DialysisEthics2_Forum
Other => Historical Posts => Topic started by: admin on September 18, 2009, 09:25:59 PM
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LuLuW
Joined: 27 Apr 2003
Posts: 46
PostPosted: Sun May 18, 2003 1:49 am Post subject: Before I go ........ Reply with quote
Being born in the 60's, coming of age in the 70's, reaching maturity in the 80's and raising a young adult in the 90's-2000's, let me say that I'm just not feelin' this place. I thought it was gonna be da bomb diggity, but have found out it is whack! I now see why not many people from the Dialysis Online board come here. There is too much pettiness, jealousy and bitterness here, and quite frankly, taking care of my health and spending time with my loved ones and the people who really matter to me is more important than spending time here wading off ridiculous, anonymous attacks by people I could care less about. I just received a wonderful gift from God, a second chance in life, and believe me, I'm not going to blow it. I am going to take care of this kidney, keep my stress levels low and my focus and priorities straight.<
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>That said, Arlene, you have my email address. Your heart and soul are definitely in the right place. I dig you! If you need anything, or know of any way I can specifically help, please don't hesitate to call on me. In the meantime, I don't think it's a good idea to post here any longer. <
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>P.S. I happened to watch the Democratic candidates for president debates over the weekend while in the hospital. There are several candidates who appear to really want to shake up this election and taking up DEO's cause would definitely fill the bill. Maybe you could use them as our sounding board. Who knows? Might be worth a try! Take care.
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aprnjam
Joined: 28 Apr 2003
Posts: 85
PostPosted: Sun May 18, 2003 8:36 am Post subject: Re: Before I go ........ Reply with quote
LuLuW, I'm very happy that you received a transplant and I hope that everything goes well for you post-operatively. For someone to make the statement that there is too much pettiness, jealousy and bitterness here, you posted numerous messages to this board. Obviously you did so for some reason, then to "trash" the DEO after you receive your transplant is inappropriate. What you have on this message board are a group of people who are frustrated with the care they receive and terrified to make any complaints because of the specific in-center unit that they receive their dialysis. Because of their fear, they vent their frustrations and fears in this forum. I, for one, do not like to complain to my family all the time, because I feel that it's an extra burden on them. I'm sure that there are many others who feel the same way. So you elect to voice your fear and frustrations to others who are experiencing the same feelings in an anonymous forum.<
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>Because of the fears that the centers have placed into the hearts of patients you are terrified to make even the smallest complaint to either the facility or your family member (in fear that they may become involved and try to advocate for you and you will be "dumped."). Trashing a forum that allows people to voice their frustrations and fears is inappropriate and only serves to make everyone who participates in this forum feel even worse than they do about their situation.<
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>While you have the right to voice your opinion in this country, sometimes, its better that you stop and think about what you are saying and how that will affect other people. While you think your comments may affect positive change, you may only serve to make those individuals feel even worse about their situation and instill even more fear. Sometimes silence is golden, and a graceful exit is much better.<
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>Members of this site need encouragement and support to stand up for their rights and advice on how they can achieve the goal of fairness in all dialysis centers, not to be told that they are petty, jealous and bitter. The treatment that they have received has lead to these feelings and they need to know that there out people out there that care and want to help change how things are in dialysis centers.<
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>I wish you well, and I hope that you never have to face rejection of your new kidney and that you never have to end up on dialysis again. But think about what you say to people, you are one of the lucky ones who have gotten a second chance, and there are still a lot of us who haven't gotten that chance and we still need the support of others, not being told that we are jealous, bitter and petty.<
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Thank you
Joined: 18 May 2003
Posts: 3
PostPosted: Sun May 18, 2003 10:27 am Post subject: for a voice of reason Reply with quote
aprnjam, and I would like to add my thoughts. I too wish you all the best with your new transplant LuLu. DEO is made up of people from all walks of life who have one thing in common- kidney disease.<
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>People from such different backgrounds are bound to clash although some overdo it with digs over minor things or due to their very wrong points of view which are opposite what this board stands for, still in denial of what the true issues are. Then, there are those who come here who are Industry that purposely come here to present distractions and to confuse the issues. <
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>A mature person knows the difference and stands firm in his position, not backing down from the deliberate troublemakers and those who are contentious for reasons of misundertanding, and dilligently
ings the message forward. Remember the childhood saying, "Sticks and stones will
eak my bones but names will never hurt me"? Well the problem is not all are mature and have learned that lesson. Many have said if things are not done their way they will take their ball and go home! <
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>If you can't contend with the jabs of those at this baord who feel they must spar with you, I understand your need to protect yourself and go to safer ground. But I want to say that you have what it takes to be a big support to this organization and I wish you would reconsider and get beyond the pettiness of a few. <
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>Like aprnjam said, you are so fourtunate to have gotten a transplant and the restored health that goes along with it, that you have the choice to be a bigger person who will stay and fight for those who need your help. We have all come across as petty to others at one time or another, but if you look at the intent of a person's words, you can see when its just a difference in opinion, a bad hair day or an out and out slam. <
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>I want you to know that you inspired me eventhough I didn't agree with all of your views. The patients at the other boards are not taking any respnsibility to make changes in the dialysis units. They are about helping each other with dialysis information, but that does not do a thing to improve units. That is just a form of coping that doesn't expend any effort beyond the staus quo. The world wouldn't last long if we all took that attitude. <
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>I'm very proud to be a daily contributing member of DEO. This is the orgnization that's going to change the face of dialysis. Please take some time to heal from your xplant and rethink your position so you, too, can say you made a difference.
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LuLuW
Joined: 27 Apr 2003
Posts: 46
PostPosted: Sun May 18, 2003 10:32 am Post subject: hmmm, maybe it wasn't you who emailed me Reply with quote
The people, persons, whomever personally attacked me for my views are petty and bitter. To personally attack anyone because of their own opinion or how they feel is petty and bitter. I stand by those statement and have no problems reiterating it. Yes, I posted here because I wanted to help. And I would have remained posting here til the cows came home if I could really see that posting here would do any good. But I am not going to ward off anonymous attacks day in and day out. And let me give you a news flash, I'd be willing to bet that a good many people who do post here will bail when it comes down to really doing something for the cause. I am ready to do something for the cause, and attach my name to it. I am scared of no one and nothing. Yes, watch for me, because you will be seeing me out and about, and soon. I've made many contacts locally and nationally and the word will be getting out. I am one who is willing to put my name and my where my mouth is. So, just watch me. And I don't believe posting anonymously on a message board even comes close to that.<
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>And lastly my post on American shame did not step on any toes whatsoever. It wasn't personal, it was my feelings, yes my feelings on how I think America needs to step up and be the greatest country in the world by taking better care of its own citizens. I got personally attacked for voicing these feelings, was even told repeatedly to leave the country. Or perhaps I should have taken the easy way and made up some unaccountable
anonymous tag to post it under? That seems to be the status quo here. I didn't know that was necessary. No, I don't think I belong here.<
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>And with that, I truly do close. Email me if you wish.
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Arlene
Site Admin
Joined: 02 Feb 2003
Posts: 49
PostPosted: Mon May 19, 2003 5:06 am Post subject: It is sad Reply with quote
You have not been on the board long enough to know what this organization does. The board is only a small part of what goes on.The Senate Hearings were us, no one else spoke out, not the NKF nor has the ESRD NETWORK protected the patients<
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>Many patients have been helped and are still alive due to the efforts of this organization. This has been the only haven for many patients who have been dumped to die or have been denied their patient rights.We have initiated many lawsuits, with lawyers who do it pro bono for the fact that many patients cannot pay for justice.<
>We have made noise and have saved lives.<
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>I am pretty proud of this group. The board is not what we do.Before we came along, it was business as usual and patients were paying the price. Daily we fight and advocate. Successfully I might add.<
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>One cannot take a stand without taking a few blows. Many times I wonder why I do it. It is about a thankless job ,that one can take, as you are even paying for this abuse. My standard of living is greatly reduced,my money and savings have gone into this.I have not worked for 5 years coming up June 11. But this was wrong then and personally I will continue daily until this industry is well on the way to honoring ones rights.<
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>Personally it has not been easy and besides fighting for patients,the industry forever slams this sight. But with the dusting off of friends that have come to help with the load, we are forever dusting one another off and going forward.The people that have showed up on our path and our network is enormous. The reason why is because no one is getting paid and we are all sacrificing in our own ways. But we are like "yew" trees, the wind comes and knocks us to the ground, but we stand upright when the wind ceases.<
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>For one this has been the greatest gift one can give to their fellow man. A gift that is for the right reasons and one that makes ones life worth living. Making a difference and living life with a passion. That is what this organization is about. We have
ought out the awareness that something is wrong and have walked the walk. This is the best group in the world, and have been proud to meet many upstanding individuals. The posting at times is not perfect, but we have been at this for 3 years, and sometimes forget that not everyone has started from the beginning. It is frustrating for myself, and believe me I can get down and wrestle in the mud with them. But we have made headway and made as many enemies as friends,that goes with the terrain. But awareness in this field was long overdo, and it is happening now. The expose will be out shortly and will
ing more people to this board.More stories.<
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>With all our faults, we are making a difference and this nightmare will be over. As I stated before, once this industry is forced to honor the patients and the self policing is over, I will be here for the duration, then an Ice Cream shop on California's HWY 299 is where you will find me. Just asking what flavor you want.<
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>We are coming to the "tipping point" and have many that are helping us. But we need to remember, that we were bashed so often, we are on an automatic response. Some new people dont know the history or how this industry works. Myself included, we need to realize that some of the posts are trying to figure it out. But the final product is what we are all after.<
>Arlene
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