I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: sandyHD on May 10, 2012, 09:23:38 PM
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I just want to bid goodbye to this very depressing forum.
Like with anything that stresses me or depresses me, I delete it out of my life or run away from it.
When I joined, I was curious as to what kind of environment this will be, like it would be nice to meet other people with the same circumstance as I have. And maybe share in celebrating the extension of life we are given.
I was hoping to learn a few more inputs but it will just frustrate me knowing I will never have that kind of treatment I should be getting. Maybe I am in the wrong discussion topics. i am too lazy to read anyway.
I met a few positive thinkers like I am, and I am glad about that. Makes me think that how I deal with my situation is just normal.
Good luck and God bless to everyone who chooses to be a member of this forum.
Silly of me to expect some sunshine at a forum with HATE in its title. :waving;
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I don't find this forum at all depressing. I find it most supportive and informative. It's encouraging to hear of other people in the same boat and with similar problems. I know I'm not the only person dealing with the ups and downs of dialysis.
I would rather deal with the stresses than run away from them
I wish you luck with your happiness and your dialysis
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Well, you made it for a total of 2 weeks since you joined. Looking over your posts I cannot see where you felt let down.
I hate the dentist too. Does that make me negative?
Best wishes to you wherever life takes you.
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Watch the door on your way out!
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I just want to bid goodbye to this very depressing forum.
Like with anything that stresses me or depresses me, I delete it out of my life or run away from it.
You can't run away from dialysis, but I can understand deleting things that depress you. I'm sorry to see you go.
When I joined, I was curious as to what kind of environment this will be, like it would be nice to meet other people with the same circumstance as I have. And maybe share in celebrating the extension of life we are given.
I hope you have learned a very valuable lesson, which is that just because you may share the same circumstances with other people, you won't necessarily share the same reactions to those circumstances. That's life. Your reactions and coping mechanisms are no more nor no less valuable and effective than anyone else's. Everyone is coping the best they can.
I was hoping to learn a few more inputs but it will just frustrate me knowing I will never have that kind of treatment I should be getting. Maybe I am in the wrong discussion topics. i am too lazy to read anyway.
If you are interested in pursuing a transplant and think it might be financially feasible, there are many people here on this forum who would be happy to share their experience with you and to answer any questions you might have. I hope it is not true that you are too lazy to read what several people have put a lot of effort into telling you. Being too lazy to read their responses leads me to believe that you don't really care about what other people have to say. I'd like to think that you would let yourself be open to discussion.
I met a few positive thinkers like I am, and I am glad about that. Makes me think that how I deal with my situation is just normal.
No one has ever said or implied that you are not normal in how you deal with your situation. You, on the other hand, seem to imply that the rest of us are "ungrateful", bitter, hateful and resentful and that we cannot possibly be right to feel that way.
Good luck and God bless to everyone who chooses to be a member of this forum.
Thank you, and the same to you. If you choose to come back at any time, you'd be most welcome. I hope that you are able to eventually get a transplant and live a long and happy life.
Silly of me to expect some sunshine at a forum with HATE in its title. :waving;
There IS a lot of sunshine here. Jbeany survived a bad transplant experience and now has bought a house that she has the energy to renovate practically all by herself. Paris was told that she'd never find a match for a transplant, but miraculously, they DID find a match for her, and she was able to avoid dialysis altogether. Lovebelle is on dialysis and, again miraculously, she is 27 weeks pregnant; she is dialyzing almost daily at home, and her baby is developing normally. Aguynamedkim has been able to practically halt his CKD progression by completely revamping his diet. Monrein has had her second transplant, and her husband is treating her to a month's holiday in France. Cariad is technically cured of CKD because she participated in a clinical trial where, essentially, her own immune system was destroyed and then replaced with that of her husband, so he was able to donate a kidney to her, and now a year later, she doesn't have to ever take any more immunosuppressants because her body does not see his kidney as a foreign object. Desert Dancer and Cattlekid and amanda100wilson do home hemo (with DD doing nocturnal), and they are proof positive that more dialysis is better dialysis. Bill Peckham, Meinuk and Hemodoc all are active on the patient advocacy front. And everyone else in this community share their good times and their bad times, getting together to meet each other in person at various places and times of the year. Instead of trying to change us, if you could find it in your heart to just accept us as we are, maybe you could be happier in our company.
But then again, maybe you are too lazy to read this. I do get a bit wordy, I know. :P
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I'm sure you are already gone but if you aren't....
You came here to an established group and started posting telling us how we should run our lives without even appearing to spend a minute of time getting to know us as members. I hope you now have a better understanding of the dynamics of Internet forums in general. I've seen it happen more than once in forums devoted to many different topics, not just dialysis. People don't take kindly to those who discount their feelings - in real life or on the Internet. You've now experienced this first hand.
If you care to stay and look around with an open mind, you will find a wealth of invaluable information here. Without this forum, I'd still be on in-center hemo, resenting every second I spent there as an intrusion on my life. However, I found home hemo from this forum and it has literally given me my life back as I await a transplant.
You never took the time to tell us what was going on with your treatments, other than the fact that you only have 2 treatments a week. I completely understand the differences between how dialysis is provided in the US vs. other countries. It's definitely unfortunate but not something that will really change any time soon. But we could have provided you information and our collective wisdom on how to make the best of your situation. It's your loss that you didn't let us.
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Your loss, not ours. Bye!!!
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Sorry to see you're leaving so soon. I would hope that you don't run so quickly from everyone who doesn't think exactly as you do. You come onto a forum named I HATE DIALYSIS and expect everyone to jump to your way at looking at life through rose colored glasses. Then you take off when they don't all say "hey this woman has the right idea, I'll just be happy and all will be well". Many of us on here have been dealing with some things others have nightmares of. I try my best to be as positive as possible but realism has to be taken into consideration to. No matter how much you may want it to be all isn't good. Positive thinking will only take you so far. May God watch over you as you travel through life. God Bless, Bill
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Sorry to see you go, but cattlekid really said it all. This forum goes through cycles, just like everything else. Two weeks is not nearly enough time to get a feel for the people here. I also think you're going to miss some really valuable information; I've discovered facts both minor and major that I could not have discovered any other way.
So much for acceptance.
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Where is the " look on the bright side ' post from this member ? I was infuriated to have anyone suggest Laurie chooses to have his health deteriorate because he feels sorry for himself . If anyone has the right to feel sorry for themself it is him , but he does not . At the moment he is just defeated , weak and bloody sick .
I thought the point of this forum was to give and receive support , exchange ideas and benefit from other people's experiences and knowledge . This seems far from your perception that everyone is here to wallow in self-pity .
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There have been many in the past that join thinking they can show the rest of us how we should really be living. My advice: take time to get to know the group. Moosemom gave a great description of the hope and encouragement you find here. I think you aren't facing your disease straight on and maybe you could benefit from the wisdom and knowledge here. Hope you find what you are looking for.
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Hello Sandy and I guess it's goodbye at the same time. As I see it, like all of us here ESRD has stolen away a lot of control from your life and it is hard work to resist the pull into the despair that can most certainly arise as a result. What makes me sad is that because of where you live, a mere chance of circumstance, you have even less control and options than we do. That isn't fair and I can see how we might appear spoiled and bratty to you. Sometimes we are bratty and we can also feel jealous of others whose lives are less constrained for the moment...this isn't necessarily right but is is human and that's all we each are. You are absolutely right to try as hard as you can to see things in the brightest possible way and I wish you all the best. I try too and sometimes I'm very successful and other times I fail miserably. This is a wonderful group of people but if we threaten your attempts to be ONLY "positive" then go you must I suppose. However, if ever you find it hard, come back and we'll try to help you find the sunshine again...sunshine and rain go together and both never last forever.
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Sandy,
I lurked around the forum for about a year before I joined. I made very sure it is a place I thought I could fit into or at least contribute in a positive manner. Here exists a sort of family environment, full of mom's and dad, sister's and brothers, all getting a long for the most part for the collective good. There are a lot of different folks here from different back grounds. They will help pick you up when your down, let you vent when you need to or just slap you in the back of the head when you're acting stupid. That's how a family acts. I am sorry you feel you don't fit in. I suspect two things did not happen, 1) You did not try and get to know the family before you joined 2) You did not give yourself enough time to begin to fit it. Think about it. Go to a house down the block, someone you don't know, just walk in and see how well you fit in. Then try telling them on day one how they should think and feel. I can't even tell my wife how to think and feel and we have been married for over 12 years...that's a real dangerous place to go...trust me...
Lurk around some of the older posts here, you will begin to get to know us in different way and suspect you might come out seeing us in a new light...
I hope you reconsider, I will not plead, I will not beg. And like others have said, If you decide to come back I am sure you will be welcome. I do wish you the best...find support where ever you can find it....
CM
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I'm sorry you feel that way, but everyone has to do their own thing. Maybe a support group that meets in your area would be better for you? Ask your social worker for contacts, or see if there's a peer mentor you can speak with through the National Kidney Foundation (my social worker hooked me up with one). Don't pay attention to anyone who sends you a negative message in response to this post....their feelings are hurt. You just have to take care of yourself. Good luck and God speed, sweetie.
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I think everyone does the best they can. I tend to be a pretty happy/optimistic person for the most part, but that doesn't give me the right to judge anyone else. I can only walk in my own shoes. I can't feel the unhappiness of others so I can't / won't tell anyone else how to fix themselves. I think it would be cruel for me to criticize someone for being unhappy or depressed. To do so implies that depression is a choice. I don't know of anyone who would choose to be unhappy.
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Hey, lady, I have read your posts where you tell people how they should feel and behave. I take offense at that. I have 23 years of ESRD behind me, 23 years filled with positivity, happiness, negativity and depression. Even normally healthy people are not always happy, so why the hell should we be. Some of the people on this forum are very sick and suffering, and I do 't think that it is your right to judge anyone or tell people that they shouldn't fée d'expresses or unhqppy'. Of you have residual renal function, and I suspect that you do if you feel so well on twice a week dialysis, once you don't you may not feel so positive and then you may start to understand where we are coming from. I did great on PD until I lost my residual renal function and then I suffered four years of hell (and that is how I see it retrospectively now I know how bad I felt in comparison to now) until I realised that I had to change my modality. I really do not need someone who has been on dialysis for a relatively short period of time, I how should perceive my illness.
I don't always agree with what people say on here, but I for one get a great deal of support on here, and I feel for those that are struggling with the adversities, challenges and limitations that this disease brings. I'm sorry, but your farewell and some of your proceeding posts really struck a nerve. Go away, and come back if you wish, when you have grown up and have a little more depth of understanding and compassion. I, for one, don't care if you do or you don't, and yes, I am saying what I am saying, partly because you did hurt my feelings, but not just for y
Myself but all those people that I know on here who are having a difficult time at the moment.
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Sandy,
Right now I hope you read this.
First off don't go. I know not everyone has that positive attitude. Partly cuz some have it harder than others or it just how they deal. Non of us were giving a manual on how to deal with a illness that makes it so the only way we live is on a machine. So some live with a real world look at it, some denies, some like you stay positive and others like me have found humor and sarcasm. Does this make any of us wrong? I don't think so. To me whatever gets us to that next day is what counts. Please stay, one I appreciated your out look on it and two no matter how positive you want to be, ALL of us need that support every now and then. I grantee this forum will be here when you need it!
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I just want to take this opportunity to thank everyone on IHD who has EVER read one of my negative, whining posts. I am very well aware that I seldom have a positive attitude about all of this, and I am trying to get better, but I don't always succeed. Not ONCE has ANYONE EVER told me that I should just get over it or should be more positive or should feel this way but not that way, not ONCE, and I am exceedingly grateful. You all have just stood back and let me rant, and then given me an encouraging word, and that was that. I am really grateful that no one here has ever judged me, or at least has never posted anything to make me feel judged.
I'm glad to read posts from anyone who has a much more positive, sunny view of life as a renal patient; it gives me something to work toward.
One reason I post a lot about my negative feelings is because I want others to know that it's OK to feel sad or angry, that it's nothing to be ashamed of. But when those negative feelings become constantly overwhelming, we want to know that, too, so that we can help or at least guide you to professional assistance.
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Dear SandyHD,
I hope you are lurking out there and will take the time to read this.
I just checked in on your blog. Looking at its live traffic feed, there have been several of us from IHD who have read your blog. I tried to leave a comment, but something is wrong with the "make sure you're not a robot" function; I couldn't find a way to scroll down so that I could copy the secret word, so my comment couldn't be posted.
Your blog postings are honest and true, much different from what you have posted here. I was surprised to read about the fear and frustration you really do feel. Those feelings are entirely normal, and there is no disgrace in feeling them. Still, I hope you find your way through all of this sickness and can truly find the happiness you seek. I still think we can offer you some support and information. :cuddle;
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Well that's a shame. We need some positivity to counteract the depressing nature of this experience!
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You can start your own site. Here are a few names:
Happy Ass On Dialy-sis
I Love Dialysis
Don't Worry That Your Life Was Ripped Away ----- Be Happy!
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Sorry u feel u have to leave, i appreciated your positive outlook, sometimes i can get really down and need a good kick up the bum to make me realize i dont have it as bad as some and i am incredibly lucky to have what i do! Ive had this disease all my life, am pretty young, 30 now getting a transplant in 2 weeks but am fortunate enough to have been well for 30 years have a great childhood, great teenage years, study, marry and have 2 kids. Its great u feel lucky and blessed and appreciate what u have, i think its fab, but some people just don't have that outlook so will have been offended by your posts i guess. I personally didn't find u offending but a realist, and worrying /stressing changes nothing!! However i am a complete worrier and stresser and have had temper tanturms huge upsets and depressing moments along this journey, i always get over them and realise how lucky i am but i need to vent sometimes. I think everyone at some point must've had the why me syndrome. Funny i never got this until i hit adulthood! I think the older we get the worse we become!
Im lucky i have a supportive family but others might not so this forum helps them express their fears and worries without wanting to be judged for their fear or upset. I say supportive, my husband has thrown in the old (well i could die tomorrow if im hit by a bus ) line a few times when im on a rant lol.
Anyway simply said, i was on a downer this morning have yet another uti and am sick of them!!! Its nice to have positivity when things suck, i find negativity has a negative effect on me and i go that way whereas positiviy brings me up and makes me thankful. Good luck in your journey :) xx
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We too feel incredibly lucky and grateful for what we have and realize there are people a lot worse off than Laurie . Our health system here in Australia looks after people who cannot afford to pay for their care . Our clinics are attached to hospitals and are not privately owned and operated so we are indeed fortunate compared to some . The nurses at Laurie's clinic are very specialized in renal care and are caring , humane and compassionate , we have generous and caring children and above all each other .
What Laurie does not have is his health nor his youth nor control over what is happening to him . At the moment he is sick , scared and in despair . I resented that anyone could contemplate that his decline was due to the fact that he felt sorry for himself instead of " looking on the bright side " . I pointed out this fact to Sandy who replied that I could choose to be bitter and depressed or choose to be happy about our situation .
I am not bitter or depressed , but just worried about my husband and being new to all this dialysis stuff come to this site looking for solace and information as to how I can help him to the best of my ability .
So , yes I was offended by Sandy's post .
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Sandy,
Sorry to hear you feel like you need to leave. Your decision of course.
I don't post much here, kind of runs in "spurts" depending on how things are going for me. I read a lot here however (without posting). So, I kinda disagree with the "depressing" description of IHD.
For sure, folks *have* poured their hearts out here over distressing aspects of Dialysis, family issues, job issues, and the rest. Many of such feelings expressed really "hit home" with many of us. But the response around here is almost always supportive, considerate, patient, and understanding.
For me my family and friends try their best to understand what life is like for me now, but nobody knows like someone who has "been there/done that"....I have found SO MUCH COMFORT here, just reading posts from folks who have been dealing with this crap for WAY longer than me.....(just under a year for me). When I get to feeling "down" I benefit from reading from the long-time ESRD folks here 'bouts....it is inspiring.
So overall, this place is not at all depressing for me, quite the contrary, and I'd urge you to reconsider.
Come to think of it, this is as good a time as any for me to say
"THANKS IHD FOLKS". :thumbup; :2thumbsup; :clap;
---Dan
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Brenda Seal, I've just gone back and read your earliest posts here on IHD where you outlined all of Laurie's difficulties, and I am just overwhelmed by all of the things he's had to deal with. :cuddle; I just can't imagine the strength and, yes, courage it must take for him to get through each day, especially with him still being so new to PD and with the problems he's been having. I understand exactly why you were offended. :cuddle;
How is Laurie today?
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I, too, am sorry to see you leave. This is a GREAT group. Although I just started posting again, due to alot going on, I just couldn't. Each person here, I admire and feel that are so courageous to endure what they do ---->>>> dialysis -- To be honest, I am not sure I could go through what many go through ---Everyone is entitled to their own feelings, thoughts and perceptions of the dialysis world. I know how it affected my late father, as well as his life and his family. It is a tough road and again, ,, I ADMIRE EVERYONE HERE WHO GOES THROUGH DIALYSIS IN ORDER TO LIVE -- that is the only way I can state it -- When I think of the emotional aspects that one goes through, the process of acceptance, etc., well, again, I just don't know how I would act, or react --- I think about this often as my father was on dialysis and my mother was in a Stage that should she have lived longer she might have needed dialysis, I don't kinow. My father lived a healthy life, exercised, never ate salt, etc.. but his kidneys failed -- It was tough when he decided to stop dialysis, at the age of just turning 91 -- But, he lived life to the fullest, even at his age - going for coffee with his female friend in the mornings, lunch out, going to the community clubhouse where he lived, visiting with friends and playing pool/billiards three times a week, even in his scotter and oxygen... I state this because there is life after dialysis ---
Please stay and let this wonderful family help and support you in your dialysis journey
Roberta
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Thank you MooseMom for your understanding . Now I have had time to calm down I am putting Sandy's comments down to her youth . My youngest son is also 26 and he has more compassion in his little finger , but then he has lived with his father's illness all his life .
Laurie is slowly coming good and has just had some soup so fingers crossed . Thank you again , your words mean a lot .
Brenda
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Pity you feel the need to leave... Just because people aren't absolutely blooming thrilled to be dealing with this disease doesn't mean that their feelings, postings or opinions, are any less valid than anyone else's...
I don't have Kidney Disease (yet!), but I'm caring alone for my almost 75 year old mum who does... She also has Parkinson's Disease which complicates matters, and is now starting to develop dementia as a result of it... So I do her PD several times daily, and all the other caring duties associated with a frail, older person, and I wouldn't have it any other way... But I am struggling... I can't deny it, and I'm tired... I am very thankful that I still have my mum, and I'll care for her until my last breath if need be... And people have tried to tell me that I only have Mum due to dialysis and I should be delighted, and praising dialysis to the high heavens... Yes, my mum's still with me, and dialysis plays a big part of it, BUT I believe that my efforts have a little part in her survival, too... Making sure she's properly fed, clean, toileted (TMI, but reality), warm, safe, etc., by me has at least some small part in it...
However, I DO hate dialysis, and the control it has not only on my darling mum's life, but on mine, too... I HATE it when she's close to death because of a dialysis complication... I hate it when she's ill due to some other renal matter... That's life!... I'm not always going to be bright-eyed and bushy-tailed... I often come onto this forum, and it's always my very first port of call when my mum's in hospital.. Why would I come to such a 'negative' place???... Because it's the most positive, loving, supportive place to be when the renal chips are down... It's where I can cry, worry, and fret until my heart's content... Poor Bill (Iketchem) must have the soggiest shoulder in history, I've cried on it so often, but that's what friends are for, and that's what people here are... Friends... And like all friendships, we all have our ups and downs... Some of us have more downs than ups, but like all true friends, we're not just there for the good times... We're not just fair-weather friends, we're there for the bad times too... And I've thanked God SO many times for every person on this site...
I don't complain constantly on this forum (I don't think I do, anyway, and I would hope that my IHD pals would tell me if I did!)... There are other complications in my own situation that make caring much more difficult, and I've had some serious lows along this rocky road... I won't go into the difficulties, it would take me too long, but it's 'out there' on this site, and if other members want to refer to it, please feel free... But one thing is certain and that is without this site, I really don't believe I'd still be sane at this stage...
I hope you don't leave, but if you decide to do so, well don't let the door hit you on the way out!... We're all dealing with this dammed disease in our own way, in our own time, and thank God In the love and support of each other....
Oh and if you take the time to research the site, you'll see the great banter, laughter, and downright wicked teasing that goes on... There's a huge amount of fun here too... Take a look at some of the things members do for each other... Cash going (quietly and without fuss) to members who are struggling, lovely thoughtful gifts sent to each other because it's someone's birthday, wedding, anniversary etc., or they're having a hard time, and need a little boost, or just 'because'... We're NOT negative... We look after each other, we care about each other and what we're going through... The good, the bad, and the downright ugly!... And we DO look after each other...
Thanks to every one of my IHD pals... Thank you all for the love and laughter we share... Don't know what I'd do without you all... Now if you'll excuse me, I've to get my mum fed, showered, dialysed and bedded down for the night, and hope that the Parkinson's doesn't disturb her (and my) sleep too much tonight...
Take care everyone...
Love at all....
Darth...
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I hear ypu Darth . My the force be with you xxx
Brenda
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I hear ypu Darth . My the force be with you xxx
Brenda
Thanks Brenda!...
Don't even think Master Yoda could stir the force in me these days!....
Hope all's well(ish!) with you and your 'other half'.......
Love...
Darth...
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we cope witrh this disease in our own way. i came to this sight when i was very low, and had a lot of issues going on, if someone said some of the things shes saying, that i chose be unhappy... i woulda strait up snapped. i dnt feel like its a choice. i think we go along greeat for a while, then everything gets put into perspective3 and its extremeely overwhelming and yes its okay to wallow in pity, i used to give myself one night, where i could sit in the closet in the dark and cry, vent it all out, the next day i'd wake up and be okay and ready to go.
as i said before i came to this site at one of my lowest points, found nothing but support here, not one negative thing was said toward me. as far as negative posts, yeah we all have posted them but hey this s*** sucks we have that right to be able to ventevery once in a while .
i thoroughly love this site, i check it everyday, rigth after facebook <my addiction> i can spend hours reading different things ffrom as far back as epoman and goofynina posts to thinkgs from today
if u want to go, ur loss not ours
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Brenda and Darth, I'd take tenor you Amy day over Miss Moralistic!
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Brenda and Darth, I'd take tenor you Amy day over Miss Moralistic!
Well, thank you, Amanda...
That's cheered me up greatly after a difficult day!...
Hope all's well with you!...
Love...
Darth...
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@Darthvader My dad is 62 has Parkinson's Disease and ended up having a stroke and now has like a dementia problem on top of it. The stroke stopped him from having the problems shaking but now he is not able to tell us something small like if he is hungry. We have to ask him and he will say yes or no. It so sad to see him like that and i do what i can to help. I couldn't imagine adding D on top of that. I know how hard it must be for you. :cuddle;
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All I think about is Paul McCartney with this title, I say hello and you say goodbye. Or atleast I think it was Paul who sang that :rofl;
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All I think about is Paul McCartney with this title, I say hello and you say goodbye. Or atleast I think it was Paul who sang that :rofl;
LOL!!! You are correct...It was the Beatles :)
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All I think about is Paul McCartney with this title, I say hello and you say goodbye. Or atleast I think it was Paul who sang that :rofl;
I think this thread just got a theme song? JK
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I am sorry that you feel this is a depressing site.
From my own experience, I could never have gotten through everything I went through with my husband over the years, especially the last 6 months of his life without this site. The folks here have always been there to cheer me on and listen to me vent or cry. In fact I shared everything we went through those last 6 months. These folks are what has kept me going.
This is a community, no 2 people may have the same experience, but this is a heartfelt community and quite honestly, I'd rather have anybody on this site on my side than a lot of people I've had to deal with in person. It's the same for everybody, everyone is welcomed with open arms, I have never seen it other wise.
You should have given it a chance, but do as you must.
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Such arrogance! I won't miss you.
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I'm very sorry that you've missed the point completely Best of luck to you.