Okay, so I know there's some pretty weird stuff I've been blogging about lately, related to narcolepsy and not. But this latest suspicion of mine really takes the (GF and soy-free) cake.
So we all grew up knowing two things about ice cream: it's delicious, and it's bad for you. I mean, frozen cream with massive amounts of sugar in it seems to be, according to common sense, bad for you, right? I mean, it's basically sugary fat. Can you get more unhealthy, really? Or so I thought...
For four years or so I was quite underweight, thanks to Xyrem and a complete lack of interest in cooking (a killer when you're on a special diet). My lowest weight was 92 lbs, and though I am a small person, I was around 20 lbs too light. I could feel it. My bones were sticking out and I was cold all the time because I had no fat whatsoever. I felt physically weak. I had a hard time finding small enough bras for awhile, and I was wearing size 0 jeans (which were a little loose). Many people say they'd kill for that, but I felt horrible. I felt so unhealthy. I had no energy, which, when you already have narcolepsy to contend with, basically made life impossible. I felt like one of those skeletons that show up all the time in my dreams, crumpled up on the couch.
Finally I had a falling out with my neurologist because I was sick of being a stick figure, and the Xyrem had mostly stopped getting me sleep anyway. So I stopped taking it and slowly started to recover the weight I needed. I immediately felt better, learned how to cook (what a difference an appetite makes), and started eating a ton of really healthy, homemade food every day. I'm sure the story would have been different if I'd started eating junk food or even GF frozen dinners like I had before, but on all the veggies I gained weight back slowly and flesh started showing up in areas where it was needed. A year later, you couldn't see my hip bones anymore and I actually had curves again. Soon after, I leveled out at around 107 lbs and felt so much healthier and stronger. Even so, I felt cold a lot of the time and like I needed a little bit more meat on my bones. I mean, winter in Iowa really kind of requires extra padding.
Around that time I started noticing how often I was craving cheese. I've always really liked cheese, but I had started putting it on everything. My fiance didn't mind; he loves cheese too, the more the better. Since our diet contains mostly vegetables, fruit and occasionally fish or chicken, I kind of figured I was craving dairy since it's got a lot of protein in it. I didn't worry too much about it and kept piling on the cheese. And then I started craving cheese and ice cream. I hadn't had ice cream in over a year; I tend to avoid sugar products because once you stop eating them, small amounts make you anxious and kind of crazy. But this craving was pretty over the top. So I got a little carton of Haagen-Dazs to see how it went. I like that brand because it's pure ice cream, none of this modified-food-starch-whatever-chemicals nonsense, and you can tell because it tastes insanely good, like real food. Plus a lot of the flavors are gluten-free, and actually gluten-free- no contamination at all. The same goes for soy. Some flavors have it, but only where necessary, and as long as I read to label I haven't had a problem.
So I thought, okay, it's just for a treat this week. But the craving kept up, and suddenly I was gaining weight again. I went from 107 to 113 in a week and the only difference was the ice cream. Alarmed, I stopped buying it. I've heard it's easy to get overweight if you have narcolepsy, so I'm wary. After a week without any in the freezer, I dropped back down to 107, and realized I was suddenly cold all the time again. Okay... was my body telling me that ice cream is good for it? That it needed ice cream to round out my healthy diet? o.O To have enough body heat?
So this turns my idea of health food upside own. I find myself thinking, maybe it isn't that some foods are always bad or always good for you. Maybe being healthy is about paying attention to what your particular body needs, watching how you feel. Maybe it isn't all so clear-cut. The rest of life isn't, so why would food be? Our bodies are amazing, beautifully constructed, and complex. Maybe you can't just rely on other people's advice, even that of the experts. Maybe you have to listen. The more I listen to my body, the more interesting things I discover.
I don't know what's weirder- my body legitimately needing ice cream to maintain the proper weight or the irony of something cold ultimately making me warmer. Now I keep some in the freezer all the time and pay attention to my intuition. If my body says it wants ice cream, I eat some and feel better. If I feel I don't need it then I avoid it. Now that the weather is slowly warming up I've been needing it less. I don't have to think it through. I just have to pay attention.
Showing posts with label bio. Show all posts
Showing posts with label bio. Show all posts
Friday, March 18, 2011
Saturday, February 5, 2011
Modern Day Werewolf
All of my life I've felt like a wild animal in a cage, pacing around the walls, looking for the reason why. As a child I did everything I could to be anything other than a human. I was a dog, every species of dinosaur I knew, a wolf, a lion, even a cat if my playmates insisted on playing house instead of some more interesting adventure game. I refused to be human. Anything felt more right than that.
When I hit my teens the feeling became even more insistent. I had grown out of pretend games, but I felt like my real life was one. The people directing my life wanted only the best for me, but they didn't allow me to shine through all their plans for me. I felt lost. I didn't know who I was- only that I wasn't anywhere near who my parents wanted me to be, and I didn't know how to proceed.
The feeling of disconnection only grew. I was tired. So much more tired than seemed reasonable, or allowed. Every day in high school I was wrung out, and keeping up my grades took so much of my focus that I had literally no extra minute for things that might repair my soul. I felt broken. I felt wrong.
A lot of teens seem to feel bad about their physical body. Some of them stop eating, some find other ways to physically harm themselves. I did neither. Instead I would imagine what I wished my physical form would be. I would concentrate on having a bushy tail and pointed ears. I could practically feel a muzzle coming out of my face. An invisible and intangible coating of fur would cover me. And this began to happen when I wasn't concentrating, even when I didn't want it to. Against my will, my fingers began to fold over whenever I was relaxed, becoming the closest thing to a paw that a human hand can. I would lie down to take a nap and wake up on my side, "paws" stretched out, knees bent, shoulders crammed as close to each other as physically possible, draped over the furniture like some sort of Great Dane.
At first, the way my imagination took the concept and ran freaked me out, but it felt so right- so much more "me" than when I was upright, pretending to be a normal human being. I had recently discovered the internet (as it was relatively new, lol) and got brave enough one day to search the word "werewolf". What I found changed my life and my feelings about myself.
It turned out it wasn't just me, that lots of other people (though obviously still a small minority) had similar sensations of feeling not human. And they weren't all teens, either- many of them were older. The term to describe this unique kind of body dysphoria is "therianthropy", and those who experience it call themselves therians. Many of the sensations described, such as the feeling of "phantom" limbs (for example, a tail), sudden shifts in your perception of your mental image (known as a "mental shift") and the feeling of being in the wrong body were all things that had already become very familiar to me by happening to me on a regular basis.
On the advice of other therians, I began to research animals, trying to figure out what I was. Many of us, for reasons unknown, are some species of wolf, though there are plenty of other types, too (big cats are also common). I still remember the shock I felt the first time I saw a photo of a Mexican Wolf. I had been startling myself for years passing by mirrors- it used to really spook me to see a human face staring back at me, and I would have a moment of who is that? The second this photo loaded, it was like I was looking in a real mirror for the first time. As a matter of fact, the exact photo in question is now my profile picture on this blog. It looks more like me than anything I've ever seen. Just like most people feel recognition seeing a photo of their own face, I only feel that recognition when I see my wolf self. This is the main reason I draw myself as a wolf- to do otherwise would be like drawing somebody else.
As my sense of being a wolf has persisted over the years, I've encountered plenty of theories as to why. As a teen on various forums I found that many of my fellow therians believed that they were whatever species in a past life and the feelings of being that species had carried over. Another popular theory was that they had the soul of a non-human animal and it had- either by mistake or by design- been inserted into a human body instead. Raised an atheist with two scientist parents, neither of those theories particularly appealed to me. If we are reincarnated animals, why the bias towards certain powerful forms? If I don't believe in a higher power who spends a lot of time inserting souls into bodies, then how can I believe that he or she made a mistake? And so I've come up with my own ideas, based on my own worldview. I used to think of therianthropy as some sort of psychological disorder and assumed that the wiring in my head was somewhat wrong. Having given up the pessimism inherent in that theory, however, I've begun to think of it as more of a result of many factors. The sense of unreality I sometimes get (as well as the mental haze I lived in for most of ten years) I know now to be caused by narcolepsy. My desire to connect with other species, and the way this was denied me for most of my life, probably also contributes, as does my extremely vivid imagination. I've always been an artist and a caretaker by nature, and have felt a bit out of place with our society's expectations of me, making it difficult for me to relate to what a human is "supposed" to be. Plus, I don't feel that it's a huge jump behaviorally from human to wolf. We have similar social structures, hunting tactics, basic needs, and complex emotional lives. I think it's fairly common to see ourselves in wolves- so why couldn't I see a wolf in myself?
It may seem out there, but all I know is that ever since acknowledging this side of me I've felt much closer to who I am. I still get my "paw hands" all the time and feel like I have wolf ears on top of my head. Fortunately, my fiancee thinks it's adorable, and my friends have always accepted it as a weird me-quirk (one of them happens to be a Siberian tiger therian). While my parents and other family members have never directly found out, I doubt any of them would be in the least bit surprised. If you know me, you know I'm wolfish, whether I've told you about it or not.
When I hit my teens the feeling became even more insistent. I had grown out of pretend games, but I felt like my real life was one. The people directing my life wanted only the best for me, but they didn't allow me to shine through all their plans for me. I felt lost. I didn't know who I was- only that I wasn't anywhere near who my parents wanted me to be, and I didn't know how to proceed.
The feeling of disconnection only grew. I was tired. So much more tired than seemed reasonable, or allowed. Every day in high school I was wrung out, and keeping up my grades took so much of my focus that I had literally no extra minute for things that might repair my soul. I felt broken. I felt wrong.
A lot of teens seem to feel bad about their physical body. Some of them stop eating, some find other ways to physically harm themselves. I did neither. Instead I would imagine what I wished my physical form would be. I would concentrate on having a bushy tail and pointed ears. I could practically feel a muzzle coming out of my face. An invisible and intangible coating of fur would cover me. And this began to happen when I wasn't concentrating, even when I didn't want it to. Against my will, my fingers began to fold over whenever I was relaxed, becoming the closest thing to a paw that a human hand can. I would lie down to take a nap and wake up on my side, "paws" stretched out, knees bent, shoulders crammed as close to each other as physically possible, draped over the furniture like some sort of Great Dane.
At first, the way my imagination took the concept and ran freaked me out, but it felt so right- so much more "me" than when I was upright, pretending to be a normal human being. I had recently discovered the internet (as it was relatively new, lol) and got brave enough one day to search the word "werewolf". What I found changed my life and my feelings about myself.
It turned out it wasn't just me, that lots of other people (though obviously still a small minority) had similar sensations of feeling not human. And they weren't all teens, either- many of them were older. The term to describe this unique kind of body dysphoria is "therianthropy", and those who experience it call themselves therians. Many of the sensations described, such as the feeling of "phantom" limbs (for example, a tail), sudden shifts in your perception of your mental image (known as a "mental shift") and the feeling of being in the wrong body were all things that had already become very familiar to me by happening to me on a regular basis.
On the advice of other therians, I began to research animals, trying to figure out what I was. Many of us, for reasons unknown, are some species of wolf, though there are plenty of other types, too (big cats are also common). I still remember the shock I felt the first time I saw a photo of a Mexican Wolf. I had been startling myself for years passing by mirrors- it used to really spook me to see a human face staring back at me, and I would have a moment of who is that? The second this photo loaded, it was like I was looking in a real mirror for the first time. As a matter of fact, the exact photo in question is now my profile picture on this blog. It looks more like me than anything I've ever seen. Just like most people feel recognition seeing a photo of their own face, I only feel that recognition when I see my wolf self. This is the main reason I draw myself as a wolf- to do otherwise would be like drawing somebody else.
As my sense of being a wolf has persisted over the years, I've encountered plenty of theories as to why. As a teen on various forums I found that many of my fellow therians believed that they were whatever species in a past life and the feelings of being that species had carried over. Another popular theory was that they had the soul of a non-human animal and it had- either by mistake or by design- been inserted into a human body instead. Raised an atheist with two scientist parents, neither of those theories particularly appealed to me. If we are reincarnated animals, why the bias towards certain powerful forms? If I don't believe in a higher power who spends a lot of time inserting souls into bodies, then how can I believe that he or she made a mistake? And so I've come up with my own ideas, based on my own worldview. I used to think of therianthropy as some sort of psychological disorder and assumed that the wiring in my head was somewhat wrong. Having given up the pessimism inherent in that theory, however, I've begun to think of it as more of a result of many factors. The sense of unreality I sometimes get (as well as the mental haze I lived in for most of ten years) I know now to be caused by narcolepsy. My desire to connect with other species, and the way this was denied me for most of my life, probably also contributes, as does my extremely vivid imagination. I've always been an artist and a caretaker by nature, and have felt a bit out of place with our society's expectations of me, making it difficult for me to relate to what a human is "supposed" to be. Plus, I don't feel that it's a huge jump behaviorally from human to wolf. We have similar social structures, hunting tactics, basic needs, and complex emotional lives. I think it's fairly common to see ourselves in wolves- so why couldn't I see a wolf in myself?
It may seem out there, but all I know is that ever since acknowledging this side of me I've felt much closer to who I am. I still get my "paw hands" all the time and feel like I have wolf ears on top of my head. Fortunately, my fiancee thinks it's adorable, and my friends have always accepted it as a weird me-quirk (one of them happens to be a Siberian tiger therian). While my parents and other family members have never directly found out, I doubt any of them would be in the least bit surprised. If you know me, you know I'm wolfish, whether I've told you about it or not.
Tuesday, December 8, 2009
Moving Halfway Across the Country Again
Alright, so I've totally been neglecting this blog lately. The main reason is that my life is once again rearranging itself. Definitely in a good way. My girlfriend got home fine, but we both started pining pretty badly the second she had to leave, which led to planning a trip for me to visit her, which then turned into me taking my dog and moving up north for the winter until she finishes getting certified and can move down here. Yes, me moving up north. For the winter. XD
I spent three years of college up in Minnesota, and being a native Texan it made a pretty big impression on me. At first it was pretty frightening, as winter came in November (instead of maybe pretending to show up in January) and the temperature dropped from "chilly" (65) to "freezing" (45), then bypassed "#$%@ing cold" (20) and kept right on dropping until it was hitting those pesky negative numbers that my poor Texan self had never even heard of before. Every one of those three winters had me wondering, around April when you'd think some hint of spring would have shown itself already and instead the ice and snow was barely even thinking of starting to melt, what the hell am I doing here??
It was hard. Having grown up with school canceled if the temperature hit freezing (like once every five years lol), walking to class buried in layer upon layer of clothing and still feeling like my face was going to fall off in the negative degree windchill was not fun. After awhile I did get used to some things: I learned to appreciate snow and layering, and I loved walking outside to see a world worthy of Christmas postcards every day. I started to refer to 50 degrees as "nice", especially in the spring, and there was something amazing in the total silence and stillness in a frozen landscape. That said, a winter in the Midwest still daunts me. I'll be somewhere slightly warmer (in theory) than where I was. I also have the accumulated knowledge of my three years behind me, if I turn out to have retained it, that is. But it's going to be worth it to be with my girlfriend.
It should work out well, because it means we can start our exchange of life skills that will make both of our lives better: she cooks, and I keep her life organized and clean. That sounds like an awesome deal to me, because I'll do anything to not have to cook (which she really enjoys, the crazy person), and she could really use some help with organization, the one thing I'm really good at besides drawing. She constantly loses things, the poor girl. Anyway, I'm pretty psyched. And it'll mean not having to drive anymore, thank god, because she'll do the driving when we need to go somewhere. That by itself is worth moving halfway across the country.
I spent three years of college up in Minnesota, and being a native Texan it made a pretty big impression on me. At first it was pretty frightening, as winter came in November (instead of maybe pretending to show up in January) and the temperature dropped from "chilly" (65) to "freezing" (45), then bypassed "#$%@ing cold" (20) and kept right on dropping until it was hitting those pesky negative numbers that my poor Texan self had never even heard of before. Every one of those three winters had me wondering, around April when you'd think some hint of spring would have shown itself already and instead the ice and snow was barely even thinking of starting to melt, what the hell am I doing here??
It was hard. Having grown up with school canceled if the temperature hit freezing (like once every five years lol), walking to class buried in layer upon layer of clothing and still feeling like my face was going to fall off in the negative degree windchill was not fun. After awhile I did get used to some things: I learned to appreciate snow and layering, and I loved walking outside to see a world worthy of Christmas postcards every day. I started to refer to 50 degrees as "nice", especially in the spring, and there was something amazing in the total silence and stillness in a frozen landscape. That said, a winter in the Midwest still daunts me. I'll be somewhere slightly warmer (in theory) than where I was. I also have the accumulated knowledge of my three years behind me, if I turn out to have retained it, that is. But it's going to be worth it to be with my girlfriend.
It should work out well, because it means we can start our exchange of life skills that will make both of our lives better: she cooks, and I keep her life organized and clean. That sounds like an awesome deal to me, because I'll do anything to not have to cook (which she really enjoys, the crazy person), and she could really use some help with organization, the one thing I'm really good at besides drawing. She constantly loses things, the poor girl. Anyway, I'm pretty psyched. And it'll mean not having to drive anymore, thank god, because she'll do the driving when we need to go somewhere. That by itself is worth moving halfway across the country.
Friday, November 20, 2009
Anger Management
I don't look particularly threatening. I mean, I'm a short and skinny person who looks about 14 despite being about ten years older, who has a fondness for animated movies and likes to belt out Backstreet Boys lyrics while driving along in her car. I have a nice collection of stuffed animals for God's sake, and the silliest looking little dog ever. I've been described as cute in multiple languages, and adorable, and people I don't know are constantly asking me what grade I'm in.
So you would think I would be more or less harmless, but that just means you haven't seen me when I get angry.
It doesn't happen very often. Most of the time I take things in stride, or else get upset rather than angry. The result of this, though, is that it slowly builds up, so that when I do explode I don't see it coming. It seriously seems to me, after the fact, that it comes up suddenly out of nowhere and the anger just takes over. I start shouting and throwing things, and storming around and kicking the furniture. It's a little frightening for me because I'm used to being in control of myself, avoiding any and all conflict by just not saying anything, but then I turn into this total monster for a good five minutes every couple of months.
Most of the time it doesn't effect anyone else. I keep it hidden, try to contain it, to get out later when I'm alone and can throw my sandals at the dresser or rip pieces of paper into tiny shreds. But two days ago I was talking to my girlfriend on the phone when it happened, and I lost control of myself again. I think it flared up around her because we're so close, and I feel safe around her almost like I'm alone, if that makes sense. I'm very, very lucky that she didn't dump me then and there. There is no excuse for my behavior. Plenty of reasons, but none of them justify the hurt I inflicted with my outburst. Part of it was definitely related to frustration with my parents at the moment. Part of it was probably being hungry, or exhausted, or the fact that my dad came home early without warning that day, interrupting my peace and quiet. It had to do with my girlfriend recounting her bad day, and me being upset that her day was bad too. But whatever the reasons for it, it was wrong and I hurt the person I love the most.
I've always made excuses for it, because I do have a lot of good reasons to be angry, not the least of which is having a misunderstood medical condition that makes me look like an idiot a lot of the time. I've had shouting matches with my parents before that hurt everyone involved, so it isn't a new issue. But now is the time to find a better outlet, or at least gain enough control over my emotions to not hurt someone else. For one thing, I'm planning on figuring out how to spot the buildup before the explosion- that way I give myself time to get away from anyone else before I let it all out. I also need to find a way to let it out more frequently in smaller amounts, because I think that would make my life better anyway- tucking it all away can't be good for me. I'm glad, to a certain extent, that something happened to bring the whole thing into perspective, even though it sucked. Now at least I can work on it.
So you would think I would be more or less harmless, but that just means you haven't seen me when I get angry.
It doesn't happen very often. Most of the time I take things in stride, or else get upset rather than angry. The result of this, though, is that it slowly builds up, so that when I do explode I don't see it coming. It seriously seems to me, after the fact, that it comes up suddenly out of nowhere and the anger just takes over. I start shouting and throwing things, and storming around and kicking the furniture. It's a little frightening for me because I'm used to being in control of myself, avoiding any and all conflict by just not saying anything, but then I turn into this total monster for a good five minutes every couple of months.
Most of the time it doesn't effect anyone else. I keep it hidden, try to contain it, to get out later when I'm alone and can throw my sandals at the dresser or rip pieces of paper into tiny shreds. But two days ago I was talking to my girlfriend on the phone when it happened, and I lost control of myself again. I think it flared up around her because we're so close, and I feel safe around her almost like I'm alone, if that makes sense. I'm very, very lucky that she didn't dump me then and there. There is no excuse for my behavior. Plenty of reasons, but none of them justify the hurt I inflicted with my outburst. Part of it was definitely related to frustration with my parents at the moment. Part of it was probably being hungry, or exhausted, or the fact that my dad came home early without warning that day, interrupting my peace and quiet. It had to do with my girlfriend recounting her bad day, and me being upset that her day was bad too. But whatever the reasons for it, it was wrong and I hurt the person I love the most.
I've always made excuses for it, because I do have a lot of good reasons to be angry, not the least of which is having a misunderstood medical condition that makes me look like an idiot a lot of the time. I've had shouting matches with my parents before that hurt everyone involved, so it isn't a new issue. But now is the time to find a better outlet, or at least gain enough control over my emotions to not hurt someone else. For one thing, I'm planning on figuring out how to spot the buildup before the explosion- that way I give myself time to get away from anyone else before I let it all out. I also need to find a way to let it out more frequently in smaller amounts, because I think that would make my life better anyway- tucking it all away can't be good for me. I'm glad, to a certain extent, that something happened to bring the whole thing into perspective, even though it sucked. Now at least I can work on it.
Wednesday, November 4, 2009
The Best Girl in the Entire World
I'm not sure where to start on this one, because there's so much history and depth and communication and plain old sappy love involved. So I think I'll settle for the simple explaination: I found a girl.
We've been best friends since we met five years ago at Carleton. Over the years we've been through a lot together and we've grown very attached to each other. We have never really had secrets from each other- she's always been the one person I could tell everything to. Not even every crazy little detail of the inner workings of my messed up brain have scared her off, which is impressive. We have always shared a very deep bond.
During our senior year at Carleton we realized we were completely in love with each other. The timing was unfortunate and a lot of stress and depression (on both sides) eventually caused it all to crash. Since then our feelings toward each other never went away. We got over ourselves and our close friendship continued after graduation, though we were both afraid of broaching the subject again. Despite living across the country from each other we actually kept up communication so well that our relationship got even stronger over the past year.
A month ago we decided we might as well be officially dating again since we were practically dating already anyway, haha. And since then we've both been so much happier about life. I can't even begin to describe how much I love her and I'll spare you the ridiculous amount of sappiness that could fill about eight entries on here, easily. I'll just say that life is good, my girlfriend is awesome, and leave it at that.
We've been best friends since we met five years ago at Carleton. Over the years we've been through a lot together and we've grown very attached to each other. We have never really had secrets from each other- she's always been the one person I could tell everything to. Not even every crazy little detail of the inner workings of my messed up brain have scared her off, which is impressive. We have always shared a very deep bond.
During our senior year at Carleton we realized we were completely in love with each other. The timing was unfortunate and a lot of stress and depression (on both sides) eventually caused it all to crash. Since then our feelings toward each other never went away. We got over ourselves and our close friendship continued after graduation, though we were both afraid of broaching the subject again. Despite living across the country from each other we actually kept up communication so well that our relationship got even stronger over the past year.
A month ago we decided we might as well be officially dating again since we were practically dating already anyway, haha. And since then we've both been so much happier about life. I can't even begin to describe how much I love her and I'll spare you the ridiculous amount of sappiness that could fill about eight entries on here, easily. I'll just say that life is good, my girlfriend is awesome, and leave it at that.
Saturday, September 5, 2009
You don't UNDERSTAND ME!!11one!!1!
Lately I've had to cut back a lot. I'm taking three classes instead of my usual four, which was already less than most students' five, because I dropped my online class before it even began since I could tell I didn't have the energy to do well in it. I've been putting my dog on the treadmill instead of walking him twice a day because that got to the point where it was killing me. I've stopped leaving the house except for classes- I've been avoiding driving as much as possible because I'm just too tired. I've been letting my parents do errands for me a lot more than I was, and I'm having trouble mustering the energy to cook anything even vaguely complicated. I've also been very careful about socializing, limiting my already very unexciting social life to avoid wearing myself out too much to keep up in my classes. But I think the most frustrating thing about it is how the people in my life are reacting to the changes.
Mostly it's the people who keep wanting to see me that are doing it. And I appreciate it to a certain extent because it means that they really like me and care about me. But having to give that same excuse of "I'm too tired right now" is getting really old, and I'm sick of finding new ways to brush them off as they try to convince me to do it anyway.
It is definitely something I expected from one of my close friends from high school, as she's quite healthy and has never understood what it's like to be so exhausted that you can't just go do stuff anyway. We've had an understanding for a long time that she's just not ever going to get me. After all this time she has learned to be nice about it at least, and I managed to convince her that I feel way too crappy to do more than have dinner with her tomorrow. She wanted to go see a movie and then have dinner, not getting (until I explained) that even though I'm sitting down the whole time, movies are loud and I have to focus on them so they actually tire me out a lot.
It's also something I expected from my cousin, who keeps trying to get me to drive out to her house to visit. I would love to, but it's far away and involves highway driving, plus she has this habit of asking me at the last minute. Visiting with her is also tiring because we tend to talk a lot, she has two young kids and she always wants us to go somewhere and do something. All of that together is too much right now, to the point where I'm not sure I'd be able to safely drive home. And sleeping over would mean figuring out multiple meals and planning ahead a lot. Luckily for me she occasionally comes in my direction, so I get to see her, and she's very nice about it when I refuse her invitations.
This level of not really getting it was not something I expected from my mom, who knows all about the whole chronic illness thing as she has at least ten autoimmune diseases herself. But unlike me, my mom has a tendency to push her way through it all despite the consequences, doing as much as possible every day and just feeling completely awful all the time. I decided a couple of years ago, when I dropped a major in my last year of college and cut back on my courseload because my body simply couldn't handle it, that I'm not going to do that to myself. And since then we've had distinctly different strategies of survival- mine to take it slow, and hers to shove through and do it all anyway. So maybe I should have expected this after all.
Well, technically it started with my aunt. My mom and her two sisters are going to fly out to my cousin's baby shower, and two other cousins will be there also. So of course one of my aunts decided it would be really cool if I came on the trip too. Which, to be fair, is true- it would be awesome and I'd love to see these people. At first I was thinking it might be worth doing, and my mom started encouraging me by suggesting all these ways we could make it work- we'd get a hotel with a kitchen in the room, we could cook in there, she and I could stay back and rest part of the time, we could look up gluten-free restaurants, etc etc. But when I really thought about it I began to realize that this just didn't make sense. I would end up having to fly pots and pans and a toaster over there, it's in the middle of a quarter which means I would becoming back totally drained and have to get right back into classes, I would be entrusting my already fragile state to restaurants I've never tried before that could be dubious, I would have to drive my dog down to my grandparents' beforehand and then go pick him up as soon as I got back, then deal with behavior issues because the rules aren't as strict over there, plus the simple fact that I'm not even sure I would get much out of the trip because I'm so damn tired. It took me several tries to convince my mom that I really shouldn't go, which frustrated me because she of all people should realize that yes, I have serious limitations here. If I do anything outside of my careful regulated routine I end up feeling worse, and I prefer to be cautious. I used to push myself way farther than I could handle every day and it sucked.
To be fair, taking the occasional chance and just doing something anyway is rewarding sometimes. Like my trip to Minnesota to visit a college roommate. But that just about flattened me and I was feeling it for weeks, even though towards the end of that visit I was more careful. And that was during a break.
The other thing that frustrates me a bit is how when I try to talk to my mom about my concerns about my future career, she acts like I shouldn't be worrying about that because she thinks I'll be feeling better by then. The thing is, I'm really not sure where she's getting this idea. We've found the top dose of Xyrem that I can handle, and the right antidepressant to improve my mood and make the side effects go away. This is a vast improvement on how I've felt any time in the last ten years. And it really is a great achievement. It's taken over three years of adjustment to get here, and it was worth all the hassle. However, this is it. This is how I'm going to feel for the next good long while, you know? Barring some sudden breakthrough that cures Narcolepsy, where I'm at now is where I'll be. But my mom seems to have some kind of nebulous, imaginary future in her head in which I'm feeling way better and can actually hold down a job. Which I'm really not sure is totally in keeping with reality, to be honest. And the subject has a tendency to get suddenly changed when I'm trying to clarify the situation. But you know, if it was my daughter I'm not sure I would want to consider it either. So it's not like I blame her or anything. But it is hard when the only one who might get it, doesn't.
Mostly it's the people who keep wanting to see me that are doing it. And I appreciate it to a certain extent because it means that they really like me and care about me. But having to give that same excuse of "I'm too tired right now" is getting really old, and I'm sick of finding new ways to brush them off as they try to convince me to do it anyway.
It is definitely something I expected from one of my close friends from high school, as she's quite healthy and has never understood what it's like to be so exhausted that you can't just go do stuff anyway. We've had an understanding for a long time that she's just not ever going to get me. After all this time she has learned to be nice about it at least, and I managed to convince her that I feel way too crappy to do more than have dinner with her tomorrow. She wanted to go see a movie and then have dinner, not getting (until I explained) that even though I'm sitting down the whole time, movies are loud and I have to focus on them so they actually tire me out a lot.
It's also something I expected from my cousin, who keeps trying to get me to drive out to her house to visit. I would love to, but it's far away and involves highway driving, plus she has this habit of asking me at the last minute. Visiting with her is also tiring because we tend to talk a lot, she has two young kids and she always wants us to go somewhere and do something. All of that together is too much right now, to the point where I'm not sure I'd be able to safely drive home. And sleeping over would mean figuring out multiple meals and planning ahead a lot. Luckily for me she occasionally comes in my direction, so I get to see her, and she's very nice about it when I refuse her invitations.
This level of not really getting it was not something I expected from my mom, who knows all about the whole chronic illness thing as she has at least ten autoimmune diseases herself. But unlike me, my mom has a tendency to push her way through it all despite the consequences, doing as much as possible every day and just feeling completely awful all the time. I decided a couple of years ago, when I dropped a major in my last year of college and cut back on my courseload because my body simply couldn't handle it, that I'm not going to do that to myself. And since then we've had distinctly different strategies of survival- mine to take it slow, and hers to shove through and do it all anyway. So maybe I should have expected this after all.
Well, technically it started with my aunt. My mom and her two sisters are going to fly out to my cousin's baby shower, and two other cousins will be there also. So of course one of my aunts decided it would be really cool if I came on the trip too. Which, to be fair, is true- it would be awesome and I'd love to see these people. At first I was thinking it might be worth doing, and my mom started encouraging me by suggesting all these ways we could make it work- we'd get a hotel with a kitchen in the room, we could cook in there, she and I could stay back and rest part of the time, we could look up gluten-free restaurants, etc etc. But when I really thought about it I began to realize that this just didn't make sense. I would end up having to fly pots and pans and a toaster over there, it's in the middle of a quarter which means I would becoming back totally drained and have to get right back into classes, I would be entrusting my already fragile state to restaurants I've never tried before that could be dubious, I would have to drive my dog down to my grandparents' beforehand and then go pick him up as soon as I got back, then deal with behavior issues because the rules aren't as strict over there, plus the simple fact that I'm not even sure I would get much out of the trip because I'm so damn tired. It took me several tries to convince my mom that I really shouldn't go, which frustrated me because she of all people should realize that yes, I have serious limitations here. If I do anything outside of my careful regulated routine I end up feeling worse, and I prefer to be cautious. I used to push myself way farther than I could handle every day and it sucked.
To be fair, taking the occasional chance and just doing something anyway is rewarding sometimes. Like my trip to Minnesota to visit a college roommate. But that just about flattened me and I was feeling it for weeks, even though towards the end of that visit I was more careful. And that was during a break.
The other thing that frustrates me a bit is how when I try to talk to my mom about my concerns about my future career, she acts like I shouldn't be worrying about that because she thinks I'll be feeling better by then. The thing is, I'm really not sure where she's getting this idea. We've found the top dose of Xyrem that I can handle, and the right antidepressant to improve my mood and make the side effects go away. This is a vast improvement on how I've felt any time in the last ten years. And it really is a great achievement. It's taken over three years of adjustment to get here, and it was worth all the hassle. However, this is it. This is how I'm going to feel for the next good long while, you know? Barring some sudden breakthrough that cures Narcolepsy, where I'm at now is where I'll be. But my mom seems to have some kind of nebulous, imaginary future in her head in which I'm feeling way better and can actually hold down a job. Which I'm really not sure is totally in keeping with reality, to be honest. And the subject has a tendency to get suddenly changed when I'm trying to clarify the situation. But you know, if it was my daughter I'm not sure I would want to consider it either. So it's not like I blame her or anything. But it is hard when the only one who might get it, doesn't.
Thursday, August 27, 2009
Car Drama
Last night I had moved back to Minnesota to live near my college again. I feel like it had something to do with getting a job. I had found a new apartment to live in and I had my (real-life) car with me. I was living with a couple of people who I didn't know very well and I was a little worried about some things. For one, our bathroom wasn't working at all- the plumbing was all screwed up. So me and my new housemates had to go to this other apartment that was across town if we wanted to shower or use the bathroom. That apartment had a lot of people- seriously, like ten of them- living in it already, so it was really hard to move around and get into the bathroom in the first place. Another hassle was that I kept having issues driving back and forth. Mostly I was just having trouble judging distances between my car and others, which is a problem I have sometimes in real life. At one point I was trying to back out around this car that had pulled into the apartment's small driveway behind me, and I kept almost bumping into it even when I thought I had room. And then I kept getting detoured around construction sites and getting lost and running into traffic. It was very frustrating and I kept having to figure out where to park places.
It's not surprising that I would dream about driving issues since it's something I worry about every day. I've hated driving since the first day of driver's ed, and for good reason. For one thing, as I mentioned before, my depth perception is off- I rarely get a really 3D sense of what's where in the world around me. This makes driving pretty frightening because I can't tell exactly how much space is between my car and anything else. That said, I'm pretty good at guessing because I've had so much practice, but in the early learning days it was terrifying. It also made parking hard to master.
It doesn't help that I live in a traffic and comstruction-ridden city that's filled with crazy, cell phone-talking drivers who cut you off and almost hit you at every possible opportunity. I've had days where I've almost gotten hit three times in the space of three blocks. The construction goes on year-round and major roads can be closed for multiple years at a time. It's awful and dangerous even for the drivers who aren't constantly fighting the urge to sleep.
Driving is also one of the most exhausting activities for me. I'm afraid of getting in an accident, and the fear makes me concentrate much harder on driving than I do on, say, walking my dog, because I know that I can be zoned out while walking my dog and not die. But concentrating hard enough to be able to respond to sudden events when you're going 35 miles per hour is very difficult and tiring. My brain is constantly trying to pull me into sleep mode, or at least zoned out mode, and it takes so much effort to stay focused on my surroundings instead. Because it wears me out so fast I can't do it for very long, especially on the highway where I have to be doubly alert. And it really isn't fun being afraid of losing focus when the stakes are so high.
Ironically, because I'm forced to be careful and concentrate so hard I'm probably one of the safest drivers out there. I've been driving for about seven years now and have never had an accident, not even a minor bump. I never talk on my phone or text while driving because I know that I couldn't get away with it, unlike most people. I'm actually glad that I'm forced to be so cautious because it keeps me safe. And as much as I hate driving, it's too convenient to risk losing the privilege.
It's not surprising that I would dream about driving issues since it's something I worry about every day. I've hated driving since the first day of driver's ed, and for good reason. For one thing, as I mentioned before, my depth perception is off- I rarely get a really 3D sense of what's where in the world around me. This makes driving pretty frightening because I can't tell exactly how much space is between my car and anything else. That said, I'm pretty good at guessing because I've had so much practice, but in the early learning days it was terrifying. It also made parking hard to master.
It doesn't help that I live in a traffic and comstruction-ridden city that's filled with crazy, cell phone-talking drivers who cut you off and almost hit you at every possible opportunity. I've had days where I've almost gotten hit three times in the space of three blocks. The construction goes on year-round and major roads can be closed for multiple years at a time. It's awful and dangerous even for the drivers who aren't constantly fighting the urge to sleep.
Driving is also one of the most exhausting activities for me. I'm afraid of getting in an accident, and the fear makes me concentrate much harder on driving than I do on, say, walking my dog, because I know that I can be zoned out while walking my dog and not die. But concentrating hard enough to be able to respond to sudden events when you're going 35 miles per hour is very difficult and tiring. My brain is constantly trying to pull me into sleep mode, or at least zoned out mode, and it takes so much effort to stay focused on my surroundings instead. Because it wears me out so fast I can't do it for very long, especially on the highway where I have to be doubly alert. And it really isn't fun being afraid of losing focus when the stakes are so high.
Ironically, because I'm forced to be careful and concentrate so hard I'm probably one of the safest drivers out there. I've been driving for about seven years now and have never had an accident, not even a minor bump. I never talk on my phone or text while driving because I know that I couldn't get away with it, unlike most people. I'm actually glad that I'm forced to be so cautious because it keeps me safe. And as much as I hate driving, it's too convenient to risk losing the privilege.
Saturday, August 22, 2009
Firmly In The Closet
The other day one of the guys in my class, while he didn't mean to, really irked me. He saw one of my anthro characters on my notes, and asked me if I know this other student who apparently also draws furries. I told him no, I'd never met this person. And he said, "You should meet him- I bet y'all are soulmates!" Though I wanted to get annoyed at him, I simply said "Oh really?" and then stopped the conversation. After all, while it is a kind of dumb comment, he wasn't trying to be mean. He was just doing what everyone else in this state seems to do- assume that I'm straight.
I'm very gay. I'm gayer than the gayest rainbow, and if you don't believe me you can ask my ex-girlfriend. I'm also firmly in the closet. My close friends know, as do my parents, but all of my acquaintances and other relatives are in the dark on this one, and for good reason. For one thing I still have some issues. And for another, there are certain people who would not be open-minded if I told them and would most likely start trying to "change my mind". So I keep it to myself, which is one of many things that get in the way of any possible romantic relationship. But that's a story for another day.
I was raised in- how do I put this nicely?- one of the most backwards states in America. The whole time I was growing up I was told that I would find a boy, get married and have kids. I never bought the kids scenario, mainly because even as a child I wasn't into that idea. But I bought into the husband, even though I didn't think boys were that interesting. Every year at Christmas we would visit my dad's family, and the grownups would ask me and my girl cousins what we thought of boys. For awhile we all said "Yuck!" And then my cousins started to respond with interesting, or cute, or at least alright. And I stayed on yuck.
I always thought that was weird. I kept waiting to reach that age where I would think boys were attractive, but it never came. Even in my teens I just wasn't interested in the guys in my class. I feel like this should have been a red flag for me, but it wasn't. Everyone had always assumed I was straight, so I didn't even think to question it, and just made excuses.
That whole time I was assuming I was straight, I had massive crushes on other girls. It started in preschool, with this other girl in my class. I thought she was really pretty and I loved her hair. I followed her around because (I thought at the time) I really wanted to be friends with her. I was confused when she was mean to me and I still wanted to be her friend anyway, and I couldn't figure out why my feelings toward her (who I didn't even really know) were so strong.
It kept on all through elementary school. There was always a girl I thought was pretty and wanted to be friends with, and later I would wonder why. In the meantime I pretended to have crushes on boys because all the other girls were doing it- and at the time I remember assuming that they were all faking it too.
In middle school I would have crushes on teachers, which just really embarrassed me, especially when they were female. I would put those thoughts out of my mind and feel really wrong for thinking about them in any kind of a sexual way. I would beat myself up over it because I seriously thought I was just messed up. But still, even though I acknowledged those feelings enough to be ashamed, it didn't occur to me to question that I was straight. And by high school, when I finally first heard about homosexuality, I was so sick that I never thought to ask myself the important questions- I was too busy just surviving.
It wasn't until college that the realization hit me. I met a new friend through a PE class, and she seemed really nice. She invited me to her birthday party. It was really fun, because it was a tea party and all the people there were very friendly. I found out she had a girlfriend, and eventually it came out in conversation that almost everyone there was gay or bi. As I was leaving I thought about how funny it was that I was the only straight person there when I'd never had any gay friends before. And then I asked myself the question, and got an answer that I wasn't expecting. It was like my brain just froze, like it was jammed. The realization hit me like a ton of bricks. And then I knew that I wasn't straight, and never had been. And I felt numb and weak with pure fear.
It was several months before I could really think about it again. The whole time I felt like I was in a dream. The fear followed me everywhere. I couldn't understand why I was having such a strong negative reaction to something that was just naturally me, but I couldn't shake it. Part of what bothered me was probably the fact that I was mistaken for so long. I pride myself on how introspective I am most of the time, and that I missed something so obvious for so long was really disturbing to me. But I also am a product of the environment I was brought up in. Though I had never thought homosexuality was wrong, and supported the fact that it's not a choice, it's different when it's you and not someone anonymous. All the things I heard growing up got dredged up again, and I couldn't help feeling like a freak of nature, like something was wrong with me, like I had somehow let my family down by not being "normal". It was hard. And I hid it from my friends for months even though I knew they wouldn't care. I avoided the new friend who had sparked the realization, which I regret because it was mean and I never explained myself later. I crawled into my shell and it took years to pry myself out.
It's been three and a half years now. I'm finally feeling like it's okay for me to be gay, and I've told all of my close friends. My parents know too, and have been very supportive as I knew they would be. I'm almost to the point where I think it would be alright for some other family members to know, chosen wisely of course. But I'm not ready to declare myself to new acquaintances, even as they openly assume I'm straight, and I don't know if I ever will be. It still smarts a little. And I don't want to risk any confrontations because it would be so easy to get hurt. The closet is so much safer.
I'm very gay. I'm gayer than the gayest rainbow, and if you don't believe me you can ask my ex-girlfriend. I'm also firmly in the closet. My close friends know, as do my parents, but all of my acquaintances and other relatives are in the dark on this one, and for good reason. For one thing I still have some issues. And for another, there are certain people who would not be open-minded if I told them and would most likely start trying to "change my mind". So I keep it to myself, which is one of many things that get in the way of any possible romantic relationship. But that's a story for another day.
I was raised in- how do I put this nicely?- one of the most backwards states in America. The whole time I was growing up I was told that I would find a boy, get married and have kids. I never bought the kids scenario, mainly because even as a child I wasn't into that idea. But I bought into the husband, even though I didn't think boys were that interesting. Every year at Christmas we would visit my dad's family, and the grownups would ask me and my girl cousins what we thought of boys. For awhile we all said "Yuck!" And then my cousins started to respond with interesting, or cute, or at least alright. And I stayed on yuck.
I always thought that was weird. I kept waiting to reach that age where I would think boys were attractive, but it never came. Even in my teens I just wasn't interested in the guys in my class. I feel like this should have been a red flag for me, but it wasn't. Everyone had always assumed I was straight, so I didn't even think to question it, and just made excuses.
That whole time I was assuming I was straight, I had massive crushes on other girls. It started in preschool, with this other girl in my class. I thought she was really pretty and I loved her hair. I followed her around because (I thought at the time) I really wanted to be friends with her. I was confused when she was mean to me and I still wanted to be her friend anyway, and I couldn't figure out why my feelings toward her (who I didn't even really know) were so strong.
It kept on all through elementary school. There was always a girl I thought was pretty and wanted to be friends with, and later I would wonder why. In the meantime I pretended to have crushes on boys because all the other girls were doing it- and at the time I remember assuming that they were all faking it too.
In middle school I would have crushes on teachers, which just really embarrassed me, especially when they were female. I would put those thoughts out of my mind and feel really wrong for thinking about them in any kind of a sexual way. I would beat myself up over it because I seriously thought I was just messed up. But still, even though I acknowledged those feelings enough to be ashamed, it didn't occur to me to question that I was straight. And by high school, when I finally first heard about homosexuality, I was so sick that I never thought to ask myself the important questions- I was too busy just surviving.
It wasn't until college that the realization hit me. I met a new friend through a PE class, and she seemed really nice. She invited me to her birthday party. It was really fun, because it was a tea party and all the people there were very friendly. I found out she had a girlfriend, and eventually it came out in conversation that almost everyone there was gay or bi. As I was leaving I thought about how funny it was that I was the only straight person there when I'd never had any gay friends before. And then I asked myself the question, and got an answer that I wasn't expecting. It was like my brain just froze, like it was jammed. The realization hit me like a ton of bricks. And then I knew that I wasn't straight, and never had been. And I felt numb and weak with pure fear.
It was several months before I could really think about it again. The whole time I felt like I was in a dream. The fear followed me everywhere. I couldn't understand why I was having such a strong negative reaction to something that was just naturally me, but I couldn't shake it. Part of what bothered me was probably the fact that I was mistaken for so long. I pride myself on how introspective I am most of the time, and that I missed something so obvious for so long was really disturbing to me. But I also am a product of the environment I was brought up in. Though I had never thought homosexuality was wrong, and supported the fact that it's not a choice, it's different when it's you and not someone anonymous. All the things I heard growing up got dredged up again, and I couldn't help feeling like a freak of nature, like something was wrong with me, like I had somehow let my family down by not being "normal". It was hard. And I hid it from my friends for months even though I knew they wouldn't care. I avoided the new friend who had sparked the realization, which I regret because it was mean and I never explained myself later. I crawled into my shell and it took years to pry myself out.
It's been three and a half years now. I'm finally feeling like it's okay for me to be gay, and I've told all of my close friends. My parents know too, and have been very supportive as I knew they would be. I'm almost to the point where I think it would be alright for some other family members to know, chosen wisely of course. But I'm not ready to declare myself to new acquaintances, even as they openly assume I'm straight, and I don't know if I ever will be. It still smarts a little. And I don't want to risk any confrontations because it would be so easy to get hurt. The closet is so much safer.
Sunday, August 9, 2009
Fashion Police
Last night I actually did manage to get to sleep at a decent hour. I slept pretty well for most of the night. By morning I was tossing and turning some, and had an interesting dream in which I was this life coach person who was helping out people who had gotten makeovers on What Not To Wear. The last part of the show (after the hair and makeup) now featured me giving the person daily life advice and encouragement for the first day after they returned home. There were at least four people I was doing this for, one after another, and the film crew was there capturing it for the different episodes. We kept having to wait while everything got set up, and I remember stressing out about what I was wearing during the filming because I knew Stacy and Clinton were going to watch it later and I didn't want to be their next victim, but all I could find to put on were baggy t-shirts and faded jeans. I'm pretty sure my advice was really random- I remember explaining to one woman that she shouldn't feel bad for spilling a cup of tea at a party because it wasn't her fault and these things just happen sometimes. I also reassured her that remembering people's names is hard and not to feel bad if you can't keep track of them.
This just goes to show that I watch What Not To Wear more times a day than is probably healthy, lol. It comes on at convenient times when I'm sitting down to eat, and it doesn't help that my mom likes to tape it. I've been known to see up to four episodes in a day, more if I'm especially sick or tired. I enjoy it for several reasons that I like to tell myself are good reasons. For one thing, it's interesting to watch people go through a mental transformation in addition to the more superficial, outward transformation. It seems to really help people see themselves as important and gives them a boost of confidence. I also watch it to learn about clothing and appropriateness and how to tell when something really fits. You could say I've been going through my own image transformation for awhile now, and I need the advice.
I was very much stuck in a rut for many of the years I was sick and undiagnosed. I started to collect animal shirts when I hit my teenage years, and continued to buy the same size even as I began to lose weight. I did the same with already baggy cargo pants, and then switched to buying them in the boy's department when I stopped finding them in the girl's. This wasn't because I was particularly attached to my look; it was more because I was living in permanent autopilot and it never occured to me to come up with something else. I eventually got the inclination to come up with a new style when I had been in college for a year or so, but energy was very much a factor. Because of this lack of energy I hated shopping. I thought it was just something I didn't enjoy, but now I realize that I was trying to do too much at once. My mom and I would go to the mall and try to do it all in one sitting- but pretty soon I would start dragging. Nothing is enjoyable when you're about to fall over because you've been on your feet for too long.
It was because of this exhaustion and my bad experiences with shopping for clothes that it took me several years to even really think about changing the way that I was dressing. Once I did decide to change, it was a question of what to change my look to. I did some experimenting and found that I had no idea what I was doing. Finally I went to my aunt for advice, who encouraged me to look in more trendy stores. Since then it's been hit and miss for a year or so. I do feel like I'm starting to figure out how I want to look, but it's come on slowly. I've tried many things and given a lot of it to charity, but one thing I have learned is how to shop. Basically I have to pick a day when I don't have a class, important errands or anything else for that matter. Then I can go to one store, and because I'm standing the whole time I can only really spend an hour there. I usually end up with one or two items, if I'm lucky. Then I come straight home and lay down. The advantage to this is that I officially like shopping now. Trying a few things on is fun, even when I don't find anything that I really like. There is definitely an advantage to knowing your limitations.
I only started watching What Not To Wear this past year, and it's been really helpful in my quest to figure out how I want to look. But I have to admit that I also like it because it's just funny. There's something rediculously entertaining about watching the hosts sneak up on people. What can I say, I can't help myself.
This just goes to show that I watch What Not To Wear more times a day than is probably healthy, lol. It comes on at convenient times when I'm sitting down to eat, and it doesn't help that my mom likes to tape it. I've been known to see up to four episodes in a day, more if I'm especially sick or tired. I enjoy it for several reasons that I like to tell myself are good reasons. For one thing, it's interesting to watch people go through a mental transformation in addition to the more superficial, outward transformation. It seems to really help people see themselves as important and gives them a boost of confidence. I also watch it to learn about clothing and appropriateness and how to tell when something really fits. You could say I've been going through my own image transformation for awhile now, and I need the advice.
I was very much stuck in a rut for many of the years I was sick and undiagnosed. I started to collect animal shirts when I hit my teenage years, and continued to buy the same size even as I began to lose weight. I did the same with already baggy cargo pants, and then switched to buying them in the boy's department when I stopped finding them in the girl's. This wasn't because I was particularly attached to my look; it was more because I was living in permanent autopilot and it never occured to me to come up with something else. I eventually got the inclination to come up with a new style when I had been in college for a year or so, but energy was very much a factor. Because of this lack of energy I hated shopping. I thought it was just something I didn't enjoy, but now I realize that I was trying to do too much at once. My mom and I would go to the mall and try to do it all in one sitting- but pretty soon I would start dragging. Nothing is enjoyable when you're about to fall over because you've been on your feet for too long.
It was because of this exhaustion and my bad experiences with shopping for clothes that it took me several years to even really think about changing the way that I was dressing. Once I did decide to change, it was a question of what to change my look to. I did some experimenting and found that I had no idea what I was doing. Finally I went to my aunt for advice, who encouraged me to look in more trendy stores. Since then it's been hit and miss for a year or so. I do feel like I'm starting to figure out how I want to look, but it's come on slowly. I've tried many things and given a lot of it to charity, but one thing I have learned is how to shop. Basically I have to pick a day when I don't have a class, important errands or anything else for that matter. Then I can go to one store, and because I'm standing the whole time I can only really spend an hour there. I usually end up with one or two items, if I'm lucky. Then I come straight home and lay down. The advantage to this is that I officially like shopping now. Trying a few things on is fun, even when I don't find anything that I really like. There is definitely an advantage to knowing your limitations.
I only started watching What Not To Wear this past year, and it's been really helpful in my quest to figure out how I want to look. But I have to admit that I also like it because it's just funny. There's something rediculously entertaining about watching the hosts sneak up on people. What can I say, I can't help myself.
Wednesday, August 5, 2009
Spiritual Girl
Both of my parents are very ardent atheists, especially my dad, who has probably every book ever written on the religion-bashing front in his collection. You might even describe him as militant- he thinks the world would be a much better place without any religion, and basically believes that religions are the root of a whole lot of social problems and not much else. To be fair, he has a small piece of a point, though in my opinion he overdoes it. He loves to bring up religion with people and debate them on it, especially at family gatherings- which is interesting because his whole side of the family is solidly Christian. Every Thanksgiving when we visit his side of the family it inevitably turns into a politics/religion debate tournament. Dad, remember what you aren't supposed to bring up at parties?
He seems to get a little more extreme in his views as he gets older, whereas I'm the opposite pretty much. As you might imagine, I basically absorbed my parents' beliefs as a child and just parroted them to the world, which is what most kids seem to do. But at the same time I've always been a very spiritual person at heart. While I was copying my parents' ideas outwardly, I was busy making up my own religion in secret.
Thinking about it now amuses me very much because while I thought I had this secret religion that no one knew about I'm sure it was pretty obvious. I had all sorts of daily rituals involving leaves and trees and dancing around outside. As I hit puberty candles and altars were added, and it got more focused on small meaningful objects. At this point it took more of a new-agey turn because of my rather new-agey friends. We used to get together and have ceremonies and make up deep things to talk about. We had an elemental theme most of the time, and of course lots of candles and tea. It was really fun and felt meaningful in a way that I hadn't experienced before.
By then I was starting to feel tired a lot, and I remember when I had to stop the dancing ritual because I almost fainted once and could hardly stand up after the short exercise. I used to dance to specific songs that resonated with me for whatever reason, but even after I stopped being able to sustain a dance for an entire song I kept the concept. I would put a song on endless repeat and draw or think or arrange sacred objects in patterns on my floor by candlelight.
These rituals helped me feel safe even once the hallucinations started. I started to sink into that horrible mental haze full of monsters and paralysis and horror movie nightmares, and I had to find some way to explain it, some way to not feel like I was going insane. I theorized that what I was experiencing was impressions of ghosts, which makes sense if you think about it- the banging and creaking sounds on waking, the feeling of hands grabbing me when I was falling asleep, the intense reality of the nightmares. It sounds like every ghost story I'd ever heard.
This belief got me through a lot. On the one hand, there was a reason for what I was experiencing that made some logical sense, so I didn't worry about being crazy anymore. Plus it made these impressions and hallucinations seem like they were someone else's experience that I was only seeing, but that wasn't directly impacting my life. I kept up my own rituals, sometimes incorporating things from what Narcolepsy was throwing at me, and my secret religion got more complex. And now it really was a secret, because I was a teenager and therefore actually good at hiding things from parents.
When I went away to college I began to question the beliefs I had built up. After all, that's what college is for. About my sophomore year or so I had a total life crisis and switched completely to thinking that I was actually insane. I realized I needed help, but made the mistake of assuming every single spiritually-inclined feeling I had was a result of whatever was wrong with me. This made me really depressed- the most depressed I've ever been, actually, and believe me when I say I've been all the way at the bottom. I fessed up to my parents, who helped me through multiple doctors until I landed in the capable hands of my first sleep neurologist. I was a typical case, minus the cataplexy, and a sleep study confirmed it. I had my answer, but that didn't make me happy.
Completely religionless, then, I left for my study abroad experience in Tokyo. While there I learned many things, including how to be a spiritual person again. I slowly woke up from the haze as the Xyrem started to work on me. And by the time I left, I had a philosophy and spirituality once again all my own. In the years since it's had time to cure a little, and nowadays I think I've pretty much found where I want to be. It's a bit Kung Fu Panda (there is no secret ingrediant, lol), and live-and-let-live, and I've found that I still value nature and the elements and sacred objects. I do believe in something greater, but it isn't quite the same as a god; it's more like a universal feeling of connectedness among living things. I don't see it as sentient, exactly, but it's still very profound to me.
At some point my parents noticed I was diverging from their beliefs. For a little while this caused some tension in the house, but eventually my dad learned not to start religion-bashing tangents in front of me. I've been forced to stick up for myself on multiple occasions when I would rather not, and eventually got it across that I don't approve of the intolerance that some people, on any side of a religion debate, tend to express. So now it's not something we talk about, and that's fine with me.
I'm not sure how I would identify now. I'm no longer an atheist, but I really don't think I need a new label. My own sense of spirituality has always been a private thing, and it will continue that way. I don't feel the need to convert anyone or even explain all this to the people in my life. It's just something to keep close, something that gives deeper meaning to my life and the world around me.
He seems to get a little more extreme in his views as he gets older, whereas I'm the opposite pretty much. As you might imagine, I basically absorbed my parents' beliefs as a child and just parroted them to the world, which is what most kids seem to do. But at the same time I've always been a very spiritual person at heart. While I was copying my parents' ideas outwardly, I was busy making up my own religion in secret.
Thinking about it now amuses me very much because while I thought I had this secret religion that no one knew about I'm sure it was pretty obvious. I had all sorts of daily rituals involving leaves and trees and dancing around outside. As I hit puberty candles and altars were added, and it got more focused on small meaningful objects. At this point it took more of a new-agey turn because of my rather new-agey friends. We used to get together and have ceremonies and make up deep things to talk about. We had an elemental theme most of the time, and of course lots of candles and tea. It was really fun and felt meaningful in a way that I hadn't experienced before.
By then I was starting to feel tired a lot, and I remember when I had to stop the dancing ritual because I almost fainted once and could hardly stand up after the short exercise. I used to dance to specific songs that resonated with me for whatever reason, but even after I stopped being able to sustain a dance for an entire song I kept the concept. I would put a song on endless repeat and draw or think or arrange sacred objects in patterns on my floor by candlelight.
These rituals helped me feel safe even once the hallucinations started. I started to sink into that horrible mental haze full of monsters and paralysis and horror movie nightmares, and I had to find some way to explain it, some way to not feel like I was going insane. I theorized that what I was experiencing was impressions of ghosts, which makes sense if you think about it- the banging and creaking sounds on waking, the feeling of hands grabbing me when I was falling asleep, the intense reality of the nightmares. It sounds like every ghost story I'd ever heard.
This belief got me through a lot. On the one hand, there was a reason for what I was experiencing that made some logical sense, so I didn't worry about being crazy anymore. Plus it made these impressions and hallucinations seem like they were someone else's experience that I was only seeing, but that wasn't directly impacting my life. I kept up my own rituals, sometimes incorporating things from what Narcolepsy was throwing at me, and my secret religion got more complex. And now it really was a secret, because I was a teenager and therefore actually good at hiding things from parents.
When I went away to college I began to question the beliefs I had built up. After all, that's what college is for. About my sophomore year or so I had a total life crisis and switched completely to thinking that I was actually insane. I realized I needed help, but made the mistake of assuming every single spiritually-inclined feeling I had was a result of whatever was wrong with me. This made me really depressed- the most depressed I've ever been, actually, and believe me when I say I've been all the way at the bottom. I fessed up to my parents, who helped me through multiple doctors until I landed in the capable hands of my first sleep neurologist. I was a typical case, minus the cataplexy, and a sleep study confirmed it. I had my answer, but that didn't make me happy.
Completely religionless, then, I left for my study abroad experience in Tokyo. While there I learned many things, including how to be a spiritual person again. I slowly woke up from the haze as the Xyrem started to work on me. And by the time I left, I had a philosophy and spirituality once again all my own. In the years since it's had time to cure a little, and nowadays I think I've pretty much found where I want to be. It's a bit Kung Fu Panda (there is no secret ingrediant, lol), and live-and-let-live, and I've found that I still value nature and the elements and sacred objects. I do believe in something greater, but it isn't quite the same as a god; it's more like a universal feeling of connectedness among living things. I don't see it as sentient, exactly, but it's still very profound to me.
At some point my parents noticed I was diverging from their beliefs. For a little while this caused some tension in the house, but eventually my dad learned not to start religion-bashing tangents in front of me. I've been forced to stick up for myself on multiple occasions when I would rather not, and eventually got it across that I don't approve of the intolerance that some people, on any side of a religion debate, tend to express. So now it's not something we talk about, and that's fine with me.
I'm not sure how I would identify now. I'm no longer an atheist, but I really don't think I need a new label. My own sense of spirituality has always been a private thing, and it will continue that way. I don't feel the need to convert anyone or even explain all this to the people in my life. It's just something to keep close, something that gives deeper meaning to my life and the world around me.
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
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.
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
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
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
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.
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
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.
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.
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.
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