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.

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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?

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