Tuesday, July 31, 2012

My new revelation

I have noticed before that there is a certain thing about each bus driver that I like and don't like. My newest favorite obsession? Bus drivers that honk. That honk at everyone. It seriously makes me laugh so hard and makes me really like them a lot more. They honk at cars who are in the bus lane... Cars blocking intersections... Pedestrians jay walking... and sometimes birds that are in their lane. Some days you go a whole day of commuting without hearing a single honk. Somedays you hear one honk at every intersection. And while I think it annoys most people, especially those getting honked at, I just can't get enough. I think I like it mainly because bus drivers are in charge. They own the roads, so people really listen and some of these bus drivers can be pretty scary when they want to be. So I love seeing the looks on the faces of the idiots who block the roadway and how much more scared they get each inch closer the driver gets to their impatient car.

As I'm writing this post today, I am standing. Yes, standing the bus ride from Tacoma to Seattle. Why? Because when I arrived to get on my usual bus leaving at 6:40, there were at least 3 bus loads of people ahead of me. Sometimes this means they're running late, sometimes there is a bus down, and sometimes it's just because everyone and their mother decided to take MY bus this morning. I would have had to waited for the 4th bus to come, but I pulled the old trick of running up at the last second to sneak on and stand. In the beginning of my bussing, at least one man would offer their seat to me, but I always said no, because it was my own fault
I wasn't here on time to actually get a seat, so I'm not going to take theirs, but thank you. But now nobody offers their seat to me anymore. It makes me wonder if the grumpy commuter morning face has rubbed off on me and they don't think it's worthy of giving up a seat. This happened last week as well, and I was dying to sit down. I am running a half marathon in less than 2 weeks and I am NOT in the condition I need to be in, or want to be in. So the night before I stood the bus ride last week, I had run 7 awful miles and was a wee bit sore the next morning. So my already shaky tired legs were becoming more and more tired and shaky as the drive went further north. I tried to squat down to relieve some pain, but that just made it hurt worse. If standing hurt, of course wall sits on the bus were going to hurt, too.

Since my narcolepsy post I have had a lot of interesting responses from a lot of people. People who have had sleeping problems for years who haven't figured out what it really is that is wrong with them, some who have tried a ton of different things and still don't see the light at the end of the tunnel, and some who have finally found the right combination of things to get them a good night of sleep. I've had a lot of people tell me that they don't think I have narcolepsy, and all of the sudden everyone I know is a sleep specialist. Trust me, I didn't think I had it either. But having the sleep study doctors diagnose it, pass it along to my sleep doctor who confirmed it, passed it along to me (surprised), and now after doing my own research, I believe it. So many people have said "Oh, I didn't realize you were tired during the day, that's what it says narcolepsy is." Well, when you have a restless night and wake up 3,4,5 times a night, are you tired the next day? Yes! I have been exhausted... For a long time and just thought it was from frequently waking up every night, all night. But as my doctor explained, I plummet into REM sleep, which is the dreaming sleep, where your brain tends to actually be MORE active then, than during the day when you are awake. I'm not sure why, but everyone seems to think REM sleep is the gold sleep, but non-rem sleep is the good sleep that re-boots your brain and body every night. It takes most people on average 90 minutes to get into REM sleep, and they drop down for periods of 10-20 minutes, then back up to Non-REM sleep. Where I was in REM sleep within the first few minutes of falling asleep and stayed in that for longer periods of time. So, since I'm not getting that re-boot every night and my brain is super active all night, my brain is overworked and tired the next day.

There are 4 main characteristics of narcolepsy and it's less than 20% of people who have all 4. Out of the four, have two. One being the almost immediate fall into the REM sleep, Which causes the excessive daytime sleepiness. And two being hallucinating dreams. Now this isn't something I've written about on here, but have told plenty of people stories over the years. I have always walked and talked in my sleep. Am I doing it now? Not sure since I don't have my family telling me the next day how I tried to pull the stereo off the top shelf of my dresser (yes, I did that.) Or sleep walking into my brothers room when we were in high school and when he asked what I was doing, I told him I was sleeping. My last big sleep walking episode was about 2 Christmases ago (that I know of) when I was out at a friends cabin and yes we were drinking, but I went to bed on an air mattress with my friend, and woke up at the bottom of an air mattress between a MARRIED couple I had just met the day before. Embarrassing? Yes, so I snuck back across the room and slept on the floor like it was no big deal. Surely no one would know what I did. But the next morning I heard them saying "I think Leslie or Carolyn slept walked and got in our bed last night." I was MORTIFIED!

Back to the hallucinations. This doesn't happen everyday, or even every week or month, but every couple of months. But I have woken up standing up in my room searching for things. When this happens I have the hardest time differentiating real life with my dreams. So I have to literally talk and walk myself out of it and realize I'm at my house and it's whatever ungodly time in the morning and what I'm "looking for," isn't here. These can be scary and sometimes funny. This may be TMi, but I've also gone to bed in a T-shirt and shorts and woken up in a sports bra and had no idea when I did it. I've also had scarier times where I've thought there was someone in my room or outside my room and been awake, but having such a vivid dream, I've thought it was actually going on.

So that part I hadn't shared with you all, mainly cause it makes me sound absolutely insane and I didn't think they were going to diagnose me with narcolepsy, but that is one big characteristic of narcolepsy.

Turns out, they are finding out more about narcolepsy and have linked it to a deficiency of a certain protein in the brain, which is why they prescribed the stimulant. The stimulant should hopefully activate those sleepy proteins and get my brain more awake during the day, so it can shut off at night.

I started the stimulant Saturday and am supposed to take 1 pill every morning for a week, 2 pills every morning for a week, 3 pills every morning for a week, and 4 pills every morning for a week. Obviously If I feel it working before 4, I can just stick with 1, 2, or 3 every morning. So far I don't feel any different, but will surely keep Y'all posted! :)

Sincerely,

The Narc who loves honking busses

Wednesday, July 25, 2012

What we've all been waiting for...

So I spoke with my sleep doctor this afternoon for about 20 minutes. I was expecting to NOT find anything out and everyone kept saying don't be so negative. But really... I was being positive, because if I didn't find out anything, then I wouldn't be disappointed. Is it weird that I was so anxious because I wanted to be diagnosed with something? I just wanted to be reassured that I wasn't actually going crazy and I am actually tired all the time. Not that people don't believe me, but because its been going on so long, it's become normal. And not sleeping isn't normal.

The doctor explained they didn't find anything at the night time study, and that I actually slept really well that night, which I documented the next day on my papers. I was embarrassed because honestly... Who sleeps well while getting tests done because they don't sleep well? This girl!

So, the daytime study was a nap every 2 hours for 20 minutes. He said I was clearly very tired because I fell asleep for every nap and actually was able to leave early because I fell asleep every nap. And I fell asleep on average in the FIRST 4 minutes of the nap. I also dreamt during every nap, which many people don't ever get to that state, while I got to it within 20 minutes, for every nap.

He said that according to my results I have narcolepsy. He described the treatment plan for me and said they don't treat narcolepsy, they treat the tiredness you get from narcolepsy. So instead of being prescribed a sleeping aid or something I would be addicted to (like a lot of sleeping aids), he said I can take the prescription whenever I want (mainly in the morning)(I will check on this with the pharmacist).

The medicine is to stimulate the natural chemicals in my brain that make me feel awake. So this prescription does the opposite of what you'd think a person with a sleep disorder would want. This WAKES me up, instead of making me sleep. The theory is if I'm more awake during the day, I will be more tired at night. Because since I dream all night and wake up all night, I don't get good sleep. So this should make me SO awake that I'll be SO tired at night.

I am not scared, overwhelmed, or nervous or anything about the diagnosis. If anything, I am relieved they actually figured it out and I'm not crazy! :)

I pick up my prescription tomorrow, so we shall see how it goes!

So until then... Sweet dreams!

Xoxo

Monday, July 16, 2012

You Know What They Say....

I can come up with about a million different words of advice or sayings that start with "You know what they say...." But who are "they?"

"You know what they say about men with big feet... big socks!" I get that... but how about men with big feet having big you know what's? Whoever "they," are must have slept with a lot of big foot men to know that it must be true!

Whenever people ask if I'm single and I say yes, the most common thing I hear is "Well, you know what they say... it happens when you least expect it!" Well, "they," must not know I haven't been expecting it for a long time!

It's like if you put "You know what they say," in front of anything, it must be words to live by, it must be valid and it MUST be credible.

I think I'm going to start throwing it out before saying something completely backwards just to see if anyone doubts it. Or asking them who "they," are when they give you the famous first line.

Sorry for not explaining in my sleep study update that I don't know the results right away. I've had a few people ask what the results were. And they told me at my consult that I wouldn't know until 2 weeks AFTER the study was completed. I called today to make my follow up appointment and it turns out it's over the phone. This is a good AND bad thing. Good, because I don't have to miss MORE work. Bad, because do you remember me telling you how I couldn't understand ANYTHING the doctor said? Well, that was face to face... so I'm assuming the German accent will be even more difficult to understand over the phone.

I just have this gut feeling that they wont find ANYTHING wrong with me, so then they will want to put me on the medication he mentioned at my consult appointment. I hadn't really thought much about it because I hate taking medicine, so why would I take it? But if they don't find anything out... what do I do, just not sleep? Or take the medicine? So I started doing some research on the medicine and what is the first line I read? It's given to treat epilepsy! I mean seriously why is this guy convinced I have epilepsy?? But it goes on to explain that lower doses are given to people with a variety of health problems and sleep disorders. Anyway, it's still a lot to consider. But on the plus side, I am almost done taking my vitamin D perscription. I have been taking it for the last 10 weeks because I was wayyyyy below the normal levels. The standard range is 30-80 and mine was a whopping 18. The perscription they gave me is 50,000 units, while most over the counter doses are 5,000 units. I will be going in to get my levels checked in about 2 weeks once I finish the perscription. Also, I have been sleeping a LITTLE bit better than normal, so I am wondering if my vitamin d deficiency had been part of the problem with my sleeping?

Anyway, I will find out soon enough and you know what they say.... good things come to those who wait!

Wednesday, July 11, 2012

Another update:Two naps down and I'm bored

Okay, I'm REALLY bored. It's supposed to be 80 degrees today and I have the day off!

I've taken two test-naps so far today and actually fell asleep for both! I'm pretty shocked. But it wasn't a deep sleep, just one of those where you're kind of asleep, but kind of not, but enough in a sleep that you dream.

Speaking of dreams... this is the real reason I am being annoying and posting two blog posts before 10:30 AM...

The night before the sleep study, I had a dream it was canceled because one of the workers got hurt or sick, I can't remember. I woke up yesterday frantic because I thought it was canceled.

The tech last night kept asking me if I had any good stories or jokes to tell him. He was actually annoying me quite a bit with his jokes and stories, so I told him mine about my dream. He brushed it off and said, "Oh, actually we are down a tech tonight, it's just me, our other tech for tonight threw his back out." I was thinking WHAT!!! I had a premonition, but he just went on to tell me his jokes and stories.

This morning, a new tech came on shift, who is very sweet and not nearly as awkward or uncomfortable as the guy from last night, who by the way, told me about his other jobs and how they pay much more than the one here. Uhh... you do realize there is a camera and intercom in here?Anyway, after each nap, the tech asks me if I had any dreams. I have had dreams for both naps. The first one, my whole family was in the room with me and all I remember is that I snapped at them and said "You do realize I'm supposed to be napping right now, right?"

When she asked me about dreaming or not, I decided I'd try my premonition on her. She literally stopped in her tracks and looked at me with wide eyes. I explained to her that I mentioned it to the tech last night, and she said yeah, well he threw his back out and we actually did have to cancel someone's sleep study for last night! She said, "Well, he has been taking vicodin, so maybe his thoughts were drifting and you picked them up."

Boo-ya... I may be a bad sleeper, but apparently I can tell the future.

I'm hoping for another nap around noon, lunch, and then leaving.

We'll have to see what they say.

The Overnight Study: Quick Update

I survived the overnight study! It wasn't nearly as bad as I imagined. I actually feel like I slept better than normal. The tech asked how I slept and what made me feel like I slept better. Well, when I actually sleep decently, I wake up feeling sore in my chest because I wasn't up moving around. Normally I am up 3-4-5 times a night. But last night I was unable to get up and move around because I was hooked up to a bunch of things. And if I had to go to the bathroom, he had to come in and unhook me, then hook me back up. So, I held it.

My room is big and nice, looks a lot like a hospital room, but with a bigger bed. I changed into my pjs right when I got here and then got hooked up to the electrodes. The tech had me try on the sleep apnea machine for what he said would be 15 minutes. About 35 minutes later, he came back in to remove it. He had me try it on because if I met a certain criteria during the night, they would put the mask on me. Let me just tell you, I felt like a drowning elephant wearing this thing. My eyes were watering and the air it blows through your nose literally made me feel like I was swimming under water... Especially since I hardly ever breathe through my nose.

Anyway, there is a camera set up above the bed so he could watch me sleep... CREEPY! I had to go to bed around 9 PM and after he left the room he got on over the intercom and had me do a series of tests. The tests were: blinking 5 times, looking right to left-left to right, moving each foot and hand, etc.

He came in throughout the night to re-wire me I think because I was moving around and they came loose. He also, at one point switched out the tubes that went up my nose an re-taped it to my face. I realized at these moments that I would not make a very good patient, as I hated being vulnerable and having some stranger come in the middle of the night to switch out my equipment for me and give me directions on what I'm supposed to be doing or not doing.

It's now 5:30 AM, I was woken up at 5 to do the series of tests again before he unhooked some of the equipment. He removed the tubes in my nose, the electrodes off my arms and legs, which by the way were glued to my skin, which hurt like a you-know-what when he ripped them off. Thankfully I had shaved legs, but now I feel like I got my arms waxed. I am waiting for the morning crew to come on to let me know if in fact I do have to stay for the day-time test. If they find an issue with you overnight, you get to go home because they know what's wrong. And if they don't know what's wrong, they will keep you. The tech said he doesn't imagine them sending me home this morning.

Today, if I stay, will be a series of naps every 2 hours. I asked what if I can't nap? Being a terrible sleeper, I'm not a napper, which may seem odd because if I was that tired I should nap. But I have never been a napper, I just have too much to do than waste my time napping! He said they aren't looking for if I actually nap, but if I do, how quickly I go into a deep sleep/rem etc.

Here are a few pictures to make you get a better idea of how beautiful this set up is :)

Monday, July 9, 2012

'Twas The Night Before The Sleep Study...

When all through the house, Not a creature was stirring... oh wait, Leslie is.

I have mentioned this several times before, but I have to say it again. Everytime the bus rides go smoothly, I think of something to write about in my blog... then that SAME day, something bizarre happens on the bus.

Let me start by saying, my original post was going to be about tomorrow, THE BIG DAY!!! My sleep study! I know I wont sleep well the night of the sleep study, who would? But I also have a feeling I wont be able to sleep tonight either. I have no idea what to expect tomorrow, but what I keep imagining is something like a looney bin. I imagine myself sitting in a room all alone and in white pajamas, hooked up to a ton of machines. I do get to bring my own pajamas and pillow. But what do you wear to a sleep study? They said it needs to be seperates, a top and bottom... DUH! What do you think I'm going to wear? A negligee?? Clearly I'll be wearing a top and bottom... people will be watching me sleep for God's sake!! I will be checking in at 7:30 PM tomorrow and don't really know at what point do they make me go to bed, but I have a feeling I will be bored. As for the next day, I will be by myself all day in that white padded room I'm imagining. I will be packing my pillow, pajamas, books, my laptop, and my camera. I may get so bored I will start live-blogging, so forgive me now.

Now that I've dragged you through my worries about tomorrow, I will get to the crazy bus story.

I hop on the first of two busses home and it's pretty packed. I squeezed in the last spot at the front of the bus, A. because it was open and B. I saw this guy toward the back who hits on me repeatedly on the bus. All of the sudden this woman starts talking and wont shut up. I started watching at her and realized there is something not quite right with her...

I glanced over and saw a woman stand up and move away from the crazy woman. I was thinking this poor woman was probably extremely annoyed of the crazy yapping her ear off. Then she yells "Excuse me bus drive we have a problem back here." And she started saying some man was making threats to the women on the bus. I got uncomfortable thinking she's lost her marbles, until I heard him telling her to be quite and the woman moved from her seat because she wanted to. The bus driver stopped the bus and walked to the back and said to the man "You need to get off the bus or I will call the sherriff." And the man said "Hey man I only have about 10 more stops, let me stay on." The bus driver repeated himself and the threatening man walked up to the crazy woman and flinched at her like he was going to hit her. It was at that moment I realized he really was crazy and making threats. I glared at him as he was walking off the bus, and he looked me right in the eye and said "I'll rip your head off, and I'm coming after you man you better watch your back."

I assumed the threats he was making were sexual, but he was actually making harmful physical threats to this poor woman. She was bright red and obviously embarassed and uncomfortable. The crazy woman who got the man kicked off the bus was quite the individual... so much so, that I had to sneak a picture of her so I can show all of you.

Here she is!