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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Where’s Whoopsie #14: Where’s it Hurt?

Traveling and being unwilling to bring anything I have actually invested time and effort in with me to Hell means I haven’t posted a Where’s Whoopsie since July! I suppose I could have posted some of my decidedly not-safe-for-work swear word drawings that I relied upon instead of geometric patterns to express my feelings during my time in the 9th Circle of Hell, but even I don’t care to see them, though swearing out loud feels like a great way of reminding myself I’m not in that place anymore. I’m fairly confident some of those swear words leaked into my blog posts anyway over the past few months.

However, I feel like posting something just because I need to mentally distract myself, and typing hurts physically even if it might help mentally. Thus, I’m using the fall back of pretty pictures to make up for a decidedly lackluster pain-fogged blog post. Something appears to be going “around,” and proximity to sick people has resulted in the inevitable acute illness coupled with massive amounts of all-over pain. I would dearly love to understand how bacteria and/or viruses exacerbate joint problems caused by defects in collagen, but they certainly seem to. Acute illness seems to have triggered a truly agonizing all-over EDS joint-pain flare. I’m exhausted but on my second night of painsomnia. The next time someone compares their cold to my chronic illness, I’m going to remind them that we get all the same bugs, then have to deal with another week of our normal symptoms being on overdrive to top it off.

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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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Trust and Mental Health Treatment (Part 3): What the Asses Meant

Assessment (noun): the act of assessing; appraisal; evaluation

Also known as a determination of what a bunch of asses meant.

Psychiatrists have fifteen minutes with their patients, so it’s already a reasonable assumption that they base the majority of their assessments of patients on immediate impressions, stereotypes and whatever was current when they graduated medical school and last bothered to read a journal article – which could be fifteen years or more prior.

There aren’t a ton of psychiatrists covered by my insurance, period. Even “good” insurance in America is rarely good for mental health. There are even fewer who prescribe stimulants for ADHD. Once a month I make time out of my weekend to go see one of those to obtain a hand-carry prescription. I then take that hand-carry prescription to my pharmacy to be filled, where I am asked to verify my identity with a form of ID at least twice, report my address, and then have the exact date and time that prescription was filled entered into a state database to ensure I don’t fill the next month’s allotment even one single minute early.*

I am not harassed during any of this process because I present well. I’m “high functioning,” as I’m repeatedly told. However, my psychiatrist’s office isn’t trauma informed – or even that nice to the majority of their patients. They are one of the few that will take those on public insurance, and they don’t feel they have to be nice, I guess. They’ll fill their waiting rooms and make their money either way. The waiting room is regularly filled with a very diverse set of clients, many of whom have ADHD. I go there even though there are clear issues because they are closest to my home and offer weekend appointments. I don’t even know if the other options would be better, so I just stick with convenience. I hate a lot of what I see there, but I really do need weekend appointments badly given how late I work. I don’t think I could maintain that “high-functioning” job that helps so much in the mental health world if I had to take time off every month to go to a psychiatrist appointment that takes an hour (even though we’re only actually seen for 15 minutes) out of the business day. I do have a couple of other options since my insurance isn’t public, but not many.

It saddens me so much that others don’t even get to weigh those limited pros and cons in their choice of psychiatrists to help them with disorders that should be no more shameful than a broken leg or diabetes.

Continue reading “Trust and Mental Health Treatment (Part 3): What the Asses Meant”

Class Discrimination and the Republican Health Care Bill

In my last two blog posts, I have talked about my fears of, and experiences with, medical discrimination. I haven’t talked about medical bills, though they are rapidly stacking up. I was raised in the middle class, and my current income from my numbers-heavy job keeps me there (so far. ADHD isn’t a great thing for my career, exactly, as I may have mentioned.) I am fortunate that right now that I can pay those bills. Too many Americans already can’t, and what we are about to further do to Americans with preexisting health conditions is an abomination.

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Trust and Mental Health Treatment (Part 2): Dropping the F(ibro) Bomb

I may or may not have fibromyalgia. Or maybe I should say that I have fibromyalgia if I accept the diagnosis? That will maybe make more sense – well, maybe make some sense – after I explain, hopefully? Honestly, if it ends up making sense to you, readers, please let me know. I’m still confused!

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Trust and Mental Health Treatment (Part 1): Why Do Doctors Assume I’m Going to Answer a Mental Health Screener for Strangers?

Medical professionals have started asking me questions as they take my vitals like, “How often do you feel bad about yourself – or that you are a failure or have let yourself or your family down?” This whole blog is about how often I feel like a failure, and how I’d like to feel like that less often. The answer is, more likely than not, “more than half the days” in the past two weeks. These screeners still generate anxiety, even though I expect them now. I was at my GP the first time, about a potential sinus infection, and it was shocking and scary to be asked deeply personal mental health questions by a disinterested nurse, whose name I never learned. After the visit, I looked up the questions. Doctors are being encouraged to give community mental health screens during all routine medical appointments. Apparently, they received the advice to give them, but no training in trauma sensitivity alongside that advice. Why do people think I’m going to answer anything that personal honestly under those conditions? Are they really that uninformed about trauma responses?

Continue reading “Trust and Mental Health Treatment (Part 1): Why Do Doctors Assume I’m Going to Answer a Mental Health Screener for Strangers?”