Monday, December 20, 2010

What's This?? A Social Life or Something?

I hung out with/talked to two non-family people this weekend. Human people! o.O Woah... This may seem to some like a low-key, boring weekend if you're used to partying, or are in college. The thing is, ever since I found out what was making me sick and started having to cope with treatment and my special needs (as opposed to simply shoving through pretending to be normal), I've become more and more of a recluse. In high school I was constantly sick to my stomach and automatic-behavioring my way through everything including hanging out with my friends. Then my first year of college I found out about Celiac's. Explaining my special diet to everyone around me sucked. When you tell people who haven't heard of it before and explain the key points to them, they inevitably say one of about five completely moronic things:

1. Oh my gosh, how terrible!! D: Your life is so hard!! (Like I need to hear that from some schmuck who doesn't know me or my life at all...)
2. Did you say you can't eat meat? (Having misheard "wheat" XD)
3. I can't believe you can actually cut all that out of your diet!! I could never do that!!! (Trust me, if gluten caused you physical pain, you wouldn't have a hard time letting it go.)
4. If you eat a cookie, that means you could die??? (XD It's not an allergy like those people in the news who are killed by traces of peanuts.)
5. Oh! I know what you mean!! I have a minor allergy to -insert random food item here- and can only eat five cups of it before my scalp itches minorly!! I usually just ignore it though. :D (Oh yeah- obviously you know what a life-changing diet is like. XD)

After a couple of years of this, I just plain got tired of explaining it. So I just stopped telling people and stuck to friends who already knew and had lived with me through the changes. It didn't help that by that time, I also knew I had Narcolepsy and was on Xyrem, which has its own life changes that go with it. For those years I had to go to bed at a consistent time every night (otherwise my stomach and alertness were completely messed up the next day and sometimes the day after as well). This meant no surprise staying up, which is really tough on someone college-aged when most serious talking and socializing happens at night. It also caused generalized anxiety in me at the higher dose I was on, which, believe me, doesn't help in social situations. Those combined with culture shock after returning to America from Japan kept me completely isolated for my last year of college.

Luckily, returning to my hometown after graduation meant I had old friends who required no explaining nearby. A lower dose of Xyrem also helped me gain somewhat of a social life back, plus getting on a much-needed antidepressant for the first time in my life. I still kept to myself at art classes and in public and avoided explaining either illness as much as I could. Slowly I developed a better strategy than launching into a detailed explanation at a moment's provocation or avoiding the subject completely- instead I compromised by explaining one symptom at a time on a need-to-know basis. For example, when invited to eat with someone I would make it clear I needed to be the one to choose the restaurant or food choice. When falling asleep in class I would explain to other students that I was tired and needed a nap. So in this way as people came to know me, they came to know my needs and quirks, and slowly understood I wasn't normal.

And so nowadays I find it much easier to meet new people and talk to them. It also helps to have my girlfriend's support- I feel more protected, less exposed, in social situations. This weekend we had one of her coworkers over for lunch (we cooked, so there wasn't a problem there) and chatted for about four hours. It was great. We all had pretty good funny stories to share, and I even got to nap for half an hour in the middle without having to kick her out first. :) We also had a long, in-depth conversation on the phone with a chaplain who might officiate our wedding this summer. That was exhausting for me, because he wanted to get to know us and make sure that we really are ready to be married, and so asked pretty in-depth questions. He was really nice, though, and didn't pry for details about my illnesses. I know two new people (with one over the phone rather than in person XD) aren't most people's idea of a social life, but it was a pretty big leap for us since we just moved here and haven't had much opportunity to make local friends. So that is exciting. Maybe by the summer we'll have three friends or something, lol. 8D

Wednesday, December 15, 2010

RV Living

Want a new way to save energy? Try downsizing your floor space. :D

Before we relocated for my girlfriend's job in August, we were living at her parents' place, a lovely two story house with a pretty large upstairs that we had completely to ourselves. When I moved in, I put myself in charge of keeping the two large bedrooms, connecting bathroom, two walk-in closets, stairs and loft area clean. Being a genetic neat-freak who actually enjoys things like sweeping and dusting made this part of my life fun rather than a chore, so most of the time I didn't actually mind. That doesn't mean it wasn't a challenge however- we had two dogs and two cats upstairs with us, constantly shedding hair, plus my girlfriend who is like a tornado on the weekends. She likes to collect her things in what we refer to as "chaos piles", and anything within ten feet of one is in danger of getting sucked into the vortex, to disappear for days or weeks until I have time to go in and put things away. So while cleaning that place was fun, it wasn't easy, and sometimes it would get nasty if I was sick or busy or just plain tired for a couple of days in a row.

Then, in the span of a week, the whole situation changed. She interviewed and got an offer a week before the school year was going to start and we found ourselves scrambling, trying to find someplace to live in a state neither of us had ever even directly visited, in a small town with nothing posted online. We ended up borrowing the family RV and living at a campground for the first month while we looked for a place to rent via word of mouth. We took the dogs with us but had to leave the cats in the care of the in-laws for lack of space.

I have to admit I was skeptical of the whole RV thing at first. After all, the last experience I had had with an RV was camping on the beach with grandparents when I was little in a very cramped, old and only partially functional one (if I remember correctly, the shower didn't work at all). But this thing was pretty fancy, with a separate bedroom, a pretty nice little kitchen and comfortable furniture. And I came to appreciate the lack of space- I got so much more art and relaxing done, simply because I had hardly anything I was supposed to keep clean. Because of the close quarters I got to know my girlfriend's dog a lot better and we really developed a bond. The dogs also liked the campground because there was always so much to smell, and walks were positive challenges for both of them because of other dogs and children. I gained so much confidence walking them there. It was so easy to just go outside with only three stairs instead of a whole flight in my way.

It was pretty interesting to watch our neighbors come and go, even after just a night sometimes. I thought having so many people parked so close would be harrowing, but instead it was just fun to watch their interactions. Everyone was really relaxed for the most part- after all, they were on vacation- and just having a good time. There were a couple of boisterous weekends around Labor Day that were a bit much, but expected. Once I even saw an RV hotel. o.O I didn't even know those existed. It was like a bus and had a bus full of people inside it.

I also really liked having a ridiculously tiny kitchen. I didn't have to walk to get to anything, lol- you just reach up and there it is. And I loved the fact that we could easily open the place up- it was mostly windows- and we were practically outside. In August the weather was right up my alley, even though in September it got a tad chilly sometimes, but the RV's air conitioning and heating worked really well and quickly. Another advantage to small living spaces.

Even so, we were all getting ready for a change when the time came to move out. The weather was turning chilly and the campground was going to close for the year by the time we had arranged to rent our house. The dogs played victory fetch in our new large living room and celebrated having a yard all their own to claim. We humans were excited by the prospect of having the ability to actually fit a whole meal's worth of pots on the stove at once. A couple of months after we moved in, my in-laws came to visit and brought the cats with them, so our family was reunited. And I do like our house. Sometimes, though, I miss the RV (like when the entire house needs vacuuming XD), and I would live in one again without hesitation.

Friday, December 10, 2010

Because You Asked...

Now I think it's time that I give y'all an update on my health, since (you know) that's the purpose of this blog, lol :P. And a lot has changed since my long hiatus began.

So, before we moved in August (or, indeed, even knew we would be moving so soon), I went to a new doctor on the outskirts of Chicago. I picked her, for the most part, because she is female and I have a long history of older, male doctors who I've had pretty serious communication issues with. That stipulation didn't give me a lot of neurologists within two hours to choose from, and she was the only one who seemed to have Narcolepsy on her resume. Indeed, she did seem to listen to me and understood my need to get off of Xyrem. She was a little skeptical that I would be alright without trying stimulants, but agreed I should get off of Xyrem first and see how it went. So she told me I could just stop taking it, and that it would wear off pretty fast, which seemed a little contradictory to what I've heard. We agreed I should stay on Remeron because of my family and personal history of depression and the fact that it should aid my sleep as well.

So I left the appointment pretty happy with what I'd learned, but not terribly attached to this particular neurologist. Which is probably good, now that I live a day's drive from there anyway.

I got off of Xyrem several days after the appointment, and I was really glad that I did. Even now that I'm not really sleeping I don't regret it. My stomach was instantly doing a happy victory dance. I could immediately eat breakfast again, not having to wait until the nausea wore off late in the morning before putting anything in there. I could eat anything (gluten-free/soy-free) that I wanted, whenever I wanted. I could feel hunger again before getting really fuzzy headed or dizzy. In short it is awesome. I can eat again!!!!!!

In two months I went from ten pounds underweight (with my hip bones prominent and ribs visible) to having a little bit of a tummy and the proper curves. I went from a size 2 to a size 6. It's not the numbers that I care about so much though- it's the fact that I feel healthy again. My body feels like it actually has some substance to it. I feel like I'm the right weight now, and it's been years since I felt this good physically. I have to be careful, now, though- I don't want to keep on climbing until it's unhealthy, and that takes some work on my part because increased appetite is a side effect of Remeron that I definitely feel. I'm careful to control how much I eat at once and I limit how much snacking I'm allowed to do between meals. I actually usually just eat one large meal a day because with our healthy, vegetable-rich diet, more than that is too much. I eat a small breakfast, a large lunch, and a snack for dinner. I'm finding that this works really well for me and my girlfriend, too.

So, that's the good news. The bad news is that I'm not sleeping- as you might expect. I used to write down my dreams, but now I have too many to bother. The other day I jerked awake, full of terror at 2 AM, because I heard an excruciatingly loud and frightened scream right next to my ear. I haven't had much in the way of sleep paralysis, which is good if mysterious. Mostly it's just been the dreams. I've had tornado dreams, dog training dreams, beautiful scenery dreams, Harry Potter meets Stargate Atlantis dreams, car crash dreams, even a dream in which I was bicycling along a partially submerged wall through a field of swimming pools. It goes on and on and I wake up to find that it's still 3 something. I go back under, and then it's maybe 4 something. Eventually at like 7 I give up, which has me ready for bed the next night at about 8. I've mostly been sleeping in long naps on the couch in the mid-afternoon with my cat asleep on my stomach, and I'm pretty sure that's the only reason I'm (more or less) conscious the rest of the time.

When we had just moved I was walking the dogs at least once during the day while my fiancee is teaching, and sometimes twice, but as I've been steadily going down in energy level I might be able to do it once if I'm lucky. I'm also pretty frustrated at the fact that I have so much art I want to do but it happens slowly and in short stretches if at all. This is even more maddening because we're so low on money and there isn't anything I can do to contribute directly. The real world is just too demanding for me to keep up. We're doing fine because we have two sets of parents helping us in various ways. It should be better next year when my girlfriend is working full time at the school rather than the current part time (we have reason to hope), but for now we run out of our own funds before the month is out and have no way of saving up for the future. It's hard for me to watch that knowing that I can't earn any extra; I can barely take care of the chores that I enjoy doing and keep the place reasonably clean. I know that my most important job is taking care of the family (two cats, two dogs and the girl) and that even on my worst days I'm a huge help in that regard. I try to remember that and to know that I'm contributing a lot just by existing (our especially needy cat thinks so, too).

But I have to say my symptoms aren't as bad as they used to be in high school before I was diagnosed. I think the Remeron is definitely part of it, but also it's the lack of stress in my life now- the lack of unreasonable expectations. I do what I physically can and for once, it's enough. In fact, it's appreciated greatly by everybody. And to be honest I'm not in any hurry to try adding other meds. My stomach has in some way rejected everything else I've tried, including other antidepressants, Nuvigil, Provigil, and Ritalin. And I like my new-found ability to eat food, thank you very much. :D

Thursday, December 9, 2010

Welcome to the Middle of Nowhere, USA

I may have said when we were living in Wisconsin that we were living in the middle of nowhere. At the time, compared to my hometown of Houston, I was right. There were several sizable towns nearby, but my inlaws' house was in the middle of farm fields on a big slab of land. In Houston, going around the block was the shortest walk I would take with my dog, while in Wisconsin it meant my girlfriend taking the dogs out for hardcore exercise (a distance of over 3 miles, which would take nearly two hours for them to walk). It took quite a bit of driving to get to any form of civilization and there were days when you might see ten cars on the way. In Houston there's traffic getting out of the driveway, and I could walk to three separate shopping centers if I had the energy.

That was all before we moved to Iowa. No offense meant to the state or its people, but it seriously must be one of the least populated states. This place defines "the middle of nowhere". Some things about this are awesome. For example, there are way more small businesses here, run by families rather than huge faceless corporations (with Walmart as the main exception). The local pharmacy isn't a chain store, the grocery store is employee owned, and there are lots of cool little thrift, antique and gift shops around, including a little coop. There's also a cool little main street, like many small Midwestern towns have, with the old architecture and so forth. The downside is that there's a lot you can't get within two hours of here (the nearest city is about that far away). Our big dog is allergic to most grains, and there is literally no grain-free dog food being sold within a hundred miles; we have to order it online. Now that it's winter, there are fewer than ten vegetables at the grocery store, and most of them are usually sad-looking. We're lucky if we can find three that are fresh every time we go and we're starting to get tired of the same ones. Whole Foods? What's Whole Foods?? This also means no sushi for me; I doubt the people here have even tried sushi, and they're all blindingly white anyway, so not exactly about to start a sushi restaurant.

That's another thing; I thought Wisconsin had a lack of racial diversity. My girl had her kids (the high schoolers she's teaching English for) make video projects about themselves at the beginning of the year, and I watched them with her to help her grade them. Seriously, these kids all look the same. They all have exactly the same skin tone and their hair comes in two colors. o.O I was getting them all confused within five minutes. But having grown up in a city where whites are the minority number-wise, it doesn't surprise me that it's difficult to understand such a white town. There's exactly one Asian girl, and she's half. My girlfriend is also finding this a little bit trying at times. She's been teaching To Kill A Mockingbird, and the kids are mostly ignorant about racism and are sometimes actually racist. Most of them have never even met a black person. Luckily we're white ourselves so it isn't something that gets directly in our way.

Though I'm sure we're causing enough chatter among the townsfolk anyway, being lesbians. Like all small towns, everyone knows everyone else, and there seems to be a pretty conservative undercurrent. My girlfriend hears about it more working at the school. She hasn't come out to her kids (though her co-workers do know about us) so they don't hide their homophobic comments around her. Two of the other teachers are also a lesbian couple, though they're older than us, and the kids make all sorts of comments about them. Naturally, she tries to educate them about tolerance, but it's pretty clear that their parents are just as close-minded and are passing it all on to their kids. Fortunately, the principal and several of the other teachers are openly supportive of us and really nice about it, and our sexuality hasn't compromised her job in any way (her boss has said that he hopes she'll stay on next year, and be with them for a long time).

For the most part, we've met a lot of really nice people here. One thing I like about it is that there's a thriving art community. The landscape itself is beautiful no matter the time of year, so it's not surprising that so many painters and ceramicists live in the area. We've gone on several weekend outings to studios and seen some really terrific work, including teapots, stained glass and several varieties of landscape paintings. I've made a couple of friends, and even gotten a drawing lesson from a local painter. It's awesome talking to people who have the same passion as you do for something and can look at your work with fresh eyes.

Right now it's a classic winter landscape outside with the snow building itself up. I'm having a lot less trouble adjusting to the cold weather this year because my body was allowed to adjust gradually throughout the fall. This place is beautiful, and we enjoy having our own place, and getting some income that isn't from parents, though we are still relying on them, too. We have a neat little house that is (more or less) functioning now (that's another story), we have our cats with us and our dogs, we have each other.

Friday, December 3, 2010

How Many Narcoleptics Does It Take To Do Interior Decorating?

Hi again! It's been ages, I know. But before I launch into The Life Summary Of Stuff, I feel like I should explain the title.

You'd think I learned from the whole lightbulb experience, but what can we say. My girlfriend (now fiancee) and I have a rented house now, and me being my artistic self, I always want it to look interestingly decorated. Her being her, she gets tired of having the furniture the same all the time and has tons of fun finding new ways to rearrange everything as often as possible, which then gets me rearranging everything on the walls to match.

Most of the time I manage just fine with tacks: I have unframed paintings on canvases that can just sit on them, and lots of dreamcatchers that tacks are perfect for. But every so often I do have something more complicated than that.

And so, I find myself precariously perched on a stool and an armchair, swaying dangerously, trying to hold up a framed drawing to the wall to see where I should put in the nail. Of course it's the kind of frame that has a little notch in the middle of the back that you are expected to (somehow) fit over a nail in exactly the right way so that the thing doesn't fall off on you. I figure out where I need to put in the nail, which I have ready in an attempt to only have to get up on the stool once (a somewhat dangerous operation in which I have to arrange feet and weight properly), so I go ahead and put it in. Now somewhat tired from holding up a hammer over my head, I sit that down and get the frame. I hold it over my head, which is difficult because it's heavy, and attempt to peer into the space between it and the wall in order to carefully slide the slot over it, which is pretty hard without depth perception- I can't tell where anything is unless it's right in line with the angle I'm looking at it. I try this about ten separate times, only to have the frame slide off each time. By now my arm hurts. Then it occurs to me that I probably nailed the nail in too far so it doesn't catch on the frame like it's supposed to, so I pull it out more and keep trying. Several minutes later I realize the nail itself is too small- it isn't going to stick out far enough. So I get down (now exhausted and sore) and go get a bigger nail.

This time it works as soon as I get the nail in, fortunately, because it's all I can do to hold up the hammer and the painting each one more time. Sometimes I can be pretty silly about wanting to finish something in one sitting...

So the answer is, one Narcoleptic, but you'd think she'd learn to take a nap in the middle.

Well, a lot has happened since I was here last. My girlfriend got hired for a part-time high school teaching post in middle of nowhere, Iowa. She drove out on a Thursday (it was seven hours away), got interviewed on Friday, was given the offer at the interview, which she accepted, then drove back that afternoon, knowing she was starting a week later. And then insanity ensued, eventually ending up with us here the day before she was to start inservice days, in a borrowed RV with our two dogs, living at a campground until we could locate someplace to rent.

Several months later, it's all settled down, just like the snow, which is currently blanketing everything and looking spectacular. Part of my reason for leaving this blog was that I ran out of stories for the time, but now I have a whole bunch lined up again. So I'm not going to spoil them all in one post. :D I'm doing fine, though, better in some ways then others. Overall life is good.

Stay tuned... XD