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These words are my diary screaming out loud

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?