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.
Friday, July 31, 2009
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.
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.
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
Break-In
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
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.
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.
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.
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!
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.
REALLY AWESOME things:
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
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.
REALLY AWESOME things:
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.
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.
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