Fuck you, Narcolepsy.

Fuck you, Narcolepsy.  You pin me to my bed, suffocating beneath my once cozy blankets and unable to cry out for help.  You tell me lies of thunderstorms, events and even entire days, only to find I haven’t left my bed.  You leave me feeling isolated from dear friends, and force me to live a secret life from my colleagues.  The mental fog you cast over me by 11 a.m. leaves me unable to keep up with lectures, conversations with peers, and makes me look downright stupid to professors.  I waste vacations with friends napping instead of enjoying their company.  Everything from what and when I can eat, to when I can drive, to when I MUST be in bed is dictated by medication.  You inspire rage within me instead of compassion when I hear a friend complain of being “sooo tired you don’t even know,” or an elbow injured in the gym.  I used to lift.  Now cataplexy scares me away from the weight room, and even a jog around the block.  I will never recover from narcolepsy, so hearing about your frustration from an injury that will heal with rest is absolutely maddening.  

My illness is as common and debilitating as MS, but is the butt of jokes.  It is misunderstood even among healthcare providers.  We do not fall asleep in our soup.  We are as sleepy as a normal individual would be after three days of total sleep deprivation.  We are not stupid.  We are not lazy.  It is not a psychiatric condition, part of my hypothalamus has been destroyed by my own immune system.  

Tomorrow I will have to sit through a lecture about my condition, presenting information that is flat out wrong.  The author of our textbook makes outrageous claims without any citations.  I want to change the healthcare system from the inside out, but to keep my spot in the program I must bite my tongue and regurgitate this bullshit the graduate and get my license.  

I have to explain my condition to doctors, the insurance company, and that pharm tech at CVS who gives me weird looks when I come in for yet another prescriptions that I know will need prior authorization.  

So it’s official: I have hypnogogic hallucinations.

I woke up about 4 a.m., realized I needed to get up to pee, but instead rolled over with my CPAP hose (a surprisingly challenging feat when one is only 1/2 awake).  

“I should just get up before I fall back asleep and have a sleep paralysis episode,” I thought to myself and tried to get up.  My left arm felt numb and my legs wouldn’t move.  I then realized my eyes had closed.  

“Shit, it already happened.  When the hell did I fall asleep?!  I need to wake up and get to the bathroom before I really conk out.”  

In a split second my brain had been sucked back into REM sleep.  As I ran through my list of wake-up tactics, I could hear a storm begin outside my window.  It was a very loud rainstorm, with almost musical raindrops.   Although it was quite loud, it was actually a lovely sound, and I recall wondering if it had woken the rest of my family.   My covers felt uncomfortably heavy and hot, as if I’d turned my heated blanket up to high.  

Somewhere along the lines I apparently succeeded in opening my eyes because I was staring at my CPAP.  Strangely, the paralysis persisted for a moment after my eyelids opened, but when I finally broke through it the rain stopped instantly, and my covers felt like they lost 20 lbs.  I was cool, comfortable, and the room was eerily silent aside from the sound of my CPAP…which my brain had apparently dreamed was a rainstorm…while I was awake. 

“Awesome…now I’m having auditory and tactile hallucinations.”

I got up, used the bathroom, and sat in my room with the light on for a few minutes to fully wake myself up and prevent another episode.  The rest of the night went without a hitch, and this particular episode was more a nuisance than anything else, but it worries me.  What if my hallucinations become frightening and painful?  What if I begin experiencing true, full body cataplexy?  

Yesterday was my first day back at work since the family left for vacation a week ago.  While thinking how much I love the children I care for,  I dropped a bowl full of peanut butter crackers 3 year old Bugaboo had been waiting for.  It was messy, and he was sad, but they were only crackers.  As I was crawling around the floor picking up the bits I could, I found myself thinking “was that cataplexy?  what if I’d been holding the baby? AM I CRAZY?!”

I think what it comes down to is I’m making myself crazy in anticipation of this sleep study.  So for today I’m going to focus on chilling the hell out by the pool with my munchkins.  

A cry for help

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This is extremely off-topic from anything I’ve ever blogged about, but I’m desperate to hear from anyone who has experience with narcolepsy and cataplexy.  For the past two years I’ve been struggling with several increasingly debilitating symptoms involving my sleep.  If you have narcolepsy please please leave a comment or send me an email.  Thank you for reading, an I’m sorry this is so long:

Four years ago I was in an accident (run over by a pick up truck on a sidewalk at school…I was struck in the back of the head by the bumper and knocked out for a few seconds) and diagnosed with a grade 2 concussion. Since then I’ve had more trouble with short term memory, concentration, learning new information, I began experiencing auras with my migraines and episodes of “blanking out” during conversations. I’ve had a normal EEG and a normal neuropsych evaluation (which was pretty much useless since I hadn’t had one before the accident so there was nothing to compare it to).

I’ve experienced sleep paralysis sporadically (once every few years) throughout my life, but about 18 months ago I started having multiple SP episodes a night. I have a very clear memory of when the episodes got bad because that morning I had “fainted” at breakfast while reading the paper. I was seated at the kitchen table reading an article about a girl my age who had been run over by a train. I recall having a very strong emotional reaction to the story, and then hearing an increasingly loud roaring noise, a strange feeling of dryness throughout my body, intense nausea and seeing spots similar to my migraine auras. According to family members, I fell over sideways and hit my head on the windowsill. I was unresponsive for a few seconds, but upon waking I was fine aside from slight weakness in my right arm. I spent the day in the ER being checked for signs of seizures or a stroke, but was sent home with a paper about low blood sugar and fainting. A few things bothered me about this episode:
1. I know it wasn’t low blood sugar because I’d already gorged on Christmas cookies and orange juice.
2. I was seated (and had been for about fifteen minutes prior to the incident).
3. I had a brief, but intensely vivid dream while unconscious…though I could hear my family and feel myself being moved. It was very odd, like being in two worlds at the same time.

That night I had two or three very scary SP episodes. Since then I’ve had up to 6 episodes a night, and haven’t gone a full week without an episode. At first I thought I was having seizures in my sleep, or asthma attacks, or [i]something[/i] because I knew this wasn’t normal. The episodes seem to snowball on each other…I’ll wake up from one overwhelmingly sleepy, somehow start dreaming again without noticing I’m asleep and have another SP episode over and over again. I get them falling asleep…I get them waking up…I get them [i]without fai[/i]l when napping. My primary care doctor told me it was stress, so I started reading to clear my head for 30 min before bed. Didn’t work. Got a prescription for 0.5 mg lorazepam. Didn’t work. Changed sleeping positions (several times!). Didn’t work. Changed bedrooms. Didn’t work. “Gain a few pounds, you’re underweight.” Didn’t work.

I mentioned the episodes to my pulmonologist (who’s also a sleep specialist) last summer and was given a PSG. Surprisingly the results came back abnormal. I spent twice the normal amount of time in stage 1 sleep, only had 10 minutes of REM as well as shortened stage 3 and 4 sleep, and had sleep disordered breathing (more episodes during REM, he hypothesized my body was avoiding REM because it was more uncomfortable). He diagnosed me with extremely mild OSA due to an oversized soft palate and set me up for a CPAP titration study. The titration study was the same as the first, and they were unable to find a good pressure for me. The summary noted “THIS IS NOT AN IMPROVED SLEEP STUDY,” but I was given a CPAP anyway. I’ve been 100% compliant with the machine, but the SP episodes have continued. For the first few months I felt better rested with the CPAP, but now I’m fighting sleep by 11 a.m. in spite of the 8+ hours of sleep I get.

All of this led me to my third neurologist, who tentatively diagnosed me with narcolepsy in the first five minutes of my visit. He said I’ve probably had it since early childhood, but it was exacerbated by the concussion…and the weird “fainting” episode was probably cataplexy. The false awakenings and vivid dreams I have immediately prior to or during the SP are probably hypnogogic and hypnopompic hallucinations. (I’ve been hallucinating and haven’t noticed?!) I’ll have trouble distinguishing what happened before I fell asleep or just after waking from my dreams.

(Also, my 21 year old sister frequently experiences SP, but to a lesser extent than I do. She is also using a CPAP but continues to have trouble staying asleep at night and is exhausted during the day. My father has severe OSA, but of the three of us only he is overweight.)

I’m being sent for my 3rd PSG and an MSLT next week and really don’t want to be set up for more disappointment. I’m afraid that the MSLT will come out normal and I’ll leave without an explanation for the SP. But at the same time, I’m scared of what a narcolepsy diagnosis may mean.

Do my first PSG results sound anything like narcolepsy?
Does the fainting episode sound like cataplexy?
Are there any other treatments for SP besides antidepressants or Xyrem? (I was hospitalized for serotonin syndrome after taking 5 mg of celexa, so anything that touches serotonin is out…and I have an awful fear of vomiting so xyrem terrifies me.)
If I am diagnosed and choose not to take medication, will I lose my driver’s license?

“Excerpt from a Recent Dinner Party”

The Boy and I attended a “dinner party” at his friend house last weekend.  I’m awkward normally, and adding extra people and wine (2 glasses…woo!) just highlights my lack of coolness.

Friend: Wow…this album is so much better when you’re high.

Other guest: *blahblahblah I-smoked-weed-in-college-yay-for me blahblah*

Other guest: *AMUSING-ANECDOTE-ABOUT-GETTING-TOO-DRUNK-AND-TAKING-AN-UNKOWN-SUBSTANCE*

Everyone: Hahaha!

Me: I used to get high and dance to Lily Allen alone in my dorm.

Other guest: ….wow I can’t even imagine you smoking.

Me: I never smoked weed.

Other guests: *sudden interest*

Me: Oh, no not like real drugs…I had really bad allergies and needed a bunch of benadryl.

Ode to One Love Organics

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A crazy bad 12th grade breakout, and my sudden development of psoriasis a year later has led me to be pretty crazy about my skincare.  For the past five years, I’ve obsessively stuck to this routine:

Morning

  1. WASH HANDS BEFORE DOING ANYTHING TO FACE.
  2. Wash face with lukewarm water and a pump of Cetaphil cleanser.
  3. Rinse face with a clean, damp wash cloth.
  4. Pat face dry with ANOTHER clean wash cloth.
  5. Wash hands again.
  6. Apply benzaclin.
  7. Apply Cerave.
  8. Wash hands AGAIN because benzaclin is nasty stuff that will make you sick if you accidentally ingest it, and bleaches the heck out of anything it touches.  (Including hair.  I’ve had mysterious grey hairs around my forehead for the past five years.)

Evening

  1. Repeat steps 1-5 from morning.
  2. Apply differin.

The results of this were…pretty good.  I often got complements about what nice skin I have (including several from dermatologists!), but I still battled the monthly breakout, and out of control psoriasis.  However, fear of angering my sensitive skin kept me from even thinking of changing anything…until two months ago.

I have had this stubborn three inch patch of psoriasis on my shin for the past two years.  I’ve tried just about  With several formal events to attend this spring, I decided I wasn’t going to cover this thing with bandaids anymore…I was going to get rid of it.

Somewhere along the lines, I stumbled upon the One Love Organics website.  On a whim I ordered their “A Little Love” sample pack, with the intention of finding a new moisturizer to replace my paraben laden old reliable.  I got so much more.

The difference in my skin was immediate.  The first time I tried the products my skin was rosy without being rosacea red, moisturized without being greasy, and clean without being tight.  My mineral foundation went on amazingly smooth, and lasted all day.  And that patch on my leg?  Gone in the first three weeks.  The “Love Springs Eternal” serum is advertised as a sort of anti-aging product, but it has been a miracle worker for my psoriasis as well as my mother’s eczema.

I can’t recommend this stuff enough.  The Skin Savior balm has replaced the icky acne creams I was so dependent on (for science-y details on why, read this), as well as makeup remover, lip balm, and moisturizer for super dry skin.

So much excitement in my life right now that I feel like I have butterflies in my tummy 24/7.

  1. I was accepted to (an accelerated!) nursing school.
  2. I’ll be able to keep my job nannying while I’m in school.
  3. I’ve been volunteering in the pediatric PACU (recovery room for children after surgery) and may have found my calling there.
  4. My five year high school reunion is Friday! (WHAT?!)

Overambitious Reading!

Having surpassed my goal of reading 20 books in 2011, I went all out and set this year’s goal at 100 books.

And I’ve read one so far.

I just finished reading Jeffrey Eugenides’ newest book, The Marriage Plot.  I’m a huge fan of his writing (even though I thought The Virgin Suicides was more pretentious than actually good), but this one disappointed me.  Maybe because Madeleine’s story hit a little too close to home, but more likely because I was dissatisfied with the ending.  While that was probably the author’s aim, I felt the way he ended the book was kinda like “GOTCHA! NOTHING I FORESHADOWED WILL ACTUALLY HAPPEN.  The end.”

(That was the most shameful review of Eugenides ever written.)

Keeping with the pretentious literature, I’m reading Kafka on the Shore…and kinda hate it.

 

 

Dear favorite-beauty-mark-that-was-apparently-a-pre-cancerous mole,

You’d been with me for as long as I can remember.  When I was five, you were the “bug poop” under my arm the boy down the street made fun of me for.  When I was fourteen, you were the annoying blotch that peaked out of every bikini top I tried on.  When I was sixteen, you were the reason the first boy I ever thought I loved called me sexy.  You were my favorite little piece of myself…perfectly placed so showing you off in a dress felt flirtatious without being overtly risqué.

In college I noticed you were changing…becoming darker and appearing to split in two.  But, since you weren’t a zit or a rash, I (stupidly) ignored you on my visits to the dermatologists.  Until this fall.  Fed up with 30 second Dr.’s visits I’d wait 2 hours for, I switched doctors.  A self-professed “neurotic” Mr. New Doctor insisted on doing a full body check, given my family’s history of skin cancer.  And there you were.

Your trick was up.  With the words “uh-oh” and “pre-cancerous” it was decided you’d be “snipped off” in early January.

Since you were removed I’ve felt strangely incomplete…not to mention itchy-burny and convinced I’ve contracted MERSA.  How could you have been secretly plotting to kill me from beneath my bra?   As i signed the form to have you sent out for lab testing, I thought: yours was the worst sort of betrayal…the sort they write Lifetime movies involving infidelity and murder about.  I was Valerie Bertinelli, deeply in love with a spouse who made her feel beautiful…but had also taken a contract out on her life.

Love,

Suzi-who’s-still-kinda-mad-that-you-were-plotting-to-kill-her-but-also-misses-you-a-lot-and-hopes-she-doesn’t-have-MERSA

I Think I Have a Problem…

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When I was 9 I discovered Sailor Moon.  Not the english dubbed stuff the aired on Cartoon Network…the illegally subtitled VHS tapes they sold at the mall.  It took over my life and allowance. It was all I thought about or talked about until middle school.  Eventually I realized being “that weird Sailor Moon girl” wasn’t conducive to making friends…so I toned it down a lot.  I vowed I’d never get so obsessed with a show again…and have failed miserably.

I am completely obsessed with American Horror Story.  It’s dumb, campy, and unbelievably addictive.  Anytime the kids I take care of are napping, or The Boy leaves to go to the gym, or I have control of the remote, I end up rewatching episodes and looking for clues to “mysteries” that have so far been too obvious for me to figure out.

It’s getting to be a problem.  All I want to talk about is “IS VIOLET DEAD?!  I THINK SHE’S DEAD…BUT MAYBE ITS A TRICK AND SHE’S NOT AND…” but no one else watches it so I might as well be talking to my cat.  Which I usually am.

I live for Wednesday nights.  I get angry when the episode ends because I have to wait a whole week to find out if VIOLET IS FREAKING DEAD.

Reasons I Can’t Stop Watching this Dumb Show:

  1. Violet is pretty much me in high school.
  2. I’m a little morbid.  (My best friend and I used to hang out in a cemetery as teenagers.)
  3. Tate.  I want so badly to like the kid even though every week his character gets darker and darker.
  4. Jessica Lange is amazing.
  5. Most of the music is from artists I loved as a pretentious indie kid.  (Like Carina Round.)
  6. I WANT TO KNOW IF VIOLET IS DEAD.

Come on, even the promotional song is addictive: