Oh, absolutely! When I mentioned this site to my clinic they were horrified and thought it was just the most negative thing they ever heard.
My 'Dead Woman Walking' shirt (worn the last day of training) sent them right over the edge. ;D
Rightside, get a few IHD t-shirts and wear them to dialysis. You can become your own bulletin board. :2thumbsup;
I asked her if she could think of a less negative name for the site. She couldn't at the moment, but she promised to get back to me on that.
Apropos to my situation, I'm going to make a shirt that says: "Dialysis: I can do it in my sleep!"
I think it's a great name though, because people on dialysis get it.I don't think IHD is negative--except for one or two things.
In comparison, if I say "I hate the dentist" everyone gets it. No one says "oh you're being negative," because dental work can be very uncomfortable, sometimes painful. It's necessary, and we do it to stay healthy, but no one I know enjoys dental appointments.
Perhaps, www.im-not-so-fond-of-dialysis-but-appreciate-it-but-it-can-really-suck-sometimes-but-at-least-theres-a-bunch-of-really-supportive-people-that-tell-you-the-real-truth-about-dialysis.com?:rofl;
Perhaps, www.im-not-so-fond-of-dialysis-but-appreciate-it-but-it-can-really-suck-sometimes-but-at-least-theres-a-bunch-of-really-supportive-people-that-tell-you-the-real-truth-about-dialysis.com?:rofl; :rofl; :rofl; LMAO!!
I can see both sides of this. As someone who worked in PR, the name and the line including "DIE-lysis " are not positive sounding and could scare or turn off many who aren't familiar with what this forum is all about. But, as a long-term patient, I get it. I also understand what it meant to the founder of the site and how those of you who keep it going want to honor him.I don't think that it's in any way dishonoring Epoman's name or contribution, just to change one slogan. I'm sure Epoman would want us to do whatever we can think of to increase participation in IHD.com. I'm more concerned about the "DIE-lysis" than the name of the site. And changing one slogan is much easier than changing the name of the site at this late date.
Unfortunately these days a lot of providers and corporate entities have to protect themselves in this way because people can and do sue for stuff like that - as ridiculous as it seems.
I'll fess up to something that only Meinuk knows - Epoman banned me, not under my name but under a screen name I first signed up with because I wasn't sure I wanted to participate - I just looked it was August 09, 2005. Anyway I came back, as myself and introduced myself (I had registered before he started the you must introduce yourself rule but he didn't see it that way ::) ) it turned out I had registered and mostly looked in on IHD from work so I could never look at IHD from work until recently. You'd have to be a premium member to see any of my posts so let's see who figures it out first - no helping Meinuk.Bill, were you... (PMed, so as not to ruin it... if I am right)
Any way how about a URL from Monty Python?:clap;
DialysisYourMotherWasAHamsterAndYourFatherSmeltOfElderberries.com
no helping Meinuk.
I'll fess up to something that only Meinuk knows - Epoman banned me, not under my name but under a screen name I first signed up with because I wasn't sure I wanted to participate - I just looked it was August 09, 2005. Anyway I came back, as myself and introduced myself (I had registered before he started the you must introduce yourself rule but he didn't see it that way ::) ) it turned out I had registered and mostly looked in on IHD from work so I could never look at IHD from work until recently. You'd have to be a premium member to see any of my posts so let's see who figures it out first - no helping Meinuk.Bill, were you... (PMed, so as not to ruin it... if I am right)Any way how about a URL from Monty Python?:clap;
DialysisYourMotherWasAHamsterAndYourFatherSmeltOfElderberries.com
no helping Meinuk.
No worries Peckham, your secret is safe with me.
And what a good way to boost Premium Memberships.
Now, for my opinion on the name... Yes, it is can be considered a barrier BUT I look at is as more of a filter. As Kickstart noted, we embraced the name - ultimately. The fact is, we are here, the industry and the Networks know about us. Slowly, individual clinics will know about us, and we aren't going anywhere.
ALL advice should be taken with regard to the source. Just as every individual on dialysis and with a transplant wants to be treated individually, we all have distinct needs. Medically and emotionally. The internet and its value as a peer support venue is being taken more and more seriously. (Just look at our Member's thesis in Australia. (sorry, I am blanking on your name))
There are great sources for formal CKD education like www.kidneyschool.org - which I think should be mandatory for anyone on the internet with CKD (and those who love them).
And oh so many others. I'll plug DSEN now with Bill's big compilation of knowledge and resource links:
http://www.billpeckham.com/from_the_sharp_end_of_the/ckd-links-and-resources.html
I see IHD as being peer to peer support, (and invaluable at that - the best on the web IMHO). I also see IHD as an unedited,uncensored REAL picture of what is going on in the trenches (although just a microcosm).
I look at what DaVita has done with their new "Social Networking" and I laugh. I wish that they would spend that time and effort on training their staff to be more compassionate, better educated about dialysis modalities and safer. But that is just me keeping Epoman's cynicism when it comes to DaVita's on line message boards alive and well. Anything that is corporate sponsored is bound to be tainted by corporate ethics and shareholder (NOT PATIENT) responsibilities.
That being said, I will tell you that I have day dreamed about IHD being a non-profit, and protecting itself as a 501(c). Is it weird that I just want to form a board of directors and put Zach on it??? Give Karol a corner office, and make Rerun the head of the party planning committee? Obviously KitKatz would run HR(isn't that what the big stick is for?), and Paris would be Karol's second in Command. Sluff would be that partner who is always away on secret business, and Richard Mel would be the overseas director of marketing; Bjanne would handle all of the travel arrangements, and serve as interpreter, as for EpoFriend, well, I'd just give him reign over all of South America... yes, I daydream a lot.
Kidding aside, my fear is that we would risk going the way of AAKP and all the other splinter CKD organizations out there (and believe me, they are splintered). I fear that the minute that IHD starts "Marketing" itself, it will lose itself.
We have had some "out" industry employees here telling us what is right and wrong (in some cases they were wrong). We also have some semi-undercover industry employees posting here, and they have joined in the camaraderie. Most of all, for any that find IHD, and read, I think that their CKD journey is made a bit easier knowing that they are understood, if they take part or not. I am MUCH more of a lurker than poster. In the four years that I have been here, I have posted under 700 posts. So many others participate more than I do, but I have received so much more than I could ever return, and I see that as that as the most amazing gift that Epoman could have given us, a forum to share and help each other along the way.
I say keep the name as it is. Maybe lose the Die-Lysis. Call it IHD when you talk about it, and people will find us. You did.