In December, I posted a five month update about all the progress I'd made with my chronic illnesses since going to Mayo Clinic at the end of July/beginning of August 2017. It's now been a full year since Mayo Clinic, and it seems appropriate to post another chronic illness update. So here's what's changed since then.
Since December, I've continued to make progress in many ways. The most significant is with my interstitial cystitis. Since I developed it in 2016, I've been at a constant pelvic pain level of at least a 6 (on the Kira Pain Scale, which I know for a fact is skewed upward from a regular person's pain scale). But in April, I started taking gabapentin. At first it didn't do anything, but once I hit the right dose, my IC pain level dropped dramatically. It's now down to about a 3 or 4, the same general level as the rest of my body. While the gabapentin didn't have any effect on my fibromyalgia pain, despite being approved for that, its effect on my IC was something like a miracle. Gabapentin, basically, is to my IC what antidepressants were to my fibromyalgia.
Since then, I've been able to reduce my bladder instillations from once every other week to once a month. I've been able to start wearing skirts again, instead of just dresses all the time, and yesterday I was able to give loose sweatpants a successful test run. I've also been able to add a few more foods to my diet, and I'm much less afraid of setting off a horrific flare if I eat the wrong thing.
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.
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:
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.
*A one year update (August 2018) can also be found here.*
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
*A five month update can be found here, and a one year update (August 2018) can be found here.*
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.
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.
Hey, guys! So this is sort of a follow-up on my last fibromyalgia post.
*Contains mention of suicidal thoughts*
As you know, I’ve been struggling a lot the past year with my fibromyalgia, which has been worsening basically since I first developed it, in 2009. It took a few big leaps in the last couple years, and since I graduated from college, I’ve been much, much sicker.
Hey, friends. This is just to let you know that the cytoscopy/hydrodistention on Friday was successful. I have been officially diagnosed with interstitial cystitis, and the hydrodistention has already caused a marked improvement of my pelvic pain. Unfortunately, my fibromyalgia is furious about all of this and I'm in the midst of a severe flare, so a lot of pain still. My mind does feel clearer than it has the past two weeks, though.
I've turned a corner, and I think, with this and with a functional medicine doctor helping me make a new fibromyalgia management plan, that I might even be able to get back to a relatively normal life by 2017. My goal is to be able to do the things I've always loved doing--to be able to finish editig COCA, to be able to keep up on this blog, to continue with grad school online, to start new writing projects, be an even better member of the Ch1Con team, and eventually get a job.
For right now, rest and recovery are taking center stage. My body very clearly needs it, and if I don't oblige, it'll bully me into it anyway. As such, once again, I won't be participating in NaNoWriMo. Next year, though, with any luck! Thanks for all your good thoughts, prayers, and support. I see real hope now for the first time in a while, which is fantastic.
See you again Tuesday, hopefully.
(P.S. Check out the newest feature on the Ch1Con website--a young author bookshelf! I'm proud of myself for being able to contribute to this, despite my current state, and I think it'll be a really great resource for people.)
I'm sorry for that last, silent week. I've been extremely sick with severe pelvic pain, in and out of the ER and Urgent Care and to doctors. We're fairly sure now that I have interstitial cystitis, a bladder inflammation disorder that shows up a lot with fibromyalgia, and that I went into a bad flare after a couple years without treatment and a less-than-favorable diet. To confirm, I'm having a cytoscopy on Friday. Basically my health is shot right now, and I feel awful, but I'm just trying to pull through. There is hope in sight.
It's time for "Waiting On" Wednesday! This is a feature begun by Breaking the Spine, in which bloggers share an upcoming book about which they are very excited. So here's the next yet-to-be-published YA/MG novel from the top of my TBR list!
*For a follow-up on this post, click here.*
For well over a year, I have been struggling.
Struggling isn't new for me. I developed OCD at the age of eight, which led to BDD at the age of eleven, suicidal ideation at the age of thirteen, and trichotillomania/dermatillomania at the age of seventeen. I wasn't diagnosed, and therefore didn't get treatment, until the age of nineteen. I still have to contend with my OCD, most especially the tricho/derma aspect, daily. My family is a hotbed of mental illness and confusion, and of course, I dealt with the usual amount of bullying and academic pressure and friend issues growing up.
On top of all that, when I was fifteen, on Halloween 2009, I caught H1N1, followed by bronchitis and strep throat. My first symptom, hip pain, never left. In fact, it spread until, by the beginning of my junior year of high school, I'd developed full-blown fibromyalgia. I was, luckily, diagnosed only two and half months later.
It took months for me to get through the inevitable grieving process that comes with the forever loss of a healthy body and the privilege that comes with it. I researched and read and learned all the scary statistics; I figured out my priorities and readjusted my expectations. I finally came to a place of acceptance, and with outside support, an adjusted lifestyle, and antidepressants, I got my fibromyalgia into a manageable place. I've discussed my condition and related experiences here before, so you know all that.
That was four years ago. I thought I was done grieving. I thought I only needed to reach "acceptance" once. I was wrong.
Since I can't be bothered right now to write much of an actual post (I'm tired and I have homework to do), here's some thoughts on it being my last first week of school. Kind of. As I said in my last post, I'll be starting grad school in August unless something goes terribly wrong, but that's an online program, so in the way it counts, this is my last first week.
It's strange to be a graduating senior. The last time I graduated, as a high school senior, my world was vastly different, not in the least because I hadn't yet been diagnosed with or treated for my OCD. I didn't yet know the language of social justice. I'd never lived away from home. Two of my family's cats, one of which is my dear emotional support animal Spartacus, hadn't yet been born. I'd had crushes on guys since before I could remember, whereas now I've gone through a couple stretches where I've had no interesting prospects, including the current moment (although my shipping skills continue to be on point). I'd never seen a superhero movie (speaking of shipping).
Ableism, like many other forms of prejudice and marginalization, is woven into our society. As such, each one of us has imbibed the rhetoric of ableism, each one of us holds ableist beliefs, and we're all prone to saying things that are wrong, even though most of us don't want to be hurtful or offensive. This holds true for disabled and mentally ill people as well as people with no experience in the area--that's how insidious and deep the effect is. When you're so surrounded by these prejudices, you're bound to be affected by it, no matter your station in life.
That's why it's so important that people listen to those who are underprivileged and marginalized, that they respect their stories and feelings, and that they acknowledge that each one of us knows only a limited amount about the human experience. One part of that human experience is how prejudice and marginalization feels and looks for different groups. That's why the language of social justice matters. That's also why it's so important to call out instances of prejudice, such as ableism. Society will not change, people's intrinsic attitudes will not change, unless pushed to do so.
Naturally, when ableist beliefs are widespread in a society, they also affect subcultures in that society. Religion is one example. Whatever the true beliefs and nature of any religion, the people practicing it will be affected by the prejudices of the society they are part of. As such, religion has its own set of ableist rhetoric that must be combated.
Well, it's been an interesting week, and I suppose it's time to update you on it. I'm gonna keep it short because I'm in need of rest and am also currently a bit addicted to Supernatural, which I'm rewatching with Becca. Speaking of Supernatural, why not tell some sad news in a more happy fashion? I'll do this post via Supernatural gifs.
For most of the semester, I've been having a rough time with the fibro, I think because I overbooked myself this semester.
Time for a video! Today we're doing the fibromyalgic beauty routine, in which I talk about recent changes to my beauty routine while also sharing "Fibromyalgic Beauty Bits," about the things that are difficult thanks to my condition. Thanks for watching, and I'll see you for Top Ten Tuesday next week. (Also, happy birthday, Mom!)
*Spoilers for the Avengers movies ahoy*
Dear Marvel Studios,
I'm a pretty new fan, brought in by your first Avengers movie in 2012. I'm not sure why I didn't get into superhero stuff before that, given how much I like speculative fiction, but perhaps I thought it was a "boy" thing. You can't really blame me, given the continual issues with comics being a male-dominated field. Just look at the problem you still have with fair representation of Black Widow in merchandise!
But you did pull me in with The Avengers, and even though I had no idea what was going on (which happens when you've missed all the prequel movies and are watching the movie past midnight on a whim), I was interested enough to go back and watch a whole ton of superhero movies during the summer, which I ended up blogging about here. Like many, I believe that you currently are the forerunner on superhero movies, and I'm willing to take chances on your movies (like Ant-Man) that I won't on others. You also got me to change my favorite superhero from Superman to Captain America, which I'm sure you're glad to hear.
I'm also a big social justice person, and, as an author, I believe diverse representation in the media is vitally important. Again, this is a problem you're still struggling with, although kudos on slowly diversifying the Avengers team and having solo movies with female/black superheroes coming out in the future. So I've been invested in seeing how the Avengers team grows and how the stories therein play out. This past movie, Avengers: Age of Ultron, gave me a lot of hope. (Though I feel I must ask, what's up with that random Black Widow/Hulk romance? I mean, it sort of works, but it came out of left field for me.)
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