Monday, October 27, 2008

Battling the Bug(s)

Man, this virus I've got -- whatever the heck it is -- has really knocked me out. Except for the fact that everytime I lie down, I'm so congested and my lungs are so cruddy that I can't breathe.

Not being able to lie down for long really makes it hard to sleep.

I've tried the recliner. I've tried the back rest and extra pillows in bed (the best solution so far).

I really suspect that I should go see my internist but it's one of those times where I haven't felt well enough for a shower (or to clean the tub so I could take a bath) for I'm-too-embarrassed-to-admit-how-many days. And my bed head is bad enough that I can't brush through it until I get it washed and conditioned (gotta love having curly hair ...) so there's no way I'm going out in public like this even if I do feel like death warmed over.

Meanwhile -- the bugs! I guess it's just the usual fall invasion of bugs trying to get out of the cold and into the warm house, but I don't think we've ever found so many spiders in one day as we did yesterday since we moved into this house in 1999. Big ones, little ones and in-between ones, they're all trying to get in and way too many are succeeding. So far it's all been spiders, except for one bug that looked like a huge spider from a distance but when Scott got close enough to squish it, he said it was really a beetle. Ewwwwww.

Makes me miss our old cat, Priss kitty, who would play with the spiders and (usually) eventually eat them. Our current cat, Gracie, is too blind to see them even if they're crawling right in front of her nose.

At least those bugs are easier to get rid of than my virus. :)

Sunday, October 26, 2008

Quick Update

I can't believe it's been over two weeks since I last posted. Apologies to those who were wondering what happened to me. It seems like it's been one thing after another.

I finally got my sleep study results (although I'm waiting for a copy of the report so I can see the details) this week after having to postpone my appointment with the neurologist for a week when one of our cars blew its head gasket and required $2300 in repairs and three days in the shop. Since my husband takes Ellie to school as well as being the sole breadwinner in our family, he clearly had priority on our only other vehicle.

Turns out I do not have a sleep apnea. I had a total of 11 episodes during the eight-hour overnight test. The neurologist says anything less than 15 episodes per hour is considered normal, and even people with 15 to 30 episodes per hour might not get put on a CPAP machine.

Although I fell asleep during four of the five 20-minute nap windows the next day, I do not have narcolepsy because I don't go straight to REM sleep when I fall asleep.

So the neurologist has, for now, diagnosed me with idiopathic hypersomnia and prescribed Provigil, which, of course, my insurance won't cover without a diagnosis of narcolepsy, sleep apnea or multiple sclerosis. So she says she will prescribe Ritilin or Adderall, which are stimulants most often prescribed for attention-deficit disorder in children. Adderall is also a popular illegal drug for college (and high school?) students because it increases their ability to focus on their studies and retain information long enough to get through an exam. They call it a smart pill, which actually sounds sort of fun to have since I feel so scatter-brained and unable to focus since I got sick.

Meanwhile, I've had a cold for going on two weeks now, which has knocked me on my butt. Ellie, my almost-4-year-old, came down with croup this week and two days later I suddenly developed a killer sore throat and wondering if I have the adult version of her virus ... it's always something at our house!

I had been scheduled for that allergy testing to the pneumonia vaccine so I could complete my testing for an immunodeficiency, but of course had to postpone it because my lungs have been junky and the immunologist won't do the allergy testing unless my asthma is completely in control. I'm hoping to get over this latest bug soon so I can get that done.

Friday, October 10, 2008

Be Careful What You Wish For ...

Nope, I haven't gotten a diagnosis.

But part of my mystery illness is that I generally run a low-grade fever. And for the past few months, I've been getting spontaneous and profuse sweating. Almost like the hot flashes I remember in the weeks and months after giving birth when my estrogen levels plunged.

I can be fine one minute, and then dripping with sweat for the next 15. All very weird, but apparently all within the range of illnesses that my doctors ponder as possible diagnoses. (And no, it's not early menopause or even peri menopause -- I got tested for that last year.)

So between my low fevers and these sweats, I've been keeping things cool in the house, including an open window in my bedroom to help keep me cool. (During my sleep study, the dayside technicians kept commenting on how cool I kept the room. I set the thermostat around 66 because whenever it got warmer, I felt overheated.)

So it finally cooled off here in Portland. And when I noticed the temperature in our family room was only 64 degrees Thursday morning, I decided to turn on the heat to nudge it up to 68 since my daughter doesn't believe in dressing appropriately for cold weather.

When it was still 65-66 degrees in midafternoon, both Scott and I made trips to the thermostat to nudge up the temp.

Scott questioned a few times why wasn't the furnace kicking on to raise the temperature, so I finally sent him down to take a look at the furnace. And he was right, there was definitely a problem. The furnace appeared to be working except for the blower, so he disconnected it and I started calling our furnace repair folks.

Of course, they couldn't come until Friday, they said.

I knew it was colder in my bedroom when I woke up than I'm used to because I was still buried in sheets and blankets and hadn't kicked them off as usual. In fact, I had them pulled as far up as I could get.

Our bathroom thermometer said it was 59 degrees in our bedroom when I woke up. Downstairs, the thermostat said 61 degrees.

Brrrrrrr! Even for me, that's too cool for comfort.

And now it's a little past 6 p.m. and the repair guy still hasn't shown up. I called at 5 p.m. and spoke to the dispatcher, who assured me I was still on the list but would not estimate a time of arrival nor tell me how far down the list I was.

And so I wait, snug under a quilt, for once actually happy to have the heat of my laptop on my lap. I can honestly say that it's finally cool enough for me, and then some!

Cross your fingers for me that someone will show up to give me heat before bedtime ...

UPDATE: So Billy -- the cutest guy ever, I'm talking hotter than Patrick Dempsey as McDreamy -- showed up around 8:15 p.m. to fix my furnace. Turns out, it wasn't the furnace anyway. It was the thermostat. Apparently, one of the pins had gotten bent, probably when batteries were changed, and that was keeping it from communicating with the furnace. Maybe. It also might have been a dirty filter that caused the motor to overheat and shut down ... or a combination of the two.

So now, at 9:30, the temp is back up to 65 degrees and maybe I won't wake up to icicles in the morning!

Friday, October 3, 2008

Sleep Study Complete; Now More Waiting

Well, I'm home from a 21-hour sleep study. Yikes.

The first part -- arrive at 8 p.m. Wednesday, get hooked up to more electrodes and other devices than I could count, and sleep from 10 p.m. until 6 a.m. Thursday as best I could -- was pretty standard, if bizarre.

My technician, Natalie, told me while she was hooking me up to all sorts of gizmos that if it was clear I had obstructive sleep apnea, they would give me a CPAP machine and I'd be able to go home soon after the 6 a.m. wakeup.

No one had mentioned that option before, and while I panicked a little about how that would mess up my ride arrangements, I was kind of hopeful that maybe it would really be that easy to get a diagnosis for a sleep disorder (if I even have one).

But when Natalie came to turn the lights on in my room at 6 a.m. and unhook me from about half my machinery, I knew I hadn't made the cut. Because if they recognized a major obstructive sleep apnea pattern, they would have woken me up during the night and hooked me up to a CPAP machine right away for the rest of the night.

So, that meant I had to stay for a "Multi Sleep Latency Test" or MSLT. Essentially, every two hours at 8 a.m., 10 a.m., noon, 2 p.m. and 4 p.m. I would get a 20-minute opportunity to sleep. If I fell asleep during that 20 minutes, I'd be given 15 minutes to sleep and then woken up.

Can I just say I hate being woken up in general, and more so when I'm exhausted and want to sleep and a sadistic person is going to force me to stay awake for two more hours? Ugh.

I think I may have fallen asleep for the first nap, and possibly the second. It's hard to say. I certainly didn't feel refreshed or rested!! I definitely got into a floaty-dozy kind of state. But I don't know if that qualified as sleep, or even how they decide whether or not I've slept during those naps.

The third nap was weird in that about a minute or two before the technician's voice came over the intercom telling me my time was up, I had this sort of "whole body spasm" thing that totally startled me. I didn't really feel like I was asleep when it happened, but more like I was getting close to sleep. I noticed that my right leg jerked a couple times earlier in that "nap" session too. I definitely don't have Restless Leg Syndrome, which is a totally different experience. It's just something that happens once in a while right as I'm on the edge of sleep but then it startles me fully awake and I have to start the going-to-sleep thing all over again. I think everyone does that sometimes. I know Scott does, and he's the proverbial healthy horse.

The fourth nap session was unremarkable. I again was in that relaxed, floaty stage that's not sleep but not fully awake either.

But the fifth nap session was pointless. Apparently the housekeeping crew came in to get ready for that evening's test subjects right around the 4 p.m. start of my nap session. Every time I relaxed, there was either a door opening (which was noisy too because of the mechanism) or slamming shut. Or I could hear someone in one of the nearby rooms moving furniture that banged into walls. Or there were loud voices chatting in the hallway outside my room. Yes, I probably could have eventually fallen asleep, but not in the 20 minute slot they gave me. What a waste of my time. I could have left at 3 p.m.-ish and avoided a very nasty rush hour and probably even been home when Ellie (and Scott) arrived home, but no. I had to sit around and wait and then lie in bed while they fiddled with my electrodes that were starting to get a little loose and then lie there for the 20 minutes, getting startled -- I'd literally jump slightly from the surprise noises -- every time I got close to relaxing. Ugh.

And speaking of that sitting around and waiting between nap sessions -- why on earth don't they provide a comfortable place to sit for those of us who have to spend an entire day there? The chair in my room was nasty uncomfortable, so in the morning they brought me an office chair that was somewhat better. But the back support was still lousy, and even though it had nothing to do with why I was there, I can't be the first or only person going through their sleep lab who has back issues! Man, by the end of the day, my back and neck were in really super bad condition despite my pain killers.

I will say the bed was surprisingly comfy. And it was nice that they weren't hospital sheets on the bed -- one of the technicians proudly told me they were ordered from Bed Bath & Beyond -- they still could have gone with a nicer quality of sheet. And had more than one pillowcase that matched the sheets. It was a double bed, so you know the sheet set came with at least two pillowcases.

Despite the fact that the person who called a few days before my appointment to remind me told me the rooms had VCRs but no DVD players, I was happy to see a combination VCR-DVD player in the room. (I'd brought along my laptop so I could watch some movies between nap sessions.) But the TV -- which they made me watch a video made by the folks who make the CPAP machines they sell, er provide, there -- was on top of a 6-foot-high cabinet, which meant I had to crane my neck for 30 minutes to watch it. And really all I got out of the video was an aching neck since I'd taken the time to educate myself about sleep apnea and CPAP machines before I got there.

(I realize not everyone would have, and not everyone has the resources I have to look things up with, but still! The video suggested that many people who come to a sleep lab have no idea why they have been sent there or what will happen there. Whose doctor wouldn't explain the test while the patient was in the office?! I even got offered a pamphlet from my neurologist when she referred me to the sleep lab.)

Anyway, it seems to me that many people who get sent to a sleep lab probably have other issues, and why the heck don't they make these places more comfy and accommodating? (The bathroom attached to my room was very accommodating -- you could roll a wheelchair right into the shower. But somehow it didn't have a shower chair for people who might have trouble standing long enough for a shower.)

So, now I wait for my follow-up appointment with the neurologist, which is Oct. 16, to get the results. (They wouldn't even tell me if their computers declared I'd slept or not during my naps!)

But first, I have to get the gunk out of my hair. I didn't have the energy for a long shower in their bathroom after the study and I was ancy enough to want to get out of there asap. But because I was going to be there for nearly 24 hours, they didn't use the usual "paste" for the electrodes in my hair. They used something longer lasting that had a name I didn't recognize (but the technicians all seemed to think it was a typical household product I should know exactly what it was), but I was told it was a product they used to use in surgeries before the development of SuperGlue. The discharge instructions I received said to use nail polish remover to help soften the bigger chunks. Yuck. I'm a little unsure what effect acetone would have on dyed hair (yes, I color over my gray and I'm proud to admit it!). Scott used some rubbing alcohol and got some of the stuff out for me last night, but I definitely still have gunk in my hair that I need to get out.

(Anyone who's been through this have any suggestions for what to use to get it all out of my hair?)

So we'll see. As I understand it, it's possible I do have sleep apnea that just wasn't severe enough for the technicians to put me on the CPAP without a doctor looking over the study data. The video I was ordered to watch there said that two-thirds of people referred to a sleep lab have to return at least once for another night. Or it's possible they'll find some other type of sleep disorder that would explain some of my extreme fatigue. Or this will have been another wild goose chase and waste of my insurance company's (and my) money. (If they just would have covered the Provigil, they wouldn't have had to pay for the sleep study!)

Anyway, the photos were taken Thursday a.m. after about half the sensors were removed. Wish I'd thought of using my laptop webcam to take a photo of the full amount of stuff they had taped or glued to me!! (Meanwhile, I have lovely red welts on my neck, chest and face thanks to the adhesive tapes they used on me. At least I didn't blister and ooze like I sometimes do within 24 hours of having adhesives on me.) (P.S. Yes, my hair is naturally curly and no, it doesn't usually look so wild, at least not when I'm in public.)