Name Change?

[Hemodoc]

Dear Noahvale, what credible evidence do you have that a name change would improve membership for IHD. I contend that there are several sites with woefully less members but very user friendly names. Dialysis unfortunately is not of much interest compared to many other websites on other topics. I belong to one that has nearly 50,000 members and over a million posts in about 5 years. There is only a fraction of dialysis patients in the US who utilize self care in the US and exercise independence for their own disease.  Yes, it is indeed a very passive group compared to other patients with breast cancer or heart disease for instance. That was my impression as a doctor caring for all of these groups while practicing and it is even more noted since I started dialysis and learned of the deficiencies of the American system. 

As an advocate, I wish dialysis patients were easier to motivate, but that is not the case unfortunately. The one thing we all hold to is the universal suffering we all experience. If there is negativity  about dialysis, it is not in any manner due to IHD and it's name. Instead, it is the dire practices in our for-profit system instead and the profoundly negative view that nephrologists , nurses and technicians have about their own patients. Overcoming the great disinterest in dialysis and better ways of doing dialysis is a systemic problem that even Scribner failed to overcome.

As far as internet savvy, are you really going to argue that the average grandma in her 70's is more savvy than say a 15 year old kid in high school? Get real Noahvale. Any way that was a good chuckle.  Here for some facts on internet usage in general:

http://www.pewinternet.org/data-trend/internet-use/latest-stats/

 Now, are you also accusing me of being a Chicago, left wing democrat. One more good chuckle. No, old folks are nowhere near as connected as the young kids. I am 55 and most of my friends are in their 60's and 70's and only a few of them use the internet at all and NONE of them, including me has one of those "smart" phone contraptions. I did just buy an iPad because my lap top quick a couple of weeks ago. It has no phone access, just wireless and does almost everything my laptop did so for now, that is all I need, but an iPhone, what for? All I need is an old fashioned phone to talk to people. In fact, I have never once texted to anyone at any time. If I want to connect with someone, I send an email if at home or call.

Now, nitty gritty details. If you are going to change the name, will you also change the URL since that is simply www.ihatedialysis.com? If so, then you would essentially start a new site and yes, Epoman's legacy would be gone. Do you know that I have seen several threads started by Epoman that people still comment on from time to time? Isn't his voice still active in that way alone?

No, what you are proposing does great dishonor to Epoman and what about all the other members who still have threads going today and thus are remembered and missed greatly? Sorry, but your argument lacks any weight of evidence as all the other sites with "great" names are doing far worse than IHD. Where are these 10 of thousands of patients who can't access our site today? In fact, it appears that there is a large percentage of people who found IHD because of the name alone.

If you want to be semi-scientific about this, then let's take an unofficial poll on IHD and see how they found the site. Then let's revisit this issue. My suspicion, the biggest demographic drawing folks to IHD will be IHD itself.

[Hemodoc]

Take the poll. If you see other choices that I did not list, please comment and I will edit the poll. Cheers.

http://ihatedialysis.com/forum/index.php?topic=30986.0

[UkrainianTracksuit]

On a general note to everyone, I feel I am misunderstood frequently on this forum. It's really frustrating. It feels like battling a hydra, because no sooner do I think I've clarified something, I find the further explanation leads to little illumination and even more assumptions and misunderstanding. I have heard others express this same frustration. I once read the advice (on here!) that if there are two ways to take someone's statement, choose the nicer one. I would add "or ask for clarification". It would probably save us all loads of time.

When it comes to dealing with people, our facts are socially constructed.  We shade and colour them according to our views.  I understand that points, especially on the internet, can be misunderstood as we view from our own lenses.  Therefore, I apologize for my contribution to the misunderstanding.  Cariad, I know now and in the future, to take your comments for face value.  That is good to know.  I still stand by my giggling though.   

[gothiclovemonkey]

let me start by saying i havent read the entire thread so no clue whats already been said and all that jazz but i thought id add my two cents
As far as a name change, I think I love the site name. It gets people's attention, whether good or bad, its being talked about....
I know some places dont allow it to be mentioned through them, because its policy. legal issues, we arent professionals, and if something happened because of our advice blah blah blah
but there is nothing stopping you from telling a fellow patient about it personally. I do it all the time, infact the mother of a patient i wrote a note to telling him about this site was so thankful she got me a sweet card with a gift card inside. (i couldnt believe she was so thankful for a simple note saying hey, man, i know this can be rough, if you ever need an ear, im here, also theres this site, etc... it took no time out of my day to extend my aid to him)
I dont know if anyone ive told about this site has ever joined, but i know quite a few have checked it out, so have some techs ive mentioned it to. One tech said she feels like she has gained a lot of patient insight by coming here and reading about patients struggles...

Most people laugh at the name around these parts lol because who wouldnt hate it?? its one of those things you love and hate at the same time i guess... i do love that its available and keeping me alive to watch my son grow, meet an amazing man and marry him (something i never dreamed possible!) but i absolutely hate it. I hate that I have to do it, i hate that i feel like crap all the time, i hate that my arm looks the way it does.... etc etc etc but im SO thankful I am alive, and so thankful that IHD exists.

i found this site just surfing trying to gain info on dialysis because i knew nothing about it. my own dr didnt prepare me for it at all. he sent me a letter after a lab draw saying nothing but "will need fistula soon" i didnt even know what a fistula was when i got that, so it was a rather large shock to learn i would be getting one and doing this dialysis stuff... I had a rather crappy experience in the begininng of this journey....
I found IHD, I laughed when I first saw the site. (and thats typically what people I tell about the site do too) It fairly well sums up how I feel NOW about dialysis, I DO hate it, but I also accept it, and in my own weird way im kind of thankful for it. (not kind of, I AM, but i hate it.) I am sure everyone hates the idea of having to do this, no matter how positive they are, no one wants to do this, but we "have" to. It took me a long time to be the kind of person who can find the silver lining in just about anything. I owe a large deal of that ability to my kidney failure. And if it werent for diaysis, I wouldnt have found this site, and without this site, I would be completely alone.

I want to explain why I said I would be completely alone. (Because most of you probably know enough about me, im a mom, and a newly wed, and i do have family members i see regularly)
I have people I could potentially talk to about all of this but 1. they dont understand, and the ones that try to understand cant fully truly understand, because they havent been there... 2. I dont WANT to talk to them about this. I know that my feelings sometimes border on a 'bad place' because my health blows, and im tired of being so sick all the time. i try very hard to stay positive, and the people here really do help in so many different ways.

Wow I will stop typing now, if anyone made it to the end, i thank you and hope it wasnt tooooo run-on! lol
<3

[kristina]

Well said, gothiclovemonkey

[cariad]

I do want to comment a bit further on this because, as promised, I've now read it, and I find talking about how people come to understand or misunderstand each other fascinating. I could have, of course, worded my original message that kicked this all off more clearly. I was rushed yesterday and should not have even been on here in the first place. I guess my only trouble with your message. UkranianTracksuit, was that I heard a suggestion that I shouldn't take this seriously because you didn't. So if you heard any defensiveness in my post, that was what was behind it, and yes it was a silly assumption on my part and I apologise for making it.

Cariad, yeah, I found humor in the Pravda comment because it was absurd.  Most people don't understand Russian humor, as it is strange, and that's all.  I also found it absurd that a comparison would be raised on this website and I found it absurd that a simple line like that turned into almost an inflammatory comment towards Obsidianom.  Anyone who has wanted to has said their peace on this thread about a name change and wear their hearts on their sleeve.  While we can have different opinions, sometimes, it takes a little respect and tact on both sides.  Nobody should be censored but members shouldn't feel they need to leave [personal feelings or not] because of the way discourse is presented.  So, when all else fails, lighten the mood.  For my PhD, I interviewed quite a few gulag survivors and when things would get really heavy on my part [heavy as in emotional and sad], they would remind me they at least had freedom of speech because they had nothing left to lose.  Even THEY lightened the mood and they'd actually been through hell on earth in an authoritarian regime. 

 
Well, no one should be censored up to a point. There are statements that are well out of bounds. This is first and foremost supposed to be a safe place to discuss feelings, but it doesn't come across that way when someone accuses us of being like Pravda because we won't turn this into the site that he wants it to be. He was not being censored, obviously, he stated that it was his decision to no longer participate. He's an adult and can make his own choices, but it was his choice, no one forced him to leave.

I find what you say about gulag survivors incredibly interesting. I actually worked as a researcher on a documentary about Germans living in my area, and how they contributed to the town. Sounds benign enough, but of course Germans of a certain age living in America have some awful stories to tell. If they wanted to joke about it, fabulous, I can go there with them, but I would never take the initiative. For me, I feel it would have been inappropriate, and that is not to say that you acted inappropriately if you did initiate jokes, I'm sure you did a phenomenal job with your research.

I'm quite aware about the history of Pravda.  And while we're at it, I also know the history of Trud, Izvestia and Bednota!  Over here in Russia, what happened with the presenter on RT was viewed as a publicity stunt for her own benefit.  I am aware RT shaded it to suit their interests but honestly, there are much bigger issues with censorship and freedom of speech here at home.  Again, the RT issue was a laughable matter when seriously simple journalists are having their offices raided, thrown in jail and livelihoods taken away.  I would never see humor in that but I see it at RT.

I'm not surprised that Russia gave a very different account of the incident at RT. Do you live in Russia or Canada, or both? I  thought I remembered Canada from your intro, though I certainly knew you came from a Soviet background and are multilingual. I actually have a very dark sense of humour, and with my numerous illnesses and a lifetime of ESRD, I do enjoy my share of gallows humour. I would not, however, engage in that type of humour here because I cannot control who will read it and unless you know me, you could think that I was laughing at the very real problems that people face on here and throughout the world.

Well, you gave your history as to why my joke was insensitive.  I respect that and your feelings.  How about you see where I am coming from too?  Let's see, my father's brother was sent to a gulag and "died" at the age of 33.  And why was that?  Not because he wasn't Communist enough but rather he was TOO far left.  My father still talks about him everyday and keeps a little shrine.  My great-uncle Gennady lost his leg from the knee down due to unsanitary conditions in the camps.  Why was he there?  He handed out a few "Lenin would be unhappy with us" pamphlets.  He tells the actual horror stories of guys reverting to animal behavior to survive.  I'll probably ask him if my statement here was inappropriate when I visit him in Stavropol next weekend.  He makes jokes all the time too.  My father was in the Soviet military, where he saw a lot of gnarly things, and everyone in the household had to listen to his night terrors for years. [Probably why I suffered from insomnia as a child..]  My grandfather retired as high ranking member of the military, still believes very strong in Soviet rhetoric and many of his views are authoritarian.  So, quite frankly, I understand the seriousness of the authoritarian regimes.  You didn't need to assume that I think the whole situation is one giant giggle or perhaps I'm too young to know anything.  I'm not going to dwell on the darkness because I'd forever have to hate who I am, my "actual" roots and live in guilt.  So, I laugh at the odd things I can find humor.  If that is the sad state of a once glorious newspaper, I'll take it.  If people make absurd statements, it's a natural process to laugh. 

We already discussed how this turned into a giant misunderstanding when I was trying to briefly touch on why I found the original statement from Obsidianom insulting. It is because we share broad similarities in our background. We are both American, both old enough to have lived through a far more naive time when Russia was our worst enemy (with no one really challenging that notion), and both know perfectly well that Pravda was once a symbol of evil. And again, the current state of Pravda is not really relevant to me. He could have said we were becoming like Nazis or North Korea, it would have been the same message. It wasn't meant to speak to your background at all, and since I only have a vague idea of your age and don't like discussing mine on the internet, I wouldn't claim you are too young to know anything. My kids show the ability to understand issues much more profoundly than I could have predicted, so obviously a well-educated, well-traveled woman such as yourself will know much more than you could ever put down on an internet forum.

Thanks for sharing a bit about your family's history. It is incredibly sad and scary. I know I would have found it terrifying as a child. Then again, I found most things Russian/Soviet terrifying as a child, for the reasons I briefly touched upon above.

I think that's the thing with this website and the name: First, it comes with the variable of "hate".  But, we don't dwell on the darkness here as we help each other and offer support.  We take a very serious matter and see light at the end of the tunnel.

Ah yes, the topic! 
One day when trying to access the forum, because of the mysteries of my mobile, I wound up on a site called 'I hate nursing'. I read everything I could find on that site. It was hilarious - yes there were very serious issues being discussed, people who tried to devote their lives to helping in medicine and instead feel they are treated like garbage and now feel trapped in a job they despise, but the humour was wonderful. But of course, as many pointed out, it's not the nursing that they hate, it's all the crap that comes with it. (Well, some just hated every bit of it, and they are entitled to their feelings.) It was a great window into how American (most were American) hospitals and other medical clinics operate and treat their staff. I have had to rely on nurses for LOTS. It did not upset me to see what many really thought of the job, and I didn't find them ungrateful for having any kind of job in the American economy. They were just discussing feelings. It's great that they have a place to do that, as do we.

I am still glad you got a laugh out of Pravda! I do agree with you that one should find laughter wherever one can!

[UkrainianTracksuit]

Cariad,

I "moved" back to Russia early this year (early January).  I don't consider it permanent but it needed to be done.  After my doctors for years said it wasn't a good idea, I spent a couple weeks in E. Europe in the past autumn and gosh, I didn't die.  I needed to just "re-energize" by seeing relatives [and now, "educating" my aunt here about her HD.. can never run away from it!], old friends and old places.  I hope that's enough clarification.     

I thank you for your reply.  You didn't have to and you kept your word.  Anyhoo, I would make this point clear: I would never find humor in actual people's experiences.  By raising survivors' experiences, I was not saying 'laugh with them' or 'laugh at them', rather, it was their perspective that if they wanted to keep hope, they also had to find the light side.  Trust me, there were a lot of tears too.  It was a very important lesson.  Only in material things like a newspaper or a silly information ministry that were so hopped up by propaganda do I find humor.  Had it been North Korea or past fascist regimes mentioned, you're absolutely right, there would be no humor. [Unless we're talking about bad haircuts and ridiculous ideologies]  As for your assumption, I wasn't trying to put across how 'you' should feel.  Let it be known, I would never try to force feelings on people.  It was simply the general absurdity.  I just couldn't get over the reference, honestly.  All I could do was laugh when I'm reading along and pop!  There's Pravda!  I guess I should've replied, "In Soviet Union, dialysis hates you!"  When all fails, Russian reversal is the answer.     

As for the topic at hand, your point about the nursing forum is what most been saying here [as you know!]: It's not the dialysis we hate, it's all the crap that comes with it.  It's good you shared that on a thread mentioning "hate" in a name.  I've always believed that hate is a variable.  Yes, it's a strong term but it can be both positive or negative depending with what it's aligned.  If you hate something negative and with negative connotations, it's positive.  [Example: I hate racism, I hate despots, I hate homophobia, I hate bananas.]  We're all thankful dialysis keeps us alive but we hate the damage its caused, lives it has taken, the sometimes 'forks in the road'.  Previously you stated you aren't so keen on sharing your age and I understand that.  However, for me, to find members here around the same age was such a relief.  This terrible disease and its replacement therapies affect members in all age groups but I didn't "know how to live" at this point in life where big decisions have to be made.  It's so easy to say, "Keep a positive attitude!" but not when you have a career or responsibilities on the line.  When I noticed the forum's activity level and the variety of members, I realized this place could do nothing but help.  Currently, it's been great to provide information to local patients.  I ask permission and I translate simple things about the standards of cleanliness to diet information.  I've googled after joining this forum and there are forums relevant to my location but a) they aren't too active all the time b) some of the information shared is one big WTH  c) there's always some clown trying to sell an organ (It's not your typical 'i sell you kidney!' but more sophisticated) d) I become really sad hearing about patients unable to get a hold of medicines and dialysis supplies.  Another thing is that there isn't much help directed for 'caregivers' anywhere like on here.  It seems as though, as caregivers, all of our experiences mesh and those times when we have "ARGH!!!" moments, we are not alone and others understand.  My boyfriend is surely not my caregiver but I wish so much he understood a snippet of English so he could read posts here.  It would take out so much fear of the dialysis process, my ugly new graft and fearful thoughts of invalidity and death.  Transplants are not my experience nor is one in my path but I am extremely happy when people receive one.  It's super also that there are many recipients here too to share their experiences through the process, the follow ups and enjoying life.  All in all, from lurking on relevant groups for my area, it was a depressing experience and I didn't want that at all.  In the end, I feel that this forum has the most active and best educated patients or members offering help.  This site could've been named "Dialysis is the gateway to Hades" and I'd still join.  I know the saying is "it's all in a name" but in this case, it's not.  The name is part of it but the site has become SO much more. 

To sum it all up, can we in general find different authoritarian examples in the future?  Like errrr, "this place is becoming strict like a bald eagle at the top of a filing cabinet!" Sorry, bad idea, I guess IT IS easier to just pick blazing obvious examples from history.  Either way, it's just as odd.  Lastly, I wouldn't change a thing about this place.  I just want everyone to get along if they agree or not.   

Cariad, I apologize again for the long reply.  I hardly get to "express myself" when it comes to this sphere so I get taken away.  Good thing it's dinnertime to stop me!   

[Zach]

This site could've been named "Dialysis is the gateway to Hades" and I'd still join.

"Dialysis is the gateway to Hades."

That's got my vote!
 

[Hemodoc]

This site could've been named "Dialysis is the gateway to Hades" and I'd still join.

"Dialysis is the gateway to Hades."

That's got my vote!
 

Zach, Zach, Zach

[noahvale]

*

[Hemodoc]

This isn't even semi-scientific because the wrong people are being polled.  Survey question should be "why have you not signed up to become a part of IHateDialysis.com" with reply options and sent to the 10s of thousands who aren't members to have any meaning.

Great, do you have a grant I can use to do that scientific poll per chance?  Also, do you have another grant to find the people who did NOT sign up for for IHD so that I can survey with the first grant those that are the right people to poll with the second grant so I can find them? Sorry, that is just silly Noahvale.  If you wish to do that "scientific" study, that is certainly your prerogative, but I think I will pass on your suggestion myself.

The poll is actually quite interesting aside from the whole name change issue. It will live on and perhaps even after I am dead and gone, I suspect IHD will still be here and my poll will live on. Yes, that will be my legacy as well as long as they don't change the IHD name and kick out the dead members that is.

Cheers

[cariad]

"In Soviet Union, dialysis hates you!" 

Oh my God! This is utterly brilliant and hilarious!!! I heard the Russian accent when reading that! If we cannot agree that this site name *must* be  changed to "Dialysis is the gateway to Hades" surely we all can see the wisdom in starting DialysisHatesYou.com 

As for the topic at hand, your point about the nursing forum is what most been saying here [as you know!]: It's not the dialysis we hate, it's all the crap that comes with it.  It's good you shared that on a thread mentioning "hate" in a name.  I've always believed that hate is a variable.  Yes, it's a strong term but it can be both positive or negative depending with what it's aligned.  If you hate something negative and with negative connotations, it's positive.  [Example: I hate racism, I hate despots, I hate homophobia, I hate bananas.]  We're all thankful dialysis keeps us alive but we hate the damage its caused, lives it has taken, the sometimes 'forks in the road'.

This is an elegantly simple point you've made, and one that I never would have thought of - yes, there are indeed times when hate is the most positive reaction one can have. Thanks for this, it brings a fascinating new angle to the discussion.

Previously you stated you aren't so keen on sharing your age and I understand that.  However, for me, to find members here around the same age was such a relief.  This terrible disease and its replacement therapies affect members in all age groups but I didn't "know how to live" at this point in life where big decisions have to be made.  It's so easy to say, "Keep a positive attitude!" but not when you have a career or responsibilities on the line.  When I noticed the forum's activity level and the variety of members, I realized this place could do nothing but help.  Currently, it's been great to provide information to local patients.  I ask permission and I translate simple things about the standards of cleanliness to diet information.  I've googled after joining this forum and there are forums relevant to my location but a) they aren't too active all the time b) some of the information shared is one big WTH  c) there's always some clown trying to sell an organ (It's not your typical 'i sell you kidney!' but more sophisticated) d) I become really sad hearing about patients unable to get a hold of medicines and dialysis supplies.  Another thing is that there isn't much help directed for 'caregivers' anywhere like on here.  It seems as though, as caregivers, all of our experiences mesh and those times when we have "ARGH!!!" moments, we are not alone and others understand.  My boyfriend is surely not my caregiver but I wish so much he understood a snippet of English so he could read posts here.  It would take out so much fear of the dialysis process, my ugly new graft and fearful thoughts of invalidity and death. 

Again, I have no experience with this interesting culture you inhabit, and it is amazing to get to read this sort of insight on it. You seem to negotiate the two cultures effortlessly, which I think is an extraordinary and extraordinarily rare trait. I had no idea your boyfriend doesn't speak English. That would seem to put quite a few difficulties in your path, not understanding anything written on IHD being one of them. Perhaps Google Translate will improve one day, but the translations into English from other languages frequently make almost no sense. It's great for the odd word here or there, though. My husband speaks Welsh (yes, it's as useful as it sounds!) but there are no monolingual Welsh speakers left in the world, so thankfully he is entirely fluent in English as well.

 
Transplants are not my experience nor is one in my path but I am extremely happy when people receive one.  It's super also that there are many recipients here too to share their experiences through the process, the follow ups and enjoying life.  All in all, from lurking on relevant groups for my area, it was a depressing experience and I didn't want that at all.  In the end, I feel that this forum has the most active and best educated patients or members offering help.  This site could've been named "Dialysis is the gateway to Hades" and I'd still join.  I know the saying is "it's all in a name" but in this case, it's not.  The name is part of it but the site has become SO much more. 

Cool, so we can look forward to years of your posts! I do believe that something better than transplant is on the horizon, so I wouldn't be surprised if you will eventually be off dialysis.

To sum it all up, can we in general find different authoritarian examples in the future?  Like errrr, "this place is becoming strict like a bald eagle at the top of a filing cabinet!" Sorry, bad idea, I guess IT IS easier to just pick blazing obvious examples from history.  Either way, it's just as odd.  Lastly, I wouldn't change a thing about this place.  I just want everyone to get along if they agree or not.   

The getting along bit is a noble goal, but tempers do flare and I don't think we'll ever completely eliminate the spats. I just want to find ways to work "this place is becoming strict like a bald eagle at the top of a filing cabinet" into my everyday conversation. 

Cariad, I apologize again for the long reply.  I hardly get to "express myself" when it comes to this sphere so I get taken away.  Good thing it's dinnertime to stop me!   

I enjoyed every word. You have a delightful sense of humour!. Keep the posts coming, please!!!

[tigtink]

Why change something that is obviously working well?  I spent time at several kidney disease forums, reading carefully and sizing them up before I decided to register.  For the most part they were all pretty disappointing.  I come here because it is active, there are a variety of points of view, and most posters are very respectful of each other.  When I have a problem, I always try to find others who have been through a similar situation and have found constructive ways to deal with it.  I find that here.  The name is an eye-catcher, to be sure, but anyone who is sincerely looking for good information and support will take the time to find out the real character of the board and its posters.  The strength here is in the people who contribute, not in the name.

[talker]

I am throwing this out to see what people here think. I am not in any way trying to be presumptous or trying to take over here. I realize compared to some of you I am a realative newcomer as I have only been here about 9 months.  I just came to a realization and wanted to get some input.
Someone mentioned in a post that we have a bad reputation here amongst the "professionals" out there in nephrology and dialysis land. They wont recommend the site to their patients, thus we lose a lot of potential people we could be reaching and adding. Thats a shame.
I wonder if part of the problem is the NAME,  "IHATEDIALYSIS". 
I admit it turned me off originally and I stayed away for a long time before joining when I saw the name. It does conjur up the image of just whiny people feeling sorry for themselves.  In fact that is NOT what I see here at all.  Yet the name does kind of infer it.
Look folks, no one in their right mind wants to be having to do dialysis. Thats a given. Its a hard life.  But why rub it in with the name we use.
Maybe we should look at what it is we are doing and discuss what we want the site to be?   Then perhaps we could discuss the name.  Again I am not trying to start a fight or upset the old timers here or the "owners" who do a great job keeping this running. I just would like to open a dialogue on this with the goal of getting more people to this site who may be staying away due to the name . Also I would love to see the professionals refer more of their patients here . We do a great service and can do more with more people.

So its up to all you  now.  Lets "talk" about it.   If the concensus is to keep the name , then so be it.   If we do decide and the owners agree with a name change, then perhaps we can move on to new names.    Thanks for listening.

Some, like Mr Ford was , any color you want, as long as its black.   

Agree though that once in a while its OK to take a look at all the options available. 

I vote for keeping the name as is. 

talker

[Zach]

For those who don't understand why Epoman named this site, I Hate Dialysis, please read his post and the attached arcticle:
http://ihatedialysis.com/forum/index.php?topic=922.msg9301#msg9301

An excerpt from the interview with Bill Halcomb (Epoman):

“The corporate boards are very moderated,” he said. “They delete posts, edit posts, and it made me feel silenced. I got fed up with it, and said ‘…I’ll just start my own board.’

“The next step was to decide on a name for the site. Lots of sites start, but never get off the ground, so I wanted something that would shock people, but also interest them, and that’s where the name comes from.

“Hate is a strong word, but it’s true. I am grateful for dialysis and will kiss the ground the creator of dialysis walks on, but I hate living with it, and I hate what it does to my body and how it makes me feel.”


Very interesting reading.

 

[cassandra]

Very interesting reading indeed Zach! Thanx

Love, Cas

[MooseMom]

Thank you, Zach, for finding that article and sharing it with the rest of us.  It has made me really sad that some of the people interviewed are no longer here.  While I knew why Epoman named IHD as he did, I guess it really never hit home until I read it in his own words.

Perhaps this thread should be stickied as there will inevitably be another discussion of this issue sometime in the future.

However anyone here feels about dialysis, I hope we all can find a way to have some peace and joy in each day.  If you are having a bad day, all you need to do is post, and someone will be quick to lend an ear and a shoulder to cry on. 

 

[okarol]

For those who don't understand why Epoman named this site, I Hate Dialysis, please read his post and the attached arcticle:
http://ihatedialysis.com/forum/index.php?topic=922.msg9301#msg9301

An excerpt from the interview with Bill Halcomb (Epoman):

“The corporate boards are very moderated,” he said. “They delete posts, edit posts, and it made me feel silenced. I got fed up with it, and said ‘…I’ll just start my own board.’

“The next step was to decide on a name for the site. Lots of sites start, but never get off the ground, so I wanted something that would shock people, but also interest them, and that’s where the name comes from.

“Hate is a strong word, but it’s true. I am grateful for dialysis and will kiss the ground the creator of dialysis walks on, but I hate living with it, and I hate what it does to my body and how it makes me feel.”


Very interesting reading.

 

You rock Zach! 

[amanda100wilson]

 That really does explain the name well.  I believe that is how most of us feel.

[RichardMEL]

I'll just add my 2 cents worth... I liked glm's post, I LOVE the Russian/Soviet style humour... it is very funny I must admit.

for me, I think the name is very apt. The thing that steered me here was not that I googled "I hate Dialysis" but just something general to do with D (I can't remember what) but what drew me to have a look was exactly the name!!!! I mean I thought "Anyone who has a site named this has probably been there" and it made me think, when I brought up the main page, "this is a REAL site" - as Epo said at the time - the corporate sites are very.. corporate.. I am the sort who much prefers the real view.. expereicnes(good and bad) and stuff. Like people telling us how cold they get on hemo and stuff. that stuff is common and REAL WORLD. I had to join and add my little bit of experience and thoughts.

To me the name doesn't put me off(as a patient) or feel like it is only a negative site. I've never thought of the people here being especially negative about *life* - everyone can be negative about having to be on D (who would want that?) but I think most people here are generally the sort to be positive, want to help others and share their experiences and support, and overall be a positive force in this world than people just ranting about how unfair life is and how crappy it is to have kidney disease and so on.