Messages in a Bottle #13: Placebo Effects

lol - so true of periodic paralysis I Could Use A Standing Ovation, Could You? The Journey of An Anxious Girl: that's a pain in my ass
<Image Text>: Doctor says to patient, “You have an extremely rare, hard-to-treat disease. Are you trying to make me look bad?”

I bought pink Himalayan salt pills today instead of my usual generic salt capsales. I know some people think the “highest amount of trace minerals of any salt” are independently useful, but my default assumption is still that salt is salt. I have a scientific image to maintain at all costs, after all. My conception of myself as intelligent largely depends upon carefully managing my own treatment in line with medical guidelines gleaned from published peer-reviewed sources with a preponderance of evidence, etc. etc. etc.

I’ve been called stupid plenty of times in my pre-ADHD-diagnosis days, so even though I have an excellent track record of identifying what is going on with me and my sibling – even when the medical establishment itself is befuddled – I have only ever learned to (mostly) trust myself because I can always cite my sources. It isn’t just me claiming something is true, it’s “the literature.” The bully-in-my-brain is far harsher than any true academic peer review I’ve ever received. I can’t point to a pile of studies that suggest that one type of salt is better for dysautonomia regulation than another, so thus it isn’t. It could be the greatest thing, since, well, normal salt, and I would remain a skeptic until there’s been at least one meta-analysis.

I’m not buying the pink stuff because I think it will work better; I’m buying the pink stuff because I’m hoping it will taste better. I have heard from numerous qualitative narrative sources with “lived experience” (aka Facebook groups) that it tastes better, or, at least, that it comes with a better pill coating that makes it taste less like anything. Even after two years of taking salt pills, I still gag a little three times daily when I take my prescribed grams of salt daily for dysautonomia. I know there are white salt pills out there that are so well-designed that they truly do taste like nothing. In a world where science can design “burpless” non-odorous fish oil tablets, simply masking the taste of pure salt isn’t an intractable user-design challenge. But, those resulting fancy “sports performance” salt pills are almost twice the cost of simple salt pills. Since I take half a dozen of them daily, that cost differential adds up.
Today, though, Amazon had a sale that reduced the cost of pink salt pills with an external pill coating to the same as the uncoated white salt pills that I normally buy. I jumped on it. Even for a month, it would be nice not to have to choke down the taste of pure salt in the morning. (If you don’t have dysautonomia, grab your salt shaker and shake it into your mouth immediately upon waking up. That should give you a sense of why taking my morning uncoated pure salt pills remains so unappealing even years later!)

I readily admit that this sale could set a dangerous precendent as – after a month of potentially not gagging a little three times daily – I might not have the willpower to return to the cheaper stuff. I still suspect that even if I do end up shelling out more regularly for pink Himalayan salt tabs, it will still be because of my taste preference, not because some salt is better than other salt. I have that self image to maintain, after all.

I could be wrong though. I have an excellent track record of identifying my own symptoms once they rise to the level of being so intrusive I can’t ignore them anymore. I can be fairly oblivious to sub-threshold issues. This morning’s purchase reminded me of one of those times when I convinced myself I was falling for the placebo effect, but I had accidentally stumbled onto a real medical issue that benefitted me to treat but would probably never have risen to the surface if not for my own ADHD inattentiveness.

This week’s Message in a Bottle is the story of how I accidentally empirically detemined that I was deficient in zinc simply because I failed to plan ahead. I wrote up the experience in a post that I originally intended for my nascent blog in 2017, but by the time I actually got the zinc test that confirmed I was deficient, I had forgotten about it. Any memory that I had ever written that post remained lost to the far corners of my brain – though I do take zinc and get my levels checked every six months – until this morning. It’s a bit of a mistake to claim that there is no filing system within the ADHD brain. If there wasn’t, I’d never have been able to retrieve the memory in response to any reminder at all. It’s more like…there’s a poorly designed filing system based on quixotic semantic associations that change every few months.

I couldn’t retrieve the appropriate filing index for “I once wrote a blog post about wondering if I had zinc deficiency” when I was tested for zinc deficiency. That would be too simple. I could retrieve that post after buying pink Himalayan salt pills this morning because the index was actually tied to the semantic category of “all the things in the world that might cause placebo effects.”

Also, for anyone wondering, yes, there have been a few published studies suggesting that zinc can mitigate some ADHD symptoms in those with measurable deficiencies. But, its effectiveness seems to be limited to symptoms of hyperactivity and impulsiveness. Thus, zinc itself is probably not ever going to help me remember whether or not I have written any posts about zinc deficiences. However, paradoxically, having my rather “unique” mental filing system and network of semantic associations has actually been one of the most beneficial aspects of having ADHD for me as a scientist. While everyone else is thinking “B” when “A” is mentioned, I’m usually the one activating “X, Y, Z” and going “but, umm, what if it was actually this…” (Also the one going “I need to zinc think about this for a moment” because once I realize what they might be missing, I also realize what I might be missing, too!)

Continue reading “Messages in a Bottle #13: Placebo Effects”

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Subway Sociology #7: Weed Out the Weak

I have spent many years traveling on a graduate student’s budget. Travel was – and is – my preferred way of handling the Christmas holidays, which would rank second after the week-that-shall-not-be-named (aka this one) on my list of least favorite times of the year, except for the fact that my travel tradition actually makes it one of my favorites. (At least, in those years when I can afford to travel.)

Traveling for mental health is my way of flipping the script on what would otherwise be a traumatic time of year, but given that I spent years making an income as a graduate student that didn’t quite leave me destitute – but also didn’t qualify as “comfortable” either – I never got used to the luxury of rental cars. I have never rented a car in any city that had viable public transit. I’ve had my fair share of ridiculous moments trying to navigate unfamiliar transit as a result, but I can’t at this point imagine ever renting a car in a transit city after so long getting by without one. Why pay eighty bucks for parking when I can pay ten dollars for a day transit pass?

I certainly can’t imagine renting one in my own city. I never learned to drive here. We had a car when we first moved, but the lack of street parking, the prospect of “parallel parking” if we ever did find parking, the feet of snow dumped on cars in the winter, and the extortionary private garage parking fees required to avoid dealing with any of the former quickly led to us giving it up. Even for the brief period that had a vehicle, we never drove to any popular tourist locations.

My Partner’s grandparents were traveling with childhood friends who had moved to another Southern state as part of an annual get-together tradition, and their stop in our city was one among several on the East Coast. (I continue to be amazed that there are people in this world who have maintained friendships for more decades than I have been alive, but this, like young marriage, seems to be the norm in the South.) Their hotel was outside the city because hotel costs are possibly the only thing more disproportionate than parking (or rent) in our city. They asked us to show them around, and we (naively) assumed they meant by subway. However, they were not comfortable using public transit, even with locals to personally shepherd them from Point A to Point B. They seemed convinced that the subway would be unsafe, dirty, and unreliable.

Continue reading “Subway Sociology #7: Weed Out the Weak”

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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