(no subject)
Most of the time, I am thinking. I think about all sorts of things. The future. Love. What I want to do during the coveted summer months. Who I want to go see.
But so so rarely do I think about just how lucky I am. Because I am goddamn lucky. It's actually kind of really ridiculous how lucky I am.
I have a disease called Cystic Fibrosis. Very few people I know have heard of it. It might help the response rate if I actually consistently told people I have it, but I don't tell them because I don't really have to.
I know there are others out there like me, but I feel like a pretty big biological freak based on the fact that this disease that affects a rather large number of people has almost no effect on me. I am, to the continual surprise of my doctors, healthy. I am healthy like normal people are healthy. Or maybe healthy like slightly unhealthy normal people, but you get the idea: for a CF kid, I'm a freak.
I haven't always been this way, but I've never had it as bad as almost everyone else. Yeah, I had to take pills so that I could properly digest my food and gain weight, and my lungs always offered thicker mucus than most peoples', but I never remember feeling all that different. CF was just something that got in my way on the occasions when I wanted to eat the tortilla chips at a Mexican restaurant but couldn't because the waitress was slow bringing the drink I needed to take my pills. I have no memory of ever feeling like I was a sick kid.
I do have memories of going around the city I lived in asking for donations. I was a CF poster child for a while, but I'm not sure why. I mean, I definitely had the disease, but Lo Dietrich, a fellow CF kid, had it way worse. I have no idea why I was getting any attention at all. As far as I know, she's been doing all right these days; we kind of fell out of touch with the CF crowd on account of moving, and then on account of me hardly even having the stupid disease anymore, but I feel like we would hear if things took a bad turn. Her third set of lungs is working out much better than the other two, but now she is waiting for a kidney transplant because the disease had no bad lungs to focus on anymore and went to bother elsewhere. Because that's how it usually goes. People with CF are on all sorts of drugs their whole lives, in and out of the hospital constantly, struggling to keep weight on, struggling to get enough oxygen to do basic things like walking to the bathroom, usually confined to their house or near vicinity, sometimes requiring a new set of lungs, and then having to deal with the possibility that their body might reject them, among other organs for a variety of reasons. Overall lifespan has been extended into the 30s with the improvement of medical technology.
These are things I know about my disease, but they aren't things I've had to deal with all that much. I did have a brief spell of distress over my own theoretical mortality rate a few years ago, but that's just because I couldn't deal with the fact that I was inexplicably getting better when I should be getting worse. It just didn't make sense. It still doesn't, not that I mind.
Maybe all of this isn't making a whole lot of sense, but I'm just going with stream of consciousness right now. I never talk about my disease, so this is pretty weird for me. But I hardly feel like I have it anymore, and almost feel like I don't have the right to call myself diseased. I mean, I do cough a whole hell of a lot, and my mucus is still much thicker than regular kind, but that's about the extent of my problems. I no longer have to take pills to digest food because my pancreas randomly decided it wanted to work again. I am maintaining a normal weight, and actually considering things like fat content and calories (which were never an issue before). I'm still on my original set of lungs (though I do have a few complaints about wind capacity). I have nebulizer medicines in my fridge still, but they aren't essential to me staying alive or anything. I've only been to the hospital once, and that was for regular old pneumonia; there were no complications other than that they kept sticking me with needles and tubes and DEAR GOD I HATE THOSE THINGS. I'm 21, I'm away from home at college, and I'm living a pretty normal life.
Most people don't know I have this disease; if I'm coughing an abnormal amount, they'll ask if I'm okay, but my typical response is, "I just cough", so I assume that most of them assume I have asthma and leave it at that. Or they assume I smoke (which is definitely a HELL NO, but there you go; my cough is not unlike smoker's cough). Obviously my family knows, and a few close friends, but I usually don't feel the need to tell anyone because then I feel like I have to explain what it is and how I pretty much don't have it, and that got old years ago. Also, I hate even the possibility of someone pitying me because of something that doesn't really affect my life. It's just there. I mean, it's genetic, so it's not like I can actually be pronounced cured until a cure is found, but... I'm not really sick anymore.
And then, by the luck of the Internet draw, I find people like 65redroses who make me realize just how amazing my life actually is. I've been crying off and on for the past hour or so, sifting through her words and pictures and feeling so much that I am so. So. SO. Lucky. That's the funny thing about me being diseased but not: I almost forget how bad things could have been, how bad things are for so many other people with the same screwed-up genes. I have friends and family who love me unconditionally. I have dreams and goals. Now I need to go out and make something of this chance I've got, the chance that somehow came to me instead of finding people like her and making their lives livable.
But I will start on that tomorrow. It is just past midnight now, and I have a paper to write (among five billion other things). My tummy also has the rumblies. So I think I'll go heat up that leftover quesadilla, and maybe, for the first time in a really long time, think about just how wonderful I've got it. It's so easy to take living for granted.
Edit: THANKS WIKIPEDIA. Definitely a common disease, definitely from the Irish part of my bloodline, and the overall outlook seems better than I'd thought. And hitsujiga has a point; I've probably got some "mild" alleles going on or something. Dunno. Like I said, it isn't something I think about very often. But leave it to probable PMS to set me off about things I never usually consider.
But so so rarely do I think about just how lucky I am. Because I am goddamn lucky. It's actually kind of really ridiculous how lucky I am.
I have a disease called Cystic Fibrosis. Very few people I know have heard of it. It might help the response rate if I actually consistently told people I have it, but I don't tell them because I don't really have to.
I know there are others out there like me, but I feel like a pretty big biological freak based on the fact that this disease that affects a rather large number of people has almost no effect on me. I am, to the continual surprise of my doctors, healthy. I am healthy like normal people are healthy. Or maybe healthy like slightly unhealthy normal people, but you get the idea: for a CF kid, I'm a freak.
I haven't always been this way, but I've never had it as bad as almost everyone else. Yeah, I had to take pills so that I could properly digest my food and gain weight, and my lungs always offered thicker mucus than most peoples', but I never remember feeling all that different. CF was just something that got in my way on the occasions when I wanted to eat the tortilla chips at a Mexican restaurant but couldn't because the waitress was slow bringing the drink I needed to take my pills. I have no memory of ever feeling like I was a sick kid.
I do have memories of going around the city I lived in asking for donations. I was a CF poster child for a while, but I'm not sure why. I mean, I definitely had the disease, but Lo Dietrich, a fellow CF kid, had it way worse. I have no idea why I was getting any attention at all. As far as I know, she's been doing all right these days; we kind of fell out of touch with the CF crowd on account of moving, and then on account of me hardly even having the stupid disease anymore, but I feel like we would hear if things took a bad turn. Her third set of lungs is working out much better than the other two, but now she is waiting for a kidney transplant because the disease had no bad lungs to focus on anymore and went to bother elsewhere. Because that's how it usually goes. People with CF are on all sorts of drugs their whole lives, in and out of the hospital constantly, struggling to keep weight on, struggling to get enough oxygen to do basic things like walking to the bathroom, usually confined to their house or near vicinity, sometimes requiring a new set of lungs, and then having to deal with the possibility that their body might reject them, among other organs for a variety of reasons. Overall lifespan has been extended into the 30s with the improvement of medical technology.
These are things I know about my disease, but they aren't things I've had to deal with all that much. I did have a brief spell of distress over my own theoretical mortality rate a few years ago, but that's just because I couldn't deal with the fact that I was inexplicably getting better when I should be getting worse. It just didn't make sense. It still doesn't, not that I mind.
Maybe all of this isn't making a whole lot of sense, but I'm just going with stream of consciousness right now. I never talk about my disease, so this is pretty weird for me. But I hardly feel like I have it anymore, and almost feel like I don't have the right to call myself diseased. I mean, I do cough a whole hell of a lot, and my mucus is still much thicker than regular kind, but that's about the extent of my problems. I no longer have to take pills to digest food because my pancreas randomly decided it wanted to work again. I am maintaining a normal weight, and actually considering things like fat content and calories (which were never an issue before). I'm still on my original set of lungs (though I do have a few complaints about wind capacity). I have nebulizer medicines in my fridge still, but they aren't essential to me staying alive or anything. I've only been to the hospital once, and that was for regular old pneumonia; there were no complications other than that they kept sticking me with needles and tubes and DEAR GOD I HATE THOSE THINGS. I'm 21, I'm away from home at college, and I'm living a pretty normal life.
Most people don't know I have this disease; if I'm coughing an abnormal amount, they'll ask if I'm okay, but my typical response is, "I just cough", so I assume that most of them assume I have asthma and leave it at that. Or they assume I smoke (which is definitely a HELL NO, but there you go; my cough is not unlike smoker's cough). Obviously my family knows, and a few close friends, but I usually don't feel the need to tell anyone because then I feel like I have to explain what it is and how I pretty much don't have it, and that got old years ago. Also, I hate even the possibility of someone pitying me because of something that doesn't really affect my life. It's just there. I mean, it's genetic, so it's not like I can actually be pronounced cured until a cure is found, but... I'm not really sick anymore.
And then, by the luck of the Internet draw, I find people like 65redroses who make me realize just how amazing my life actually is. I've been crying off and on for the past hour or so, sifting through her words and pictures and feeling so much that I am so. So. SO. Lucky. That's the funny thing about me being diseased but not: I almost forget how bad things could have been, how bad things are for so many other people with the same screwed-up genes. I have friends and family who love me unconditionally. I have dreams and goals. Now I need to go out and make something of this chance I've got, the chance that somehow came to me instead of finding people like her and making their lives livable.
But I will start on that tomorrow. It is just past midnight now, and I have a paper to write (among five billion other things). My tummy also has the rumblies. So I think I'll go heat up that leftover quesadilla, and maybe, for the first time in a really long time, think about just how wonderful I've got it. It's so easy to take living for granted.
Edit: THANKS WIKIPEDIA. Definitely a common disease, definitely from the Irish part of my bloodline, and the overall outlook seems better than I'd thought. And hitsujiga has a point; I've probably got some "mild" alleles going on or something. Dunno. Like I said, it isn't something I think about very often. But leave it to probable PMS to set me off about things I never usually consider.