Why was my post deleted?

Hello,

I am the admin of another dialysis message board and I had posted a link to my site. Before doing so I checked the rules of posting here and I saw nothing that disallowed me posting my link to my site.

My site is totally different than yours, your site is a specialty site concerning Home Dialysis and mine is a Rant/Vent site. Why are the mods/admins not allowing my post? I have links to your site on MY site. We are all affected by this terrible disease. We are all in this together.

Please do not delete this post as well and give me a professional explanation? This is another post that is within your guidelines and is breaking no rules.

Epoman

Hi, perhaps spam? :oops:

I couldn’t find any link on your frontpage to this site…am not the admin but hey…

Tell us a little about yourself…are you a home dialysis patient?

Hi, perhaps spam? :oops:

I couldn’t find any link on your frontpage to this site…am not the admin but hey…

Tell us a little about yourself…are you a home dialysis patient?[/quote]

Hi Gus,

Well I don’t think I would call me posting my link spam, since Home Dialysis.org links to other peoples sites including patients personal sites.
The link to this site is located in the posts from one of my members. (In a post she created when she replied to a question about Home Dialysis).

Anyway my name is Bill and I have been on dialysis for over 12+ years NO transplant. I am on Hemo and I think I would really be interested in Home dialysis with the NxStage machine.

Epoman

Hi Gus,

Well I don’t think I would call me posting my link spam, since Home Dialysis.org links to other peoples sites including patients personal sites.

I have a personal site…see link below, but its only about home dialysis…which makes more sense to link…

The link to this site is located in the posts from one of my members. (In a post she created when she replied to a question about Home Dialysis).

I think its more appropiate to place the link in the frontpage like I do on my site…there’s a rotating banner that includes one for this site and there’s a link in the links section. I would suggest you to do the same…its only way to be even…also would be cool is to make a new post on your blog about this site…

Anyway my name is Bill and I have been on dialysis for over 12+ years NO transplant. I am on Hemo and I think I would really be interested in Home dialysis with the NxStage machine.

Well Bill, pleased to meet you…I really think you’d do great at home doing dialysis. Nothing compares to beeing at home. Its simply the best…you should really look into it and see if you can get trained to do it…its worth it…

[/quote]

[quote=“Gus”]

Hi Gus,

Well I don’t think I would call me posting my link spam, since Home Dialysis.org links to other peoples sites including patients personal sites.

I have a personal site…see link below, but its only about home dialysis…which makes more sense to link…

The link to this site is located in the posts from one of my members. (In a post she created when she replied to a question about Home Dialysis).

I think its more appropiate to place the link in the frontpage like I do on my site…there’s a rotating banner that includes one for this site and there’s a link in the links section. I would suggest you to do the same…its only way to be even…also would be cool is to make a new post on your blog about this site…

Anyway my name is Bill and I have been on dialysis for over 12+ years NO transplant. I am on Hemo and I think I would really be interested in Home dialysis with the NxStage machine.

Well Bill, pleased to meet you…I really think you’d do great at home doing dialysis. Nothing compares to beeing at home. Its simply the best…you should really look into it and see if you can get trained to do it…its worth it…

[/quote][/quote]

Gus in reply to your comments why would I post a banner link or post a link directing to homedialysis.org from my homepage if I am just posting a link in this forum. I could see it if my banner was homedialysis.org’s site but it’s not.

But I just don’t see what the big deal is, with me posting my dialysis site which has home dialysis patients as well. I posted a link which is all about dialysis, not something off-topic.

My site is different in the sense it was made so patients have a place to rant and vent their frustrations about being on dialysis.

  • Epo

Well Bill, once again am not the admin of this site, but we’ll what they have to say…

My site is totally different than yours, your site is a specialty site concerning Home Dialysis and mine is a Rant/Vent site. Why are the mods/admins not allowing my post?

Sorry, Epoman, but we administrators also reserve the right to delete any post for any reason, including not approving of an embedded link. I’ve looked at your site, and it’s essentially a rant-fest about how terrible dialysis is.

You are wholly entitled to feel the way you do about dialysis, and I would never dispute your right to start your site and to do what you can to advertise it–but we will not directly link to it, nor will I permit an entire thread just to call attention to it.

I should add that if you want to join the site as a member and include your URL in your profile, we won’t delete that, since it is dialysis-related. But I will delete a thread started for this purpose.

We’ve found in research with hundreds of people on dialysis that a positive attitude is one of the 3 factors (along with learning all you can and taking an active role in care) that helps people live a long time with ESRD–and that’s what we’re all about. So, I can’t, in good conscience, support a site that encourages people to have a bad attitude that I believe will make them die sooner.

I used to have an army buddy who was a real estate agent. When in civilian dress, he always wore a lapel pin which said “Attitude is everything”. I can only 100% agree with Dori about this.
Pierre
P.S. Not that my agreement is of any particular use… but attitude truly is a big part of success on dialysis, not only real estate :slight_smile:

The title of that site says it all, its extreme… perhaps bad choice of words for the title? :roll:

Well you say you looked around my site but you must not have read ANY of it.

Welcome to ihatedialysis.com a meeting place for people on Hemo or Peritoneal dialysis to rant and vent their frustrations about being on dialysis. No holds barred, the straight truth from fellow people who hate living on dialysis. We are not being negative, we just hate dialysis.

We are there to inform people of the truth about dialysis, to inform uninformed patients. I believe a informed patient is a healthy patient. I hate dialysis, so since you are so against hating dialysis you must love it?
If you read any of the posts you would see that when a person comes on our site we inform then and answer any question they may have BUT we don’t sugar coat it. We tell them the facts.

What is wrong with hating dialysis? yes it keeps us alive but just as a cancer patient Hates Chemo they still do it to survive, as do we. Our site is a place to rant about situations that arise that many of us has faced for example doctors who rush through seeing us, dialysis centers with many different problems, or just being frustrated with fistulas, grafts clotting, having doctors give wrong info or medications that do not work and not trying a different med.

I am so offended that you say you read my site and you call it a rant-fest when 90% of our site is just new patients asking questions and they get FACTUAL answers. Yes the site has rants but what is wrong with someone letting off some steam when a center or doctors is not treating that patient like a human being.

You also mentioned that we encourage people to have a bad attitude. Where do you get that from? We offer comfort and a place to rant then we tell them how they can FIX the situation and make there dialysis journey an easier one.

I feel that you “Judged a book by its cover” and that is unfair. We are all in this together and we all suffer from this terrible disease. I guess you would be ok with my site if I called it “ilovedialysis.com” but I do not love dialysis I hate it, but I do it because it keeps me alive.

So please do me favor and read some threads in the General Disscussion section and you will see how helpful our members.

-Epo

I did visit your forum…cool place, nothing wrong there, but I think your site’s title is giving the wrong impression…it gives the wrong idea…confusion…

get it? :roll:

Be concise and use a more appropiate title…I think that would work well…

Keep in mind that the title also offends… :oops:

I am so offended that you say you read my site and you call it a rant-fest when 90% of our site is just new patients asking questions and they get FACTUAL answers.

Actually, I did read quite a lot of your site when I visited it, and I was not impressed with the accuracy of the answers. Also, you yourself, in describing your own site said:

My site is totally different than yours, your site is a specialty site concerning Home Dialysis and mine is a Rant/Vent site.

So, I’m not sure where the offense comes in.

You keep your site, do what you like with it, and we’ll keep ours. No harm, no foul.

But Gus it’s not giving the wrong impression it’s being factual. Do you love or even like dialysis? If you do well then end of discussion but I can’t imagine you have never said to yourself or said out loud “I HATE DIALYSIS” come on be honest. With the sites name I am being extremely concise and appropiate. I have have so many people thank me for this site and some have said it has saved their life. You see the problem is that I started a site that is different from all the other sites. Where most sites want to inform patients by textbook answers we inform patients by patients actual experiances.

But please elaborate how this site offends?

P.S. I would like to thank the admins/mods for not deleted or locking this thread and allowing this discussion. In no way am I “flaming” or trying to start a “flame war” I just want to disscuss this with others to get their opinion. Is my site bad for patients? I don’t think so but some of you do, and I value all opinions.

Can you help me out for my members benefit and give me an example of an inaccurate reply? I mean I am no doctor and I am just giving my life experience. But I am by no means giving wrong information but if you think I am please point out a couple of examples?

  • Epoman

[quote=“Epoman”]

Can you help me out for my members benefit and give me an example of an inaccurate reply? I mean I am no doctor and I am just giving my life experience. But I am by no means giving wrong information but if you think I am please point out a couple of examples?

  • Epoman[/quote]

I’ll rant with you and debate, but I will visit your boards for that…haha…

:roll:

I’ll rant with you and debate, but I will visit your boards for that…haha…

:roll:

Your more than welcome to come to our site, but the problem that started was on this site so why confuse members on my site? They do not know about this thread.

I’m glad you posted your link on my site but I can tell it was just being sarcastic since you added the “rolling eyes” at the end of the link. Too bad you didn’t post your link to inform people but to rather “get back at me” :roll:

I’ve participated in many internet forums and email groups over the past decade. In every single one of them, the great advantage was real patients sharing their real experience with other patients. I don’t know of any which only serve to inform patients with textbook answers, except maybe some of the informational sites operated by dialysis companies. Your site is not the first to do this, and even though I’m not associated with this site except as a poster, I totally reject your assertion. There are no “textbook answers” here. A tremendous amount of collective work goes into answering questions, and I find your assertion that this is what we do to be extremely offensive. You obviously haven’t take the time to know the community here.

We are all hands-on people who have the will and the courage to improve our situation by taking more direct control over it, and we motivate ourselves to do it almost every day. There’s little room for error in that and no room for negativity.

Pierre

I was not refering to this forum I was referring to the main site. which is textbook information. By no means am I referring to this message board. Which is wonderful and there are many wonderful posts by patients for patients. Also this seems to a board has many smart and loyal members.
Which is proven by your repling here and defending it. So Thumbs up to you.

When I say my site is the first I am referring to a site that breaks the norm. Every site out there has a normal, calm sounding name to it. My site is the first to say in a nutshell “Hey dialysis sucks and I hate it” The day my site does not help my members is the day it gets shuts down. The name ihatedialysis is just that a name it means nothing and when members come to the site and they see what really goes on they love it. Obviously there is a market share for a site such as mine since we only launched just over 6 months ago and we are averaging 12+ new members a month consistantly and that means we will be at 200+ members by the end of this year.

Here is the reason I started my site, I have been on the internet since the early 90’s (91,92 era) and I have seen dialysis sites heavily edit and moderate a members post if that member wants to rant about something that was bugging them related to dialysis. So I created a site to allow members to rant and vent and discuss certain issues. It started mostly as a site for myself to rant but has grown so others may do so as well. My site does not tolerate extreme vulgar language or bashing of other members however. But we will not edit a post from a member for wanting to get something off their chest. In fact it is part of a healing process, people need to get things off their chest or they will harbor it inside them and it will cause anger issues.

I hope this clarifys the situation and again I meant no hard in using the word textbook and I was not referring to the wonderful replies people have posted here.

  • Epoman

Start with your post on February 17, 2006, 10:27:54 AM
Re: Home Haemo (…and Nocturnal) “the way of the future!”

As advertised, it is a rant. Do you stand by this post? I would say that it is at odds with your post here.

Do I love dialysis? That’s the wrong question. I love life. And yes I love my life. I love my life dialysis and all. The problem with hating dialysis is that it is unsustainable. We have kidney failure, that is a part of our lives. It is a fact of our lives. Just like our gender, our location on the planet, our health, whatever it’s just a detail in our life. Every moment spent hating some element of your very own unique, irreplaceable life is a moment waisted.

Do I hate sleeping? I mean think of all the web sites I could visit if I never slept. But there is a consequence to being sleep deprived. Sure I can function after a red eye and no sleep but don’t confuse functioning with being well rested.