End-User Experience

SelfCareRevelation
<Image Text>: “Most People have ‘Ah ha’ moments. I have “Oh for fuck’s sake, fuck this shit” moments.” Note: this is a pretty apt description of the process of me finally accepting that I’m better off actually taking care of myself rather than letting the opinions of others prevent me from benefitting from readily available accessibility aids that would save me critical spoons.

Movie theaters have become events in and of themselves. One that opened near us recently has a full restaurant inside of it where patrons can eat at traditional tables before the movie – or order their carnitas nachos to be served at tables inside the theater while they recline in their heated leather seats. The theater also boasts gourmet versions of standard guilty pleasure treats made with all natural, non-high-fructose-corn-syrup ingredients like white raspberry slushies and cheddar and caramel popcorn.

And – although they offer treats with more FODMAP-friendly ingredients that make me less likely to need them in a hurry (if you know what I mean) – they additionally offer bathrooms with marble stylings and individual sinks each equipped with their own personal accoutrements and air dryers so I’m not missing even more of the movie than necessary getting stuck waiting in a line when I’m hoping to rush back to my seat after an inevitable potty break during the three-hour-long Avengers: Endgame.

All of this luxury comes with a price tag roughly 20% higher than a standard 3D theater without these little extras. My Partner and I only see a handful of movies in a theater each year. We figure for those movies we judge worthy of a night out, we might as well make it a true experience. (Also, those bathrooms. Seriously. That alone is worth 20% more to any spoonie with GI issues as part and parcel of their diagnosis…)

Unfortunately, the first time we saw a movie in our new elaborate dine-in theater, the experience was missing one detail that further explains why, in the end, it hasn’t only been the price tag that has limited the number of films we’ve seen in a theater each year. Closed Captioning.

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Shooting for the Spoons

A lot of popular wisdom is rather dubious when actually examined. For instance, the common career advice to, “Shoot for the moon. If you miss, you will still land among the stars.” Unless the flat-Earthers know something I really don’t, even good old Sol is much further away from us than the moon…

Another bit of dubious popular wisdom I hear regularly from would-be experts (who have usually never heard of most of my diagnoses before) is, “An apple a day keeps the doctor away.” I certainly am careful with my diet, but an apple a day does not keep the doctor away for me. In fact, following the common wisdom for most of my working life to eat as naturally as possible on business trips to minimize GI symptoms has been about the worst possible choice for me. On travel per diem – and thus not responsible for remembering expiration dates for the fresh veggies and fruit that I so often forget in my fridge for weeks until they spoil – I would load up on all of the fresh fruit in an attempt to keep the gastroenterologist away. And, yet, I always felt like my IBS symptoms were worse on business trips anyway. The inevitable refrain from the “apple a day folks” – and many of the doctors that were supposedly being kept away – was that it was just “my anxiety” exacerbating my symptoms. So, I both had to plan for disaster each time and for the bully-in-my-brain to refrain how it was my fault since I couldn’t just “relax.”

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You’ve Been Catfooded!

Don't you love when your dog looks at you like that? Or your cat? Little shits! I am your master, I am here to serve you...
Image: Two cats sitting on a sleeping human in bed. One cat is shaking the human awake with its paw. The cat tells the other cat, “the food is good, but the service is slow…”

Did I ever mention that my Partner and I are weird people? Like “gallows humor” and “eat anything on the planet at least once” weird? Or that we’re advocates for social justice? If not, you have officially been warned.

I may have mentioned before about how my kitty has PTSD from being abused, starved and abandoned before we got her. I don’t think I’ve ever mentioned that she also has kidney issues, old injuries that limit her mobility, and even more allergies than I do. If the abandonment anxiety alone wasn’t enough to prove she is my spirit animal, then the rest ought to guarantee it.

We suspect that her complicated medical issues might, unfortunately, have been the reason she was ultimately abused and abandoned. I mean, we’ve seen it done to vulnerable humans. It’s not much of a stretch of the imagination to assume it happens even more frequently to vulnerable kitties.

We didn’t know about her issues when I first started fostering her. I was just told to shove as much food and liquid into her as possible. She was too sick to eat, so anything I could tempt her with was automatically approved. I fell back onto gold-standard kitty addictions: tuna water and Fancy Feast. She ate both with gusto, and my Partner and I both quickly realized never to combine cheap cat food and smelly tuna in her tummy again. Let’s just say what she produced was thick enough to mortar a bunker and lethal enough to weaponize to use to clear out the bad guys holed up in that bunker at the same time. She put my two-ply lullaby to shame.

Nothing says a “third date” like an emergency trip to the grocery store to buy every possible form of air freshener in the aisle at nearly midnight. I say she’s “our” foster failure. And, in her mind, she is. She met both of us on the same day. But, technically my Partner and I hadn’t even DTR’ed at the time I got her, and her adoption papers are under my name alone. She’s “our” cat in hindsight, but, at that time, I think my Partner really showed his character by helping clean up after her when he had no official responsibility towards her, or me. I don’t regret it. That experience didn’t require half the strength that actually marrying me and handling my caregiving responsibilities demand. Heck, by the standards of my life it was humorous. It even had an actual resolution, which is particularly unusual in my life. One veterinary specialist, some kitty Prozac, and a lifetime commitment to buying her expensive allergen-safe cat food later, and her tummy troubles cleared up. (However, if her special food ever goes off the market, please send gas masks. We’ll need them.)

That experience has become a running joke for the trajectory of our relationship – and spawned another running joke that our kitty eats better than we do. How many people can read right on the can that their pet’s food is safe for human consumption?

We also watch a lot of Food Network, and while we were dating my Partner dared me to make him a meal that “highlighted” her wet and dry food in the same dish, Chopped-style. If I could successfully fool him into going back for seconds, he’d fork over for a Michelin 3-star restaurant willingly. I never quite remembered to do it when he’d remind me. We’re now married, so any gourmet meal would be funded out of pooled money anyway now. But, the challenge has always stood. And, I’ve always had on my mental bucket list – at least I have every 6-9 months or so when something reminds me of it – to undertake it anyway.

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Where’s Whoopsie #17: Two-Ply Christmas Lullaby

On the first day of Christmas, my true love gave to me

An extra roll of TP.

 

On the second day of Christmas, my true love gave to me

Two bottles of Miralax and an extra roll of TP.

 

On the third day of Christmas, my true love gave to me

Three gluten-free pancakes,

Two bottles of Miralax and an extra roll of TP.

 

On the fourth day of Christmas, my true love gave to me

“Oh, God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the fifth day of Christmas, my true love gave to me

Five minutes of straining, “Oh, God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the sixth day of Christmas, my true love gave to me

Six packs of undies, five minutes of straining,

“Oh, God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the seventh day of Christmas, my true love gave to me

Seven bottles of Pepto, six packs of undies,

Five minutes of straining, “Oh, God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the eighth day of Christmas, my true love gave to me

Eight clueless doctors, seven bottles of Pepto,

Six packs of undies, five minutes of straining,

“Oh, God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the ninth day of Christmas, my true love gave to me

Nine restroom breaks, eight clueless doctors,

Seven bottles of Pepto, six packs of undies,

Five minutes of straining, “Oh, God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the tenth day of Christmas, my true love gave to me

Ten stomach cramps, nine restroom breaks, eight clueless doctors

Seven bottles of Pepto, six packs of undies,

Five minutes of straining, “Oh God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the eleventh day of Christmas, my true love gave to me

Eleven cutie tooties, ten stomach cramps, nine restroom breaks

Eight clueless doctors, seven bottles of Pepto

Six packs of undies, five minutes of straining,

“Oh God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

On the twelfth day of Christmas, my true love gave to me

Twelve billion active cultures, eleven cutie tooties,

Ten stomach cramps, nine restroom breaks

Eight clueless doctors, seven bottles of Pepto

Six packs of undies, five minutes of straining,

“Oh God don’t come in here!”

Three gluten-free pancakes, two bottles of Miralax

and an extra roll of TP.

 

Happy Holidays everyone. Wishing you an experience that is a treat for both taste buds and tummy! And, if you happen to get the former without the latter, here’s also wishing you a private bathroom well away from the prying eyes of “nosy” family members and that extra roll of TP! Oh, and remember that self-care is nothing to be ashamed of during a stressful holiday season.

Have some holiday-themed Where’s Whoopsie’s because nobody wants to see #2-themed pages on the #1 most-anticipated holiday for a majority of America. 😉

 

 

 

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

Blog Awards Series #5: B is for Blog Awards

I am not saying “B is for Bedbugs,” because supposedly things are “happening” with that. The home is hiring a new exterminator to come tomorrow and – again supposedly – is going to deal with the code violations that resulted in the scary green notice. I’m not sure how much faith I have in either of these things, but there’s not much I can actively do until I’ve given them a chance to fail all on their own.

Having learned entirely too much about what to do to keep bedbugs out even before an exterminator comes by when a complex I lived in during graduate school got them – and finding the agency rather lackadaisical about learning from my lived experience – I’ll share it with you all. Food-grade diatomaceous earth lining the walls and furniture is a great way to stop bed bugs and other nasties from getting in if the neighbors have an infestation. It’s also a cheap and surprisingly effective after-care product once the exterminator does treat. I did my research as soon as I discovered my neighbors had them, bought that, and was the only person in a ten-unit apartment that didn’t get bedbugs back in the day.  I don’t think it was strictly allowed by my lease to do my own treatments, but at the time management didn’t care since it worked.

There’s no point in putting it down in my sibling’s room until the infestation is handled with entomological nukes first, but I keep hoping the agency will at least allow me to do the same after-care measures for my sibling’s room later. I’m not quite daring enough to just do them anyway as I did in grad school, because I’ve seen agencies use any technicality to boot someone, they barely wanted someone with a trauma history to begin with, and there aren’t really any other openings.

So instead B is for Blog Awards like C is for Cookie. If I have an enforced sit-on-my-hands week, I probably should get back to that “mental health sabbatical” portion of my not-FMLA. I’m hoping to do some baking. Baking too often seems incredibly overwhelming and not worth the spoons when the world is falling apart. But, I’ve always deeply enjoyed it when I can manage it. My original “balanced scorecard” included playing with inventing recipes as a thing that made me feel more like me.

Today’s other balanced scorecard questions are courtesy of Fibronacci:

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Where’s Whoopsie #11/Improv #7: Potty Mouth

What can I say? It’s been a bit of a $h177y week. Trauma guilt (see comments on that post if you want to hear about the new turd that dropped this week) is a dirty job. Dirty jobs call for Dirty Jobs.

I’ve been watching a lot of reality t.v. this week because that’s where my brain is at. I have been gravitating towards things that are less about people – because eff people – and more about the situations they are in: Naked and Afraid (survival skills), Deadliest Catch (crab fishing) and Dirty Jobs (hopefully self-explanatory.)

I just learned from the Discovery Channel’s Dirty Jobs that, in the historical Middle East, bedouins would consume fresh camel dung as a treatment for dysentery. Apparently, it was kind of like an old-school fecal transplant: top up the substandard human gut bacteria with some powerhouse camel bacteria and kick dysentery’s @$$ before it kicks your own. (Note: this only works with fresh camel dung. Using the older stuff just leads to more problems!)

I buy the concept. I do have to wonder who in history, however, first came up with that idea in the era before you could test such things in a sterile lab environment without any actual consuming required. Who was that human who first looked at the wrong end of a camel and asked, “I wonder what will happen if I eat the things that came out of this animal’s butt? Oh, hey! Maybe it will make things no longer come out of my butt!” This feels like it should have become a cautionary tale for a girl who claims to be down to try anything once that there is sometimes such a thing as being too adventurous.

That said, our assignment for Improv class this week is to be incredibly mindful of how we do everyday activities. Like, how we don’t grab a wine glass with a fist like a cup. We don’t even truly grab our cup like we often pantomime that we grab our “cup.” We actually flip our hand upside down and hold a wine glass underneath the wide part of the glass. We do ham-fist our mugs, however. It’s the little details like these distinctions in object work in Improv that really distinguish the professionals from the amateurs. Realistic pantomime is so much more believable than sloppy pantomime. Immersion is so much more fun for an audience than constantly breaking the Fourth Wall. Our assignment is thus to slow down and really pay attention to how we do the things we do each day. Mindfulness: it’s not just for trauma drama anymore.

Given that it is also IBS Awareness Month and I have already once legitimately performed in a scene wherein I was acting as someone straining on the toilet* for most of the scene, I have to wonder how far I should take the method acting?! Is there ever a point in bathroom humor where the pantomime becomes a little too uncanny valley? I mean 10-25% of us have been there. Probably more of us have if we’re spoonies. Ehlers-Danlos and other disorders come along with gut motility issues as a buy-one-get-one-free.

Is it funnier for an IBS-sufferer audience member to see the pantomime done well? Because on stage, at least, it isn’t them languishing in the compromising situation? Or does it just make it sadder to see it done wrong anyway? An actor doing it wrong implies they don’t have the lived experienced to do it right. It implies that even after the actor completed a specific assignment in which they observed how they completed everyday activities, they still never had the opportunity to “experience” what realistic bathroom distress looks and sounds like? I’ll never know. I have had the recent opportunities to observe the real situation in action. I “pushed” my limits in the name of accuracy on the throne and on the stage…

However, if there is a line for realism in Improv potty humor, I’m pretty sure that it stops somewhere around camel dung as a treatment for dysentery. The fact that I now know that fact might very well show up in one of my Improv scenes someday. We are encouraged to draw inspiration wherever we can. I will not, however, be observing how to pantomime that action realistically.

Happy Saturday everyone. Hoping your week ahead – like your stool – passes quickly and isn’t too hard to handle! In honor of IBS Awareness Month, which has periwinkle as its color, “digest” these three offerings and find the mistakes. There’s a periwinkle-and-brown Where’s Whoopsie for the awareness campaign, and I include two others that have brown and yellow. Because why not? When have I ever quit while I’m “behind”?

*For anyone wondering: the Improv game in which I engaged in some potty-mouth humor was a freeze-type game. Actors waiting in the wings would watch a scene until the on-stage actors naturally contorted into some sort of crazy physical pose, then they would call “Freeze.” They would tag out the actors, assume their poses exactly, and start a brand-new scene starting from whatever those poses suggested. I had been partially squatting and looking angry – about to rush a dude in a bar – at the time freeze was called. The replacement actor went with the other obvious solution for what two folks near to each other, squatting, and looking stressed could be. The new scene with him and me involved him coaching me through a “difficult food baby delivery” like a Lamaze coach. I just had to “go with it” it, as they say…

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

I Love You More than Salt

Today has been lousy. There’s no other way to say it. Its lousiness has stemmed primarily from two causes: dysautonomia and C-PTSD. (I will write dysautonomia and C-PTSD officially, but I could just as easily have claimed dysautonomia and office politics. The two are kind of synonymous when C-PTSD views any perturbations in power dynamics that result in strong words being exchanged as an existential threat. The bully-in-my-brain helpfully comforts me while triggered with the alternative idea that office drama doesn’t always have to mean that I’m not safe. It could just simply mean that I am safe but suck.)

I’ve been in a dysautonomia flare the past three days. (Have we established yet if it’s appropriate to call an uptick in autonomic nervous system symptoms a “flare” when it’s not necessarily an inflammatory response?) I’ve been cycling rapidly between blood pressure extremes for the past couple of days. Today, I started out borderline high and watched it tumble after completing the rather physically demanding requirements – aka getting up and walking around for fifteen minutes as a break after a couple of hours on the computer – of my job. I usually don’t faint until I dip below 90 systolic, which fortunately is relatively rare with my meds now, but tumbling from 145/70 down to 92/54 in about fifteen minutes isn’t fun even if I do somehow manage to stay upright. (Also, yes, for those asking, I do keep a wrist blood pressure cuff at work. Those are real numbers. Not my worst, by a long shot, either. One of the two final numbers was technically in the human normal range, after all!)

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Where’s Whoopsie #4: I’m Aware that I’m Rarely Aware

Huh. Dysautonomia, ADHD, and mental health share an awareness month! (Mental Health Awareness Week this year was October 1-7. Oops. I guess I missed that one!)

It’s a pity that migraines get June for their awareness month. I was this close to only having to remember one month on this blog. That would have been incredibly handy for a girl with ADHD. Now, I know that May is Mental Health Awareness Month, and June is PTSD Awareness Month, but couldn’t I really just stick with the week, not the months? It’s hard to be aware with a disorder in which lack of awareness is a core diagnostic feature.

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POTSies Against Nazis

I have a colorful new diagnosis. (I also have gastritis, probably as a result of being allergic to everything.)

I’m not inflammatory (IBD), but I’m pretty salty. Postural Orthostatic Tachycardia Syndrome (POTS) is a type of dysautonomia officially characterized by a heart rate increase of at least thirty bpm upon standing. This tachycardia is often associated with a drop in blood pressure (orthostatic hypotension), though clinically OH warrants its own additional dysautonomia diagnosis. There are multiple types of dysautonomia. I seem to be able to catch ’em all.

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Subway Sociology #1: Showing Ini-$h*!-ive: Business Meetings with IBS and ADHD

I just came back from a business meeting in another state. A small group of us went. We stayed at different hotels, and we agreed to meet up half an hour before the meeting to make sure no one was late. The meeting was in a city with good mass transit, so my boss encouraged us to take the subway to get to our meeting. It would be “less complicated” and cheaper.

I had a terrible, no good, very ADHD time getting there. First, I got lost on the way to the train. Big surprise!? Then, the train readers weren’t taking credit cards because of a malfunction, and I never carry cash. Using cash means I can’t track my spending on my statement, which is a recipe for frivolous ADHD spending. The only ATM around was one that needed a branded debit card to enter before business hours. Guess who isn’t a Bank of America customer, and thus couldn’t use her own debit card to unlock the doors of the 24-hour ATM? I was on the verge of panic when a passerby finally took pity on me and unlocked the door with her card.

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