Where is everyone?

[jeannea]

So many of our regular commenters have gone missing. Did they get better and move on? Did they die? Did we bore them or were we mean to them?

I guess I've become so tired of the meanness on the Facebook version of this board. I worry we have driven members away.

[kristina]

That is very interesting jeannea. I was wondering about the same question...

There are quite a few IHD-members who had a transplant and now we hardly hear anything from them anymore...
I was wondering whether their transplant has made them independent again and they are very busy to continue with their careers?
... Or they continue after the transplant with their “old life”, as it was before kidney failure and dialysis
and they don’t want to be reminded of their dialysis days too often anymore?

I do hope they are doing well and I would love to hear from them sometimes... 

[obsidianom]

I have noticed a big drop off here over the past few months too.  There are a lot of people over on facebook. I dont like that as much. I prefer this .
I still think we have a lot to offer here. 

[cassandra]

I'm actually getting worried. Like I miss Cariad, who was unlikely to go on FB, and has her transplant a long time.

[MooseMom]

For what it's worth, I'm still here but don't post unless I have something worthwhile to contribute to either pre-dialysis or transplant members of IHD.  So far my tx is doing well and I've had no problems, so I've not had any reason to post questions.

I've spent quite a while visiting friends and family in London so haven't been online very much.

I've never been to the IHD FB page.  Does it differ much from this site?

[SooMK]

I've been missing the people I have come to think of as "regulars" too. So glad to see you here MooseMom. It also seems like there's just fewer postings in general lately. I briefly checked out the FB page but I don't care for the format.

[Joe]

I'm kind of in the same space as MM, I'm cruising the boards regularly, but don't always respond unless I feel that i have something different to add. I will try to be better about contributing to the overall community. My transplant is doing very well, I have my 1 year clinic appointment on the 10th of November. My donor had hers 2 weeks ago and everything is going very well with her, thank heaven.

[Jean]

I agree, the FB website is not to my liking at all. I like IHD much better. I will always wonder what happened to Kickstart and YL Guy and others, too. Wish we did not have to have our chat room turned off, thanks to the people who cant control themselves. Oh well, this is still the best.

[PrimeTimer]

I'm kind of in the same space as MM, I'm cruising the boards regularly, but don't always respond unless I feel that i have something different to add. I will try to be better about contributing to the overall community. My transplant is doing very well, I have my 1 year clinic appointment on the 10th of November. My donor had hers 2 weeks ago and everything is going very well with her, thank heaven.

Congrats on your (very soon-to-be) first year anniversary of your transplant! Hope you post about it and that it is all good news.

This is an example of why I like this site so much. It is BY FAR the MOST informative and the only reason why it is, is because people are willing to share their experiences. Thanks to everyone!

[del]

I'm here too but don't post often!!

[okarol]

I sometimes send a PM to people I haven't seen post, I am sure they'd like to know they are being thought of.
I should update Jenna's status, will find my thread and add to it.
  

[kitkatz]

I find the facebeook IHD.com site to be full of people who are mean to one another, so not a whole lot of commenting over there. I think it may send the wrong ideas about the home site being supportive.  It worries me that people are not coming over the the main site.  I have always found this site to be very supportive when I needed it.  God knows I have had a busy two months so far so I have not been online too often to post.  With a 50th high school reunion for Victor and two weddings to get through, I have traveled to three states.  I want IHD.com to flourish and be as strong as Epoman wanted it to be.  It takes the entire community to make this site be successful. 

[PrimeTimer]

I dunno. Maybe we should send Darthvader to "Alert all commands and calculate every possible destination along their last known trajectory..." 

[del]

I don't like the facebook site much either!!  It does seem like more people are posting there though.  I am guilty of reading posts but not taking the time to respond on this site (don't post on the facebook site at all or even read it much). 

[Rerun]

Because this site does not require Registration to lurk we have a LOT of "Guests" on all the time who get information.  Right now we have 60 guests and 4 members on the site.  If no one else EVER posted but this site remained up and running it would be a wealth of information to someone just starting dialysis or wondering about a transplant or interested in NxStage.  That is what Epoman wanted.  We also have members who have never posted.... shy I guess. 

This is still the best site ever!          

[Razman]

I'm still around a look almost everyday but I don't log on ( I know I'm bad ).   Look on Facebook as well.  My kidney's are 'hanging in' and if I can keep the loss to be the same rate I could last a long time.  I must keep my protein , phosphorus and potassium and sodium very low and and I have to watch what I eat but it is worth it.  I don't know if I could ever handle dialysis.   Anyone who can is a hero.

[jeannea]

Good to hear from all of you. (I was wondering about you MooseMom.) I had tried to comment on the FB version but so many are mean and nasty. I worry it makes people think we're the same over here. Then one of the new moderators over there posted that it wasn't a support site. Weird.

This site was amazingly helpful when I started dialysis. I'm really glad it's here. Rerun, you're right about the info being here to read even if people don't post.

[talker]

So many of our regular commenters have gone missing. Did they get better and move on? Did they die? Did we bore them or were we mean to them?

I guess I've become so tired of the meanness on the Facebook version of this board. I worry we have driven members away.

Along similar lines of (regards this new Topic here) thoughts, was:

http://ihatedialysis.com/forum/index.php?topic=18315.msg488079#msg488079

While I'm a relative newbie here, have really spent time reading the many posts here.

Now that the door to further thoughts has been opened, and the risk of being  pilloried for the saying, here goes:
Had noticed a number of trends taking place here.
While 'some' response comments here, are not intended to 'hurt', many do just that.
No, not just 'the thin' skinned, sensitive, folks.
Have detected sarcasms and what appears as downright cliquishness , in some instances.
I may be the only one with this perception.
Granted, it may not be by design that these things happen, yet over the long haul certain 'perceptions' did come to the fore.
Realized if I didn't like it, I should just move on.

Now, don't misconstrue what is being said here.
There are vast amounts of valuable dialysis and other experience's listed.

Great.

BUT...........

Yes, I've noticed, that I've throttled down my normal enthusiasm, and expectations doing any posts here.
Why!
Well, had to dig down deep, and as stated above, certain 'little' things, kept causing me to reword what was going to be posted. Spontaneity was gone.
So I went more toward the 'games', with very little responding to posed Topic questions.
Did read, way back in this forums time, that religious / spiritual type posts, caused some problems.
Did do a few posts here with my usual style, but soon dropped back to highly rewording the way my words came out.
The joy of responding with positive hopes, and posting my way was missing. 
Yes, do realize it was self imposed.

Bares repeating:
               Now, don't misconstrue what is being said here.
      There are vast amounts of valuable dialysis and other experience's listed.
So here I am.
Yes, is a fine line between fact, fiction, fantasy, myth, and engineered deception.
What might be part of the solution!
Well, I endeavor to NOT rain on anyone's parade by my choice of words.
One can be gentle, as opposed to harsh, when voicing an opposing view point.
Do like to toss in a higher Source at work, even in the face of not fully understanding the 'why' of it all.
Regardless, will not enter into any of the usual 'my pa can whip your pa', endless back and forth battles, that happen under these kind of forum circumstances.

What next! Not sure at this point.

[MooseMom]

I had tried to comment on the FB version but so many are mean and nasty. I worry it makes people think we're the same over here. Then one of the new moderators over there posted that it wasn't a support site. Weird.

There is something about FB that seems to bring out the worst in people.  I've withdrawn from all FB kidney support sites as a result.  IHD's website is the only social media site in which I participate with any regularity.

I don't tend to log in often, but I do read fairly often as there are certain people here I have "known" for quite a while or who may be in the same situation as I am in; I like to keep tabs on those particular members.

It doesn't help that the email notification of PMs function no longer works.  If I get a PM, I won't know about it for months!

[monrein]

I too check in here pretty regularly and feel somewhat guilty, although that is too strong a word for it, that I contribute way way less than I did before when I was on dialysis. Quite honestly it is because I don't spend as much time on the computer. I check in but then I go. I'm one of the very lucky ones for whom life is really good with a transplant and my energy gives me a whole new active life that I'm very aware could disappear, poof, just like it did before and I don't want to miss a moment of doing things. As for the Facebook version, I feel that one never really gets to know people there, kind of superficial and frankly often quite weird.
I do think of everyone here very often, care just as much as I always did and also know that when we are not feeling great it can be hard to hear about other people doing what we would like to be able to do. I wish I were a better typist so then I could whip off quick responses to some of the posters that I feel I could contribute something to be of help to them.
I do see a fair number of people on regular Facebook so know what's going on with them a bit there.
This site remains the best for in depth support and information.

[cassandra]

MM, Monrein, Del so nice to hear from you.

Love, Cas

[kristina]

I'm still around a look almost everyday but I don't log on ( I know I'm bad ).   Look on Facebook as well.  My kidney's are 'hanging in' and if I can keep the loss to be the same rate I could last a long time.  I must keep my protein , phosphorus and potassium and sodium very low and and I have to watch what I eat but it is worth it.  I don't know if I could ever handle dialysis.   Anyone who can is a hero.

Hello Razman, good to hear from you and I am glad that your kidneys still serve you well ...
I don't quite know, how I shall be able to handle dialysis when it comes to it and I do hope for the best...
I send you my best wishes and good luck from Kristina.

[kristina]

I am very glad to read that Joe, Del, MM and monrein are doing well.
It is good to hear from you,
best wishes from Kristina.

[MooseMom]

What monrein said...

[KarenInWA]

Like some of the others on here, I visit here almost daily,  but don't respond often. Maybe I should change that. November 23rd marks 3 years for me and my kidney, Lynette. I go in this Wednesday for my 3-yr post-op visit. My kidney is still hanging in there after being permanently injured by a biopsy less than 4 months after transplant. My GFR is anywhere from 15-17, my creatinine is anywhere from 3.0 - 3.3. I work FT, live a normal life, and faithfully take my meds. I admit, I feel like I did in my "normal" days. I like to travel when I can, take advantage of opportunities when I can (like to go to a show or a concert). I have been back on the list since last July, but am doing very good otherwise.

KarenInWA