Tuesday two weeks ago, me, my mom, and my brother all set off for Rochester, Minnesota, where the main Mayo Clinic campus is. This involved two airplane rides and almost two hours in a car, so it was fun times. Additionally, the airline left our luggage behind, so we had to make do with our carry-ons the first day.
It has now been five years since I started this blog. Can you believe it?
Here are the best posts of the past year for you to enjoy! You can check out the best posts from the other four years of this blog in the Posts of the Year Roundups linked on my Recommended Posts page. Thanks for being here, and let me know if you have any thoughts or critique about my blog. I will see you again on Tuesday!
Today, I think it's time for another Taking Stock of My Life post, in which I share the current state of my existence through a series of -ing verbs. Check it out!
Eating: plain cheese quesadillas on organic tortillas
Drinking: water, but as usual, not nearly enough of it
Wearing: A cute sundress in black with a peachy-brown flower print
Smelling: the wonderfully stale air of my room
Reading: Wise Blood by Flannery O'Connor
Writing: just blog posts and diary entries right now
Editing: old blog posts, mostly
Listening: to Bishop Briggs and the Piano Guys
One part of being chronically ill that can be really difficult is eating.
First off, let's be clear: one of the most common microaggressions disabled people face is other people trying to tell them what to do. Everyone has a magic cure; everyone thinks they know how to fix you. And yes, most of it's well-meaning, but often the implication is that you don't know enough about your own illness, that you don't know your own body, and that you're not trying hard enough to get better. Furthermore, being told about someone's aunt's cousin's friend who got 100% better after trying this "magic water" can be very hurtful for chronically ill people--because there is no such thing as a cure. Many chronically ill people, like myself, suffer from disorders that do not go away. Ever. All you can do is manage the symptoms the best you can with the treatments that do help. We have to deal with that fact, and having people come up to us all the time insisting that an impossible hope exists just causes us more pain. It makes it harder to accept the truth. It also makes us feel like the person suggesting a cure doesn't believe us, which is a huge problem that chronically ill people face in society.
Plus, a lot of the time, these cures are scams. Even when they're not, they likely only have a limited impact on a limited group of people, because different bodies respond differently, even to properly tested, doctor-approved medications.
Now, most people who suggest "cures" for chronic illness focus on diet. No matter how long someone has had a chronic illness, how many doctors they've seen, or how well controlled their symptoms are, people will always comment on their diet. I've had people I barely know give me advice about healthy eating upon hearing about my disability, which, again, is insulting. The two things I've heard the most are a) go gluten free and b) eat more vegetables.
But no one ever told me about corn.
I've talked in the past about my experiences with good vs. bad teachers, but today, I want to share the worst and most ridiculous thing to happen to me at school. This is the story of Kevin and his calculator.
Once upon a time, during my first semester at BYU-Idaho, I had a religion teacher whom I did not like. I didn't hate him either; I just found him to be a little too black-and-white in his thinking and a bit self-righteous. But, as usual, I did all my schoolwork and kept under the radar and got good grades.
Every week, on our own time, we took an online, open-book quiz. As a disabled person, I had a number of accommodations granted to me through the Disability Office. One was that I used a Kindle for many of my textbooks, in order to minimize the amount of weight I had to carry. My scriptures were one of these.
Then, on the second to last week of classes, the religion teacher called me into his office.
"You've been getting better grades than anyone on the quizzes," he said, "and you finish them quickly."
I nodded, unsure where was this was going.
"Have you been cheating?" he asked.
I can't say that I was very well-known by my classmates in school. Me and my best friends were somewhat on the fringe, with friends in various "groups," but not really in any groups ourselves. We had our own little side group, and we were happy that way. But my high school was small, so we all knew each other a little. The reputation that I did have was a simple one: I was the "innocent."
Almost every aspiring writer takes a creative writing class at some point in their lives. A lot of us wonder, though, about the value of those classes. I know a lot of young writers especially question whether or not they should go on to get a Creative Writing degree. So today, I thought I'd share my own experiences with creative writing classes.
I took my first creative writing class in seventh grade. Before that, my teachers supported my writing, and I even had some dedicated time to it through the GATE program, but everyone took the same classes. In middle school, we got to choose some of what we did, and I, of course, chose to take creative writing.
That first class did not go well.
A few months ago, I switched antidepressants. Almost immediately, my mind began to clear. It would appear that my severe brain fog was, in part, a side effect of my previous medication. So now, thankfully, I'm awake again. I can keep up with what's happening around me. I can write without feeling as though I have to swim through Jello to find each word. It's the most progress I've seen in years.
Unfortunately, the medication change has had almost no effect on my physical state. I'm still in severe pain, all over, with no relief. I suffer from muscle weakness and loss of balance, and I have truncal titubation tremors whenever I exert myself much more than I am now (and right now, I'm almost on bed rest). I need naps, like, a lot.
It's something. It means that I can finally make some progress with my writing again. But it's not the miracle I'm looking for. It's not enough for me to have a life again.
This past week, my interstitial cystitis also decided to flare up yet again, making it almost impossible for me to get the sleep I so desperately need. Not only can I not wear pants right now, I can't wear underwear either. I spend all day with my heating pad on. Even then, my bladder is like a never-ending siren shrieking inside of me. I decided to try a bladder instillation, where they put medication into your bladder while you're awake (as opposed to a hydrodistention, where they also stretch your bladder as far as they can, a process so painful it must be done under anesthesia). It helped for a few hours, and then my pain became even worse. I'm still waiting for it to settle. I hope that it does.
I'm also now dealing with the Specific Carbohydrate Diet on top of the already very strict IC Diet, for two weeks while I take an antibiotic to help with my IBS. I am ridiculous hungry, and I really hope it's worth it.
And so the fight goes on.
At the end of third grade, my family moved to the town that I now call home.
Although it wasn't a long move, the change was pretty significant. I went from city to small town, from a non-traditional school to regular public school. Being the new kid in school also meant that people saw me as new and interesting. In the year or two before we had moved, I had lost all of my friends and was being bullied because, as one girl informed me, they didn't like how smart I was. So having all my new classmates want me as their friend was surprising and overwhelming.
I sat alone at lunch the first day. A few kids from different tables came over to ask if I wanted to play with them. By then, I was so overwhelmed that I just wanted to be left alone. I didn't know anything about the people here, about who shared my interests and who didn't, and I hated the pressure of their expectations. I could tell that this choice was important and that they all wanted me to make it as soon as possible. But I lacked the information necessary to make such a big decision.
Then, near the end of lunch, a little brunette girl came over. Looking at the ground and speaking in a tiny voice, she asked if I wanted to spend recess with her and her friends.
I liked her right away. She wasn't like the others, who seemed to think I should give them my friendship immediately and without second thought. This girl was quiet and undemanding and clearly didn't think I would say yes.
So I did.
That is the story of how I met my best friend LaPriel.
Hey guys! It seems like a good time to give you another life update, in the form of "-ing" verbs.
Eating: plain popcorn and organic sugar cookies
Drinking: organic apple juice
Wearing: a grey wrap dress
Reading: Black Widow: Red Vengeance by Margaret Stohl
Writing: a personal project
Editing: nothing right now
*Warning: nasty injury described below.*
At my high school, freshman P.E. was required. Having had a slew of bad P.E. experiences, I was happy to have a coach there who was affable and accommodating. He was cool with the fact that I couldn't run for very long, thanks to an undetermined medical issue that we were kinda just calling asthma even though it wasn't. (It turned out to be an early fibromyalgia symptom worsened by exercise-induced ocular migraines.) He let me do as much as I could, just as long as I was trying. His class engendered in me an actual interest in regular exercise.
At the end of last week, my bladder gave up. Again.
I went from my everyday “yes sir, this is quite unpleasant, this is some very bad pain here, sir,” constant-heating-pad-use, never-able-to-wear-pants pain to “I want to scream and throw things, BUT THAT WOULD JUST HURT MORE”, unable-to-sleep-or-eat, not-even-able-to-wear-underwear pain. My bladder was tired of all the stress, all of me trying to push myself to do “just a little more, come on, this shouldn’t be so hard,” and it decided that my very strict diet and Elmiron doses weren’t enough. Neither was the heating pad. Neither was the ibuprofen, or the emergency hydrocodone. Coriander tea, which has by far been the most effective pain reliever, could only do enough to keep me from totally losing it.
Thankfully, my urologist came through for me and prescribed some new emergency pain meds for me to use. I’m having another hydrodistention under anesthesia, which should reset my pain to at least a tolerable level, next week.
Except I’m starting to wonder what “tolerable” really looks like.
As you all know, I’m been suffering from severe fatigue for the past seven months—though it had been building up for at least three years—along with tremors, muscle weakness, and a loss of balance that couldn’t be explained by the fibromyalgia or the interstitial cystitis diagnoses. For the past few months, my energy has been so limited that, in order to get an hour or so’s worth of clear thought a day—just to be able to write a blog post or two!—I have to spend the rest of the day in bed doing little but watching TV. Every action on my part means extreme sacrifice, because I have so little to give in the first place. Think of the Biblical widow’s mite, but, like, way less inspiring.
It's been a little while since my last bookshelf tour, and I've actually gotten a new, bigger bookshelf since then. So here's what's going on in Kira's bookland. (Sorry for the blurry photos; I'm still working on that whole "getting a smartphone" thing. Smartphones do have decentish cameras, right? Uch, I don't even know.)
Hello, and welcome to 2017! In lieu of a Top Ten Tuesday post, today I'm going to take a look at my resolutions from 2016 and share my new ones for this year.
As you know, 2016 was a rough year for me. I did complete resolutions #4, #5, and #6--I graduated from BYU-Idaho with my English degree, I was accepted into SJSU's Library and Information Science program, and I completed two basic courses to start out my Master's degree. However, with my health worsening throughout the first half of the year and then taking a major dive during the second half, I was unable to complete any of my other resolutions.
Extreme fatigue and brain fog have made it difficult to do much but sit in bed and watch TV for the past six months. I haven't been able to do more than a little editing on COCA (resolution #1), I've been too ill to go most places, let alone do the driving (#2), since I was unable to edit COCA, I also did not write a new novel or start sending out to agents (#3), I didn't have a job or any energy to budget the money I had (#8, #7), I had no chance to meet a guy, let alone date one (#9), and even my reading time slowed, though I did hit an adjusted reading goal of 350 books, which I will also aim for this year (#10). Furthermore, I still have no real plan for the future, especially now that I'm too sick to do much anything.
What did happen in 2016: I was diagnosed with interstitial cystitis, I began having significant tremors requiring me to start using a cane, and I still didn't find any real solution to the health issues that are preventing me from reaching my goals. I also lost weight at my doctor's recommendation--20 pounds, though I'd like to try for 10 more. I'm not making that one an official 2017 resolution because I'm not sure how feasible it is, but I will at least continue trying.
I'll see you again next week!
Image via opendoormission.blogspot.com.
I'm an unpublished novelist, primarily of YA fantasy, on medical leave from my Master's program. I love music, psychology, cats, social justice, and love! I'm a huge fangirl. Basically, stories are my life.
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