HELLO HI HEY I AM HOME and it is disgusting because my father is in India and apparently with resident neat freak gone everyone's become disgusting. I have taken up the post of Temporary Neat Freak, i.e., she who does the week's worth of dishes left in the sink and getting smelly. I had thoughts, dreams, hopes, for this bloggy post but in the end I am sleepy and lazy and the house is gross.
A while ago, the Rejectionist (I link that an awful lot, if y'all aren't following yet you should be) said something along the lines of "write me guest posts about if you are a minority/woman/disabled person, what do you read and what bugs the shit out of you?" (paraphrase.) I submitted and was rejected (star-struckedly, if that is a word. I was star-struckedly rejected. In that I was star-struck at recieving an actual return email even if it said no). In addition to "no", the return email and also R. on her blog said something along the lines of (again, paraphrase) "blahhh only five chosen, so many recieved, go post on your own blogz plz" and also something along the lines of me being "really great." Oh, wait.
Regardless, I give you The Post I Wrote While At My Internship, three words per 5 minutes because I felt guilty not doing actual work. Very little revising happened between then and now, because that would require effort and there is laundry to be done and piles to be made and sleep to be had!
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Hello, friends! I almost chickened out of writing this little nubbin of a piece because, as I sat in the car with a screaming cousin-once-removed, I thought to myself “Well, this is silly. The Rejectionist wants marginalized people, not random isolated person who feels totally separate even from the others in her situation.” And then I thought to myself “well that is an arrogant way to consider oneself, especially with all the energy you put into functioning like a normal person.” And then my head started to hurt because Cousin Smudge has quite a pair of lungs.
To remind you, I was diagnosed with lupus during my 9th summer Alive, and I do not think I need to explain that there is not much in the way of lupus advocacy unless you really look for it. (I mean, we cannot even decide if our Awareness Month is October or May. And then we are shocked when no one knows what lupus is.) Furthermore, I can find a handful of people my age who have the disease, but have never found anyone my age who’s had it this long. I haven’t, in other words, found anyone else whose childhood was both kind of normal and completely enveloped by terrible health. Lupus is usually treatable, but it can be completely debilitating or fatal. But I am so not here to tell you about all that. I do that enough here.
Only thing you really need to know about me: I didn’t tell anyone I was sick until I was 17. I mean, my peers. My parents and teachers knew. But talk about isolating yourself.
Inconveniently, the year of my diagnosis my class read a book about a kid with muscular dystrophy. Well, specifically, we read a book about a girl whose brother had muscular dystrophy. (I cannot for the life of me find this book, but I swear it exists.)
I started to get uncomfortable really quick.
For one thing, I became painfully aware that my disease, despite the swollen fingers and the years of chemotherapy and the no-end-in-sight, is really pretty un-epic. In fact, the phrase you’ll see snarkily referenced on pretty much any lupus site is, “but you don’t look sick!” …And we really often don’t.
Furthermore, little MD boy was pretty nice to his sister. Actually, he was full of hugs and smiles. I’m not full of hugs and smiles, I thought to myself. Not only am I healthier, luckier, and going to live longer than Fictional Character, but I am also a way worse sport. Fuck.
(I probably didn’t think “fuck” back then, but the sentiment has held pretty firmly.)
It’s true, all things considered, I am capable of appearing to have a good attitude. But this is more a matter of keeping my mouth shut, or of being embarrassed to speak up. And for many, many years I did not read very much at all. I read and re-read Lord of the Rings, the Harry Potter series, and Ella Enchanted over and over basically until my senior year of high school, apart from what I read in school and the occasional Other Interesting Thing. (Hrm, Ella Enchanted, huh. A young girl who looks totally normal but is cursed, can't remember ever not having her "disease" and self-isolates to avoid having to face her condition. Fascinating. Found one that makes sense!)
I think I discovered the pattern with Disabled-Character-Books early even though I really couldn’t put it into words until, like, now. Ill characters seem to be used in literature as props. I’ve found very few books where the main character the one with the illness and I think there are several reasons for this: 1. healthy authors are not willing to presume to know what being unhealthy feels like. (Also, the few things I HAVE found suck, so I think in general healthy authors are correct in shying away from it.) 2. sick people tend to not have particularly exciting lives and 3. blah blah blah it’s the family and friends who blah blah blah. (No, really, I believe that #3 is totally true and valid and shiny, but we’ve all heard it before)
(And here’s the part where I try really hard not to get beat up by a cancer survivor.)
With an “epic” disease – the sort I both envy and fear – I think that life gets sort of snatched away from the victim for however many years or months, but eventually there are one of two outcomes: survival or death. (And then after that – uh, survival, that is – there can be relapses that are incredibly tragic and no one ever gets over these things completely and I would never, ever EVER minimize that sort of suffering.) But in my little un-epic disease (and chronic pain, and fibromyalgia and diabetes and asthma and endometriosis etc.) there may never be those months and years of lifelessness. I went to school and I never got held back and I even participated (kinda) in gym and (some) extracurriculars. But this is while my immune system was tearing me apart and I was supposed to have not-so-many years left pre-kidney-failure. But this does not lend itself well to literature because how on earth do you balance something that is has both absolutely no place in your world AND affects everything you do? Did I mention my head hurts?
So I cannot read books like My Sister’s Keeper (didn’t even try)...and have in general avoided any cancer-esque anything (me and cancer, you may have noticed, have an interesting relationship. Rest assured, not all of my refusal to deal with the matter is due to bitterness that people care about cancer and not me. Most of it is due to utter terror that I'm going to get it any second because, in an almost hilariously painful irony, all the years of chemo I had? Yeah, it increased my risk for certain cancers by like five billion. Okay, exageration, yes.)
You know what I can and do read though, is psychologically...messed up?...main characters. That’s where you get the real story, the half-conscious self-isolation, the still-going-through-life-but-invisibly-different, all of that. Like, try Fun Home, Alison Bechdel's graphic memoir about the death of her father and her coming out as a lesbian, the former of which happened too-close-for-comfort after the latter. In fact, creative nonfiction memoirs (as opposed to celebrity memoirs. I'm talking the people you know BECAUSE OF their memoirs, not people whose memoirs you read because you know them) tend to be fantastic for me because writers are so often, oh, what's the phrase? Fucked up? Yes. Or I obviously mentioned Ella Enchanted. Sometimes I go hardcore into psychologically harsh novels, but that can be hard too because it's also important for me that my characters are functioning like I'd like to be, and sometimes if I sink into that deep depression in a novel no one's functioning anymore and it is at once frustrating and discouraging.
Seeing a hole in the market (observational genius that I am) I finally started writing about lupus when I was a senior in high school. I wrote a couple short stories and a long-ass novel (I mean, it wasn’t good, let’s not get ahead of ourselves) with lupie main characters. Then I wrote several personal essays in college. And then I thought to myself, hmm, this is strange. I want to try and get some distance on this. Maybe I’ll make a non-main-character ill instead, and see if I can get both sides of this. After all, I’ve had to live with myself more than anyone.
Friends, I fell into my own trap, and my lovely little lupie character became a prop like everyone else’s sickies. Only, because I am painfully aware, I have the opportunity to shred myself and make it better.
So I guess I can’t complain. Well, yes, I can. And I do. But when I come across these stories/books/obnoxious-pretentious conversations, I have to shrug a little and say ‘well, at least they’re trying.’ And then I wander into places like this where I try to yell loud enough for people to hear.
Showing posts with label lupie. Show all posts
Showing posts with label lupie. Show all posts
Monday, August 23, 2010
Monday, August 9, 2010
Reactions
"I have lupus."
"Uh wha?"
"Long explanation of lupus."
Acceptable responses:
1) "Dude you are a wreck." (my personal preference)
2) (If you have the need to be sympathetic) "Aw I'm sorry. My aunt has that. It sucks."
Unacceptable responses:
1) "Oh my god. I am SO sorry. Oh man. But you're so young. That's just terrible. I'm so sorry. I mean, that's horrible - you're like, what, twenty? That's so unfair. Are you okay? It just sounds awful" with a teary look in your eyes.
While I do not want to speak for all lupies, I want to say for myself that I have plenty of guilt for worrying my family and friends and I really, really, REALLY do not need to feel as though I have just torn your heart apart. What's more, I have no way to react to that except to kind of smile, shrug, and say "oh it's fine, really." Yick.
One other thing: If you are, say, a dentist, and a lupie has just given you her medical history, and she happens to not be on meds, the best response is NOT "I'm sorry to hear you have lupus - but you've never exhibited any symptoms, right?" First of all, look at all the boxes I've checked for "things I have/have had" and second of all, whoa, way to cut me off at the knees.
Basically what I'm trying to say is that the dentist's office failed my reaction test. I had the practically-crying nurse (? the dentist equivelant of?) followed by the your-disease-is-just-a-concept-without-reality dentist.
"Uh wha?"
"Long explanation of lupus."
Acceptable responses:
1) "Dude you are a wreck." (my personal preference)
2) (If you have the need to be sympathetic) "Aw I'm sorry. My aunt has that. It sucks."
Unacceptable responses:
1) "Oh my god. I am SO sorry. Oh man. But you're so young. That's just terrible. I'm so sorry. I mean, that's horrible - you're like, what, twenty? That's so unfair. Are you okay? It just sounds awful" with a teary look in your eyes.
While I do not want to speak for all lupies, I want to say for myself that I have plenty of guilt for worrying my family and friends and I really, really, REALLY do not need to feel as though I have just torn your heart apart. What's more, I have no way to react to that except to kind of smile, shrug, and say "oh it's fine, really." Yick.
One other thing: If you are, say, a dentist, and a lupie has just given you her medical history, and she happens to not be on meds, the best response is NOT "I'm sorry to hear you have lupus - but you've never exhibited any symptoms, right?" First of all, look at all the boxes I've checked for "things I have/have had" and second of all, whoa, way to cut me off at the knees.
Basically what I'm trying to say is that the dentist's office failed my reaction test. I had the practically-crying nurse (? the dentist equivelant of?) followed by the your-disease-is-just-a-concept-without-reality dentist.
Thursday, August 5, 2010
The Mind/Body (dis)Connect Part II
So there's this weird thing that happened when I was diagnosed: I threw what was possibly the second biggest tantrum of my life (first being when I thought my cat had gone missing. We found her.) I sat on the floor of my living room and SCREAMED, friends, SCREAMED for who knows how long, because my parents tried to explain to me that "chronic" meant I would ALWAYS have lupus.
Oh, wait, that's not a weird reaction at all.
The weird part came afterwards, when I proceed to Not Cry and basically Not Worry and Not Acknowledge my disease at all. I didn't tell anyone I had it and somehow because of that (?) it was almost like I didn't. Apart from the swollen joints and the chemo and the not seeing people outside of school. At all.
And then I look back and I think to myself "What the fuck." Because at some point my freshman year of college I just totally sank down onto my dorm room floor and melted into the ground like it was the first time I'd ever heard the word "chronic" before. I was in remission, I'd taken myself off plaquenil (I'll do a fun story about my tendency to boycott medicine later), but I had a sinus infection and my knees hurt. That wasn't the FIRST time I'd cried about my diagnosis since The Tantrum. The FIRST time was my junior year of high school when I discovered a girl in my grade had a strange tattoo that was just a string of numbers. I found out from a friend that it was the date of her remission from leukemia, which she'd had when we were in 8th grade.
I cried then because I can't ever get that tattoo.
Now I'm bored of detailing my crying life, so I am moving on to this weird bit of mind/body disconnect. Why is it that back when I was really sick, I was mostly happy? It's only recently, way into "remission" that I've started to tiptoe towards the whole despair thing.
Two thoughts? The obvious one: I was too young when I was first diagnosed to understand the full weight of the thing. It's like death, right? Kids that young have no concept of eternity. So even though I flipped my 9-year-old shit the FIRST time forever was brought up, it didn't REALLY occur to me that forever is forever.
The weirder thought. So long as I was hovering near rock bottom, I didn't have to accept what was happening to me, because it HAD to get better and we were all working to make it better. Even though I was in pain and had treatments and was lonely because I'd wandered away from all my friends, I still had something to fight against. This current state is a lot harder for me, because I worry that I may have to accept that this is as good as it's gonna get. My bloodwork isn't abnormal enough to justify my being on any medication, but I'm still tired and my knees still hurt and I can't make a fist till an hour after I wake up.
I feel like we are raised not to settle for "good enough" and so I can't seem to accept that this is where I'm at and may be where I'll stay. I've tried to eat healthier and get more exercise (I walk the two miles home from work most days) and (sometimes) get more sleep (though I have pretty epic-ass insomnia), but none of that makes a particularly noticeable difference in how I feel. Partially because I'm bad at sticking with it - it's easier to slump into fatigue than to pick myself out of it.
I wonder (does anyone know?) if we pay much attention to the psychology of kids with chronic disease. Because, evidently, it can fuck with your mind. I know there are psychologists who specialize in terminal children. But I was never taken to a therapist till my senior year of high school when I think it was a little late. That may not be due to lack of therapists, it may just be because my parents have always been convinced that I am freakishly sane. Pause for laughter.
Next time: Something uplifting and hilarious!
Oh, wait, that's not a weird reaction at all.
The weird part came afterwards, when I proceed to Not Cry and basically Not Worry and Not Acknowledge my disease at all. I didn't tell anyone I had it and somehow because of that (?) it was almost like I didn't. Apart from the swollen joints and the chemo and the not seeing people outside of school. At all.
And then I look back and I think to myself "What the fuck." Because at some point my freshman year of college I just totally sank down onto my dorm room floor and melted into the ground like it was the first time I'd ever heard the word "chronic" before. I was in remission, I'd taken myself off plaquenil (I'll do a fun story about my tendency to boycott medicine later), but I had a sinus infection and my knees hurt. That wasn't the FIRST time I'd cried about my diagnosis since The Tantrum. The FIRST time was my junior year of high school when I discovered a girl in my grade had a strange tattoo that was just a string of numbers. I found out from a friend that it was the date of her remission from leukemia, which she'd had when we were in 8th grade.
I cried then because I can't ever get that tattoo.
Now I'm bored of detailing my crying life, so I am moving on to this weird bit of mind/body disconnect. Why is it that back when I was really sick, I was mostly happy? It's only recently, way into "remission" that I've started to tiptoe towards the whole despair thing.
Two thoughts? The obvious one: I was too young when I was first diagnosed to understand the full weight of the thing. It's like death, right? Kids that young have no concept of eternity. So even though I flipped my 9-year-old shit the FIRST time forever was brought up, it didn't REALLY occur to me that forever is forever.
The weirder thought. So long as I was hovering near rock bottom, I didn't have to accept what was happening to me, because it HAD to get better and we were all working to make it better. Even though I was in pain and had treatments and was lonely because I'd wandered away from all my friends, I still had something to fight against. This current state is a lot harder for me, because I worry that I may have to accept that this is as good as it's gonna get. My bloodwork isn't abnormal enough to justify my being on any medication, but I'm still tired and my knees still hurt and I can't make a fist till an hour after I wake up.
I feel like we are raised not to settle for "good enough" and so I can't seem to accept that this is where I'm at and may be where I'll stay. I've tried to eat healthier and get more exercise (I walk the two miles home from work most days) and (sometimes) get more sleep (though I have pretty epic-ass insomnia), but none of that makes a particularly noticeable difference in how I feel. Partially because I'm bad at sticking with it - it's easier to slump into fatigue than to pick myself out of it.
I wonder (does anyone know?) if we pay much attention to the psychology of kids with chronic disease. Because, evidently, it can fuck with your mind. I know there are psychologists who specialize in terminal children. But I was never taken to a therapist till my senior year of high school when I think it was a little late. That may not be due to lack of therapists, it may just be because my parents have always been convinced that I am freakishly sane. Pause for laughter.
Next time: Something uplifting and hilarious!
Thursday, July 22, 2010
We hates it, we hates the white face
One of the most exciting parts about lupus is a totally invisible sensitivity to sun that leads me to break out the Gollum voice. I don't actually burn too easily - I usually get a traditional first-sunny-day-of-spring burn, but I usually avoid the sun when I can.
I tend to resent anything I "have" to do. I don't mind putting sunscreen on in the middle of summer when I go to the beach,* but I am also supposed to wear it on rainy days, snowy days, and under florescent lights. My particular brand of bitterness is difficult to explain. I think it comes from my 9-year-old sense of what's not "fair." (I'll try and explain that better at not-1 a.m.)
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*I...I don't even own a bathing suit. But in a crazy, upside-down world...
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Summer fucks me up in two shifts: an end-of-summer flare, and a winter flare. I do not know why it works this way. It's been suggested that winter flares in lupies could be due to accumulated summer sun coming back to bite our asses in the winter. I feel my best in autumn, but that might also be because it's my favorite season, I go back to school, and I'm generally happier.
Regardless: Summer flare. Hello! Welcome. I've missed you. I have this rash on my elbow that's been there for five (?) years (yet every time I go to the doctor they say "dude what's this rash on your elbow?" "Doc, I've had that for five years." "Really?" "Yes." "Oh, well. Hell if I know what it is.") I'd be tempted to say it's a birthmark or stained skin or something, except that it gets darker the more sun I get, and even moves down my wrist. That's the first sign of the end of summer.* I stop sleeping, not so much because I'm in pain, but just due to killer insomnia coupled with that fatigue that hits you over the head and every time I blink it feels for a second like I am not going to open my eyes again.
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*This year, evidently, the middle of summer
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The oddest symptom I get (and I think it's a factor of fatigue, actually), is this fever-without-a-fever feeling. I am clammy and sweaty but my temperature's normal (a little low, which I guess is what we've considered normal for me. My blood pressure, too.)
This post was actually supposed to be a silly little jabber about form rejects for the lovely Rejectionist's un-contest - but I am worn out with back pain and sleepy. (I am too in love with The Rejectionist to try and write something for her in this state.)
Also, debt collectors are after me again because of a chest x-ray I got in October 2008. This is despite the fact that we settled this with the hospital a year ago. Every once in a while, this kind of thing reminds me of how inept I am at dealing with the practical aspects of being ill. I can't organize my doctor's appointments (things I should have already done this summer: eye doctor, nephrologist, physical therapy), I can't even FATHOM how I'm going to pay for myself later, because none of my life plans involve careers that offer health benefits. Just the thought of all this is enough to keep me up another hour. Eep!
It's estimated that having lupus costs over 20,000$ per year, combining missed pay and medical bills.
And please remember that, technically speaking, I am in remission. I'm not on any medication. Most of my blood work is within range. Others have a whole world of concerns beyond mine, and I remember my days of doctors every three weeks and chemo once a month and collapsing when I tried to get out of bed. It is extra infuriating to be off meds and still be lying here at 1:30 a.m., unable.to.sleep.
Tomorrow: Form rejects!
I tend to resent anything I "have" to do. I don't mind putting sunscreen on in the middle of summer when I go to the beach,* but I am also supposed to wear it on rainy days, snowy days, and under florescent lights. My particular brand of bitterness is difficult to explain. I think it comes from my 9-year-old sense of what's not "fair." (I'll try and explain that better at not-1 a.m.)
---
*I...I don't even own a bathing suit. But in a crazy, upside-down world...
---
Summer fucks me up in two shifts: an end-of-summer flare, and a winter flare. I do not know why it works this way. It's been suggested that winter flares in lupies could be due to accumulated summer sun coming back to bite our asses in the winter. I feel my best in autumn, but that might also be because it's my favorite season, I go back to school, and I'm generally happier.
Regardless: Summer flare. Hello! Welcome. I've missed you. I have this rash on my elbow that's been there for five (?) years (yet every time I go to the doctor they say "dude what's this rash on your elbow?" "Doc, I've had that for five years." "Really?" "Yes." "Oh, well. Hell if I know what it is.") I'd be tempted to say it's a birthmark or stained skin or something, except that it gets darker the more sun I get, and even moves down my wrist. That's the first sign of the end of summer.* I stop sleeping, not so much because I'm in pain, but just due to killer insomnia coupled with that fatigue that hits you over the head and every time I blink it feels for a second like I am not going to open my eyes again.
---
*This year, evidently, the middle of summer
---
The oddest symptom I get (and I think it's a factor of fatigue, actually), is this fever-without-a-fever feeling. I am clammy and sweaty but my temperature's normal (a little low, which I guess is what we've considered normal for me. My blood pressure, too.)
This post was actually supposed to be a silly little jabber about form rejects for the lovely Rejectionist's un-contest - but I am worn out with back pain and sleepy. (I am too in love with The Rejectionist to try and write something for her in this state.)
Also, debt collectors are after me again because of a chest x-ray I got in October 2008. This is despite the fact that we settled this with the hospital a year ago. Every once in a while, this kind of thing reminds me of how inept I am at dealing with the practical aspects of being ill. I can't organize my doctor's appointments (things I should have already done this summer: eye doctor, nephrologist, physical therapy), I can't even FATHOM how I'm going to pay for myself later, because none of my life plans involve careers that offer health benefits. Just the thought of all this is enough to keep me up another hour. Eep!
It's estimated that having lupus costs over 20,000$ per year, combining missed pay and medical bills.
And please remember that, technically speaking, I am in remission. I'm not on any medication. Most of my blood work is within range. Others have a whole world of concerns beyond mine, and I remember my days of doctors every three weeks and chemo once a month and collapsing when I tried to get out of bed. It is extra infuriating to be off meds and still be lying here at 1:30 a.m., unable.to.sleep.
Tomorrow: Form rejects!
Thursday, July 15, 2010
My Mind-Body (dis)connect, Part I
I've been thinking about this post for a while now, but it keeps getting pushed off by funny anecdotes from the publishing world or the more acute weirdnesses, which, incidentally, was about to put it off again. I was nearly knocked down by the second worst cramps in the past year or so. I walked the 40 minutes home from work because I couldn't imagine sitting on a train or a bus, but it was 85 degrees and I mentioned before that when the endometriosis attacks, it radiates down to my legs and it was a wobbly, dizzy walk.
But I've spent time here in this shiny little blog talking about my pain and trying to explain it, because I'm thinking it's not fair of me to be frustrated with how misunderstood my disease is if I can't put it out there in plain English. I can't make anyone feel how I feel, but "pain" is so vague and my favorite phrase - "my everything hurts!" - I usually say with a false, self-mocking whine, because while I am trying to be honest about how I feel, when people take me seriously I am very uncomfortable.
Why on earth should it feel like a lie? When I go to the doctor they ask me if I'm in any pain. I almost always say no. It's not true, of course, but I guess I mean that there's no pain I can expect them to fix. Or, perhaps, there's no pain bad enough that I'm willing to put time and energy into fixing it.
I've been to a couple of therapists, one at home my senior year of high school and then briefly at school. The therapists addressed my high school inability to hold onto healthy relationships. Both therapists were diagnosis-happy: they looooved to tell me what disorders I had and why, but (and perhaps this is a product of my being unreceptive) I felt they gave me no suggestions as to how to fix it. Their favorite is my little quirk of smelling and tasting Cytoxan years after my last treatment. They were so excited. They were all going into flashback-mode, giving me trauma disorders.
I found out later that a lot of lupus and cancer patients find that they can't get rid of the smell, that it will sneak up on them. I actually think what sets it of is a combination of sweat and alcohol smell, tinged with something else...urine or vomit, perhaps (yeah you're all running for the hills at this point). It's a smell combination that I'm extremely sensative to, and on weekends at college I hit on it more often that I'd like. I convert that smell somehow into Cytoxan and proceed to feel nauseous for a good 20-30 minutes.
That doesn't interest me, because that is a clear mind-body connect. 22 Cytoxan treatments when I was at a very maleable age (11ish) - it seems natural that I would be prone to this "flashback." I mention often the taste of the stuff, because the first time I had the treatment, my nurse gave me the last dose to take orally by squirting it into the back of my throat, and the second it touched my tongue my whole body rebelled and vomited, though I'd swallowed none of it. That taste works its way into my mouth any time I feel ill, and any time I think about it.
It's been suggested that the actual taste is the sour taste of adrenaline due to my intense fear of vomiting or the fact that I still have remnants of my young self's anxiety when I talk about these things.
These are still very closely connected, the mind and body, and all of this makes sense. Too much sense. It's almost boring.
What causes problems for me is the knowledge that I have had lupus for pretty much as long as I can remember. I mean, sure, I have memories from pre-age-9 (actually, I have a pretty long memory, my first being from when I was a little over 2 years old, a traumatic experience with a talking parrot). But we are not really people that young and we change so much between the ages of 9 and 20 that I HAVE to accept that being diagnosed must have in some ways defined who I am now. Now, keep in mind that i refused to tell people about my disease until I was 17. Does that sound like I was the type of person who was at all willing to be defined by it? No. I fought that so hard that, I think, it backfired a bit. The only astute thing my first therapist ever said to me was "You're doing okay now, I think, but you're falling a little and eventually you're going to hit the ground, and it's going to hurt." (This she said, perhaps talking out her ass, while I was quitting her. But whether she was blowing smoke or not, I guess she was kind of right.)
I do not want to let this post get too long so we'll call this the Setting the Stage post. The truth is that since Rituxan, which I went on at 14, the pain itself is no longer really my issue, except in the sense that it seems to constatly poke and prod just to remind me that I am just a little bit separate. (Or just to remind me that I have separated myself just a little.) I'm only 20, and I don't pretend to have any idea what I'm talking about, but next time I come back to this, I want to continue the (thrilling!) exploration of what it feels like, mentally, to grow up with a chronic illness.
But I've spent time here in this shiny little blog talking about my pain and trying to explain it, because I'm thinking it's not fair of me to be frustrated with how misunderstood my disease is if I can't put it out there in plain English. I can't make anyone feel how I feel, but "pain" is so vague and my favorite phrase - "my everything hurts!" - I usually say with a false, self-mocking whine, because while I am trying to be honest about how I feel, when people take me seriously I am very uncomfortable.
Why on earth should it feel like a lie? When I go to the doctor they ask me if I'm in any pain. I almost always say no. It's not true, of course, but I guess I mean that there's no pain I can expect them to fix. Or, perhaps, there's no pain bad enough that I'm willing to put time and energy into fixing it.
I've been to a couple of therapists, one at home my senior year of high school and then briefly at school. The therapists addressed my high school inability to hold onto healthy relationships. Both therapists were diagnosis-happy: they looooved to tell me what disorders I had and why, but (and perhaps this is a product of my being unreceptive) I felt they gave me no suggestions as to how to fix it. Their favorite is my little quirk of smelling and tasting Cytoxan years after my last treatment. They were so excited. They were all going into flashback-mode, giving me trauma disorders.
I found out later that a lot of lupus and cancer patients find that they can't get rid of the smell, that it will sneak up on them. I actually think what sets it of is a combination of sweat and alcohol smell, tinged with something else...urine or vomit, perhaps (yeah you're all running for the hills at this point). It's a smell combination that I'm extremely sensative to, and on weekends at college I hit on it more often that I'd like. I convert that smell somehow into Cytoxan and proceed to feel nauseous for a good 20-30 minutes.
That doesn't interest me, because that is a clear mind-body connect. 22 Cytoxan treatments when I was at a very maleable age (11ish) - it seems natural that I would be prone to this "flashback." I mention often the taste of the stuff, because the first time I had the treatment, my nurse gave me the last dose to take orally by squirting it into the back of my throat, and the second it touched my tongue my whole body rebelled and vomited, though I'd swallowed none of it. That taste works its way into my mouth any time I feel ill, and any time I think about it.
It's been suggested that the actual taste is the sour taste of adrenaline due to my intense fear of vomiting or the fact that I still have remnants of my young self's anxiety when I talk about these things.
These are still very closely connected, the mind and body, and all of this makes sense. Too much sense. It's almost boring.
What causes problems for me is the knowledge that I have had lupus for pretty much as long as I can remember. I mean, sure, I have memories from pre-age-9 (actually, I have a pretty long memory, my first being from when I was a little over 2 years old, a traumatic experience with a talking parrot). But we are not really people that young and we change so much between the ages of 9 and 20 that I HAVE to accept that being diagnosed must have in some ways defined who I am now. Now, keep in mind that i refused to tell people about my disease until I was 17. Does that sound like I was the type of person who was at all willing to be defined by it? No. I fought that so hard that, I think, it backfired a bit. The only astute thing my first therapist ever said to me was "You're doing okay now, I think, but you're falling a little and eventually you're going to hit the ground, and it's going to hurt." (This she said, perhaps talking out her ass, while I was quitting her. But whether she was blowing smoke or not, I guess she was kind of right.)
I do not want to let this post get too long so we'll call this the Setting the Stage post. The truth is that since Rituxan, which I went on at 14, the pain itself is no longer really my issue, except in the sense that it seems to constatly poke and prod just to remind me that I am just a little bit separate. (Or just to remind me that I have separated myself just a little.) I'm only 20, and I don't pretend to have any idea what I'm talking about, but next time I come back to this, I want to continue the (thrilling!) exploration of what it feels like, mentally, to grow up with a chronic illness.
Monday, July 12, 2010
Things That Are Badass.
1. PUBLISHING is BADASS. And the REASON it's badass is because of the three paper towels covered with blood that are now in the waste bin under my desk. Obviously, badassery is judged based on the opportunity for injury. I always suspected publishing was more than just soul-numbingly dumb mail. This mail was feisty. (EA's in-tray got me. It skimmed off a fat-grain-of-rice-sized bit of skin from my right middle finger. It then refused to stop bleeding for twenty minutes, just to mock me. I was too embarrassed to ask for a band-aide.)
2. CHILDREN are BADASS. I did fan mail today, and they made me laugh more than humor submissions. 60% of kids end their letters with "P.S. blah blah blah. P.P.S. what does P.S. mean?"
3. CRAZY PEOPLE are BADASS (I suppose.) This one woman, who I get submissions from every single mail day (twice a week) submitted SIX envelopes worth of stuff today. Not only that, but she managed to seal EVERY SINGLE envelope TO her submission. At first I thought she must have been really dumb but I've decided that six times must be deliberate. I therefore choose to believe that she has a secret and BADASS plan to take over the world, one incorrectly sealed envelope at a time.
4. ENTS are BADASS. There was a woman who submitted something today whose last name was Entwise. (It actually wasn't. But it began with "Ent" and so my point stands). So I am now watching Lord of the Rings, after which I will read Lord of the Rings and then I will hug an Ent.
I am going to tell you a fascinating story. My little brother, as a young child, had terrible dyslexia and ADHD, and he didn't learn to read until he was almost twelve. (Now, incidentally, he is both more intelligent and a better reader than I am. I, however, get better grades. So. So. So...um. Whatever. We'll leave my inferiority complex towards my little brother for another time.) In a way, this was a nice thing because my being sick led my brother to HATE me with every fiber of his being. Neither of us knew why this was - my mom thinks that worry turned into anger, because he didn't understand what was going on, he just knew that I wasn't fun and my parents weren't around. The fact that he couldn't read meant that my family read books aloud until I was ~12 or 13, carving out an hour or so every night where we weren't fighting.
The book we were reading when I was eleven was Lord of the Rings, which we got from my grandparents. The day after we finished The Fellowship of the Ring, we went out and saw the movie. (A bit of an issue, actually, since they went and tacked on the beginning of TT to FotR which meant that I was like WTF why is Boromir dead?) When the movie came out, it was one of maybe four videos that we owned and I watched it quite a bit.
Skippppp forward. When I was...twelve? Oh who knows. When I was a little older I got put on Cytoxan which is a DISGUSTING chemotherapy. It's a twelve hour treatment, so I was in the hospital all day long. I started bringing LotR to the hospital with me. By the time I ended the treatments I was watching all three DVDs in a day once a month. (I was on Cytoxan for the absolute maximum number of treatments you're allowed to give a person.)
I probably had a point. I think I was considering myself as a Creature of Habit. For the longest time, i had a hard time watching new movies or reading new books, probably because I so desperately needed stability. So when I, now a TOTALLY SANE (pause for laughter) human, curl up to watch Lord of the Rings I can feel my entire being relax. Another advantage of 11 years...I know, for the most part, what works for me.
Next time: I avenge myself upon the Devilish In-Tray.
2. CHILDREN are BADASS. I did fan mail today, and they made me laugh more than humor submissions. 60% of kids end their letters with "P.S. blah blah blah. P.P.S. what does P.S. mean?"
3. CRAZY PEOPLE are BADASS (I suppose.) This one woman, who I get submissions from every single mail day (twice a week) submitted SIX envelopes worth of stuff today. Not only that, but she managed to seal EVERY SINGLE envelope TO her submission. At first I thought she must have been really dumb but I've decided that six times must be deliberate. I therefore choose to believe that she has a secret and BADASS plan to take over the world, one incorrectly sealed envelope at a time.
4. ENTS are BADASS. There was a woman who submitted something today whose last name was Entwise. (It actually wasn't. But it began with "Ent" and so my point stands). So I am now watching Lord of the Rings, after which I will read Lord of the Rings and then I will hug an Ent.
I am going to tell you a fascinating story. My little brother, as a young child, had terrible dyslexia and ADHD, and he didn't learn to read until he was almost twelve. (Now, incidentally, he is both more intelligent and a better reader than I am. I, however, get better grades. So. So. So...um. Whatever. We'll leave my inferiority complex towards my little brother for another time.) In a way, this was a nice thing because my being sick led my brother to HATE me with every fiber of his being. Neither of us knew why this was - my mom thinks that worry turned into anger, because he didn't understand what was going on, he just knew that I wasn't fun and my parents weren't around. The fact that he couldn't read meant that my family read books aloud until I was ~12 or 13, carving out an hour or so every night where we weren't fighting.
The book we were reading when I was eleven was Lord of the Rings, which we got from my grandparents. The day after we finished The Fellowship of the Ring, we went out and saw the movie. (A bit of an issue, actually, since they went and tacked on the beginning of TT to FotR which meant that I was like WTF why is Boromir dead?) When the movie came out, it was one of maybe four videos that we owned and I watched it quite a bit.
Skippppp forward. When I was...twelve? Oh who knows. When I was a little older I got put on Cytoxan which is a DISGUSTING chemotherapy. It's a twelve hour treatment, so I was in the hospital all day long. I started bringing LotR to the hospital with me. By the time I ended the treatments I was watching all three DVDs in a day once a month. (I was on Cytoxan for the absolute maximum number of treatments you're allowed to give a person.)
I probably had a point. I think I was considering myself as a Creature of Habit. For the longest time, i had a hard time watching new movies or reading new books, probably because I so desperately needed stability. So when I, now a TOTALLY SANE (pause for laughter) human, curl up to watch Lord of the Rings I can feel my entire being relax. Another advantage of 11 years...I know, for the most part, what works for me.
Next time: I avenge myself upon the Devilish In-Tray.
Thursday, July 8, 2010
The Wolf
The actual reason it's called lupus is because of the malar rash, which is odd, because we actually call that, colloquially, the "butterfly rash." One of the first people I ever told about my lupus (when, by the way, I was fourteen, so we're talking five years in and 3 people knew besides my family) joked that maybe it was called lupus because it feels like a wolf attack.
I have never tried to write while actively in pain and as a consequence it's been very hard for me to describe how it feels. To quote the pain scale, eh, again, "My nerves cannot, or will not, imagine past pain - and this, I think, is for the best. Nerves simply register, they do not invent. ...I have discovered that the pain I am in is always the worst pain imaginable."
But at this very moment I write to you in not the worst pain imaginable. Even though I cannot, perhaps, exactly remember what worse pain feels like, I know that this is not the worst. But it is something more than "usual" - I can't sleep, and thinking this post out is hard. But I am so used to writing abstractly about my disease and I want to try and write something in the moment. The description will be crude, most likely.
My wrists have sharp pains that feel like they're going inward, towards the center. They feel warm but don't look swollen. My fingers are tight and they shake when I try and straighten them. I'm holding my shoulders even higher than usual and I can't really tell why, except that my left ear has a cold pain deep down and perhaps it is a reaction to that. My lower back is sore, probably from my mattress. I finally put my mattress pad from school on one half of my full sized bed, and hopefully that will help. My back pain radiates to my abdomen, and I have had "cramps" for three weeks, though my period ended two weeks ago. This is a warm pain and it's not new tonight. My hips have a sharp pain, mostly going outwards, like a spike but smaller, and I can't seem to satisfy them. My knees and ankles have shooting pains going down. My right knee, on the outside, feels like I've knelt on something lego-shaped, but there's no mark. I also have a headache and my eyelids are clicking when I blink, which my mom says is because I'm dehydrated.
I don't know how much of this is normal. It may all be from my mattress, from exhaustion, from the kid I babysat for who coughed on my face multiple times: it could be a virus. My wrists and fingers and elbows could easily be from how much typing I've done for internship lately (once they found out that I'm a pretty freakishly fast typer when I need to be they started giving me long-ass transcriptions) because the keyboard is a little high up for my wrists and the keys need to be pressed just a little too hard.
I once got up the courage to be pathetic and I asked a friend if he ever felt 100% comfortable, and he told me no. So I'm not sure where I can get off whining about "chronic" pain when most of the time it is no more than a heaviness in my body. Even when I go to the doctor, unless something is bad enough that I need medicine for it (and I do not take painkillers unless I HAVE to), when they ask if I've got any pain I say "no." Sometimes I'll try - "my fingers hurt" "rate that" "5" always five, the middle. They've never offered much of a solution, so I mostly don't do it.
Anyway, that's a little window into the Here and Now of this crazy condition. Even though I started telling people about my illness once I started college (ages 9 - 18 very VERY few people were told; I was embarrassed) I still have trouble talking about it when it is acute. I don't mind people knowing the abstract, but I dislike the particulars. I find them slightly tedious and endlessly obnoxious. But hey, it's the internet, and it's hard for people to understand a disease when what it feels like is never explained.
But again, this isn't a terribly bad night. I will fall asleep eventually. It's just a matter of knowing how to make yourself tired enough to drift off before the wolf bites.
(that was very artsy and dramatic, eh?)
I have never tried to write while actively in pain and as a consequence it's been very hard for me to describe how it feels. To quote the pain scale, eh, again, "My nerves cannot, or will not, imagine past pain - and this, I think, is for the best. Nerves simply register, they do not invent. ...I have discovered that the pain I am in is always the worst pain imaginable."
But at this very moment I write to you in not the worst pain imaginable. Even though I cannot, perhaps, exactly remember what worse pain feels like, I know that this is not the worst. But it is something more than "usual" - I can't sleep, and thinking this post out is hard. But I am so used to writing abstractly about my disease and I want to try and write something in the moment. The description will be crude, most likely.
My wrists have sharp pains that feel like they're going inward, towards the center. They feel warm but don't look swollen. My fingers are tight and they shake when I try and straighten them. I'm holding my shoulders even higher than usual and I can't really tell why, except that my left ear has a cold pain deep down and perhaps it is a reaction to that. My lower back is sore, probably from my mattress. I finally put my mattress pad from school on one half of my full sized bed, and hopefully that will help. My back pain radiates to my abdomen, and I have had "cramps" for three weeks, though my period ended two weeks ago. This is a warm pain and it's not new tonight. My hips have a sharp pain, mostly going outwards, like a spike but smaller, and I can't seem to satisfy them. My knees and ankles have shooting pains going down. My right knee, on the outside, feels like I've knelt on something lego-shaped, but there's no mark. I also have a headache and my eyelids are clicking when I blink, which my mom says is because I'm dehydrated.
I don't know how much of this is normal. It may all be from my mattress, from exhaustion, from the kid I babysat for who coughed on my face multiple times: it could be a virus. My wrists and fingers and elbows could easily be from how much typing I've done for internship lately (once they found out that I'm a pretty freakishly fast typer when I need to be they started giving me long-ass transcriptions) because the keyboard is a little high up for my wrists and the keys need to be pressed just a little too hard.
I once got up the courage to be pathetic and I asked a friend if he ever felt 100% comfortable, and he told me no. So I'm not sure where I can get off whining about "chronic" pain when most of the time it is no more than a heaviness in my body. Even when I go to the doctor, unless something is bad enough that I need medicine for it (and I do not take painkillers unless I HAVE to), when they ask if I've got any pain I say "no." Sometimes I'll try - "my fingers hurt" "rate that" "5" always five, the middle. They've never offered much of a solution, so I mostly don't do it.
Anyway, that's a little window into the Here and Now of this crazy condition. Even though I started telling people about my illness once I started college (ages 9 - 18 very VERY few people were told; I was embarrassed) I still have trouble talking about it when it is acute. I don't mind people knowing the abstract, but I dislike the particulars. I find them slightly tedious and endlessly obnoxious. But hey, it's the internet, and it's hard for people to understand a disease when what it feels like is never explained.
But again, this isn't a terribly bad night. I will fall asleep eventually. It's just a matter of knowing how to make yourself tired enough to drift off before the wolf bites.
(that was very artsy and dramatic, eh?)
Tuesday, June 29, 2010
Oh, hi there.
So it's been more than a week. Ooph. I would start off with some long, boring lecture about Fatigue and its Effect on Life and about the Dazy Hazy Lupus Brain but, see, no. Plus, the real reasons I did not update last week were:
1. I am lazy (dazy hazy) and preferred to watch soccer and West Wing and basically be the biggest couch potato ever to avoid walking the earth (40% of my excuse)
2. I am not settling into this whole 9-5 job thing well at all, hence the Fatigue (blah blah blah) (10%)
3. I think of things to say all day long and then I sit in front of my computer and have NO CLUE HOW TO START (50%)
I should be used to getting over this due to my (big, useful, career-starting) creative writing major. But, alack, no.
While we're not on the subject of Hazy Dazy Lupus Brain, I thought I would start with an exciting experience I had getting a call from someone or other in the pediatric rheumatology (that being...holy shit, guys, I don't know what rheumatology is. Lupus and arthritis? I mean, I know I go to them. Okay, here. Devoted to the study of rheumatic diseases. Hope that cleared it up for ya.)Right, as I was saying. I got a call from someone or other in the pediatric rheumatology department saying ohhh hiiii will you take a survey about how rheumies talk to girl-children with lupus about pregnancy and birth control and its effect on lupus and lupus' effect on it?
I was watching the world cup and could not possibly have been less interested, but said sure! anyway. Then she did a vocal double-take when I told her I was twenty. I really need to back slowly away from the kid-rheumies but, really, I'm too lazy. I don't like my doctor at all either, I'm seriously just too lazy to switch.
So actually, my Rheumy has never even touched on the subject of pregnancy with me, and the only time she's mentioned birth control was to get mad at my obgyn for prescribing it to me. This is all a little annoying, for the following reasons:
1. I have had soul-numbingly painful cramps since I was about 16. Like, cannot-walk-across-the-room-to-get-the-Advil level pain. Like, repeatedly-miss-school-and-stay-up-for-36-hours-straight level pain. And my rheumy was kind of like well, whatever, try not to take Advil it'll hurt your kidneys.
2. I found out WHY when I was seventeen, because of the aforementioned lemon-sized-cyst on my ovary. When they did the surgery (prepare for me to jabber for a bit because this was just SO COOL [that was not even sarcastic, I swear]), they did a micro-somethingorother. That (very technical term) means that there were three incisions: one on either side of my abdomen, right above my pelvis, and one slightly larger on right at the top of my belly button. Basically, one of the pelvic ones was for a teeny little camera, and one was for the teeny little knife. Then they cut the thinger and pulled it out through the belly button one. Okay, point: THERE WAS A TEENY LITTLE CAMERA INSIDE MY ABDOMEN. So when I heard this from my lovely anesthesiologists who came back to joke with me pre-surgery (they were the least obnoxious jokers ever, too), I was like AWESOME DUDE will you take a picture? And they told me they would. What's more, they told me there would be a video of the whole surgery from the inside and they would add music.
They never did.
But I did get pictures!
Where was this leading? Right. Cyst removed successfully, ovary left intact (hooray.) When I woke up, the doctor told me I have a condition called endometriosis, explaining it thus: "BTDUBZ, we found a SHIT TON of endometrial cells basically tying your ovaries to your uterus. There's probably a SHIT TON more scar tissue inside your uterus, probably due to all the chemo you've been on plus the fact that your immune system likes to Munch. That's why you get such terrible cramps. Also why your cramps radiate down your legs. Oh, also, you can probably not get pregnant." And my response was something along the lines of "and you left my uterus in there, why?"
3. So, I found out why I GOT the cramps but still no one told me there was anything I could do about them until a year later when I went for a follow-up to make sure, I assume, that my entire reproductive system hadn't fallen out. THEN my obgyn was like right, birth control, here you go. And it WORKED, ladies and gentlemen.
4. THEN my rheumy got all pissy and told me that birth control screws with your hormones and could make my lupus worse.
It actually made it better. My mom finally pointed out to me that a year ago was about when I started feeling worse - around the same time I went off birth control. While it COULD have sent my immune system into a frenzy, it seems like it actually leveled it out. Result of doctor's appointment yesterday: prescription!
My own personal conclusion from the survey I had to take: Doctors should probably discuss these things with their girl-lupies more. We don't necessarily think to ask when we are young and not dating because we're too sleepy to look at male-types, but let's just say for the sake of hyperbole that my entire high school career consisted of having unprotected sex with every man I saw - it would've been nice to know that screwing with my hormones via growing a baby could have been Bad.
Tomorrow: my career as a test-driver for crafts projects aimed for ages 6-9! (I have skillz, yo.)
1. I am lazy (dazy hazy) and preferred to watch soccer and West Wing and basically be the biggest couch potato ever to avoid walking the earth (40% of my excuse)
2. I am not settling into this whole 9-5 job thing well at all, hence the Fatigue (blah blah blah) (10%)
3. I think of things to say all day long and then I sit in front of my computer and have NO CLUE HOW TO START (50%)
I should be used to getting over this due to my (big, useful, career-starting) creative writing major. But, alack, no.
While we're not on the subject of Hazy Dazy Lupus Brain, I thought I would start with an exciting experience I had getting a call from someone or other in the pediatric rheumatology (that being...holy shit, guys, I don't know what rheumatology is. Lupus and arthritis? I mean, I know I go to them. Okay, here. Devoted to the study of rheumatic diseases. Hope that cleared it up for ya.)Right, as I was saying. I got a call from someone or other in the pediatric rheumatology department saying ohhh hiiii will you take a survey about how rheumies talk to girl-children with lupus about pregnancy and birth control and its effect on lupus and lupus' effect on it?
I was watching the world cup and could not possibly have been less interested, but said sure! anyway. Then she did a vocal double-take when I told her I was twenty. I really need to back slowly away from the kid-rheumies but, really, I'm too lazy. I don't like my doctor at all either, I'm seriously just too lazy to switch.
So actually, my Rheumy has never even touched on the subject of pregnancy with me, and the only time she's mentioned birth control was to get mad at my obgyn for prescribing it to me. This is all a little annoying, for the following reasons:
1. I have had soul-numbingly painful cramps since I was about 16. Like, cannot-walk-across-the-room-to-get-the-Advil level pain. Like, repeatedly-miss-school-and-stay-up-for-36-hours-straight level pain. And my rheumy was kind of like well, whatever, try not to take Advil it'll hurt your kidneys.
2. I found out WHY when I was seventeen, because of the aforementioned lemon-sized-cyst on my ovary. When they did the surgery (prepare for me to jabber for a bit because this was just SO COOL [that was not even sarcastic, I swear]), they did a micro-somethingorother. That (very technical term) means that there were three incisions: one on either side of my abdomen, right above my pelvis, and one slightly larger on right at the top of my belly button. Basically, one of the pelvic ones was for a teeny little camera, and one was for the teeny little knife. Then they cut the thinger and pulled it out through the belly button one. Okay, point: THERE WAS A TEENY LITTLE CAMERA INSIDE MY ABDOMEN. So when I heard this from my lovely anesthesiologists who came back to joke with me pre-surgery (they were the least obnoxious jokers ever, too), I was like AWESOME DUDE will you take a picture? And they told me they would. What's more, they told me there would be a video of the whole surgery from the inside and they would add music.
They never did.
But I did get pictures!
Where was this leading? Right. Cyst removed successfully, ovary left intact (hooray.) When I woke up, the doctor told me I have a condition called endometriosis, explaining it thus: "BTDUBZ, we found a SHIT TON of endometrial cells basically tying your ovaries to your uterus. There's probably a SHIT TON more scar tissue inside your uterus, probably due to all the chemo you've been on plus the fact that your immune system likes to Munch. That's why you get such terrible cramps. Also why your cramps radiate down your legs. Oh, also, you can probably not get pregnant." And my response was something along the lines of "and you left my uterus in there, why?"
3. So, I found out why I GOT the cramps but still no one told me there was anything I could do about them until a year later when I went for a follow-up to make sure, I assume, that my entire reproductive system hadn't fallen out. THEN my obgyn was like right, birth control, here you go. And it WORKED, ladies and gentlemen.
4. THEN my rheumy got all pissy and told me that birth control screws with your hormones and could make my lupus worse.
It actually made it better. My mom finally pointed out to me that a year ago was about when I started feeling worse - around the same time I went off birth control. While it COULD have sent my immune system into a frenzy, it seems like it actually leveled it out. Result of doctor's appointment yesterday: prescription!
My own personal conclusion from the survey I had to take: Doctors should probably discuss these things with their girl-lupies more. We don't necessarily think to ask when we are young and not dating because we're too sleepy to look at male-types, but let's just say for the sake of hyperbole that my entire high school career consisted of having unprotected sex with every man I saw - it would've been nice to know that screwing with my hormones via growing a baby could have been Bad.
Tomorrow: my career as a test-driver for crafts projects aimed for ages 6-9! (I have skillz, yo.)
Monday, June 21, 2010
Let's talk about toilets
Just for a second.
See, toilets these days basically run my life. Your lowly intern has not yet been given a key. We keep the door to the meta-office locked (you know, the one that holds the Real Editor's offices and the Lowly Peoples' cubicles, and the lowly intern's shoe-box that, it has been suggested, could be made into a really baller fort if I brought in some old sheets). And somehow, even though your lowly intern unlocks that door before going to the bathroom, the door always seems to be locked again when your lowly intern gets back. Then I have to beg the receptionist to let me in, and she laughs at me.
Also, if I go around lunchtime I get locked out of the whole meta-meta office, and then to get in I have to ring the doorbell. Well, theoretically. The one time that happened, I just went to lunch with the bathroom key.
Lastly, the toilet in the office building is really freaking tall. Like, my toes barely touch the floor. What is up with that? I am short, but I am not THAT short, and there is something really unsatisfying about peeing with your feet off the ground.
This was a long way of saying, I went to the train station to pee today. THAT toilet was an overachieving freak and flushed itself four times in the midst of a 15 second pee break.
I'm done talking about toilets now.
Some Lupie news: Lady Gaga is auctioning off the necklace she wore in her Poker Face video. Proceeds will go to the Lupus Foundation of America. Thanks, Lady Gaga! I liked you before, now I kind of love you! Information
15 blood tests: Mostly normal, or at least in the same place they were a year ago. In the interest of full disclosure, I did not hear the whole message the nurse practitioner left on my phone due to: she mutters, and I kept trying to listen to it outside in the traffic under the El trains. I got as far as C3, C4, ANA are all basically in range (ANA is a big factor in diagnosing, c3 and c4, I have no idea what they are but I know that their refusal to be normal was what led to my being shoved on Rituxan in my 14th year of life and 5th year of lupus), but I have yet to get as far as kidneys in the message.
You will find it strange to hear that this is frustrating to me. I have been feeling off for a year or so, and my blood tests refuse to show any evidence of this, and therefore there continues to be nothing we can do about it. Furthermore, I'm not allowed to take ibuprofin because it's hard on the kidneys. Ibuprofin doesn't work well anyway, since I spent too many years taking 800 mg three-four times a day. But they won't give me anything stronger because my doctor doesn't trust me to take meds like a responsible person and my blood tests do not show any reason for me to be in pain except for 11 years of my own immune system munching on my muscles and joints. I mean, I am not in BAD pain. It would just be nice to have a clear problem with a clear solution.
Pause for riotous laughter at the implication that there is ever a "clear" anything where my body is concerned.
In other news, spiders were fighting outside one of the editor's window yesterday. We were picking contest winners. By which I mean, watching a female try and devour her potential mate, who then fled.
And, there is nothing more fun than being handed a box of submissions and being told "This is our new first reader's audition box. He wasn't allowed to reject anything. I'd go make some copies of your form reject."
51 suggestions, I passed 13 on. Of those 13, I liked 2 okay, 5 were totally adequate, 3 I did not like but thought someone else might, 3 I hated but thought they had a good topic so if they were, like, totally rewritten they could be good.
I did, indeed, have to make more copies of the form reject.
And all this while stalling having to pee so I wouldn't get locked out.
Some suggestions:
1. Do not title a poem for 3-6 year olds "High." Do not, in it, mention not being able to see straight and request something relaxing. I do not care if the end point is that you like music, and music makes you high.
2. I love my grandmother as much as anyone. And I probably love your grandmother too. In general, I am a big fan of grandmothers. However, I cannot think of a single grandmother I would want to see in a Tinkerbell outfit.
Today, before 10 a.m. my dress strap snapped. See, I have this problem where I carry my shoulders kind of high, especially when I am tense which is not, you know, uncommon with me. And so when I have non-stretchy kind of crappy straps, they tend to break. And then they tend to be really hard to tie back together and I tend to spend the rest of my day trying to keep my shoulders down because there are other places on that strap not to mention a whole other strap that's wearing thin. When I went to the train station to pee, I cannot even BEGIN to tell you how attractive I felt.
Emily, since I know you are reading this, you should know that the wallet you made me gets me hit on infinitely more often than my good looks and charm 'round these parts. My good looks and charm: 0. The wallet you made me: 3.
See, toilets these days basically run my life. Your lowly intern has not yet been given a key. We keep the door to the meta-office locked (you know, the one that holds the Real Editor's offices and the Lowly Peoples' cubicles, and the lowly intern's shoe-box that, it has been suggested, could be made into a really baller fort if I brought in some old sheets). And somehow, even though your lowly intern unlocks that door before going to the bathroom, the door always seems to be locked again when your lowly intern gets back. Then I have to beg the receptionist to let me in, and she laughs at me.
Also, if I go around lunchtime I get locked out of the whole meta-meta office, and then to get in I have to ring the doorbell. Well, theoretically. The one time that happened, I just went to lunch with the bathroom key.
Lastly, the toilet in the office building is really freaking tall. Like, my toes barely touch the floor. What is up with that? I am short, but I am not THAT short, and there is something really unsatisfying about peeing with your feet off the ground.
This was a long way of saying, I went to the train station to pee today. THAT toilet was an overachieving freak and flushed itself four times in the midst of a 15 second pee break.
I'm done talking about toilets now.
Some Lupie news: Lady Gaga is auctioning off the necklace she wore in her Poker Face video. Proceeds will go to the Lupus Foundation of America. Thanks, Lady Gaga! I liked you before, now I kind of love you! Information
15 blood tests: Mostly normal, or at least in the same place they were a year ago. In the interest of full disclosure, I did not hear the whole message the nurse practitioner left on my phone due to: she mutters, and I kept trying to listen to it outside in the traffic under the El trains. I got as far as C3, C4, ANA are all basically in range (ANA is a big factor in diagnosing, c3 and c4, I have no idea what they are but I know that their refusal to be normal was what led to my being shoved on Rituxan in my 14th year of life and 5th year of lupus), but I have yet to get as far as kidneys in the message.
You will find it strange to hear that this is frustrating to me. I have been feeling off for a year or so, and my blood tests refuse to show any evidence of this, and therefore there continues to be nothing we can do about it. Furthermore, I'm not allowed to take ibuprofin because it's hard on the kidneys. Ibuprofin doesn't work well anyway, since I spent too many years taking 800 mg three-four times a day. But they won't give me anything stronger because my doctor doesn't trust me to take meds like a responsible person and my blood tests do not show any reason for me to be in pain except for 11 years of my own immune system munching on my muscles and joints. I mean, I am not in BAD pain. It would just be nice to have a clear problem with a clear solution.
Pause for riotous laughter at the implication that there is ever a "clear" anything where my body is concerned.
In other news, spiders were fighting outside one of the editor's window yesterday. We were picking contest winners. By which I mean, watching a female try and devour her potential mate, who then fled.
And, there is nothing more fun than being handed a box of submissions and being told "This is our new first reader's audition box. He wasn't allowed to reject anything. I'd go make some copies of your form reject."
51 suggestions, I passed 13 on. Of those 13, I liked 2 okay, 5 were totally adequate, 3 I did not like but thought someone else might, 3 I hated but thought they had a good topic so if they were, like, totally rewritten they could be good.
I did, indeed, have to make more copies of the form reject.
And all this while stalling having to pee so I wouldn't get locked out.
Some suggestions:
1. Do not title a poem for 3-6 year olds "High." Do not, in it, mention not being able to see straight and request something relaxing. I do not care if the end point is that you like music, and music makes you high.
2. I love my grandmother as much as anyone. And I probably love your grandmother too. In general, I am a big fan of grandmothers. However, I cannot think of a single grandmother I would want to see in a Tinkerbell outfit.
Today, before 10 a.m. my dress strap snapped. See, I have this problem where I carry my shoulders kind of high, especially when I am tense which is not, you know, uncommon with me. And so when I have non-stretchy kind of crappy straps, they tend to break. And then they tend to be really hard to tie back together and I tend to spend the rest of my day trying to keep my shoulders down because there are other places on that strap not to mention a whole other strap that's wearing thin. When I went to the train station to pee, I cannot even BEGIN to tell you how attractive I felt.
Emily, since I know you are reading this, you should know that the wallet you made me gets me hit on infinitely more often than my good looks and charm 'round these parts. My good looks and charm: 0. The wallet you made me: 3.
Friday, June 18, 2010
Friday's a Day for Cheese and Sex
Well, this used to be my (hilarious) joke at school while I made sandwiches/smoothies and craved cheese on Fridays. I don't actually have any cheese in the house and I've got no friends, let alone a willing feller, 'round these parts. On the other hand, I will have pizza tonight and I'm still reading the 18th century (seriously, did they EVER get dressed?) so I think the sentiment holds.
Well, I am done with my first week of Submissions Reading, Photocopying, Filing, and Reviewing Kid's Music.
(I can't tie my shoes
I can't tie my shoes
How do grown-ups do it
when it just gives me the blues?
Oh, I'm never so confused
as when I try to tie my shoes.)
I made it through a good 15 "humor" submissions and an enormous stack of ~50 or so January submissions that were sent back from a first reader who quit unexpectedly without sifting through the Crazies. I got to sift through the crazies. A few notes, for anyone considering submitting to a magazine, or, really, anywhere.
1. Loser Boy is sad because Pretty Girl is pretty and Loser Boy does not know how to talk to her. Luckily, Substitute teacher, who is a little bit like Loser Boy because he is like a Loser Teacher and the kids make fun of him, gives Loser Boy 4 paragraphs of life lessons and lots of Perspective. Loser Boy sees the light, recognizes that he will have lots of Regret if he does not talk to Pretty Girl NOW. Talks to Pretty girl. THIS IS NOT HUMOR.
2. Loser Boy #2 does not like sports. Dad likes sports. Dad makes Loser Boy #2 do sports. Loser Boy #2 does not want to do sports. Dad says without sports, will send kid to "Athletic School." Loser Kid #2 sees the light, does sports. THIS IS ALSO NOT HUMOR.
3. People expect to be faced with lots of Rich Infidels in Africa. Instead, find Semi-Human Faceless People, surrounded by Goldfish that Fly. Yeah, I don't even know. This was not a humor submission. I could not even finish it.
4. You cannot stop me from sending you a rejection, I'm sorry. You cannot stop me from sending you a rejection, not even if you
a) include a self-addressed stamped envelope that does not seal (newsflash: we own tape)
b) include an SASE that is empty and sealed (really?)
c) fail to include an SASE
I understand. I understand that humor is hard, and writing is hard. And writing for kids is really hard. I would not attempt it. It is just that "humor" does not mean "nothing terrible happens." All I ask, all I ask is for one chortle. A small one. How about a snicker?
***
Well, I am still on my mother's computer, which has deleted this post once and a half. Best Buy still hasn't called to update me on McGillicudy's transplant (new screen!) Speaking of people who have not called to update my on things, still no word on blood tests. Called nurse today, was politely informed that she is not in on Tuesdays and Fridays.
It's interesting to check out other lupus blogs, by the way. There's the official blog of the lupus foundation at Their Official Site; they have a long list of other blogs on the side. The thing that's always been a problem on my end is hardly any people my age write (an exception). Even those few who do, though, tend to be lupus n00bs. I am a veteran. Lupus and I have passed our tin? bronze? anniversary (what's 10 years?) which is actually longer than most of the adult-bloggers have had it, too.
So I try to make it interesting for any potential blog-followers, but I forget that what is totally un-novel to me is novel to normal people or even Lupie n00bs.
However, in case you were wondering, those IV machines? Fantastic scooters.
Well, I am done with my first week of Submissions Reading, Photocopying, Filing, and Reviewing Kid's Music.
(I can't tie my shoes
I can't tie my shoes
How do grown-ups do it
when it just gives me the blues?
Oh, I'm never so confused
as when I try to tie my shoes.)
I made it through a good 15 "humor" submissions and an enormous stack of ~50 or so January submissions that were sent back from a first reader who quit unexpectedly without sifting through the Crazies. I got to sift through the crazies. A few notes, for anyone considering submitting to a magazine, or, really, anywhere.
1. Loser Boy is sad because Pretty Girl is pretty and Loser Boy does not know how to talk to her. Luckily, Substitute teacher, who is a little bit like Loser Boy because he is like a Loser Teacher and the kids make fun of him, gives Loser Boy 4 paragraphs of life lessons and lots of Perspective. Loser Boy sees the light, recognizes that he will have lots of Regret if he does not talk to Pretty Girl NOW. Talks to Pretty girl. THIS IS NOT HUMOR.
2. Loser Boy #2 does not like sports. Dad likes sports. Dad makes Loser Boy #2 do sports. Loser Boy #2 does not want to do sports. Dad says without sports, will send kid to "Athletic School." Loser Kid #2 sees the light, does sports. THIS IS ALSO NOT HUMOR.
3. People expect to be faced with lots of Rich Infidels in Africa. Instead, find Semi-Human Faceless People, surrounded by Goldfish that Fly. Yeah, I don't even know. This was not a humor submission. I could not even finish it.
4. You cannot stop me from sending you a rejection, I'm sorry. You cannot stop me from sending you a rejection, not even if you
a) include a self-addressed stamped envelope that does not seal (newsflash: we own tape)
b) include an SASE that is empty and sealed (really?)
c) fail to include an SASE
I understand. I understand that humor is hard, and writing is hard. And writing for kids is really hard. I would not attempt it. It is just that "humor" does not mean "nothing terrible happens." All I ask, all I ask is for one chortle. A small one. How about a snicker?
***
Well, I am still on my mother's computer, which has deleted this post once and a half. Best Buy still hasn't called to update me on McGillicudy's transplant (new screen!) Speaking of people who have not called to update my on things, still no word on blood tests. Called nurse today, was politely informed that she is not in on Tuesdays and Fridays.
It's interesting to check out other lupus blogs, by the way. There's the official blog of the lupus foundation at Their Official Site; they have a long list of other blogs on the side. The thing that's always been a problem on my end is hardly any people my age write (an exception). Even those few who do, though, tend to be lupus n00bs. I am a veteran. Lupus and I have passed our tin? bronze? anniversary (what's 10 years?) which is actually longer than most of the adult-bloggers have had it, too.
So I try to make it interesting for any potential blog-followers, but I forget that what is totally un-novel to me is novel to normal people or even Lupie n00bs.
However, in case you were wondering, those IV machines? Fantastic scooters.
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