My life with dialysis and kidney disease
Archive for October, 2005
Insert Clever Cliche Here
Oct 1st
I’m tired of saying "sorry I haven’t been writing here" so I won’t.
Well with the demise of the Brumley Boards I’ve been searching for other support related kidney sites. The Brumley boards were atrocious at best, but still served an important role by offering support to those who needed it. Unfortunately the people running the place knew next to nothing about hosting such a service, and as a result you had un-moderated membership coupled with totally censored posting.
Since the service lacked the ability to control membership there were people attacking other people constantly. It was really sad to see a vulnerable person 3 or 4 weeks out of transplant be told by some loudmouth "you don’t deserve that kidney". The answer from the moderator, was just to delete whole threads that he/she didn’t agree with, rather than a clear set of rules. It appears the software they were using (a CGI driven forum??? yech!) was antiquated and not able to handle any administrative tasks. Rather than upgrade to something much more advanced (like PHPbb which is open source, and free) the management decided to just arbitrarily start deleting things.
I had enough personally when I had a few posts disappear just because they were off topic (again, no set of rules to state that such activity was frowned upon).
So, long story short: I found the dialysis_support yahoo group, and there actually seems to be some pretty useful information there. Most of the people understand it is their individual responsibility to take care of themselves, and seem to have great knowledge and experience with regards to Hemodialysis, Peritoneal dialysis, Home-Hemodialysis, and Transplant.
To subscribe you must be a member of Yahoo Groups (which is quick, painless, and FREE). Then visit the dialysis_support homepage and click "subscribe".
You can choose to either receive email (it is after all an email listserv rather than a forum), or you can read the messages as they are archived on the site. You might prefer the latter if you don’t want to receive ~30 extra emails a day.
The list owner seems to strive to provide a place for education and awareness, which I think is very important. There is however an underlying sentiment that OT (off topic) discussions should be had elsewhere.
I understand that with the limitations of a listserv, you don’t want people sending a bunch of "spam" through the system. It is however, crucial when offering support to people, to have a place where they can just vent, and talk about the weather, and whatever else.
While we need questions answered regarding our treatment, we are often just looking to be around like minded people, or people who have had similar experiences. We don’t necessarily want to talk about kidney illness, but want to talk with people who know where we’re coming from about politics, religion, cooking, fine wines… the list goes on and on.
This is an area where I see the Tollidee forums offering something a bit different. Obviously I don’t have the 800+ subscribers that dialysis_support does (13 forum members, and 2 blog subscribers at last count). But I do have a place where people can come without some of the limitations I see with other support groups.
How do I get people here I wonder?
I tried repeatedly to make this place known on the Brumley Boards, but people just thought I was there to steal membership. That wasn’t my intention at all, rather to provide another place where people can gather.
….
Wow…. so I started off by noting the "demise" of the Brumley Boards. They have been offline for some time now. I just checked, and they are back up! Astounding… They go down, and come back up with the same software, and the same problem-members stirring up trouble.
It’s absolutely beyond me why anyone stays there and feeds into it, when two upstanding people (globaldialysis.com and myself ) have offered places safe from these obnoxious hooligans.
Oh well… *sigh*