Where Would the NHS Rank Trauma on the Pain Scale?

Hi everyone,

First, I want to say thank you to everyone who talked me through the past two days. I made it out of that Sheraton break room eventually, and I did manage to give my presentation the next day. I know some people asked what I was presenting on, but in the world of research – startup, policy, or academia – your research is probably the most tell-tale marker of your identity. If I told you about my presentation, I’d be telling you who I was, who my bully-of-a-boss was, and – by extension – who my sibling and all the various systemic abusers in the 9th Circle of Hell were all in one easy Google search. I’m sorry, that doesn’t feel safe. Hopefully, the grad students and professional researchers among you understand.

The bedbug place lost its license, albeit not for the reasons I originally expected. I still don’t know the reason. They also appear to have chosen not to undergo the appeals process they – as providers – are entitled to in the 9th Circle of Hell. (The 9th Circle of Hell, of course, has no corresponding client appeals process or any independent way to determine the outcomes of license inspections. Yes, this is technically a violation of federal law, for those few of you in the know who are wondering, but it has been ignored by the feds for at least two years.) They packed up, fired their employees, and for hours it seemed like they were prepared to dump several facilities worth of patients on the street.

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Eye Rate

Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.

Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.

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Where’s Whoopsie #13: I am the 1 in 5

Happy Fourth of July from one of the 1 in 5. Which 1 in 5? Well, probably not the one you are immediately thinking. Yes, I am one of the 1 in 5 Americans who experience mental illness in a given year. I’m also one of the almost 1 in 3 Americans living with multiple chronic conditions (and one of the 30 million of us living with five or more diagnoses!). However, I’m talking today about being one of the 1 in 5 Americans who have gone to a protest since 2016.

Our country was founded on ideas of Life, Liberty and the Pursuit of Happiness. Those are being denied to too many of our countrymen, including members of my own family. I believe it is patriotic to hold our leaders accountable for being the country we claim to be. My advocacy has taken place in intimate courtrooms and on huge street corners. Because I am, however, also one of those other 1 in 5s and one 1 in 3s, protesting isn’t always the most straightforward thing. Thus, this Fourth of July, I thought I’d post about how I have pulled off attending protests with ADHD, C-PTSD, social anxiety, depression, migraines, dysautonomia, Ehlers-Danlos Syndrome, IBS and just the general B.S. that – while they aren’t evil incarnate like the Republican leaders willingly setting Americans up for injury or death by dismantling our social safety net – even the well-intentioned Progressives who arrange protests are still often so very clueless about how to make protests inclusive for differently abled Americans.

Thus, I present Lavender’s Fourth of July Guide to Protesting as a Spoonie

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Improv #9: In-city-cure attachment

I’ve lived in a lot of places in my life. Enough that I’ve only ever stayed put long enough in my adult life to be called for jury duty once, during graduate school. I’ve lived on both coasts and in the middle. I’ve lived in cities I’d go back to in a heartbeat if a job presented itself, and I’ve lived in cities that I ran from as fast as humanly possible.

I’ve said repeatedly that any place I live in that isn’t the 9th Circle of Hell is home, but I’ve also said that home is nowhere. Each city has been a steppingstone. It has been something impermanent to be enjoyed for a few years and moved on from when career or family beckoned ever onward. I’ve never fully believed that I’d ever stay in one place long enough to truly settle down, even as I carefully chose my current city with the stated hope of finally finding a way out of the 9th Circle of Hell for my family situation for good. I look forward to the day in a few years when I can legitimately say I’ve lived away from the 9th Circle of Hell more years than I’ve lived in it, but it would take a very long time to be able to say I’ve lived in any one place longer than I walked the cursed ground of my childhood.

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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 #10: Fireworks

When putting out metaphorical fires, it’s generally a good idea not to add any literal ones into the mix.

I didn’t this past week, but it was a nearer miss than I would have preferred.

I spent most of my twenties self-medicating my ADHD with coffee. My grad advisor used to text me before conference presentations to make sure I’d gotten my daily dose. He observed that I was always calmer after a venti double shot. I credited a coffee shop for my thesis acknowledgments. I always wanted one of those necklaces with the chemical structure of caffeine, but then I felt guilty because I somehow never managed to have the physical effects that other coffee addicts wore like badges of honor as overextended graduate students pulling long hours. How could I claim to be a true caffeine junkie worthy of her necklace when I truly could stop at any time? It was everyone else, not me, who practically forced me to keep imbibing! How could I be a true caffeine addict when I didn’t suffer for my art with shakes and withdrawal symptoms when I did stop, and when I was even one of those lucky migraineurs who benefitted from caffeine instead of it touching off further migraines?

I have fallen out of my daily coffee habit post-diagnosis. Coffee has nothing on real ADHD meds, and it’s expensive when it needs to come from a coffee place within walking distance of my work in a financial district. It is, however, still a psychological crutch I rely upon during stressful periods in my life. I am not sure if it’s the coffee itself, the walk to get the coffee from the local barista, or even the enforced social interactions with my office mates while I make the rounds and ask if they’d like a cup, too, that is most helpful, but, in any case, I will still overspend on fancy coffee as a coping strategy. The ritual of getting coffee gives me a much-needed emotional breather during the work day on the bad days.

I tend to forget my coffee on my desk until it is too cold to be worth drinking. As a result, I also own a little electric coffee warmer that I have had since grad school. I can set a paper to-go cup on it, and it will keep the coffee at just the right temperature to nurse slowly over an hour or two. The warmer has never burned the paper cup, and it has an impossible-to-ignore blinking orange light that flashes while it is on.

This is helpful because I am too oblivious sometimes to feel physical sensations like heat radiating off hot burners. I have ADHD, and, as if that wasn’t enough, I can function in a state of partial dissociation on top of it. I need a highly salient visual cue that something is, in fact, hot to save me from myself. Little things like on/off switches alone aren’t always enough to catch my eye. Heck, I am so inattentive that I sometimes must resort to physically unplugging my flat iron from the wall before I leave in the morning just to be sure I took care of it, but I’ve never forgotten to turn off my coffee warmer. The orange LED light reminds me. Or, it used to remind me.

It failed me last week. After my last cup of coffee, I never turned the warmer off. I had a moderately hot disc situated next to my hand all day and was completely oblivious to its warmth because there was no orange blinking light. I went home over the weekend and left it on. I continued to be oblivious most of Monday. Later in the afternoon when I went for more coffee, I finally noticed the problem.

The coffee warmer was more than moderately warm! It was genuinely hot – but thankfully not sparking or singed! Its heating coil must have been very well engineered! I’m not sure whether to curse the brand for their failed LED light creating a risky situation in the first place or bless their engineers for creating a heating unit that could stay on for so long without catching fire.

I have said many times before that I am ambitious and hope to eventually see my career catch fire – but not like that!

You know how some companies ban space heaters in winter? Do companies need to start banning coffee warmers, too? I disposed of the coffee warmer in question, but I know I must eventually decide whether to buy another one. There are more expensive ones that claim to have an auto shut-off feature. They aren’t from the same company, though. Should I stick with the brand that didn’t fail me when the heat was on, even though it doesn’t have an auto shut off feature? Should I buy the more expensive warmer with the auto shut off feature and assume it’s also well-enough designed that it, too, will never even burn a paper to-go cup? Anything less than that level of heating regulation probably would have gotten me fired at work! Should I give up and decide I can’t have hot things?

Or should I assume I’ll learn to be more attentive after this scare such that it doesn’t really matter which brand I buy?

Spoiler alert: no! I don’t know whether I’ll buy another coffee warmer for work, or which I’ll invest in if I do decide I trust myself to have one.

I do know; however, not to rely on myself alone. I am way too inattentive for that! Clearly, even supposedly idiot-proof features don’t always work. I didn’t fail to notice the flashing orange light of danger on my old coffee warmer – it just failed to flash! Yet, I’d be an idiot to think I’m not the idiot those safety features were designed for in the first place.

Have one fiery-colored Where’s Whoopsie this week, and two serene pastel pink colored ones. Because, after all, there was no fire. What a relief.

 

Where’s Whoopsie #7: Merry Christmas to All and May You All Be Alright!

Twas the Night Before Christmas and in her flat on tenth floor,

Lav claimed indifference to doing her chores.

Compression stockings were hung in the bathroom with care .

Oh, who are we kidding? They showed wear and tear!

The kitty was nestled in laundry unfolded,

Knowing her owner hadn’t the heart to scold her.

And Lav with her blood pressure cuff and glass bottle

Gave up and to the sink for a refill did tottle.

When out in the hallway there arose such alarm

Her partner put hands to front door in case it felt warm!

Then to the peep hole Lavender…well, not quite “dashed.”

Wondering which of her neighbors were being so brash.

Fluorescent lights left the hallway aglow

Making it seem migraine aura explained sights below.

When what to her dazzled eyes should should say “Ho!”

But a hefty old dude and some hooved creatures, yo!

With red ruddy eyes and a belly so puffed

Lavender checked him for stroke and offered her cuff!

More rapid than drums Lav’s heart beat in her chest

But old Nick was quite healthy. He’d pass the tilt test.

Now, DASHER!, now, DANCER! now PRANCER and VIXEN!

On, COMET! on CUPID! on, DONNER and BLITZEN!

Out the floor! Out the hall!

Now, dash away! dash away! dash away all!

As dry heaves we’re hurled – and the dizziness came nigh –

Lav begged a ride. Nick feared she’d faint and fall from the sky!

Now up to the flat top the coursers they flew,

With Lav’s salty snacks – no cookies –  so had to make do!

Her partner checked her over and urged she keep drinking.

He smiled at her “proof,” but thought she was overthinking.

Yet as he tucked her in bed – and begged she settle down –

Back through the window came St. Nick with a bound!

No dirt on him – not wrinkles nor speck of chimney dust.

Modern Santa used dry clean and made no more muss.

He was hip to the WiFi, and he used Google maps.

But losing GPS signal was a load of ho ho…crap!

Could he borrow her WiFi (and maybe more snacks)?

Update Google maps and get back out and on track?

Lav’s partner just nodded, now made a believer.

He slipped back to the bedroom to wake and retrieve her.

Though a hazard to navigate laundry and clutter,

Lav’s reindeer-speed downloads set Nick’s heart a flutter!

And as he heard that telltale package go crinkle…

His eyes lit on Glutinos and sparkled and twinkled!

His droll little mouth curled up in a huge smile.

Now here was some sustenance that was more worth his while!

The three shared some tea and some gluten-free pastries

Kitty kibble it seemed, was to reindeer quite tasty!

Though Lav and her partner offered St. Nick more respite,

The night was still young. Nick had steps left on his Fitbit!

He filled up their stockings with Squishies and fidgets

With such deft sleight of hand none saw his quick digits!

And giving a whistle, he hopped back out the window.

Tucking and rolling, landing in his sleigh with some show!

And they heard his goodbye in a jolly old croon:

“Happy Christmas to all and to all a few spoons!”

 

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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Improv #3: Always Look on the Bright Side of Life?

The bully in my brain hasn’t yet wised up and rescinded the strange exemption that it seems to have granted to Improv, but the migraines have.

The previous week was a five-out-of-seven migraine days week. This week has been the same. That’s 5 days * 2 weeks equals 10 migraine days. If this continues next week, I will squeak into chronic migraine territory for September while well-managed medically. While this has been my norm for much of my life, it hasn’t been for a while.

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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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