A Vague & Menacing Agency

  • Wherein I regurgitate facts, and pointlessly

    I wrote a long-ass response to a rando youtube commenter today, then decided it was pointless to press enter there. I’m pressing enter here instead! You’re welcome!

    Disclaimer: All of it’s about the US healthcare system from the perspective of somebody who fits under the umbrellas of several marginalised categories.

    ​​⁠All your arguments so far suggest that you’ve not required any kind of ongoing care within our healthcare system, or you otherwise vicariously found out what that experience can be like. If your experience with long-term care is an outlier on the good side of that curve, congrats.

    Good Insurance and Good Healthcare aren’t available to all citizens for a variety of reasons. Our medical care system historically has a problem with providing care1 and insurance for certain demographics. These groups include women, people of colour, trans/NB/gender non-conforming people, various disableds/chronic illness havers, indigenous people, lesbians, poor people, immigrants, unmarrieds, gays, child-free people, veterans, and other marginalised groups.

    These are failings on the part of healthcare-professional schooling and training; healthcare administrators; healthcare workers who can’t overcome their biases and prejudices in order to treat patients; relevant companies like pharmaceuticals, insurance, medical supplies, long term care, etc; lobbyists; all our politicians, and other involved people and roles I don’t even know about. It’s not a moral failing nor the fault of the people to not have access to either insurance or healthcare, though many people intentionally voted for politicians who said they think those circumstances are desirable.

    We’ve had a “wait til it’s an emergency” system for decades, which got worse with Covid. Major medical systems generally want doctors and other people with similar decision-making capabilities to see as many patients per day as possible. Many patients with complex health problems have to demand care over and over and over again, some at dozens of doctors. It takes months to get an appointment with a specialist, and that’s just for a consult. They might not even be capable of helping. If specialists can’t/won’t help, it’s up to primary care/family doctors to sort out. Suck it general practitioners!

    Comparing and contrasting data trends; comparing and contrasting theories about how healthcare systems are supposed to work domestically and internationally; and comparing and contrasting the implementation of theories all are pointless if any of the discrepancies don’t get sorted, and the actual patients involved don’t get care they need. Policy holes that only affect some people are still failures.

    This is why regulation is necessary. The point of it is to fix the parts of the theories and models that don’t work after application. They will all fail in some ways because they’re implemented by people. People are biased. People make mistakes. People can’t own up to and apologise for those biases and mistakes. People repeat their mistakes over and over again, refuse to grow, and some eventually stop apologising.

    Ignoring that there’s inherent problems with the language of many healthcare-related laws and policies, and that they’re frequently poorly implemented at many levels, doesn’t make the problems go away. Faulting people for having health problems, for having problems with bad policies that sometimes target them, doesn’t make the problems or the people go away. Some of those people will die, but there’s always gonna be more people and more problems, barring a cataclysmic human extinction event. Or an alien takeover. Or a revolution staged by our robot overlords.

    Your comments about the Affordable Care Act, left-wingers, and right-wingers serve…what purpose? Conservatives in the 70s did help create some version of a plan for a better healthcare system. However, when actual implementation of similar philosophies became reality under President Obama about 50 years later, it was conservative politicians holding up the process until they got what they wanted: less regulation. People who pushed for that don’t really seem to understand, or care, or both, that that translates into poorer healthcare outcomes for everybody, not just for the demographics they don’t appreciate.

    Politicians have allowed themselves good and tax-funded healthcare, though, so that’s cool for them. Ever since some of those same politicians in the 60s recognised that more people will need their healthcare paid for, the national conversation about it has been decades of complaining and stalling so they, lobbyists, insurance underwriters, and other babies who refuse to be kicked off the taxpayer teat oligarchs can get richer.

    This is unsustainable. Unfortunately, many of us have been convinced that the real health2 of our entire population matters less than a few dozen or so people getting stupid rich. It matters less than politicians, popular political commentators, and others who think they have standing being able to yell and cry about how some people don’t deserve healthcare. These observations are based on my own consideration of the history of behavioural patterns in people of middle North America.

    I don’t fucking know what the solutions are, and nobody’s asking me. But, perhaps we could start with giving trans people the healthcare they need. Yuh know. We could all put our differences behind us. For science. You monster.

    Video with still image of Glados, the sentient AI villain of the Portal games, as background. Glados’s form sort of resembles that of a female human flexing backwards, if you broke her hips, and replaced the head with the wheel well of a car, and installed a big robotic eye in the center of the top. Audio says, “Okay. Look. We both said a lot of things that you’re going to regret, but I think we can put our differences behind us…for science…you monster.”

    1 Care: Ethical research, ethical education, and desired and measurable treatment outcomes.

    2 Real health: Health that’s measurable, either by test or by self-report. Has nothing to do with normative healthcare ideals based on bad science, eg skinny is good and fat is bad.

  • Am I over par?

    Dang I haven’t written here in a long time.

    I might have had a stroke, and if it’s not that then some other condition is causing similar symptoms. For all of the gaslighting I’ve withstood, both from medical “professionals” and friends/family, this revelation is both a vindication of and an explanation for a lot of my health problems.

    You gotta be the unable to control your body/bleeding out on the floor kind of inconvenienced to get believed. Even if you look the part people will use it against you.

    I’m so impotently angry, frustrated, sad, disappointed, confused, anxious, just fucking exhausted.

  • It’s been a long time

    I want there to be some sort of intro here but I also don’t know what I want it say. About a couple months ago I (at 41) was diagnosed with Autism Spectrum Disorder, 8 years after an ADHD diagnosis*. Both got missed because I masked so well, and because so many boys with support needs in my family set the golden example for who’s “supposed to be different.” In 2020 my therapist suggested I get assessed and after I got over my initial “I can’t be autistic!” rationalising, I wanted the dx for at least a couple reasons.

    There’s more supports I should qualify for now, in addition to my therapist and my county appointed life coach (ARMHS). Getting dx’d as autistic explains so much about me and my life, and I feel way less bad about working so hard at everything and getting nowhere. I don’t have any close autistic friends, but I still feel like I’m part of a group that understands how important a dx is or can be, what kind of background generally comes alongside being autistic, and what it means to be autistic/have that label. It’s nice to know I’m not that different, that I understand way more than people give me credit for, that I’m not Weirdo Town, that I just have a different operating system.

    I’ve been researching a lot; reading articles, reading lots of posts in subreddits for autistics, and watching videos made by autistic people. There’s so much information and support that is designed for the parents of autistic kids and at autistic kids, because autistic kids don’t ever grow up you know, or learn to advocate for themselves or anything</sarcasm>. Regardless of who it’s supposed to be for, a lot of it is ignorant and/or abusive, which is frustrating, anxiety-making, and infuriating, at minimum. Media written/created by autistics tend to be more informed and unabusive, but it can take a lot of digging to find that information/support/community.

    In our last meeting my life coach suggested I might could be an autistic advocate. I think I already am just by not being ashamed of who I am and being willing to talk about it, but I would like to more actively advocate for autistic people on a larger scale. I bought some books on how to better manage my life and to self-advocate to that end, but I also need time just to process more before I can, I dunno, be a “better autistic?” Except, I suppose it’s just like being loved – you don’t have to know all the things about self-advocating in order to advocate for others, and to deserve others advocating for you. I guess maybe I could find autistic communities and interact, but that feels like a lot too, somehow. I’ve grown so much just in the last year, and in general already feel like I pulled myself to the top of this mountain of introspection, physical/mental illness, assertiveness, and (in)decision.

    My TSH finally rose above “normal” (over a year after thyroid antibodies were found), so my endocrinologist put me on synthetic thyroid hormone while saying she didn’t think it would do anything. Spoilers: I feel a bit better, my TSH is over half what it was, and I’m to keep taking the medication. She hasn’t dx’d me with hypothyroidism, though. Some doctor, possibly the doctor who in his first visit with me told me all my symptoms are psychosomatic, dx’d me with Chronic Fatigue Syndrome and didn’t say a damn thing to me about it. The last several years doctors have been incredibly reluctant to dx me with anything, but when they have many of them were wrong. Some of that isn’t their fault, but if I have to jump through 84 “good patient” hoops to get even a wrong dx, shouldn’t there be some more…support from them? It’s not my fault that whatever’s making me ill is apparently unknowable.

    I feel like I reached some kind of plateau. There’s more mountain to climb obviously, but I want to rest, or figure some stuff out, or something, you know? It sort of feels like I’ve been resting for ages, but I know that’s not the case. Being chronically ill and/or neurodivergent is a job you don’t get to leave, and being undiagnosed makes it harder. So, I don’t really know what “rest” means right now. Perhaps all the meaning I need will magically appear, along with my own Yoda or fairy godmother to guide me.

    * I said “diagnosis” so many times in this it irritates me, but I’mma yeet it into the intervoid anyways ~~

  • Idk how to title this

    I found out via mail – because I requested the imaging and report of that MRI from September – that I have mild stenosis and moderate left and mild right facet arthrosis in my lower spine. When I say that my jaw dropped when I learned what facet arthrosis means and that I was friggin right when I thought I might have stenosis –

    About a month ago, before I learned about any of this, I sent them an email asking if it was possible I had cervical instability and can I pursue that route with the doctor. A woman called me and said I should continue to follow up with rheumatology since my ANA was positive and to see a neurosurgeon; no referral or other information. Then I found out about the report from the NP and sent the two emails.

    Another few days later, another woman called me and said I didn’t get told because my results are mild and it wasn’t deemed important enough, but at the same time she scheduled me an appointment with the same doctor. The same day I received the report, which was after both of those calls, I received a letter saying I didn’t get told because of a communications/technology blackout/breach at the clinic. Which is it, Chad?? My doctor’s name is actually Chad, which is fucking hilarious now that I think about it.

    It helps explain the joint and muscular pain that have been slowly increasing for the last year or so in both my hips and legs; the pain in my pelvis and loss of sensation therein for the last five-plus years; and the nerve pain and possibly other symptoms in my left foot and left leg that have been attributed to CRPS for the last six years.

    Before I knew I had received the report, I talked to my primary with concerns I have nerve compression, and she asked me what I want her to do. I don’t know, aren’t you the gotdamn doctor?? She had access to that MRI report, also failed to talk with me about it, and has ordered tests to try to figure out my pelvic pain. I know there are things I can be doing to help mitigate my lower back and limb pain but I don’t know what they are, and even if I call the PT I was seeing before, she still can’t help me cuz there’s not a doctor that’s said specifically what’s going on. I still don’t know what’s going on with my head/neck/upper torso pain, GI problems, fatigue, facial tingling/numbness, arm weakness, and cognitive problems.

    I’ve got this calm, welding flame kind of anger but internally it’s

    The only good piece of finding out was being in a video call with Finn. He was and is supportive and empathetic, and googled the things with me after I regained enough awareness to tell him what the report said. He said he’ll support me in any way he can in getting through it.

    This is part me venting, and part me documenting this bullshit. I need to take screenshots of the phone calls, and I’m so glad I saved the message the neurology clinic left on a damn weekend morning when I couldn’t call back.

  • It’s been a while

    And now I have that friggin Staind song in my head, thanks brain (″･ิ_･ิ)っ

    since I put anything here. Life intervened and I stopped posting, then I suppose it intervened again and here I am.

    • Two angry and confused patient portal emails sent to the neurologist who found bulging discs and other stuff I didn’t fully understand in my lumbar spine a few months ago and didn’t tell me. I found out from an NP 2 days ago. Also maybe rejected the concept that the documented 20+ year old syrinx in my cervical spine is perhaps causing some part of my problems??
    • One plan to find a new GP cuz she didn’t tell me about the bulging discs & whatnot either. She poorly handled telling me about growths in my thyroid. She’s not terribly proactive about giving me referrals or figuring out what to test for. She and I don’t vibe as well as I’d like. She’s the first GP I found after getting sick who understands me, believes there’s something wrong, and believes that I know my body and what tends to work best for it. Buuut, I’ve come to realise that those things are basic expectations and I need more than that
    • One current referral to a different neurology clinic
    • Some really, really high hopes that this doctor/clinic won’t start the Carousel of Medical Professional Bullshit (CMPB) when I present my extensive symptoms and suggest I might have spinal instability. Since, you know, there’s images of problems in my spinal cord, and thus far my symptoms can’t be otherwise explained
    • One partner I’m amazingly lucky to have who believes he’s lucky to have me (which is true, cuz I’m fabulous), henceforth known as Finn, and/or 7,894,531 other probably cutesey names
    • One shawl knitting project I’m so close to finishing and I’m really excited! I just realised, pics or it didn’t happen
    • One plan to get all The Witcher novels, and have 4 so far. Also I’m friggin excited for series 2!!!
    • One vague plan to turn this blogtatiousness into writing, drawing, and painting more often

    Symptom Gardening

    1. Bullet points are easier to write today cuz holy brain fog Batman, even with adderall & food
    2. Insomnia last night til around 4 am, part from medical anxiety and probably part period insomnia
    3. Pain in my shoulder woke me up around 6 AM & made me cry it was so bad
      1. Did some googling and figured it might be some pinched tissue nonsense. Found an old tube of Bengay and it dispensed way too gotdamn much. The smell and the feeling let me go back to sleep so it maaaaybe wasn’t too much
      2. Is still sore and tight at 230 pm but it’s not bawling my face off level
    4. I realised that putting my body into good posture – torso upright, shoulders back – causes my upper abdominal pain and it is not just on movement and standing. It may be causing back pain? My back does get sore if I stand for too long but I kinda thought it was from not being able to work out and stretch enough. It’s hard to tell what’s actually in pain when I have constant body aches and fatigue. Idk, I’m on my period and everything in my body is bitching about its existence as well
    5. Slight tingling in my lips, tongue, and jaw. Feels like I ate some Anbesol
    The project! My version of the Colour Affection shawl, pattern by Veera Välimäki

  • Cheers!

    I ripped out this sock at least seven times and it still turned out wrong.

    But, I knitted on and I’m a couple inches from being done. I don’t know if I will keep them since I know actual Vikings fans who will appreciate the colours. Maybe I could send the eventual pair to my aunt in Wisconsin who loves to perpetuate the Vikings-Packers feud with her husband.

    Since my doctors won’t give me any reasonable amount of pain medication, red wine is a swell, very short term stopgap. I don’t recommend it after hazelnut ice cream though. It’s pretty much the opposite of the recommended meat or spicy food, and it’s a bad, bad combination of flavours. Waiting a bit, however, makes everything in life a splendid combination of black cherry, plum, and raspberry flavours. Cheers to liquor stores!

  • Perfect Side Eye

    There’s a weird lump of bone on my toe joint that has to have been on scans, even if it was small, unless it rose up like a magical weed after the scans were completed. Wait, if a certain magical weed were legal for chronic pain I might be less bitter about medical professionals stringing me along. Ba dum tiss. 

    I have all the symptoms of Hallux Rigidus now, which is basically arthritis. Except I’m crazy and my pain has nothing to do with what’s in my foot, but the nerves in my back. Right. Picture a perfect side eye and you’ll come a quarterway to how I feel about this. 

    My evaluation appointment for the implant isn’t for a month. Am I really supposed to wait that long? Then again, if I let it worsen some more they’ll pay more attention. What self-approving medical professional wants to treat a smallish problem? 

    I’m gonna look crazy if I go see Dr S again, or any of the other people I’ve seen about this, for that matter. Maybe I should go see my primary, and ask her what to do. I want to for the constant fatigue, anyways, and see if maybe I get a different response than “Walk around more.”

    Tomorrow I have an appointment with somebody from an organization that helps disabled people get jobs, because unrelenting pain isn’t a disability. I can’t do anything distracting like read, knit, or write but for somewhere between a few and twenty minutes, but I can totally show up for people to pay me to be able to concentrate. 

  • Rough Ruff

    Well now, how’s about a bad day?

    Last week’s MRI apparently was absent of any suggestion of problems. Dr S doesn’t want to do surgery for fear of making my pain worse. After delivering the news he thought I was looking at him like I hated him, but I was trying to wait until he left the room to cry my buckets of hysterical grief tears. I am terrified of surgery but I have faith in it, probably more than is due. 

    He’s referred me back to the so far useless pain clinic for a spinal cord stimulator, which is an implant into my nerves either in my back or somewhere on the way to my foot to shock my nervous system when it tries to deliver pain signals. I described it as a pacemaker for nerves to my friend Horseradish Whisperer, but I just realised it’s a bark collar. This is the singular instance in which I want my independence to be muzzled. 

    If I’m approved for this implant it better work. Except, I’m confused how it will work while the nerve blocks didn’t. These guinea pig treatment strategies are way past the borders of offensive. Medical communities truly don’t know much about the human body. 

  • Bring Your Own Hand Tool

    The MRI with contrast injected into my toe joint was today. I took an entire gram of Clonazepam, and found out trying to preempt anxiety inducing situations doesn’t work. I ended up with a mental status of “Hey man, everthins alright,” and a physical status of “EEEEEEEEE! TERROR! STOMACH TWIST UP NOW!!” It was completely bewildering. 

    I cursed and giggled hysterically during the injection, and came close to crying hysterically after. The doctor said it was a very thin needle, but it felt like he used a screwdriver then set the mess on fire. Lying completely still with my hand tool foot in an immobiliser for the 30 minutes scan was…well I had to try very, very hard not to get hysterical. 

    Coming down from it now, I realise the Clonazepam probably just delayed the inevitable. I guess that’s good, in that they got the scan. But now, on this beautiful day, I have this very strong urge to run down the street screaming. 

  • Another mid night nervous breakdown

    What even is life if one doesn’t have mobility, range of motion, or the energy to deal with the lack? 

    I’m a hyper person. Not moving around gives me anxiety. Not being able to move around – let’s just say these days the anxiety cradles a nice bit of impotent rage. 

    Somehow I’m supposed to [insert chronic pain/injury/illness cheerleader axiom]. I think those sayings come from people who

    1. Are not in chronic pain
    2. Have never had to deal with chronic pain
    3. Have forgotten what their chronic pain situation was like and now feel entitled to tell people how to live

    or any other variety of reasons I don’t care about thinking of anymore. 

    I’m tired. I want this to be over. I want to have a life again. I command thee to commence the patching up sequence, Universe. For an injury that was supposed to heal in six to eight weeks, forty weeks is way overdue.