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These words are my diary screaming out loud

Tuesday, April 01, 2014

Sleepy =/= lazy.

I had a revelation this weekend. It's sort of a follow up to the post the other day about finding the IH website and Facebook group, and sort of as a result of the move (which, thank dear sweet 8 pound baby Jesus, is just about over, other than getting some stuff to my parents house).

(Yes, I am actually posting about the same topic two posts in a row. Crazy, right?)

For my entire adult life, I have called myself and allowed myself to be called lazy. I don't work out enough because I'm lazy. I sleep extra on the weekends because I'm lazy. I'm not a good housekeeper (for my own house) because I'm lazy. I'm perfectly happy in a desk job because I'm lazy. I want to go to bed at 9 on a Friday night instead of going out because I'm lazy.

It has taken the facebook group and the website and seeing that not only am I not alone, but that I don't even have it as bad as many people with IH to realize that it's not necessarily that I'm lazy, it's that I'm sleepy, and that it's not just in my head. Who knows if I would be lazy without the IH. Maybe I would. But I kinda feel like I wouldn't be. I like going to the gym (as long as its not running. I hate running.), I like going out, I like coming home from work and doing more than plopping onto the couch counting the hours til bedtime. I am a master at powering through physical pain, and slightly less masterful but still effective most of the time at powering through the sleepiness. Take this weekend, finishing the move. Especially yesterday, which was finishing getting the last few things out of the house and cleaning the whole place.

I am not lazy. I am sleepy. There is a difference. I am not making it up. I am not just trying to get out of things. Well, 99% of the time I'm not just trying to get out of things. I don't secretly hate hanging out with you. I really DO want to do all of those things. But my body is telling me it wants sleep more. And the validation that I've gotten over the last few days that this is normal and that, in fact, I'm better off than a lot of people with IH, is AMAZING.

Most of the time I absolutely would like to tell my body to go fly a kite, as my mother says. Sometimes I can. Quite often I just can't. But please believe me when I say I wish I could.

Friday, March 28, 2014

I am not alone

I've mentioned once or twice before on this blog that I have a sleep disorder. I was diagnosed not long after I got out of the Navy with idiopathic hypersomnia. Most folks have never heard of it - I had never heard of it before I was diagnosed. At the time, my sleep doctor said that he originally wanted to diagnose narcolepsy, but I'm missing a clinical requirement for that diagnosis so idiopathic hypersomnia it would be. So for the past 5 years, I've basically just told everyone I'm borderline narcoleptic. Made it easier for most people to understand - everyone's heard of narcolepsy. Of course, most people believe narcolepsy means constantly falling asleep. Again, I did too. In reality, that's just a symptom. But that's neither here nor there.

When I was first diagnosed the doctor wanted to prescribe a specific drug, but I wasn't comfortable with some of the side effects. I'm in a different place now, so I was ready to talk to my doctor about making the change. In doing my research, I discovered that my crap "insurance" would make that drug $500 A MONTH for the GENERIC, so obviously I'm sticking with my current meds for now. But also in my research, I found a website called Living With Hypersomnia AND a Facebook support page for people with IH and similar disorders. Overwhelmed, relieved... I can't even put words.

Funny thing is, I KNOW how important support groups and things like that are. I have a sister with juvenile onset rheumatoid arthritis. The first time she went to a conference and met other kids like her, even at age 6 she was moved. But I haven't been to a sleep doctor since 2009, and it never even occurred to me to look for something like that for IH. But in the past 2 days, reading other people's stories that sound so similar to mine, and being able to compare some notes, and just be able to vent a little bit and have people understand.

Because that's the thing. People close to me know I have a problem. It manifests itself in several ways, but two of the biggest are excessive daytime sleepiness and the ability to sleep seemingly well for 8+ hours and still not feel refreshed. I am ALWAYS tired. The end. I have to take medication every day to maintain some level of alertness and not fall asleep at my desk. I don't care if I got 10 hours of sleep, it's how it is. Waking up is hard, especially if I'm being awoken and not waking on my own. Yet I still get asked how I can be tired when I slept for 9 hours the night before, or why don't I just take a little nap? I tell them I take Ritalin and they ask if I have ADD. They think I'm joking when I say I have to take pills to stay awake.

But on these forums, and on this Facebook page, THEY GET IT. And it is probably one of the best feelings I've felt in a long time. I have learned more in the last 2 days than I did in the entire last 5 years since I was diagnosed. I almost want to cry, in the best possible way. I can tell my whole story and not have people get bored or not get it or try to make excuses for my exhaustion. There is really and truly something to be said for a support group, even if it is on Facebook.

With all of the stuff going on in my world right now, this has been a little ray of light. It's also helped me not be really angry over the medication thing - I've seen a ton of people say that it didn't work that well for them anyway, or it worked for a little while then stopped, or that the side effects really were unbearable. Just needed to share :)

Tuesday, March 18, 2014

When life hands you lemons, or something

So, I know, its been a little quiet in these parts. Sorry for that! 2014 has been a bit busy already.

With the New Year, I started looking for jobs in Florida. Husband and I have been talking about getting back down south basically since we moved up here 4 years ago - this was never meant to be a permanent solution. I was ready to start hunting after Christmas last year, but my boss resigned, and I was not going to leave the client in a lurch like that. So we figured after Christmas would give us enough time to start the search, and we'd just stay in the house we're renting month to month until something works out. Well, the best laid plans... in late January, when I emailed the landlord about something else entirely, she told us that she wanted to sell the house, and would not be extending our lease. I replied with the situation we were in, and asked if she'd be willing to let us stay and put off putting the house on the market until jobs were sorted out. She declined, saying she had some work to do on the house and wanted it on the market by 1 May.

Well, crap.

That throws a wrench in things, doesn't it. I upped my searching, even got a couple of hits on my resume, but so far, nothing. Our lease is up on March 31st, so we signed a lease on an apartment down the street. Not ideal - it's going to cost us a pretty penny to break that lease if a job comes up. So starting today, we move our stuff from the townhouse to a two bedroom apartment and my parents' basement. I'm taking a temporary break from job hunting, because frankly, right now I have enough stress to deal with, and I'll pick it back up again soon. We're still hoping to get to Florida - all of his family (which is a generation older than mine) is down there. That and cost of living is so much lower than here, and we'd like to have kids in the near future, which will be hard up here.

I will say, though, living in this house and dealing with this landlord, who is self-managing, has really made me more conscious of decisions that I make for my own house. I understand the need to get rid of a house - I want nothing more in the world than to be able to sell mine. But I will pick compassion for my renters and a guaranteed income to offset the mortgage every time, at least for now. Oh well - we'll deal with it and keep on trucking. What else can you do?

But at least we had The Rock Boat to offset some of the stress! I'm pretty sure that of the seven I've done, this year was the best yet. And considering how awesome the one that topped my list before, that's a pretty big deal. It was also our honeymoon, which was didn't hurt. But the lineup was amazing, the weather was pretty much perfect, everything about it was just fantastic. I think I'll save the recap for another post - gives me a reason to write again!

How's your 2014 going so far?

Friday, January 31, 2014

New Music! (Not mine. Yet.) (Well, a very teeny bit mine)

I've blogged many times about my good friend Amy Gerhartz and her awesome music. Well, she just put out a new Acoustic album (aptly titled Acoustic), and it's AWESOME. And yes, there's a tiny bit of bias in there because she's a friend, and also because I helped her write the song Too Young :)

You can check it out here on Amazon MP3 and here on iTunes.

I'm super proud of Amy and all of the hard work she put into this album. Most of these songs were inspired by The Rock Boat, either the trip itself or ideas Rock Boaters suggested to her for songs. I highly suggest you all check it out!

Thursday, January 30, 2014

OK Polar Vortex, You Can Leave Now.

If you live anywhere in the Eastern half of the United States, or Texas, or the Midwest, or the upper plains, or just about anywhere except California and South Florida, it seems, you can relate to my sentiment. I've had about enough of this.

This morning when I left for work my phone told me it was 7 degrees outside. Fahrenheit. And you know what? It actually felt WARMER than yesterday or the day before, because there was no wind!! Not that I wasn't still wearing sweatpants over my tights with my skirt in my purse, my ridiculous looking poofy down ski jacket with hood up over my hat, scarf around my face, and flaps buttoned over my chin, Ugg boots (I don't even want to hear it, those things are WARM), and gloves. Because you bet your happy ass I was. And then there's the part where I had to walk to the bus on the street because the sidewalk on the public road in my neighborhood is a sheet of ice.

And then there's the part where I don't get warm. It takes me hours to thaw out. And when your living room is in a basement, that just makes it worse. Combine that with the fact that our house does not heat evenly (thanks, builders, for putting the thermostat in the coldest part of the house) so while the rest of our house is freezing, the bedrooms upstairs are a sauna. Not super comfy.

But the good news is, it looks like we get a warm up starting tomorrow. HOORAY!! It's going to be in the 40s!! Kinda makes me want to pull out the picnic gear and lawn chairs! OK, not really. But the husband is going stir crazy, so I'm hoping at least the rivers thaw enough for him to go fishing. And I'd really like to get those Christmas snowflake light things down from the front of the house, but it's either been raining, too cold, too icy, or some combination of the three every weekend, and it definitely takes the two of us with the step ladder to do it.

And people ask why we want to move South... here's hoping February warms up a little bit. If not, 23 days until the Rock Boat...

Monday, January 13, 2014

What's my point again?

I've had the strangest dreams the past few nights. Among the ones that I remember include one where I was back in high school, although it wasn't really my high school, and I was getting picked on by the head cheerleader, although it wasn't the real head cheerleader from my senior year because she was super cool. (I'm not sure why I assume I was a senior in this dream - or maybe its just because that one head cheerleader is the only one I remember.) Anyway, I did something I never did when I felt picked on in high school in this dream - I stood up for myself. I became that girl who did not give a flying f***, I got back in their faces, and I wasn't a pushover. Everything that, these days, I wish I had done back then. Of course, in my dream, that just made it worse, tons of other people started getting on me, and when I tried to stand up and say that they could harass the new girl all they wanted (I was not new when I was a senior, but whatever), they just drowned me out with their taunting. Then suddenly I was on the Rock Boat, and one of the a capella groups from my USNA days was there along with the men's glee club, and I was mad because my small group wasn't there, among other things, and this dream got even stranger. 

The point is, I woke up troubled. We're always told that when you get picked on you should stand up for yourself. I've spent a lot of time thinking about some situations that I dealt with as far back as elementary school - the mean girl writing a note signed from the boy I liked telling me he liked me too and laughing when I realized it was from her, the girl in my 8th grade civics class who liked to regularly accuse me of copying her / being a poser when I ended up with the same brand of powder or style of shoe, the girls in my 2nd high school who made fun of me for coming to school in jeans, tshirts, and flip flops when they were all made up in tight jeans and heels. What if I had told them all, to use an expression my mother would approve of more, to go fly a kite? Would it have made it better? Or would it have made it worse? Honestly, it doesn't really matter, because everything in my life, the way it all happened, brought me to where I am now and the person that I am today. I'm still a little shy about conflict. (That's about the only thing I'm shy about, to be honest, even though when I take those personality tests I tend to come out more on the introverted side.) I'm no longer afraid to stand up for myself, though, even if its in a more passive way than getting back in someone's face.

I'm not sure why this dream bothered me as much as it did. Bothered isn't even really the right word, maybe just stuck with me. I'm not sure why it stuck with me so much. Maybe because it felt so real. I don't know. All I know is I'm glad I'm not in high school anymore. While people still suck, and always will, I'd rather deal with them as an adult, in my own way, comfortable in my own skin and understanding that life is too short to deal with other people's drama and BS.

I shared a similar thought process (the life's too short to deal with other people's BS part) with my college aged sister recently, and the way she handled it ended up teaching me a bit of a lesson. She was having issues with her roommate and suitemates basically being the type of girls she spent high school avoiding, and it was getting to a breaking point. I told her not to let them walk over her She called a meeting with their RA to discuss some things, and basically made it clear in her own way during the meeting that while she had a perfect opportunity to get them in trouble for a variety of things, she wasn't going to do it - she said just enough to address the issues without actually getting them in trouble. And funny thing, the passive confrontation worked - things were great with them for the rest of the semester. They even decorated her room for her birthday! I wish I had things figured out the way she does when I was her age.

So yeah, I think the point of this post is that life is too short for other people's garbage and drama. It took me until my mid-20's to really learn the value of deleting people from my life. Do I still wonder about some of them? Sure. But is my life much easier without most of them? You bet it is. How does this tie back to the dream? I don't think it does, but I'm OK with that. What good is a blog if it can't be a bit rambly sometimes!

Tuesday, December 31, 2013

And there we have it.

See ya later 2013, don't let the door hit you in the ass on your way out. I mean, you weren't all bad - I did get married this year, after all. So that's AWESOME. I got promoted, which was cool. And the Rock Boat is always an absolutely fantastic vacation, no changes there.

There was also some drama, mostly from folks who need things to always be about them. Unfortunately, sometimes the only way to handle those people is to just remove them from your life. But that doesn't make it hurt any less, or make the actions any less angering. So there were a few less people on the Christmas card list this year (theoretically, because we didn't really do that well on Christmas cards this year), and while we're still feeling the effects of why, we'll be OK.

There was plenty more that is just plain forgettable about 2013. As in, I'm sure there was other cool and not so cool stuff that happened this year, I just can't really think of it off of the top of my head. The wedding automatically takes this year into the better category, but take that out of the picture and 2013 was really just a resounding meh.

The past few years I've posted my goals for the New Year and how I did the year before. This year, I'm not. Because really, my main goal for 2014 is to live in the present, and leave the past where it belongs. Well, most of the time at least - saying that's the plan for 100% of the time is just not realistic. But most of the time. Much more doable.

So here's to a better-than-meh 2014, one in which the past does not govern us and the dramatics do not overtake our lives or govern our emotions. Here's to trying new things, meeting new people, going new places, and improving our lives instead of dwelling on things that happened before and cannot be changed. Here's to controlling our reactions to people, not letting their actions control us. Here's to a year of life, love, good music, good friends, and maybe even a change or two.

365/365 (12/31)

I made it! It's been an interesting adventure, finding a picture for every single day this year. Now maybe I can use the blog for writing a little more, who knows :)

To close out the year, here's one more shot from my FAVORITE day of this year.

 And with that, Project365 COMPLETE!

364/365 (12/30)


This is what happens if I get out of bed for even just a minute in the morning.