On Remeron for a Reason

I don't think I've written a whole lot about Remeron (my anti-depressant) on here. The thing goes somewhat unappreciated, maybe because there isn't anything to complain about. It doesn't give me any side effects so I mostly stopped noticing it was there. Or, maybe, my memory is simply bad enough that I've forgotten I'm on any meds anymore. But every time I manage to run out of it, I realize just how much help it is.

A neurologist several years ago put me on it because I was both depressed (had been for years) and needed extra help getting to sleep (as you all understand). I tried the generic first and it worked awesome. I felt like a new person. I was suddenly able to have hope for the future again and became usefully optimistic. I figured out how to smile. But then the side effects started- my muscles started to hurt. At first I thought I'd just pulled something, until I noticed it was happening to a bunch of muscles and would rotate around and change which ones it affected for no apparent reason. I tried staying on it but by the end of a month I was in constant pain. I felt so good otherwise that my doctor put me on the brand name instead and, just like we were hoping, it worked- no muscle pain, but all the good effects were still there.

When I got off of Xyrem a year ago, I stayed on Remeron, and I was glad I did. I didn't know how glad until the first time I ran out. I switched from the mail order system to picking it up from pharmacies because we kept moving, and with my memory you can imagine what would happen literally every month. I would get down to five tablets and start thinking I should refill it. I'd remember every night since I take it before bed, but forget by the morning. I wouldn't write myself a note until I was down to two, then finally make it to a pharmacy in the middle of nowhere, where they would have the generic or nothing at all and have to order it, and this would always happen to fall on a Friday somehow, so then I would have to wait until Monday and not take it for one or two nights.

The first time this happened, I was expecting to feel depressed. Instead, sleeping just got ten times harder. My dreams got more persistent, intense and disturbing. I did notice a drop in my mood but I was more concerned about the lack of sleep. On a good day I'm petty discombobulated, but without Remeron I get even more out of it and confused.

You would think, with such a big difference, I would learn after the first few times, but no. I keep running out. I think I've remembered twice out of the last ten or so times. I finally (now that we're settled again) switched it back to mail order, three months at a time, so it will no longer be up to my extremely efficient brain. But not in time to avoid it happening again this past weekend, of course. The first night I didn't have any, I just stayed up. My husband and I drank lots of caffeine, ate tons of cookies (Uqi's chocolate chip!!) and watched Stargate Atlantis. Between that and playing cards we managed to stay awake until around 2AM. My ploy sort of worked that night. I got up around 8 or 9 as usual so that I mostly skipped the dreaming phase that gets so much worse without Remeron.

I was feeling pretty smug (though more sleep deprived than usual) when I went to pick up my Remeron yesterday, until they told me that it hadn't come in and they couldn't get it until today. Feeling exasperated with myself for getting in this situation to begin with, I didn't try anything fancy last night, just got in bed and really wished that I hadn't.

I was looking at star charts like in Stargate SG-1 (which we started rewatching yesterday) when somebody came in with some fried chicken in a plastic bag and told me I was supposed to deliver it to this Buddhist monk. Apparently she lived at the top of this really steep hill even though we were supposedly in my extremely flat hometown. Actually it was more like a small mountain, with these crazy round boulders making it up. So I'm really hungry, climbing this weird mountain, sort of light-headed and trying to determine if a) the chicken is gluten-free and b) if it's okay to eat somebody else's lunch. I poke at the chicken and it seems GF so I try a piece. It's not tasty but it isn't poisonous either, so I keep eating it. I get up to this temple on this mountain and deliver the chicken and this monk lady is asking me all these really philosophical questions about stuff. I'm mostly just confused but sort of happy because the stuff she's talking about is interesting, but in the course of that I forget to deliver the chicken and just keep eating it. Then she sends me on my way and I'm wandering around my aunt's house seeing everything she's recently remodeled. Then a bunch of my cousins are there and we're taking my great aunt to see a newly flooded area of the city. It was clearly a highway before, but now the ocean is there, and a couple of highway bridges are acting like piers. We walk out on them, talking, and I'm telling them the whole city is going to be flooded soon.

So, this dream's not too bad, you're probably thinking. Well, then I feel pain in my mouth on the inside of my bottom lip. I get all annoyed thinking it's probably just something I accidentally bit as I was eating all the GF fried chicken. It's bleeding a lot and the blood tastes metallic like blood does. I start trying to find somewhere to spit it out because it tastes disgusting. It starts welling up more and more and gets all over my hands as I try to hold it inside my mouth. I find a dirty sink in an art class and spit the blood out into it, but it keeps coming and the texture turns really globby and clotted. The texture disgusts me even more and I just keep spitting it out, hoping it will stop. It tastes horrible and I feel nauseous.

It slows down a little, thankfully, but it tastes worse and worse, almost like rotting. In the sink, blood is mixed with old acrylic paint that many students have washed off of brushes. It makes a horrible, bloodstained rainbow.

Needless to say, I got up right away and went for the caffeine. I'm never under-appreciating my antidepressant again (until, you know, I forget about this whole thing in the next five minutes).

Life Explosion

Well, life is settling back down again finally. We were able to borrow J's family's RV for this last month he's working at the high school here, and finally got moved into it and out of the hotel. The entire saga had us moving us and our pets no less than seven times in and out of hotels, our broken rental house (which our landlord kept trying to get fixed) and finally into the RV just a few days ago. Our stuff from the house is packed in boxes ready to be moved back to Wisconsin, where we're going to flee as soon as school ends and J is done teaching.

The RV, while crammed full of stuff and animals, at least doesn't smell like sewage and affect my sensitive immune system. It is also less area to keep clean than the house, though the one thing that was nice about the hotel was the fact that I didn't need to clean anything. This was a good thing because I've been completely flattened from exhaustion. Between the stress, parents poking us constantly and needing to keep everyone updated, the lack of fresh food (thank God for GF frozen dinners or I would have been even more screwed), long hours in the car and keeping everyone healthy and safe through the upheaval, it must have been the longest three weeks in existence. Various things forced me to do too much (like my fiance getting really sick for two days, during which I had to take care of him and even drive to Walmart once) and then it would take even longer than it normally would for me to recover.

In the middle of all of this, we had planned months earlier to go visit J's parents over Easter weekend seven hours away in Wisconsin. My parents were even flying up from Texas, as we wanted our parents to get to know each other better (they had only met once at graduation). The afternoon we were going to leave, we found out that the sewage situation was still not fixed when someone came to disinfect the drained basement and discovered new flooding. So we left, hoping to bring the RV back with us after the weekend was over.

Despite us being exhausted and feeling down on life, the visit with our parents went well and I was relieved at how relaxed my parents were. We had good long talks and caught up, my parents got to meet the horses and our big dog, who they had only seen pictures of before, and reunite with my dachshund, who they adore. We drove them around to show them the area and had dinner a couple of times. It was really good.

I don't know if I mentioned it yet, but my fiance got called in to talk to his boss, the principal, a couple of weeks ago in the middle of all this mess, to find out that he's not getting hired back next year. The principal said a few pretty critical things that had my fiance's confidence in his teaching pretty well shot through for awhile. The most aggravating part is that most of the man's argument is based on something one of the administrators messed up and blamed on J. What really got my fiance, though, was the word "unprofessional". He has to be female for work, but gets paralyzed by anxiety and depression if he dresses too female, so he has to go pretty androgynous and we suspect that's part of the principal's problem. The only thing is that J hasn't come out at work and doesn't plan to, and we have no proof of actual discrimination based on J not looking "female enough". It's just a vague suspicion that I have. At any rate, we just want to get out of that town. After the house problems, all the drama at the school and feeling like we can't go out without seeing lots of people who know J as female, we really just wanted to leave anyway.

For the summer we already had plans to return to J's parents' house to help his mom with taking care of the horses and to allow his parents to go on vacation. We've applied all over the country for English teacher positions, but we know we may not get anything for this next year. If we don't, it'll be a long stay with my in-laws again. I would love that except that the stairs there make my life extremely difficult. Honestly, we aren't sure what to do in J's career next. I hear a lot of transpeople have to switch careers in order to get free of their past life as the wrong gender, and in a career as conservative as public school teaching we aren't sure transitioning would be well-accepted. My man is very sensitive about how people think of him and I worry for him. We've been thinking about how to get his birth certificate changed, but that won't fix his reference letters (which refer to him as female), his social security number, or his college transcripts, which are all things schools look at when considering you. Also, the fact that we don't know what state we're going to be in doesn't help us come up with a clear plan of action as every state seems to have a different process for something as seemingly simple as changing your name. It's very bewildering and we aren't sure where to go from here.

Another thing that has us wondering is whether or not I'm going to have health insurance next year after my 26th birthday, when my dad's company stops being willing to cover me. We had thought, as we are getting married in July and assumed we would be in Iowa next year, that I could be on J's insurance which would at least help. But, if we move to any state where gay marriage isn't recognized or at least converted to a civil union (like Illinois), we aren't married anymore and I potentially lose the ability to have health insurance through my spouse. I've finally decided to try to get on disability because we need the income (my parents are still buying all of our food) as well as insurance, but that can take years and multiple rejections. Transitioning to a straight couple might turn out to be faster.

The good news is that (I think) I should have a pretty strong case. I've never been able to work even part-time, and my mom found a form that allows me to really go into detail about what is difficult for me. As soon as I finish it, I'm going to post it here, as I think it's useful for anyone researching narcolepsy, looking for something to relate to, or for anyone to fill out to use with their application. I started it wondering if I'm really "disabled", but by halfway through I realized that was silly. Hopefully, I can convince the government of this fact.

It's too gorgeous a day to not live in an RV. The first truly warm day we've had in awhile, with the sun shining, and despite everything I'm thankful to be here. I'm thankful to be anywhere.

Somehow Surviving a Week of Total Insanity

Too tired to write... in... sentences...

1) Moved out of house to escape sewage leak and into a Super 8
2) Accomplished above at 10 PM with four animals
3) And with tons of GF frozen food and leftovers
4) Which ran out after 3 days and required me to eat steadily stranger things and rely almost entirely on a loaf of GF bread and lunchmeat from Walmart
5) Checked house every day to drop off laundry and were subjected to the horrible smell increasing until the cleanup people got there finally
6) Watched my fiance come down with horrible flu-like withdrawal symptoms from getting off of his anti-depressant too quickly
7) Nursed fiance back to health over three days while taking care of 4 animals in a hotel, one of which is a dachshund having serious back problems that require extra work
8) Drove to Walmart for emergency supplies and to the house for similar
9) Accomplished the above without crashing into anything despite sleep attacks and being exhausted, not having driven at all in months
10) Moved everyone and everything back into the still slightly off-smelling house to get away from the hotel
11) Had disappointing therapy appointment over the phone
12) Did three loads of laundry and washed giant pile of dishes (using water boiled on the stove because the water heater is still off)
13) Hoping we don't have to move out again while they bleach the basement
14) Called Mom to vent about above and started crying because it's just that insane
15) Now only awake because of blasting Britney Spears

Bring On the Ice Cream

Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.

So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...

For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.

Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.

Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.

So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?

So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.

I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.

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

My (ex-)Neurologist Is a Jerkface

So, like I said, I got an appointment with a new neurologist for August. My girlfriend, being awesome and helpful, agreed to call my old neurologist's office and tell them, plus find out how we could get my records- we agreed we want our own copy in addition to giving them to the new doctor. So several weeks ago, she did this for me. The receptionist was helpful and wrote it all in my file, but told us that I would have to come in person to pick up the records, which I was halfway expecting. We asked if my mom could come in and get them (since she is, you know, in the right state and we aren't), and we were told that she couldn't since I'm over 18. Several weeks later we were going to fly down to get my car and more of my stuff and to visit anyway, so we figured we could come get the records then.

So the several weeks passed. Then, the night before we were leaving to fly down, I find a message on my phone saying that I need to schedule an appointment with him. I was like, no way in hell, thank you very much. I have good reasons to be moving on. When I told my mom about it she got really annoyed. Apparently family members can pick up medical records if they have a signed note, and she volunteered so I wouldn't have to go to his office again. We were also angry because it seemed that he wasn't going to renew my prescriptions, which I just needed for one more month before my appointment with the new doctor. But once it became clear that I wasn't going to come in to be bullied by him again, he approved my prescriptions after all. Which is a good thing because most of the point in going to the new neurologist is to get off of Xyrem safely. Doctors... can't live with 'em...

Meanwhile, we had a good but exhausting visit to my hometown, and then a very long drive back up here. We've mostly recovered and I'm feeling much more moved in. :) I'm hitting new lows in energy level, but what's new. I just hope the neurologist I'm seeing in August is an improvement over the last one. (Not hard to do.)

No More Nuvigil

I had planned to keep taking a half pill of Nuvigil every morning until I was running out of samples, and then report to my doctor. Well, that's been my plan three times now, and I keep running into stomach problems and stopping it after a few days. Last time it was nausea that got me. To be fair, it might have gone away after awhile. I know the headaches and the drugged wonkiness would have, so it wasn't those that I was worried about. It was just that after three days I had absolutey no appetite and literally couldn't stomach eating anything.

This time I wasn't nauseated, but the lack of appetite was still there. It came on faster than last time, and I've had stomach cramps, especially at night. Besides that, yesterday was pretty crazy- I was either so awake I was restless and antsy or so sleepy I couldn't keep my eyes open, and the two states would transition pretty suddenly. I'm guessing that would probably have settled out over time though. The past two nights have been similarly nuts- I'd find myself suddenly awake in some random part of the night, then get pulled straight into vivid dreams again, maybe sleep soundly for awhile and then be wide awake for a minute or two again. Which also may have settled out eventually. But it's the lack of appetite that convinced me that Nuvigil isn't a good idea for my stomach. I spent over a year with no appetite on a higher dose of Xyrem and I refuse to deal with that long term again. I have no urge to be back under a hundred pounds because I hate all food and have to force myself to eat. Not healthy.

I'm not sure what my doctor is going to say about this. He keeps suggesting meds to help keep me awake, which of course I need, but every time something gives me a side effect and I stop taking it he gets a little frustrated. He wants me to try things for long enough to make sure the side effect won't go away, or that it won't be worth dealing with to have the benefits of the medication. Which is perfectly reasonable. But I'm kind of through putting the experiment ahead of my present well-being, if that makes sense. In other words, I suppose I would rather feel okay now than go through a lot of feeling crappy in order to feel slightly better- or maybe just the same or worse- later. Who knows, maybe it's just a phase. Or maybe it's my own way of growing up.

Dreams and Drugs

Yeah, I've been officially neglecting my blog again, which is fine because I'm actually pretty busy and very happy at the moment. Plus I have plenty of new things to talk about when I do find the time.

My Narcolepsy has pretty much been the same as when I left my parents' house to come live with my girlfriend. Having someone next to me while I'm sleeping has been extremely comforting for me, but besides that I'm still dreaming a lot- like, constantly and very vividly. I had an interesting and kind of fun one last week in which I was this velociraptor who was staying in a motel, lol. It was a perfectly ordinary motel room, and apparently I was this really nice and gentlemanly male velociraptor who had been hired as a kind of guard by the guy who ran the motel. I was wandering around, waiting because I knew of a couple of younger and much less polite velociraptors who were going to come try to eat people who were staying there. I was warning people and encouraging them to stay inside until I had chased off the intruders. I was a little nervous, but did my best to reassure people. They were pretty nice to me and I managed to win them over with my good manners, hahaha. So eventually the other velociraptors showed up, and I totally scared them off really easily and then wondered why I had been so nervous.

Then, yesterday maybe, I woke up from this really weird dream in which I had been watching a series of bad tv movies, lol. Of course I was halfway watching them and complaining about how bad the script was and halfway actually in them, wandering around or being the main character. The last movie is the one I really remember- it started with a teenager with a backpack, wandering towards a city following this ditch along a highway. And then it cut to this really bizarre place where I was wandering. It was a tunnel that was partially underwater, and the walls were made of totem poles that were carved and painted as faces with red, white and black paint. The faces were moving and contorting on their own, and I knew that they were all actually my own people just pretending to be totem poles and that I could turn into one and blend in if I wanted to. Then I saw the teenage boy with the backpack coming towards me, where there was a bench. He was flailing and waving his arms and muttering and it kind of scared me, so I leaned into a blank spot in the wall and turned into a totem pole so he wouldn't see me. He sat down on the bench, still muttering and looking crazy, until a couple of people who I knew were from an enemy tribe came and persuaded him to leave with them. I got worried because I figured that wouldn't be a good thing, so as soon as they left I jumped out of the wall and ran to find help. And then I woke up.

Besides dreaming a lot, I've been pretty sleepy. As usual. So I decided I'd better try Nuvigil again now that I'm basically settled in here for awhile. I took half a pill this morning, and I have been more awake. I've also been a little wonky and my stomach isn't thrilled, but it hasn't completely revolted yet. And I have a minor headache again, which is pretty much the same as a couple weeks ago when I tried it. I think I have enough to take the half pill for more than a week, and then I'll know more and can call my doctor and report. We'll see how it goes this time. In the mean time I'm going to continue to enjoy life.

Hitting Pause

Well, I know I said I was going to keep taking Nuvigil, but I couldn't bring myself to take it yesterday morning. For one thing, I was so nauseated that I wasn't sure it would stay down. For another, I'd been having steadily worsening stomach cramps since I started it and therefore no appetite, which is not something I enjoy. But let's face it, it was the cookies that were the last straw. It was my birthday and my mom had made cookies for me (gluten and soy-free, of course, but still quite tasty), and I knew I would have no urge to eat even one if I took Nuvigil. And so I didn't, and sure enough I was getting hungry again by the middle of the day. I got to eat two cookies and so I think it was worth it.

That's not to say that I'm giving up on Nuvigil just yet. Someone left me a very helpful comment on my last entry, saying that at least two of the problems it was causing me went away for her after awhile. Which is very encouraging. I was definitely beginning to feel sleepy again even a couple of hours after not taking Nuvigil, and it's a strange thing: you don't realize how easy life is without the constant urge to sleep until it is gone, but then it's so easy to take for granted.

So I'm going to take my samples with me tomorrow and most likely try again soon. Just not on my birthday, or before having to get up early to travel.

Nuvigil Adventures Again

On Monday I went back to my neurologist, which I had been putting off. I wanted a break from having my medications tweaked this way and that, added and subtracted, and the resulting side effects. So I scheduled my appointment for as late as I could while still making it before my next move across the country, this time to be with my girlfriend. My doctor didn't particularly appreciate that, which I really can't blame him for. I come in doing the worst I have in the last year and a half, to announce that I'm leaving and no, can't come back in two weeks for him to mess with my medications some more. He's a good guy and it's obviously frustrating when he can't help me as much as he wants to.

I talked to him about my growing anxiety problem, and he said we could try a different antidepressant instead of Remeron, which isn't really designed to control anxiety, but that would come later. After the appointment I felt really dumb- or rather, really amused with myself, because the anxiety went away as soon as I walked out of there. Apparently I was anxious about the appointment, and thinking of it as an OMG Anxiety Problem!! just made it worse. This happens to me just infrequently enough that I forget to watch for it, lol. I'm going to keep an eye on it, but I suspect I'll have less issues once the move is complete and my quality of life is improved just by being with my girlfriend.

I also talked to my doctor about how exhausted I've been and the fact that I haven't been sleeping very well. I mean, my standards are pretty low, but dreaming for half the night with all this disturbing crap is really a bit much. We talked about Nuvigil again, and I decided to try a different sample pack instead of the one that gave me a gluten reaction. So I got that. He said we could try Adderal if I react to Nuvigil again, but he can't prescribe it across state lines so it would have to wait until the summer. And you know, that's fine with me.

So I started the Nuvigil again yesterday. So far the results are mixed. I had more energy yesterday and I didn't have a gluten reaction. I had a bad headache for awhile- not surprising as that's the main side effect people tend to have. It made me a little bit wonky. Like, I was kind of spaced out in a drugged sort of way. This is also something I tend to do when starting a new medication, so it's not a big deal. It might go away if I give it a chance. I was hopeful by the time I went to sleep.

Last night I was nauseated every time I took Xyrem, but it didn't keep me up. I slept very deeply for most of the night and only dreamed (comparatively) a little in the last third of the night.

I had moved into this dorm/office- complete with both desks and bunkbeds- and I was unsure as to how I'd ended up there in the first place. I had gone to visit someone there, maybe, and had somehow ended up working there and getting my own bunk. I didn't mind so much; it was an interesting place and the other people there were also students at the art institute. Our group's job was to work on this magazine. Everyone was really nice and it seemed fun, but it took me awhile to figure out what I was supposed to be doing. There were clues everywhere, right in front of my face, but I can be pretty slow sometimes. The magazine was called Freism, complete with this fancy logo, and I have no idea what it was about exactly. There were seven people assigned to work on it each year, and I had been hired because the seventh person had stopped showing up. There was a heirarchy, which I eventually figured out because it was posted on the wall, with the rankings as chess pieces. My job was to draw anything they needed for the magazine. I don't think any of us were getting paid, or else it just wasn't important. It seemed to be a volunteer position. The office was pretty cool. The bunkbeds were brightly colored like they were for kids, and there was art everywhere, hanging on walls and piled on the desks, which were arranged near each other so we could socialize while working. It was all very laid back and I didn't do much of anything other than chat with people and make up a new story. The story was about an angel and one of my characters that usually represents me falling in love with him. I don't really remember it now, except that I had wings too. I was telling the people in the office about it while we sat next to the giant wall of windows on one side that looked out on this huge and awesome oak tree. And after that, the second in command guy wanted me to draw something to show what I could do. All I had was this gigantic black marker and he wanted me to draw a machine that would convert moon rocks into gold coins, so I did. It wasn't too bad even though I kept messing up, lol.

I woke up really nauseated. It was after ten before I braved breakfast, which turned out okay because I needed to take my dog to the vet to get a health certificate for our flight and his appointment was at lunchtime. I took Nuvigil again after breakfast. The nausea went away but now my stomach is unhappy. I'm also still feeling really spaced out. I'm a little bit suspicious because it could be brain fog, which is a symptom of a gluten reaction, but I can't be sure yet. Luckily everything is pretty much arranged for our flight, so the ability to think isn't too important for a few days. So basically I'm still on the fence on this one. I need to see what happens tomorrow. If there is a tiny amount of gluten I'll start to react more and more if I keep taking it, so I'll know about it pretty soon. If not I'll have to see if the spaciness goes away, and decide about the headaches. We'll see.

Who the Heck Knows

So tomorrow will be interesting. I'm going back to my neurologist after a couple of months of lack of communication. I'm not sure that he'll be happy to hear about how I'm doing at this point. Mainly I have even less energy than the last time I talked to him, but over the past month I've also been getting steadily more anxious and even a little depressed again. This makes me annoyed (and will probably also annoy my doctor) because I haven't changed anything. Okay, so I tried raising the Xyrem by the smallest possible increment briefly about a month ago when I was desperate for a couple of nights of sleep, but it didn't work- the side effects came back and I lowered it right back down to where it's been for probably the last six months. My Remeron is the same. I never experimented with Ritalin again (like he wanted me to) because it made me depressed that one day I tried it and I don't mess around with depression. My life has improved drastically since the last time I saw him now that I'm not stressed out trying to take four hour classes all the time, plus of course no longer being single and lonely helps. But I'm still more exhausted than ever, dreaming more than I had since I started Xyrem and on top of that have mood issues coming back for no apparent reason. Story of my life.

I'm not sure what he'll want my to do this time, if anything, because I've tried most things at this point. I suppose I could try harder at the stimulants. We'll see. It's just frustrating to be the bearer of bad news.

Professional Porch Napping

This morning I actually slept okay for the first time in awhile. I had a cool dream in which I was travelling around inside a vast dormlike place via subway trains and buses, hanging out with two of my close high school friends. It occasionally made itself frustrating, but for the most part was a good dream. And after that I actually slept as far as I could tell when I woke up later than usual, feeling somewhat refreshed (or at least less run over than the rest of the week).

So I figured, since we were going to have a substitute in my class today and therefore it would most likely be shorter than usual, that today wouldn't be so bad. Maybe I could get away with two naps instead of like five, and by the time 7 PM came around I wouldn't be ready to keel over and give up on that staying awake nonsense.

Well, driving to class actually wasn't that hard for once, as I felt like I could pay attention without having to focus every ounce of brainpower on it. Class was fine for about the first half hour, and sleeping during the twenty minute break did help, though I got weird looks from my classmates again. But by the end of the three hour class I was pretty dead. Driving home was difficult and when I had finally pulled up safely into our driveway I just sat in my car for a few minutes, summoning the energy to open the door and get out.

I decided it would be a good idea to let my dog out into the yard for a few minutes and then take a good solid nap. My body decided, however, that that wasn't going to be soon enough. And I ended up falling asleep sitting on the front porch. It was at least ten minutes of nap and it was definitely not planned. I was aware for most of it, so it's not like I was completely out, but that was my first accidental nap in awhile. Though I still think it's kind of funny (add that to my entertaining list of strange places I've taken a nap) it really just highlights the trend I've been experiencing lately. The not so great for any future plans I might have trend.

At this point I'm starting to doubt everything I had thought about before- about how animation is really something that would suit me as a career. It's not that I don't like it or that I'm not good at it, but it requires energy. Which I don't have. And I really don't know what to do about this as my lack of energy seems to be getting alarmingly worse. My doctor is out of medications to add at this point, after the Ritalin made me depressed, and I'm pretty sure he's as frustrated as I am with the situation. We can't increase the Xyrem either; we tried and my side effects came back, and besides that my stomach can't really handle it anyway.

So right now I'm in a pretty angsty state of mind. I keep having to cut back on my daily activities in order to avoid completely flattening myself for days at a time, but every time I think I'm done cutting stuff out of my life I end up having to cancel more. I'm sick to death of being in this house, but leaving it takes more energy than I have to spare most of the time. I keep trying to decide what to do with my life, but everything I want to do takes more energy than I have, so I find myself stuck without plans at all. I just don't know what I'm going to do.

And That Would Be a No

I took Ritalin this morning, and at first it seemed like it was going to work. I was more awake, but then I got really really tired. As in worse than the usual Narcolepsy thing. I've been on the couch all day, dead tired, a little depressed and completely lacking motivation to try to do anything. I was excited about doing my photography homework this morning, but now I'm pretty sure it's not going to happen today, which is bad because if it rains tomorrow I could end up with hardly anything to turn in.

Mainly I'm just really frustrated. I planned carefully this week just in case something like this happened so I could still get by anyway, but it still sucks when the experiment doesn't work out, the small amount of hope you had allowed to build up gets dashed and you're back to square one. I'm definitely not taking this tomorrow, and I'll probably just call my doctor on Monday and see if he'll prescribe a different one. Then Thursday can be another experiment. I wonder if any of them will end up working out.

Oh well. Back to the endless napping.

Even More Drugs!!

I haven't been sleeping very well for about a week now. I had three or four mornings in a row where I woke up paralyzed after almost-nightmares, which had not been happening more than once every month or two before. After going back to sleep it's been whacky dreams and then I wake up early, feeling exhausted. Yesterday morning I was feeling okay- I actually slept some after my third dose- but by the afternoon I was more exhausted than I've been since the failed Nuvigil experiment. And this morning I'm way out of it and zoning out.

So I called my doctor. He wants me to try Adderal or Ritalin as a last resort of sorts since I'm really struggling to stay awake at this point, even though they could make me lose weight- which would be a very bad thing for me. But we've both decided that it's worth a try at this point since I can't take Nuvigil. I'm having a really hard time keeping up with my classes, which don't even have that much work.

So it's more drugs for me. I wanted to go pick whichever one he gives me up at the local pharmacy, but apparently you either have to pick them up from the sleep center or have them mailed to your house. I decided I'd rather wait a couple days for it to arrive here than drive for half an hour to pick it up. Yes, I am that tired.

In the meantime I just have to hang in there and try to get everything done. I really like my digital photography class, but it's hard because going around with a camera and snapping pictures from all sorts of angles is really exhausting. I managed to do this last assignment around my house, which was lucky because I only had the camera for a day and had to rest a lot. I'm a little worried that this week I'll have to go farther afield. At least nothing this quarter is really difficult so far.

Really Weird Night

Wow, last night was bizarre. And I'm still feeling it. o.O

The first two doses went just fine. I slept deeply with no dreams. At the end of the second dose I overslept my alarm by like half an hour, which has happened without anything weird before. But last night I had an interesting hallucination.

I woke up in my dark room and looked around. There was a ladder leaning up against my bookshelf, which made perfect sense to me at the time- I remembered needing to change a lightbulb yesterday and leaving it in my room so I could hang a couple of pictures up today. Then, suddenly, a bag of really tall golf clubs fell on me. It was startling because I hadn't seen them at all until they were falling towards me, and they were very long. When they fell against my arm they were really cold and smooth and it hurt a little. I sat up and leaned them back up against the ladder, suddenly remembering that they had been in the closet with it and that's why I had to bring them into my room, too. I decided to get up and go to the bathroom before going back to sleep.

When I stood up my door was open, and there was a cold white light coming in from the skylight over the entryway. I looked up at it as I came out of my room and started freaking out because it was snowing. I was really excited and ran to the front door to look out.

I was having trouble keeping my eyes open, but I could see there was a thin blanket of really fine snow over the grass. I was very impressed. I watched the small flakes fall for a few minutes until I couldn't keep my eyes open anymore.

As I walked into the bathroom I suddenly knew that I was in a hallucination. Then I felt hands grabbing my arms and hands and I couldn't move. I fought the paralysis until it went away and I could sit up and turn my lamp on. I was suddenly back in my room, with no ladder (I didn't actually do anything with a ladder yesterday) or golf clubs (my parents have never had anything even vaguely resembling golf clubs, haha). I went to the bathroom without passing any skylights and it certainly wasn't snowing- it snows lightly here maybe once every couple of years, and certainly not in October. I was pretty creeped out by the dark corners, but I figured leaving my light on would help me sleep the rest of the morning.

Unfortunately I was wrong. I took my last dose and read a book until I figured it was safe to go back to sleep, only to get plunged right back into serious REMland. I had dream after vivid dream, and every time I woke up I fought paralysis. I went through three different half-dream, half-hallucinations that way. In the dreams I had all of my senses so it felt almost like real life. I would wake up to find my eyelids closing again of their own accord despite my light being on, and then in an instant I was back to dreaming. At least one dream was Harry Potter related (not surprising as I'm rereading those), and in another one I was on a football team (which is hilarious because I'm the biggest wimp ever). I woke up late and got up to avoid going right back under again, and I'm still fighting my eyelids after being up for half an hour. I'm thinking I need caffeine this morning.

I figure it might be food related. I did try a couple new things yesterday. Hmmm.

Back to... Normal

After my bad reaction to Nuvigil, it took me a couple of days to get back to normal. It was interesting because I was still more awake than usual even the second day I was off of it. But of course it couldn't last, and now I'm back to dragging myself through even the easiest chores.

Luckily this quarter it looks like my classes won't have difficult homework. It all seems like it'll be pretty easy to accomplish, and even with all the resting I might be able to do a good job on my assignments. That said, I'm a little worried about the next short while because both parents will be gone on seperate trips.

Looking back a couple of months I think it's pretty funny how much my attitude towards my parents leaving has changed. Every little thing when they were home used to bug me. As I've been feeling worse, though, I've been relying on them a lot more. Since driving has gotten more nerve-wracking I've been avoiding it by hitching rides with a parent to run errands, or asking one to get me something while they're at whatever store anyway. Also, both of them being gone means all the little chores around the house become things I have to remember to do. And when I'm this damned tired every little extra thing is a problem- every extra step is. When I was doing better over the summer, I was really happy to have the house to myself. Now I think I'd rather have them around, not just for the errands, but because I'm feeling so lousy that I don't leave the house very much anymore. And it's pretty lonely with no one around, because as much as I like my dog he doesn't talk much.

My neurologist said the only thing left for me to try (in an attempt to keep me awake) are stimulants. We haven't tried them before now because weight loss can be a side effect, and that would be really bad for me. I'm still underweight even though I've finally gained back a few pounds. I'm starting to think it might be worth doing, however. And I have a feeling that this time next week I will have gotten fed up and called him back.

Fancy World Traveller

For most of this week my dreams have been so mixed up and nonsensical that I haven't been able to make enough sense out of them to record them. But last night was back to clear and interesting.

It started out in Japan where I was visiting my host mom and we decided to go shopping. We went to this store that had a variety of things. There was a lot of jewelry and clothing but also lots of kid's toys. At one point I was looking at these rainbow-colored puzzle pieces that you had to try and make a cube out of, only I couldn't get them to fit together and it was really difficult- they would change shape as I picked them up. I looked around at the earrings and the dinosaur toys and then at the clothes a little bit, and was excited about the fact that the blouses were small enough to actually fit me (I have trouble finding clothes that fit me here in the States because of how small I am, and in real life Japan it really was easier). I wasn't sure if there was a dressing room though, so I settled on a couple of dinosaurs and a necklace or something.

After that it turned out I needed to get dressed up for something. Now I was in a mall, but my closet was in this room off to the side where I could change. I had some really crazy clothes and was having trouble putting together anything that matched. I was getting pretty frustrated because I would put on one thing and it would turn into something completely different as I put it on, so that I would end up not matching again. I somehow didn't catch onto this for awhile though and just kept at it. Finally someone came in to help me (whoever I was with; maybe my mom?) and she had found someone to do my hair and make up. And after that I totally looked like a movie star, which I thought was pretty weird and not me but I figured it was just for this big event I was going to.

I actually don't remember what happened next, just that after awhile I ended up in an icy field with my parents, crossing it carefully because there were those concrete blocks they put at the end of parking spaces lying everywhere, only instead of concrete they were made of ice. It turned out to be a memorial of a war with the blocks symbolizing something. After awhile it turned out we had crossed over the sea into China and were right on the edge of Shanghai.

It was pretty cool because it looked like a Chinese watercolor painting of a rural landscape. My parents explained that they had wanted to show me Shanghai because they really liked going there on their trip over the summer (which is true). We went down a hill into an alley that looked like it belonged in Europe with medieval stone buildings really close together. It was after dark and I was kind of scared, but my mom started talking to the locals in Chinese (which she really is learning, though she was way more advanced in the dream) and sorted out where we should go. I was a little worried because I suddenly realized I didn't have any of my medication with me, and I didn't know where I would find something that I could eat. At the same time I was glad to be there though, because I felt that if it had been up to me I would have been too cautious about these things to visit China in the first place. And I was really glad to be there and learn something.

A Bad Experiment

Well, at least now we know that Nuvigil is officially not gluten free.

For most of the day I was awake, which made my life much easier. Unfortunately I was also having a gluten reaction. In the morning right after taking it I was so brain fogged that I couldn't think. It's hard to describe because it isn't the same brain haziness that I have anyway with Narcolepsy. It's less about losing track of things and more about just not having any thoughts in my head at all. And if I have to make a decision I can do it, but it takes a really long time to get any thoughts into my head. So that was fun this morning. I spent a good solid ten minutes trying to decide what I was going to eat for lunch when it was really kind of obvious.

After that came the stomach cramps. Ouch. That lasted most of the afternoon. After lunch my brain was mostly working again, which was good because I had a class. It looks like it'll be really good, actually, but it was long- it went all the way until 5. I ended up driving home in traffic, awake but dead tired. If I thought I was tired before the Nuvigil, I had just forgotten what a gluten reaction is like on top of the Narcolepsy. It completely floored me. I came home and headed straight for the couch and it kind of messed up and switched around my evening routine.

So my digestive system officially says no. Which is unfortunate because my brain wants to say yes. Halfing the pills took away the hyperness and heart rate issues and being awake was awesome. If my stomach could handle it it could open up a lot of possibilities for me.

My latest idea is to look into the latest Celiac disease treatment and see when it comes out- it's a pill that theoretically allows you to eat gluten without a reaction. Last I heard it was in clinical trials. Personally I'm not putting any money on the makers of Nuvigil deciding to suddenly care and change the fillers, though I guess I'll keep writing to them anyway. And in the meantime, it's back to the old daily dragging myself through life.

Kind of Bummed

Well, I called my doctor today and sure enough he wants me to start at a lower dose by cutting the pills in half for the first week. That's fine by me, and hopefully I won't have stomach issues. I totally realized that I've been a little depressed for a couple days ever since I stopped the Nuvigil, and now I'm wondering if that's not a sign of gluten being in it. I guess I'll find out this week if I react to it or if stopping it suddenly was what threw me out of whack. I should probably just call them and find out if it has gluten, but I figure if I try it again instead at least I'll get to be awake for a day or two before it catches up with me. I'm so damned sick of being this tired that I'd rather brave gluten than play it safe.

I'm also kind of bummed because my back up plan of moving to Canada looks like it's not going to work. First of all, you have to prove you can support yourself for at least six months, which I can't even do here- otherwise I would have a job and not have my impending health insurance problem to begin with. But even more troubling is the fact that they do examine your health when you apply for a visa and they won't let you in if you would cost their health insurance system a whole lot of money. Which I'm pretty sure I would. I'm not going to discount the possibility completely, but it isn't looking promising. So it's back to coming up with some other creative solution to my problem.

Back to Crap

I changed my strategy this morning, but I'm not sure at this point if it was the right thing to do.

Even though I was really sleepy last night, it took me an hour after the first dose of Xyrem to actually fall asleep because my heartrate was still up. When I did eventually sleep I didn't dream at all and got a lot of rest, which was good. But when I woke up this morning I was a little annoyed to find my heartrate still faster than was comfortable. I decided to not take the Nuvigil this morning and talk to my doctor on Monday first, just to be safe.

At the time it did make a lot of sense. Besides the whole better safe than sorry thing, I felt so wired and hyper yesterday that I'm wondering if starting at a lower dose would be a good idea. At any rate, I figured waiting to talk to my doctor about it would be worth it.

It's amazing how feeling awake for just one day can make you forget how it was before. By the time I was going to lunch with a friend I was back to being totally exhausted even though I didn't do anything in the morning. It was frustrating and by the afternoon I had decided that I should have tried the Nuvigil again anyway. I mean, maybe it would have mellowed out over a couple of days. And it made such a huge difference in my life for the 24 hours I was trying it.

I just really want this to work, because if it does I'm one step closer to maybe being able to be employed some day. Being able to work would mean I could have health insurance even after my dad's stops covering me in a year, maybe actually be able to support myself someday without my body giving out on me. And someday maybe I wouldn't have to live in my parents' house completely dependent on them because I can barely do the small amount of classes I'm doing, much less actually make money somehow.

As you can see, I'm having trouble not getting my hopes up. It's dangerous because if anything goes wrong with this newest experiment I'm going to come crashing back down to earth again. And reality kind of sucks.