![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 18 to 42 of 42. Go back in thread:
Posted by Dinah on June 11, 2005, at 22:18:30
In reply to Re: Lou's request to the administration, posted by so on June 11, 2005, at 20:49:29
My main concern is that this conversation seems to be linking a chronic and generally controllable condition with death and mortality.
Could we please quit that?
Posted by Phillipa on June 11, 2005, at 22:28:31
In reply to Well, that's not my main concern, posted by Dinah on June 11, 2005, at 22:18:30
Absolutely! Fondly, Phillipa
Posted by Lou Pilder on June 12, 2005, at 6:39:53
In reply to Well, that's not my main concern, posted by Dinah on June 11, 2005, at 22:18:30
> My main concern is that this conversation seems to be linking a chronic and generally controllable condition with death and mortality.
>
> Could we please quit that?
Dinah,
Are you referring to what I have posted in your post above? If so, is it not that I posted that Lupus is a {potentially} fatal disease?
But in your post, you write,[..my..concern...linking a controllable condition with death...]. Are you saying that people do not die from lupus? If so, could you look at the following links reporting of people that died from lupus?
You write,[...can we quit that...?] Are you saying that I can not post that there are people that die from lupus and that there is the potential for that disease to be fatal?
Lou
http://www.nndb.com/people/095/000049945/
http://www.nndb.com/people/414/000044282/
http://www.nndb.com/people/568/000051415/
>
Posted by Dinah on June 12, 2005, at 7:03:26
In reply to Lou's response to Dinah's post- » Dinah, posted by Lou Pilder on June 12, 2005, at 6:39:53
Lou, I am asking in the name of compassion and charity that we do not dwell on the negatives in any illness we are not personally facing either personally or in a loved one, and are discussing it in that context. The people who are facing it have doctors, and ready access to the internet. In this case, as with diabetes which I have more comfort discussing as I actually have it, the statistics are overwhelmingly positive. But sometimes it's easy to overlook the statistics and dwell on the negatives, especially if it is directly in front of us in a place we probably weren't expecting it.
We could choose to think about worst case scenarios or we could choose to discuss the overwhelmingly positive numbers of people who live a full lifespan with this condition.
You may of course choose to do either.
I think dwelling on the worst case scenarios is a right earned by those who are actually experiencing something.
So that if I, for example, want to moan about the possibilities of diabetes many of which I know very well, it would be venting and sharing of my fears. But if you were to tell me that many people die of complications of diabetes, especially not in the context of trying to intervene in what you see is self destructive behavior... Well, would you wish to do that to me if I were trying to focus on the many people who do not?
Again, it is your choice.
However, I will not engage in further discussion about it with you on board in any but the most positive terms, because further discussion with you has already brought up another link to fatalities, and I do not wish to see that continue. You can continue it without me, of course. But if you want me to discuss this matter, you can email me.
Posted by Lou Pilder on June 12, 2005, at 8:31:39
In reply to Re: Lou's response to Dinah's post- » Lou Pilder, posted by Dinah on June 12, 2005, at 7:03:26
> Lou, I am asking in the name of compassion and charity that we do not dwell on the negatives in any illness we are not personally facing either personally or in a loved one, and are discussing it in that context. The people who are facing it have doctors, and ready access to the internet. In this case, as with diabetes which I have more comfort discussing as I actually have it, the statistics are overwhelmingly positive. But sometimes it's easy to overlook the statistics and dwell on the negatives, especially if it is directly in front of us in a place we probably weren't expecting it.
>
> We could choose to think about worst case scenarios or we could choose to discuss the overwhelmingly positive numbers of people who live a full lifespan with this condition.
>
> You may of course choose to do either.
>
> I think dwelling on the worst case scenarios is a right earned by those who are actually experiencing something.
>
> So that if I, for example, want to moan about the possibilities of diabetes many of which I know very well, it would be venting and sharing of my fears. But if you were to tell me that many people die of complications of diabetes, especially not in the context of trying to intervene in what you see is self destructive behavior... Well, would you wish to do that to me if I were trying to focus on the many people who do not?
>
> Again, it is your choice.
>
> However, I will not engage in further discussion about it with you on board in any but the most positive terms, because further discussion with you has already brought up another link to fatalities, and I do not wish to see that continue. You can continue it without me, of course. But if you want me to discuss this matter, you can email me.Dinah,
You wrote in your post above that you would not discuss{it} with me. Is the {it} only about lupus in referrence to your preference?
If so, then the following is not about your preferrence as to what you want to read or discuss, but as to what you have written here concerning me.
You wrote,[...in the name of compassion and charity thaat we do not dwell on the negatives in any illness...].
Are you saying that {I} am {dwelling} on what you say? It is not my intention to dwell on what you say, for I have presented links in response to your post and other's posts. Are you saying that I am not a commpassionate person, for any reason, including because of my administrative request and my posting of links in response to what you and others have written?
The original thread about this is about Dr.Hsiung's code guidline that states,[...Please,...don't joke about death...]. he original poster wrote that the father was given 3-6 months and that there is a diagnosis of lupus.
Both of those statement IMO have the {potential} to mean that 1)that the father will die in 3-6 months and,2), that lupus has the potential to be fatal and there were statements that I think could have the potential to be [...joking about death...] and I had the concern to know if it is acceptable or not in relation to that guidline here for those statements.
I do not understand why those statements are not addressed as falling in the catagory of [...Please,...don't joke about death...]. There are statements by you here that IMO have the potential to lead others to think that lupus does not have the potential to be fatal for you have written that [...My main concern...linking a chronic and... controllable condition with death...].[...quit that...]. Could you rephrase that so that you include that lupus has the potential to be fatal so that the reader could have the opportunity to know from what you wrote that there is the potential for lupus to be fatal?
My concern is that there is the potential for lupus to be fatal and that goes to the administrative concern of mine that the guidline could or could not make the statements in question acceptable. But even without that, the statement ,[...father given 3-6 months...] is there and i think that unless there is a disclaimer to the contrary, that the statement has the potential to mean that the father will die in 3-6 months. I can not see anythinh humorous about that and I can not understand Dr. Hsiung's postion on this. If they are acceptable, then what does the guidline by Dr. Hsiung mean?
I wonder what would have happened if Dr. Hsiung addressed the statements in question that I think have the potential to be joking about death as being unacceptable.
Some one wrote, [...,but rather application and means of conforming with a guidline at this site that reads, "Please,...don't joke about death."...].
I feel that since my posts are on the administrrative board that they deserve the same consideration as any other administartive discussion and that others, not write things that in any way have the potential to have others have the potential to think that what I am writing is in some way not to be written here. You write [...a right earned by those ...experiancing....]. Are you saying that {only} if I had lupus that it would be OK that I could post the links that were in response to what you and others wrote? If so, then could that mean that others could write posts of the nature that you and others here have in relation to our discussion and I would in some way , doing something unacceptable to reply to them with links that could show clarification to what they wrote, even to me?
I am requesting to you that you write a reply to me about my questions to you about your use of "dwell" and "compasionate" in the opening of your post to me for I feel that I need more infomation from you about what you mean in order to make a determination as to if your statements have the potential for others to have the potential to think that the statements could accuse me or put me down.
Lou
Posted by Dinah on June 12, 2005, at 9:06:25
In reply to Lou's response to Dinah's post-:B » Dinah, posted by Lou Pilder on June 12, 2005, at 8:31:39
I'm sorry I made any posts on this thread at all. Nothing I ever say on Admin makes the slightest bit of difference to anybody at all. I really need to learn to truly accept my powerlessness in the face of Admin. Please just ignore my prior two posts and carry on as if I had never spoken.
I sincerely regret any distress I have caused you. And I do mean that. It was never my intention.
Posted by Minnie-Haha on June 12, 2005, at 14:13:05
In reply to Re: Lou's response to Dinah's post-:B » Lou Pilder, posted by Dinah on June 12, 2005, at 9:06:25
> I'm sorry I made any posts on this thread at all. Nothing I ever say on Admin makes the slightest bit of difference to anybody at all. I really need to learn to truly accept my powerlessness in the face of Admin. Please just ignore my prior two posts and carry on as if I had never spoken...
If it makes any difference, I agreed with what you said about your main concern with this thread. I hope you wrote what you did in the heat of the moment, and that you don't really believe that *nothing* you say here ever makes a *bit* of difference to *anybody* at all! I'm sorry, dear, but I think one could find plenty of evidence to the contrary. :-) For goodness sake, you're a deputy! Plus you've been here a long time and are well-respected by many. (I can't speak for everyone.) Isn't it more like there are some issues that you feel powerless about lately? (I know I've felt that way!)
Posted by Phillipa on June 12, 2005, at 16:42:49
In reply to Re: Making a difference » Dinah, posted by Minnie-Haha on June 12, 2005, at 14:13:05
Back to the original post on the Faith Board. The poster has often referred to her Father as "Lazarus". He has so far beaten the odds when he was supposed to leave this earth and left the hospital and gone home. So for him the 3-6months is thankfully becoming much longer. Fondly, Phillipa
Posted by messadivoce on June 12, 2005, at 17:03:49
In reply to Well, that's not my main concern, posted by Dinah on June 11, 2005, at 22:18:30
Lou, I know you want to be clear on the rules of this site, which at times are not clear and a little hairy. I appreciate that. But Dinah has requested that you not link posts discussing lupus mortality rates to Babble. Even though it may be within your technical right to do so, is it possible that you could refrain from doing so just because it bothers Dinah and others?
The primary purpose of this site is "support" (notice it is mentioned before "education", I wonder if that's on purpose?). People can get information virtually everywhere, but support is harder to find. If a poster finds an educational link to be unsupportive, I think it is good courtesy to be respectful of that request.
If a poster starts to feel down, depressed and like nothing they say matters, I feel IMHO that this needs to be considered. We already know that we do not have "free speech" on Babble, since to grant that might infringe upon the site's purpose, "to offer support and education."
We may have the right to say something. But out of respect and consideration, the kindest thing maybe to not say what we want to say, at times. That is true Babble spirit--it is the spirit of the law rather than the letter of the law.
I have done my best to be clear. Please don't anyone ask me for clarification because I can't make it any more so. Plus I'm leaving on vacation for a week and won't be here to clarify anything anyway. What you see is what you get.
Voce
Posted by Lou Pilder on June 12, 2005, at 18:18:16
In reply to Can I just offer my opinion to Lou and others?, posted by messadivoce on June 12, 2005, at 17:03:49
Friends,
It is written here in some way,[...is it possible to end the discussion about lupus...?
I consider the matter moot because Dinah has posted in some way that we should forget what she wrote and I honored her request by not responding to the thread anymore. I thought that this was behind us and that we were going forward.
My request is to the forum that we honor Dinah's request when she wrote what IMO meant in some way to withdraw what she posted and go on. I certainly have no intention of bringing this subject up again and in other forums when a poster writes what Dinah wrote, it is an indication that what the poster initiated or responded to and what follows is withdrawn and I respect that convention.
Lou
Posted by Lou Pilder on June 12, 2005, at 18:27:41
In reply to Can I just offer my opinion to Lou and others?, posted by messadivoce on June 12, 2005, at 17:03:49
Friends,
In repect to this discussion I am requesting that Dinah's post to me be read.
In her post she writes,[...I sincerely regret any distress that I have caused you...].
I do not believe that I had posted to her about the topic after she wrote that and I honor a request like hers.
My overriding concern here is that others also honor Dinah's request and let it go?
Lou
http://www.dr-bob.org/babble/admin/20050530/msgs/511396.html
Posted by so on June 12, 2005, at 18:38:04
In reply to Lou's response to Dinah's post-:B » Dinah, posted by Lou Pilder on June 12, 2005, at 8:31:39
Lou,
I want to acknowledge that your interest in this matter led me to independently explore information about lupus and the prognosis for people suffering the disease. I learned that the mortality rate for people diagnosed with Lupus has decreased in part because a larger number of people are now diagnosed, due to the recently aquired ability to diagnose less severe forms of the disease. For those suffering more severe forms, the mortality rate has decreased because the disease is sometimes controllable, but is not yet considered curable. But for a certain group of people with the disease, the prognosis for long-term survival remains poor. I believe it is compassionate to recognize that some people must face the expectaton of death, either their own or that of loved ones. Though I hold no opinion about who should say what to the person whose personal experience led to this current discussion, I find that compassion, or "suffering with" a person can involve sharing their burden with a solemn realization of the inevitable, along with perhaps expressing a hope, albeit sometimes only to become adjusted to the futility of hope, for more time to live.
I don't concur with an opinion expressed elsewhere that anyone "earns" a right to discuss difficult aspects of a disease by having the disease, or by having a family member who has the disease. If that is so, we must all face death, so we have all "earned" the right to face the inevitability of death.
Nor do I concur with an opinion that holds only "positive" information about a disease is compassionate in an educational forum. Part of the difficulty of facing a potentially fatal disease is confronting the inevitability of death in some cases.
Having reviewed this thread about how discussion of a sometimes fatal autoimmune disorder can be compassionately discussed at this forum, I have begun to wonder why so few, if any, people suffering from aquired immune difficiency syndrome have presented here for support and education related to the mental difficulties associated with that disease. I am familiar with the battlefield comfort offered in the phrase "everything's going to be alright" spoken to a dying person, but for those with more time to contemplate the reality and inevitability of death, I wonder if an assertion that "everything is going to be alright" is sometimes insufficient to support their needs in the face of likely death.
Further, because these diseases are increasingly controllable, recognition of the risks the diseases pose can assist those suffering from or supporting those with the disease in making intelligent either/or choices about what activities might be worthwhile or safe for them to pursue.
For my part, as my time on Earth becomes shorter, I realize that avoidance of discussion of death might serve those with more time to avoid the topic than it does those of us whose time is approaching. Among those I know who have faced death at an old age or by disease, I recall that they broached the topic of death often as a way of preparing those who have more time to live for the moment when they must confront the departure of a loved one.
Posted by so on June 12, 2005, at 18:43:35
In reply to Lou's response to messadivoce's post-B, posted by Lou Pilder on June 12, 2005, at 18:27:41
Lou,
your request appeared only after I had submitted the post below, and I did not intend to post about the matter contrary to your request. I had earlier avoided joining this thread, but became interested when the topic more directly focused on appropriate dialectic responses to mortality.
I will honor your request, asking only that we hold open an opportunity to explore dialectic responses to mortality elsewhere, at some other time, in a context that does not derive from the very personal experiences of the people about whose lives this thread found meaning.
Posted by Dinah on June 12, 2005, at 19:17:39
In reply to Re: Making a difference, posted by Phillipa on June 12, 2005, at 16:42:49
I was writing quickly and I think I overstated a bit. I'm just trying to come to grips with my limitations. And they seem enormous at the moment. :)
Posted by Phillipa on June 12, 2005, at 19:18:08
In reply to Re: so's agreement to Lou's request » Lou Pilder, posted by so on June 12, 2005, at 18:43:35
Lou, Thank-you. Fondly, Phillipa
Posted by chemist on June 12, 2005, at 19:36:34
In reply to Re: so's consideration of Lou's post » Lou Pilder, posted by so on June 12, 2005, at 18:38:04
hello there, chemist here...my comments are delineated by asterisks, below...all the best, chemist
> Lou,
>
> I want to acknowledge that your interest in this matter led me to independently explore information about lupus and the prognosis for people suffering the disease. I learned that the mortality rate for people diagnosed with Lupus has decreased in part because a larger number of people are now diagnosed, due to the recently aquired ability to diagnose less severe forms of the disease. For those suffering more severe forms, the mortality rate has decreased because the disease is sometimes controllable, but is not yet considered curable. But for a certain group of people with the disease, the prognosis for long-term survival remains poor. I believe it is compassionate to recognize that some people must face the expectaton of death, either their own or that of loved ones. Though I hold no opinion about who should say what to the person whose personal experience led to this current discussion, I find that compassion, or "suffering with" a person can involve sharing their burden with a solemn realization of the inevitable, along with perhaps expressing a hope, albeit sometimes only to become adjusted to the futility of hope, for more time to live.
>
> I don't concur with an opinion expressed elsewhere that anyone "earns" a right to discuss difficult aspects of a disease by having the disease, or by having a family member who has the disease. If that is so, we must all face death, so we have all "earned" the right to face the inevitability of death.
>
> Nor do I concur with an opinion that holds only "positive" information about a disease is compassionate in an educational forum. Part of the difficulty of facing a potentially fatal disease is confronting the inevitability of death in some cases.
>
> Having reviewed this thread about how discussion of a sometimes fatal autoimmune disorder can be compassionately discussed at this forum, I have begun to wonder why so few, if any, people suffering from aquired immune difficiency syndrome have presented here for support and education related to the mental difficulties associated with that disease.*** the issue of acquired immune difficiency syndrome is largely identified with a sexually-active, homosexual male population and a group of users of illicit drugs via intraveneous routes; additionally, populations who are not native speakers of english have been at higher risk, yet this was true 20 years ago and less so now.
the very government whose policies have been purported to be ``hypocritical,'' ``pathetic,'' and ``a joke'' in another thread is comprised of elected officials with whom poster ``so'' has repeatedly made clear are those said poster is represented by in the u.s. government.
the u.s. government does not recognize the union of gay couples in the same light of heterosexual couples (not to mention insurance issues, right to deny/affirm life support, and so forth); the u.s. government does not support the medical use of marijuana, much less the implementation of a needle exchange program, nor are drugs such as heroin and methamphetamine currently deemed anything short of schedule I (heroin) and schedule II (methamphetamine, p.o.); and the u.s government - elected by a simple majority of voters of legal voting age, active registration, and incentive to actually vote and thus hardly a majority of the u.s. population in any manner - is publicly standing tall in the three branches on a platform of so-called ``family values'' as espoused by president george w. bush; senate majority leader bill frist; and the supreme court.
the current administration would be acting in a hypocritical manner if the support needed were offered to those who contracted HIV (and, subsequently, AIDS - or not) through homosexual contact (inclusive of sodomy, illegal in many u.s. states); bisexual contact; or needle-sharing.
the u.s. government - ``so's'' electorate, and not mine - is not accurately defined as pathetic - having a capacity to move one to either compassionate or contemptuous pity or marked by sorrow or melancholy, according to my Webster's - as much as ``apathetic'' - having or showing little or no feeling or emotion or having little or no interest or concern - as far as the cohort of people infected with and/or suffering from HIV and/or AIDS; and to suggest otherwise is, in my opinion, nothing short of a sick joke. an offensive and deleterious sick joke, in my estimation.
having one's cake and eating it, too, is not a luxury afforded those who are represented by the executive, legislative, and judicial branches of the current u.s. govenerment as far as HIV and AIDS is concerned (at least). ***
I am familiar with the battlefield comfort offered in the phrase "everything's going to be alright" spoken to a dying person, but for those with more time to contemplate the reality and inevitability of death, I wonder if an assertion that "everything is going to be alright" is sometimes insufficient to support their needs in the face of likely death.
>
> Further, because these diseases are increasingly controllable, recognition of the risks the diseases pose can assist those suffering from or supporting those with the disease in making intelligent either/or choices about what activities might be worthwhile or safe for them to pursue.
>
> For my part, as my time on Earth becomes shorter, I realize that avoidance of discussion of death might serve those with more time to avoid the topic than it does those of us whose time is approaching. Among those I know who have faced death at an old age or by disease, I recall that they broached the topic of death often as a way of preparing those who have more time to live for the moment when they must confront the departure of a loved one.
Posted by JenStar on June 12, 2005, at 21:49:57
In reply to Lou's request to the administration, posted by Lou Pilder on June 11, 2005, at 8:37:34
Lou, I have to admit I'm curious about this post.
Do you feel that you "own" any responsibility for any perceived ill-will towards you? Do you feel that your actions and words could be responsible for any ill-will?
Do you feel that you have the ability to develop mutually supportive relationships with posters here that would alleviate some of the ill-will?
Do you feel that you're able to communicate with other posters in the "common" fashion that is seen on the psych and social boards?
I have to admit that I've never seen a post from you on the social board. All I see from you are requests for determinations. Do you see yourself as a person who contributes to the support of others here?
Just curious,
jenStar
Posted by JenStar on June 12, 2005, at 21:52:38
In reply to Re: Lou's request to the administration, posted by so on June 11, 2005, at 18:54:04
I'd be interested in any jokes you have. I think the caveat would be to post on social and to put "trigger" in big letters in the subject line so people could avoid it if it's really upsetting. Of course, if the jokes are really crude or off-color, this might not be the right forum after all! But if you have any good "light" Jack-Handy-ish humor (see social), come join us and joke away!
JenStar
Posted by Nikkit2 on June 13, 2005, at 5:11:11
In reply to Re: Lou's request to the administration » Lou Pilder, posted by NikkiT2 on June 11, 2005, at 8:57:27
Incase you missed my first post Lou, I'm going to ask this again as I think its an important point.
"Do you mean the admin board, or all the boards?
Do you expect someone to be here 24/7? Or just during American hours? "
Nikki
Posted by Lou Pilder on June 13, 2005, at 7:07:16
In reply to Re: Lou's request to the administration » Lou Pilder, posted by JenStar on June 12, 2005, at 21:49:57
> Lou, I have to admit I'm curious about this post.
>
> Do you feel that you "own" any responsibility for any perceived ill-will towards you? Do you feel that your actions and words could be responsible for any ill-will?
>
> Do you feel that you have the ability to develop mutually supportive relationships with posters here that would alleviate some of the ill-will?
>
> Do you feel that you're able to communicate with other posters in the "common" fashion that is seen on the psych and social boards?
>
> I have to admit that I've never seen a post from you on the social board. All I see from you are requests for determinations. Do you see yourself as a person who contributes to the support of others here?
>
> Just curious,
> jenStarJen Star,
Is what you wrote here something that has the potential to mean,[...do you think that what you write could be responsible for any posts here that could have the potential to arrouse ill-will toward you?...]?
If so, are you saying that those type of posts are to be allowed to be posted here?
Lou
Posted by Nikkit2 on June 13, 2005, at 7:09:55
In reply to Asking again.. » NikkiT2, posted by Nikkit2 on June 13, 2005, at 5:11:11
Posted by JenStar on June 13, 2005, at 12:49:59
In reply to Lou's reply to Jen Star-alowdefam? » JenStar, posted by Lou Pilder on June 13, 2005, at 7:07:16
Lou, I'm sorry, but I really don't understand your question. Can you rephrase?
thanks,
JenStar
Posted by Dr. Bob on June 14, 2005, at 3:12:10
In reply to chemist's consideration of so's post » so, posted by chemist on June 12, 2005, at 19:36:34
> the very government whose policies have been purported to be ``hypocritical,'' ``pathetic,'' and ``a joke''...
Sorry to interrupt, but I'd like to redirect follow-ups regarding government policies to Psycho-Babble Politics. Here's a link:
http://www.dr-bob.org/babble/poli/20050509/msgs/512420.html
Thanks,
Bob
Posted by so on June 14, 2005, at 11:12:05
In reply to Redirect: government policies, posted by Dr. Bob on June 14, 2005, at 3:12:10
> > the very government whose policies have been purported to be ``hypocritical,'' ``pathetic,'' and ``a joke''...
>
> Sorry to interrupt, but I'd like to redirect follow-ups regarding government policies to Psycho-Babble Politics. Here's a link:
>
> http://www.dr-bob.org/babble/poli/20050509/msgs/512420.html
>
> Thanks,
>
> Bob
Does that comprise a statement on your part that it is okay to refer to government policies and to the people who support those policies using the terms selected from other's posts and cited above?If you are affirming the acceptability, I suggest including an explanation of that permission in the proposed spreadsheet, which I capable of compiling and programming as an unbiased phrase-sniffing artifical intelligence algorithm -- given the time and resources.
Posted by Dr. Bob on June 15, 2005, at 0:30:56
In reply to Re: admin: how to characterize policies » Dr. Bob, posted by so on June 14, 2005, at 11:12:05
> Does that comprise a statement on your part that it is okay to refer to government policies and to the people who support those policies using the terms selected from other's posts and cited above?
No, I just wanted to redirect those posts.
Bob
This is the end of the thread.
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