9 ms·

> The morale of the story, you need to sometimes tackle your own health and take matters into your own hands The frustrating thing for me is that doing so is o

by yosito 4y ago

> The morale of the story, you need to sometimes tackle your own health and take matters into your own hands The frustrating thing for me is that doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. It's not anti-science to take your health into your own hands. It's anti-outdated-underfunded-medical-systems.

toss1 4y ago
>>doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. Yup, it is. Because like a cargo cult, most of the external signs are similar. The difference is in the depth of knowledge used, the rigor applied to the evidence, whether the person is actively avoiding or seeking confirmation bias, etc. So, yes, much of the time, it is actually anti-science. That said, there is no reason to hide a person's own data from them. Even if statistically, they are more likely to abuse it. The fact that he had to go get a gray-market machine hacked to use open-source to get his own data is unconscionable. It should simply be required that all medical devices have an easy method to provide data to the user/patient, such as a Patient_SDCard_Slot, or Patient_USB_port. Obviously it wouldn't provide access to the internals, but provide a parallel output data stream that they could use or not use as they choose.
- toss1 4y ago
  Edit, meant to type "it sometimes is", not it is (didn't check my writing, too late to edit)
hakunin 4y ago
> It's not anti-science to take your health into your own hands. It depends on how exactly it was taken into one’s hands right? Can’t really know if it’s pro-science or anti-science until you see what a person is doing. Most people do pretty irrational stuff, based on stories of a doctor in my family.
- AbrahamParangi 4y ago
  Experiments are science, and if we knew how they’d turn out beforehand they wouldn’t be experiments. Sort of definitionally you can get pretty weird or unsafe and if you’re comfortable with it not working it’s still a totally valid experiment.
  - ceejayoz 4y ago
    Experiments are potentially science. Not all experiments are done in a scientific manner. (And even then, experimentation is only a part of the scientific process.)
  - PragmaticPulp 4y ago
    The article is about someone following what is basically the established diagnostic and treatment flow for sleep apnea. It’s not exactly an experiment. He was pushing the process forward faster than his medical system could, but it wasn’t novel or experimental.
  - version_five 4y ago
    No, experiments are really only science in the usual sense if you have an expectation of how they will turn out and you run the experiment to test your hypothesis. And properly constructing the hypothesis, to include past knowledge and some causal mechanism is vitally important, the causal part being often neglected even in "real" science. There was a lot of this during Covid (which I know is a bad example because of it's political baggage, but anyway). Various "x cures / helps with covid" trends (sometimes including studies) but not really based on a anything. It's not really scientific to just imagine something could work, and then try it. Contrast it with vaccines, where, regardless of your view on the covid one, there's an actual plausible causal pathway from being exposed to it to getting immunity, so it's possible and a legit thing to do to run an experiment to see if it works.
    - hutzlibu 4y ago
      "so it's possible and a legit thing to do to run an experiment to see if it works. " I think it is possible and legit scientific to run experiments on allmost anything, no matter how weird. What matters is how you do the experiment and what is the result - does it work? And if it does, is it reproducible? Thats the key difference between a scientific and a esoteric experiment. But you totally can investigate whether divine blessed guano shit cures cancer in a scientific way. Most researchers just won't waste their time with it. Experiments are expensive. This is why most experiments are indeed only conducted, if there is a solid theory about the process and not a shot in the blue. (And another actually sad part today is, that many new if not most scientific papers out there are actually not reproducible anymore (at least not with the data provided), but no one cares or does something about it, except complaining, because there is nothing to win, from redoing an experiment of someone else. Reputation and grants demand new research.)
A4ET8a8uTh0 4y ago
Interesting. With exception of the pandemic, I don't think I encountered that particular view often. If anything, taking medicine into your own hands tends to be a result of quick fix mentality ( which used to be a uniquely American issue ), lack of access to medicine and doctors. I am not one to defend doctors too much as I did have a moment, where a whole series of trained professionals missed something obvious ( in retrospect ) to the point that made me question whether they were all just trying to drain my insurance as much as they could. It is a problem, as we are still learning how our bodies really work. << you need to sometimes tackle your own health That 'sometimes' is important. You want to know the line where supplements and blinds are no longer sufficient.
PragmaticPulp 4y ago
He recognized the signs of sleep apnea and pursued treatment with sleep apnea devices, getting confirmation of the problem with the help of his doctor. The DIY part was largely related to pushing the process forward, not doing novel experimentation. Nobody would call that “anti-science”. Anti-science would be something like ignoring the common treatments and trying to solve the problem with natural supplements or something. Going this route often delays people from getting to proven treatments because they spend a long, long time trying underpowered or unproven things that don’t work.
- Out_of_Characte 4y ago
  On the flipside, there are also a small selection of unproven treatments that work better than standard care.
  - nawgz 4y ago
    ... That's not the flipside, that's the "exception to the rule". Of course the system's not perfect, but people don't live way longer now because our medicine is worse than before...
    - StrictDabbler 4y ago
      "The exception proves the rule" refers to a logical/legal situation where a rule has been posted with specific exceptions. A sign that says "no parking on Sundays" logically implies that parking is allowed all other days. The concept you're looking for is closer to "any statistical group has outlier cases".
      - nawgz 4y ago
        I did not use the word "proves"; the "exception to the rule" fallacy is when you see a singular case violating some rule and you use that to assume the rule doesn't hold in general, or you make generalizations from a singular case. The commenter I'm replying to is advocating for homeo- / naturo-pathy because of some statistically insignificant and probably actually not causally based relationship they've witnessed, which is generalizing from a ~singular case
ifyoubuildit 4y ago
If the two options are wearing a label that you don't like (that the labeler might not even understand) but having your health, or wearing a more desirable label but without your health, the choice seems clear. It's like they say, opinions are like assholes. Everyone's got one and they all stink. At the end of the day, the only one who is really accountable for your health is you.
ianai 4y ago
It could also be labeled “self advocacy” with a light scientific oversight. Ie don’t do the same thing twice and expect different results, and detailed, intricate logs, etc. “Giving a crap” about your health is definitely not anti-science. I’ve routinely had to do this with my own health. It was especially bad before Botox for migraine was around. Heard a lot of “men don’t get migraines, I don’t believe you” from neurologists. For sleep apnea, it was an adverse reaction to a medication that led me to strongly request my doctor send me for a sleep study. Found out during the sleep study that I needed a good bit of air pressure and I’ve been benefiting greatly since. But it did take me doing some online research into side effects of the medication (from high quality sources), being insistent, and establishing some report with my doctor through logs, candor, and listening.
- yosito 4y ago
  I'm sorry, but "don't do the same thing twice and expect different results" is not science at all, and might even be described as anti-science.
- kurthr 4y ago
  I agree and think it's interesting that we find a very similar article about finding a slow electrical leak in a car. Most of the experts are interested in taking the cream off the top of diagnosis, because most of the time you have the common condition that responds to the common treatment. https://news.ycombinator.com/item?id=35513636 https://news.ycombinator.com/item?id=35513636 But when it's not and they have to look at a lot of details and spend a lot of time figuring out the problem many aren't interested, if only because they're pressed for time (by insurers) and trying to reduce cognitive load.
dekhn 4y ago
This isn't science, it's medicine. Many parts of medical diagnosis are not completely scientific. It's also easy for people managing their own health to make mistakes that professionals would not.
- StrictDabbler 4y ago
  Yes, absolutely. It is worth practicing medicine when the treatment is inherently harmless and going through the medical system has been bottlenecked. Nobody is killed (or really harmed) by trying a CPAP and the waiting list for sleep clinics can be months or years long, not to mention the expense. It's one of the rare medical interventions that is relatively safe for an individual. Probably should be otc.
  - LoganDark 4y ago
    > Probably should be otc. Isn't it already, if you can just buy a CPAP machine off the shelf?
    - StrictDabbler 4y ago
      Late reply, but no, legally you cannot buy or sell a CPAP machine without a prescription. It so obviously should be OTC that there's a thriving gray-market.
jrm4 4y ago
Exactly this. I've also dealt with the whole CPAP thing, and the extent to which the whole industry is obviously infantilizing-for-profit is infuriating. Over the years, it's gotten increasingly difficult to just "buy the supplies yourself," (aka easily and/or cheaply) and the extremely condescending "reasoning" we get is "oh, it's medical equipment and therefore dangerous so we get to control it." And here, having done it for years, I can tell you this is nearly absolute BS. It's a hose hooked up to a fan that softly blows somewhat filtered air through a tube. That's IT. There's no remotely signficant way that this thing will hurt you even if used improperly; especially as compared to so much other dangerous OTC drugs and/or medical equipment.
- Enginerrrd 4y ago
  >There's no remotely significant way that this thing will hurt you even if used improperly Eh... I've talked to RT's and the occasional pulmonologist enough about ventilators out of idle curiosity to learn that the pressures involved do need to be carefully set within certain envelopes to minimize risks, and I'm not quite as confident as you are in this statement.
  - meindnoch 4y ago
    Ventilator != CPAP machine
    - Enginerrrd 4y ago
      Oh, I know that! I'm familar with CPAP's and BiPAPs and ventilators, etc. I was a paramedic before I became an engineer. My point was just that, within the context of ventilators, I learned just how little I actually knew about the field of pulmonology and how many things I didn't think would be an issue are actually quite dangerous. What little I picked up would be enough to give me pause about the confident statement made in the comment I responded to about DIY CPAPs.
      - jrm4 4y ago
        I'm considering the relative/marginal danger (e.g. against actual apnea) and I just don't see it? You set your controls HORRIBLY wrong on an off the shelf CPAP -- and, what? It's not like you're going to explode your lungs. Your own inability to breathe properly will make you take it off. Or you keep it on and you fart more in the morning (true story, by the way, I've never heard anyone mention this side effect of CPAPs)
LoganDark 4y ago
I was never diagnosed with ADHD because medical professionals never noticed any symptoms on the outside. But inside, I was always suffering, I just didn't know what it was called. Once I learned about ADHD and that I checked every box, I started taking stimulants (even without an ADHD diagnosis) and they solved everything. I think my case was just so severe that nobody saw me struggle with it, because it was impossible to fight. Plus, I'm autistic, so a lot of things were written off as autism.
- Mezzie 4y ago
  > I think my case was just so severe that nobody saw me struggle with it. Same with me but PTSD. Like the fact that I'm remarkably functional in crisis mode doesn't mean that it's not a problem I live there all the time. A surprising amount of medicine relies on having a stable baseline against which to compare and if that's not there, the tests don't work.
  - LoganDark 4y ago
    > Same with me but PTSD. Like the fact that I'm remarkably functional in crisis mode doesn't mean that it's not a problem I live there all the time. Exactly! I wanna fix something wrong with me, not something preventing me from becoming a work slave. I want to be happy with myself, not just useful to society. My own happiness should trump most metrics of functionality.
    - Mezzie 4y ago
      It's crazy-making, isn't it? I realize in hindsight how much of my resistance to help was resistance to 'help': I've grown up surrounded by adults/authority figures offering 'help' with no consideration of my actual desires or wellbeing. I know that one. Of course I was wary: I had a good reason. You're right that it all relies around making people functional, not whole people who have come to terms with who they are and are a psychologically stable human organism.
      - LoganDark 4y ago
VikingCoder 4y ago
We all need to be our own advocates, in lots of areas. What's concerning is when people ignore the experts completely. Steve Jobs ignoring the advice for pancreatic cancer treatment comes to mind.
bmarquez 4y ago
Absolutely. I was prescribed an APAP with the default pressures set from 4-20. The doctor claimed that the "machine would do all the work" but I still had poor sleep quality. Ended up downloading Sleepyhead (the predecessor to OSCAR) and self-titrated using a band of 90% reported pressure. My sleep improved but my doctor got mad because I wasn't listening to medical advice, but going into the APAP clinician settings and changing them myself.
colordrops 4y ago
It shouldn't be controversial that you should be responsible for your own body and health.
whalesalad 4y ago
Most people are not good debuggers. Medical. Automotive. You gotta do a lot of things yourself these days.
__MatrixMan__ 4y ago
It sounds like they're objecting to your lack of respect for scientific authority. If so, they should read Paul Feyerabend. Science is at its worst when it's coupled with authority.
fnordpiglet 4y ago
Science is but a tool for understanding what works and doesn’t work. It’s neither necessary nor complete for solving any specific problem. I have a few instances where I’ve used science to hack my own problems and it usually works if you are careful and methodical, but my result isn’t scientific and it’s only manifest in a sample of one. I can’t advertise it as a solution for everyone as it’s not science. But it doesn’t mean I’m anti science, rather, this is how theories and hypotheses start - not in a clean room with a pencil and paper extending known science with sterile logic. It’s having an insight that’s a bit crazy but you know enough science to support it, you try it out and holy smokes it works. Then you craft an experiment to prove it didn’t work, some similar well controlled construction. A personal example is I suffered from long covid. I knew that citrulline is a non essential amino acid that is a part of the nitric oxide cycle that is easily digested and metabolized into arginine in the kidneys. It’s got a lot of uses for exercise endurance, erectile dysfunction, but also sickle cell anemia. The popular misconception is the shape of the sickle cells can’t carry oxygen well but that’s false. In fact the symptoms are caused by the shape irritating the cells lining the blood vessels, and arginine is a vasoprotector and vasodilator that’s redirected to help heal the irritation leading to loss of energy systematically. I figured covid attacks and irritates the blood vessels maybe there’s something similar at play. Regardless, by juicing the NO cycle overall blood flow and energy levels increase. I checked with doctors and the body can consume large amounts of citrulline without consequence other than GI discomfort in large amounts. I got a bag of nutricutical grade citrulline from Amazon and within half an hour I felt great for the first time in a year. In a few months of daily dosing feel normal again. Maybe it was luck, maybe a placebo, maybe real. It doesn’t matter - it’s not anti-science, it’s proto-science
Abishek_Muthian 4y ago
I was told my bones were like that of an 80 year old when I was 32, I have severe Osteoporosis and since I already have Achondroplasia doctors here(India) don't even try to find what's causing my bone weakness; "Learn to live with what you've been dealt with" is a literal statement made by a doctor in an expensive hospital. My spine broke, I've undergone various bone related surgeries all my life. I decided to take matter into my own hands and built "Bone Health Tracker"[1] a FOSS bone density results tracker, I went to the front page of r/InternetIsBeautiful subreddit and through which I came across others like me who have suggested various rare diseases which I could be facing. Since then I've been working with NGOs helping those with rare diseases to help me find a doctor who can diagnose my disease and for the first time in my life I'm hopeful that I will be able to find what my disease is soon. [1] https://bonehealthtracker.com/ https://bonehealthtracker.com/

by yosito 4y ago

toss1 4y ago

>>doing so is often labeled as being anti-science, when the truth is, this guy was actually doing the science himself. Yup, it is. Because like a cargo cult, most of the external signs are similar. The difference is in the depth of knowledge used, the rigor applied to the evidence, whether the person is actively avoiding or seeking confirmation bias, etc. So, yes, much of the time, it is actually anti-science. That said, there is no reason to hide a person's own data from them. Even if statistically, they are more likely to abuse it. The fact that he had to go get a gray-market machine hacked to use open-source to get his own data is unconscionable. It should simply be required that all medical devices have an easy method to provide data to the user/patient, such as a Patient_SDCard_Slot, or Patient_USB_port. Obviously it wouldn't provide access to the internals, but provide a parallel output data stream that they could use or not use as they choose.

toss1 4y ago
Edit, meant to type "it sometimes is", not it is (didn't check my writing, too late to edit)

hakunin 4y ago

> It's not anti-science to take your health into your own hands. It depends on how exactly it was taken into one’s hands right? Can’t really know if it’s pro-science or anti-science until you see what a person is doing. Most people do pretty irrational stuff, based on stories of a doctor in my family.

AbrahamParangi 4y ago
Experiments are science, and if we knew how they’d turn out beforehand they wouldn’t be experiments. Sort of definitionally you can get pretty weird or unsafe and if you’re comfortable with it not working it’s still a totally valid experiment.
- ceejayoz 4y ago
  Experiments are potentially science. Not all experiments are done in a scientific manner. (And even then, experimentation is only a part of the scientific process.)
- PragmaticPulp 4y ago
  The article is about someone following what is basically the established diagnostic and treatment flow for sleep apnea. It’s not exactly an experiment. He was pushing the process forward faster than his medical system could, but it wasn’t novel or experimental.
- version_five 4y ago
  No, experiments are really only science in the usual sense if you have an expectation of how they will turn out and you run the experiment to test your hypothesis. And properly constructing the hypothesis, to include past knowledge and some causal mechanism is vitally important, the causal part being often neglected even in "real" science. There was a lot of this during Covid (which I know is a bad example because of it's political baggage, but anyway). Various "x cures / helps with covid" trends (sometimes including studies) but not really based on a anything. It's not really scientific to just imagine something could work, and then try it. Contrast it with vaccines, where, regardless of your view on the covid one, there's an actual plausible causal pathway from being exposed to it to getting immunity, so it's possible and a legit thing to do to run an experiment to see if it works.
  - hutzlibu 4y ago
    "so it's possible and a legit thing to do to run an experiment to see if it works. " I think it is possible and legit scientific to run experiments on allmost anything, no matter how weird. What matters is how you do the experiment and what is the result - does it work? And if it does, is it reproducible? Thats the key difference between a scientific and a esoteric experiment. But you totally can investigate whether divine blessed guano shit cures cancer in a scientific way. Most researchers just won't waste their time with it. Experiments are expensive. This is why most experiments are indeed only conducted, if there is a solid theory about the process and not a shot in the blue. (And another actually sad part today is, that many new if not most scientific papers out there are actually not reproducible anymore (at least not with the data provided), but no one cares or does something about it, except complaining, because there is nothing to win, from redoing an experiment of someone else. Reputation and grants demand new research.)

A4ET8a8uTh0 4y ago

Interesting. With exception of the pandemic, I don't think I encountered that particular view often. If anything, taking medicine into your own hands tends to be a result of quick fix mentality ( which used to be a uniquely American issue ), lack of access to medicine and doctors. I am not one to defend doctors too much as I did have a moment, where a whole series of trained professionals missed something obvious ( in retrospect ) to the point that made me question whether they were all just trying to drain my insurance as much as they could. It is a problem, as we are still learning how our bodies really work. << you need to sometimes tackle your own health That 'sometimes' is important. You want to know the line where supplements and blinds are no longer sufficient.

PragmaticPulp 4y ago

He recognized the signs of sleep apnea and pursued treatment with sleep apnea devices, getting confirmation of the problem with the help of his doctor. The DIY part was largely related to pushing the process forward, not doing novel experimentation. Nobody would call that “anti-science”. Anti-science would be something like ignoring the common treatments and trying to solve the problem with natural supplements or something. Going this route often delays people from getting to proven treatments because they spend a long, long time trying underpowered or unproven things that don’t work.

Out_of_Characte 4y ago
On the flipside, there are also a small selection of unproven treatments that work better than standard care.
- nawgz 4y ago
  ... That's not the flipside, that's the "exception to the rule". Of course the system's not perfect, but people don't live way longer now because our medicine is worse than before...
  - StrictDabbler 4y ago
    "The exception proves the rule" refers to a logical/legal situation where a rule has been posted with specific exceptions. A sign that says "no parking on Sundays" logically implies that parking is allowed all other days. The concept you're looking for is closer to "any statistical group has outlier cases".
    - nawgz 4y ago
      I did not use the word "proves"; the "exception to the rule" fallacy is when you see a singular case violating some rule and you use that to assume the rule doesn't hold in general, or you make generalizations from a singular case. The commenter I'm replying to is advocating for homeo- / naturo-pathy because of some statistically insignificant and probably actually not causally based relationship they've witnessed, which is generalizing from a ~singular case

ifyoubuildit 4y ago

If the two options are wearing a label that you don't like (that the labeler might not even understand) but having your health, or wearing a more desirable label but without your health, the choice seems clear. It's like they say, opinions are like assholes. Everyone's got one and they all stink. At the end of the day, the only one who is really accountable for your health is you.

ianai 4y ago

It could also be labeled “self advocacy” with a light scientific oversight. Ie don’t do the same thing twice and expect different results, and detailed, intricate logs, etc. “Giving a crap” about your health is definitely not anti-science. I’ve routinely had to do this with my own health. It was especially bad before Botox for migraine was around. Heard a lot of “men don’t get migraines, I don’t believe you” from neurologists. For sleep apnea, it was an adverse reaction to a medication that led me to strongly request my doctor send me for a sleep study. Found out during the sleep study that I needed a good bit of air pressure and I’ve been benefiting greatly since. But it did take me doing some online research into side effects of the medication (from high quality sources), being insistent, and establishing some report with my doctor through logs, candor, and listening.

yosito 4y ago
I'm sorry, but "don't do the same thing twice and expect different results" is not science at all, and might even be described as anti-science.
kurthr 4y ago
I agree and think it's interesting that we find a very similar article about finding a slow electrical leak in a car. Most of the experts are interested in taking the cream off the top of diagnosis, because most of the time you have the common condition that responds to the common treatment. https://news.ycombinator.com/item?id=35513636 https://news.ycombinator.com/item?id=35513636 But when it's not and they have to look at a lot of details and spend a lot of time figuring out the problem many aren't interested, if only because they're pressed for time (by insurers) and trying to reduce cognitive load.

dekhn 4y ago

This isn't science, it's medicine. Many parts of medical diagnosis are not completely scientific. It's also easy for people managing their own health to make mistakes that professionals would not.

StrictDabbler 4y ago
Yes, absolutely. It is worth practicing medicine when the treatment is inherently harmless and going through the medical system has been bottlenecked. Nobody is killed (or really harmed) by trying a CPAP and the waiting list for sleep clinics can be months or years long, not to mention the expense. It's one of the rare medical interventions that is relatively safe for an individual. Probably should be otc.
- LoganDark 4y ago
  > Probably should be otc. Isn't it already, if you can just buy a CPAP machine off the shelf?
  - StrictDabbler 4y ago
    Late reply, but no, legally you cannot buy or sell a CPAP machine without a prescription. It so obviously should be OTC that there's a thriving gray-market.

jrm4 4y ago

Exactly this. I've also dealt with the whole CPAP thing, and the extent to which the whole industry is obviously infantilizing-for-profit is infuriating. Over the years, it's gotten increasingly difficult to just "buy the supplies yourself," (aka easily and/or cheaply) and the extremely condescending "reasoning" we get is "oh, it's medical equipment and therefore dangerous so we get to control it." And here, having done it for years, I can tell you this is nearly absolute BS. It's a hose hooked up to a fan that softly blows somewhat filtered air through a tube. That's IT. There's no remotely signficant way that this thing will hurt you even if used improperly; especially as compared to so much other dangerous OTC drugs and/or medical equipment.

Enginerrrd 4y ago
>There's no remotely significant way that this thing will hurt you even if used improperly Eh... I've talked to RT's and the occasional pulmonologist enough about ventilators out of idle curiosity to learn that the pressures involved do need to be carefully set within certain envelopes to minimize risks, and I'm not quite as confident as you are in this statement.
- meindnoch 4y ago
  Ventilator != CPAP machine
  - Enginerrrd 4y ago
    Oh, I know that! I'm familar with CPAP's and BiPAPs and ventilators, etc. I was a paramedic before I became an engineer. My point was just that, within the context of ventilators, I learned just how little I actually knew about the field of pulmonology and how many things I didn't think would be an issue are actually quite dangerous. What little I picked up would be enough to give me pause about the confident statement made in the comment I responded to about DIY CPAPs.
    - jrm4 4y ago
      I'm considering the relative/marginal danger (e.g. against actual apnea) and I just don't see it? You set your controls HORRIBLY wrong on an off the shelf CPAP -- and, what? It's not like you're going to explode your lungs. Your own inability to breathe properly will make you take it off. Or you keep it on and you fart more in the morning (true story, by the way, I've never heard anyone mention this side effect of CPAPs)

LoganDark 4y ago

I was never diagnosed with ADHD because medical professionals never noticed any symptoms on the outside. But inside, I was always suffering, I just didn't know what it was called. Once I learned about ADHD and that I checked every box, I started taking stimulants (even without an ADHD diagnosis) and they solved everything. I think my case was just so severe that nobody saw me struggle with it, because it was impossible to fight. Plus, I'm autistic, so a lot of things were written off as autism.

Mezzie 4y ago
> I think my case was just so severe that nobody saw me struggle with it. Same with me but PTSD. Like the fact that I'm remarkably functional in crisis mode doesn't mean that it's not a problem I live there all the time. A surprising amount of medicine relies on having a stable baseline against which to compare and if that's not there, the tests don't work.
- LoganDark 4y ago
  > Same with me but PTSD. Like the fact that I'm remarkably functional in crisis mode doesn't mean that it's not a problem I live there all the time. Exactly! I wanna fix something wrong with me, not something preventing me from becoming a work slave. I want to be happy with myself, not just useful to society. My own happiness should trump most metrics of functionality.
  - Mezzie 4y ago
    It's crazy-making, isn't it? I realize in hindsight how much of my resistance to help was resistance to 'help': I've grown up surrounded by adults/authority figures offering 'help' with no consideration of my actual desires or wellbeing. I know that one. Of course I was wary: I had a good reason. You're right that it all relies around making people functional, not whole people who have come to terms with who they are and are a psychologically stable human organism.
    - LoganDark 4y ago

VikingCoder 4y ago

We all need to be our own advocates, in lots of areas. What's concerning is when people ignore the experts completely. Steve Jobs ignoring the advice for pancreatic cancer treatment comes to mind.

bmarquez 4y ago

Absolutely. I was prescribed an APAP with the default pressures set from 4-20. The doctor claimed that the "machine would do all the work" but I still had poor sleep quality. Ended up downloading Sleepyhead (the predecessor to OSCAR) and self-titrated using a band of 90% reported pressure. My sleep improved but my doctor got mad because I wasn't listening to medical advice, but going into the APAP clinician settings and changing them myself.

colordrops 4y ago

It shouldn't be controversial that you should be responsible for your own body and health.

whalesalad 4y ago

Most people are not good debuggers. Medical. Automotive. You gotta do a lot of things yourself these days.

__MatrixMan__ 4y ago

It sounds like they're objecting to your lack of respect for scientific authority. If so, they should read Paul Feyerabend. Science is at its worst when it's coupled with authority.

fnordpiglet 4y ago

Science is but a tool for understanding what works and doesn’t work. It’s neither necessary nor complete for solving any specific problem. I have a few instances where I’ve used science to hack my own problems and it usually works if you are careful and methodical, but my result isn’t scientific and it’s only manifest in a sample of one. I can’t advertise it as a solution for everyone as it’s not science. But it doesn’t mean I’m anti science, rather, this is how theories and hypotheses start - not in a clean room with a pencil and paper extending known science with sterile logic. It’s having an insight that’s a bit crazy but you know enough science to support it, you try it out and holy smokes it works. Then you craft an experiment to prove it didn’t work, some similar well controlled construction. A personal example is I suffered from long covid. I knew that citrulline is a non essential amino acid that is a part of the nitric oxide cycle that is easily digested and metabolized into arginine in the kidneys. It’s got a lot of uses for exercise endurance, erectile dysfunction, but also sickle cell anemia. The popular misconception is the shape of the sickle cells can’t carry oxygen well but that’s false. In fact the symptoms are caused by the shape irritating the cells lining the blood vessels, and arginine is a vasoprotector and vasodilator that’s redirected to help heal the irritation leading to loss of energy systematically. I figured covid attacks and irritates the blood vessels maybe there’s something similar at play. Regardless, by juicing the NO cycle overall blood flow and energy levels increase. I checked with doctors and the body can consume large amounts of citrulline without consequence other than GI discomfort in large amounts. I got a bag of nutricutical grade citrulline from Amazon and within half an hour I felt great for the first time in a year. In a few months of daily dosing feel normal again. Maybe it was luck, maybe a placebo, maybe real. It doesn’t matter - it’s not anti-science, it’s proto-science

Abishek_Muthian 4y ago

I was told my bones were like that of an 80 year old when I was 32, I have severe Osteoporosis and since I already have Achondroplasia doctors here(India) don't even try to find what's causing my bone weakness; "Learn to live with what you've been dealt with" is a literal statement made by a doctor in an expensive hospital. My spine broke, I've undergone various bone related surgeries all my life. I decided to take matter into my own hands and built "Bone Health Tracker"[1] a FOSS bone density results tracker, I went to the front page of r/InternetIsBeautiful subreddit and through which I came across others like me who have suggested various rare diseases which I could be facing. Since then I've been working with NGOs helping those with rare diseases to help me find a doctor who can diagnose my disease and for the first time in my life I'm hopeful that I will be able to find what my disease is soon. [1] https://bonehealthtracker.com/ https://bonehealthtracker.com/