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Author Topic: Members- Please read and respond from Admin  (Read 10954 times)
SooMK
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« Reply #25 on: October 10, 2018, 12:44:46 PM »

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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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
kristina
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« Reply #26 on: October 11, 2018, 04:15:01 AM »

... 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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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 ...
DayaraLee
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« Reply #27 on: October 11, 2018, 07:06:21 PM »

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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Husband Dx - CKD Stage 3, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
Marilee
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Hubby was a PD Person - I was 'support'

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« Reply #28 on: October 16, 2018, 06:49:27 AM »

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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As my hubby would say, "Don't let what you can't do get in the way of what you can."
UkrainianTracksuit
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« Reply #29 on: October 16, 2018, 08:56:14 AM »

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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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #30 on: October 16, 2018, 11:35:29 AM »

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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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
UkrainianTracksuit
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« Reply #31 on: October 16, 2018, 12:58:37 PM »

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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MooseMom
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« Reply #32 on: October 16, 2018, 03:05:37 PM »

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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"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."
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #33 on: October 18, 2018, 01:27:02 AM »

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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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 #34 on: October 18, 2018, 02:37:25 AM »

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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"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."
MooseMom
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« Reply #35 on: October 18, 2018, 02:42:18 AM »

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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"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."
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #36 on: October 18, 2018, 04:29:52 AM »


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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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Mr Ken
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« Reply #37 on: October 20, 2018, 04:04:43 PM »

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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Mr Ken
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« Reply #38 on: October 20, 2018, 04:17:14 PM »

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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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #39 on: October 25, 2018, 12:27:17 AM »

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: :-*
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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