I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: kitkatz on October 06, 2018, 01:20:37 PM
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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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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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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.
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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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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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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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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.
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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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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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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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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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Not a Facebook user and don't want to be. Love this site, tho.
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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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Don't use Face Book and never will. Large congregation of opinionated narcissistic idiots interested only in their own ilk.
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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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Everyone has a right to their own opinion.
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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.
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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 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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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: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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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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The premium section ended with the move tot he new servers and hosting.
kitkatz-admin
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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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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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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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Early on in my cruising around IHD someone mentioned the "show unread posts since last visit" option at the top of the forum home page. Since then that's what I use unless I'm searching for something specific. I just skim the new posts and avoid the "thick skin required" areas (I don't have thick skin, I had to leave even the football section, ha!). I have been to the FB page a few times, and went back to visit the other day after reading this thread. That format doesn't work for me, it means I have to skim through a lot of posts. I'm always thinking about quitting FB anyway. I continue to check in on these IHD forums because kidney disease is for life and there's so much honest info here. There have been a couple of times I got my feelings hurt because of sharp replies, but I got over it. I miss some of the people who have disappeared who were active on here when I first came to IHD. I don't think there's anything wrong with the organization and running of this site. There always seems to be a lot of activity, at least on some subjects, which isn't true of some other forums. I appreciate the people who volunteer to keep IHD up and running and those who participate.
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... I very much miss some of the people who have disappeared and were very active when I first came to IHD.
At the same time I am fully aware that dialysis is a life-support and because of that I have been hesitant to find out more about what happened to them and I very much hope, they are still with us.
I also appreciate all the people who volunteer to keep IHD up and running and I thank them very much for their thoughts and all their input.
Many thanks from Kristina. :grouphug;
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I haven't posted in quite a while, but I still read, read, read, and this site is invaluable to me, as I'm sure it is to innumerable others. FB will certainly never replace it. Where people gather, there will be disagreement, and disagreement can easily lead to harsh words and hurt feelings. As several have stated, we're adults and should be able to embrace that and police our own behavior, within the context of site rules. I don't envy any of the moderators or admins - it's a tough job with little thanks. My two cents is don't change a thing. I'm so very grateful for what has been built here.
:2thumbsup;
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Just want to say, "Thanks, thanks, thanks for IHD!"
I am grateful for this forum. Grateful for the knowledge, the experience and the overall helpfulness that I've encountered here. Glad to be able to share what I've learned, too.
I'm here for renal stuff, so I just don't read the political threads - can't comment on that at all.
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Alright. Where to start?
I joined this site I think almost 5 years ago. It was so wonderful (not really in WHY we were connected, but wonderful to find a group) to see so many knowledgeable people. One could really spend tremendous hours at a time reading old threads and learning.
While I had ESRD, my main concern for questions was my grandfather. Since he passed away, that need left, but I appreciated the outside input.
Most of my dialysis was done at home with a private nurse so I drifted from here. To be honest, my dialysis was easy breezy so I didn’t have any questions. No concerns, no need to post.
After tx, I came back because I knew there were wise people. And then, I drifted away again because in the rare case, some people can’t manage their tone.
Yes, sure, we all have free speech but there is a thing called common courtesy that is lacking (generally) on the Internet. You can be sharp but really, what is the intent behind it?
If you don’t have anything nice to say, or it doesn’t concern you, you don’t have to add 2 cheap cents “just because” you can.
Am I a snowflake? No. I worked in economics so I can take/give harsh words... but not when it’s not needed. In life, I don’t back down but where does being rude, on the Internet, on a chronic disease forum get you? No where and you look like a used Wet One. That wiped something unpalatable.
Have I been terse with people? Yes. And for that I apologize, primarily to Moose Mom.
As for the political section, I don’t get involved. Sure it says thick skin needed and I feel the facelessness of the Internet lets political furor come out stronger. But, that’s the way political discussion goes and as has been said, we’re not just underachieving kidneys and life support! Besides I’m Russian so.... hahahaha.
There’s a thread about the whole collusion stuff. It doesn’t bother me with my outside eyes.
Not a fan of IHD FB page. Are there good questions there? Sure, from time to time, other times the quality just isn’t there. I’m not a member but I browse it periodically. However, I appreciate that it has traffic and members can get "real time answers” as has been noted.
Like the others, there are some older members that I miss. Some have passed away, others have less concerns once transplanted and then, yes, FB usurped many.
I agree if we want to change, and have membership, it’s up to us, as a community to do it, and leaving doesn’t help. (Yes, I’m part of that problem.)
Some members are sassier than others. That’s fine and good. No need to play tea and crumpets if it doesn’t suit you. But, comments with intended rudeness or vitriol, yeah, not cool.
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Yes, sure, we all have free speech but there is a thing called common courtesy that is lacking (generally) on the Internet. You can be sharp but really, what is the intent behind it?
My thoughts on this are:
In the political boards, let the dogs fight. It is impossible for long political debates to run without some occasionally getting nasty. The alternative is to delete the political board.
On the other boards, if someone offends you, complain to the moderator. If you respond sharply to an offence, the other side is liable to reply even more sharply, and things will get worse. Both of you will look bad. If you ask a moderator and they think you have a point and intervene, all solved without a problem.
And, yes, that does apply to me also. There are some things I get really irate about. I don't believe I have ever stepped over the line, but I am biased, others may disagree. For example, in another thread I took exception to two other members posting false information about garlic. This really annoyed me because (for reasons that made sense for them) they were trying to stop people eating garlic. Garlic has a hell of a lot of health benefits, and if you convince someone in our condition to stop eating it, you are shortening their life expectancy. So I got very angry. Now considering the seriousness of the argument, I don't think I went too far. The other two members may disagree. From their posted responses it looks like they did, and they had every right to. But to anyone reading the thread they will see it as one of them being deliberately rude about me, and the other thanking them for their rudeness. This makes them look bad. And even if I had been in the wrong, it would still have made them look bad. What they should have done was complain to a moderator, if the moderator thought I had wrong to have posted what I did, edit the offending message and tell me off. If they agreed with me, then leave it as is. No one would have looked bad.
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Hi Paul,
I agree with your post in its entirety and I fully support the use of garlic. Russian penicillin, as they say.
That said, I should have explained the use of the word "sharp" better. My fault here. By sharp, I don't mean sharp-tongued but rather, sharp as in we can bluntly tell the truth. For example, "That pump speed is dangerous! What are you doing?" or "Are you mad? Licking doorknobs as a transplant patient is an insane idea!" However, I concur with you in that the battle of sharp v sharp has no winners.
I wouldn't want to see the political board go, even though I don't use it, since it has produced interesting points. We have to face it that all around us that the political culture is wildly partisan so we can't expect kumbaya on a forum of diverse people. Maybe just attempt to be nice in such a heated fury. In my opinion, which is worth a handful of fuzz, sure, battle it out politically, but as long as we come together to support each other for renal support and questions at the end of the day, that's the key. Don't let the animosity spread that we miss the point of this site: renal support! My my, it sure sounds like I had an Ativan and a chai tea with all this peace and love. ???
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But Paul, the political forum is unmoderated.
There is nothing wrong with saying, "I am sorry.". We live in uncertain times and in difficult personal circumstances , so it is understandable that people here may feel frightened or lonely or angry or as if they don't quite understand what is happening around them. We all have had bad days for any number of reasons, and sometimes it is too easy to take it out on a poster. We are not perfect, although I am very close to bring so lol!
I am sure we all try to put out points across in what we think are reasonable tones, but people's feelings can still get hurt. Maybe that person was having an even worse day than you! If you enter that forum with a mission to change someone's mind , well good luck with that. But if you are truly interested in not only what someone thinks but also why the think that way...out you can take yourself out of the occasion, then the political discussion can be truly facinating.
There is no reason to have a mind if you can't change it.
I know what I think, and I get easily bored with myself. So I genuinely get a real kick out of other people's thoughts and insight. And i am more than happy to have my mind changed. I personally am neither wedded to not defined by my opinion.
Ukranian tracksuit' idea of some chai sound like just the ticket!!! Thanks for that suggestion!
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But Paul, the political forum is unmoderated.
I'm aware of that, my point was to the effect of "people will say bad things, you have either got to let them (verbally) fight it out or close the board down."
There is nothing wrong with saying, "I am sorry."
Yeah, but how often do you see that phrase on the political board?
I am sure we all try to put out points across in what we think are reasonable tones, but people's feelings can still get hurt.
OOh yeah. I once made the mistake of posting how I thought America could become great again. One member objected to my asertation that America is not still great (and at my examples of where it is not great anymore), they got nasty on the thread (understandable, but over the top), however they could not let it go at that thread. If I have a serious disagreement with anyone on any board, they often jump in just to use it as an excuse to have a go at me. Occasionally bringing down a valid disagreement by adding insults to the discussion.
So I genuinely get a real kick out of other people's thoughts and insight.
Not being American, I can read the political board as a sort of "soap opera". Whatever Trump does will not affect me, so I can sit back and eat popcorn while America burns. If the threads were about Britain I would "have a dog in the race", so things would be a bit more serious for me.
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I have said "I am sorry," most recently to rerun . I can't speak for anyone else because I don't tend to keep score.
I would argue that under the cloud that is Brexit, you do have a dog in the race that is US politics, especially in light of the current America First mindset that will drive US trade and foreign policy. If the UK comes away with "no deal", you're going to need all of the non EU partners you can get.
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By the way Paul, I am sorry that you have felt piled upon at any time. If I was ever the cause of you feeling that way, I do apologise ..If it happens again, please feel free to call me out, ok?
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I have said "I am sorry," most recently to rerun .
Yes, but sadly you are the exception that proves the rule.
By the way Paul, I am sorry that you have felt piled upon at any time. If I was ever the cause of you feeling that way, I do apologise ..If it happens again, please feel free to call me out, ok?
No it wasn't you. As a general rule when reading posts like that and feeling you have to apologise for it, it probably isn't you. People who post like that tend to feel they have a perfect right to do so, have no intention of apologising, and often don't even realise it is them who is being talked about. If you see a comment like mine, and are feeling guilty, don't do so. The fact that you are feeling guilty shows that you are probably not the person they are talking about.
I would argue that under the cloud that is Brexit, you do have a dog in the race that is US politics, especially in light of the current America First mindset that will drive US trade and foreign policy. If the UK comes away with "no deal", you're going to need all of the non EU partners you can get.
Oh believe me, Britain is screwed ten way to Christmas over this. I't ain't gonna take a friend like America to save us, we need a lot more than that.
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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.
:Kit n Stik;
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No idea why so many people are complaining. I look at messages on the Internet as if you are bothered by them do not read them. Use to be on Facebook but was getting tired of the censorship taking place with messages being blocked or being banned form the Facebook page itself because someone did not like a view point that was made.......
Don't let messages get to you. If they do get to you then may be you are the one who should leave.
Ken
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After being a mod and an admin on here for 6 years, I don't post much. My daughter Jenna is my connection to dialysis and that's why I joined here in 2006. I miss so many of the people, some who died, some who don't post anymore. I still think that IHD is the best resource in the world when it comes to dialysis. There's great threads about recurring topics that are so helpful, especially to people new to dialysis. I hope this site lasts a long time. As far as facebook goes, I still help admin the IHD page and group. Some days there's nothing but complaints about a post or rude comment. Mostly we let people comment as they want, and if we get a troll or spammer, they are removed. I really appreciate Kitkatz and Rerun and the other mods that keep this site going. :cheer: :cheer: :cheer: :-*