My dialysis center's complaint about IHD.com

[Mizar]

 I had to go to My Thesaurus, to come up with a New Name for us, the Suggestions, it gave Me were  ------

 I Truculent Dialysis

I Enmity Dialysis

I " Spit Upon " Dialysis

None of these are Making Me, feel, " Warm and Fuzzy "  We better stick with what We Have.

[AguynamedKim]

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?

[RightSide]

I think it's a great name though, because people on dialysis get it.

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.

I don't think IHD is negative--except for one or two things.

I definitely do NOT like the slogan at the upper right of this webpage, "A Place to Vent about DIE-Lysis."  Is that intended to suggest that when you're on dialysis, you feel like you're dying?  I don't.

For this site to say it's about "DIE-Lysis" would be like a dentist having a sign in his office that says "We Cater To Marathon Men."

I wish the "DIE-Lysis" line could be removed.

[MooseMom]

You know, RightSide, that's actually a very good point.

[Desert Dancer]

I second (or third) RightSide's point. I know WE know this place isn't negative, and we can tell that to people all we want. But if a social worker comes on here and sees that line about DIE-lysis, well, first impressions stick.

[glitter]

I think that line cracked Epoman up- it made him laugh at his own circumstance. While wanting people to feel comfortable, he just did not gloss over the truth as he saw it....and I remember how upset he got over being 'censored' on davitas sites- which is why IHD was born.  just a thought...

[Epofriend]

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?

Here's the shirt:

www.ihatedialysis.com

because

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

was too long

 

[Rerun]

I think the DIE Alysis part was due to ..... the thought that without it we would die and just making fun of the word.  And since Epoman is DEAD I think he spoke the truth.

We need to keep it.

But I love the www.im.not.so.fond.of ........   

[okarol]

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?

LMAO!!

[carol1987]

I felt that way about the die_alisis line too  but we need to honor epoman  besides just look atthis thread....many of us need the silly dark humor to get by...lol

[boswife]

  Oh my goodness Im so glad i had a moment to read tonight...  This is down right halarious    Brought hubby and i to tears laughing which is a great thing!!    We loved it all.....  oh, and about the DIE alysis.....  i felt icky when i saw that, but knowing it was and Epoman thing, im gonna have to adjust my thinking   

[Bruno]

We haven't got a notice board but when I mentioned this to my wife she said to stick it up my Fresenius.
(I think)

[Ang]

without  knowing EPOMAN, i suggest the DIElysis line is him being truthful and pointing out that  aome of us are fortunate and some will die , as sure as night follows day

[RichardMEL]

My IHD tshirt became infamous at my unit!!  I think half of them didn't read the .com and didn't realise it was a community website(despite me telling them SO many times!). They thought it was me just saying I hate dialysis. My neph (prof of medicine here) always asked me about it if I wasn't wearing it, or he'd greet me and say "How are you - apart from hating dialysis?"  It was all in a good natured way except when a couple of nurses in the unit somehow got upset and thought the shirt meant that I hated their unit and/or them, so I had my own shirt made up that said I loved the D unit (I posted a pic sometime back).

The theme went on post-tx. One the first main ward round after my transplant, where the whole team file into your room and do the whole medical thing, in troops the prof in front, with the hangers on headed out the door, and they do the review and all the stuff, then before they go he says "So where's the 'I love transplants!' tshirt?  I told him I was working on one. Actually I've modified that idea to do a "donatelife.gov.au" sweatshirt because our local donor registry doesn't seem to have any kind of apparel to help spread the word -so going to make my own up. I do have a shirt I made that thanked the ward staff for looking after me during my transplant, but it's a bit lame.

btw I ordered a week or so back some transplant shirts from the IHD cafepress store, so waiting for them to show up

I do see rightside's point about "DIE-alysis" but I also feel it is important to keep it the way Epo set it up. We must honour his memory and what he wanted the site to be.

[tyefly]

  The same response at my clinic.....     at least when I started.... but now  after many months  and I kept giving them more information, not only about this site but   Bill Peckham site and Hemodocs,  and Nxstage many others... they became more receptive....   but then this clinic is not one of the big ones....   

   its like    The Doctors  show   says.....   Changing one body at a time.....

[Riki]

I've mentioned this site to my nurses a few times. They thought it sounded great.  One of them got a great kick out of the"how to get comfortable in the chair" thread.  I don't think any of them would mind if I posted the flyer on the bulletin board.  I think that the problem with that would be that most of the patients in my unit are older (60+) and I'm not sure how many of them are online.

[Des]

Not allowed to go up unless it has come from Fresenius head office...... 

[Hazmat35]

I know that I have copied some information from this website and sent it to the Administrator, the Social Worker and the Dietitian at my center.  They said that I have sent them some valuable information and interesting topics.  They have since become members themselves. 

They also shared the information with the Nurse Practitioner and they love it!   

I think that just because of the name, people get the wrong idea at first.  But you can't judge a website by the front page. 

[noahvale]

^^

[RichardMEL]

I think there's also a general fear, specially in the US, but in other places too, that getting information from a site like this can be bad - or moreso that they would fear being sued or something if a patient, sees a website (not this one!!! just in general) advertised by their unit, goes there, reads some kind of information and then suffers somehow, and then decides to sue the dialysis unit for "pointing them" to the site by way of having a flyer up or talking about it. That's why some units will only sanction "official" spam that toes the company line and so on - it's all around safer for them.

There IS some merit to that argument. How many people, in general, google when they are feeling some symptoms and potentially can make things worse when not treated by a doctor but thinking they have X when they may in fact have Y, and so on.

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.

[Bill Peckham]

I think not having official sanction is a feature not a bug. I've talked about IHD in many settings with people in the industry and I always say it's the first line of every conversation when someone shows up looking for information - by using it as the URL the site is saying Yeah I get that what else do you got

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.


Any way how about a URL from Monty Python?
DialysisYourMotherWasAHamsterAndYourFatherSmeltOfElderberries.com

[RightSide]

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.

At some point, we need to think about getting IHD on Facebook too.

[glitter]

IHD is on facebook- I think I am a member..when the site when down when they upgraded that is how I got updates.

[glitter]

hmmm maybe not- i couldn't find it....

I get why people don't like the DIE-YLIS- I do, Epoman knew his mortality was not going to be as long as his life would have been if he hadn't had so many rough breaks, I always thought the tongue in cheek,  dark humour was his way of dealing......and then he died. So this place is his legacy, the things he personally did I would hate to see changed.
 I understand wanting to be positive, and living a positive life, Epoman set a great example with his life. I think he liked that sign.

[Riki]

The thing that I always see when I first log in, is the "we're not negative, we just hate dialysis."  I think that is a very true statement.  I certainly don't know anyone who wakes up in the morning saying, "oh goodie! I have dialysis today!" unless they're being sarcastic.