  If you follow me on Twitter or Facebook (or know me in real life), you already know that I went in and had a 24 hour sleep study a few weeks ago.  I had both the overnight (polysomnogram) and daytime (multiple sleep latency test) studies.

You should have seen the FULL set of wires I had overnight, but I couldn't get to my phone to take a picture of them, so you only get the reduced set of wires for a visual.

But I'm getting ahead of myself.  First, some background:  I've never been a terribly good sleeper at night.  I supplement with naps pretty much every day that I'm not at work, and I always have.  I remember often taking naps after school even in middle/high school.  Daytime sleepiness is just something that always was, and I mostly attributed it to the fact that I'm genetically unable to sleep through the night and generally wake well before my alarm for no good reason.  It runs in my family - my mom and maternal grandma were always poor sleepers, too, though they can maybe also blame their coffee habits to some degree.  In my lower-self-esteem moments I attributed my tiredness to me being lazy.

But this year something snapped and the sleepiness I have always dealt with sort of took over my life.  I'm always exhausted around April 15th (and for a few weeks following), but this year I didn't bounce back to a "normal" level of tired like I usually do.  I was still painfully tired well into the summer.  A few times in July I either left work to go home and nap or took a nap in our office "comfort room" or on my office floor to take the edge off.  I was so tired it was painful.  On weekend days (or vacation days) I would most often end up taking not one but TWO naps, in addition to a relatively normal 7-8 hours of sleep at night.  After talking to my regular doctor and my endocrinologist, having my thyroid, iron, and vitamin D levels checked, I scheduled a sleep study per their suggestion.

I met with the sleep doctor and gave her my general background/health health history, and she scheduled the nighttime and daytime sleep tests for me.  She said at the time that she didn't think I had sleep apnea/any of the more common sleep problems and did suggest that narcolepsy was a possibility, but I never took that too seriously.  I've never once collapsed or fallen dead asleep while crossing the street/eating dinner/etc, so CLEARLY that was just silly.  I joked about it for weeks.  Narcolepsy!  Can you believe it?  Ha, ha...ha?

The polysomnogram test involved sleeping with roughly twice the number of wires pictured above stuck to my person, along with straps across my chest (measuring breathing effort), wires on my legs (measuring for restless leg syndrome), EKG pads on my chest, an oxygen-measuring tube thing in my nose (measuring the air coming out, not blowing oxygen in), a tiny microphone pasted to my cheek, an oxygen and pulse sensor on my finger, etc.  It was not overly comfortable at first, but I did manage a full 7.5 hours of sleep.  The results of the overnight sleep study were as follows:

1. I do not have sleep apnea.  Yay!

2. I wake up more often than I realize, but it isn't from lack of breathing like with sleep apnea.

3. I have a lot more REM than normal.

4. I fall asleep astonishingly quickly, even with 100 wires stuck to my person.

Together all that meant was that it was a good thing we had the multiple sleep latency test scheduled for the day, because they needed more data.  Had they found sleep apnea or something else that could explain the excessive sleepiness, they would have ended the test here.

The second part of the test, they daytime part, required a reduced set of wires as pictured above, plus the EKG pads.  All the rest came off, thank goodness.  I was required to take five 20 minute naps, one every two hours, starting two hours after waking for the day.  So after waking at 6pm I had scheduled naps at 8am, 10am, 12pm, 2pm, and 4pm.  Between I played on my iPad and read.  For each nap I was given 20 minutes to try to fall asleep.  If I didn't fall asleep within 20 minutes they would end the nap there.  If I did fall asleep, they would wake me 15 minutes after falling asleep.

Because I am ME I was watching the clock and knew that each one of my naps was terminated roughly 20 minutes after it started, so I assumed I was failing at sleeping and wasting everyones time.  I reported at the time that I thought I fell asleep in naps 4 and 5, maybe, but I wasn't sure.  I reported "vivid daydreaming like dreaming", which is why I thought I might have been asleep, but I wasn't entirely sure (I thought I might have been dreaming while awake, which happens).  The actual results were as follows:

1.  I did not fall asleep in nap one, which was no surprise.  I was trying too hard and was really anxious.  I'm told that is pretty common.

2.  I DID fall asleep in ALL of the remaining naps, in as little as 90 seconds.  My average time to fall asleep, for naps scheduled every two hours, on a day following a full night of sleep was FOUR MINUTES.  Woah.  This was very high on the "daytime sleepiness" scale.

So, those results, combined with my self-reported "early-waking" brand of insomnia, a life-long affinity for naps, etc. resulted in the doctor coming to the conclusion of narcolepsy with bonus insomnia.

What it means:  No, I'm not likely going to start falling face-first into my mashed potatoes at the dinner table, dead-asleep.  The often comically portrayed fainting style of narcolepsy (cataplexy) is present in only about 2/3rds of people with narcolepsy.  The other three major symptoms - sleep paralisis (waking up and feeling paralyzed for a few seconds), hallucinations/crazy vivid dreams while falling asleep, and excessive daytime sleepiness are all present for me to some degree.  The excessive daytime sleepiness is my biggest problem.  The sleep paralysis has only happened to me a few times and isn't severe at all, and doesn't interfere with anything.  Oddly I knew what it was from a television show so it didn't/doesn't freak me out.  And the hallucinations/crazy vivid dreams are amusing and entertaining far more often than they are scary/nightmares; I actually kind of like them.

For treatment we are doing two things - medications (stimulants) and sleep-specific cognitive behavioral therapy.  I started the first attempt at a stimulant medication (Nuvigil) yesterday and I felt pretty darn good.  I didn't get sleepy at all until near 5pm, and that was only slightly.  I was alert and able to focus all day, which was spectacular.  I joked that I was pretty sure I could see through walls on this drug, but really simply not being dead-on-my-feet-tired feels like a superpower to me.

Unfortunately I was also awake (FOR THE DAY) at 1:15 this morning, so there is still some adjusting to do.  But I'm hopeful that since I at least felt good during the day that there is an answer that doesn't involve me needing to rent an apartment near my office for daily afternoon naps.  The sleep-specific cognitive behavioral therapy we will schedule when I go in for a follow-up in two weeks.  I don't know much about that yet, other than I am all for trying any non-medication treatment they can come up with.

So!  That's where I'm at.  Mostly I'm just happy to have an answer that isn't "you're lazy, get over it" which was my biggest fear.

This has already gotten incredibly long-winded, but perhaps I missed something.  Feel free to ask any questions you have in the comments.  I've never known anyone with narcolepsy (that I'm aware of), and it is a curious condition.  Ask away.

It's Still Funny Nearly A Month Later

I've subscribed to CNN Breaking News Alert emails for a few years now.  I usually just skim-and-delete, not paying much attention to them unless there is a story that catches my eye.  And yet there is a particular Breaking News Alert that I've saved in my inbox since September 15th, purely because it makes me laugh every single time I read it.

I would argue that this particular "breaking news alert" was neither breaking nor news and didn't really deserve an alert.  This, in and of itself, would not have drawn my attention as that is true of about 50% of these emails.  This particular email delivered the shocking alert that some people in the Republican Party love the Tea Party, some disagree with the Tea Party, and still others don't really much care one way or the other.  But the lol-worthy sentence was at the end (direct quote):

On many issues, the two wings of the GOP are in accord, but they aren't in agreement on issues such as the deficit, global warming, evolution, abortion, same-sex marriage, the Federal Reserve, the Department of Education or Social Security.

My translation:  The two wings agree on so many things!  Really everything except for this really long list of all of the major issues in recent elections!  But other stuff?  They totally agree on!  So MANY THINGS!  No, really!

Out Of Character, In A Good Way

I've never been what you would call an athletically gifted person.  In fact I'm rather the opposite.  I looked so goofy running as a little kid it became an extended-family joke, I worked very hard to not have to touch the ball in my brief stint in basketball, and I once sprained my ankle playing mini-golf.  My track record is not so good.  I have the natural coordination and grace of a drunk hippo on roller skates.  I accept that, and am generally happy sitting quietly on the couch trying not to sprain anything.

My brief relationship with running aside, I've been quite content with my couch-sitting habits.  Unfortunately that doesn't mesh well with wanting to be a healthy and in-shape person, so I've clearly got some changing to do.

And that's pretty much how I found myself at the gym on Tuesday evening, waiting for my first ever appointment with a personal trainer.  An appointment that I had been looking forward to all day.

*record screech*

Yes, you heard me right.  I was looking forward to an appointment with a personal trainer.  An appointment that I knew would contain much sweating and lifting and sore muscles and likely coordination-failure, all in front of a perky, perfectly in-shape personal trainer.  No one was more surprised by my excitement about this plan than me.

Even more surprising?  I'm still excited about this personal-trainer thing, a day and a half later.  Sure, I can't get on/off the toilet without wincing at the soreness of my thigh muscles, but I lifted more weights in that one hour with the trainer than I probably ever have in the rest of my life combined, so a few riped-to-shreds muscles little soreness is fair enough.

My trainer is pretty awesome, too.  She is somewhat perky, and she is in irritatingly perfect shape (she used to be a dancer and went to Juilliard for goodness sake), but she didn't make me feel like a failure for only being able to lift X pounds in any of the exercises, and she made trying new machines and different exercises far less scary than such things feel when I'm on my own.

My plan at this point is to continue seeing her once a week through the end of the year.  January through April 15th will be too hard for sure, with how busy I am at work that time of year, but I have a few months of down-time now to hopefully get into some better exercise habits. 

As long as I stay away from mini-golf, I should be fine.

**********

For Chicagoans who may be curious, the gym I've been going to is Galter Life Center and I love it.  HIGHLY recommended.  The specific trainer I'm seeing there is Suzanne Harris.

POTTERMORE!

Because I am an incredible nerd, when I saw this on my screen the other day I gasped so loud a coworker came into my office to check on me and make sure everything is okay because COME ON.

Congratulations!
You’ve successfully validated your early access Pottermore account. You will be one of the lucky few to shape the experience before the site opens to all in October.

How could I NOT be excited about this?  SO EXCITED.

Leave a comment if any of you are on the site too.  I'm not sure when we'll all actually be in the beta site (even though I have an account they are staggering access to the site itself), but hey, we'll be in soon.  I hope.  My name is HeartNight94, which makes me sound like an emo 12 year old, but oh well.  I think I can live with that.  For Pottermore, I can certainly live with that.

Family Weekend

My parents visited last weekend, and I know it isn't "cool" of me, but GOD I wish they lived closer.  We have so much fun whenever we're together.  I mean, even just doing something as simple as riding the bus.

The matching outfits really make the picture.

My Mom in particular has boundless energy, to the point that she wore out all three of our cats on a daily basis.  I can't wait until she can do this to some grandchildren.

We also took a trip to the Museum of Science and industry where I found my new favorite hat in the gift shop.  It had a handle on the top for special portability.

Also at the museum my mom found her very own Fairy Castle.  For those who don't know her, my Mom's name is Colleen, and her maiden name is Moore, thus why this is HER fairy castle.

It was just an all around spectacular weekend.  I love my parents to pieces, and I cherish every moment we get to spend together, whether we are doing big things, or little things.  I can't wait to see them again at the end of the month when I get to visit Minnesota for Labor Day weekend.

The Beginning of Happily Ever After

This weekend was a crazy, non-stop party of BUSY with family in town visiting, a surprise party for my friend Jenn, an unexpected visit from someone I've known on-line since 2003 but never met (she lives in the Netherlands), and, most importantly, my little sister's ENGAGEMENT.

You guys!  My baby!

That kid is one of my favorite people on the planet, and has been since I met her when she was about 14 months old.  She's not actually my sister, but a neighbor.  For all intents and purposes our families have merged though, so it totally counts.  I've known her almost her entire life, and her brother for his entire life, and they are just the sun and moon to me.  So it was with much excitement and a lot of happy tears that I helped Heather's now-fiancé John pick out the hotel, restaurant, and other assorted plans for the Big Weekend.

John assigned me a "super secret spy name" in his phone so if Heather saw his caller ID at any point she wouldn't know it was me and get suspicious.  He named me Veronica, declaring that it was a perfect sexy-sophisticated Russian Spy name for me (Teryn has since named herself Betty, and now we will never have proper names in John's phone EVER).

After a baseball game and dinner at a fancy restaurant, Heather and John headed to Navy Pier to see the fireworks.  Thanks to under-the-table texting I was able to catch sight of them coming in and follow them all secret like to get photos of the proposal.

She didn't know I was there until after the fact, when John pointed me out and she started crying again.  She hugged me tight and cried and told me how happy she was and said that it meant the world to her that I was there for that moment and my heart just about exploded from happiness for her.  I didn't think it was possible for me to get any more emotional about the evening until she called her mom on the phone to tell her and only managed to choke out "Mommy!" once before bursting into happy-sobbing-tears again.

The next day Heather's mom emailed me and thanked me for being there for Heather and for "loving [her] daughter as much as [she] does".  I told Teryn about the email and she said it best with her response, "How could you NOT?"  I know, right?

Congratulations, Heather and John.  I couldn't be happier for you if I tried.  John, welcome to the family.  I love you both to pieces.

Ready Or Not

I intended to come here today and write a nice, happy post about my weekend camping at my family reunion and how much fun I had spending time with all of my aunts, uncles and cousins.  And maybe I will write that post, but this morning something else happened that I need to write about first.

This morning I learned that my therapist is moving back east, to New Hampshire, at the end of the summer.  Frankly I fell to pieces when she told me the news.  I cried for pretty much the entire hour of therapy this morning, and I'm still reeling.

For those of you who haven't known me as long/as well, the backstory is this: I've struggled with on-and-off depression and more-on-than-off anxiety my entire life, but it was never treated in any way, I just slogged through.  In January of 2008 I was assaulted on my way home from work late at night, and by March of 2008 my wife and I knew that I was, to put it bluntly, Not Dealing Well with the fallout of the assault.  I sought out therapy, eventually getting a diagnosis of PTSD (along with major depressive disorder and generalized anxiety, just for fun).  I've been seeing Therapist ever since, along with other specialists, and if it weren't for her I wouldn't be here right now.  There were months at a time where the hour (or several hours) of therapy I had each week were the only thing keeping me on my feet.

But I've been doing well lately.  My depression and anxiety are mostly under control, and life is going well.  This is good!  But I certainly wouldn't be considering leaving therapy entirely yet, if not for the fact that my therapist is leaving me.

I am not a fan of change.  I have serious fears of abandonment.  It feels like it is my fault that she is leaving because I neglected to worry enough about that possibility.  If I worried more, clearly the power of my worry would have kept it from happening.  I'm torn between falling back into all my unhealthy coping mechanisims and just saying to hell with it all, and wanting to do everything 100% perfectly for the next ten weeks so Therapist can leave with a positive image of me, and be proud of me.

Straight up - I'm scared.  I know I'm in a completely different place than I was a few years ago, and I am in no way a danger to myself anymore.  But to think about trying to maintain this place without the very therapist that helped me get here scares the shit out of me.  What if I relapse?  What if I falter?  What if I can't find another therapist that I connect with in the right way?  Can I do this on my own?

I guess it's time to find out, whether I want to or not.

Ready or not...

Five Good Things

I have no real form or narrative here, but I need to get that food issues post off the top of my blog because WOW am I sick of looking at it, and so it is time to talk about good things.  Happy things!  Things I'm thankful for.  You know the drill.

 

1.  I was invited to dinner/drinks at my friend Jenn's house last Saturday night where I got to meet her interns, who were all adorable and lovely and I wanted to keep them, but alas, I have my own interns (who are also lovely, for the record).  We were just planning on having dinner (and wine) and watching fireworks (and drinking wine), but somehow we ended up going out until past three in the morning and then I remembered why I don't usually hang out with 21 year olds.  Ow.

 

2.  Sunday I got to see my "little sister" (actually a neighbor to my parents whom I used to babysit), which positively made my day.  I love that kid so much.  She's been living with my inlaws for a few weeks while she does her internship (she is going to school to be a physical therapist), and this is the first I've been able to see her since she's been living in the same state as me, and it was awesome.  If I could convince her to move to Chicago and live with me, I totally would.  I love that these kids that I used to babysit (I'm including her brother in this too) have grown up into these awesome PEOPLE that I still like hanging out with just because they are that awesome, you know?  From tiny little babies to friends.  Awww.  I love them.

 

3.  Tomorrow I leave for my 26th annual Fisher family reunion, which will be loads of fun as always.  My family is completely insane, in a good way, and hanging out in a campground for a few days while chatting and drinking and eating our weight in snacks is going to be super fun.

 

4.  So You Think You Can Dance is back, and I love it as much as ever.  Travis (my choreographer boyfriend) had two dances last night, and they were lovely as always.  It blows my mind that artsy people like that can choreograph multiple dances like that in a week.  I feel like those things should take months or something.  Gorgeous.  Now if only I can see some Nappytabs dances soon!  A girl can hope.

 

5.  I have been watching an inordinate amount of Ghost Hunters reruns on Sy-Fy lately, and it is making me want to buy ghost equipment and go out ghost hunting myself.  I've loved sciencey-ghost stuff since forever (I read my way through the 131.--- in the library by like age 10), but somehow I had never seen this show until a few months ago.  It looks like next season will be season eight, so clearly I have a lot of reruns to make it through.  I don't so much mind watching five episodes in a row right before bed, mostly because then I up my chances of dreaming about my Ghost Hunters boyfriend Steve.  We're totally in love, he just doesn't know it.  Don't worry, my wife is fine with it.

Food Struggles

This must be food issues week on the Internet, as I've read several posts on the blogs of my friends about struggles with weight loss, eating disorders, dietary restrictions, and all manner of other food issues.  And while it is comforting, in a way, to be reminded that I'm not the only one in the world with food/body issues, I still end up feeling kind of alone with my struggles.  My adult friends are scouring cooking blogs and discovering fancy foods and excited to eat meat and vegetables and try new spices.  I sit back and identify more with their picky two-year-old who will only eat brown food, or their anxious four year old who gets scared to even see an unfamiliar food sitting on the table.  I AM those kids.  The problem being I'm not three, I'm 30.

 

You all know that I was diagnosed with diabetes back in September as the WORST 30th birthday present ever, and since then I've made some enormous changes to what and how I eat, in addition to the fun running I wrote about yesterday.  Everyone around me in my day-to-day life and online knows about all the good changes I've made and the significant results I've gotten (down about 25lbs currently, after a bit of a gain back towards the end of tax season).  But almost no one knows how impossibly hard I'm still finding this food crap.  It's non-stop exhausting and painful and flat-out depressing. 

 

I don't like food, which is much bigger problem than it sounds like it should be.  It's counter-intuitive that the fat girl doesn't like food, but it's true.  I get great comfort from eating too many fish sticks or chicken nuggets or french fries (feeling over-full of fried things = love, of course), but I don't have a "foodie" bone in my body and would rather take a food pill than have to taste anything more interesting than ketchup.  I'm not a picky eater, I will try anything at least a few times, but I am an extremely picky "liker".  If a food isn't on my incredibly short list of "safe" foods (chicken nuggets, fish sticks, fries, certain brands of frozen pizza, most fruits, potatoes), I have to force-feed myself and psych myself up to simply chew and swallow.  Even thinking about eating something off the short list of safe foods makes me anxious.  Going out to a restaurant where I can't order a fish sandwich or chicken strips is torture and always involves Xanax.  Having to eat anything other than those two things in public is a guaranteed anxiety attack.  It doesn't have to be exotic or something I've never seen or eaten.  If I am in a restaurant and can't order a fish sandwich (plain, no cheese or tartar sauce) or chicken strips (dipped in BBQ or ketchup, nothing else), I'm undoubtedly sick to my stomach with pointless anxiety.  When we were planning my most recent trip home to visit my parents my Mom suggested going to an Italian family style restaurant as a treat.  While I agreed (via email) because I knew everyone else would enjoy it, I teared up with advance-anxiety simply worrying about it. 

 

But now, with the diabetes diagnosis, it is more important than ever to balance what I eat between the proper mix of protein, carbs, and fat.  I can't just eat one thing and call it a day.  I have no choice, and MAN that sucks.

 

It is always easier at first for me to stop eating "bad" food than it is to start eating "good" food.  My first choice in life is to eat my weight in tator tots, my second choice is to eat nothing and go hungry, and my absolute last choice is to eat a variety of perfectly reasonable foods that aren't chicken nuggets and french fries.  I currently eat six times a day (mini-meal/snacks), and I have to force feed myself every single meal or snack.  Every bite involves an internal-cheerleader bouncing around telling me I Can Do It!   I can eat that soup!  It will be fine!  It's okay!  Every single bite.  A cup of soup takes at least an hour to eat.  A turkey burger can take upwards of two hours or more.  I work damn hard to get to 1,100 or 1,200 calories a day without resorting to deep-fried potatoes, unable to force-feed myself any more than that without risking inducing dry-heaves.  Eventually after enough days in a row of such limited calories I crack and eat a huge meal of chicken nuggets and fish sticks and fries (always while alone, when no one is looking, because HELLO SHAME AND GUILT), simultaneously messing up my weight and blood sugar control.

 

I don't think there are any easy answers.  It's just damn hard, and I'm frustrated that it doesn't seem to be getting easier.  I spend at least one night a week cooking with my friend (and dietitian) Jennifer, trying new foods and working to increase my "safe" list, or at least find more things I can choke down that fit the balance of what I'm supposed to eat.  Sometimes it works, sometimes it doesn't.  I just wish it would get a little easier. 

I wish food wasn't so damn scary.

See Anne, See Anne Run

Okay, six weeks of napping really ought to be enough, it's time to come back on-line.  I've been running around like a crazy person for the last few months and I just haven't been on-line as much as I like to be.  And when I say I've been running around like a crazy person, I do mean running, and I do mean crazy person.  I've been running races (mostly 5Ks, plus one 8K and one 4-mile race), and several of them have been in the rain and/or forty degrees and windy.  See?  CRAZY PERSON.  But I have been having fun, despite the mostly crappy weather.

 Coby, Jenn and I at the Shamrock Shuffle in unexpectedly sunny, 85 degree weather.  The forecast a week before the race predicted 50 and rain.  Surprise nice weather!  Only for one day though.

The Race to Wrigley, which is way more indicative of the average weather I've been running in.  Cold!  Rain!  Wind!  Awesome.  We'll just call it "free air-conditioning" and run with it. (PUN!)

For posterity sake, so I can look back at these times after a few more years of running and LAUGH at how slowly I started out, my times thus far are below.  Please remember that prior to last October I had never in my life ran a mile without stopping, so the fact that I'm running at all is plenty to be proud of.:

 

Shamrock Shuffle, April 10th, 2011, 85 degrees and sunny, 8K race: 1:11:43

Race to Wrigley, April 16th, 2011, 50 degrees and raining, 5K race:  38:02

Run for the Trees Arbor Day Race, April 28th, 2011, 50 degrees and cloudy, 5K race:  37:45

Y-Me Race at Your Pace, May 8th, 2011, 70 degrees and sunny, 5K race:  36:25

Path to Progress Race, May 14th, 2011, 45 degrees and CRAZY WINDY, 5K race:  35:45

C-4 Miles Making Strides for Mental Health, May 22nd, 2011, 75 degrees and sunny, 4-mile race: 49:56

 

Not bad for a beginner!  Right now I'm not yet signed up for any more races, but that is mostly due to final exams, travel for family stuff, and general weekend busyness.  There will be more races, oh yes there will.  And no one is more surprised by that statement than I am.

**Anneberger is what my wife calls me, just "berger" for short.  Yes, really.  No, it is not nor has it ever been my actual last name.

Sign by Teryn, made for the Shamrock Shuffle when she hauled herself downtown to watch me run.  Now it is taped to our bedroom wall for daily inspiration.  Also because I'm too lazy to take it down.