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Author Topic: Members- Please read and respond from Admin  (Read 3054 times)
kitkatz
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« on: October 06, 2018, 01:20:37 PM »

After reading several people's comments on a Facebook page, I am stunned as the admin of Ihatedialysis.com.

My style of admin has been hands- off and let the forums run themselves.  It has worked over the last few years with only a few problems that have been addressed. Suddenly I read that the forums have changed and they do not like the tone of it anymore from long time members. 
I am disappointed not one of these members has spoken or written to me about anything happening. 
I cannot change things if I do not  know about them.

You all know the political section on the forums is not moderated for the very reasons you list why you do not want to be there anymore.  The advice from your friend, the admin, is stay out of the political post area on the forums.

The rest of the board seems to be cooking along. The forums are undergoing a few changes and I am thinking of having a private Facebook forum page for Ihatedialysis.com  Many people have asked for a private page.  It takes time to get things to change. 

If you want the forums to change, then be part of the positive change, don't just leave.  Be a part of the positive changes you want to see here.

kitkatz,Admin
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Paul
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« Reply #1 on: October 06, 2018, 01:47:26 PM »

I am disappointed not one of these members has spoken or written to me about anything

I'm not surprised though. When I questioned a couple of things in a PM to you, your reply was to the effect of "I don't care what you think - Just shut up and obey the rules as they are currently stated." (Not in those words, but as terse.)
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
MooseMom
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« Reply #2 on: October 06, 2018, 02:28:56 PM »

For what it is worth, I think you're doing a fab job by treating us like adults instead of like snowflakes.  I like your hands off approach.

I have been a member here for over ten years and have not seen any big changes.

My personal feeling about the political forum is that we are more than a collective of duff kidneys.  We are a community of three dimensional people who are quite capable of having different opinions while also doing everything we possibly can via a keyboard to look after one another.  I choose not to believe that some political disagreement on that forum would cause any one of us to wish someone  ill will.

Members are free to come and go as they like, just as they are free to use Ihd however it is most useful to them.

I have never used the Facebook site, and now I think I know why.
« Last Edit: October 06, 2018, 02:32:16 PM by MooseMom » Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #3 on: October 06, 2018, 02:49:49 PM »

Don't have Facebook, probably never will. We are all adults and when some comments seem sharp or particularly nasty- well, that's free speech. The next post might be lovely and cheerful.

Don't take any Fakebook comments personally. I think IHD is great and a valuable resource.
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MooseMom
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« Reply #4 on: October 06, 2018, 03:12:55 PM »

Don't have Facebook, probably never will. We are all adults and when some comments seem sharp or particularly nasty- well, that's free speech. The next post might be lovely and cheerful.

Don't take any Fakebook comments personally. I think IHD is great and a valuable resource.

This.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kitkatz
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« Reply #5 on: October 06, 2018, 03:58:10 PM »

Paul, you never met the original owner of this site.  It was his way or hit the highway at all times.



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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
iolaire
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« Reply #6 on: October 06, 2018, 08:32:06 PM »

What would your goals be for a private Facebook group?

My feeling with the political tread is of the content bothers me I should not read it. But people do take response personally and names are called twords people so I could understand unhappiness.

Regarding Facebook I signed up for the current group and stopped reading it. Unlike this group it felt like most posts were requests for moral support, where here people are trying to learn and get feedback on life with kidney failure.  This seems more educational.
« Last Edit: October 06, 2018, 08:36:45 PM by iolaire » Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #7 on: October 06, 2018, 10:58:25 PM »

I tend to skip over the facebook posts when they show up in my feed because they are too religious, or they are asking dumb questions like the "how many do this" questions.  I prefer this forum, and have been coming here for a long time.  I don't know when I started, but I know I was on PD at the time, and I've been off PD for almost 10 years.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Rerun
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« Reply #8 on: October 07, 2018, 09:43:55 AM »

I've not used the Facebook Page either.  The original owner and creator of IHD - Epoman, started this site because other Dialysis sites censored his posts.  I, myself, was banned from one because I told 'Dory' to "keep on swimming, swimming, swimming".  I don't care who you are!  That was funny!   Oh well.....   IHD does not Censor unless it is Vulgar, or selling or buying kidneys or other stuff.  Twitter is accused of shadow banning and censoring.  So, a bunch of other sites have popped up. 

The political section is only about six members.  Them and me.  I'm not leaving. 

People are sensitive and there are choices, and as Epoman would say.... "Go Start Your Own Site"  Don't let the door hit ya, Where The Good Lord Split ya!   
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cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: October 07, 2018, 12:16:34 PM »

What would I want from FB? This site is good, the political site can be irritating, shocking even, scary too. But that's only what 1% of the site?



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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
willowtreewren
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My two beautifull granddaughters

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« Reply #10 on: October 07, 2018, 12:30:13 PM »

Until I saw the responses on Facebook, I had not thought about the faces I no longer saw here.

It has helped me realize that it is time for me to move on, too. The folks who I hold dear don't post much here anymore. Some have died, some have been banned, and some have just drifted away, as I learned on FB.

And I find that I'm not giving the support to others here that I once gave.

Anyone who wishes to stay in contact with me can PM me for that information.

This site was a great help to me when I needed it, as I'm sure it still is form many others.

 :bestwishes;

Aleta

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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
PrimeTimer
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« Reply #11 on: October 07, 2018, 02:51:59 PM »

Not a Facebook user and don't want to be. Love this site, tho.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
kristina
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« Reply #12 on: October 08, 2018, 03:40:26 AM »

Hello kitkatz,
I am not on facebook or twitter etc. and I want to say, that for me IHD is invaluable and I could not do without and I am sure, many other ESRF-people feel exactly the same. One of the most important points for me is the fact that I know for sure that I always can come along to ask a question here to feel a bit more re-assured, when something seems a bit unclear and knowing of IHD helps me a lot to remain as relaxed as can be about being on dialysis etc.
Many thanks for your kind input and many thanks for being here for us, couldn't do without ...
Best wishes and thanks again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
lulu836
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« Reply #13 on: October 08, 2018, 07:47:30 AM »

Don't use Face Book and never will.  Large congregation of opinionated narcissistic idiots interested only in their own ilk.
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Of all the things I've lost, I miss my kidneys the most.
willowtreewren
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My two beautifull granddaughters

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« Reply #14 on: October 08, 2018, 08:32:27 AM »

Don't use Face Book and never will.  Large congregation of opinionated narcissistic idiots interested only in their own ilk.

And right there is part of the reason I'm leaving IHD.
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Rerun
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« Reply #15 on: October 08, 2018, 09:32:01 AM »

Everyone has a right to their own opinion. 
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Bill Peckham
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« Reply #16 on: October 08, 2018, 10:40:11 AM »

After reading several people's comments on a Facebook page, I am stunned as the admin of Ihatedialysis.com.

My style of admin has been hands- off and let the forums run themselves.  It has worked over the last few years with only a few problems that have been addressed. Suddenly I read that the forums have changed and they do not like the tone of it anymore from long time members. 
I am disappointed not one of these members has spoken or written to me about anything happening. 
I cannot change things if I do not  know about them.

You all know the political section on the forums is not moderated for the very reasons you list why you do not want to be there anymore.  The advice from your friend, the admin, is stay out of the political post area on the forums.

The rest of the board seems to be cooking along. The forums are undergoing a few changes and I am thinking of having a private Facebook forum page for Ihatedialysis.com  Many people have asked for a private page.  It takes time to get things to change. 

If you want the forums to change, then be part of the positive change, don't just leave.  Be a part of the positive changes you want to see here.

kitkatz,Admin


Facebook has eaten all of the discussion boards. I couldn't find the Facebook post but Facebook discussions have the memory of fruit flies so it'll be forgotten soon enough. What Facebook lacks in quality it makes up in quantity, check out the number of replies to a question that was discussed two days ago, there is no chance a discussion board would accomodate the same question week after week. There really no level of moderation that could compete with that repetition.

However, Facebook does work - if you have a question it is natural to just want to ask your question and hear from other people in real time rather than read through old threads and try to find the relevance to your particular situation. If I was just starting I would likely turn to Facebook long before IHD, so with fewer people coming in each person who drifts away will be noticed.


 
« Last Edit: October 08, 2018, 10:41:24 AM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #17 on: October 08, 2018, 12:26:00 PM »

I am a member of Facebook, but couldn't find the posts talked about above even after searching?

As a newer member of this site, the knowledge here was invaluable to me being a caregiver for my daughter before her transplant.

As far as the political posts-I stay away from them here...and on Facebook.

My idea of fun is sharing neat stuff with friends and family, not berating, belittling, arguing and somehow trying to convince the "other side"  that they are right and "we" are wrong-regardless of one's feelings...People being nice to each other has kinda gone out the window.  Also, just because you wrote something a certain way-doesn't mean it will be perceived/read they way you wanted it to be read...

One comment that I can make is that on most days I come to the site, I search the most recent posts by the link at the bottom of the forum. On most days, the top 20 posts are all political....so I just log off and go on my way.

One suggestion that I would like to make is that some boards have a current events forum that you actually have to join on the site, otherwise you don't see those posts. Maybe that could be an option here?

Anyways, thanks for a great site and also that for all of the help!
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
MooseMom
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« Reply #18 on: October 08, 2018, 02:54:14 PM »

My experience seems to be different from that of Xplantdad because On most days, I see discussions about dialysis and not about political topics.  In saying that though, there have been a couple of times when those relatively few of us who do participate in said discussions all happen to be online at the same time, so I can see why it may appear that way.

I can also understand that feeling that being nice to people had gone out the window, but I don't see IHD as being representative of that.  Some of us on "opposing sides" communicate with each other via PM to offer support and concern, and none of those private messages are shared publicly.

But back to kitkat's concerns, I find it very hard to believe that someone who really needs this site would be put off by political arguments.  That just seems daft because that forum is such a very small and inconsequential part of the mission of this site.

My idea of fun is sharing neat stuff, love and support with even those people who have an entirely different world view.  Those world views inform me and remind me that we all have a unique life experience that usually results in those different political opinions.

I seem to be repeating myself, so this has been my final say!  Lol


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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #19 on: October 08, 2018, 03:08:23 PM »

I get what you are saying Moosemom, but from a relative newcomer to the site, the way I navigate the site is from the "View the most recent posts on the forum" link. It's faster than clicking on each individual section to look for new posts :)

Like Bill said here:
Quote
However, Facebook does work - if you have a question it is natural to just want to ask your question and hear from other people in real time rather than read through old threads and try to find the relevance to your particular situation. If I was just starting I would likely turn to Facebook long before IHD, so with fewer people coming in each person who drifts away will be noticed.

Not having to wade through political banter I think would be much easier for the new folk to navigate around.

I am not saying there is anything wrong with the back and forth, for those who want to participate, but other sites have solved this issue by having a separate section that you have to sign up for...to see those posts at all, otherwise they don't show up.

Anyways, I am grateful for all of the help I have received on this site. That's my point of view.....Carry on! :beer1;
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Rerun
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Going through life tied to a chair!

« Reply #20 on: October 08, 2018, 04:13:33 PM »

We do have "Premium Members Only" where you have to pay to be on that section.  At first it was pretty popular but I'd have to ask Kitkatz how it is doing. I wold post on there if I had something I didn't want shared all over the place.
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kitkatz
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« Reply #21 on: October 09, 2018, 12:02:07 AM »

The premium section ended with the move tot he new servers and hosting.


kitkatz-admin

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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
MooseMom
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« Reply #22 on: October 09, 2018, 01:58:36 AM »

Xplantdad, I navigate around the site in exactly the same way as you do, and if the most recent posts are all political and I just don't want to go there, I just keep scrolling through until I find a thread to which I think a contribution from me might be useful.  The vast majority of topics are entirely irrelevant to My personal situation, but I still manage, and I am not a master of message boards.  In fact, this is the only online message board in which I have ever participated.I

I guess my point is that newcomers will probably have to wade through "irrelevant" stuff anyway.  I know I did when I was  newbie.  At that time, there was no Pre dialysis forum, but Okarol saw that there were so many new members who were not yet on dialysis and so had their own unique concerns.

Anyway, I see your point and am only trying to provide a little background info.

If the admins feel that the political forum has become an obstacle in any way, they will remove it, I am sure.  I would hate to see that, but the admins know best.  I personally would not like to be relegated only to discussions about proving that whoever loves ihd most will post last or Let's compose a story three words at a time or What are you watching on tv right now! Lol!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #23 on: October 09, 2018, 08:54:21 AM »

I've never used the facebook site, and as a Canadian I don't take part in any of the political discussions.

I use this site to learn about dialysis and transplant to help care for my husband, vent to people that understand, and share our experience in the hopes it may help someone else someday.
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kristina
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« Reply #24 on: October 10, 2018, 02:03:39 AM »

A few years ago our local police arranged a crime-prevention-information-day and there it was mentioned, that many people "got themselves into a lots of bother", because, through facebook and similar sites etc. they let their family, friends and acquaintances know, when exactly they were going on holiday and for how long etc. and ... after their holiday had ended, they came back to an empty house, because the burglars were collecting information through facebook etc and it informed them, how much time they had to remain unobserved whilst helping themselves to all the goodies in the house etc. ... It was also mentioned, that many people proudly take photos of themselves with their latest purchases and post it and therefore ...  :grouphug;
Take care !
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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