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Friday Update #45: Cascade
🕑 Added 2024-10-01 08:52:45 +0000 UTC
I've gotten a bit back into Magic: The Gathering. This is digitally on a free client, of course, as I'm being financially responsible by not being stupid enough to waste money on cardboard or virtual cardboard, especially when the game seems to be in such a dire state and Wizards of the Coast seem to be so greedy.
Anyways, I love this little bugger and his silly sliver slot machine, even if he really does just turn every game into gamblecore and I don't let other people have turns because I'm doing so much bullshit (which I've realized is a typical theme with my decks), and even if I don't have a good win percentage with this exact deck, I'm having fun.
My life in the past month and a half... has been the opposite. I keep taking L after L due to bullshit outside of my control being done to me, and I am far from having fun. Maybe this is what playing against me feels like?
Let me break it down, starting with that "stressful update" about my corticobasal syndrome I mentioned the last time I checked in (God, has it really been over three weeks since I've done that? Sorry about that, but it's been fucked over here.)
Blame the Brain
As I explained in the explanation why there was an unacceptable 7-month delay between updates, my prognosis is not good. It's 5 years, according to the doctor I see most frequently about it, a more generalized neurologist at the Emory Brain Health Center, and to say I didn't take the bad news well would be an understatement.
This doctor might be more generalized, but that is actually helpful in my case as it is a weird beast, so her wider-ranging knowledge of neurology has been helpful in painting the wider picture of my neurological health; besides, there's a limit to how many doctors in the world even specialize in this rare Parkinsonism tauopathy.
Even those more specialized doctors only have about coin flip odds of accurately diagnosing corticobasal syndrome (the diagnosable clinical condition) or corticobasal degeneration (the pathological postmortem observation). CBS has just a bit over 50% diagnostic accuracy (meaning that only 5 patients out of 10 diagnosed with CBS will show CBD in autopsy), but it's even worse from the other side, as from looking at brains in a brain bank with CBD, only 40% had been diagnosed with CBS when they were alive.
These are both shockingly low percentages, but one thing to keep in mind that CBS is a diagnosis of exclusion only made after all other more likely diagnoses have been exhausted. It's also an "umbrella term" as its diagnostic criteria are rather vague.
In more generalized speech since none of y'all are likely doctors so more precise terms are meaningless, to be diagnosed with CBS, you need to asymmetrically display (as in, not on both sides of the body) at least need 2 of these 3 symptoms:
Muscle stiffness or "slowness" of response (it's more broad than this, but I'm trying to generalize this).
Sudden and brief episodes of involuntary twitching or jerking of muscles.
More sustained episodes of involuntary contractions of muscles.
I've got the 2nd and 3rd of these, but you also need to display at least 2 of these 3 symptoms:
Very much generalizing what apraxia is, "knowing what to say or do, but your mouth or muscles don't move when or how you tell them to." It's a broad set of individual symptoms that could actually apply anywhere on the body, but the most common are associated with the mouth and speech, such as saying the incorrect word, having difficulty saying certain words, or issues with properly moving your vocal hardware (lips, tongue, jaw, and diaphragm).
Cortical sensory deficit, which can mean your affected limbs might be numb or not feel expected sensations, but it can also be more complex with issues such as difficulty with reading, incorrect judgments of distance, warped perception of time, and even remembering what people look like.
Alien limb syndrome. This is the only one of these symptoms which is so distinctly associated with CBS that it's a "smoking gun" for making the diagnosis, but this typically involves one of your limbs acting independently of its own accord (often without the person noticing). A decent example is one hand buttoning up a shirt only for the "alien" hand to unbutton it later, and either being surprised to find the shirt unbuttoned later or not being able to stop the rouge hand unless the hand in control grabs the other hand's wrist and physically keeps it away. Yes, this happens. It's rare, but hey, I'm a living testament to how weird brains can get.
I've got the 1st (speech impediment, grossly incorrect inputs in a video game beyond "my thumb slipped" or post-hoc saltiness like blaming the controller), 2nd (numb right arm, possibly worsening dyslexia, aphasia (language comprehension) episodes, fucked depth perception, erratic perception of time), and kind of the 3rd, as my perception of my right arm (my affected limb) goes haywire when I'm not directly observing it (it sometimes feels like it's across the room or inside of my torso), but this might just be an extreme example of sensory issues as my doctors don't agree if "not knowing what my arm is doing" can be generalized like that.
There are some conditions that change the diagnosis from "probable" to "possible," like the symptoms displaying symmetrically, but I think after almost ten years of being diagnosed with "some form of Parkinsonism," and finding nothing that fit better than CBS in that time, I think a "probable" diagnosis is underselling the likelihood that I have it.
Still, it is wild to me that there's even a chance that the disease that I've been living in terror of for so long and which I let define me as a person might not be what my doctors and I think it is. The problem is that a lot of Parkinsonism ("Parkinson's plus" syndromes) display similar symptoms. Outside of the asymmetry of symptoms and alien limb syndrome (neither of which are guaranteed to be present), there's nothing that makes CBS stand out besides its rarity, which leads to it being difficult to diagnose correctly.
So, being the youngest person to ever be diagnosed with CBS by over at a decade has drawn the medical interest of the specialist of the specialists of neurology. But it's not just the age of my CBS diagnosis that draws interest (which has contributed to me not dying nearly as fast as the vast majority of CBS patients, as age plays a huge factor in the progression of a neurodegenerative disease), it's the shifting of my symptoms rather than them just getting worse across the board as well as new symptoms appearing.
I used to feel pain in my right arm and shoulder, then the area became numb, and now it's back to being in pain. I used to have a lot more stiffness in the muscles of my right shoulder to my right hand, but that's barely present now (almost entirely in my right ring finger and pinkie rather than my wrist down) and I instead display a lot more jerking and twitching than I used to. The degree and presentation of my speech impediment has varied over time (but admittedly, this could be overlapping with psychological issues, and I have those in spades).
There is something about the physical changes in my left amygdala (if you didn't know, each hemisphere of the brain controls the opposite side of the body) brought about from the buildup of tau there (that's the big part of tauopathies: a protein that is supposed to be drained regularly builds up and causes neuron death, likely by destroying their myelin sheaths) and the shrinking of its white matter that has caused those symptoms to shift over time, or maybe it's something else, and the feminizing HRT is clearly a factor as not only did starting it improve my symptoms, each attempt to get off of it made those symptoms much worse than the used to be. Again, I'm surprised this reckless hail Mary not only did anything, but that it worked phenomenally (minus the, uh, "issues" that arise from being stuck on feminizing HRT when I'm a genderfluid person).
When people say they're interested in "picking [apart] your brain," they usually mean that in the metaphorical sense of wanting to know how you tick or learning from you by asking questions, but in my case, it's literal. I've had numerous doctors interested in not just closely following my case but leading the treatment of it, but a lot of that interest waned because I did so much reckless shit (often against the doctor's order) to try and manage the CBS, such as adjusting the timing and dose of my meds to optimize their results regardless of what the prescription was or advocating for so many changes in my meds (to be fair, this is something my doctors did as well because CBS is so hard to treat the symptoms of). I was even more of an idiot at the start of my treatment because I didn't understand what publishing my case involved (thinking it was a lot more invasive than it actually way) and declining permission to publish, which made a lot of the doctors leave. I've since realized my dumb as hell mistake (God, I want to kick 24-year-old me's ass for that) and given that permission to publish, but all of the DIY treatment I mentioned didn't help that interest return, but it was starting HRT (let alone DIY HRT as it was in the start) without properly informing my doctors of what I was doing was the last straw for a number of them. After all, you can't exactly publish the fascinating case of CaptainCaption's CBS and how you've treated it in a medical journal when your patient wantonly ignores instructions and goes off to do their own wild thing, can you?
I don't claim to have been smart with any of this. When it comes to my health, and my CBS in particular, I am paranoid, I am scared, I am irrational, and I am delusional enough to think I can know more than my doctors about it than they do. Of course, in the moment, I think I am doing reasonable actions I've carefully thought out, but that's almost never been the case. The backlash from starting the HRT was hopefully the wake-up call I've needed, because enough doctors dropped my case that I'm down to just two: the generalized neurologist from the Emory Brain Health Center I've mentioned, and a neurologist from Mayo Clinic in Jacksonville, FL who is very specialized in movement disorders, particularly Parkinsonism and related disorders.
I have to be careful not to share too much about the people I write about, but in this case, I desperately want to, as he has accolade after accolade, he's published hundreds of papers, and he's been a leading researcher in the field by making key discoveries about the causes of Parkinsonism as it relates to the mutation of several genes. Suffice it to say, this doctor is not just good, not just great, but outstanding.
All his continued care cost me was signing over the rights of my brain to his facility's brain bank in a rather grim promissory note and likely the sole right to publish my case (it's been a while since I looked at the exact terms of this, and my big box of my medical documents got lost or thrown out during the move out of my parents' abusive household).
I see him about once a year, usually in summer (I think it's because it's a window he can spare as he can be less focused on academia or overseeing residencies during summer?). This year, I saw him in the middle of August, and my anxiety was through the fucking roof in the weeks prior. A possible medication change was discussed in the call beforehand, and with it came a hope that I could get off of this fucking HRT without my brain collapsing.
Sure, realizing I am genderfluid, that I have a sizeable feminine component to my identity, and that I am bisexual has been great and all, but can you honestly look at these Patreon posts, the in-VN Author's Notes, and my Discord messages in re:Dreamer's server, and then say that getting on HRT was the right move for me after all the anguish it has either directly or indirectly caused over the last 18 months? It clearly, emphatically, and overwhelmingly obvious that it was not, and I am writing this when I'm on my feminine side. My masculine side feels like he's dying, and he hates it.
But I made that Faustian bargain so long ago that even if I could detransition (or at the very least, get off of the HRT), the "damage" has been done. This is not the time or place to placate the fears that some of you might have that I am nothing more than an internally transphobic truescum pushing detransitioner acceptance therapy or whatever the fuck the people who shouted at me for saying that being stuck on HRT almost killed me in a somewhat insensitive way, but it's my body and life, not yours. Fem me is scared shitless of making any kind of social transition, and guy me is so horrified by what has been happening to that body that it's sometimes made me suicidal. Besides, I think by this point I've made it clear that I'm not going to have a transphobic Joker transformation because I'll stupidly think that because some trans women were assholes to me in unforgivable ways that the whole demographic is like that, and if that hasn't been demonstrated to you, and you don't like my near-militant "gender neutrality" style of being an ally, you're likely not going to be convinced I am not going to become transphobic or be able to "forgive" me even if I start following your idealized playbook.
I'm genderfluid, I'm stuck on HRT, and my "great" transition results have backfired spectacularly because I'm already past the threshold of safe binding (and genderfluid, in case you forgot). I thought I made my peace with this sad life, but upon hearing even the hint that I could still uncurl the monkey's paw (I'm not delusional enough to think that I'm going to be able to successfully put the lid on Pandora's box and pretend I'm not genderfluid), I started to... realize how much I desperately wanted that... or did I? And which "I"s does that statement refer to?
I knew that I was putting the cart before the horse to even start asking myself if I should get off HRT, but I couldn't stop thinking about it (severe OCD, remember?). What would I do if I got off it? Who would I be when I got off it? How realistic would it be to pursue surgery such as a breast reduction (a "mastectomy" removes the entire tissue, including the nipple, so that's generally avoided, even in trans men)? Is getting off it even the right choice? Am I giving up on that feminine side of me? Were all of those strides or revelations about myself and enjoying myself as a woman nothing more than delusions?
I'm already nervous as hell when I enter a doctor's office for the CBS, but this was the second most nervous I've ever been before or during a medical appointment (it's kind of hard to beat getting diagnosed with Parkinson's disease on your 21st birthday and your doctor utterly dropping the ball on patient care and information providing to the point of making me think I'd be dead in a decade). I drove up to the Emory facility on the verge of throwing up the entire time (when you have a case this interesting, the doctor comes to you). I was an utter wreck of anxiety and raw nerves.
I want you to keep that extreme anxiety and two other things in mind:
I've spent almost ten years trying to grasp the specifics of Parkinsonism and tauopathies (CBS is both and can loosely be described as "Alzheimer's pretending to be Parkinson's disease on half the body"). I've tried to make myself as informed as possible to help my care as much as possible so that I actually understand what is going on, but unlike what I sometimes delude myself into believing, I am far from a knowledgeable source on these topics. I can generally follow along with what a doctor is telling me, I can ask some better-informed questions, but that's it. In short, I'm not a doctor, let alone a doctor as good as the one I was about to see.
This doctor has by far the thickest Polish accent I have ever heard, and it's not just me, as my best friend (who has Polish friends) didn't quite catch everything he was saying on a video of an online interview of his I showed. I likely have auditory processing issues as thick accents are in general hard for me to parse (and even in everyday English I sometimes have to ask a person to repeat what they've said up to 4 times to understand a word; this seems to have gotten worse over the years, so it might be related to my CBS). Making my ability to not just understand but even hear was that the last of the three medical imaging devices I went through was a CT scan, and that machine (that looks like a flat bed on a slider with a huge doughnut at one end) is super loud, and I had my head stuck in the middle of that for what was probably 45 minutes. I was given some ear protection, but my ears were ringing for a long time after.
So, as usual with this doctor, I had three scans:
An MRI, which you can not have metal near because it uses an incredibly powerful electromagnet to scan. This is were I had to give up my watch and phone, neither of which I got back until the end of the day, so my sense of time for the visit was pretty warped. Sometimes things felt very brief, sometimes everything felt like it was dragging on for hours.
A MEG. You likely haven't heard of this one, but it looks like a throne and has a giant stationary "helmet" on it that you stick your head into (imagine it making the occupant look like a mix of Doctor Xavier and MODOK). This one is designed to measure brain activity on a precise timeline, and I was asked to perform a few verbal exercises, watch videos, read, do basic math, and do some physical tasks (at my insistence, I added writing (as if I were coding for Ren'Py) to this list).
The mentioned CT. The contrast dye they give me always makes my mouth taste like salty metal, but they do that to increase the accuracy of the scans this machine gives, and given the tissue they're looking at (especially degraded parts of my brain), it's necessary.
<Author's Note: Hey, so when looking this post over before publishing it, I realized I'm a total dumbass. The MRI is the loud doughnut, and the quick spinning X-ray arm is the CT. I almost always get both for my brain scans as both sets of data matter for brain structure, but I really should've known better, especially after typing this much and going through so many brain scans in my life. I'm going to chalk up getting the device names wrong to me being a nervous mess, being asked to surrender my phone and watch so early into the day (making me think it was the MRI I was headed to first), and the CT results being viewed after the MRI ones. The mistake is being left in as I think me confusing something so basic about my treatment this much that my memory got a bit warped is demonstrative of how bad I was doing on that visit.>
All of this took place over what I think was 2 hours, and my doctor was consulting with the attending radiologist the entire time, so I only had to wait 20 minutes for him to meet me in an empty exam room.
I do not like looking at scans of my brain. It not only weirds me out that technology can see this part of my body I can't see yet consider the root of me being "me," it's uncomfortable and even terrifying to see that ever-growing cavity in my brain and knowing this is almost certainly going to be the thing that leads to the thing that kills me (by far the most likely two for CBS patients pneumonia from being unable to swallow properly as the apraxia worsens, or a fall injury caused by a lack of muscular coordination). I've spent the better part of a decade keeping thorough medical records of my neurology (which is why I am fucking furious that it either got lost in the move or my parents threw it out) as I've sometime had to self-advocate for getting proper CBS treatment by showing that I don't have more basic Parkinson's disease and it helps me understand treatment plans better, but one type of highly-relevant document noticeably absent from that storage file box is my medical imaging scans, as I used to just stare and stare at the dark spots for hours and give myself panic attacks over them. In many ways, I am my own worst enemy.
Anyways, my ears were ringing, my mouth tasted like salty metal, I was disorientated, I was extremely anxious, I was downright scared of this part of the visit, and my doctor's accent is very thick. I tried to write down the events of the conversation soon after the appointment, but even with only a few hours of delay, my memory of the exact words said was fuzzy (if the words I heard were even correct in the first place). As much as it bothers me because I OCD and used to do journalism-adjacent stuff for my local paper (such as ghostwriting an article from time to time), I'm going to paraphrase the points of that discussion about my health instead of trying to directly quote it.
We started with reviewing the MRI. It was rather brief as it isn't as helpful as the other scans despite it being the most sensitive scanning method, a CT provides better contrast of the edges of soft tissue, which is the more relevant information for the structure of the brain. Using the MRI image, he pointed out the shadows of my left hemisphere's shrinkage, then almost right after told me not to worry about it (I was still very much worrying about it) because he brought out my CT next and showed that the shadows weren't as present on that. We then talked a bit about the insights of that scan.
Despite my left amygdala being about 60% of the size it should be, it had light up almost as much as my right one during the MEG activities (he said that me writing wasn't brighter than the other activities because I specifically asked about that). This suggest that there's been less neuron death than expected. He told me how Alzheimer patients who were artists sometimes have their art ability be one of the last things to go. There was a similar example with Parkinsonism specifically that I don't remember beyond it being related to sports of some kind. He postulated that because my job (making this VN) involves so much use of language, that my language skills haven't atrophied much, which struck me as odd, not for the idea, but for the areas of my brain involved.
So, I realized when writing this that most people don't know much about the structure of the human brain, so I might need to explain what the hell an "amygdala" is.
The amygdala is the part of the human brain relevant to decision-making, processing emotions in the present, and linking emotions to specific memories as they convert to long-term memories. In my view, it's likely purpose is as the threat-assessment tool of the human brain as it links feelings of fear, anxiety, and aggression to memories of things and events in that person's environment to increase their chance of survival by avoiding those threats, but that's admittedly conjecture. There are theories that it could be relevant for sexual orientation, but those rely heavily on correlation to the sizes on each hemisphere and don't make particularly convincing arguments for it being involved in the causation; also, I'm not particularly warm on the idea of being able to determine a person's sexual orientation merely with a brain structure, as that could not only be used against homosexual people as a weapon by bad actors, I've seen a small number of trans woman try to "prove" they're more valid as a trans women with biological evidence, like the putamen being enlarged on trans women (it's again correlated but in my view not the causation). That gets into murky territory of bioessentialism which is a very dangerous slope to point out when transphobia is in vogue right now and could even be used by trans women to exclude other trans women who don't fit the mold (much like how some trans women with dysphoria look down on trans women without dysphoria as "tourists" or "doing it as a sex thing" (yes, I've seen this in the wild; it's kind of a very shitty thing to say)).
Anyways, the amygdala doesn't have much to do with language at all. Maybe the decision-making part getting more activity as a part of my work could explain some of my left amygdala's resiliency, but I'd be surprised if it was having as much of an impact as my doctor was suggesting. But I'm not a doctor, and he is a very good one.
God, it's so fucking frustrating that I went into this extremely important review with an outstanding doctor I see once a year in the disoriented state that I did. I feel like all those factors I mentioned contributed to me missing more than a few key insights about my health.
The conversation then shifted to what my exact diagnosis was, as I thought in the earlier phone call that he suspected a more traditional but still atypical Parkinson's disease, but nope, I'm not able to parse his accent over the phone when calm any better than I could in-person while a mess. I think I jumped to that conclusion as he'd mentioned me not having corticobasal degeneration a while back, and I used to (wrongly) think that CBS and CBD were interchangeable (they're not) even though a lot of website equate the terms. I didn't want to focus on something as awkward as me not hearing him correctly earlier and making a bunch of wrong assumptions, but I then turned to the elephant in the room, my prognosis, an asked about it.
Bluntly, I just said, "So, do you agree with <My primary general neurologist> that it's [the prognosis] is five years?" He very tersely said, "She should not have said that," and that was understood clear as day. He didn't want to give a definitive length of time or even a range of timescales, even as I really tried to press him for it, so I was left unsure if he meant that I shouldn't been told that prognosis because it was incorrect (putting the prognosis up in the air once again) or if it was correct but for some reason, maybe my history of playing it fast and loose with my treatment when I don't feel like anything is working, I shouldn't have been told. I felt like it was a choice between a doctor I saw a lot more who knew my case better but was ultimately not a specialist, or the specialist doctor I rarely saw but who always seemed to provide at least some helpful guidance for my treatment when he did.
Eventually, I did get him to say "not five years" but he also said "too little to tell" because that prognosis could change a lot depending on many factors, such as what direction my tau (and shrinkage) spreads in: up, down, outwards, inwards (CBS means that there's a limit to how much of that tau spread and neuron decay can go inwards as it almost certainty won't go more toward the other side of the brain), forward, and/or back, but I ended the appointment with two new prescriptions (and a short talk about a new drug in FDA trials specifically designed to prevent the damage from tau buildup): Xadago, a Mao-B inhibitor (like the selegiline I took recently that made my blood pressure dangerously high); and benztropine, from a class of drug I somehow don't think I've been on before called anticholinergics, intended to balance brain chemicals better to help with tremors and muscle stiffness, but it's rarely used nowadays as it can cause very bad memory issues in older patients (my doctor told me I was young enough to not have to worry much about it (I was still very much worrying about it)). These really seemed to be my last hopes to get off of HRT, but I'll get into that after explaining why my health is so up in the air.
This is the best free 3D model for the human brain I've found online that works in-browser, so if you want to follow along and really pick my brain, you can. The top slider on the right controls the cross-section of the brain, and the buttons below control which cross-section is used. The amygdala is the almond-shaped area (the word is actually Greek for "almond") roughly in the center, but just use the search bar to the left if you don't know where to look.
Up is the prefrontal cortex, but specifically, Broca's area. This is a major language center of the brain, particularly with comprehending language and speech. Given my aphasia episodes that make me pretty much illiterate and my speech impediment, I suspect there's already a tau buildup here, but my doctor didn't point it out specifically. The brain is a lot more plastic than people realize, so there's a chance the issues with my Broca's area are because it's having to work harder to pick up the slack from my failing amygdala.
Down is the hippocampus and other structures related to memory. Given that CBS is a tauopathy like Alzheimer's, and the hippocampus is very commonly the first area affected by Alzheimer's, it seem somewhat likely the tau could spread there. That's a pretty bad outcome, but I'll likely live a bit longer if that's the next area. Memory loss is one of my biggest fears, so this is me coping through morbid humor. Weird how that blends with my fear of being forgot, I guess?
Outwards is a part of the basal ganglia that controls inhibitions (specifically, restraining them) and learning. I think it's supposed to play a role in more traditional Parkinson's disease, but I don't know if that's a solid link. It also takes processed memories from the amygdala for reinforcement before passing them to the hippocampus. Honestly, a lot of this area of the brain just bounces around stimuli and memories by processing them before deciding to commit them to long-term memory or not. It goes way over my head.
Inwards is an optic tract that sends information from the eyes to the visual cortex for processing (and the brain stem for reactions). I'm already feeling like I'm having trouble with my vision in ways not related to worsening eyesight. Flat surfaces sometimes seem to warp and curve on me in unexpected ways. Right now, I am typing this on my flat-screen monitor, but I sometimes see it as a curved monitor. I don't know, maybe this is just my wonky depth perception. I also have mild schizoaffective disorder (depressive type) and hallucinations may be a factor.
Forward is part of the temporal lobe; specifically, some of the audio cortex, but the key area deals with conceptual memory (as separate from personal "learned" memory). You might call it the center of imagination, but I think that's giving it too much credit. While making sure this data is as accurate as I can get it, I found out that it can also be an area that, when damaged, can lead to fearlessness, hypersexuality, and hyperorality (like constantly licking the inside of your mouth or feeling a compulsion to put something in your mouth and chew it). I, uh, am currently chewing a plastic toothpick, and I used to chew gum constantly (before I started HRT and realized it probably wasn't a great idea to keep such a muscular jaw). I thought this was just the OCD, but hey, it might be brain damage instead!
Back is me being dead. There's some of the hippocampus in the way and a structure for episode memory, but any further back hits the lateral ventricles, which are absolutely critical for moving around the cerebrospinal fluid in the brain. Think of this as being the brain's feeding, waste disposal, and layer to protect from shocks. If the tau spreads to it, the tau will likely spread to many other areas of my left hemisphere. If that starts decaying, my entire brain will start to fail. The brain stem (or at least, the areas connecting the brain to the brain stem) are nearby, and I hope I don't have to explain how important the brain stem is for an mammal to even be alive.
I've been sitting here feeling like I'm looking at this macabre six-sided die that decides my fate. None of the sides it can land on are good, but two of them are less bad than the others, which are awful, but one side kills me. There's perhaps data to explain which of these options are more likely, but it's ultimately just guesswork as CBS has very little data on it, especially an atypical case like mine.
I can't explain how scary and stressful it is to feel like I have to led the universe roll dice for me, as I've got awful luck, and I can prove it (besides the obvious example of even having CBS, let alone all this other bullshit in my life)!
That friend I play Magic: The Gathering using Cockatrice. To decide who goes first, we roll a virtual d20. About 2/3 of the time, if not more, I lose, and it's not just me as that friend has pointed it out. I just expect to go last, always having to react instead of setting the tempo.
Anyways, I had to wait a month for those new drugs as I refused to pay almost 10x as much to fill them at the facility I was in when I got them, but my Kroger took a very long time to get in the anticholinergic, and then I had to wait a week because of a rather bad cramps part of my hormonal cycle (as I was advised to be in a more neutral state before I took any of these drugs, which might have been my doctor's way of telling me to not be an idiot).
Yeah, the Xadago straight-up isn't compatible with me. Now that I know what I am looking for with high blood pressure because of the selegiline giving me that, I got a roaring headache, chills, a pounding heart, and dizziness on the first day I took them. Expected, but nevertheless heartbreaking. Maybe if it'd worked, I'd have been able to get off HRT, but it didn't, and even now, I can't confidently tell you what I'd do if that choice was actually put in my hand again.
At least the anticholinergic not only helped a decent bit with my trembling (not the jerking, though), but it cut through a lot of the pain from my arm and hand's rigidity (especially the latter), which was very fortuitous as nothing had been dulling that pain recently.
I'm going to be painfully blunt: the pain in my right shoulder, arm, and hand was so bad for so many weeks in a row that I heavily contemplated suicide just to escape it. I know, I know: selfish, cowardly, a permanent solution to a temporary problem, but I was so convinced that the pain wasn't going to be a "temporary" problem that I'd have to resort to a neural tranquilizer (that could really mess me up and likely would), opiates (which is honestly me just saying goodbye to the world and putting my lights out until I truly die), or killing myself. The only things that kept me alive were not wanting to abandon my cats (God, I love them so much but I'm gonna type even more rambling paragraphs if I start gushing about them), <REDACTED> (I don't have permission to talk about this one), and most strongly of all, the knowledge that dying anywhere but a hospital or hospice facility would deny a brain bank a valuable specimen, and I'm enough of a goody two-shoes that I want to honor that agreement with the doctor I recently saw and I am desperately hoping for even potentially help a hypothetical person who might be going through what I'm going through by giving them answers I am doomed to lack as they can only be found on an autopsy table.
I hate my brain more than you can ever know, and not just because it is "me," or even in a metaphorical sense, but in a very literal sense. That pinkish gray object in my skull with a consistency of what it'd feel like if tofu and Jell-O had a baby has caused me so much anguish, so much pain (both metaphorically and literally), so much anxiety, fear, anger, sadness... it's very hard not to blame my brain as the cause of the single largest and worst thing that has ever happened to me in my life.
But ironically enough, for how much I blame the thing that's going to lead to the thing that kills me, I have to thank it for possibly saving my life.
Hormones
When the fuck am I not bitching about this? Every month, I get at least a week of back pain, chest pain, boob pain, cramps, lower stomach pain, constipation, often feeling like I'm going to shit myself, nausea, moodiness, brain fog, and distracting arousal. I've beaten this point to death: I don't like that this happens to me.
At least the (for lack of a better term) pseudo-estrus spike was fun, even if I looked at my messages with embarrassment and not recognizing myself.
Seriously, what in the actual fuck? Who the fuck is this bitch?! Who hijacked my account and brain?!
Being Genderfluid Sucks a Lot (Especially When Stuck on HRT)
Yeah, the possibility of getting off HRT opened up the doubts and worries and all that shit again. I made a thread on my main Twitter account talking about it, but yeah, it's so goddamned draining. But I've beaten this drum before, and I've beaten it loudly and often. Let's move on.
Antidepressants
I straight-up can't get on SSRIs. They put me to sleep like a Metal Gear Solid tranquilizer dart to the head. My best friend is also like this, and in hindsight, this extreme drowsiness likely explains my I was so goddamned exhausted for much of my life and then suddenly had energy when I got off my SSRIs because they would interfere with a CBS med I was trying and I never got back on them after those meds didn't work out for me.
So, this has heavily limited my options for antidepressants and anti-anxiety medications, and the most promising one, Wellbutrin, isn't doing much, even at a high dose. I've learned from CBS that I've got to be patient while adjusting medications, but it still fucking sucks to be in this back-and-forth wait-and-see limbo.
Oh, I'm Actually Fucked
So, I went to a rather shitty seafood restaurant on Monday night (09/28/2024) because it's right next to where I now live ("Atlanta," as in, "I am close to downtown but can't be more specific as yeah I don't want to paint a target on my back for potentially getting doxxed") and I'd figured I'd try it at least once. While doomscrolling on Twitter as usual when depressed (which is quite a lot now), I came across this tweet. "Hey, someone talking about Parkinson's disease and Alzheimer's?" I naively thought "Both of those are relevant to... oh."
"Oh, this is... really, really bad." I thought as I kept reading. I read more. "Oh, I'm actually fucked."
I don't think my eyes left my phone for more than a few seconds for the entire time I was reading.
I shared it in the re:Dreamer Discord server, a sticker of shock and a hollow, "Ah, uh, neat" being all I said below it.
I think my food came. I barely noticed. I no longer had an appetite.
I started to shake, and no, not the "I have a neurodegenerative disease that acts a lot like Parkinson's disease" shake, but the "Oh, I'm very, very scared" shake. The scale of this was so, so massive.
Two different waiters walked by me in this moderately busy restaurant and asked if I was okay. I don't remember what I said, but I wasn't okay.
I think my heart twisted and broke when I read this. Cerebrolysin was the drug I had talked about with my doctor back in August. It was currently undergoing FDA testing. It would not be undergoing FDA testing for much longer due to this, and I had no way of knowing how long it'd take for trials to start again. "Would I even be alive by then?" I thought with a detached horror. Horror. Yes, that was the emotion I felt.
I finished the article and just stared at my phone, not moving my hand. This wasn't just "really bad." This was apocalyptic. I'd already been stressed about my health, especially when the 10th anniversary of the worst day in my life, the day it all started to go to shit, was on the horizon. In the months after that, I didn't think I'd live this long. I'm still kind of surprised I'm here. It sometimes feels like I'm just waiting to die.
I proceeded to have a panic attack. I didn't touch my food, but I quickly paid my bill. I thought about leaving $50 in cash on the table, far more than the cost of my meal and the 20% tip I always add, and walking out of the restaurant just so that I could go home faster, but I barely decided against it. I waited for my check, I paid my bill, I got in my car, and I drove the mile back to my apartment. I barely remember what I did. I am still surprised I made it back safely.
When I got home, I felt so crushingly hollow and empty. It felt like I'd lost a little piece of my soul, my sense of hope, that I didn't know I had left to lose. I sat down at my computer. I was barely coherent. My thoughts were a chaotic mess but simultaneously quiet. I could tell I was having a panic attack, but I barely felt it. The sadness and despair was far greater than any sense of anxiety my brain could create. I didn't know I could be this numb and empty. It was like my non-stop inner monologue had been silenced for the first time in a very, very long while. Even he/she/they/it didn't have anything to say about this. In all senses, the strings were cut. There was nothing left to do except cry.
I worried a lot of my friends that night, which I understand, as holy shit, I was despondent. All I could do was type out a short "ill be safe" before I went to bed. I wouldn't sleep, but God, being in bed might feel better than sitting in my chair in an almost completely unresponsive state. I think one of my cats had tried to climb onto my desk using my thigh? I'm not sure. I just noticed that my thigh was bleeding in morning. I didn't care to clean the wound.
Of course, sleep didn't work, and I just had an existential crisis because of course this was the time for that. It's kind of dramatic, but doing this in the semi-private #vent channel actually helps me calm down, so I eventually did get to sleep an hour or so later. I remember feeling so relieved I was going to be able to sleep and turn my brain off, but I wouldn't be that way for long.
Uh... I guess content warning for a nightmare scenario involving surgery and a bit of gore?
Christ, I'm not trying to foreshadow my life with a specific detail (a pungent industrial chemical that hurts my head), but I am apparently too good at this for it to stop.
What's so fucked about this is that many, many recent advancements in the research and treatments of Alzheimer's and Parkinson's disease are going to have to be rethought. That is going to take a lot of time. That might not be time I have.
I am not exaggerating when I say that I am confident that this single-handedly set back the field of Alzheimer's and Parkinsonism research by about a decade. The scale of the fraud was simply that massive, because there was just such a wide web of assumptions in later papers through citations and "taking the next step" that were built upon that falsified research. 18,000 papers citing at least 132 of his doctored papers over a period of over two decades is a towering amount of science that is now shown to have a very weak foundation. There are likely many more faked papers, but the sleuths investigating Eliezer Masliah stopped looking at 132 papers as they'd assembled more evidence than they'd ever need to state their case. This means that almost everything derived from this man's research has a heavy shadow of doubt cast upon it.
In particular, I, and many other people with Alzheimer's or Parkinson's disease, are fucked over by the scale of the misappropriation of funds for pharmaceutical trials with doctored results to make sure the data fit the desired result. This means that so many drug trails have to be redone, and that can easily take a year or more. Better drugs that were on the horizon? Nope, we (and the FDA) can't trust that they're better, doing anything at all, or even safe!
This man was a leading researcher in several subfields of Alzheimer's (it's the famous tauopathy, but treatment of it means treatment for all of them) and Parkinson's disease (again, you figure out how to treat more run-of-the-mill Parkinson's disease, you learn how to treat a lot of the Parkinson's plus syndromes) that are directly related to my care. This is awful for everyone with Alzheimer's and Parkinson's disease, but if I can be egotistical enough about the disease I hate, I think the unique intersection of the research in question with what I have in my head means I might be fucked over the most out of any patient.
Honestly, I don't even hate this doctor. I don't think I'm even mad at him. Disappointed, yes, but this was a textbook institutional failure which enabled this to get so catastrophic. Peer review that didn't actually review the work. Likely over a dozen people involved in the falsified data. Zero vetting to give this guy the extremely important position he had in the NIA, which is a very well funded part of the NIH. His important position giving everything he did a huge air of credibility that likely led to his work being checked even less thoroughly His insistence on drug trials that were clearly not more helpful than placebos and which relied on post-hoc data collection. There were so many missed opportunities to check his work over decades that just never happened.
I made the metaphor earlier, but I can't decide if this is more like keystone on an arch breaking or a foundation collapsing. Maybe I'll let masc me take a crack at it later, as he's better with the artsy metaphors than I am. My only real hope is that CBS is tangential enough to not be caught in the rubble too much, but that's... not looking likely.
I have been a depressed and nervous fucking wreck for the past two days. Tonight was the first time I've felt alive since reading that article. This was from two things: my best friend tanking the time to play the entire Halo 2 campaign with me over those two days (on Heroic; Halo 2's legendary is heavily overtuned and I am not giving myself PTSD from Jackal snipers when I am this depressed) (huge thanks by the way, bestie!~); and that circumstances far beyond my control have pushed me into crisis mode to not be dead.
The Air is Cancer
So, Hurricane Helene just rolled through Appalachia, one of the poorest areas in America, and devastated it. People's homes are gone from impossible flooding so far inland. People are dead. Civil services have broken down, especially in Asheville, NC, which has become completely cut off from the rest of the world, almost literally, as all the roads are gone.
All of western North Carolina is fucked, and it's probably going to take a generation to get back to where things were, but Georgia got hit pretty hard too.
Especially in Buckhead, lol.
Look, I do not wish death or suffering on the level that massive storm and flooding would cause, but if you play stupid games, you win stupid prizes. Buckhead is, like, an insanely wealthy part of Atlanta, which is already called The Capitol of the South, and Buckhead The Beverly Hills of the South. The people who live in homes there have more money than almost anyone who would ever read this. But they stupidly spent a lot of their municipal fund, specifically parts dedicated to improvements to aging drainage and sewer systems, to do stupid shit like rezone areas to build luxury condos or prevent the city from upgrading its infrastructure. Buckhead's residents pushed hard for a massive cop training facility a few miles south of them that's being built on a massive floodplain that has proved vital in mitigating past floods.
Seriously, it's called "Cop City." It's a "training facility" for law enforcement nationwide, but in actuality it's a theme park about cops made for cops. ACAB and all that, but just because I have a heavy distrust of cops doesn't mean I hate them. The whole system is fucked, but hey, let's dial this back in.
So, suffice it to say, a lot of Georgia has been in need of emergency services. Resources have been stretched dangerously thin.
And then a fucking chemical plant carrying a fucking massive amount of chlorine gas catches fire, likely not even related the hurricane but because this plant has had 3 other incidents over the last 2 decades. The explosion and fire happened early in the morning last Saturday (09/28/2024).
This is Conyers. GA, the site of the incident. Residents closest to the plant were urged to evacuate. Keep in mind, this is fucking chlorine gas. This isn't quite the mustard gas of WW1, but it will kill you if you stay in it for too long as it will essentially turn the water vapor in your lungs to acid. It's very carcinogenic, and if you've ever been too close to an over-chlorinated pool, you'll know how much it can make your eyes water and your nose burn.
Conyers was evacuated, but residents in a fairly large area around the incident (the furthest distance away being 10 miles) were ordered to shelter-in-place. Do not go outdoor, do not have you AC on, seal all windows and doors, and ride it out.
This is Chamblee, GA as of this morning (09/30/2024). This is about 30 miles away from the incident. Residents are reporting that everything smells like chlorine and that it kind of hurts to breathe.
Okay, evacuation time here too, right?
NOPE!
I got a text last night warning that the EPA was monitoring the air quality for chlorine "and related compounds" but said not to worry as the chemical levels "Are unlikely to cause harm."
Without doxing myself, I live closer to the plant than anyone in Conyers does. The flooded Buckhead is even closer. The area around Hartsfield-Jackson Atlanta International Airport is fairly flooded, and while some flights are disrupted, it's not all of them, and it's the busiest airport in the world on a good day. Lots of travelers. Welcome to Atlanta, don't mind the smell!
So, I took a shower, not realizing how bad this was getting, and then when I got out, everything around me started to smell like fucking chlorine gas... but also this weird salty burned vinegar smell.
C;² is how chlorine gas naturally forms (it's in the very reactive halogen group of the periodic table, which almost always wants to reach a stable state by bonding with itself). HCHO is formaldehyde. It is easily formed from combustion of oxygen and chlorine, which, as you'll recall, was coming from a place that was on fire (they put the fire out, then it came back, and then they put it out again).
What I smelled wasn't just chlorine, but formaldehyde, a heavily carcinogenic substance. That was in the air. If you can smell it, you are beyond the safe levels of 0.5 mg/m³.
This was a measurement of the formaldehyde concentration in the air taken today from Marietta, GA, which is about twice as far away from the plant as I am. That is 150 mg/m³. 150 is quite a lot higher than 0.5, and that concentration is likely even higher for me.
<Author's Note: So, this man was actually falsifying the data, but even though I had smelled formaldehyde and did not know what it smelled like, I was still able to smell something wrong in the air that matches what it smells like, and this was separate from the chlorine gas. My eyes are still watering this morning when I am away from the air purifier, several residents of Atlanta are reporting the smell and feeling sick, and there's a water boil advisory in affect. This is still really bad.>
The entire city of Atlanta should be evacuated, full-stop, and if it weren't for my cats, having no place to go, and thinking I'd get more of this stuff in my lungs in the attempt to flee the city than I would hunkering down, I'd be gone. There's been no word from the government. The EPA has consistently commented that the levels are safe despite them burning my eyes and a friend who lives at least twice as far from the BioLab fire than I do saying he smelled chlorine. I genuinely don't think they are trying to monitor the formaldehyde levels, but knowing Atlanta, they might just have decided to not alert people to evacuate because resources are stretched thin enough already and it's the less "immediate" worry.
The first thing I did upon noticing how bad this was look up the precautions I needed to take. While rushing to turn off my AC and seal my windows, I briefly stepped outside for maybe all of ten seconds to put a wet towel on the outside patio door since it's pretty loose and this was a very bad situation. Within about 2 seconds, my eyes started to water and burn, my nose felt like it was on fire, and I smelled chlorine and formaldehyde.
The second thing I did was contact a friend who is a professional chemist (speedrunning was kind of neat in that it gave me a friend group from pretty much every field of STEM I can quickly contact). I asked him, pointing to the above tweet, "on a scale of one to ten, how bad is this?"
This was his response. This is from a medical pain chart. This is the highest level.
The third thing I did once I realized that yes, this was that bad, was contact my sister (who I was supposed to be visiting this afternoon, she lives less than 10 minutes west of me), telling her under no uncertain terms that she needed to get indoors, she should probably take the stray cats she cares for inside, she needs to turn off her air conditioning, and she needs to find any air purifier she can and get near it, and if she has anything better than a N95 mask, that she needs to put it on. She responded "Come over anyway! We're all stuck with it." I implored her, hell, I begged her to get to safety, and tried to explain how carcinogenic this stuff was. I don't think she quite understood as she said "Okay, I'll wave as I drive past you apartment.❤️" My best friend (who is a nerd in STEM) said, in regard to this, "reiterate the air is cancer."
Right now, I am sitting in front of my computer with an air purifier (thank God I had one!) on full power and blasting into my face. Hopefully the fresh activated charcoal layer and HEPA filter is removing enough of this shit out the air to not cause long-term health issues (I already have asthma and am particularly vulnerable to what this would do to me). This is currently the only spot of the apartment that doesn't smell of chlorine and formaldehyde, and this is after I've taken the proper precautions. Merely getting dinner for myself made my eyes burn after 2 minutes.
I am worried sick about my cats, as they're breathing this shit in and are only staying so close to the loud air purifier. I have no laundry basket or anything to hold them in place besides vet crates from when they were kittens. I live in a loft-style apartment with no real doors besides a very tiny storage closet and the bathroom. The bathroom door doesn't latch (meaning the cats can open it) and there's no ventilation in there (the fans were broken from the day I moved in and maintenance has never come by to fix it despite repeated requests dating back at least 3 months). I am really, really hoping they'll sleep next to me tonight, not only because I love my boys (said in the tone of Mister Boss from Smiling Friends), but because my bed might be the only safe place in the apartments once I move the air purifier up there. I've grimly thought more than once that I probably don't need to worry about cancer killing me, but the cats are another story.
I guess the lesson in all that, is that when it rains, it pours, and then all the roads break, chlorine gas leaks into the air, and your city doesn't come to help you. That's so typical of Atlanta, honestly. Maybe this will pan out to a huge and well-deserved class-action lawsuit, but if I've learned anything in the past few months, it's that my life is a slot machine that doesn't pay out very often.
Christ, I was typing for 8 hours straight. I had a lot to get out (hopefully I didn't forget anything), but my hands hurt and I'm going the fuck to bed.
Stay safe, everyone!
Comments
Jinx
i want the game, it brought me through some tuff spots.
Dream Team
PayPal? But, uh, honestly, if you're having a hard time completing a payment, maybe pass over this one? I don't exactly need the extra money.
Jinx
for the past 5 days i have tried to use a visa gift card to work so i can be a 20 Doller patron for re dreamer but i get that it can't be processed so what should i do?
Turnty
Oh believe you me, I have no misapprehension about how fucked the situation is, especially for those with respiratory conditions. I was just hoping to allay some of the fear about the carcinogenic aspect that may have been stoked by misinformation. Sorry if I came off condescending or callous.
Dream Team
I have asthma, so I would be more effected by these chemicals than most (both in sensitivity and overall damage), but others around me have reported everything still smelling like a pool this morning and there's a boil advisory for part of the city.
Turnty
Maybe overstate isn't the right word. If you can smell it, it's still definitely dangerous. Anyone else listening in the Atlanta area, don't be stupid and take this as permission to frolic outside. Just, be careful, everybody.
Turnty
As someone who lives close enough that a 150 HCHO is frightening, the 150 reading was more than likely falsified (the monitor is in a calibration state, which uses the HCHO display as a countdown timer). It was probably done to overstate the danger to convince people to not be careless, but the actual reading likely isn't nearly as apocalyptic as implied. Not trying to discount the danger, but thought you should know.
Xina, Newgirl on the Block
I know this was mostly an update about your condition, but as a magic player I commend you for having the self control to not waste your money. I have 7 commander decks, another one mid-construction, and 2 more that I disassembled and have either moved the cards to other decks, my trade binder, or my bulk. My wallet is pissed off at me lol.
