Archive for June, 2007

Confessions Part deux 2/?

Friday, June 29th, 2007

I’m back. Where was I? Oh yeah. T-30 pounds. So there I was, under 120 pounds (and that looked horrible but all the cake in the world couldn’t bring the weight back) sitting in front of a team of Sleep Doctors in-training who were trying to go with the Narcolepsy diagnosis, when this tiny man with HUGE glasses walked in and dismissed absolutely EVERYTHING.

“Obstructive Sleep Apnea” he pronounced with the most awesome was it French? accent ever. “Sleep study tonight” he said, and quickly made plans for that to happen (NOTE: It usually takes about 6 MONTHS to get into a sleep study). Who WAS this man? He reminded me so much of Edna Mode from The Incredibles. I kept expecting him to say “Milan, Dahling”. The interns obviously worshipped him, and then I found out why. This was Dr. Christian Guilleminault the founder of the Stanford Sleep Clinic. They called him CG, and scampered to make what he said happen. Before leaving the room, CG also glanced up at my nose, pushed a finger upwards against the tip and made me look like a pig. “Breathe” he said. “Deviated Septum as well.” And I’ll be if he wasn’t right. Making the piggy snout and inhaling was like pure heaven…oxygen swelled into my lungs and practically made me cough. Well I’ll be. The man was instantly our (Court was there too) hero, and my savior. And so began this journey.

I was instructed to come back almost immediately to meet with Dr. Kasey Li to be evaluated for the possibility of an MMA. The room was packed with interns trying to be one with the wall to make room for the All-Mighty CG and the Amazing Dr. Li. I expected giants, even though I’d met CG before. And in walk two little men. CG, his glasses bigger than his head, shook our hands and proudly introduced Dr. Kasey Li who also shook our hands and began to dissect me with his eyes. Actually, I think he’s seen so many cases similar to mine that one look was all it took for him to know what his job would be should I choose to accept the challenge.

Here’s where my recovery and my embarrassment come into play. Keep in mind I was 120 pounds when I met Dr. Li. Over the course of a year I was fitted with a CPAP machine. The CPAP machine helped my sleep significantly, and I definitely noticed that taking even a nap without it made the whole effort moot. My life got a little better, I poured on the poundage I’d been burning off whilst trying to breathe at night without the machine, and rounded out at my nice normal 145 (which of course I lamented because now NONE of my new clothes fit me). Court and I decided that looking like Gonzo and sounding like Darth Vader every night wasn’t the way I wanted to live the rest of my life, and we met with Dr. Li again to say “Bring it!” 6 months after my diagnosis I got braces, and 12 months later, I got surged.

Here is a big part of my problem: When you know you won’t be able to eat for a long time, you kind of feel obligated to eat more while you can. At least that was my take on it. So I porked out to a nice 150 before surgery (the day afer Christmas), and felt fine about that because I knew that whole jaws-banded-shut thing would provide some weight loss, which it did. 10 pounds went bye bye in the month after surgery (taking us to 140 in February). Baby food and Ensure was not making me happy, and AS SOON as I got the “Okay try eating soft food” word from Dr. Li, I went absolutely crazy and found out that frosting (straight from the container via my cute baby spoons) and really really soft cake (ie fresh from the oven) was a very tasty and comforting soft food. So I ate that…and gained 20 lbs.

So here I am. 160 and mortified. Had to buy size 14 pants to be able to present myself at work, and to top it all off…I was snoring a little bit (said Court). So back to The Li. And here’s what he said… (To Be Continued…)

Sorry! Gotta run. Don’t hate me. I’ll tell you next time.

Confessions of an MMA Patient Part 1/?

Friday, June 29th, 2007

I haven’t written about my recovery in a while because I have been more than slightly embarrassed about where I seem to be in terms of progress, but in hopes that what I share can help someone else, I’m going to spill…

I am big. To start, I was anywhere between 143-148 for a good number of years post college. I might dip above or below that from time to time, but I always kind of rounded out at the mid-140’s point and for the most part, my wardrobe fit me. That is no longer the case. AT ALL. At the moment I have halted my furious weight gaining and for the past month have hovered just under 160 pounds. Stop this crazy thing!

A few years ago, when I was misdiagnosed with Narcolepsy, my (then) doctor prescribed a medication ONLY available to people with Narcolepsy. It was called Xyrem. It essentially puts you in Delta sleep, the slow deep sleep that people with Narcolepsy don’t get much of. It helps to eliminate EDS (excessive daytime sleepiness) from which I suffered, and so when I began taking it, I believed it was working. I was not as tired as I had always been in the past. I was waking up in the morning and getting out of bed upon arousal, not hours later as was the norm. I had another drug called Provigil which also contributed to my waking world and seemed to help me concentrate on things that previously would have (literally) put me to sleep. Paperwork was one. Driving was another. But even with these two drugs, things were not exactly working as I’d expected.

First of all, people with untreated OSA (Obstructive Sleep Apnea) are not supposed to take sleep aids because really all those do are relax your throat muscles even more and can potentially cause more “events” (full blockage of the airway). Therefore, when I started using Xyrem, which threw me into virtual hibernation in 3 hour increments, although my “sleep” seemed better, other parts of my life were suffering. The first thing I noticed were the HUGE dark circles under my eyes. The second thing I noticed was that weight seemed to be evaporating off my body like water from hot asphalt. I was waking up absolutely DRENCHED in sweat, and my nightmares were worse than they had ever been. I mentioned the first two symptoms to my doctor (since I figured the nightmares were due to outside stressors) who replied, “You look fabulous. Wear concealer.”

Being female, vain, and any number of other things, I took her words with a kind of biggish grain of salt and powered on through 1 year of treatment, over which time I lost a couple friends to their discomfort with my sudden new hyper shaky skinny persona, and my unwillingness to admit that PERHAPS this wasn’t normal. To these people it seemed I was “on drugs”, which of course I was…just not the kind they suspected. I also lost 30 pounds. I went from a 10-12 to a 4-6.

At the beginning of my treatment, I sprained my ankle. 6 months later it was still sprained and the damage done to my bone marrow didn’t seem to be repairing. I bruised if you looked at me funny, and I was extremely clumsy and still prone to several daytime naps. I also still got very tired while driving, and if I got lost, my brain turned into a virtual bowl of jello and I couldn’t find my way anywhere without calling someone (usually Court) sitting in front of a computer to beg for directions or at least guidance and a friendly voice to 1. help me get home and 2. help me not fall asleep.

I chalked it all up to this incurable disease called Narcolepsy and probably would have died sooner than later if we hadn’t relocated to the Peninsula for Court’s work, which put me spitting distance from the Stanford Sleep Center which I decided to visit before my COBRA ran out, and ultimately saved my life.

I hate long blog posts so I’m going to walk away from the machine and try to get some shut eye. Until tomorrow…sleep well. “I’ll most likely kill you in the morning.”<—Princess Bride reference. Sorry. Couldn’t help it.

Mommy Kitty Today. Love love love love love and tears.

Sunday, June 17th, 2007

Over the past couple months, Mommy Cat has had to wear a diaper.

img_2990.jpgWhat are YOU looking at?What are YOU looking at?

Carry On NowNothing to see here

It was the only thing I could think of since she had, unbeknownst to us until it was beknownst to us, turned certain parts of the house into her secret peeing spots. Some really not so secret (like the time she got up on Court’s bed, looked at us for a while, and walked away, leaving a puddle on Court’s comforter), and it seemed it was only getting worse. I don’t think it was a behavioral thing. This is Mommy Cat; aka: Best Cat EVER. I think she just lost control. I guess that happens when you turn so old the cat/human conversion charts don’t even say how old you are because they don’t go that high.

That was my intro into my sad post du jour because Mommy has an appointment tomorrow morning at 9am with an orthopedist because she cannot walk anymore. I don’t think she’ll be coming home with us. I’ve been lying pathetically beside her all day. Her hips have been giving her problems for a while. She’s been getting arthritical (yes I know that’s not a word) and the diapers did not help with graceful feline maneuverings, but I didn’t realise how bad her hips had gotten until this morning. I went into the bathroom, prepared the diaper (infant diaper, scissors, hole in butt), and when Mommy stood up to greet me, she promptly fell over which made me laugh…in horror. You know how sometimes things are so shocking you don’t know what emotion gets first dibs? Well, she looked so freaking funny…stand up, back part flops over…and then I realised it was not that she had tripped or was stiff from sleep…she was unable to fully manipulate her back legs to the point of practical non-functionality.

Poor Court. He had grand ideas for today. Instead he’s been trying to hold me together while dealing with his own grief since he too loves Mommy Cat very much. I feel selfish but so very grateful that Court is here. I called my boss who was overwhelmingly sympathetic (and empathetic) and told me not to worry about tomorrow (work-wise) and now, while Mommy is sleeping in the last place her legs gave out (middle of living room), I write my post. Not sure if I’ll be able to write one come tomorrow. I hope she’s not in too much pain. Her breathing gets nice and smooth when she sleeps, so I’m hoping for lots of naps (which should be easy to come by, she being a cat and all). Sorry for the sorrowful post. On the completely brighter side of things, she has been around over 22 years so as far as cat lives go, she’s had a long and (I think) pretty awesome one. Mrow.

Why do they call them zzzz’s?

Thursday, June 14th, 2007

Have you ever heard someone make the sound “zzz” when sleeping?  And snoring…it’s more of a “haaaaa” said on the inhale and whatever noise happens after the tongue is sucked to the back of your throat.  Yummy.  Why the musings on snoring?  BECAUSE I STILL SNORE.  Okay I’m just frustrated and I’ll get over it.  Court has been waking me up as of late and when he’s not waking me up saying “you’re breathing funny.  You’re sleeping funny. You’re in a weird position” or “You’re snoring,” _I’M_ waking me up with a snort and a jolt and finding that every time this happens I am on my back.  My co-worker suggested constructing a strip of tacks and affixing them point down on my spine so if I roll over…well, hopefully I don’t roll over.  I think I’ll hold off on that one.

So why am, I snoring?  I think it’s my girth.  I have some poundage to lose post recovery…my favorite food to stuff into the little opening between my teeth for a long time was cake.  Yeah, that’s right. Cake.  Just add eggs, oil and milk to the stuff in the box, stir, bake and voila!  cake!  Nummy  nummy. squirrelme

So there it is, and while we’re on the topic of weirdities…why do I wake up 3-5 hours after I go to bed EVERY night?  Doesn’t matter if I take a unisom or a nothing or an ativan… up up up…and not too happy about it.  And when it comes to oh, say, 6am, I’m going to be tired and crash and when my alarm rings I am going to feel like crying.

I’ve been super sensitive to noises and smells as of late.  So much so that I kind of spazzed out at work a couple times.  How would you like to be locked in a small room with 4 other people crunching and munching on their crunchy and munchy food that crunched and munched and smelled like fish?  So I kind of bolted from that meeting to commune with the um…porcelain pots in the ladies’ room.  Next stop: satellite office located next to the gym.  I swear someone was doing havy reps and just dropping the weights down in between: Lift drop lift drop lift drop.  It sounded like someone bouncing a 500 lb basket ball.  I can usually deal with the occasional dropping of weights (I squeak and feel ill and it goes away) but this just wouldn’t stop!  Add on top of that an alarm going off somewhere in the building for 4 hours and I was like a bat with massively screwed up radar.  I was bumping into walls and going bananas.  I kind of filed a work request to get the alarm and the gym looked into, and promptly got reprimanded.  Then I got reprimanded again the next day.  And again a little later that day.  Hey, as long as the reprimand doesn’t involve me sitting next to an alarm and a weight dropping dork, I’ll take it.

I’m sleep deprived. Or something.

Last night (should be tonight since I am officially not up yet so I refuse to call this today) CJ, Court, Sydney and I  went to the Outback for a drink (or few) and appetizers.  All was fine (in the way that waiting 30 minutes for said drinks is fine) and we were having a lovely time until…someone turned on the gas fire pit.  And that gas fire pit emitted such a high pitched sound that I felt like slamming my hand on my head many times in a row to distract my brain.  Court sent me to the bathroom so I could maybe get a change of scenery but there was high pitched stuff coming through the speakers in the ladies’ so I went back outside.  Yeah.  I’m a nut.  My head hurts just thinking about it.  So I’m gunna stop thinking about it.

First post in a month and it is evident, Dr. Li did not perform the lobotomy I was hoping for.  I’m still neurotic.  But tomorrow…er…today…ugh…in a few hours I will see the good Doctor and he will tell me why I am snorting and snoring and tell me to exercise my very painful jaws more…think pleasant happy thoughts.  happy place.  happy place.