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Posted by All Done on June 9, 2005, at 19:32:40
In reply to Lou's request to Dr. Hsiung, posted by Lou Pilder on June 9, 2005, at 17:40:04
> Dr. Hsiung,
> I am requesting that you address the thread that has the following posts.
> A poster writes that he/she has a father that [...was given 3-6 months...], and the poster ,[...became sick...very depressed...]and the poster has been , [...diagnosed with Lupus...]
> I think that the statement has the potential to mean that the poster could be facing death from lupus.Lou,
Can you explain how you came to the conclusion that the statement the poster made regarding her diagnosis of Lupus has has the potential to mean she is facing death from Lupus?
Thanks so very much, Lou.
Laurie
Posted by Slinky on June 9, 2005, at 19:34:00
In reply to Re: Lou's reply to gardenergirl-, posted by Phillipa on June 9, 2005, at 18:37:47
Is this cruel?
Why not address the doctor by email instead of
extracting posts causing the writer upset
for all to see ?
I know you're a nice guy Lou.
Come and visit my hometown for a shock..we're very tolerant ...Dedicated to a long lost friend who I never stuck up for (I was blinded by efexor)
Block me..my stools are loose anyway.
Posted by Gabbi-x-2 on June 9, 2005, at 20:12:03
In reply to Lou's request to Dr. Hsiung, posted by Lou Pilder on June 9, 2005, at 17:40:04
> Dr. Hsiung,
> A poster writes that he/she has a father that [...was given 3-6 months...], and the poster ,[...became sick...very depressed...]and the poster has been , [...diagnosed with Lupus...]
> I think that that statement has the potential to mean that the father is going to die in that time frame of 3-6 months and I think that the statement has the potential to mean that the poster could be facing death from lupus .
> I do not see any humor in the description that the poster gives of his/her circumstances.
Hi Lou!I hope you don't mind me giving you my opinion.
I can see how a post with the words "facing death"
and a response, saying there is "humour" in that post, could come across to you Lou, as someone joking about death. I know that's not the case though. GG was complimenting the poster on her ability to to laugh even under such dire circumstances. It was an acknowledgement of the posters strenghth, it was most definitely not about finding her situation funny.
> I am requesting that you write a determination as to if the following post is or is not in accordance with your guidline to [...not joke about death...] or some other guidline.
> The first URL below is the post that has the description of the poster's circumstances and the second URL is the post that I am asking you to make a determoination about where the poster writes,[...ther is a "ha ha" there...]. Lou Pilder
> http://www.dr-bob.org/babble/faith/20050510/msgs/509160.html
> http://www.dr-bob.org/babble/faith/20050510/msgs/509842.html
Posted by Phillipa on June 9, 2005, at 20:16:27
In reply to Re: Lou's request to Dr. Hsiung » Lou Pilder, posted by Gabbi-x-2 on June 9, 2005, at 20:12:03
Spriggy, herself just clarified this on the original Faith Thread. Fondly, Phillipa
Posted by Gabbi-x-2 on June 9, 2005, at 20:53:00
In reply to Re: Lou's request to Dr. Hsiung » Lou Pilder, posted by Gabbi-x-2 on June 9, 2005, at 20:12:03
Oh Good!
Thanks for letting me know.
Posted by Lou Pilder on June 9, 2005, at 22:16:42
In reply to Re: Lou's request to Dr. Hsiung » Lou Pilder, posted by All Done on June 9, 2005, at 19:32:40
All Done,
You wrote,[...can you explain...Lupus?].
I have a background in life insurance and know about probibility in relation to afflictions.
Lupus is an affliction where the body attacks itself as an autoimmune disease.
Statistically, deaths of people with lupus years ago were not known likely because there was not a diagnosis of lupus many years ago like there is now. There is the potential for lupus to be fatal and there have been a great increase of the number of deaths ascribed to lupus in the past years, probably because there is a better diagnosis available to determine that lupus was the cause of death. Also, drugs that are available popularly today that were not, perhaps, popular years ago can cause lupus.
Women are the most gender to aquier lupus, and I think that the poster in question could more likely be a woman. I had clients that I could not insure because they were diagnosed as having lupus.
I will never forget the one young woman on crutches and her husband when I told her that our company had to decline her for life insurance because of her diagnosis of lupus.
Is the diagnosis of lupus a death sentence? I wrote that there is the potential. Is there a cure for lupus? I know of none.
Below is a link to explain more about lupus.
Lou
http://www.4women.gov/Lupus/1.htm
Posted by Phillipa on June 9, 2005, at 23:06:13
In reply to Lou's reply to All Done » All Done, posted by Lou Pilder on June 9, 2005, at 22:16:42
This article was printed in 200l. Since that time new and more effective drugs have been released for tx. Lupus doesn't always have to involve multiple organs [systemic lupus], it can also be discoid lupus involving the skin. An elevated ANA is one indicator of lupus. There are also more conclusive tests. The only sure way to diagnose systemic lupus is through a kidney biopsy. Since I also have an elevated ANA, I've been tested for lupus. I do not have lupus. My sister does have lupus and has for years. It is so mild that she doesn't require any medications at all, even if her ANA gets really high. You can have a false positive ANA from medications such as inderal which when discontinued allow the ANA to go back to within normal ranges. I attended pre-nursing classes with a woman in her early 40's who had been wheelchair bound with a lupus flair. She was in total remission and was becoming a dental technician. The only time she had an exacerbation of the illness was when she was in the sun. Then she would experience arthritic symptoms. She had two children. She was never sick the whole two years I was in school with her. I recently returned to my plastic surgeon's office where about l0 yrs ago I had received facial tx's from a woman with lupus. She had had a child after her lupus was diagnosed. [planned]. She takes medication and hasn't missed work in the l0 years since I saw her last. She is still working. The only thing she can't have is any of the facial fillers. She leads a perfectly normal life thanks to the newer medications. She has been told she can expect a normal life expentency. More Afro-American women are effected than Anglo Saxon American women. [same in other countries].It is not known why. Sometimes if the systemic lupus is very severe types of chemo drugs are successfully used. The insurance companies are looking for any way not to insure individuals. That is why it is so important to Cobra insurance if you leave your job and not allow any lapse in coverage. This way the new insurance company has to cover any preexisting condition. If it lapses you have to wait one year for the coverage to begin. If I was told tomorrow that my elevated ANA was from lupus it wouldn't frighten me. I would know that there are medications, and life style changes that would give me a probable normal life span. The insurance companies charge exorbitant fees for Cobra to discourage people from keeping their insurance in an attempt to not have to pay for any illness and allow the number of Americans that are uninsured to rise. This means the cost of insurance for others rises to help pay for those who can't afford medical insurance. Which leads to the hospitals having more and more indigent patients. Which leads to hospitals losing money, which leads to cutting costs by cutting the amount of nursing care to all. This in turn creates nonquality care for all patients. Insured and uninsured are both treated equally. I could go on and on. But my point is that lupus is not always fatal. And not all lupus is severe or even effects the internal organs. Fondly, Phillipa
Posted by Phillipa on June 9, 2005, at 23:15:59
In reply to Lou's reply to All Done » All Done, posted by Lou Pilder on June 9, 2005, at 22:16:42
And is this any different than a diagnosis of heart disease, diabetes, mental illness, asthma, alchoholism, etc. the list goes on and on. Some diseases are acquired and some are inherited. Should there be discrimination? And should all the ill people not have a sense of humor? Norman Cousins states that "laughter is the best medicine." They now use funny movies and comedy in Cancer Wards. Laughter produces positive endorphins that help the immune system. And so does massage, Faith, etc. This topic really gets to me. I've watched so many people beat the odds. Fondly, Phillipa, Patient Advocate
Posted by Racer on June 9, 2005, at 23:46:57
In reply to Lou's request to Dr. Hsiung, posted by Lou Pilder on June 9, 2005, at 17:40:04
I don't generally get involved in this sort of thread, because -- frankly -- these constant requests for Dr Bob to check this thread or that for *potential* problems do not seem to add any value to this site. I figure, if someone actually *does* have a problem with a post, that person is perfectly capable of coming here him or herself to say so.
In this case, though, after reading most of the threads, it looks to me like intentional misunderstanding. This thread has obviously upset a number of people -- not least Gardenergirl, who seemed to me to be complimenting Spriggy on her strength and resilience. The original post reads to me like a strong, resilient woman who has not lost her sense of humor in a very, very trying time in her life when it would be so easy for her to do so.
If someone on one of these boards were to post something to me, and *someone else* -- anyone except me, anyone -- came over here to complain about it, or to ask that Dr Bob make a determination about its appropriateness, I would be offended. I would find that disrespectful, because it would feel as though I wasn't thought to be capable of speaking for myself.
Just some food for thought.
This thread very much offends me.
Posted by Phillipa on June 9, 2005, at 23:59:38
In reply to I am very much offended by this thread. » Lou Pilder, posted by Racer on June 9, 2005, at 23:46:57
Racer, Me too! Spriggy has already posted on Faith that what was said didn't offend her. I won't speak for her. Visit the Thread which starts this one. I too, don't get involved in this type of Thread but Spriggy is my friend. I'll go out on a limb any day for her. She is one of the strongest people I know. And she's been through so much. I love Spriggy! Fondly, Phillipa
Posted by justyourlaugh on June 10, 2005, at 0:51:03
In reply to Re: I am very much offended by this thread. » Racer, posted by Phillipa on June 9, 2005, at 23:59:38
many of us posted about this style...
if i do not agree..should i tell?
if i do not understand motive..should i bring it to administration?..
why am i always looking for hurt?
why do i always feel hurt is out there?
j
Posted by Dr. Bob on June 10, 2005, at 5:09:43
In reply to Lou's request to Dr. Hsiung, posted by Lou Pilder on June 9, 2005, at 17:40:04
> I am requesting that you write a determination as to if the following post is or is not in accordance with your guidline
I think it is.
Bob
Posted by Lou Pilder on June 10, 2005, at 7:20:43
In reply to Re: Lou's reply to All Done » Lou Pilder, posted by Phillipa on June 9, 2005, at 23:06:13
Phillipa,
You wrote,[...article was...2001..]
Below is a link to a 2005 article.
Lou
http://www.theorator.com/bills109/s756.html
Posted by Dinah on June 10, 2005, at 8:19:41
In reply to Lou's reply to All Done » All Done, posted by Lou Pilder on June 9, 2005, at 22:16:42
There are people on this board with Lupus, or who are being tested for Lupus. They are aware of the risks, and that most people with Lupus live with it for a normal lifespan as they do with any other chronic illness.
I have Diabetes, and while I'm aware of the risks, I'm also aware that for most it is a chronic illness and you can live a normal lifespan.
But I think I'd feel distressed with someone linking to or discussing extremely negative information about diabetes.
People are trying their best to remain positive, Lou. Do you think you could help them out a bit by remaining positive yourself?
Posted by gardenergirl on June 10, 2005, at 8:41:06
In reply to Lou?, posted by Dinah on June 10, 2005, at 8:19:41
I was thinking something similar, but I didn't quite know how to address it.
Thanks. You've eased some of my concern for someone I care about.
gg
Posted by Lou Pilder on June 10, 2005, at 9:28:11
In reply to Lou?, posted by Dinah on June 10, 2005, at 8:19:41
Dinah,
You wrote,[...linking...infomation...help them out..]
Are you saying that my offering a link in my response to another poster's statement that my other link was [...from a few years ago and that there is new...]is a link that I should not have posted?
Lou
Posted by Phillipa on June 10, 2005, at 11:21:50
In reply to Lou's reply to Phillipa- » Phillipa, posted by Lou Pilder on June 10, 2005, at 7:20:43
Lou, So what's the problem? It's only 20%. Our point is we don't want Spriggy to worry when she has reported she is feeling so much better. Fondly, Phillipa
Posted by Lou Pilder on June 10, 2005, at 12:09:36
In reply to Re: Lou's reply to Phillipa-, posted by Phillipa on June 10, 2005, at 11:21:50
> Lou, So what's the problem? It's only 20%. Our point is we don't want Spriggy to worry when she has reported she is feeling so much better. Fondly, Phillipa
Phillipa,
In your above post, could you clarify what you mean by a "problem" and also what you mean by,[...it's only 20%...]?
Lou
Posted by Toph on June 10, 2005, at 12:16:10
In reply to Lou?, posted by Dinah on June 10, 2005, at 8:19:41
Some people would rather be despised than ignored.
Posted by Racer on June 10, 2005, at 12:32:28
In reply to Re: Lou? » Dinah, posted by Toph on June 10, 2005, at 12:16:10
> Some people would rather be despised than ignored.
Can you clarify? ;-|
Thank you for making this point. I don't want to speculate whether that is really what's happening here, but you just cut through a lot of chaff to find the heart of the wheat.
Thank you.
Posted by Minnie-Haha on June 10, 2005, at 13:12:07
In reply to I am very much offended by this thread. » Lou Pilder, posted by Racer on June 9, 2005, at 23:46:57
Posted by Phillipa on June 10, 2005, at 14:13:46
In reply to Re: Lou? » Toph, posted by Racer on June 10, 2005, at 12:32:28
Nope I won't clarify. Enough has already been said. I'm done with this Thread. I just hope Spriggy hasn't seen it. She had said she was busy so I hope she's not been on Administration. She has enough problems to deal with. Fondly, Phillipa
Posted by Spriggy on June 10, 2005, at 14:15:04
In reply to Re: Me too! (nm) » Racer, posted by Minnie-Haha on June 10, 2005, at 13:12:07
I had no idea this had become such an issue. Quite frankly, my life has kept me so busy that I haven't much of a chance to catch up with you all as much as I would like.
Honestly, I want to make it very, very, very clear that nothing anyone said in response to my faith thread was offensive to me. Most people here that understand me, understand that humor is a large part of my personality and life. Even in difficult things like death, lupus, a son with autism, an unemployed husband,etc.. I am grateful to say I still have the ability to laugh! Not laugh or make light of all the serious situations I am in, but laugh because sometimes, life is just funny!
I have no problem with other people finding humor in difficult things either- even if it's difficult things I'm enduring. I welcome it in fact, if we can't laugh, that leaves us with the feeling that we are hopeless.
Humor is a gift from God. I don't see it as being at my expense- I see it as a gift.
Honestly, when I see things like this result from me sharing my heart, it really makes me question if I should ever even open again because I hate seeing chaos and people getting hurt.
I love you guys and want you to understand where I stand on this. I have not been offended.
Posted by Minnie-Haha on June 10, 2005, at 14:31:04
In reply to Can I say something here??????????????????, posted by Spriggy on June 10, 2005, at 14:15:04
> Honestly, when I see things like this result from me sharing my heart, it really makes me question if I should ever even open again because I hate seeing chaos and people getting hurt.
>
> I love you guys and want you to understand where I stand on this. I have not been offended.I'm with you on trying to keep a sense of humor. Please don't stop sharing. I love reading your posts!
Posted by Deneb on June 10, 2005, at 14:55:05
In reply to Lou's request to Dr. Hsiung, posted by Lou Pilder on June 9, 2005, at 17:40:04
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