Fun story. I had a flip phone years ago and you could have multiple recipients to a single text. And if the text was multiple pages, it would split into several texts. And you could resend already sent texts.
So one time I put in my girlfriend’s phone number in all 20 recipient slots. I then filled the text to the max size, though I don’t remember how many it split into. I then resent it over and over. This all took like 2 or 3 minutes.
Her phone was sending notifications over and over for the entire rest of the day. I’d guess at least 8 hours, probably more.
No but it’s unusable. I had a weird bug on one of my phones that sent an SMS over as fast as it could as long as the phone was on. I wrote the initial SMS, the contents were something like “hey, wanna hang?”, and the poor guy on the other side was blasted for several hours of literally constant notifications.
Luckily my plan at the time had unlimited free SMS.
Looking at the downmeter shot someone posted above, it’s half the SREs in the country. Not sure what the root cause will be, but damn that’s a lot of money down the tubes. I would not want to be the person who cost Meta and Google their precious thirty 9’s of availability lol.
That’s fair. Yall, I was really not trying to be shitty. It was just shorthand I used, thinking of their HQs. No ill intent intended and I apologize for any harm it caused.
It’s likely there’s a root cause, like a fiber cut or some other major infrastructure issue. But, Down Detector doesn’t really put a scale on their graphics, so it could be that it’s a huge issue at Meta and a minor issue that’s just noticeable for everyone else. In that case, Meta could be the root cause.
If everyone is mailing themselves their passwords, shutting their phones on and off, restarting their browsers, etc. because Meta wasn’t working, it could have knock-on effects for everyone else. Could also be that because Meta is part of the major ad duopoly, the issue affected their ad system, which affected everyone interacting with a Meta ad, which is basically everyone.
I’ve been an SRE for a few large corps, so I’ve definitely played this game. I’m with you that it was likely just the FB identity or ad provider causing most of these issues. So glad I’m out of that role now and back to DevOps, where I’m no longer on call.
Yeah. And when the outage is due to something external, it’s not too stressful. As long as you don’t have absolutely insane bosses, they’ll understand that it’s out of your control. So, you wait around for the external system to be fixed, then check that your stuff came back up fine, and go about your day.
I personally liked being on call when the on-call compensation was reasonable. Like, on-call for 2 12-hour shifts over the weekend? 2 8-hour days off. If you were good at maintaining your systems you had quiet on-call shifts most of the time, and you’d quickly earn lots of days off.
Yeah I’d be less worried about internal pressures (which should be minimal at a halfway decently run org) and more about the externals. I don’t think you would actually end up dealing with anything, but I’d know those reliant huge corps are pissed.
Man, your on-call situation sounds rad! I was salaried and just traded off on-call shifts with my team members, no extra time off. Luckily though, our systems were pretty quiet so it hardly ever amounted to much.
I think you want people to want to be on call (or at least be willing to be on call). There’s no way I’d ever take a job where I was on-call and not compensated for being on-call. On-call is work. Even if nothing happens during your shift, you have to be ready to respond. You can’t get drunk or get high. You can’t go for a hike. You can’t take a flight. If you’re going to be so limited in what you’re allowed to do, you deserve to be compensated for your time.
But, since you’re being compensated, it’s also reasonable that you expect to have to respond to something. If your shifts are always completely quiet, either you or the devs aren’t adding enough new features, or you’re not supervising enough services. You should have an error budget, and be using that error budget. Plus, if you don’t respond to pages often enough, you get rusty, so when there is an event you’re not as ready to handle it.
It’s the humidity. Whatever is water-soluble in the dust absorbs water and becomes sticky. Then the water evaporates and it’s like you’ve glued the dust to the wall.
After the collapse of the Soviet Union, a bunch of Anglo American economic advisers recommended economic shock therapy of basically removing still existing subsidies for lots of basic consumer goods, apartment rent, etc.
The effect this actually had was to basically completely collapse the economy even further to the point that it was pretty common for a worker to be paid not in money, but in what a factory produced, and theyd have to go barter it for other things.
It was also common during this period for people to have to attempt to barter say their TV or a tool for food.
What emerged from this is basically a naked oligarchic kleptocracy.
While the official mechanisms of government existed… people barely had any faith in them as the new democratic government had essentially immediately collapsed the economy and led to coups and coup attempts.
Putin stepped into this basically with the idea that over time general faith in the government could be restored with real economic gains and a strong sense of nationalism, focused around him.
Initially his strategies and tactics, while brutal, did deliver real tangible progress, as Putin is exceptionally adept at basically negotiating with the other oligarchs. Corruption was and still is the norm.
Overtime… yeah, basically now the entirety of Putin’s tactics and worldview and how the propoganda he uses domestically meets most if not all of Umberto Eco’s tenets of fascism.
One can have a fascist leader in charge or involved in many different forms of formal government, as fascism is closer to the ideology of a movement than it is to a form of government.
But now, is it a dictatorship?
Well, basically, officially, no, unofficially, yes, but with the caveat that basically the whole thing could fall apart if various oligarchs are not sufficiently placated, or if someone can basically emerge as a more competent strong man… or if the entire economy/society collapses.
Putin has proved extremely adept at keeping himself in power for the last 20 ish years, extending executive term limits, and basically for a period of time sitting back and letting Mebvedev be President for a term while Putin essentially semi-temporarily-retired to merely being the Prime Minister, then resumed as President.
tl;dr: Basically yes Putin is a fascist dictator, though there are some interesting differences with other fascist dictators.
Also please note that Trump is also a fascist, also by Umberto Eco’s tenants of fascism, and has outright stated he wants to be a dictator ‘if only for a day’. Yeah thats how that works, just one day as a dictator.
Ultimately this is why the MAGA crowd is so pro Russia and Putin. Both their leaders and movements are fascist.
I read your post with upmost interest, wondering where it would blow up, but in the end you saved it all :-)
IMO it was the URSS/CCCP that fucked up basically all dynamics in the country, and birthed against their will the robber barons, well before the fall.
A country relying on gosplans every five year that were circumvented by everyone was one of the problems “solved” by the groups once to be the oligarcs of Putin.
Anyways, putin has to go and russia must, even if divided into geographical entities and denuclarized, become democratic.
Yes it is true that the seeds of the oligarchs that would emerge were sewn by inadequacies of the former Soviet system, but
Dear god is that complicated, difficult for non Russian speakers such as myself to get a thorough grasp on without a good deal of research, and not something I feel I could approach accurately and correctly summarize.
I didn’t want to do the Putin thing and explain the entire history of Russia, I figured starting at the collapse of the Soviet Union is a decent starting point for giving at least an incredibly brief but hopefully accurate bit of historical context focusing on Russia under the leadership of Putin.
Every dictator exists on the courtesy of those around him and closest to him. How he keeps these strongmen in line differs, but a dictator can meet their end anytime any place by not balancing the needs of the people with the individual needs and wants of his strongmen enough. Needs and wants include threats of violence, food, money, anything you can think of.
Until you’re talking with someone from another country and you have no shared concept of time. Or you’re going abroad and you have to relearn what the numbers mean to fit the schedule. In the current system the numbers mean roughly the same in any country you visit.
What do you mean no shared concept of time. Just because the numbers are different doesn’t mean they don’t have time. Most of the time when telling stories people just say “the morning” anyways.
you have to relearn what the numbers mean to fit the schedule
Oh no, you have to remember like 2 numbers for wake up and going to bed? Or one offset to shift it? Different cultures already do things like start work at different times and eat dinner at different local times. So it will be no different than “people tend to eat dinner here around 19:00” then “people tend to eat dinner at 04:00 here”. Having relatively consistent local times may be able to give you a rough approximation, but so will just subtracting 9 hours or whatever the conversion happens to be.
But with such a system in place, what are we actually solving? If we’re agreeing on offsets (which would happen in a sane world), we’re just moving the information from one place to another. In both systems there is a concept of time zones, but it’s just the notation that’s different, which adds a whole new bunch of stuff to adapt to that’s goes very much against what is ingrained into society, without offering much in return. It’s basically saying “it’s 10:00 UTC, but I’m living in EST, so the local offset is -5 hours (most people are still asleep here)” [1]. Apart from the fact that you can already use that right now (add ISO 8601 notation to the mix while you’re at it), it doesn’t really change the complexity of having time zones, you just convey it differently.
Literally the only benefit that I can come up with is that you can leave out the offset indicator (time zone) and still guarantee to be there at the agreed time. Right now you’d have to deduct the time zone from the context, which is not always possible. That doesn’t outweigh the host of new issues that we’d have to adapt to or work around in my opinion.
[1] In practice we would probably call that 10:00 EST, which would be 10:00 UTC, but indicate the local offset.
The offsets would only be used for computer actions like “snooze until tomorrow” or configuring the default time that day/night mode switches. It would be a fairly rare occurrence. In day-to-day life people wouldn’t really think about that. Talking about times using consistent numbers would be incredibly valuable when communicating with people in different places which is becoming more and more common as our world becomes more connected. (How many people have a friend or family overseas? Probably the majority of people)
Making the “default” way of thinking about time globally consistent would be amazing for communication.
I agree that the incredibly painful transition wouldn’t be worth it. I just think that assuming we did make the transition, the end result would be better.
But then when you’re talking about 10:00 hours without specifying anything else, it actually means something completely different in the local context, apart from it being the exact same time globally. It doesn’t tell you whether it’s night or day at the other persons location. Your default point of reference in that system is the world, while even today, time is mostly used in a local context for most people. When I’m talking to someone abroad and I say “my cat woke me up at 5:00 in the morning”, I expect the other person to get the meaning of that, because the other person understands my local context.
When planning meetings you’d have to now the offset either way, because I’m not going to meet at idiotic times if there is an overlap in working hours between the two countries, which is something that you’d have to look up regardless of the time system. And if I send out a digital invite to someone abroad, the time zone information is already encoded inside it, and it shows up correctly in the other person’s agenda without the need to use a global time. In that sense UTC already is the global time and the local context is already an offset to that in the current system. We just don’t use UTC in our daily language.
But if it helps: I do agree that in an alternative universe the time system could’ve worked like that and it would have functioned. I just don’t see it as a better alternative. It’s the same complexity repackaged and with its own unique downsides.
Yes, there is an offset somewhere, but the questions is what is more useful.
My main argument is that talking about global times is more convenient and more useful most of the time. Sure, if you are scheduling a meeting you still need to consider when the person is awake/working but that is no harder with global time and in fact can be much easier. But most importantly at the end it is very obvious what time you picked and if it works for everyone. If you say “let’s meet at 18:00” and I usually get to work at 19:00 that sets of red flags right away. If I agree to meet at 10:00 $city I need to do math to confirm that. Also I would much rather everyone just give me “working hours” in global time when trying to schedule across multiple people, rather than having to juggle working hours + time zones for each participant.
I think the concrete difference comes down to which of these properties is more important to you:
Agreeing on a time.
Knowing what time-of-day a particular timestamp is for a particular person.
Personally 1 is far more valuable to me. It seems that 2 is minor even now, but will be mostly solved by language as well. Sure, our current ability to approximate someone’s schedule probably won’t be perfectly matched even with new language. But it seems like the delta will not be enough to outweigh the benefits of 1.
“my cat woke me up at 5:00 in the morning”
Sure, that’s nice, but I’m sure language would quickly adapt. You can always say “very early” and I’m sure that we will get used to talking about local times more as this happens. As it is this still may not be that notable if I don’t know that you work night shifts. Languages would evolve and I don’t think it would be any worse, just different.
I think if I had to wake up to the moon to write emails and make spreadsheets until sun up so my boss could read them in sunlight from their balcony I would cause dire problems.
That seems even more useless, then, because if I wanted to contact someone elsewhere on the planet, I’d still have to check the local working hours vs the local time.
How? What’s improved? I still need to look up what the local working ours would be in a certain area I’m trying to call as 9-5 in what is currently EST would be 12-8 in PST. That’s pretty much the same as checking the time zone difference. What’s changed? It would also create regional specific timing. If I’m from North Carolina and I’m talking to someone from Sweden, the idea of “waking at four thirty in the goddamn morning” would need to be translated into a local understanding of what that means. I think this would create far more ambiguity than it would eliminate and I’m not sure what benefit comes from it.
What are you on about? Countries don’t just decide to mess with their time. And for the one a decade change you can just look it up. And I have no wish to count backwards with you people.
The trouble is that “2 AM” now means radically different things depending on where in the world you are, and you lose any ability to be able to intuitively reason about the time in other parts of the world from you.
We’d get used to it. In China they only use one timezone across the whole country, and they just accept that daylight is at different times in the East versus the West
Yeah but somewhere between 87-90% of the population is in the northern hemisphere so for the vast majority December - March = Winter. Although I guess depending on local climate it might be more like dry vs rainy season, or not much difference between “winter” and “summer”.
Months and seasons are much simpler because it’s always a 6 month offset rather than anywhere between 1-24 hours depending on location. It also doesn’t affect scheduling as much. If you’re interacting with someone on the other hemisphere, the outside weather generally doesn’t affect your decision in any meaningful way.
94% of the population of China lives in east of the heihe-tengchong line, which means that for 94% of the population the timezone is at most 1 hour off of the “true” time, which is pretty normal.
Half of Canada’s population is less than the population of New York State. Y’all tiny. Maybe more people would live there if it wasn’t a frozen wasteland.
I think it would be better to think of it as, “Do we want everyone to have the same general idea of what 5pm means? Or to have everyone be on one time?”
Edit: I know it’s an imperfect question as northern/southern latitudes can get dark sooner/later than the other pending the season. But 5pm to a Californian is going to feel very different than to a German if we’re all on one time.
Those are just my thoughts, though.
UTC is most universal, as it’s kinda constant (by lack of/knowing a better word). GMT has DST, so that time changes twice a year, UTC is used as base for all timezones, no matter if and when they have DST.
with sonic runners, they had to reverse engineer the whole server infrastructure. i’d say the chances of you patching out server checks without decompiling the entire game are low.
but i’m not any kind of programmer, so i’d love to be proven wrong.
I wonder if in this case you could just mimic the OG server and return a 200. Could just do that with a hosts file change. Although if it’s looking for anything else from that verification endpoint then decompiling would be the answer.
Server checks aren’t always just an arbitrary gate at the start so this makes sense. For example, if the game has unlockable things (paid or not) and those things sync across multiple devices, then server checks to make sure your progress get saved and merged together properly can be woven through the whole game.
I’m 29 and work with people in their 40’s and up. None of them have their shit together.
The idea that you must have a fully set career and planned life in your 20s is a conspiracy and a scam made to make you feel less-than and worse.
Beat em. Live life at the pace it comes to ya. Don’t think about where you should be. There is no should. Society is a game of dress up and everyone is a nervous ape that just wants be to loved.
Yeah the best thing I can say is play as much as you work but also be kind to your future self. Do things today to make your life better in the future. That can be anything from washing the dishes to starting a retirement account. I say start a retirement account because compound interest and decades until you retire is a powerful combination and no matter what you do, more money can usually help.
Ubuntu. They’ve managed the worst of both worlds: like Debian, everything is old (though admittedly not as old), but unlike Debian, everything is broken/buggy/flakey. It’s the old-and-busted distro that I’m routinely told is “the only Linux we support”.
If Debian is not great as a desktop distro, it’s at the very least remarkably stable as a server distro. The sentiment extends somewhat to Ubuntu LTS. It could be better, but in terms of uptime and just working I can’t fault either distro.
Nothing at all, the main issue is that with graphical applications developers have an hard time to package things for all the useless distros out there and some other distros like Debian on stable will only haver older versions of software. Flatpak solves both of this issues.
I just now discovered why people are hating on Ubuntu pro by receiving a note that Ubuntu will not provide security updates for some apps it came with unless you activate Pro.
I think I’m done with Ubuntu on any personal machines.
Yeah I didn’t offer much input on personal devices because I did use Ubuntu for awhile as a personal environment and it’s fine, but could use work. I think personally I like Debian better, but if I want a clean GNOME experience Fedora is probably the move.
Currently using Bookworm and KDE as my desktop right now. Works really well! If I need more up to date software I use Distrobox and run whatever distro’s version of software I want. I have both Debian Sid and Arch Firefox versions installed on my machine right now just to see if it worked and it’s flawless. I mostly just run apps from SID container and it exposed the app to my desktop wonderfully. Really the only way I will fly these days.
Don’t forget that Ubuntu was the first distro to both sell user data to Amazon, and show you ads in the terminal. But it seems like everyone forgets about it as soon as canonical goes “whoops, our bad, we didn’t think you’d mind, it’s opt in/out now”.
On top of that I’ve seen allegations that they’re illegally collecting data from Azure Ubuntu users to send them spam about Ubuntu enterprise.
I was an Ubuntu fan many moons ago. Then I fell in love with Mint when it was just all around a better version of Ubuntu.
Then I ended up with a new Windows laptop for years and forgot about Linux entirely. But this year, I’ve actually returned to Ubuntu. I like how it has a fresh and different look and it still performs well on my now aging laptop. Mint is always my go to recommendation to others, but I just wanted a different look than your standard Windows-like look that Cinnamon has. I was initially turned off way back when, when Ubuntu switched to Unity, but now a difference in look appeals to me. We’ll see if I get annoyed with Snaps or not. So far, everything has been running smoothly.
If there was a GNOME fork of Mint, I’d likely be using that. I get that you can technically install whatever desktop environment in whatever distro you want, but for compatibility sake, it’s best to roll with what your distro comes with.
A literal move actually. 20 years ago I moved from America to a country with universal health care. That has saved my family probably close to a quarter million bucks in health care fees alone.
Not to mention the headache. It feels like every time I get treatment I have to argue with my insurance until they eventually cave (assuming it’s something they actually cover). I asked my mom if this is how healthcare is really like and she said “yeah it’s just the culture, it’s normal” acting as it having to beat the fuck out of a metaphorical piñata to pay for life saving treatment is ok or acceptable. Like why the fuck can’t you just pay for the treatment that I fucking pay you to cover?
Oh god, I hear ya. A long while back I needed some serious treatment and ended up in a hospital for two weeks. It was the first time I had ever gotten truly sick, so I was dreading the final bill. But when the docs said nah you're good, it's covered, just take your meds and come back in a week for your follow-up, I damn near died a second time :P
“Resistor” usually implies a device with a fixed resistance value. A rheostat is a device with variable resistance. The two terms are not synonymous.
As for condenser and capacitor, Wikipedia has an interesting tidbit:
Early capacitors were known as condensers, a term that is still occasionally used today, particularly in high power applications, such as automotive systems. The term was first used for this purpose by Alessandro Volta in 1782, with reference to the device’s ability to store a higher density of electric charge than was possible with an isolated conductor. The term became deprecated because of the ambiguous meaning of steam condenser, with capacitor becoming the recommended term in the UK from 1926, while the change occurred considerably later in the United States.
So, that’s where Finnish borrowed that word… like so many other words too. Perhaps calling it borrowing isn’t entirely fair, since this thing has been going on for so long and it’s been really extensive. Sort of like the way the British Museum “borrowed” a significant part of their collection from somewhere else.
Yes, most of people say condensador but I between engineers/technicians in Hispanic America we use both terms depending on the system (condensador for high voltage and capacitor for low voltage).
Have your neurologists agreed with your estimate of impending doom, or is this a conclusion you have come to on your own?
Disturbance in sleep breathing such as you are describing could be as simple as sleep apnea which is fixable.
In your previous post it seemed like the way you discussed your relationship with neurology was that the institution failed you and that you had come to your own conclusions regarding your issues being the brain stem, and mentioning new symptoms of breathing issues as being why you thought your time was limited but not indicating this was feedback you were getting from your doctors.
My concern is that the language you are using in describing your situation has progressed over the past month to the point you are now describing your fears about further progression as a top concern in combination with your fatalism around the ultimate outcome of what you have going on, even desiring a way to leave a lasting mark in only one day from now, which seems very alarming in that you might try to take matters into your own hands.
That may end up killing you quite unnecessarily when your issues, particularly the latest symptom, may not be as intractable as you think.
You’d mentioned before that the tests performed by the neurologists all came back as normal. This disconnect between symptoms and tests isn’t uncommon, and you might want to look into finding a neurologist that specializes in functional disorders - if that’s what is going on it can be treatable but the longer it goes on without treatment the more difficult it is to treat.
In any case, you absolutely should not be self-determining prognosis without it coming from a medical professional, and should never take matters into your own hands based on a self-determined prognosis. If your doctors have only given you a short time to live, so be it - but I get a strong sense given the progression of what you’ve said in your posts to date that this isn’t the case and you may be in life-threatening danger from your brain, but not in the way you think.
TL;DR: Do your neurologists agree that your recent breathing issues mean you are likely to die soon?
Actually, they didn’t mention any specific diagnosis. And you might want to read their post and history more closely, such as this line above:
I read that this is likely because the disease finally reached the part of the brainstem that controls breathing, and that if it gets worse, it may be fatal.
It really looks like OP is coming to their own conclusions by what they are reading online, not by what they are being told by a neurologist based on exam and tests, and is then being driven further into a spiral of seeing the condition as inescapable because they’ve convinced themselves of a worst case scenario.
This is probably exacerbated by their comments in the past of having normal test results and feeling dismissed by their neurologists in spite of their symptoms, which as I said is not all that uncommon. Most neurologists that don’t specialize in functional neurology don’t handle patients well that have normal test results, and may not even be familiar with the more recent research regarding functional neurological disorders.
Someone close to me is a neurologist who specializes in functional neurology, so I hear a lot about frustrations regarding the ways in which patients with normal tests but abnormal symptoms can be dismissed and feel unheard by their general neurologists, hence my recommendation OP seek out a subspecialist.
But the more pressing issue is that OP’s progress in their post history is very alarming with a number of red flags for potential self-harm in the near future (such as “hey Lemmy, how can I leave a permanent record for when I’m gone in a day”), which is especially frustrating given that what they have going on is likely treatable and their self-diagnosis and prognosis is unlikely to be agreed upon by a medical professional without positive test results, which they previously said they didn’t have.
Random stranger here, but thanks for calling this out. Hope it helps OP, but I’m just generally glad to see someone’s paying that much attention on the internet.
So, I just went ahead and wrote out basically everything in this comment chain. Most of what I described of my disease before has been a simplification because it’s too complicated to describe in a simple post, but some people had concerns, so I finally described it in detail. I had previously left out a lot of details pertaining to progression and the fact that most of the early disease activity correlates with physical events surrounding a herniated spinal disc, before increasingly going rogue and progressing all on its own. A couple of doctors gave me some good insights, but the disease is still largely mysterious.
Don’t worry; I’m not planning on doing anything drastic. The urgency is moreso a desire to have peace of mind that everything I write will be published. The passage of time makes me feel uneasy now because my disease is now touching vital functions. Most people assume they will wake up the next day, but I feel like I can’t fully make that assumption anymore. I want to secure my ability to leave a legacy. Once I do, the stakes won’t be so high; I can be more at peace with the situation and won’t have to worry about the odds.
I’m very unlikely to die tomorrow or this week. I will most likely survive for a bit longer, perhaps a few months or so. This writing thing is a long-term process, more of a retirement activity that I work on every day rather than something I do all at once. I just feel like the odds of survival each day are closer to 499 in 500 rather than 99,999 in 100,000. The true odds are, of course, unknowable, so I am forced to work off of intuition.
I am still seeking a diagnosis. I’m currently pursuing a sleep study, visit with a neuro-opthalmalogist, and a visit with a new neurologist so I can have fresh eyes on this disease in light of the new evidence. I’m hoping that there is enough progression now that the damage will be radiologically significant. The problem is that I am still months away from them, and I don’t know how long it will take to finally get a full diagnosis, so I want to prepare for the worst ahead of time so I can leave behind a large collection of art and things I’ve made. But I agree with you that there is always a chance that this is survivable; I just cannot know right now. The chaotic breathing is quite concerning, steering me towards accepting the worst outcomes. But I am by no means giving up.
The bottom line is that the only time I can guarantee exists is now, with the probability of each subsequent second existing following a gradual exponential decay curve that we cannot directly measure. The solution to this problem is to set up the website and stuff for my family now anyway, no matter who’s right or wrong. No matter if my disease or something completely random gets me. No matter if I live for 5 more days or 5 more years. I just feel strongly about keeping a record of myself, and I know that if I had a different serious health problem, I would do the same thing. I have simply crossed a threshold where I am not comfortable with the risk anymore.
Perhaps I’ve made the impression of having a volatile or unhinged personality, and although this time is pretty stressful, it hasn’t prevented me from enjoying the things I do, writing about my ideas, and even trying art. I might seem a bit manic with my impassioned rant, but really, that was just something I had a lot of fun writing. I was always really awestruck by the nature of existence, and I don’t usually swear that much, so I thought swearing like crazy here would be a good way to communicate the magnitude of my appreciation.
I appreciate your concerns and criticisms, though.
There’s a good chance he has something going on causing him to have a distorted perception if reality. I deal with a lot of people like this who have paranoid delusions and often seem manic in the manor demonstrated in this post. What exactly have they done to treat it so far?
You make an excellent point; specialists would be able to give a more definitive answer, and I mustn’t get complacent just because I have accepted this outcome. On the contrary, I think my chance of diagnosis is better this time around. The only issue is, I have to wait for literal months to talk to a neurologist and get more tests.
I have to consider the risk: do I wait for months - that I might not have - to go through the medical system again, and risk leaving almost nothing behind if they don’t catch this in time? Or, do I set this up now, while still doing everything I can to get medical help, knowing that if it’s indeed terminal, I won’t regret the decision I made? I want a lot of time to write about all sorts of things.
My last neurologist ignored half of my symptoms and it took half a year for him to fully rule out his theory, after which point he said there was nothing he could do. He only focused on the full-body pain when I was having vision and heart rate problems at the time and my symptoms were progressing quickly. He diagnosed me with small-fiber neuropathy, which does not explain the pattern of attacks I have, the vision damage, motor symptoms, and it definitely doesn’t explain the cognitive and breathing issues I have now. He did eventually diagnose me with POTS (very fast heartbeat when standing), but that was just one comorbidity out of the sea of unaddressed symptoms. I waited months for a second opinion, and all she told me was to just listen to the first neurologist.
Now that my symptoms have significantly progressed again, I think I have a better chance of getting a real diagnosis, not just identifying my comorbidities (e.g. POTS, neuropathy). The tests you mentioned were two years ago at this point, so it’s possible that a new MRI will finally be clear enough to show damage. The problem is that, again, it will take a long time to verify a diagnosis, and that’s only if it can be verified; it might be too tricky, for reasons I’m about to go into.
The only faster way appears to be the emergency room, and they don’t take too kindly to me being there if I’m not literally hours from death. I had an attack where I could barely move my arms and legs at all for 2 days, and they immediately sent me home even then. This has led me to the conclusion that the emergency room will not see me until I’m already in irreversibly critical condition. Even if I was diagnosed then, it would be too late for me to leave anything behind.
I didn’t go into more details about my condition because I didn’t want to bore people, but I’ll describe it here, because it’s so unusual that I don’t know if doctors will be able to diagnose it in time, and indeed, this might be a big factor as to why I haven’t been diagnosed yet.
It all started when I was working at a restaurant and I was pushing through severe upper back pain (which I developed from overworking myself). Suddenly my arms became weak and numb, and an MRI later would show a herniated disc in the C7-T1 area. This was very scary, but after a week I was back to normal… or so I thought. This is where the weirdness begins. It all started with tingling in my hands. Then it turned into random pain. As I worked more and more, eventually, the pain suddenly jumped, spreading to not only my arms, but also my legs and feet. This is when I knew something very wrong was happening to me. I quit my job in hopes of avoiding further progression.
A couple months later, after carrying something heavy downstairs to help my disabled father, I felt a dull pain in the back of my neck where the disc was. I ignored it, thinking it would wear off. The next day, my nerve pain erupted all over my arms and legs again, but it had also spread to my face and the back of my head. I was in a panic at this point, and my primary care provider informed me that a neurologist would be a 6-month wait.
One thing that brought me comfort was the idea that I just had pinched nerves, according to my mother. I looked up the spinal nerves and the regions that they innervated and thought “Wow, I must have a lot of pinched nerves, but it makes sense since my muscles are in so much pain and I was working so hard.” Applying this logic to the pain I had now would nonsensically imply that nerves directly attached to the brain were somehow being “pinched,” specifically the cranial nerves that innervate the face, branching out from the brainstem. In other words, the pinched nerve theory was wrong. This realization was terrifying and I tried to ignore it, thinking that I just didn’t have enough context. Surely it wasn’t actually in my brain, right? I’m just overreacting! Everything will be fine!
A couple months later, I was taking an exam for college. I was looking straight down for 2 hours, and that familiar dull pain in my neck was back. I dreaded what was to come next. Sure enough, exactly one day later, the nerve pain flared up and spread… to nearly my entire body. Arms, legs, hands, feet, stomach, groin, face, head, neck, even the eyes. They were all in pain nearly constantly. The pinched nerve theory made no sense anymore. Every single nerve root, including some in the cranium, from bending my neck? All comfort was out of the window. This would start a wave of progression that would last for several months.
One day, there was a dull pain in the back of my eyes and my vision suddenly blurred, and nothing I did made it go away. I was panicking from barely being able to see anything. Periodically, the blur would fade in and out, until it stopped. Later that day, I noticed that my vision had gotten darker. It never improved. At this point, I had a new theory: my central nervous system was being attacked by my immune system due to inflammation from the the disc injury. Three weeks prior, I had read about optic neuritis, a condition that causes the blurring and darkening of vision, often leaving permanent damage over the same timeframe. It is closely associated with autoimmune disease. I believed that it could happen to me, and I was correct. However, I did not believe the disease was multiple sclerosis due to the involvement of the disc; there was no record of a physical injury causing MS disease activity. The disease would continue, causing my heart rate to beat insanely fast from just standing (POTS), and making me feel like I had to pee every single minute.
Finally, I got the chance to see some doctors. The neurologists I mentioned earlier didn’t help much, besides confirming that I had POTS. I also managed to convince some ER doctors to give me MRIs, which helped in identifying that this is unlikely to be a purely mechanical problem:
My new PCP told me that the herniated disc was “touching” the spinal cord and was very suspicious, especially given its link to my symptom progression.
A spine specialist told me that the disc was not severe enough to cause the symptoms I was having, and that something else must be causing them.
This suggests that the herniated disc is in close proximity to, and at some points may be in contact with, the spinal cord, but would not cause these symptoms on its own. What nonmechanical process could cause such widespread symptoms in reaction to weird things happening in the body? The immune system.
At this point, I knew that anywhere could be fair game. It was horrifying to think about. Among my most harrowing thoughts was the idea that my breathing could become compromised. But maybe I will be fine, I thought.
Nearly 2 years passed. I changed my life to avoid ever irritating the disc ever again. My pain very slowly died down, but I gradually experienced worsening memory and got a few new symptoms, like slightly worse balance and feeling random acceleration, but probably nothing doctors could definitively measure. This progression seems consistent with autoimmune activity; these are common symptoms in MS, perhaps the closest, but admittedly imperfect analogue. I felt like I had reached a dead end with doctors and wouldn’t be diagnosed without further progression, especially with many of them telling me to just listen to the other doctors who didn’t help me.
Last month, I got the first flare-up that did not appear to come from my neck. This caused 5 main symptoms all at once:
The breathing problems described in this post, which gradually got worse over the next few days.
Completely involuntary large-scale movements. This includes suddenly raising my arms up or sitting up in my bed, without any input at all.
Auditory hallucinations at night, which include loud whooshing sounds, sudden buzzes, and people talking (including someone saying “Hello?”).
Random popping, crackling, and muscle twitching inside of my nose.
Bladder function getting weaker.
At first, I thought the breathing problems were just sleep apnea and I needed to lose some weight. But then, the other symptoms quickly developed. I also realized how clear the breathing sounded, how chaotic my breathing pattern had suddenly become, and how I didn’t seem to be snoring or anything at all (characteristic of obstructive sleep apnea). I realized that this might be central sleep apnea, where the brain fails to control breathing during sleep, explaining its presence alongside the cluster of new neurological symptoms. I then read about how in autoimmune neurological diseases like MS, symptoms like these are associated with mortality due to respiratory failure. This paper on neurological respiratory failure states:
Inflammatory and infectious diseases of the CNS are a very heterogeneous group of diseases that can affect CNS function with different patterns of symptoms and signs. Pulmonary complications are related to an altered breathing control system, severity of associated reduction of consciousness, and involvement of respiratory muscles. Pulmonary impairments have long been recognized as major causes of morbidity and mortality in individuals with advanced multiple sclerosis, due to acute or chronic respiratory disorders. Chronic RF [Respiratory Failure] involves bulbar [brainstem] dysfunction with swallowing disorders, altered central respiratory drive, motor disorders following corticospinal lesions, or sleep-disordered breathing[includes central sleep apnea]. Acute conditions mainly involve spinal or bulbar [brainstem] relapse [flare-up] with extensive plaques, neurogenic pulmonary edema, or ARF [Acute Respiratory Failure], often following sepsis. Common pulmonary-related complications in encephalitis are poor gag reflex, pooling of secretion, and loss of swallowing, with risk of aspiration pneumonia and RF [Respiratory Failure] development.
Deaths due to MS can occur either by acute death due to brainstem involvement or to respiratory failure, or as a consequence of chronic disabilities leading to bronchopneumonia, sepsis, urinary tract infections or complications from decubitus ulcers.
So, there is precedent for this kind of process being fatal, with specifically brainstem and respiratory issues being a common cause. What matters is progression speed and location, and I already have significant progression and directly compromised breathing.
Think about if this was you for a second. There’s a process that’s taking over your nervous system, giving you permanent damage, and now you suddenly have a new cluster of symptoms, more than half of which cannot be explained by anything other than brain dysfunction. (Where is the data for these coordinated muscle movements and sound effects coming from?) And now, your breathing at night is chaotic, randomly slowing down, speeding up, and stopping, followed by sharp inhaling. Sometimes you breathe in or out twice in a row. And you now know that your disease is unpredictable and progression happens no matter what you do.
Now tell me, in the context of all of this, would you be comfortable waiting several months for a full workup by a specialist before preparing for the possibility of death, when you know your disease is weird enough that they might not figure it out in time? Would you risk sacrificing your only chance to pour your emotions out on hundreds of pages and let everyone know how much existence meant to you, how amazing it was, and all of the deepest and emotional things about you? Would you make that bet? You may never have the luxury of knowing, and the disease will continue on no matter what; it doesn’t care about the months you have to wait for doctors.
It’s not about the theory being right; it’s about it being possible. My arguments and theories are not perfect, and you could logically break them down in many ways. You could say that I don’t know for sure that it’s fatal, and you would be right. But that’s not what matters here. Even if there is a 90% chance that I am wrong, that 10% chance I’m right is too high to risk losing the chance to leave my legacy. I will not be taking that bet.
I completely understand your point; a definitive diagnosis will always be better. And I am indeed pursuing multiple paths:
Trying to get a neuro-ophthalmologist to confirm optic nerve damage.
Doing a sleep study to measure what happens to my breathing patterns and oxygen levels when I fall unconscious, as well as having a sleep doctor assess the unusual patterns.
Trying to get a new neurologist to assess the condition, hopefully ordering new MRI scans and/or a spinal tap. I suspect that I am at the point where the damage will be radiologically significant.
All of these will take months to get appointments, resulting in the current dilemma - that I might not have the luxury of knowing in time. If I am correct about the risk and neglect to preserve my legacy, the price will be astronomical.
I don’t want to give people the impression that I’m about to do something reckless or completely give up on seeking help. I am also prepared for the scenario where I miraculously survive. I’m not going to refuse emergency medical care or end things early, if that’s what you’re concerned about. You’re right that the fatalistic attitude can get too carried away and I should always challenge those biases so I don’t miss something. I’m just not getting my hopes up in case things go badly.
My desire to set this up quickly is just a result of me being uncomfortable with the odds of every passing day, not an indication that I intend to do something drastic. I just want the peace of mind that people will see my writing. Perhaps I hadn’t made it clear earlier, but I plan to write for a long time about all kinds of things, for pretty much however long I have left, building a larger and larger collection of pages.
I appreciate the comment and your concern. Sorry for the whole essay, but I felt like the context was necessary.
TL;DR: The entire history of my disease is highly unusual and I’m not optimistic about the efficacy of the medical system to diagnose it in time. I will, however, continue to seek tests and diagnosis in whatever way I can. Basically, there is a very unusual reaction to a herniated disc touching my spinal cord, causing widespread and prolonged phases of neurological damage. In early stages, the disease flared up in response to pressure on the disc, but now, I am getting flare-ups with no apparent physical cause whatsoever, suggesting a runaway process. A spine specialist told me that the herniated disc itself cannot be responsible for this kind of widespread damage, suggesting a different process. I believe that this process is an inflammatory autoimmune reaction.
I won’t do anything drastic. The reason I’m worried about setting this up quickly is peace of mind; I want to know that even if the worst happens, people will be able to read my writing. I plan to write extensively, for as many days as I can, to capture as much of my life as I can.
I will pursue expert opinion as best as I can to finally get a full diagnosis, but I don’t know if I will have that privilege due to the sheer amount of time it takes. In the meantime, I am forced to work with uncertainty and my own non-professional analysis, which, although supported with a couple of doctors’ opinions, is still theoretical at this stage.
However, I was able to predict symptoms and aspects of my progression in advance, and, even if there’s only a small chance that I am correct, I consider the risk too high compared to the price of losing the opportunity to share my genuine self to my family and the world. I remain open to the possibility that I could survive, but I want to prepare for the worst case, because I feel like if there’s any sign I should prepare, it’s the chaotic and disorderly breathing that I developed last month, a symptom that, according to medical literature, may progress to life-threatening complications in the context of inflammatory neurological disease.
Thank you for this thoughtful comment. I was also quite worried after reading this post and you took all the words right out of my mouth. Conversations about functional disorders (if that’s what’s going on) can be very tough and aren’t always handled the best, or are unfortunately sometimes avoided entirely even if that’s the suspicion. There’s also still a ton of stigma out there about them (including inside the medical community) due to outdated Freudian theories without much if any factual basis and other myths like the symptoms are imagined or something. Different varieties of functional neurologic disorders may compromise up to a third of all outpatient neurology visits at least in part, the symptoms can be as broad reaching as the nervous system itself, and there’s still so much we don’t know about them with a great need for more research. I’ve found https://fndhope.org/ to be a great online evidence based resource for patients and families.
I actually had the reverse problem: some stupid neighbor kept trying to pair something with my smart TV, to the point where I couldn’t watch TV at times, due to this moron’s insistence. I looked in the settings and also found I couldn’t disable Bluetooth, or blacklist devices, so I thought of a simple solution: changing the TV name to “virus”. From that day on, no one tried to pair anything with my TV.
I feel stupid for never having looked into changing Bluetooth device names but it's clearly not easy or I'd be naming all the Bluetooth shit I own crazy stuff.
I’ve not yet met a device whose Bluetooth name i couldn’t change. Just Google, “How do I change the Bluetooth name on “x device”?”, and substitute, “x device”, with the manufacturer, make, and model of the device whose Bluetooth name you want to change. I believe in you.
I actually had a similar situation. I found out I had a neighbor stealing my wifi a few years ago because of BT shenanigans.
I gave the guest wifi pw to the previous neighbor, who must’ve written it down somewhere. The new neighbor was a douche who kept piggybacking off of it to watch stuff with his shitty little kid, so I’d occasionally get notifications on my network. When I confronted him about it, he got belligerent and threatened violence.
So I paired to his device and blasted porn at full volume.
Well then, just hope that your neighbor doesn’t turn around to pair into your device and blast porn at full volume on your TV, get you pissed off as to WTF you can’t turn it off, end up throwing the whole thing into the Recycle Bin, and look into some kind of CRT TV that can’t be f***ed with like you are also pissed off with the current company that produces the current flat screen stuff.
It’s all good, my dude. I run old school cabling for my devices so I never have to deal with these shenanigans. Plus it’s been over a decade since this happened and I haven’t seen that family since. They left me alone after the incident and were quite civil afterwards.
Also, you okay? You seem quite upset about an anecdote on the Internet that has nothing whatsoever to do with you.
Not sure what anecdote is, but I’m actually quite upset about these shenanigans the companies that produce the current flat screen stuff they allow to happen in the first place.
For me emoticons were something that started when all of the boomers came to Facebook. Floods and floods of useless emojis left and right. So now I feel weird using them, like I’m cheapening the platform while also acting like the people that ruined Facebook for me
I have a negative attitude to standard emoticons built into Android and iOS. They don’t look good, they’re too many.
I’m interested to know who uses emoticons depicting, for example, player rewind icons or rectangular shapes. Are there people who use these emoticons at least once a year?
Could just look like this. It’s a dumb little stopwatch app I made some time ago to explain a different concept. All it uses is plain HTML, CSS, and Javascript. Because I could use emojis as icons, I didn’t need to bring in a separate icon pack.
If I didn’t have access to emojis at all, I probably would have just used text only… But if I’m prototyping an app that I’m building for someone else, it helps make it look closer to the real thing, and that’s kinda nice.
Hmm… Then wouldn’t it be logical on the part of mobile OS developers to make the extended set of emoticons hidden by default and enabled through system settings? Or make an extended set of smileys as an app that can be installed through the app directory?
Maybe! The MacOS emoji picker actually does this: You can choose which categories to include or omit, and set favorites… And not all of them are enabled by default. No reason phone keyboards couldn’t do the same thing. MacOS calls most of what we’d consider “emojis” to be one category though, lol… So that wouldn’t actually solve the problem. But it’s possible.
Installing them like an app wouldn’t really be a thing though-- Emojis are part of Unicode, which means they’re essentially text characters. You wouldn’t want to omit those from the system entirely, because if they appear in text, you still want to be able to render them. Kind of like… You might not need (or want) a convenient way to write an “é,” but it’d be annoying if somebody wrote “the appetizers were good, but the entrée was just okay” and you saw “entr�e” because you didn’t have the right app installed.
Personally, I’d rather have access to everything and just use search to find the one I want, but it might be nice to have the option to omit categories that you aren’t interested in.
Agreed! Although the little image things on message boards like phpBB, ProBoards and Invision were also emoticons, even though they were basically early onset emojis
Most boomers I know still can’t use a mouse. Millennials and gen X fill most of the old Internet in my mind, but the original '91 Internet was a lot of tech focused boomers, but also was significantly Gen X. '95-'99 seemed to pick up more traction with my generation.
I think it’s sample bias. I graduated with a CS degree in 85 and started working as a software engineer in aerospace. It was pretty much all boomers when I started.
There might be more people from later generations who grew up doing their homework on computers, so the disparity between tech folks and non-tech folks in those later generations seems less, but the Internet was mostly created by boomer tech people.
I’m the senior manager of the organization I started in in 85, and I still have boomers working for me.
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