4 ms·

What is sad about what conventional medicine has to offer?

by reason 16y ago

Mz 16y ago
If you read his comments, he has been battling cancer for 6 years. He has apparently had multiple surgeries. He is stopping the medication so he can have a "lucid ending" and spend some quality time with family and friends. He has been tortured by chemo. He plans on having jello as his last meal so he doesn't "mess" himself again. I have cystic fibrosis. I've gotten off of 8 or so prescription drugs. The drug side effects were crippling. I was miserable and unemployable. My sister has been battling cancer for 11 years or more. I belong to email lists for people with CF. I've heard lots of stories like this. What conventional medicine does is pretty gruesome. I am getting well. I only wish I could more effectively share that information. BTDT, got the t-shirt and it saddens me that so many people are doomed to the same fate as Lucidending. Edit: I would be seriously interested in knowing why this is being downvoted. There is something wrong with finding a better way and wishing to share it and thinking it sucks that other people are suffering so horribly?
- reason 16y ago
  "What conventional medicine does is pretty gruesome." What are you talking about? Chances are you would've died a century ago because of the lack of effective treatments for CF. There are people who have dedicated their entire lives to researching the genetic mechanisms that lead to CF, not to mention the efforts being led to better understand those behind cancer. I think you need to give conventional medicine some credit.
  - Mz 16y ago
    I do give conventional medicine some credit for keeping me alive. But if I continued pursuing conventional treatments, I would be a life-long legal drug addict and too ill to work. My life would suck in quite a lot of ways. Conventional medicine keeps people alive. But at quite a high cost, a cost that makes many people -- like Lucidending and, at one time, me -- feel that death would be preferable. Anyway, probably not a good idea to do an AMAA if this is the reception my comments get here, where I am already a member and speak pretty openly about having gotten myself well. Peace.
    - deleted 16y ago
      [deleted]
      - Mz 16y ago
        EDIT: The deleted post asked what I thought about assisted suicide. I don't know why it was deleted. It seemed like a perfectly reasonable question to me. So I am leaving my reply, for better or worse. -------------- It is not anything I have come up with some "position" on. I know I wanted to die ten years ago and saw that as the only hope of an end to my suffering. I know that I continue to routinely feel like "god must hate me" and feel like death is the only way out -- that getting well, paying my bills and all that is just too much for one person to do without real support. It feels really, really unfair. I could get rewarded and supported for not getting well -- I could get free medical care, go on disability as I get too sick to work, etc. But getting well? Up yours, bitch. You're crazy and made this entire thing up anyway. Forget any kind of financial support for the costs involved. There isn't even sympathy in most circles. So my life is still hard. And has always been hard. Living without a diagnosis and being routinely accused of being a hypochondriac was also hard. And I did attempt suicide at age 17. But what I believe is this: They now have such an ability to keep you technically "alive" that our definitions have to change and right to die legislation and discussions like this one are inevitably going to be part of the struggle to come up with some meaningful, humane means to decide it is okay for someone to just stop pursuing heroic efforts and, if nothing else, let nature take its course. My "position", if I have one at all in this debate, is to offer information on a more humane alternative that offers better quality of life rather than merely extending life but at the cost of so much suffering that many people would rather die instead. The only possible alternative that makes sense to me is to make it a priority to make medical care more humane so that staying alive doesn't so completely destroy your quality of life as to make one desperately wish for death. A few years ago, a relative was in the hospital in a critical care unit. A very old, very ill person (like in their 80's) on the same ward coded over and over. They spent two weeks resuscitating this person and performing gruesome invasive procedures -- because the family wasn't ready to let go. This person was not ever going to get better and go home again. Everyone knew that. The family knew that. The staff knew that. They did not prolong her life. They only prolonged her death. And her suffering. We have no choice but to wrestle with such questions given where medical technology has brought us. Otherwise we are in danger of coming to a point where everyone gets put on an iron lung or some such and we just don't bury you.
- alex_c 16y ago
  I'm assuming you were downvoted for the vague swipe at "traditional medicine". It can be a touchy subject, because of the large number of crackpots, "vaccines cause autism", etc. To be clear, I suspect no HN readers will claim medicine has all the answers - far from it. I suspect the reaction is more to the false dichotomy between "traditional medicine" and "some other kind of medicine" (with the implied hints of conspiracy or willful incompetence), rather than "current medical knowledge" and "future medical knowledge". I took a look at your site, and it's obvious you've been through a lot, and thought about it more than most people - so please take my comment only in the context it's meant: as an attempt at an explanation why your one specific post was downvoted (and not an endorsement of the downvote).
  - Mz 16y ago
    Thank you for the feedback. I routinely struggle with how to talk about offering a better solution. Most folks get all up in arms, like it is an attack, and then just do not listen to what I am really trying to say. Sigh. Have an upvote.
    - alex_c 16y ago
      Very understandable - the problem is that it's tough, based on a brief post, to judge whether someone is an "alternative medicine" nut, with all the negative baggage that can imply, or someone with genuinely unique insights and experiences (hell, it's tough to judge in general, when dealing with things that are both emotional and not well understood).
      - Mz 16y ago
        It doesn't help that I frequently sound like Elle Woods (a la the scene in Legally Blonde that goes something like this: "He's gay. -- what kind of shoes do I have on?" ..."Uh, black?"..."See, he's gay.") But I don't have a good solution for that because I find that if I try to preemptively explain at length, that gets even worse reactions. :-/
- Luc 16y ago
  Sooo... you think Lucidending is sick from side effects, and thoughts of suicide will leave him once he stops taking these awful drugs? Perhaps his or her situation is not as parallel to yours as you think. It's hard to say based on the little data there is, but perhaps all that is left for him or her is palliative care.
  - Mz 16y ago
    I said no such thing and I have no idea where you are getting that idea. Given that cancer has spread to his brain and the hell he has clearly been through, I understand his choice. I've been in a similar situation. However, it just so happens that my efforts to stop the pain -- which conventional drugs were not effectively treating -- began killing the underlying infection. I was really quite annoyed when I realized that because it meant I would live and the recovery would be both long and hard. That was about 10 years ago. The recovery has, in fact, been long and hard -- 10 years and counting and in recent months it has been common for me to throw up all day one day a week, so "hard" is an understatement. But unlike with conventional treatments -- where my doctor literally told me "People like you don't get well. Symptom management is the name of the game." -- what I am going through now actually is getting me well. I wouldn't wish what I am going through on my worst enemy. But it beats the hell out of conventional treatments for my condition. It both involves less suffering and actually is getting me well. It is hands down a better experience and a better outcome.
    - forensic 16y ago
      Why doesn't conventional medicine recognize your form of treatment? What exactly is your form of treatment anyway? Just letting the body do its thing?
      - Mz 16y ago
        Why doesn't conventional medicine recognize your form of treatment? Because it was invented by some former homemaker with credentials like "I gave up my national merit scholarship and dropped out of college to go do the wife and mom thing for two decades. Now I'm a poverty stricken divorcee who has no clue how I am going to pay my electric bill this month before they cut my power off." Not exactly the kind of credentials that get you written up in JAMA. What exactly is your form of treatment anyway? There is a little info here about what I've done (though please note the site is woefully out of date as the last 10 months have been extremely intense): http://healthgazelle.com/ http://healthgazelle.com/ Just letting the body do its thing? Are you kidding? That leads to a gruesome death of the sort that motivates people to put up with the horrors of conventional medicine. Getting well has involved a great deal of research and work and other resources, mostly to redress 36 years of not getting appropriate treatment because I was diagnosed late in life. The most succinct explanation I have come up with is on this page: http://healthgazelle.com/rootsoftheproblem.shtml http://healthgazelle.com/rootsoftheproblem.shtml Oh and have an upvote for asking good questions.
Swannie 16y ago
I think Mz is trying to make the point that conventional /wisdom/ in modern medicine, is primarily to prolong life, and does so in preference to giving quality of life.
- reason 16y ago
  Clearly not as her response complains about the side effects taking cystic fibrosis treatment, and nowhere did she mention how she would've rather died than had the disease treated. Edit: Yep, missed that part. I was wrong there.
  - Swannie 16y ago
    "my whole goal was to just hurt less. Suicide would have been gladly welcomed"
  - Mz 16y ago
    and nowhere did she mention how she would've rather died than had the disease treated. Maybe you missed this part of my post: ...I got well in part because I stopped trying to live. At one time, my whole goal was to just hurt less. Suicide would have been gladly welcomed, so I understand why one would do that.

What is sad about what conventional medicine has to offer?

by reason 16y ago

What is sad about what conventional medicine has to offer?

Mz 16y ago

If you read his comments, he has been battling cancer for 6 years. He has apparently had multiple surgeries. He is stopping the medication so he can have a "lucid ending" and spend some quality time with family and friends. He has been tortured by chemo. He plans on having jello as his last meal so he doesn't "mess" himself again. I have cystic fibrosis. I've gotten off of 8 or so prescription drugs. The drug side effects were crippling. I was miserable and unemployable. My sister has been battling cancer for 11 years or more. I belong to email lists for people with CF. I've heard lots of stories like this. What conventional medicine does is pretty gruesome. I am getting well. I only wish I could more effectively share that information. BTDT, got the t-shirt and it saddens me that so many people are doomed to the same fate as Lucidending. Edit: I would be seriously interested in knowing why this is being downvoted. There is something wrong with finding a better way and wishing to share it and thinking it sucks that other people are suffering so horribly?

reason 16y ago
"What conventional medicine does is pretty gruesome." What are you talking about? Chances are you would've died a century ago because of the lack of effective treatments for CF. There are people who have dedicated their entire lives to researching the genetic mechanisms that lead to CF, not to mention the efforts being led to better understand those behind cancer. I think you need to give conventional medicine some credit.
- Mz 16y ago
  I do give conventional medicine some credit for keeping me alive. But if I continued pursuing conventional treatments, I would be a life-long legal drug addict and too ill to work. My life would suck in quite a lot of ways. Conventional medicine keeps people alive. But at quite a high cost, a cost that makes many people -- like Lucidending and, at one time, me -- feel that death would be preferable. Anyway, probably not a good idea to do an AMAA if this is the reception my comments get here, where I am already a member and speak pretty openly about having gotten myself well. Peace.
  - deleted 16y ago
    [deleted]
    - Mz 16y ago
      EDIT: The deleted post asked what I thought about assisted suicide. I don't know why it was deleted. It seemed like a perfectly reasonable question to me. So I am leaving my reply, for better or worse. -------------- It is not anything I have come up with some "position" on. I know I wanted to die ten years ago and saw that as the only hope of an end to my suffering. I know that I continue to routinely feel like "god must hate me" and feel like death is the only way out -- that getting well, paying my bills and all that is just too much for one person to do without real support. It feels really, really unfair. I could get rewarded and supported for not getting well -- I could get free medical care, go on disability as I get too sick to work, etc. But getting well? Up yours, bitch. You're crazy and made this entire thing up anyway. Forget any kind of financial support for the costs involved. There isn't even sympathy in most circles. So my life is still hard. And has always been hard. Living without a diagnosis and being routinely accused of being a hypochondriac was also hard. And I did attempt suicide at age 17. But what I believe is this: They now have such an ability to keep you technically "alive" that our definitions have to change and right to die legislation and discussions like this one are inevitably going to be part of the struggle to come up with some meaningful, humane means to decide it is okay for someone to just stop pursuing heroic efforts and, if nothing else, let nature take its course. My "position", if I have one at all in this debate, is to offer information on a more humane alternative that offers better quality of life rather than merely extending life but at the cost of so much suffering that many people would rather die instead. The only possible alternative that makes sense to me is to make it a priority to make medical care more humane so that staying alive doesn't so completely destroy your quality of life as to make one desperately wish for death. A few years ago, a relative was in the hospital in a critical care unit. A very old, very ill person (like in their 80's) on the same ward coded over and over. They spent two weeks resuscitating this person and performing gruesome invasive procedures -- because the family wasn't ready to let go. This person was not ever going to get better and go home again. Everyone knew that. The family knew that. The staff knew that. They did not prolong her life. They only prolonged her death. And her suffering. We have no choice but to wrestle with such questions given where medical technology has brought us. Otherwise we are in danger of coming to a point where everyone gets put on an iron lung or some such and we just don't bury you.
alex_c 16y ago
I'm assuming you were downvoted for the vague swipe at "traditional medicine". It can be a touchy subject, because of the large number of crackpots, "vaccines cause autism", etc. To be clear, I suspect no HN readers will claim medicine has all the answers - far from it. I suspect the reaction is more to the false dichotomy between "traditional medicine" and "some other kind of medicine" (with the implied hints of conspiracy or willful incompetence), rather than "current medical knowledge" and "future medical knowledge". I took a look at your site, and it's obvious you've been through a lot, and thought about it more than most people - so please take my comment only in the context it's meant: as an attempt at an explanation why your one specific post was downvoted (and not an endorsement of the downvote).
- Mz 16y ago
  Thank you for the feedback. I routinely struggle with how to talk about offering a better solution. Most folks get all up in arms, like it is an attack, and then just do not listen to what I am really trying to say. Sigh. Have an upvote.
  - alex_c 16y ago
    Very understandable - the problem is that it's tough, based on a brief post, to judge whether someone is an "alternative medicine" nut, with all the negative baggage that can imply, or someone with genuinely unique insights and experiences (hell, it's tough to judge in general, when dealing with things that are both emotional and not well understood).
    - Mz 16y ago
      It doesn't help that I frequently sound like Elle Woods (a la the scene in Legally Blonde that goes something like this: "He's gay. -- what kind of shoes do I have on?" ..."Uh, black?"..."See, he's gay.") But I don't have a good solution for that because I find that if I try to preemptively explain at length, that gets even worse reactions. :-/
Luc 16y ago
Sooo... you think Lucidending is sick from side effects, and thoughts of suicide will leave him once he stops taking these awful drugs? Perhaps his or her situation is not as parallel to yours as you think. It's hard to say based on the little data there is, but perhaps all that is left for him or her is palliative care.
- Mz 16y ago
  I said no such thing and I have no idea where you are getting that idea. Given that cancer has spread to his brain and the hell he has clearly been through, I understand his choice. I've been in a similar situation. However, it just so happens that my efforts to stop the pain -- which conventional drugs were not effectively treating -- began killing the underlying infection. I was really quite annoyed when I realized that because it meant I would live and the recovery would be both long and hard. That was about 10 years ago. The recovery has, in fact, been long and hard -- 10 years and counting and in recent months it has been common for me to throw up all day one day a week, so "hard" is an understatement. But unlike with conventional treatments -- where my doctor literally told me "People like you don't get well. Symptom management is the name of the game." -- what I am going through now actually is getting me well. I wouldn't wish what I am going through on my worst enemy. But it beats the hell out of conventional treatments for my condition. It both involves less suffering and actually is getting me well. It is hands down a better experience and a better outcome.
  - forensic 16y ago
    Why doesn't conventional medicine recognize your form of treatment? What exactly is your form of treatment anyway? Just letting the body do its thing?
    - Mz 16y ago
      Why doesn't conventional medicine recognize your form of treatment? Because it was invented by some former homemaker with credentials like "I gave up my national merit scholarship and dropped out of college to go do the wife and mom thing for two decades. Now I'm a poverty stricken divorcee who has no clue how I am going to pay my electric bill this month before they cut my power off." Not exactly the kind of credentials that get you written up in JAMA. What exactly is your form of treatment anyway? There is a little info here about what I've done (though please note the site is woefully out of date as the last 10 months have been extremely intense): http://healthgazelle.com/ http://healthgazelle.com/ Just letting the body do its thing? Are you kidding? That leads to a gruesome death of the sort that motivates people to put up with the horrors of conventional medicine. Getting well has involved a great deal of research and work and other resources, mostly to redress 36 years of not getting appropriate treatment because I was diagnosed late in life. The most succinct explanation I have come up with is on this page: http://healthgazelle.com/rootsoftheproblem.shtml http://healthgazelle.com/rootsoftheproblem.shtml Oh and have an upvote for asking good questions.

Swannie 16y ago

I think Mz is trying to make the point that conventional /wisdom/ in modern medicine, is primarily to prolong life, and does so in preference to giving quality of life.

reason 16y ago
Clearly not as her response complains about the side effects taking cystic fibrosis treatment, and nowhere did she mention how she would've rather died than had the disease treated. Edit: Yep, missed that part. I was wrong there.
- Swannie 16y ago
  "my whole goal was to just hurt less. Suicide would have been gladly welcomed"
- Mz 16y ago
  and nowhere did she mention how she would've rather died than had the disease treated. Maybe you missed this part of my post: ...I got well in part because I stopped trying to live. At one time, my whole goal was to just hurt less. Suicide would have been gladly welcomed, so I understand why one would do that.