Okay I actually find it surprisingly difficult to make myself update this blog when things are actually happening health-wise. Which is, I guess, mildly ironic/irrational/wrong since the whole point of this is "hey look I'm immunointeresting and here's how it affects me and here's how it does not affect me because I am functioning in the following ways."
But anyway.
For the past eleven years I have had low blood pressure. Insanely predictable, constant, low blood pressure. I think we decided that "low" is my "normal"...any time by blood pressure comes up average they ask if I am stressed or in pain. Right now, though, my blood pressure is inexplicably high, coinciding with a sudden dip in kidney function, as I found out on Monday.
Dealing with this in the following ways:
-getting on blood pressure medication, less because we think my heart is going to explode and more because it should lessen the pressure in my kidneys and maybe make them function more
-trying to...what's the phrase? Calm the fuck down. Right.
-crying occasionally.
-figuring out how to ask my parents to help me pay for aforementioned new med without worrying them. Made more difficult by the fact that I am perhaps overly worried.
-continuing to do this semester. Taking a break right now to sleep and do laundry since I don't have anything major due tomorrow, then moving on.
Urgh is, I think, the word that best describes this moment.
Wednesday, November 3, 2010
Sunday, October 17, 2010
So I do this sport
A "rugged adventure recreational sport activity." I did not make that up; that is the phrasing the waivers for my college's dressage team chose. Yes, yes, I do dressage, which, for those potential readers who are not my close coerced friends, is a form of horseback riding.
I started riding when I was about ten because my mom read something about a woman with terrible arthritis who, after riding for a few years, had notable improvement in her finger joints. Riding is (theoretically) a low impact sport, which is basically why I can do it.
Low impact ^^^
^^^High impact
(wow I started writing this post like 9 days ago, what the fuck was I going to say about horses? Horses. Horses?)
Going off of my confusion, the reason I started writing this was a) oh hey I've never talked about the fact that I ride the quadrupeds and b) I had just gotten back from a horse show that had tried to screw me over for midterms via Fatigue.
Actually, on a sad note, I am "sitting in that middle spot" as my coach says, in that I place 7th practically every show. She wondered if it was because of nerves or because I am just wiped out by the time I ride (coaches, of course, have always known that I am immunointeresting). Then she suggested that the team start leaving me in the hotel till lunch. Which, on the one hand, sleep! on the other hand, sad-face.
I told my doctor about the fairly epic fatigue today. (Oh, this is the part where I ingeniously pretend like this whole post was going to be about my doctor's appointment today instead of about a horse show 9 days ago. Which...yeah.) She was pretty unimpressed with all my symptoms, from my lingering cough (seriously, my lungs are just spazzing at this point) to my swollen lymph nodes to my off-track knees (her words, not mine.)
My lymph nodes, you may remember, have been swollen for six months now. Just two of them, one on the left side of my neck farther back than you would expect, one just next to my trachea on the right side (you needed those details). There used to be more of them, so it's good that it's down to two, and they haven't grown (if anything, they've shrunk) so that is also good but they were still worrying me. My doctor said, and I quote, "What do we worry about with lymph nodes? Lymphoma! But if they're not getting bigger and they're isolated in your neck, it's very unlikely. Have you ever had unprotected sex? Then you probably do not have HIV. You know what? I'm not going to give you another disease."
Yes, friends. "I'm not going to give you another disease."
Then she got really excited when she remembered I had mono six months ago, even though student health was still not completely sure that I did. I don't actually know what happened, but it was finals and I was having boy problems and it was hot and my head hurt and I stopped listening to them. Stupid student health.
So it appears I'm doing well-ish. Doctor also unimpressed with birth control side effects so we guess those are not a big deal. Doctor appeared to be on some sort of drug because she usually is not as pleased with my existence as she was today. Actually, she doesn't like me that much. I took myself off of Plaquenil. (psst, little known fact: doctors don't like it when you take yourself off their drugs.) In my defense, people could tell on days when I hadn't taken my meds: "Did you take your meds today?" "No, why?" "You seem happy." That's how bad that drug was for me.
Okay, that is all for today. I apologize to all, you know, seven of you for not updating ever, I am just very tired/busy/tired/stressed/busy/tired lately. I'm on fall break right now but catching up on sleep takes a lot of work. Plus my friend introduced me to and got me hooked on Dexter and that is seriously cutting into my sleep time because GOODNESS CREEPY.
I started riding when I was about ten because my mom read something about a woman with terrible arthritis who, after riding for a few years, had notable improvement in her finger joints. Riding is (theoretically) a low impact sport, which is basically why I can do it.
Low impact ^^^
^^^High impact
(wow I started writing this post like 9 days ago, what the fuck was I going to say about horses? Horses. Horses?)
Going off of my confusion, the reason I started writing this was a) oh hey I've never talked about the fact that I ride the quadrupeds and b) I had just gotten back from a horse show that had tried to screw me over for midterms via Fatigue.
Actually, on a sad note, I am "sitting in that middle spot" as my coach says, in that I place 7th practically every show. She wondered if it was because of nerves or because I am just wiped out by the time I ride (coaches, of course, have always known that I am immunointeresting). Then she suggested that the team start leaving me in the hotel till lunch. Which, on the one hand, sleep! on the other hand, sad-face.
I told my doctor about the fairly epic fatigue today. (Oh, this is the part where I ingeniously pretend like this whole post was going to be about my doctor's appointment today instead of about a horse show 9 days ago. Which...yeah.) She was pretty unimpressed with all my symptoms, from my lingering cough (seriously, my lungs are just spazzing at this point) to my swollen lymph nodes to my off-track knees (her words, not mine.)
My lymph nodes, you may remember, have been swollen for six months now. Just two of them, one on the left side of my neck farther back than you would expect, one just next to my trachea on the right side (you needed those details). There used to be more of them, so it's good that it's down to two, and they haven't grown (if anything, they've shrunk) so that is also good but they were still worrying me. My doctor said, and I quote, "What do we worry about with lymph nodes? Lymphoma! But if they're not getting bigger and they're isolated in your neck, it's very unlikely. Have you ever had unprotected sex? Then you probably do not have HIV. You know what? I'm not going to give you another disease."
Yes, friends. "I'm not going to give you another disease."
Then she got really excited when she remembered I had mono six months ago, even though student health was still not completely sure that I did. I don't actually know what happened, but it was finals and I was having boy problems and it was hot and my head hurt and I stopped listening to them. Stupid student health.
So it appears I'm doing well-ish. Doctor also unimpressed with birth control side effects so we guess those are not a big deal. Doctor appeared to be on some sort of drug because she usually is not as pleased with my existence as she was today. Actually, she doesn't like me that much. I took myself off of Plaquenil. (psst, little known fact: doctors don't like it when you take yourself off their drugs.) In my defense, people could tell on days when I hadn't taken my meds: "Did you take your meds today?" "No, why?" "You seem happy." That's how bad that drug was for me.
Okay, that is all for today. I apologize to all, you know, seven of you for not updating ever, I am just very tired/busy/tired/stressed/busy/tired lately. I'm on fall break right now but catching up on sleep takes a lot of work. Plus my friend introduced me to and got me hooked on Dexter and that is seriously cutting into my sleep time because GOODNESS CREEPY.
Thursday, October 14, 2010
Children with Disabilities, in your writing
It is no longer cool, folks, to describe a seemingly normal child and then do a sudden "zoom out" and see that he's actually in a wheelchair. That does not make you sound like you accept/are spreading awareness...it really just sounds like you're going for a cheap twist.
(The most recent submission I got of this sort was terrible in other ways too. Fascinating word choices. For instance, this child did now "say," he "uttered." But it did make me think about why, exactly, that kind of plot line fundamentally bugs me.)
What is "in," any dear aspiring child-lit authors, is putting the handicap out there straight away (the manifestation of it, at least, e.g., the wheelchair)and then telling a story that ranges beyond that part of your characters life. What the twist at the end does is make you think you are reading about a child's life only to have it reduced in a second to OH HEY AND HE IS IN A WHEELCHAIR.
Also, be careful when you're folding paper. No first reader likes to have to untangle her submissions before reading them. And don't say "I look forward to hearing your favorable response" in your cover letter. That makes me really not want to give you a favorable response. Soon I will talk about cover letters. Since we have some problems with those.
Alright, that is all for tonight, sorry for my (now usual) lack of vibrancy. I have just enough energy to (barely) get my schoolwork and paid-work done and then I'm pretty much done.
(The most recent submission I got of this sort was terrible in other ways too. Fascinating word choices. For instance, this child did now "say," he "uttered." But it did make me think about why, exactly, that kind of plot line fundamentally bugs me.)
What is "in," any dear aspiring child-lit authors, is putting the handicap out there straight away (the manifestation of it, at least, e.g., the wheelchair)and then telling a story that ranges beyond that part of your characters life. What the twist at the end does is make you think you are reading about a child's life only to have it reduced in a second to OH HEY AND HE IS IN A WHEELCHAIR.
Also, be careful when you're folding paper. No first reader likes to have to untangle her submissions before reading them. And don't say "I look forward to hearing your favorable response" in your cover letter. That makes me really not want to give you a favorable response. Soon I will talk about cover letters. Since we have some problems with those.
Alright, that is all for tonight, sorry for my (now usual) lack of vibrancy. I have just enough energy to (barely) get my schoolwork and paid-work done and then I'm pretty much done.
Sunday, October 10, 2010
Insomnia
You know how it goes. You went to bed an hour ago and you are still awake only now you are panicked because you can't sleep so if you were restless before you are restless as fuck now.
I forced myself to go to bed an hour ago because my sinuses were shouting at me. I have a LOT of work I need to be doing but I reasoned with my anxiety by telling it that I will be more productive when I am less sick, but this whole not-being-able-to-sleep thing makes that a LOT harder to accept, because now I see tomorrow as a sleepy-sick-overworked day.
Dammit.
It really doesn't take much to piss my sinuses off. They get infected in an alarming number of my colds. Hopefully this is just a headache (or, you know, an entire face-ache) but I really, really, really need to be either sleeping or working. Sleeping, because I am so fuzzy-brained right now. I should have foreseen this and taken nyquil but now it is too late for that.
This is not as coherent as I'd like it to be. I am mostly just jabbering in an attempt to wear myself out so that when I try and sleep again I will succeed.
I forced myself to go to bed an hour ago because my sinuses were shouting at me. I have a LOT of work I need to be doing but I reasoned with my anxiety by telling it that I will be more productive when I am less sick, but this whole not-being-able-to-sleep thing makes that a LOT harder to accept, because now I see tomorrow as a sleepy-sick-overworked day.
Dammit.
It really doesn't take much to piss my sinuses off. They get infected in an alarming number of my colds. Hopefully this is just a headache (or, you know, an entire face-ache) but I really, really, really need to be either sleeping or working. Sleeping, because I am so fuzzy-brained right now. I should have foreseen this and taken nyquil but now it is too late for that.
This is not as coherent as I'd like it to be. I am mostly just jabbering in an attempt to wear myself out so that when I try and sleep again I will succeed.
Monday, October 4, 2010
A few more tips you didn't need
Please keep in mind, dear readers, that I am not an expert in the field of publishing. I am not even a professional in that field. But, chances are, if you are submitting to a kid's literary magazine your first reader will be kind of me-like in experience. I finished my first box of submissions fairly recently, so here are 3 tips for healthy submitting.
1. We don't care about Pooky. We do not care that Pooky is a real cat who sits by a real window and we wish you would not tell us these things in your cover letter because it kind of creeps us out. Furthermore, Pooky may see really fun, educational things out the window, but "Only Pooky knows what Pooky sees in the dark, dark night" is a BAD WAY to end a poem. A bad way.
To be on the safe side, do not write us about your cat. Cats are kind of inherently creepy.
2. No, we have never had a "grumpy bumpy day" but we are sorry that your main character is having one. You probably don't need to start off your cover letter addressing someone you know to be vaguely adult-like with "have you ever had a grumpy bumpy day?" - we really don't react well to that line of questioning. It makes us, if you will, grumpy-bumpy.
3. If you need to use a letter template on microsoft word, be sure to delete where it says "(your signature here)" BEFORE printing. It's just that I laughed at you a lot.
Okay that's all for now folks, I'm gonna do that whole sleep thing (slept through class this morning. I never do that. Must be really, really tired).
1. We don't care about Pooky. We do not care that Pooky is a real cat who sits by a real window and we wish you would not tell us these things in your cover letter because it kind of creeps us out. Furthermore, Pooky may see really fun, educational things out the window, but "Only Pooky knows what Pooky sees in the dark, dark night" is a BAD WAY to end a poem. A bad way.
To be on the safe side, do not write us about your cat. Cats are kind of inherently creepy.
2. No, we have never had a "grumpy bumpy day" but we are sorry that your main character is having one. You probably don't need to start off your cover letter addressing someone you know to be vaguely adult-like with "have you ever had a grumpy bumpy day?" - we really don't react well to that line of questioning. It makes us, if you will, grumpy-bumpy.
3. If you need to use a letter template on microsoft word, be sure to delete where it says "(your signature here)" BEFORE printing. It's just that I laughed at you a lot.
Okay that's all for now folks, I'm gonna do that whole sleep thing (slept through class this morning. I never do that. Must be really, really tired).
Monday, September 27, 2010
...and then you ran through traffic and came out unscathed. 'Cause you're auto-immune!
Hur, hur, hur. My friend made that joke the other day and I decided it was the best thing ever. Now I tell it to everyone.
I recognize that I am utter fail at updating this blog now that school's gotten underway. It's not actually that I don't have thirty minutes to type things up, it is more that I have trouble finding brain power with which I can make coherent sentences. Regardless, the people who follow this blog probably have, you know, lives, so I'm not apologizing too heartily.
Anyway, things! I did the Cleveland lupus walk on Saturday which was a psychologically confusing experience. While I'm fairly open now about the fact that I HAVE lupus (I mean, I tell people, when appropriate circumstances arise, with the exception of employers and professors, who I only tell when absolutely necessary) but I am not over the roof about open displays of lupieness which has not ALL that much to do with the disease itself...I generally don't like branding myself too heartily or allying myself publicly with things.
But I got this hoodie. Oh my goodness, this hoodie. It is mortifyingly green (matches my sheets perfectly! I've already lost it three times on my bed.)and says "walk for lupus now" on one side. I got it for raising more than $100 in donations but it is just too comfortable not to wear, even though I feel really REALLY weird about wearing it.
I also got a hat. Actually, it was kind of funny because when I first got there i thought "this is so weird, you cannot tell AT ALL who here is a patient and who is supporting/family/friend/etc. There is just practically no way to tell." But then I went to get my hoodie and they looked at their list and back up at me and said "Oh, you're a patient? You get a hat. Go get your hat." At first I thought it was a pity hat but no! It was a "THESE ARE THE LUPIES" hat.
Actually it was probably neither. Or both. I just amused myself with this concept for a while.
Regardless, in a painful irony, walking 5k busted up my left leg so I am Le Hobbler now. It's so odd, my foot where i had surgery is going batshit but I can't walk on the side of my foot to avoid my toe because then my knee cracks, and my hip is just...don't even talk to me about my hip. Stupid leg. Luckily no matter how slowly I cross the street I'll never get hit! Because I'm auto......
Okay. I'm done.
Next time: Submissions from hell, including Pooky the cat.
I recognize that I am utter fail at updating this blog now that school's gotten underway. It's not actually that I don't have thirty minutes to type things up, it is more that I have trouble finding brain power with which I can make coherent sentences. Regardless, the people who follow this blog probably have, you know, lives, so I'm not apologizing too heartily.
Anyway, things! I did the Cleveland lupus walk on Saturday which was a psychologically confusing experience. While I'm fairly open now about the fact that I HAVE lupus (I mean, I tell people, when appropriate circumstances arise, with the exception of employers and professors, who I only tell when absolutely necessary) but I am not over the roof about open displays of lupieness which has not ALL that much to do with the disease itself...I generally don't like branding myself too heartily or allying myself publicly with things.
But I got this hoodie. Oh my goodness, this hoodie. It is mortifyingly green (matches my sheets perfectly! I've already lost it three times on my bed.)and says "walk for lupus now" on one side. I got it for raising more than $100 in donations but it is just too comfortable not to wear, even though I feel really REALLY weird about wearing it.
I also got a hat. Actually, it was kind of funny because when I first got there i thought "this is so weird, you cannot tell AT ALL who here is a patient and who is supporting/family/friend/etc. There is just practically no way to tell." But then I went to get my hoodie and they looked at their list and back up at me and said "Oh, you're a patient? You get a hat. Go get your hat." At first I thought it was a pity hat but no! It was a "THESE ARE THE LUPIES" hat.
Actually it was probably neither. Or both. I just amused myself with this concept for a while.
Regardless, in a painful irony, walking 5k busted up my left leg so I am Le Hobbler now. It's so odd, my foot where i had surgery is going batshit but I can't walk on the side of my foot to avoid my toe because then my knee cracks, and my hip is just...don't even talk to me about my hip. Stupid leg. Luckily no matter how slowly I cross the street I'll never get hit! Because I'm auto......
Okay. I'm done.
Next time: Submissions from hell, including Pooky the cat.
Friday, September 10, 2010
Why being ill is incompatible with my life
Dear friends, I have somehow managed to acquire 5 jobs. Prior to Thursday, I only had two. Three. But, in a piece of exciting news, remember how this whole blog started out with fun stories about crazy submissions and nutty intern-moments? Well, the place I interned for has offered me a job as a first reader! (see here if you forgot how the process works) It pays more dollars per hour than my sandwich/smoothie/coffee making job on campus but it is probably fewer hours a week, so I am keeping my menial labor. Especially since, in menial-labor-land, i was just promoted to student manager. Also, I like making smoothies, okay?? It's not that hard to keep me entertained.
So that's three jobs (sandwich/smoothie, coffee shop, first reader), and I am a writing associate for an English class this semester (one I took and was terrible at, so this should be interesting), and then my internship emailed me again and was like oh yeah and do you also want to write up reader reports for one of our magazines?
And I was like yes. Yes I do.
This is actually so exciting, folks, even though I do not think I want to be in publishing forever, I have some sort of nifty "in" with this small part of the publishing world because they liiiiiiked me! So be liked at your internships, I guess is what I'm saying, and you, too, can overwhelm yourself with too many jobs.
So basically, I know that I'm going to get swamped and overwhelmed, but the best thing for me is to keep as busy as I want to keep and work on organizing my time ridiculously well. I don't accept my own disease as a legitimate excuse not to do the things I am doing. Mostly this is because I can't tell when I'm actually too tired/sick/sore or when I am just unmotivated. And when I am unmotivated, is it legit BECAUSE I'm tired/sick/sore? I dunno. You would think I'd know since I've had this crazy disease for eleven years but no, I don't. Oh well!
Hokay that's all for now. I am not good at updating this and existing at the same time, but shall continue to do my best!
So that's three jobs (sandwich/smoothie, coffee shop, first reader), and I am a writing associate for an English class this semester (one I took and was terrible at, so this should be interesting), and then my internship emailed me again and was like oh yeah and do you also want to write up reader reports for one of our magazines?
And I was like yes. Yes I do.
This is actually so exciting, folks, even though I do not think I want to be in publishing forever, I have some sort of nifty "in" with this small part of the publishing world because they liiiiiiked me! So be liked at your internships, I guess is what I'm saying, and you, too, can overwhelm yourself with too many jobs.
So basically, I know that I'm going to get swamped and overwhelmed, but the best thing for me is to keep as busy as I want to keep and work on organizing my time ridiculously well. I don't accept my own disease as a legitimate excuse not to do the things I am doing. Mostly this is because I can't tell when I'm actually too tired/sick/sore or when I am just unmotivated. And when I am unmotivated, is it legit BECAUSE I'm tired/sick/sore? I dunno. You would think I'd know since I've had this crazy disease for eleven years but no, I don't. Oh well!
Hokay that's all for now. I am not good at updating this and existing at the same time, but shall continue to do my best!
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