*Long post ahoy!*
It's been a while since I shared a "day in the life" post. This is mostly because I've been so sick for the past few years that my daily life is not really that interesting. But I do want to share some of the reality of chronically ill living with you, and my life has improved enough to keep it from being too super boring. So I figured it was time to share, not a day in my life, but a week in my life, starting last Saturday.
*Long post ahoy!*
My apologies for missing last week! I had to take a sick day. :P
Now it's time for another round of speedlinking, where I share some cool stuff from across the Internet for you to enjoy!
First off, I added the two Avengers: Infinity War trailers to my Speedlinking playlist on YouTube (#23 and 24), because THIS IS A VERY IMPORTANT EVENT THAT I'M NOT SURE MY FEELINGS WILL SURVIVE. (Can you believe it now has an April 27 release worldwide?) *Language warning on that link*
Next, a few links that may be useful to you writers out there. A lot of people online have been talking about the Notebook.ai, a worldbuilding program online that has both a free and a paid version. It looks really awesome, and I'm sure a lot of you would enjoy using it. Me, I've found that I do better freeform, using Word--even my one go at the ever-popular Scrivener didn't work out. Nevertheless, this looks like something a lot of people will find very useful.
There's also a random last name generator, for those less-important characters who you just need to name, darnit. It's got a great variety of names from every culture, at least from what I've seen so far, and it's a little less awkward than going through your Twitter feed. :)
Then there's the Atlas Obscura, a website where you can look up basically any location to find its most interesting attractions. I think this could be useful for real-world worldbuilding, as one of many pieces of research you'll have to do when including a real city in your stories.
Well, the high of WriteOnCon has passed, and I have realized that I need to make some massive edits on CUCUY, removing something that was originally a big part of the manuscript. It's gonna be a lot of work. I don't mind that, really (mostly), but I do worry I'll be passing my "deadline" with my betas/CPs again. I guess we'll see!
Today, in honor of Valentine's Day, I wanted to talk about OCD and romance.
When you're someone with chronic illnesses, going to the doctor is a uniquely frustrating experience. So just as I once updated you on my condition via Supernatural gifs, today I'm going to share the experience of going to the doctor via some pretty grainy Star Trek gifs. Enjoy, add your own in the comments, and I'll be back tomorrow!
Your doctor, when you list all the conditions you have:
Today I'd like to share a roundup of some of my favorite social justice-themed posts from Tumblr, Twitter, and more. The majority of what I know about social justice I learned from others on the Internet--and oftentimes, they put it a lot better than I ever could! So check out these posts that discuss feminism, disabled rights, and more. Learn from them, my padawans, and I'll be back again next week. (For more like this, check out my Social Justice board on Pinterest or my social justice tag on Tumblr--or my Twitter in general!)
*This post includes discussion of various prejudices/oppressions, rape, and rape culture.*
As you know from my On This Day in My History posts, I keep a diary. But to just say that I keep a diary is a bit of an understatement. I've been writing diaries since kindergarten, in fact, although it didn't become a regular habit until fifth or sixth grade. As of today, I've been through over 75 notebooks, and my transcribed journals (up to about halfway through 2013), are approximately 5,000 Times New Roman 1.5 spaced pages in total. 5,000 pages! And that's after spending October and November reformatting in order to cut down on length.
We're still waiting on the cover for my next "Waiting On" Wednesday, so today, I'm updating you on what's been going on with my health since I went to Mayo Clinic, back in late July/early August.
When I got back from Mayo Clinic, I was already noticing some improvement. I'd realized, during their fibromyalgia/CFS seminar, that I had been exercising too much for my body to handle in its current condition. While at Mayo Clinic, I didn't exercise at all, and by the time I got home, my tremors and loss of balance had pretty much vanished. This was, of course, a big relief, and it made walking a lot easier. Evidently, my body's response to the overexertion was to respond with those neurological symptoms.
Pampering yourself and looking good are two great mood-lifters. However, when you have chronic pain, even basic hygiene can become painful and difficult. As my conditions have worsened, I've found myself more and more limited in my options of what I can wear. But I do want to look good and to own my own style! So I've come up with some tips on how to make the most of the options I have.
Beauty & Hygiene
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.
Before I really break into this post, I want to make one thing very clear: one of the most common microaggressions disabled people face is other people giving them unsolicited medical advice. DO NOT DO THIS, it is rude. 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. 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.
All of that is on top of the fact that, a lot of the time, these cures are scams that might even be extremely damaging to our health.
"But Kira!" you say. "It's not a scam! My aunt's cousin's friend really did get cured by this magic water!"
DOESN'T MATTER. Unless we specifically ask for your thoughts on treating one of our conditions, DO NOT OFFER US MEDICAL ADVICE. We know plenty well what's been tried and proven to the point of actually being officially recommended, either by the medical field or by trusted condition-specific websites. The rest of it, we (at least the majority of us) don't want to know about. Why? See the above reasons. If your aunt's cousin's friend really was cured by whatever this magic cure is, then it's probable they didn't actually have the condition in the first place. It was probably something different that resolved on its own, by lucky accident, or even just through the placebo effect. Even if they did have the condition, different bodies react differently. It's possible they had a much more minor version of the condition. And, if this "cure" hasn't been shown to work on enough people to be included in the trusted literature, it's also possible your aunt's cousin's friend is one of a very few whose body reacted in that way.
So. To sum up: do most disabled/chronically ill people want to know about your magic cures and other medical theories? No, we don't. Most of us don't think it's worth the risk to mess with stuff that isn't commonly trusted. If we want to take a risk, we will ask someone we trust ourselves. DO. NOT. OFFER. UNSOLICITED MEDICAL ADVICE. ESPECIALLY. TO. DISABLED/CHRONICALLY ILL PEOPLE.
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.
Welcome back to Top Ten Tuesday, a book blog tag hosted by The Broke and the Bookish! Today, I'm going to share my Top Ten More YA Novels About Mental Illness, adding on to the thirteen I recommended in this earlier post. Check them out!
1) Challenger Deep by Neal Shusterman. This is a truly fantastic YA contemporary about a boy in treatment for schizophrenia, written in a riotous, confusing manner that puts you right in the head of the patient. It's a well-deserved National Book Award winner.
2) Underwater by Marisa Reichardt. This beautifully paced YA contemporary explores the situation of a girl suffering from agoraphobia after a trauma. Like Challenger Deep, it does a great job of getting you in the mindset of the mentally ill individual so that you can better understand.
3) Still Life with Tornado by A.S. King. This odd YA magical realism tells the story of a girl suffering from depression and a bad home life and how she starts seeing different versions of herself from throughout time as she tries to come to terms with her situation.
I've shared myleast favorite tropes before, but every so often, I come across a trope that I find particularly upsetting. Today, as part of my Kill the Trope series, I'm going to examine the "crazy telepathic woman" trope and explain to you how it combines misogyny and ableism so horrifically that it needs to be abandoned. *Comics spoilers ahoy*
Once upon a time, there was a woman with telepathic powers. She could read minds, control them, maybe even undo them. Despite the enormous mental and emotional pressure that having such a power would exert, she managed to eke out a life as a hero. She used her incredible gift to protect lives, and even though it was a pretty scary power that was sometimes hard on her, she became a real force for good in the world. Then, one day, something terrible happens--a death, usually, or some kind of accident that breaks her powers loose.
She goes insane. Not just your regular old "wow I have a mental illness" insane, but "I am going to literally murder everyone" insane. She loses all sense of morality, all sense of boundaries, all sense of self, and wreaks terrible havoc across the world until someone finally stops her, usually by killing her. (Because she's a superhero, she will probably come back, but even once she's her normal self again, everyone will be wary of her and will constantly bring up that one time she went crazy, if not outright reject her.)
A few months ago, I switched antidepressants. Almost immediately, my mind began to clear. It would appear that my profound brain fog was partly 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 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.
I’ve 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 can’t really 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.
I'm an unpublished novelist, primarily of YA fantasy, working towards my MLIS degree. I love psychology, cats, social justice, and love! I'm also a huge fangirl. Basically, stories are my life.
Most Popular Posts
Why I Hate James Patter...
Hitler and Mother Teres...
Guest Post: 5 Fandom-I...
Successful People Who...
Choosing a Genre to Wr...