Friday, July 31, 2009

More Swimming

Last night I went on a trip to Canada with the same roommate from the last entry and a couple of other people our age who we didn't really know- I guess it was an organized group thing. The flight was pretty long, but we were only there for a weekend or so. We were staying at this house where I could make my own food (definitely a requirement in real life travel for me) next to a lake. I remember swimming a lot, and that I was trying to film stuff but waves kept crashing over my head. Apparently the camera was waterproof, as I wasn't worried about that, but it did interrupt my attempts to interview people, lol. The scenery was beautiful, with snowcapped mountains surrounding the inexplicably warm lake. I was sad to leave, but also glad, because I was running out of food. I was hungry on the flight home because I didn't have enough crackers left- also something I stress out about during travel.

Today has been interesting. On the one hand, I'm definitely still sick- my sinuses are still gunky, my throat is sore and I'm still tired. But on the other, I think my latest increase in Xyrem has finally started to settle in. I was very awake- way more than before, and I have this vague sense of actually existing in my surroundings. The latter is a difficult thing to explain, and if you haven't experienced it for yourself you may not understand what I'm talking about.

Usually I have a sense of my surroundings- hazier than most peoples' perception, and occasionally less accurate. Then I have a sense of me, or rather my mental self, which seems to be floating in my surroundings and doesn't have a location that I can physically pin down. Then, apart from that, I have a sense of my physical body which is similarly disconnected from my sense of me and my sense of my surroundings and that I also can't exactly tell where it is. All three senses have a vague location, and I mostly use my conscious brain to make it more accurate- like I know consciously that I'm sitting in one corner of my bedroom right now, so it's not like I don't know exactly where I'm located, it's just that it's a thought. I don't actually feel it. My shoulder hurts, and I know vaguely where my shoulder is, but not exactly without looking and then I'm still sometimes a little off- like if I reach up to touch my shoulder while I'm looking at it, when my eyes estimate I'm going to feel my hand isn't always when I do actually. Like my eyes can think I'm touching something when I'm not, and my hands can feel something but it's hard to see if I'm touching it yet. I'm not sure if that makes much sense, but then again it is pretty bizarre, so maybe that's okay.

So occasionally when I raise my dose of Xyrem, for the first few days that it settles out I can actually physically feel grounded in my surroundings. It's very weird to me because I'm so used to not having that sensation, and the first time it ever happened in my waking life it really freaked me out. It's so much easier to do everything, like to avoid tripping on things all the time, or to be able to drive without being nervous because you do know exactly where your car is in the environment. I got that feeling this morning when I was sitting on the front porch watching my dog while we both enjoyed being outside. It's such a strong feeling of hereness after years of feeling disconnected that it's rather striking.

I wish it wasn't the case, but it never lasts more than a couple of days, if even that long. Every time I raise my dose I go back downhill a little after the initial settling out. Life still ends up an improvement from the dose before, but still not the best I can feel.

Interestingly, in my dreams I do have the sense of hereness that I don't in real life. I think that's part of why I enjoy the good ones so much, and part of why all of my dreams seemed so much more real than my waking life pre-medication.

On a mostly unrelated note, I think my dreams lately are trying to tell me to go swimming. Hmmm. Maybe I should.

Thursday, July 30, 2009

Beach Theme

A night or two ago I once again found myself on the local beach. I was staying at this really friendly and small house-like inn that was literally right on the water with two high school friends and my freshman roommate (who is from across the country, so it was random that she was there). I was explaining all this really obvious stuff to them, like what surf is and how you have to be careful about undertoe. The beach looked a little bit different from its real-life counterpart- there were all these big hill-like piles of built-up sand in the water, and the beach itself was hilly in a very not-beach kind of way. The water was a darkish green color that was beautiful and jewel-like. There were lots of big waves crashing right on the beach, and we definitely got wet walking along there. At one point we went out in a little boat. It started to get dark, though you couldn't see the stars very well because it was a bit cloudy. Even after dark it was warm and breezy.

I dream about the beach a lot, in many crazy variations. One time a friend and I were eating dinner in this restaurant that was partially underwater- the wall next to our table was made of glass, and you could see the fish swimming around and the waves sweeping along the windows. As we ate, the sky darkened threateningly and the waves got bigger and bigger and more violent. I started to worry that a hurricane was coming, and that the glass would break, but it didn't.

Another time I was staying in this very open and large hotel with my parents, and I really wanted to go down to the water and play in the sand and the waves. It was very windy at the hotel, and my parents were being very slow about getting ready. We kept forgetting things and having to go back to our room, and the hotel had a rediculous amount of stairs. Finally I just left without them because I was determined to play in the sand and was tired of being frustrated. I had a great time digging and lying in the little waves, absorbing sunlight. Eventually my parents did come down and find me.

Then there was the time I was driving to the beach with a friend and all these dark clouds were gathering. We got there and were determined to go at least walk a little bit on the beach before it started raining, so we threw our stuff into our hotel room (which was one of a group of little round huts right on the water) and headed out. The clouds were so dark that it seemed like night outside even though it was the middle of the day, and we looked back in time to see multiple tornadoes touching down along the horizon. It was terrifying, and we were very exposed with nowhere to hide, and the waves were getting very violent. We just ran down the beach away from the direction the tornadoes were coming from, and somehow managed to escape.

I spent a lot of really fun days at the beach as a kid, and I still go there every chance that I get- which is sadly not very often. It's just far enough a way to be a pain to get to, but close enough that you feel rediculous for not going more often. When I do get there I always have a great time. I love just sinking my toes in the sand, and standing in the waves. The ocean is very inspiring to me, and I have a deep connection with it that never really leaves me, even when I'm a thousand miles away.

Wednesday, July 29, 2009

Bad Feeling

Well, so much for feeling better. I was doing pretty good on Monday, optimistic about catching up and getting back to class this week. Then I woke up on Tuesday, feeling worse and once again with a fever. My digestive tract has been in more pain every day because of the antibiotic I was taking, and it was so bad this morning that I stopped taking it and called my doctor. I was dreading talking to her after the unfortunate appointment last week during which she blamed me for getting sick again. It turned out that she didn't even talk to me, just got her nurse to call in a different antibiotic since the one I was on was obviously doing more harm than good.

Meanwhile, I missed my Tuesday class, which is my fun class this quarter. And I'm having no luck trying to accomplish the homework for my really hard Friday class. It's to the point where I had to email the professor (again) and explain that I'm still feeling really bad and that I don't know if I can turn it in. Unfortunately I think I'm stuck going to class tomorrow and Friday because if I have to miss again I'll be pretty much screwed. And who knows if the new antibiotic will have kicked in by then or not.

I was seriously considering dropping one or two of my classes. But then I found out that I can't do that now without paying for them anyway, plus I know that next week when I'm finally feeling better I'm going to need something to do. It would suck to drop them only to get better and have to wait the rest of the quarter to try again.

Besides all that, I take my responsibilities very seriously and refuse to give them up without a fight. I was raised to be a really responsible and dependable person, and I'm very proud of this fact. It's very hard for me to not go to a class, even when I'm way too sick to go, simply because I know I'm supposed to be there. Asking for extensions is even more difficult for me because I've always been proud of my ability to get every assignment done no matter what. So when I can't physically do something because I'm too sick, even though I know it isn't actually my fault at all, it just really hurts.

Here's to hoping I can survive the rest of the week.

Tuesday, July 28, 2009


Last night in the middle of the night, I had a very loud hallucination- all sorts of banging, scraping, shouting and jangling sounds were coming from the entryway. I woke up with my heart pounding. It actually surprised me a little that it effected me that much- I've had literally uncountable nightmares and hallucinations based on people breaking into my house. That's definitely the most common theme. By high school it was a private joke that I was so used to it. Sometimes it would turn out the person who was randomly in my house was fixing something, and then it was okay; sometimes the person was hunting me down to kill me and I had to hide under the floor or climb out my window and up onto the roof; sometimes there was a whole group outside with guns looking in the windows, trying to shoot at me, and I had to figure out how to get around them and escape. I think I've always been afraid of people breaking in, and probably inherited it from both parents. The whole time I was growing up we had an alarm system and my dad especially has been pretty obsessed with security. There may be a good reason for it, but if there is I haven't heard that story (or maybe I just forgot it, haha). We've had way more times our alarm randomly went off for no reason than anything real- we've always lived in safe neighborhoods, and had just one instance of someone stealing a bike out of our garage. I'm still on the fence about whether or not my parents cross the line between cautious and paranoid, but at least I know where I stand: paranoid as all get out.

The good side of all this is that I'm pretty sure if someone really broke in and put a gun to my head for whatever reason, I wouldn't be in the least fazed and would most likely start waving my arms around trying to wake up, haha. And then the robbers would get very unnerved and run as fast as possible in the other direction, shouting about the crazy person. No need for an alarm after all. :D

Monday, July 27, 2009

Not Dead Yet

Most of a week of antibiotics later I'm doing a little better. I'm less gunky and have a little more energy and my stomach at least hasn't fallen out yet, even though it feels like it wants to. I had the weirdest night sleep ever for a couple of nights- I actually was completely out in three hour spurts, with no dreams, hallucinations or even awareness mixed in. I'm pretty sure that's what it's like for normal people when they sleep, or at least that's what I've heard, haha. But it is sad to not have any bizarre dream stories to tell.

I'm very impressed, however, with the fact that I'm mostly caught up with homework right now. I say mostly because I'm still trying to figure out this week's Flash homework, which I unfortunately missed the lecture on. The instructor sent me links to tutorials, which are helping a little, but I'm easily frustrated with these things because I have such a clear picture of exactly what I want and computer programs tend to get in the way. I can't help thinking how much easier it would be to just draw the damn thing on a piece of paper, which is silly because the point of this class is to learn the software. I'm pretty confident that I can figure this out, though. Definitely with three more days of fiddling.

Of course because there's absolutely no way I have the energy to work on non-homework art right now, I'm suddenly struck with a lot of inspiration. That always seems to happen- as soon as I have some free time and energy, I don't have any good ideas, but the second I have homework to do, am sick and have even less energy than usual, I get tons of great ideas. Right now I have at least five. Well, maybe after this week I'll be feeling good enough to get some of it on paper in addition to everything else I need to do.

Sunday, July 26, 2009

The Best Dog Ever

I took my dog out in the yard a moment ago, to a familiar occurance that happens to really get on my nerves. Another dog and owner were passing by, and my dog started to growl. I sternly told him to stop with a word and a hand signal, in an attempt to keep him relaxed until the other dog left. And as often happens, the other owner started telling my dog it was okay for him to growl (which fortunately, he doesn't understand) and acting like I was the meanest owner ever for actually bothering to give my dog discipline. I know the other owners in the neighborhood mean well, and that I would do better to explain myself to them instead of ignoring them or brushing them off, but I can't stand it when people start talking to me like I'm the worst person ever toward my dog.

Part of why this really gets to me is that I have the best dog in the entire world, and am very conscious of this and sincerely want the best life possible for him. The two of us have gone through a huge amount together, and he makes my life worthwhile in every way. And a big part of our unshakable relationship comes from how hard we've worked together to enrich his life and refine his now considerable manners.

When I was in Tokyo for an academic year of college, my host parents told me they were thinking of getting a dog and that if I wanted, I could take him home with me when I left if I got attached. This was the most amazing offer to me because I've always loved dogs, but never really got to live with one. My dad is definitely a cat person, and my mom is allergic to anything with fur or feathers, so aside from a couple of backyard dog experiments that mostly turned out badly, I never had a real pet of my own. I went to check out a pet store one day, not really intending to get anyone yet, and suddenly there was this furry ball of two-month-old dachshund shivering in my arms. I was instantly sold.

Not that I had any idea of what to do with a puppy, never having had any training in that direction. Several days later, he was already wreaking havoc all over my host family's condo. The rest of my trip I spent belatedly figuring out important things, like how to housetrain a puppy, how to teach him not to constantly bite you, how to mostly keep him from chewing things up (that took much trial and even more error), how to teach him to walk on a leash, etc. By the end I had to pay a lot of money to replace the ill-fated carpet in my bedroom, and had many arguments with my host mom on what to feed him and how to do everything. Luckily my host parents not only remembered it was technically their idea in the first place, but fell in love with him just as much as I had in the pet store.

At that point his manners were dubious. He's a very headstrong guy, for one thing, and needs persuasion that for a long time I didn't know how to give him. So when I brought him back to the States, he immediately took over the house that summer. My mom completely spoiled him, and kept giving him piles of chicken for no reason when he was begging. He got way out of control and enjoyed humping everything in sight. He also figured out that barking is fun, which he proceeded to do any time I shut him in my room to keep him from destroying things. I was worried and quite annoyed with him by the end of that summer. I was also feeling pretty crappy, which didn't help the situation.

When I went back to college I brought my dog to live in the apartment with me, three friends and two cats. It quickly turned out that one of my housemates was very allergic to him, which caused room switching and forced him to be confined in a baby-gated room. It was back to total havoc again right away. He started barking and barking when I was out of the room, peeing in random places on the floor and chewing up my roommate's belongings. I got him fixed, which helped a little, but I still hadn't really figured him out so I wasn't sure what else to do. It strained relations with everyone else in the house and was just more stress added to my already stressful situation. That said, there were some good times, though- we would go on long walks in the woods, which we both enjoyed. I really miss those walks. We don't live anywhere near woods anymore.

After graduation, we moved back home to a different house and another difficult arrangement. My dog had to stay on the first of three floors because of my mom's allergies and his lack of manners. And that's when I decided we were going to start working on his behavior problems. I started doing research and discovered the Dog Whisperer and It's Me or the Dog, two really good dog psychology shows. I learned a huge amount from both and started to combine the two techniques. It really allowed me to begin to understand what was going on in his little dachshund head, and I figured out how to finally communicate with him. We worked so hard for the last year, and with exercise, discipline, affection, hand signals and tasty treats, he's now the perfect gentleman. I up the challenge every day to keep him thinking, and every day he amazes me more and more with how hard he works and how well he listens. We went from crazed uncontrolled barking to the occasional single bark, and I can tell him to stop barking and he will immediately. We went from jumping and humping greetings to head low, tail wag meetings. We went from him dragging me down the street to perfect heeling. When I stop, he sits right down. It's astounding how completely awesome he is.

There is still something else to work on now. He's very afraid of other dogs because I didn't socialize him when he was younger, what with living in Tokyo and not knowing anyone. He was starting to get over it from walking around our neighborhood and meeting dogs, until one attacked him. Ever since then, we both get scared when we come across other dogs on the walk. Right now the best I can do is damage control- I discourage him from growling and barking at other dogs because I know that his anxiety could lead into aggression if I allow it to escalate. I distract him when he gets nervous with games and commands. What he really needs, I think, is long exposure to a big group of dogs that aren't going to attack him. I'm not sure how to accomplish this, as I really think something like a dog park would be a disaster because most people don't have enough control over their dogs to make it safe.

In the meantime, I would like all the people who spoil their dogs and think I should do the same to lay off the "but antagonizing other dogs is normal!" and "disciplining your dog makes you mean!!" lectures, because frankly I know I'm doing what's best for my dog at this point, and all our hard work has paid off. I love my dog more than anything in the world, and his life is rich with challenges, fun games and boundaries that make it a structured and relaxed existence. He's happier these days and I am, too. He's so polite now that he's gained another floor of the house, and now we can watch our favorite dog training shows together.

Saturday, July 25, 2009

Sleep vs. Eat

I'm still very sinus-infectionafied, hence the lack of blogging yesterday. The good news is that I somehow managed to turn in some homework and am now pretty much on track again, if I can get this week's work done on time. Which I think I can, thankfully. If I survived my first college experience, I can deal with this easily.

For one thing, my medication situation is vastly improved nowadays. When I was tackling my senior year at Carleton, I was faced with a very interesting dilemma. It's one of those ironic twists that's so unfortunate that it was actually really funny to me, even at the time. My dilemma was one of Sleep or Eat.

At the time I was on Xyrem (only Xyrem) for my narcolepsy, and it was very helpful for getting me sleep. It also took away my appetite completely and gave me anxiety problems. This was really bad for me because I was already borderline underweight from having Celiac disease for years, and my diet is so strict that I have to cook most of my own food- and I'm a pretty boring cook to start with. I'm also exhausted most of the time, and cooking is not something that I enjoy. So the result of all this was that I had to force-feed myself, because I had no appetite, and so I didn't eat near enough food every day because of the Xyrem side effects.

Because of all this, sleep and eat became pretty much mutually exclusive. I could take enough Xyrem to get some sleep, but that would leave me in a state of barely eating anything. Or I could take less Xyrem and have more nightmares and go back to living in a constant haze, but actually want food and be able to eat. I really did think it was pretty hilarious at the time. I mean, you can't make this shit up.

For most of a year I chose sleep, simply for survival reasons. I was determined to graduate and that was, I knew, the only way to do it. The result was that I lost weight dangerously- I was 95 pounds at my lowest weight, and for my body type I should be 110 at least. It was really scary, actually, because I could see bones where I really shouldn't. You could see my ribs without me sucking in my breath or anything, and my hip bone had way less padding than it was supposed to. As soon as I graduated I went back home and saw my neurologist, who immediately lowered my Xyrem while we figured things out. And then I had to opposite problem- I had my appetite back, but was so exhausted all the time that I couldn't really appreciate it. I was eating better but still not gaining weight. My neurologist wanted to put me on Provigil, because then I wouldn't need as much Xyrem (therefore lessening all the side effects) and could still be awake during the day. This sounded like the best plan ever, until I found out that Provigil isn't gluten-free.

Go figure. And it's not even the for sure kind of gluten-containing. It's the stupid, let's fill it with whatever is cheapest at the time kind- so a given pill is gluten-free or not, but there's no way to actually tell. My neurologist wanted me to just try it anyway, but my days of taking chances with gluten have long been over, and I convinced him that no, steadily worsening depression and exhaustion and pain issues were not "worth a try".

Then we started trying antidepressants, and once we found the right one (after some months of bad experimenting, including an allergic reaction- that was fun) life got much better, and I was finally allowed to both sleep and eat. As a bonus, I started gaining weight back, and still am. I'm now proudly in the triple digits once again at 103 pounds. Woohoo! And I've filled out nicely, if I do say so myself. My appetite is huge again, and this makes the need to constantly cook infinitely easier to deal with. I have a feeling I have a few more pounds in my future.

At least, with all that I've had to deal with, I'll never take this stuff for granted.

Thursday, July 23, 2009

Yet Another One of Those Days

Yesterday several different things came to a head in a not so great kind of way. I started a new quarter of classes last week, making this week the first week anything was due. In order to do my homework for one class that promises to be especially work intensive, I needed to purchase a really expensive program. I decided to order it online so I could get the very substantial student discount and therefore save like 500ish dollars. So, like the good student I am, I ordered it on Friday right after class to have it delivered Monday or Tuesday so I would have plenty of time to accomplish my homework by Friday.

Meanwhile, I was slowly getting the next in a long line of sinus infections that have gone back several years. It started coming on worse after I decided to actually have a vague attempt at a social life this weekend and went to the mall with my cousin and her friends for a couple hours on Saturday, then to see a movie with my best friend on Sunday. Apparently this was too much (because oh my god, it was so much!) for my body to handle while trying to hold off the sinus imfection. So I went downhill pretty fast. Before I know it, I'm feeling pretty bad, it's Wednesday, I haven't even started my homework for Friday because the program never showed up at my house, and my parents are coming home on Thursday which means there are still things that need cleaning.

So on Wednesday morning I called costumer service and found out they were out of the program I wanted and wouldn't even have it for another week. So I cancelled that order and ordered it from somewhere else. Then I decided it would be a brilliant idea to go try and use my school's computer labs to at least start the damn thing. But I was starting to realize I was feeling pretty bad, so I called my GP and set up an appointment to get an antibiotic just to be safe. And then I drove over to my school to find a class in every computer lab, but at least I figured out when they are free so I know for the future. Then I ran errands on the way home because I was still mostly ignoring how sick I was starting to feel.

By the time I got to my afternoon appointment I was feeling really bad. It turns out I had a fever. And my doctor made me really mad by commenting that if I get sick this rediculously often, it must somehow be my fault. I think she's really frustrated because no matter what antibiotic she throws at my sinus infections they just come back in a couple of weeks. I suggested to her that I do have a screwed up immune system, to which she acted like I'm "too young" to have this problem. Thanks a lot. Let's help by blaming me for my health issues. I really appreciate that.

So I left there really upset and feeling really really bad, and dropped my prescription off to get it filled. Too tired to wait at Walgreens for twenty minutes, I just dropped it off at the drive thru and went straight home to the couch where I got steadily worse all evening and lacked the energy to drive two minutes to go pick up my antibiotics. With no one around to pick it up for me, I didn't get it until this morning. To make my day really fun, I ended yesterday having to write two instructors who don't know me and therefore don't know I'm actually a really dedicated student long emails explaining why I'm not going to either class this week. My Friday teacher was really nice about it and I found out today that he's giving me until Sunday to email something in, which I may actually be able to accomplish.

I'm feeling a bit better after antibiotics and most of a day on the couch. It'll be interesting for my parents when they get home late tonight and find their very sick daughter having trouble making it to the damn bathroom tomorrow. At least I did most of the cleaning before yesterday.

That's life for you. Back to the couch!

Tuesday, July 21, 2009

Fun Things

Today I somehow managed to accomplish a lot, though I did get to class without my homework... or any memory of even having had homework. >.> Which, therefore, I never did. But my professor knows me and let me off the hook, which was nice. However, I can't help but feel like this is somewhat of a bad omen for the rest of the quarter.

But after yesterday's depressing entry, I've decided I want to write about something fun today. Like all the things that I love. Maybe this would go more smoothly in list form.


1) My dog. He's officially the best dog ever, and way cuter than any other dog. He follows directions awesomely despite having a serious troublemaker past, and is a very professional Nap Assistant. I could go on forever about his general fantasticness, but instead I'll move on.

2) Any Backstreet Boys cd, haha. I'm completely addicted. I like catchy stuff with a beat, what can I say, even if it has the dumbest lyrics ever. XD I like to drive around singing it as loud as possible.

3) Coke icees. Especially cherry coke ones. I LOVE icees and any time I need to feel better about life, icees are the cure. They make me want to skip across the parking lot on my way out of Target, lol.

4) My car. There must be something utterly magical about the damn thing, because despite having all the odds being stacked against me I still haven't gotten in an accident, not even a minor bump. And I drove it for at least four or five years before any diagnoses. And even though it has a few minor flaws (like slow acceleration, haha) I like my car a lot. It's small and cute, kind of like me. XD

5) Harry Potter. I've been obsessed since book 3 came out, and that was awhile ago. I had a hilarious conversation about the plot with my best friend on the way to see the sixth movie, and it sounded like the craziest soap opera ever. Love it!

6) My characters. I adore them, and love drawing them. Besides that I'm a very proud parent. XD I think they're very interesting and well-developed, and I'm proud of how far they've come over the years.

7) Drawing is officially the best activity in the world, but we knew that already. It can fix anything.

8) The Lord of the Rings is one of my favorite books, and I love what they did with the movies even if I do complain about something occasionally. It was my first real literature experience- I read it in the sixth grade, and adored every minute of it.

9) The color blue-green. Yay. I love colorful or shiny things, lol. But blue-green is my favorite. One time I had a dream about a lagoon with water the purest shade of blue-green, and I'll never forget it even though it was at least six-ish years ago.

10) Cheese!! I love cheese. XD It makes my cooking edible, haha. I put it in everything.

11) Any of the Disney Pixar movies. I love them all because they're so well-made and just have so much heart. I think my favorite is The Incredibles. Also, the Disney animated films that came out when I was a kid- Aladdin, The Lion King, Beauty and the Beast, Mulan, etc.

12) Art. I've completely worn myself out looking at art online, especially browsing DeviantArt, for hours and hours. And I have a lot of fun at art museums, too.

Speaking of wearing myself out, it's my bedtime. So good night. :D

Monday, July 20, 2009

A Couch Day

I had a slow day today. I managed to get it through my stressed out head that I needed a day on the couch. I've totally worn myself out this weekend and it was getting worse as I kept pushing myself anyway. So today it was just me, my dog and the tv. I found a new cleaning strategy too- if I only clean during commercials, I can rest and still get things done at the same time. Muahaha.

It has, however, brought my job worries back to the front of my mind. Fortunately, after years of vague unarticulated fears, I'm finally really able to pinpoint why I'm so worried about eventually trying to support myself. Unfortunately, the fears are actually founded in something. I'm finally really beginning to digest the fact that I have Narcolepsy, and to really understand what this means for the rest of my life.

When I was first diagnosed, I was just really happy to have a diagnosis that might result in some treatment and relief from the nightly horror film festival. And I was very happy (and still am) with how much the Xyrem helped my nightmares and hallucinations go away. I was also very happy and encouraged when the Remeron turned out to take care of the side effects and, as a bonus, the depression I've been fighting for so many years. I've been gaining weight back (triple digits again! Woohoo!) and feeling much better about life in general. Everyone I know has been commenting on how much better I look.

But as I approach the maximum dose of Xyrem, it's beginning to sink in that I'm never going to have the energy of the people around me. I'm never going to be awake and alert they way my dad is, or any of my friends. I will always run smack into things and hurt myself because I literally can't accurately place my body in the world around me. Every day I will have to fight the exhaustion that forces me to take naps just to keep going. I'm always going to catch colds every other week, and have to spend days like today lying down for hours to recover from my occasional attempts to be social. A couple hours at the mall pretending to be normal, and here I am still recovering two days later.

I would be lying if I said it doesn't scare the crap out of me. I'm in my prime right now. This is the healthiest time of my life. If this is the height of my energy level, how will it be in ten years? Twenty years? I'll probably look back wistfully and think of how great it was to be able to function for an hour at a time. If I'm worried about supporting myself now, how will I manage in the future?

I have two-ish years left on my dad's insurance, which gives me a bit of a deadline. But I'm seriously wondering why anyone will want to hire me when they can hire someone with similar skills, or even slightly less, who can actually work all day. Someone who doesn't have make every meal herself and work in two hour spurts separated by naps. Someone who isn't easily confused and a bit awkward because she can't think fast enough to keep up. Every time I've been interviewed by someone, I've ended up crying because I get so lost during the rapid-fire questioning.

I've been thinking that maybe the best way to handle the situation is to start my own business. If I go freelance, I can work in between my really rigid daily routine that gives me my maximum amount of ability to function. So that's a thought. But I'm not going to completely let go of the idea of working part time. Though I really don't think I could stay healthy and make enough to support myself doing that. Full time is pretty much out of my equation right now. Full time would be like college, only with more rigid hours. And I've made a promise to myself that I'm not doing that again.

I think I would feel better about things if the people around me understood my fears instead of just brushing them off and telling me that I'll be fine. It really urks me and adds to the anxiety because if the people who have known me for my whole life don't believe me when I tell them I have a legitimate, life-screwing problem, how will I convince possible employers of my special needs? Last time I registered for classes, one of the academic advisors was giving me a hard time about only taking four classes. And when I explained that I had multiple health issues, he didn't believe me. Yeah, that boosted my confidence.

So for now I'm just going to keep worrying and trying to explain my fears in the hopes that people might actually believe me more often in the future. And continue slowly working my way through more classes so that the people in my life don't give me too hard a time. Here's to many more days on the couch.

Sunday, July 19, 2009

Anything But Art

Last night was one heck of a light show for me. I had at least two very interesting dreams with unbelievably gorgeous scenery. In the first, I was a little kid at a big family reunion- I was hanging out with a bunch of my cousins. I wasn't me, but a little boy, and the family wasn't my real one either. But all the kids were going on this really fun scavenger hunt in this scenic woodsy place on a lake, and we rode in canoes and camped on the shore and looked at the stars. And we were listening to these legends that the older folks were telling. It was really fun. When I started to wake up I fought it because we were about to find whatever we were looking for in the scavenger hunt and I wanted to see what it was- but instead of that dream going on, I ended up in a different one in which I was riding in this... actually it might have been a hot air balloon now that I think about it. I was floating past this night city skyline, but the lights in the buildings were all colors of the rainbow, making it even more beautiful than usual. And then a fireworks show started behind the buildings. The image has stuck in my mind all day because it was so amazing. It may need to be drawn. But we'll see how that goes. I've had a pretty stubborn form of art block for awhile now. But maybe I ought to rewind a bit.

I've been drawing since I was two years old. I still have some of my really early stuff, which is, of course, hilarious. In elementary school I was a very well-behaved student (and hopeless teacher's pet, haha), but still managed to get in trouble for drawing when I was supposed to be paying attention. At that time I was mostly inspired by Disney, as you might expect, and various cartoons (like Doug and Rugrats). I had my own myriad of characters that only got more complicated as I got older. In middle school I discovered the internet, and through that a whole host of artists, especially furry art (otherwise known as "anthro" for "anthropomorphism"), which is basically about characters that are some combination of human and animal. At that point, when I was about thirteen, I started to conciously work to improve my drawings. That was when I really got serious about my art, which was literally what got me through high school. Art has always been how I deal with life.

This is something that has been difficult to get across to my esteemed family members however. I learned early on to avoid the truth when adults asked me what I wanted to be when I grew up, because if I said "artist" they would laugh and tell me I needed something that makes money. My parents walked a very careful line between encouraging me to be creative and warning me off of art as a profession (they're both scientists, and wanted something more academic for me). We got in many fights during my awful high school experience when I would insist on slipping some art in between my mounds of impossible homework and constant need to nap. I fought them only because I knew that art was absolutely essential to my survival of daily life. But things didn't come to a head until college, when my illness caught up with me and, forced to choose between my two majors in my last year, I chose the one they didn't like- art, of course. That was one phone call I'll never forget. There was a lot of shouting on one side and crying on the other. But once it was done, they did what they always have done- they turned right around and supported me in what I wanted to do. And when I came home, decided I wanted to take classes in animation and go forth and make movies someday, they provided the support and the funds. I've spent the last year trying to convince them that you can, in fact, make money by being good at drawing, and I think I'm finally getting there.

The main problem I have now is this long term art block. But I think I know what's going on there. For years now I've been working on finding a way to really face what I've seen and heard and felt in my dreams because of how much that's effected me. And it's difficult for me to express, but I think I'm finally starting to get there. Once I've dredged up that stuff and gotten it out, I think I'll feel much better about life and can go back to the colorful character drawings I've always done. But in the meantime, I'm having a hard time making any art. Also, I often find myself very inspired, but lacking the energy I need to accomplish anything. I'm learning slowly that the days of me chugging out a piece in a day or two of straight working are over, at least for now. I'm taking things slower and stopping when I'm tired and coming back later. But maybe something really good will come out of this, eventually.

Also, then I can show people and creep them out, which is always fun, haha. I get way too much entertainment out of creeping people out. XD

Saturday, July 18, 2009

Parental Appreciation

I had an interesting hallucination this morning. There were three people standing in my closet having a conversation. One was shouting about something- it was really loud and what I assumed had woken me up. The other two were talking very quietly. I was paralyzed, lying in bed on my stomach, which was weird because usually I'm on my back during these things. I remember thinking I must be hallucinating, but I was confused about the position I was stuck lying in. And then I suddenly woke up on my back. What I think actually happened is that I had a hallucination dream about being paralyzed and hallucinating. Hallucinating about hallucinating? Really, brain? Is this totally necessary? XD

On the upside I'm feeling much better today. My stomach hates me very much, but I actually have some energy. Which is good, because I need to clean. >.> A lot. Haha. I think all of the cleaning that really needs to happen will take me multiple days. It's not that the place is really all that dirty. It's more the combination of two important factors: cleaning really takes it out of me (probably all that standing up and you know, moving around nonsense), and the standards are very high. You see, my parents (who have been gone on a very cool vacation) are coming back this week, and my dad is a total neat freak. He does admit this, and does almost all of the housecleaning around here because he wants it done right. And to him, right means frighteningly spotless and organized. To be fair, he used to be much more particular and has mellowed out over the years. However, no matter how much work I put into cleaning this week, the fact remains that he most likely is going to re-clean everything this weekend. Every part of every lamp will probably be wiped down, for example. But still, I want to put forth the effort anyway, just because I don't want him to feel like I wasn't taking care of things.

I definitely have a weird insecurity about not impressing my dad enough. It's a very strange thing for me to be insecure about, because he has absolutely never failed in any way to be proud of me no matter what. And he constantly tells me he's proud of me. All the time. Sure, he tends to encourage me to do more than I'm doing even though I really physically can't, but that's more of a misunderstanding than anything else. He's a very healthy, active person who exercises rediculous amounts every week and has seemingly endless energy. It's difficult for him to understand the constant exhaustion thing. Still, no matter what decisions I make in life he's always supportive and does his best to help me out.

When I first moved back home it was hard to live here. For one thing, this house is really annoying. I know I'm supposed to be grateful for a nice place to live and all that, and I promise I really do appreciate it. But everything about it, from the stairs to the layout of the kitchen to the dark doorways between me and the bathroom at night, all really get in my way every day. It's also so incredibly open that anyone listening to music anywhere in the house is automatically disturbing anyone else who's at home. Aside from my dad's kind of bad taste in houses, he tends to make a lot of noise. It makes napping during the day on weekends more difficult, which has the potential to really screw with my energy level. When he's walking around his footsteps are heavy and you can hear them from anywhere else in the house. He opens and shuts doors, cabinets, etc loudly, and likes to shred lots of paper at once, blast classical music from the living room, put every call on speaker phone and yell into it. Noise just really gets on my nerves for some reason. And yes, I have talked to him about it, and the occasional thing has gotten better. But we're talking about a small dent here.

For awhile I was just plain annoyed at my dad because of all this. I complained to my grandmother about it, and her attitude towards the situation really made me think. She pointed out that boys tend to be encouraged to be loud, to the point where they don't know they're disturbing anyone, whereas girls tend to be encouraged to be more conscious of other people. I really think I was holding him responsible for something not his fault. And then she went on to say that you know, as long as I have someplace to live, there's no reason to be annoyed at living at home. She said that when she was my age, you lived at home until you got married, and all this pressure to move out I seem to be putting on myself isn't really necessary. And looking at it now, I think she's right.

When my parents left for their vacation, I was looking forward to having the whole house to myself. And I have enjoyed it to a certain extent, I have to admit. But at the same time, it's made me appreciate my dad more. There's something to be said for having someone ask how your day was when you get home, or even for another presence in the house even when you aren't in the same room. To be honest, this place is lonely without all that noise. And I was relying on my parents for a lot of my social interaction- I was a little lonely already, and since they left I'm really feeling it. I also have this sense that a security blanket that's been there my whole life is temporarily gone- and I feel very exposed, if that makes sense. I'm really glad for this vacation because it means I might actually get over myself and appreciate living here. And that would be a huge step forward, especially since I'm probably always going to need some form of help because of my health. I need to learn to accept that help without feeling weak or stupid on the one hand or taking more than I need on the other.

It will be nice to have them back. In the meantime, I have lots of cleaning ahead of me. XD

Friday, July 17, 2009

Running Out

Today I'm just completely beat. I had a late night. The first part was my fault- I stayed up past my usual bedtime chatting, and then when I did drug myself and try to sleep my brain was still way too active and started derailing into total creepiness. I ended up lying in the dark with my eyes open, feeling like bony hands were reaching toward me from all directions and remembering too many details from the only horror movie I have ever been dumb enough to be talked into seeing. And finally I turned on my lamp and drugged-dialed the friend who I had stayed up talking to in the first place. Which turned out to effectively distract me while my brain slowed down, and did eventually help me sleep, though I seriously don't remember what we were talking about. But as a result I ended up finally going to sleep an hour and a half into my first dose, which I took later than usual to begin with. So I woke up exhausted and nauseated this morning, and just way down on energy. And today has just been really hard. I had class which didn't help, and took the stairs on the way down which you would think wouldn't totally screw me over, but it kind of did. My dog got a really short walk tonight and I had serious trouble mobilizing myself just to clean up after dinner. Now I need to take a shower, which I got distracted and skipped last night, but I'm daunted by the idea of standing up for the few minutes it would take. You could say I'm pretty much out of spoons.

I really really hope I can sleep tonight and wake up tomorrow feeling at least better than today. My cousin is coming to visit me and I really want to have the energy to go shopping with her and catch up. But we'll see. If it's anything like today we'll just have to visit sitting down at my house.

And to top it off I now have some time-consuming homework due next week. Usually this wouldn't stress me out, as I have a whole week to accomplish it. But when showering is stressful, you know you're in trouble.

Thursday, July 16, 2009

Imaginary Therapy

We all know by now that I have plenty of issues because of Narcolepsy. So maybe it's about time to explain how exactly I manage to deal with said issues. Just to warn you, this is going to sound crazy. But then again, this illness is pretty freakin' crazy, so I see no problem with using the craziness in my favor.

I've been dealing with depression for a long time. It hasn't been easy. In my high school days I was at total rock bottom- in the I feel like dying range. I had this awful demanding schedule I could barely handle, I was terrified that I was going insane (what with the hallucinations, etc) and felt like I couldn't get help from the adults in my life because I was sure they wouldn't understand (yeah, I was at that phase of teenagerness). And so my brain came up with a really effective way of keeping me alive- it gave me an imaginary therapist.

I don't know, honestly, how much having Narcolepsy is directly tied to my extremely vivid imagination. My mind's eye, at times, has been clearer than my sense of sight. I can zone out and see the most rediculously detailed things happening in there. And when I dream/hallucinate, it is as real as my waking experience. Before medication, it was more real because the waking world was much hazier. I really needed some help back then, just to get through every day.

You know that "little voice in the back of your head", as people call it, that reminds you to shut up when you're about to say something stupid, or tells you to stand up for yourself, or tells you to keep trying even when you're discouraged? That gut feeling you get that tells you what's right even when you can't articulate why? Well, my brain turned that wiser, more grounded part of myself into a full-fledged imaginary friend. It gave him a name, gender, interests, appearance and identity slightly seperate from me. The advantage was that I was getting my own best advice in the guise of someone else, so I would actually follow it. And this therapist was in my head, so he knew what I was thinking and usually why I was thinking it, even when I didn't. And because I had completely isolated myself from any access to a non-imaginary therapist, it was the best way to deal with my problems, because now I had someone to talk to who already knew what was exactly right for me without getting to know me first because he was also me. Am I sounding insane enough yet? XD

After awhile, I actually came across a forum of like-minded imaginary self-therapy people. They came up with a slight twist on it, which they call daemonism as a reference to Pullman's His Dark Materials trilogy. It's called The Daemon Forum in case you're interested. I think it's funny (and it makes me feel slightly less insane) that other people without Narcolepsy came up with a similar thing completely independently. I firmly believe that a big imagination can get you through anything that comes your way, and I highly recommend using it to your advantage.

Nowadays I'm not on that forum anymore, but I still have my imaginary therapist. I keep thinking maybe I should try seeing a non-imaginary one, but frankly don't see the point. My internal self-therapy works very well to this date, and I honestly don't think I need anything else.

Wednesday, July 15, 2009

How Many Narcoleptics Does It Take To Change a Lightbulb?

Today was, at the least, the makings of a really amusing joke.

So I slept not so bad last night. I got up feeling, while not great, not as exhausted as the past couple of days. So I really had hope for today. No class, just needed to go grocery shopping at some point. So I figured I should do a couple other things I've been meaning to do around the house. Top on my list was investigating my ceiling lamp.

Oddly enough this takes some explaining. My parents moved while I was away in college to a newer house that, to put it nicely, I don't exactly like very much. I keep thinking it must have more to do with the fact that they moved without any input from me while I was gone and I must just resent that or something, but honestly I really just think that this house annoys me. For one thing, it makes my life more difficult in some ways- like the fact that it's three stories instead of the previous one story house, which means I get to expend a lot more energy than I was used to just to get to, say, important places like the kitchen. The laundry is, for example, two floors above my room. Which I seriously do not appreciate as I can barely lift a week's worth of laundry, much less haul it up two stories of staircase. But what really gets to me is my room.

It's supposed to be a guest room. So it's really not made to be comfortable for someone to live in for multiple years. It's tiny for a bedroom, with a tiny closet, no natural light to speak of, and it's tucked in behind the garage like it was an afterthought- Oh, hey! There's a random awkward space! Let's make it a guest room!!

Not like I'm bitter or something. XD

Anyway, the only light that it came with is the ugliest ceiling fan ever, that, to add insult to injury, was so dim that my 25 watt lamp next to my bed was brighter. So I get a tiny, dark room. Big deal, right? Well, it does actually really suck because I like to draw, and I'm going to an art school, and I need natural light to be able to see what I'm doing. And nowhere else in the house really works. Up until today I was doing my work next to the front door, which actually lets in natural light because it has random glass panes in it. That way parents were constantly stepping around me but at least I didn't have to climb stairs and could see what I was doing. Or I would haul everything up to the well-lit living room, but then I'd get up there without things and keep having to go up and down to retrieve stuff.

So recently I decided to see what kind of light bulbs were up there behind the hideous thick glass dome suspended from the fan. I figured at the very least I could get higher wattage bulbs, or maybe even just leave the hideous glass dome off to get slightly better lighting.

This turned into a major operation that ended up with me on not the steadiest latter ever, sweating from total exhaustion while trying to figure out how to get the stupid glass dome either completely off or completely back on (I didn't care which at that point), holding or dropping various parts of fan, screw-on thing, dome and lightbulbs. Of course no one else was at home or even within phoning distance. If I weren't seriously fearing for my life and limb at that point it would have been hilarious. I was feeling very weak and unsteady because the dome was heavy (well, heavy for me) and I was having trouble holding my arms up. Part of me was pretty sure I was going to fall and break something- me or fan or lightbulbs. Finally I figured out how to detach the obnoxious wooden heart (I'm so not kidding) that was hanging off the pull and was preventing me from getting the glass dome completely off. Then I sat it down and just lay down on the floor, weak with exhaustion and unable to do anything else, sweating like a pig. So how many Narcoleptics does it take to change a lightbulb? One can do it, but it might just about kill her. XD

The good news is that (after some quality couch time) I was able to get out three terrible, ancient and rediculous lightbulbs, of which only two had been working in the first place, and replace them with new, clear, stronger but still safe ones. And I'm leaving that stupid heart and glass dome off for now. For one thing, I'm not sure I could get the damn thing back on. But now my room has light! WOOHOO. Take that, stupid fan. XD I WIN.

Tuesday, July 14, 2009

Swimming Pool Mansion

I started hallucinating before I even took my last dose, which doesn't usually happen- so I knew it would be a really intense dream night last night. Sure enough, though I've forgotten a lot of the specifics now, I went through tons of places and plots with pretty much everyone I know thrown in there somewhere. The hallucination had me completely convinced I was in this swamp-like, wooded place in a boat, exploring. I remember it was getting creepy when I jerked awake to my alarm, but don't remember exactly what was about to happen, just that the alarm was a relief. It was getting dark there. Once awake, I considered leaving my lamp on as a precaution, because that sometimes helps to prevent more creepiness, but then couldn't get to sleep at all. So I turned it off, and of course had more dreams. In one of them, I was visiting three grade school friends who I do, in fact, see as a group occasionally, and last time I saw them I did travel. So it made sense. What was crazy was that I was staying at this massively gigantic mansion with three floors- one floor of hot tubs and swimming pools of different shapes, sizes, and temperatures (like twenty of them!); one floor of books, just shelves and shelves like at my college's library; and one of seating areas and nooks and like, whole living rooms all in this huge open room. The place was warehouse-like in that each floor was just an open room that was massively huge. and the upper two floors were set back a little so you could look over a railing and see the swimming pools, and next to that open space was a massive wall of just glass to let all the sunshine in. It was amazing. And there was a big staircase that connected the floors in that open, foyer-like area. My dog had come too, and I was trying to keep track of him, but the place was so open that it was hard. My mom was there in one of the living rooms, watching tv on a lazy boy couch like the one in our house. I had claimed a nook of my own where I planned to sleep that night, without a tv. My mom started watching something really creepy about crime and it was bothering me, but I didn't want to bother her so I just tried to ignore it (kind of unsuccessfully). And then I found out my friends wanted me to stay somewhere else, and I made up my mind to convince them that I was staying here because I really wanted to go swimming. At one point I got into my bathing suit and ran down the stairs, but got sidetracked because there was this hair salon with like twenty supermodels getting their hair done, and I was like, woah, that's random. XD Actually I think I've just been watching too much tv, with all the hair care commercials, haha. But then I ran and dove into one of the really cool-shaped pools and that's when I woke up.

I've been pretty exhausted today. My stomach was bothering me, so I've been carefully putting small amounts of food in it all day. Tv is basically all I've had the energy for, so that's all I've done. I'm trying to store up enough energy for my class tonight. It's 6-10, unfortunately, but I think it'll be okay because this instructor tends to let us out early. I've successfully managed night classes before; I just turn music up really loud on the drive home and sing along to keep myself alert, which seems to work pretty well. Also, it's a short drive without the traffic. I just wish I had a little more real sleep behind me so class would be fun rather than something I just have to survive.

Monday, July 13, 2009

Tired, Not Lazy

Today was just one of those days.

I thought I had slept reasonably well- I didn't remember any dreams when I woke up, which is usually a good sign because it means I didn't spend all night in creepy REMland. But I quickly realized I had way less energy today. Which would have been okay because I only had two quick errands to run, if it weren't for the pest control guy.

Periodically we have the outside of our house sprayed to keep out the bugs, and the guy who does it is really very nice. He also likes to chat. I think he really does just have an interest in people and what they're doing, which is fine. But he tends to send off an endless line of rapid-fire questions that actually require thought to answer, which I was not up for today. He had parked behind my car when I went out to run my errands, so I couldn't leave until he did, and he hadn't talked to me for a long time, so of course he started interrogating me about the last four or so years. It took all of my remaining energy just to process questions and come up with answers that didn't make me sound like a total moron. And they kept coming- so what are you doing now? Taking classes? Is that all? You mean you don't have a job or anything?

Not feeling like explaining my illnesses to yet another clueless person, I kept brushing him off this line of questions until he finally changed the subject. And eventually left, thank god. But at that point I was beat. I ran my errands and came home and crashed. I didn't get up off the couch until dinner.

It also bothered me because it seems like a conversation I keep having over and over. It just drives me completely crazy that I'm supposed to be doing so much at once all the time. When I visit relatives, it's always "Just school? Why aren't you working? Why don't you have a boyfriend? Well what else are you doing?" and I just get sick of it. Yeah, I have illnesses that slow me down a huge amount, but frankly I've decided that no one, healthy or otherwise, should have this crazy fast-paced schedule that doesn't give them a chance to slow down. It's just insane. But because that's what people expect, that's what I did for years even though my body just couldn't handle it. And now that I've finally started living a healthier way everyone thinks I'm a total slacker. I'm not making this up- my best friend keeps trying to set me up with part time jobs, and no matter how much I explain to my dad that I'm exhausted, he just doesn't think I'm doing enough unless I'm taking a full load of classes- which I can barely manage most quarters. And he gives me a hard time for lying on the couch as if resting is a waste of my time. Even my mom, who has way more health issues than I do, is working full time and travelling all over the country- and getting sicker and sicker. Soon it's going to come to a point where she'll have to quit. And then, when I confide in her my misgivings about working, she tells me I'll be fine. Thanks, mom. XD

And you know, maybe I will be fine. If people would stop hassling me about how I choose to spend what little energy I have. I don't expect them to relate or even understand- just stop acting like I'm the laziest person on Earth for not juggling eight things at once. I have enough self-esteem issues without any help, thank you. XD

I hate to end on such a complain-y note, so to make up for it I'm going to insert an adorable picture of my rediculously cute dog:

I hope that helps. XD Haha. Just look at that face.

Sunday, July 12, 2009


Last night I took a roadtrip. I had a big map of North America that showed all the highways and everything but really really small, so you had to look very carefully to use it and it was easy to get a little confused. I had some people with me who kept changing- I think they started out college friends and turned into various relatives later on. I needed to go driving through Mexico to pick someone up, and then I was going to drive around the US for awhile, visiting California, Minnesota and Georgia. Well, I actually know people who live in those states, so it kind of makes sense. Anyway, I kept getting lost a lot, but didn't really care because I was enjoying myself. We saw all sorts of interesting things, including a train that someone had turned into their house and decorated with mosaic tile in pretty blues and blue-greens. I think I need to draw that one if I can manage to. I know there were other interesting, pretty images but I don't remember them now.

I have a feeling this dream came out of missing travel. It's difficult for me to go on trips because of food, scheduled napping and Xyrem fixing my amount of sleep every night. But for a long time that didn't stop me.

When it was time to pick a college I chose one as far from my home city as possible. I wanted an adventure. I wanted a different climate and to live someplace beautiful for once in my life. So I ended up going to Carleton in Northfield, Minnesota. Seriously it's like the exact opposite of where I grew up- small town, cold climate, beautiful place. It wasn't my first adventure. Before that I had spent two weeks in London and two weeks in Rome, several trips to Colorado and Florida as a kid, a week in San Diego and a lot of places in my home state of Texas. All of that was with my parents and occasionally grandparents. My first trip without relatives was three weeks on a program in Cambridge, England with a high school friend. Looking back, I'm not sure how I managed to go all these places, especially the Cambridge trip- I was really sick. A lot of this was between onset of symptoms and diagnoses.

Carleton was very hard on me. It's a really challenging college for one thing, and when you add to all that coursework my two illnesses and all the crap they gave me at the time I really don't know how I managed to accomplish it. In my freshman year I was diagnosed with Celiac disease, and it took me most of my first two years to get the diet down and eventually figure out there was something much worse wrong with me. I finally came clean about my nightmares and hallucinations at the end of my sophomore year. You can imagine how much that freaked out my parents. So of course I ended up getting shunted around through various doctors all summer, ending up with my sleep study and finding out I have Narcolepsy. I went on Xyrem, which started to help immediately. And then, in September, I left for a ten month trip to Tokyo. Yep, I told you I was crazy.

It was during that trip that I had a lot of really important revelations. Sometimes you need to just go live on the other side of the globe for awhile to sort through everything. And I realized I needed to slow the heck down. I was trying to do too much and it was very hard on my body. I was so used to pretending to not be sick that I was stressing myself out. My last year at Carleton was basically me trying to get my life back in control. I dropped a major, much to my parents' initial anger and frustration (yes, I was trying to double major! At a really hard college, on top of everything else- what??). I took less classes and just focused on graduating. And it took so much effort to get up every day. And I ended up having to come clean about the state of my health to my professors in order to get the naps in and miss class occasionally, and I had hardly any social life because I didn't have the energy, but I still managed to graduate.

Believe it or not that was a year ago last month. Since then I've mostly stayed home. I'm still catching up on the energy. Only after a year do I feel like I really have the energy to do everything in my now much lighter schedule. I don't regret anything- I'm lucky to have travelled so much. Especially to have lived in Tokyo. I miss it so much. But I don't know when, if ever, I'll have the energy to return there. Just flying there made me sick for a week- both ways. My friends are still travelling places and inviting me along, but these days I've decided I've had my adventure for now. What's more important for me right now is to take care of myself and figure out the best possible way to do so. I'm getting there, with the addition of Remeron, more careful GF dieting and naps. Who knows, maybe when I do have the best way to care for myself and my dog figured out I can go off somewhere more interesting again. In the meantime, I'll just dream about it.

Saturday, July 11, 2009

Fear Factor

I had another interesting dream last night. And by interesting, I mean creeptastic. It featured me hitching a ride from a serial killer dude and his two henchmen who had a truck with rotting dead people piled up in the back. When they offered me a ride I was like, hmm, I wonder if this is a mistake? Oh well! And jumped into the bed of the truck, trying really hard not to look too closely or touch anything. And, haha, they totally just dropped me off where I was going, which was apparently this computer lab where people were animating a tv show. Apparently I was there to help set up for an art show or something. And then there were policemen following the serial killer around, and I was helping them escape for some reason. I ended up helping them out of a window in a really grungey bathroom. Ew.

I really don't know where the whole rotting people thing originated. But I swear to god every dream for awhile there had me finding gross skeletons everywhere. Sometimes they were in crushed up cars, or big Egyptian tombs I was for some reason visiting, or occasionally in my room various places (thanks brain). I honestly can't remember when it started, but I've had a rotten corpse phobia for ages. I must have seen one on tv at some point to start the whole thing off, but for most of my life if I caught even a glimpse of one in a sci fi show or in a movie or in a tv commercial for a show about mummies or whatever, I would end up having nightmares about it for weeks. Finally I figured out it's more about human skulls than anything else- empty eye sockets and grinning teeth. So when I took a drawing anatomy class and we had to draw pieces of skeleton every week, ending with the skull, I got pretty nervous in advance. When it came time to do the skull I could hardly make myself look at the reference in the anatomy book. I ended up crying silently through the entire drawing until it was done, and ever since then it's been easier to deal with. I can now watch Pirates of the Carribbean without covering my eyes and pictures don't so much bother me anymore.

Now if I could just get over all the other ones, haha. Needles freak me out- I feel sorry for people who try to draw blood from me because I sob hysterically for like an hour. Also worms/bugs inside food or people- if I find a bug in a piece of fruit or similar I'm across the room in under a second and refuse to go near it until someone else throws it away. It's weird because anything about like intestinal worms or similar also sends me into a total panic, but worms in the dirt or on the sidewalk don't bother me at all. I even pick them up and move them when I see one in the middle of the sidewalk because I don't want them to get stepped on. But as soon as it's in something else, phobia. Who knows. And by the way, thanks a lot Animal Planet for ruining my afternoon with your Monsters Inside Me ad.

I used to have a driving on highways phobia- I would have a panic attack just thinking about having to do it. But after the skull drawing I decided to start trying to kick my other phobias, and after driving on highways about once or twice a week for the last couple of months I totally seem to have licked it. Take that, highways!

So I dunno. Now I need a pet worm or something? Haha.

Friday, July 10, 2009

Typing While Drugged

Okay, so technically I should be writing this tomorrow. But I'm not asleep yet, and have another good story today, so I can't help myself haha.

So last night in the middle of the night I woke up really confused and dizzy and groggy. I looked down at my clock, and realized it was like an hour after my second dose. Well, that makes sense, I thought. So I picked up this book and got distracted trying to read it. It was a really easy book, but I was having a lot of trouble because my vision was all weird and blurry and foggy from being drugged. Still, I persisted for awhile. Finally I realized I was awake because I really needed to go to the bathroom. So I got up and started trying to walk in that direction, but my vision was all foggy and I couldn't stand up very well and kept losing my balance and almost falling over. Occasionally I would reach out to steady myself on the nearest furniture only to realize I was still standing next to my bed. Finally I did fall over, smacking into my bed and-

I jerked awake. Flat on my back in bed, three hours later than I had thought it was. And yeah, I still had to go to the bathroom. This time the real one. One disorienting experience.

I had a nice long phone conversation today in which I totally creeped out my friend with the teeth thing. Muahahahaha. XD

And now I need to go to bed before I end up with real Xyrem druggedness as opposed to the hallucinated kind.

Thursday, July 9, 2009

Creepy Teeth

I had a really weird/creepy experience last night in a dream- and I just feel like sharing, haha.

So the dream started out okay- I was at my cousin's house visiting her and other cousins with my dog and another puppy I had apparently adopted and was housebreaking. Basically for awhile I was just trying to keep the dogs from going inside her house and trying to navigate the food- I ended up eating watermelon and two different kinds of GF brownies. But anyway, then I was moving my tongue around in my mouth and my teeth started falling out. Like, I could actually physically feel my tongue pushing on my teeth, which then got loose one at a time until they dislodged and were attached by a single vein. And then each tooth sort of rolled around in my mouth until the vein broke and it hurt a little and I pulled out the tooth. At first I kind of liked doing it, but then I realized I was an adult and new teeth weren't going to come in. And I ran over to find a mirror to see how many had come out because it felt like about half of them. But what I mean by feeling the teeth coming out and rolling around, like I was really feeling it with my tongue. This was basically hallucination quality. And when I woke up the first thing I did was check my teeth because it felt so real that I couldn't get over the fact that not even one of my teeth had come out. I keep checking it over and over because it just felt so real. I remember it more strongly than anything I did today. How freaking bizarre can you get?

Mind Mud

Today is way better. Thank goodness. I was digging myself into a pessimistic hole yesterday, but then woke up to a much more functional state of being. I know the shifting around isn't quite done yet, but that's okay. I'm just really glad I feel safe driving today- I was running out of food. Oops. ^^; I also went to Petco to get more dogfood. It's literally three blocks from my house, so I usually take my dog at the end of one of our daily walks whenever I need to stock up on something (like frequently, treats- haha). Lately though I haven't been taking my wallet on walks because I'm starting to grow out of my jeans (which is a really good thing, as I've been underweight for ages) and it doesn't fit in my pocket very well anymore. So when I left home, in the back of my mind was the idea I should take my wallet today, only I couldn't remember why, so of course I disregarded it. Only to get to Petco's checkout line and realize my wallet was at my house. XD So we got to go there twice.

The dumb little things that don't occur to me or that I somehow forget or that I say without thinking have been with me for a long time. I used to get made fun of for it, and nowadays I do the making fun. Because most of the time it is pretty funny when you go upstairs to get something, get sidetracked and go to the bathroom only to remember later when you're back downstairs again that you actually went up there to do something else. Or you write a list and forget to bring it, or get out to your car without the car keys, etc. Basically I think it's pretty amusing that my mind is made of mush. Especially since now I know it isn't my fault.

I think the one thing that does actually bother me about the situation is how jumbled up my real memories, past dreams and random imaginings are. They're basically indistinguishable from each other as far as clarity (basically, all hazy) and sense of reality. Before medication, my dreams were all more real than real memories, and either completely horrible, tragic and terrifying or amazingly awesome and beautiful. So I could tell the mundane reality stuff apart pretty easily. Now though my dreams are more the mundane but disturbing type. And now that I have some time distance from the stronger dreams, I have trouble telling them apart from the actual memories of the time or memories from yesterday or last night's dream because it's basically all just brain soup at this point. I also feel weirdly distanced from my memories of my real life as if I'm remembering someone else's autobiography that I read or something. Only I know it's my life because there's the occasional detail that only I could possibly know. And then there's the fact that I daydream pretty uncontrollably, sometimes about a book that I'm reading, or a story I'm writing, but usually about all the things that could go wrong. If I'm driving a corner of my mind is watching me crash. If I'm walking my dog, it's about him getting run over. If I'm sitting at home it's about people breaking into the house. The list goes on and on. And these things get added to the soup of what's real and what happened or didn't happen or was in a dream last night or a daydream five minutes ago. And people wonder why I'm so insecure sometimes. Life is confusing when your brain is mush.

Wednesday, July 8, 2009

The Smaller Monster

Yeah, today was another wonky day. At least I didn't remember any disturbing dreams this morning- any at all, for that matter. That's something I really like about Xyrem.

That said, I did have nausea issues today- which happens every time I raise my dose, so it's both annoying and completely unsurprising. You know, maybe now is the time to explain my fun stomach issues that work to make life more complicated.

So I have Celiac Disease. Actually, the doctors found that diagnosis first- a year and a half before I came clean about my Narcolepsy symptoms (something about not wanting people to think I was crazy). Celiac Disease by itself isn't so bad as diseases go. For one thing, it's completely curable- as long as the patient stays on an entirely gluten-free diet, their symptoms (usually) go away and stay gone. By the way, Celiac Disease is caused more or less by your immune system attacking gluten as it enters your intestinal tract, which then causes lots of damage to the part of your intestine that's supposed to be absorbing nutrients. This causes you to then not absorb enough nutrients no matter how much food you eat. Plus it tends to cause skin problems and a sharp pain right under your stomach. It's often misdiagnosed as Chron's, IBS, or about ten other things. In case you don't know what I mean by "gluten"- the word technically only refers to a protein found in wheat, but the term has been extended to refer to similar proteins found in rye and barley that also cause Celiacs to react.

Gluten is in a whole heck of a lot of things. Any pastry or baked good that isn't GF (gluten-free) on purpose has it. Every canned soup that isn't on purpose GF has it. Most packaged, processed, shove-it-in-the-microwave food has it. So does a lot of restaurant food. So I'm not saying this diet is easy to follow- especially at first, it's very hard. But you get used to it after awhile, and eventually it becomes second nature so that you start wondering what's wrong with those people who eat gluten every day. Nowadays it's also not difficult to find GF bread, baking mixes and even frozen food at even the mundane grocery stores. Also, how much you can eat out depends a huge amount on how sensitive your body is to gluten. I have trouble even getting salads at restaurants because of small amounts of contamination- I tend to react easily. But I've known other Celiacs who could eat at most places after making sure no gluten went directly into whatever dish. Also, what a gluten reaction is like differs widely. For me, I get hazy (read: hazier than usual) and depressed and suddenly my energy level goes through the floor. I also get sharp pain in my intestine. Another thing many Celiacs have to deal with is other allergies or sensitivities. For me, soy makes me very anxious if I eat even a little bit. Also, shrimp makes my throat swell up, coconut does the same only not as bad, and kiwis make my mouth itch.

So for me, Celiac Disease is like the misquito that's always buzzing in my ear- I have to constantly swat at it to keep it from biting me, but it's not the many-toothed, sharp-clawed monster living under my bed, lying in wait until the next opportunity to make my life hell. My main complaint about being a Celiac is that I absolutely loathe and have always loathed cooking, and because I'm so sensitive I have to do it three times an effing day. There are only three restaurants in my area that I can eat at, and so I save them for the occasional friend or family outing. And the rest of the time it's cooking, cooking, cooking. At least I'm not all that bad at it these days. I have a feeling it would be alright if I weren't so damn tired all the time. To top it off, taking Xyrem means I'm also forced to eat low-salt most of the time. Which makes my food pretty boring, unfortunately, and I've tried to fudge the low salt thing only to have serious too-much-salt issues.

So long story short, my stomach hates me. But I've accepted that and moved on. Now if I can just get my attitude towards the bigger monster in order, I'll be set.

Tuesday, July 7, 2009

Nap Assisting

Yeah, won't screw me up as much, haha. Never mind. I was basically useless today and spent most of the time napping or watching tv. At least I had my nap buddy with me. I've decided that my dog is a professional Nap Assistant. Basically he naps with me so that I feel less like a loser for needing to sleep a lot. Having a dog around is such a massive improvement in life. He injects a healthy amount of adorableness and company into my mostly hermit-like existence. And it is so refreshing to have someone around who not only doesn't think I'm lazy or unproductive or whatever for laying down, but also doesn't pity me for it or worry. Thank god for nonjudgemental animals.

Well, I still think raising it slower was the right thing to do. I'm just starting to wonder how next quarter will go. I'll have classes starting next week, and hopefully medication issues won't complicate things too much. I doubt it will matter. If there's one thing I'm incredibly good at, it's hiding my issues and pretending my way through higher education. XD If only I knew how to translate that into a job setting. I think I have so much trouble with the very idea of getting a job because my few previous experiences were pretty bad and awkward, mostly because those required me to be focused and paying attention, which (obviously because of my Narcolepsy) is something I'm definitely bad at. So I made a pretty inadequate office assistant, TA, and English tutor, despite trying hard. I sort of fudged my way through it all somehow and ended up quitting as soon as I could. I'm not sure where to go from here when it comes to a job- I'm too sleepy/exhausted for retail or other on-your-feet jobs, too zoned out for phone answering, and anything that requires sitting for long periods of time will make me fall asleep. Talking to people is awkward because I zone out. I'd love to work with dogs or something, but I'm too easily tired out- I can barely keep up with my dog, and his body is like 3 inches off the ground, haha.

Luckily for now I can just keep taking classes and live at home. And I'm covered by my dad's insurance for another year and a half. So I really don't need to worry about it yet. However, I'm going to worry anyway, damn it.

Tomorrow should be fun. The plan is to hang out with my grandparents. I like doing things with them partially because they also need to rest a lot. When I go to their house I bring my dog and we all group nap. :D But besides that we of course just really enjoy each other's company.

Not So Bad

I woke up this morning and thought, hey, that wasn't bad! And then remembered the gorey and slightly disturbing dream I had in which I was a really macho buff guy with lots of tattoos (which is funny because that's like the exact opposite of how I look) who was trying to pretend to be harmless while sneaking past oppressive intelligent dinosaurs who he was supposed to assassinate without getting caught in this weird multi-planet world with Stargates. And this dude/I had a team of people who looked oddly like characters from Ouran High School Host Club. It was frustrating and weird and disturbingly bloody. o.O Well, at least I got to miss the hallucinating. But that probably will happen at some point. I vaguely remember having another dream in there somewhere about figuring out I was in a dream and thinking it was going to get scary, but it never really did. But I was in my old room which is always a bad sign. (Digression time!)

For most of my life, from when I was like 7 to when I was 22, my parents (and me until I went away for college) lived in the same little old house. When I was little I did sometimes have really vivid and awful nightmares, but it got really bad around 12 or 13. I wasn't diagnosed with Narcolepsy until I was- 20? Yes. So my bedroom, for 7ish years, was this place of terror. I had countless terrifying dreams in which I would "wake up" in my bedroom, and then there would be someone moving around in my bathroom or people looking in through my windows or something moving in the shadows. Or there would be cockroaches all over my bed or I would get up and look into the living room and this creepy water would be slowly rising, or I would find skeletons in my closet (that saying has never amused me, thank you very much), or there would be gunmen outside all the windows and if they saw me they would shoot. Or someone would come in and I would have to find a way to hide or sneak away or else I knew they were going to kill me. It almost always started in my room, with me waking up in my bed (because then I would think it was all real- thanks brain -.-) and then eventually I would get so afraid I would suddenly jerk awake, but be paralyzed and hallucinate. So then I would really be seeing my bedroom, but instead of just my room I would see shadow people doing things or looking in or touching me, and I would hear sounds like keys jangling and scratching sounds, creaking, or whispering. And I could feel people touching me, sometimes gently and sometimes violently. This kind of hallucination is called hypnopompic. I've also had the hypnogogic kind, on going to sleep, but those weren't usually as bad for me.

So you can see why being in my old bedroom was potentially a bad sign. The Xyrem usually keeps those things away, which is why I'm not going to give it up if I can possibly avoid it, even though it gives me stomach issues and makes my diet more annoying. Which is yet another long story.

I do seem to be more awake today though. I've decided (since I'm not going back to my doctor for three months) that I might as well take my dose to a halfway point before raising it the rest of the way, just to make it easier on myself. So it'll take a little longer to know what the effects of the maximum dose are, but in the meantime it might screw me up less.

Monday, July 6, 2009

The Inevitable

So I've been toying with the idea of blogging for awhile now. I'm definitely self-centered enough (no offense intended to other bloggers- I'm only speaking for myself here) and have many issues that I need to work out. Plus I like writing, freaking people out and joking about stuff that technically isn't funny. What stopped me from doing it before (except for one long trip, which I knew people would be interested in reading about) was the fact that my life is basically a. sleeping, b. complaining, and c. cooking even though I hate cooking. And I was like, no one wants to read about me struggling through life because my immune system has an attitude problem. But then while searching around online I came across other people blogging about similar things, really got into reading them, and it ocurred to me that maybe there is, in fact, an audience for this. Even if it is just me, haha.

As you might have guessed, I have a huge backstory. Which I'm totally not interested in typing up in one post or even several. So I've basically decided to just drop bits of backstory whenever I feel like. Otherwise the first posts would be way too much work and require too much energy to accomplish, which, if you know much about either of my illnesses, I do not have much of a supply of. By the way that was the worst sentence ever. But whatever. It's late for me (9 pm) therefore I do not promise coherence. To drop a vague summary on you- kid with awesome life hits puberty, gets totally screwed for 7 years, gets diagnosed for awhile, gets medicated, and then eventually (three years-ish later) realizes that she is still screwed and may in fact always be screwed. And here I am now.

I've spent the last three years adjusting my meds around and adding or subtracting them. At this point I'm about to get up to the highest dosage I can of the only combination that even vaguely works. I'm raising my Xyrem again tonight, which for me will mean almost a month of general sleep cycle madness before I settle out and get to see if I can come out of this with enough energy to have a life- or don't, in which case I need to do some serious life plan rethinking. But I'm not going to cross that bridge till I come to it. For anyone who for some reason decides to read this, the next few weeks means you get to hear about whatever nasty dreams, hallucinations while paralyzed, upset stomach nonsense and fun medication-caused anxiety I get to to experience. I'm pretty used to the routine by now- raise the dose, go crazy for two or three weeks, settle out and feel quite a bit better. There is a good reason I take this medication despite the crap that happens when I change doses- it does vastly improve life. But that's a story for another day, when I'm not getting rambly because it's almost my bedtime.