I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ladystardust24 on January 27, 2010, 11:52:35 PM
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So I though About it,
I know I am super lucky to be at my unit, I have amazing staff who I love so much! And Even though I'm excited to get listed soon, I will miss my d-unit!
So I know not many people my views on dialysis,
I try to do whatever I can to make it less "work" I call it my "Spa time" and my own time. I know that while I am on dialysis, no one can bug me to do a bunch of stuff. I can nap, play on the computer,watch tv,read,arts and crafts. And I have had people tell me how "Wrong" it is that our nurses yell at us when we do not comply the way we should. But you know what I realized? Its when they stop yelling at you when you should worry, it means that they've stopped caring. Which is worse than them lecturing you why you must take binders/not overdrink. And I feel that all staff should be like that. Sadly many aren't for some, it's just a job, just a 9-5. (ours does inpatient too, so they work overtime if need be..) I have been at dialysis long enough to know that they are trying to show me how to take care of myself the best that I can. And I WANT to go to dialysis, I want to do what I don't always feel like doing, because..well that's what life is. Whether it's work,school,family... you just gotta do it and make the best of the situation you can. Our unit always teaches us that if we overdrink, we should take responsibility. So, you just say.. "today I gained 4.2 too much, and I shouldn't have done that, because I am only hurting myself.. so tomorrow,is a brighter day and I will do better!" My unit has taught me something for when I go off into the world "post dialysis".. I will remember that I can wear my best outfit, be the happiest I can be, and do the best I can do in the world. That maybe life will put me in situations that I don't always like or want to be in, but I will go with grace(as much as a klutz as myself can go..ha) and with style and positivity and I will do the very best I can with it. Because in the end, its all about "state of mind' (easier said than done) But it can be done. As my dad says, "hate is a very strong word, and there is a very thin line between love and hate" So I don't usually "hate" I usually say "highly dislike". So, I "highly dislike" my situation, but I don't "highly dislike" the people I have met and cared and loved me, the lessons I learned, and above everything, Everything I learned about myself." So, I personally do not "hate" dialysis... I "love it" for what its taught me.. plus, I thought I could never do the needles, and I could. I thought I could never sit still for 3.5 hours and I can, I thought I could never be happy on dialysis... And I can. :2thumbsup;
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:2thumbsup;
What a beautiful post, Lady! And it is an attitude like yours that will carry you through some tough times!
Sure there are going to be times that the whole situation just sucks, but being able to look on the bright side will stand the test of time.
Bravo! You are an inspiration!
:yahoo;
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Yes I agree..... finding the positive and working with what you have is the best way..... I miss my last unit too... I can see a big difference between the last unit and the current one..... Big time..... but it ok ...
thx for you post......
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I agree for the most part!! I had another seizure on Monday at Dialysis, and am very lucky that they care enough about me to have called an ambulance, even if I didn't want to go. I love most of the staff and most of the other patients as well. I just wish all units were like that!
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LadyStar.... for what it is worth I totally share your views. Times when I go way down emotionally but generally friends on here and people at my center and a few "flesh and blood friends' get me back on track right away. I'm going to print your post and put in in my little Davita bag. Thanks.
I also love David Bowie (and old guys like me are not supposed to).
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It does not matter that dialysis keeps me alive,
Nor does it matter that being on dialysis has brought me friends all over the world,
I still hate it!
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I have tried all that positive thinking crap and I would rather not deny my feelings and just let them out.
:thx;
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I know I am super lucky to be at my unit, I have amazing staff who I love so much! And Even though I'm excited to get listed soon, I will miss my d-unit!
The horror stories on here always made me glad for the vast majority of my staff at my centers. But having had a recent transplant, I have to say - NOPE - I don't miss the unit! I have gone to visit, I have stayed in touch, especially with one tech in particular who I always used to spend most of the run chatting with when she was working. But we can talk on the phone or go to lunch without going anywhere near the center!
Hang on to that attitude, though, Lady Star! Positive patients do better and have less stress along the way. The healthier you stay, the better you will do when you do get the transplant.
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I'm with ya! I go to dialysis as if it was job, with people who seem to care about me, that I care for as well.
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Let Medicare go bankrupt and see who shows up for work to care about you.
Sorry, but get real.
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It is what you make it. Nothing more and nothing less. If you want to be negtive, then it is. If you choose to be positive, then it is.
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It does not matter that dialysis keeps me alive,
Nor does it matter that being on dialysis has brought me friends all over the world,
I still hate it!
My sentiments exactly!!!
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i've been volunteering my time at dialysis for the the last 3.5 years to reward me for my volunteer work, they kindly allow me to do 5 hours of treatment :2thumbsup;
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I don’t think most of us really like the process of the dialysis treatment. I’d bet that Ladystardust would agree. As Rob said, it is what you make it. And there is not certainty that positive thinking makes your health any better. There is certainty that it makes you feel better and deal with life better. At the same time, there is an absolute that hate and negativity fills your rmind and soul (if not your body) with toxins and adds to the problems already there over which we have little control. I feel better when I get rid of those emotions. No polyana here as I admit that anger and hatred pop up often. I don’t like them because they take up energy I can better use. I try and replace negatives and hatred with positive feelings and love just as soon as I can.
You know, there is little we can do to help each other. Advice and common experiences shared are good and sometimes the first level of support. But in the end we must rely upon our Team of medical professional for information. What we could do is continue to offer positive support reinforcement, and also most importantly friendship. A little love wouldn’t hurt either.
Please don’t take offense. This is only my opinion – you know, the way I feel about this topic.
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Let Medicare go bankrupt and see who shows up for work to care about you.
Sorry, but get real.
You just want to argue. I guess that's ok. I don't think that those here that seem to have a "positive attitude" are wrong. I learned a long time ago not to try and fight battles that I couldn't possibly win. It's pointless. You can be angry or satisfied. It's your choice. I mean it's like taking poison and expecting the other guy to die. I don't think that people with a "positive attitude" are not "real". I think that people with a piss poor attitude need to get a dose of getting real. If Medicare goes bankrupt, we'll just have to deal with that when the time comes. I think, no, I'm sure, that sometime in the relatively near future, something will happen and all the systems will break down. no food, no water, anarchy; those left will have to make it on their own. When asked, "How are you doing?", I used to answer with, "Great!" Now I honestly answer with "Not horrible" You can imagine that you are looking at things with a realistic point of view, but in truth, you are the one that has an attitude that isn't real. Get real. 8)
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Hurlock, We do not know what Rerun and others are going through. I think it is just as wrong for us to criticize them as for them to criticized us for thinking thinking positive. We should be encouraging them instead of of talking like this. I know. I've been quite guilty in the past. But we have to let each person have and express their own feelings. Tell how you feel and deal with it. It is kind of like religion (heaven forbid I should meantion that) in that living it is far more powerful than preaching it. And if the truth be told, I suspect that at any given moment in time our own perspectives my different from + to -. I need to think more about that....
God, I am turning into a Pollyanna... Help me! Lil
But truthfully, Rerun, if Jack in the Box goes broke, who will show up to make us tacos?
No intent to offend anyone. I mainly think out loud when I post in here.
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Some people have a really rough time with dialysis physically or mentally or both. Everyone has to deal with it n their own way. For some people it is to hate it with a passion . For others it is to accept it as a part of their daily life and move on. Hubby has accepted it as part of his life and has moved on. That doesn't mean that there aren't days when he hates the thought of hoking up to the machine but he knows the consequences if he doesn't hook up. He has chosen to be an active member in his treatment and that really helps. He does not actually LOVE dialysis but he has lived a very full life for the 13 years he has been on dialysis. He is more thankful for dialysis I think than actually loving it!! Most times he doesn't even think about dialysis until it is time to hook up. Just my :twocents;
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I understand del, but all I am saying is that Hate is poison to the mind if not to the body (and I suspect it is). I wouldn't fault those who hate but rather try to make them see that hate doesn't help anything. I know, because many times I hate it. It brings me down and grows causing me to hate other things and to look for faults in everything. It is like "an apology" or a "forgiveness". It is worth far more to your mental health than to those to whom you are apologizing or forgiving.
This is only my opinion at this moment in time.
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Let Medicare go bankrupt and see who shows up for work to care about you.
Sorry, but get real.
You just want to argue. I guess that's OK. I don't think that those here that seem to have a "positive attitude" are wrong. I learned a long time ago not to try and fight battles that I couldn't possibly win. It's pointless. You can be angry or satisfied. It's your choice. I mean it's like taking poison and expecting the other guy to die. I don't think that people with a "positive attitude" are not "real". I think that people with a piss poor attitude need to get a dose of getting real. If Medicare goes bankrupt, we'll just have to deal with that when the time comes. I think, no, I'm sure, that sometime in the relatively near future, something will happen and all the systems will break down. no food, no water, anarchy; those left will have to make it on their own. When asked, "How are you doing?", I used to answer with, "Great!" Now I honestly answer with "Not horrible" You can imagine that you are looking at things with a realistic point of view, but in truth, you are the one that has an attitude that isn't real. Get real. 8)
It's nice to see how many opinions there are on what I said, I've been taught in life to never push my own beliefs on others, and i don't like it when others do it to be, I also don't like when someone takes my positivity as being "unreal". I think thats something that really didn't have to be said like that. My whole point had nothing to do with medicare or anything. It had to do with the point, yes life does give you crappy situations.. but you know what? you just have to admit "yes this is crappy, this is not what I might have seen myself doing right now, but I have no choice, i need to find a way to cope with it that helps me deal, and move on with life, because everything shall pass." if anyone thinks that at 20 I rather sit around at dialysis for 15 hours a week.. no. I rather not.I rather not have needles all the time.. I rather not have to watch every single drop I drink or eat.. But this is what I have to do. Yea, I did have times where I wanted to say "f--k it..I don't want to do this anymore.." but then I realize telling myself those things, living in a pity party isn't helping ME... they are just making a crappier situation,worse. I might not have a choice in how things in life turn out, but I do have a choice how I react to them. When you chose to stay negative, in the end, you are just hurting yourself. Yea, we ALL have moments of "wow why me? and my situation SUCKS".. but it is a personal choice to stay in that mindset. When I was severely depressed, i realized it. and I realized "I don't want to be upset anymore, I want to get better.I can help myself in this situation" so I told my staff and my therapist. And we all worked together to help myself. If you sit here, and try to tell me i am not "Real" because I do hold a positive attitude, then you have to think to yourself "okay, so how do I feel saying that? does it make me feel better to think of the glass half empty and try to bring others to the same thing?" Because, for me? If i saw someone who did not feel good about their life situation,whatever that may be.. I would say "how can I help you feel better? how can I be your friend?" thats really why IHD is here. Yea, medicare sucks,dialysis sucks,needles suck,lying exes suck,doing h.w for the next 2 hours sucks,not having shia lebouf here feeding me grapes and professing his undying love for me here sucks.. not to mention the zillion other things in this world that suck... Are we seriously going to sit here and be upset about every single one of them? And if thats your thing, good luck with it.Me? I'm going to think about how lucky I am to be able to get life substaining dialysis, when some don't have that. I will think how lucky I am to have so many people who love me, how lucky that I have wacky friends and family that do make a crappy life situation a little more bearable and a little more happier. :2thumbsup;
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Ladystardust24, well stated. I :clap; :clap; you for your attitude. :yahoo;
All we have is each other, and we have to be there for each other. We may not actually know one another except here, but who else knows what we are going through than those who go through it like us? Who better then to be there when we need support? You may have friends and family, but they don't go through what you have to go through. The people here, do.
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Ladystardust24, well stated. I :clap; :clap; you for your attitude. :yahoo;
:beer1;
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omg, i think i'm in love with Ladystardust2, too.
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I think it's wonderful to look on the bright side whenever possible. It was hardly possible for me when I was on dialysis, unless someone can think of a positive surrounding vomiting uncontrollably every single session, migraines, and a rash.
If a nurse or doctor were to yell at me, though, it would be the last thing they do as my nurse or doctor. That is unprofessional and abusive, and I fully agree with the people who say it is wrong. I have been in this situation way too many times - never again. And heaven help the medical person who yells at one of my children and then tries to argue that they just care too much. But perhaps you did not mean 'yell' literally?
I hope you can hang onto your attitude, it really will see you through a lot, but also forgive yourself for the days when you cannot find the positives anywhere.
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Well most of the time.. yea not "literally" but our units really different than others I have been to, I have spent most of my life around these doctors/nurses.. and many of them have become like family. The few times(luckily!) that they really had yelled at me.. was under very good reason, I had done things I should have not done, and I could have really really not made it through because of what I did(or actually) didn't do. I almost went septic due to my choices. And I'm really glad I did have a doctor who really did yell at me and do that whole "mothery/disapline" thing. Otherwise, I wouldn't have understood the severity in my actions.. hence not learning from it, and learning not to do it again. I have known my doctors/nurses since I was a little kid.. so they are like my extended..parents to say, I think some of us think differently about things, and for me, when my staff does try to be "parent-like" it HAS made a impact on my life. My dad does do his "thang" but lucky for myself, he did get help from my medical staff... I think it;s really how you think about "yelling". Yes, she was very pissed off.. she knew, that I knew better than how I had acted and treated myself. and of course she was upset at this. From a totally personal point, I am so glad I do have medical people who do care enough about me to be parental figures, to really have given it to me when I did something that could have really put my life in danger. She actually then came back and told me she was sorry for yelling at me, but she sat with me and told me she didn't want to see anything happen to me, and that she understood what could have provoke what had happen.. it was nice to know that. And there was another time where I had done soemthing realllyy bad.. and she didnt yell at me. in fact she gave me a hug and sat down with me..and listened and they all organized all the help I needed, and they made sure I was OK the whole time through. We really are like a family unit at our unit.. haha my good friend brianna who has visited us, can tell you. we are a kooky awesome bunch! lol.
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I understand del, but all I am saying is that Hate is poison to the mind if not to the body (and I suspect it is). I wouldn't fault those who hate but rather try to make them see that hate doesn't help anything. I know, because many times I hate it. It brings me down and grows causing me to hate other things and to look for faults in everything. It is like "an apology" or a "forgiveness". It is worth far more to your mental health than to those to whom you are apologizing or forgiving.
This is only my opinion at this moment in time.
I hate the word "hate" dan!! There is always some good to be seen in everything. Always have to try to find the bright side of things even when that bright side is a very faint glimmer!! :beer1;
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Ladystardust24, well stated. I :clap; :clap; you for your attitude. :yahoo;
:beer1;
I applaud you too. Your attitude is similar to my husband's!! :beer1;
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AND I think it's really unfair to state that if people didn't want to go to work if they weren't paid for it that it some how that refects on whether they care for their patients! I love my job, I care for the children I teach, but I wouldn't be there if I wasn't being paid. But back to the topic, to me, I am in this situation wehter I like it or not. I can be grumpy and see the worst in everything if I like - but it aint gonna help me none. So, I might as well be as happy as I can. And I believe I can make that happen by having a positive outlook.
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I'm like Hanify -- I absolutely love my job (teaching). I care deeply for my students and try very hard to move them along in this life. I worry about them, and not just when they don't perform as well in school as I know they can. I have students I taught 22 years ago who still stay in touch with me after all these years. We (the students and I) have formed bonds with each other that have lasted long after they left my classroom. However, if I my paycheck were to be cut off tomorrow, I would not go back to school. I would have to find another way to support my family because then the choice would be love of my job or taking care of my family, and my family definitely comes first. I would assume that dialysis nurses would have to support their families, too, and would have to find a way to do that if they were not being paid to be dialysis nurses. Now, if I won the lottery ... well, that's a different story. I would probably still get up in the morning and go to school....
BTW -- Marvin's dialysis nurse would still show up even without a paycheck! I've been his home hemo nurse for three years and I haven't seen a check yet!! :rofl; :rofl; :rofl; :rofl;
But, I'll get back on topic so I won't be criticized. Marvin and I don't hate dialysis -- even after 15 years and almost 2,200 treatments. How could we hate something that has kept him alive for all these years? No, he doesn't love the actual treatments themselves, but he does love what they do for him (aside from keeping him alive, they make him feel better). We are thankful for the opportunity to have dialysis in our life because without it, Marvin wouldn't have a life at all. We have always seen it as a positive thing, always accepted it as a part of our "fate," and always tried to remember that while it is not always easy or pleasant, it does have wonderful results. Being a dialysis patient is a part of Marvin's identity (it doesn't define him and who he is, but it is a part of him); therefore, to hate it would be to hate a part of Marvin. Not going to happen here.
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OK you guys win. I'm going to go write "I hate dialysis" on a piece of paper and put a match to it. All my feelings will go up in smoke and I'll be positive.
:flower;
It makes me smile ;D the people who comment... who are NOT on dialysis. See.... happy happy happy!
I'm pretty sure the reason people go to therapists is due to suppressed feelings.
I've been doing this a long time too, and my feelings have been hurt more than once when I was in trouble and it was a weekend or at night and my doctor who I thought loved me and cared about me didn't even check on me for days. It is a reality check or get real. It is how you read it. It is what you make of it.
I doubt anyone thinks the employees at Taco Time Love them. Children in a school aren't on life support.
Keep positive and you probably will do better in life and then end up in theroapy. No, (JK) I hope you do well.
:pray;
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It makes me smile ;D the people who comment... who are NOT on dialysis. See.... happy happy happy!
In my situation it is my husband (on dialysis) who is MUCH more positive about it than I am.
My attitude: dialysis takes away 4-5 hours of his time every day.
His attitude: dialysis gives him 20 hours of time every day that he would not otherwise have.
I work hard to adopt an attitude more like his. :2thumbsup;
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Hurlock, We do not know what Rerun and others are going through. I think it is just as wrong for us to criticize them as for them to criticized us for thinking thinking positive. We should be encouraging them instead of of talking like this. I know. I've been quite guilty in the past. But we have to let each person have and express their own feelings. Tell how you feel and deal with it. It is kind of like religion (heaven forbid I should meantion that) in that living it is far more powerful than preaching it. And if the truth be told, I suspect that at any given moment in time our own perspectives my different from + to -. I need to think more about that....
God, I am turning into a Pollyanna... Help me! Lil
But truthfully, Rerun, if Jack in the Box goes broke, who will show up to make us tacos?
No intent to offend anyone. I mainly think out loud when I post in here.
I don't think that I was criticizing any one. Rerun is the one with the sharp tongue. I was just pointing out that being angry or sad about something any of us can't do anything about, is pointless. I don't really like the process of dialysis. I do 4.5 hr. When about 3.5 rolls around, I'm ready to go to the extreme, just like anybody else. To say that the care givers really like us is and over statement. I know that they really seem to like us, but we are their job. I'm sure that it takes a special person to do that kind of job.
There was a guy that was in our unit (he left and went to another unit) that was really unpleasant. He was loud and was always angry about something. They drew him down to low, he itched uncontrollably, all kinds of things. Every day it was something. He disrupted an otherwise peaceful environment. He would threaten violence to the caregivers; man, woman, anyone. He blamed the caregivers for his condition. But the caregivers were always polite and caring, even in the face of a raving maniac. It must have taken a mountain of patience.
I'm sure that they're given courses in how to be polite, even nice. Every day, all of the caregivers stop to talk to me. I'm not too good looking, I weigh 300 lb. and I'm a dialysis patient.
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Well hurlock if you lost some wieght you might be able to cut down on the dialysis time...... something to think about.... we still have lots of choices...... but we cant control everything...... People are going to be who they are and act the way they want no matter what...... Dialysis doesnt have to be the only place that they will behave that way..... I hate stop lights and having to wait for them....... I hate waiting in lines at the store....... but I have learned that I can not do anything about those situations..... if I want to go places and buy stuff at the store.... then I just have to deal with it...... I hate training for nxstage and the fact that I am spending 5 to hrs to train every day just so I can go home....where as I was only doing 3 hours three times a week........ but I want to be free of in center so I will put up with the training time...... I guess we do what we need to and sometimes what we want to do.......itsall about needs and wants...... I put up with the needs and look forward to the wants........
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Truthfully when I read this thread from the first to the last post, I am feeling neither Love nor Hatred but rather Sadness. This is a subject of not right or wrong but rather what is going on at any given time in one’s life. I cannot say that I love dialysis other than to make a point for something. I cannot say that I hate dialysis either. Dialysis is merely a tool, an option if you will, for those with kidney disease. Yes, it is a very complex tool. I can say I am thankful for the option to use it or not or the option to seek out other avenues or not. I can also say that at this very moment in time, I am OK with the option I choose. I can say nothing about tomorrow. Even yesterday I may have been a bit wishy washy about what I’m doing.
I can say though, that I am sad this morning as I read these posts. You know, I have to understand Rerun’s point of view. In her post are many things to think about. First, and most trivial, is I too despise those little flowers and other Happy Happy Happy Messages unless they come from a particularly good experience the writer is having at the moment. I am right now looking at the little flower opening and shutting and smiling. It makes me want to puke. I am also looking at Rerun (not our moderator but Peanut’s Rerun) and it is making me smile a little. Humm, sadness has many emotions I guess. I recognize the need for the rofl, etc. I do forget to use them. I recognize the need for the Beers from my special friend – though he has a lot to say and often I wish he’d say something else. Lol But I’ll take a nice root beer float when offered.
Please understand that references to Taco Bell and Schools are merely to make a point. No one is or was comparing tacos to dialysis. However; the technicians at my center would not be able to exist on their salaries alone. They are drastically underpaid therefore they must either be dedicated or desperate. They actually beg at times to stay overtime or work and extra shit. Who in their right mind other than the desperate or dedicated would want to deal with all that blood and other things I don’t want to think about this early in the morning?
I’m a little (haha) older than Rerun therefore I most probably have had more therapy. No one loved me. They didn’t even help me resolve issues but rather gave me the tools to use in resolving my own issues. I have a lot to say about the therapist who got me here, but I’ll save that for later (I hear a gasp of relief). I am thankful I at least to have some happy days and/or hours. Is it fake? Maybe! Does it make me feel better temporally? Absolutely! Speaking of being a little older than Rerun, at 69 going on 70 there are many who think Medicare and dialysis is being wasted on me. May I RESPECTFULLY DISAGREE! (lol, kind of).
This paragraph is to Rerun only and a personal plea to her. Are you still writing? When I first joined this site you had posted lots of really humorous and well written little snippets or essays. I miss them. Have you any new ones you can post? Do you have any plans to start up again? I actually printed some and took them to my center where people would lol out loud (my favorite line from Monk) about them. Please do some more or post some you’ve already done. They are greatly missed. I hate (don’t like) seeing talents like that wasted.
To Hurlock: I'm not picking a fight with you either. It is just that I'm learning to see more than one side to any disagreement. I do think (know) staff is taught how to act to different situations. I also think they react to the treatment they received from us. Your point is well taken.
To all here: My point is, to the extent possible, we must get hatred out of our systems. I too dislike stop lights and long lines. But hey, stop lights can stop disaster too. (I know because Schroder is just getting over serious body damage (Schroder is my car).
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To all here: My point is, to the extent possible, we must get hatred out of our systems. I too dislike stop lights and long lines. But hey, stop lights can stop disaster too. (I don't because Schroder is just getting over serious body damage (Schroder is my car).
:beer1;
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Hurlock, Tye and DW.... you are all finally making sense. I too hate red lights but I know I have to put up with them, but when it turns green and someone behind me honks..... that is when I put it in park and go back and start hitting their car with my fists. I am pleasent at dialysis but when they forget to turn ON my uf and I'm 2 kilos over that is when I stand up for myself and shit hits the fan. I'm over the point of thinking all nice and maybe they are too busy and underpaid to do their jobs..... especially when I've heard about their big drunk last night.
I will try and be more positive. This site is my dumping ground so I can be positive in my real life. People who know me say what a good attitude I have. They don't know about my dark secret of IHD.
I should not have ruined this post by even typing it it. I'll try and just spew on other posts about dialysis.
:bestwishes;
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Come on Rerun. Don't say that. I know this bothers you that we like you. We'll try our best to bash Rerun more so she can dump more. But I could tell from your writings that you had a good personality (not postings). So let's RUMBLE....and thing except Religion..... This may be religion but I'll start: Obama is the 2nd coming of Christ!
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LOL (out loud)
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Hey wait a minutie...... being negative is postive........ being mad at certain things is positive..... it takes all these emotions to make to world go around....... we Dont want to be happy all the time.......and who wants to fake life......there has been many great changes in my life and in the life of others when dealing with our negative thoughts....... So get mad deal with it and be sure to move on and get living life.
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Oh, tyeflyl, go play with your frogs and the ....
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Hey wait a minutie...... being negative is postive........ being mad at certain things is positive..... it takes all these emotions to make to world go around....... we Dont want to be happy all the time.......and who wants to fake life......there has been many great changes in my life and in the life of others when dealing with our negative thoughts....... So get mad deal with it and be sure to move on and get living life.
:thumbup; (wait, are you just teasing me) ???
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Dan I dont have a donkey like you...... :rofl;
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I can honestly say I love my donkey. Can you say the same for your frogs?
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aaaah The true love of the beast............. could be a book could be a new topic..........
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I try to do whatever I can to make it less "work" I call it my "Spa time" and my own time.
I wish my daughter would have had that attitude when she was in the clinic. I remember trying to push her to get more time on the machine because I knew it would be better for her - I about got my head bit off! I didn't know what it was like to sit there, mind my own business, blah-blah, yada-yada.
Sorry, guess I could only see it from a parent's perspective. I just remember her looking like a zombie when she was going through it. I felt like a lot of it was because she wasn't getting enough treatment. Some of it might have been because she was a skinny kid. I remember reading somewhere it actually helps to have a little weight if a person is on dialysis.
Anyway, I remember us being two extremes - her not wanting to talk about it, me not wanting to shut up! It did all work out, she didn't disown me like she threatened to - and I learned to calm down a bit.
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So did we exhaust this topic? Thanks Ladystardust and Rerun for giving us such different perspectives. I did learn a lot from each of you and all the others who posted. To me, that is what its all about anyway. Learning!
Excellent view point, Plugger. Another invaluable lesson.
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I will say: Dan, you do find some of the finest avatars.
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Thanks Plugger, but I can't take all the credit. Most come from other IHD members. It has become fun for us all and regardless of how I feel about dialysis, I still LOVE fun. So if you find any donkeys in compromising or interesting situations, please send.
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Perhaps because I'm NOT the one on dialysis in my house I have no right to say how I feel about it...but, like Aleta, my husband (who IS on dialysis and has been for years and years) has a much more positive attitude about it than I do. Kind of makes you sick, huh, Rerun?
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Hey wait a minutie...... being negative is postive........ being mad at certain things is positive..... it takes all these emotions to make to world go around....... we Dont want to be happy all the time.......and who wants to fake life......there has been many great changes in my life and in the life of others when dealing with our negative thoughts....... So get mad deal with it and be sure to move on and get living life.
This is so true. You can't be positive all the time, it just isn't "normal". But you can't let things weigh you down where you can't function. I prefer to look for the best in situations. The old "it could have bee worse"thought. Dust myself off, get up, and deal with it. Sounds like Rerun does that, deals with it. Don't think she grumbling all the time. She looks at things and sees how they are. You have to do this to take care of things. Rerun, I like you. Deal with it :rofl; :rofl;
All the views here have valid points. Theyare relivant to the poster's experiences and how they deal with the fustrations dialysis presents. Plesse don't think less of someone if things are different fromteir view point. We don't always know what other factors invade their lives and help forumlate their view points. There are so many factors to consider. The staff at one facility you may attend may not care for their jobs and patients the same as they do at another. Same for the medical professionals you see. They too have "off" days. The care givers, friends, and family of a patient may vary on how they deal with dialysis. Then the patient may have alliments and physical problems other than dialysis which fustrate them at times. God knows, I wish I could walk and stand without support. One time my wife asked me "If ypu had to coose. Would you rather have two ankles, or two kidneys?" I immediately said ankles. I could do day to day things beter. But, I'm never going to get 'em. I just have to deal with it. It could be worse and I'm glad it isn't.
I know this isn't the right thread, and I don't want to start something by this. But the reason I know there is a God is because God gave me both my wifes when I needed someone the most. My first wife taught me to appeciate life, it is short but you can help other people get through it. I was at a low point after my first wife died. I had forgotten things I learned from her. Grief does that some times. I would have made you all angry if I had been here. I was so negative. Life was unfair, and their was no point to anything. I didn't care if I lived or died except to be there for my mother as long as she lived. After that, who cared. But< I was given a new life. Someone who cared for me, to help after I needed it. Someone who made me realise that the world is not a dark, hororable place where you exist till you die. Now, I have a new life, grand kids (something I never even thought I'd see) . It's not perfect, but nothing is and I am greatful to be here to enjpy it.
The point is, it's your life andit is what you make of it. Others can help. But you have to make it better.
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So if you find any donkeys in compromising or interesting situations, please send.
Always on the outlook for that sort of thing! :laugh: This has been a great thread for bringing out some of my bitter and sweet memories - like to cut back on that bitter, but I tell myself it is character-building.
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As a person on chemo and dialysis I would like to add that I truly truly believe that both these treatments don't have a hope in hell of keeping someone healthy unless the person looks at it with a positive attitiude. I also take offence at the implication that a person who is not on dialysis somehow can't discuss it. Paul is in this with me hook line and sinker and it affects his life every bit as much as it affects mine. No, he doesn't do the actual time on a machine, but by God I don't wish having to be the person watching their loved one on it on anyone.
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Hey wait a minutie...... being negative is postive........ being mad at certain things is positive..... it takes all these emotions to make to world go around....... we Dont want to be happy all the time.......and who wants to fake life......there has been many great changes in my life and in the life of others when dealing with our negative thoughts....... So get mad deal with it and be sure to move on and get living life.
I agree with this!
Hey, my recent new quote... "Hell hath no fury like a Russian-Jewish woman scourned" lol.
After my annoying icky break up with my ex, and everything broke out... I felt as a scourned woman, especially after everything went down, I did a little bit to make myself feel a bit better, like maybe letting it slip what kind of adult entertainment my ex likes... because why golly, it WAS computer,and internet, and it was in my history box still... :2thumbsup; (next time he should really clear the history... :oops;) And lets just say, not that I am against any of those adult things, what he likes could be considered a wee bit embarrassing,at least to your other manly man friends..and any potential ladies.. So, no I am not Miss Pollyanna everyday of my life, I am of course a true Boston girl, And when we have a redlight/green light/ no light.. We have a long standing proud tradition of yelling at other cars, especially when they got their drivers license in a happy meal. So no one is obviously always happy. I think It's cool to see how many opinions there are on things... And how people tend to deal and see things differently. I feel you can always take something away from another person, everyone has something valuable to teach you. Like my dad has taught me to always keep an open mind, and to sometimes give people the benefit of the doubt. And my mother has taught me that sleeping with any wealthy eurotrash won't actually make you happy, but it might buy you some designer shoes and boobs. Also lovely motherly advice "don't marry for love,marry for money" ... Thank goodness I got boobs, and I'm not a shoe girl, and that I disregard whatever she says. ;D
So, I don't go into dialysis thinking they are only nice to me because they are getting paid, Because, my primary nurse didn't have to buy me any gifts for the holidays, or when she went to India with her boyfriend, My primary floor nurse didn't have to sit with me three days straight when I lost my transplant and cried, They didn't have to be there for me rubbing my back when I was sick so many times, and they didn't have to do anything they do,do.. but They.. do. They Don't have to care,but they do. money or not, Believe it or not, Some places, people still really do care about their patients/students/people around them. My own dad who works in the other Harvard hospital for adults, He is a translator, yet.. when his patient was alone and dying he did sit with him, even though he was not getting paid for it. He did this many times. He has done what he really didn't HAVE to do, but because he does care for his patients. In life, You will meet people who do wish you well, and people who don't, you will meet people who are fake and unpleasant... dialysis or not. I don't blame anyone for "hating" dialysis or the long treatments,the restrictions dietary and life... i think its totally normal to get upset over it all.. and if you didn't I'd be frankly quite worried about it. And If you truly feel being upset about it and just letting it all rip all the time.. then by golly, do it. let it out. There has been times When Ive sat with my best friend crying and shouting about crappy guys who lead you on,guys who lied,who told you they were ok with your stuff then ran for the closest exit,family that just doesn't get it,getting a B when you know it was a A paper and the various million other things that can upset a 20 year old woman.. Or anyone for that matter. Fact is, Yep, Our health situation isn't ideal,fun or what we imagined ourselves doing. And I do highly dislike being a walking medical disaster. But, we do it anyways, and we put our best foot forward doing it(mine is my left, but I like to show off my sexy leopard print/self done swarovski crystal bedazzled leg brace, so I tend to try to put my right one forward more now :) ) So for me, I'm going to try to keep my head up, try to stick to my idea that my medical scars,sparkly leopard braces add to my sex appeal rather than look like a Peg Bundy penguin with a limp. And I hope that everyone here will keep on supporting eachother and take good things from each other.
BTW Rerun,I do like your wit, I think your 'tude is witty and keeps firing these boards up!
...and In the meantime, heres a dancing banana, they entertain me so :D :bandance;
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Oh never mind. If i say what I'm thinking I'd be bragging.
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I may just boil down to ..... I lost my court case against the Fitness Club and I'm pissed!
It did take the wind out of my sails. I'm now not going to take on the homeowners association who is a a big rip off also. It doesn't matter I would lose that too.
But, I can still take on DW because sometimes I "think" I win. :boxing;
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Yea, I know RR. Sometimes I think people don't actually read my posts. Are they are too long and rambling. Or just not relative to the topic.
Hey did you post about the Fitness Club and the HomeOwerners
Assc. I used to be President of our Home Owners Assc and I can tell you we had zero power over what the resident allowed. My job was basically to get phone calls about weird looking characters in the neighborhood. And in this neighborhood that was almost every day.
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First of all let me say: I do not love dialysis. I never will love it. I tolerate it and at times hate it with a passion.
I would rather spend my time at the mall
or going out to eat with my husband and family,
or go to the bookstore,
I would rather some nights do anything than go to that dialysis treatment.
But I go every time, because I know without it I am dead.
I also know Epoman started IHD.com because his posts about reality at dialysis were being removed from sites he was on.
He wanted a place where the reality of dialysis could be seen in its full gory.
The good and the bad of dialysis is discussed on this board every day.
I for one am grateful for it.
I will continue to hate dialysis, even though I know it gives me life.
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I think everyone who has posted here agrees that dialysis is really crappy. I see nothing in your post, Kit, that anyone would disagree with. I would like to thank you and Epoman for allowing the rest of us to come and post our own thoughts about the subject.
I don't care for malls.
But I'd like to go out and eat.
Cute quote in today's paper that says?
A man will spend $20 for a $10 item that he needs.
A woman will spend $10 on a $20 item whether she needs it or not.
Off topoic. Hit me with a cyber bat.
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I wish I could dialysis today...... :P
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I may be a pretty positive person generally - but even I know that's just silly Tyefly :rofl;
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One of the "good things" about being on dialysis, I got to come here and know you all. Beleive it or not, I feel my life has been enriched by that. By the way, sure I hate dialysis, it is a pain in one of Dan's donkeys. :rofl; :rofl; :rofl; but without, I'd have miised out on a lot of things. I don't like missing out on things.
Ladystardust24 , thanks for starting this thread. It is very good.
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I wish I could dialysis today...... :P
When I was doing just 3 days a week, I often felt like this because I felt crappy so I asked for 5 days a week and felt ever so much better. I always worried about long term damage to the heart and bones etc and I found it difficult to exercise properly until I was getting more adequate dialysis. If I'd stayed on for longer than the 10 months I did, I'd have asked to spend more than 2 and a 1/2 hours per session too, in order to get better clearance of the larger molecules.
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I think it is great that you love dialysis! I care very much for my patients and hope that they know that. Yes the situation sucks, having to do dialysis, but I believe that I can help my patients and teach them as much as they have taught me through the years. Its nice to know that ,as a patient, you appreciate us in this sucky situation.
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I went to dialysis today and I am sure glad that I did..... I feel so much better.....its hard to explain...... I think no I know it hard on the body to go two days off of Dialysis...... Just one more week and then I am not going two days off again........ it feel that good...
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I think it is great that you love dialysis! I care very much for my patients and hope that they know that. Yes the situation sucks, having to do dialysis, but I believe that I can help my patients and teach them as much as they have taught me through the years. Its nice to know that ,as a patient, you appreciate us in this sucky situation.
I think lots and lots of the suport team at dialysis think like this. Thanks for expressing it.
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Ive read this topic with interest and ..still HATE dialysis ! I find it interesting to read about the relationships between staff and patients ! My unit is a ..THEM and US ! While most nurses will answer any questions about dialysis , thats about it ! I know their first names and thats about it ! They never interact on a person to person level . Now im not asking them to be my best friend but a little light chat about ordinary day to day stuff would be nice. But no we are kept at arms length , and there is no banter between the patients either ! We might say 'hello' as we go in , but our beds are all placed at an angle where we cant see the upper part of the next person! and to be honest nearly everyone on my shift just sleeps. I did get put near one younger guy one day and we had a real good chat all through the session. It appears that didnt go down well cause we stopped others from sleeping! and we have never been put near each other since! So no i dont 'love' going into dialysis , no its not a social event and i count it a lucky day if i escape some sarcastic comment from the sister on the unit . The past 2 being ...It had been minus 11 here and i had a t shirt on and a fleece, only to be told , god you've got enough layers on !!! Then one day while putting me on she said , watch you phos n pott cause you live on takeaways dont you ....WTF? you order loads of pizza's. Excuse me i said i dont know who you are thinking of but the last pizza i had was about 12 months ago ! and as for takeaways, hardly touch them. So no dont expect me to love going into dialysis , its crap , if i had any other choice i would take it ,i do it out of duty , because it keeps me alive. Give me back the solitary of PD anyday , give me back the control of PD anyday and then see me smile !
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I think you should look into home haemo Kickstart. They going ahread with it in England now for people on their own - so maybe it's something you can consider. You'd be a great condidate cos you were already fine with home dilaysis before.
Is it worth enquiring?
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KS I think you should move to another unit.....one that when you go in they are happy to see you ....... thats the way mine was and I bet their are a lot of them........ MOve it will be better on your health....... why continue to do this to yourself.......You are very unhappy......do something different....... something has to change and only you can do it.....
You sound like a strong women..... take charge...... :beer1;
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I think you should look into home haemo Kickstart. They going ahread with it in England now for people on their own - so maybe it's something you can consider. You'd be a great condidate cos you were already fine with home dilaysis before.
Is it worth enquiring?
Already enquired and been told NO WAY because i live on my own !!!
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KS I think you should move to another unit.....one that when you go in they are happy to see you ....... thats the way mine was and I bet their are a lot of them........ MOve it will be better on your health....... why continue to do this to yourself.......You are very unhappy......do something different....... something has to change and only you can do it.....
You sound like a strong women..... take charge...... :beer1;
Sadly we dont get that option over here ! We get placed at the nearest unit to us and thats it !
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The first step to recovery is admitting you have a problem!
I love dialysis- I hate Kidney Disease
I have been on 2.5 hours X5 Since October, and 2 days ago I asked to be put on 3 hours X5, I have really bad RLS and when my dialysis time increases I don't have restless leg.
I tell people in my centre that I am increasing dialysis and they think I am insane. BUT I feel so much better!
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Already enquired and been told NO WAY because i live on my own !!!
Wasn't there someone esle just the other day in England who was finding out more about this? Sorry - can't recall the name at the mo. But he'd found in the small print that it was actually possible? Dig a bit deeper Kickstart. You know the people at your unit are likely just to have given you the easiest answer! Maybe this is something you could get your teeth stuck into - getting home dialysis pushed forward a bit more.
Fixed Quote - Rerun, Moderator
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I think you should look into home haemo Kickstart. They going ahread with it in England now for people on their own - so maybe it's something you can consider. You'd be a great condidate cos you were already fine with home dilaysis before.
Is it worth enquiring?
Already enquired and been told NO WAY because i live on my own !!!
We just need to find you a roommate!
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Wasn't there someone esle just the other day in England who was finding out more about this?
Here ya go: http://ihatedialysis.com/forum/index.php?topic=17407.0 (http://ihatedialysis.com/forum/index.php?topic=17407.0)
:thumbup;
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I second the roommate thing, and, I think we need to find a nice cute one.. :)
I must say, over 20 years i have had my bout with annoying,ignorant staff.. (my unit is a hospital one, so..its a hospital) So, also as I said, i have been lucky enough to have my dad teaching me the ropes, especially since he does work in the same institution. I also myself tend to be the independent,"feisty" type. So i take no b.s. When they say they don't know and I feel something missing. or they try to be patronizing. I had(more than once, but I will just go with this one time.)
I knew what was wrong.. and it had happened after a procedure, so in order to rule it out, they had to do a CTscan.. the doctor didnt want to.was rude too. And he didnt want to give me a real reason why not do the scan... So i simply told him.
"fine, send me home. BUT. I want you to put it in the chart, that I did ask you for a CTscan, that I told you what I knew it was, but that you refused to do it, and your reason why you refused... I also want your signature and name and your medical ID number and title. Because If something does happen,I want it to my on file that I did tell you I wanted A scan, and I want it to be on file why you denied that. And if something does happen because of this. I will go straight for your medical license."
And of course, he did what I wanted, because who is going to risk their license over a ctscan? yep.. and by the way I was right. And I told him that next time listen to your patients.. and that I have known myself for 20 years, so again.. next time.listen and respect me, I am allowing you to treat me, not someone else, you. So show your patients some respect, because one day, you will be a patient, and who will hope that someone shows you more respect and kindness than you showed me. he did apologize. haha.
So yea, I say. I have told other friends of mine who are new to doing what our parents had done before, and generally anyone else who is annoyed. haha because it does work. And btw if they ask if you are threatening them you simply say 'no. I asked you for certain things because my own health and care is my priority. and you as my doctor did not do what you had to. So no it is not a threat, it is a promise, you screw up, I will make sure you do not do it to another person." So yes. I am a war general when it comes to my health. haha. I do what I got and take down anyone who is preventing me from winning my battle. be it sickness,or a idiotic resident. :D
(btw when saying the whole thing, remember, make sure it is the ATTENDING that puts down the reason he is denying it, that you did ask for it.. and his information. not a resident/intern. make sure the top guy takes the responsibility.)
SO yes. mu haha. I'm a little renal russian-jewish napoleon. muhaha. (I still have my KGB-looking/sounding papa, right by my side, if they don't fear me..the definitely fear him. haha. you don't mess with our family members)
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I like you, Ladystardust24!
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Ladystardust 24 , you go girl ! Thats the attitude i have and love ! And ...Ziggy played guitarrrrrrrr !
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I second the roommate thing, and, I think we need to find a nice cute one.. :)
I must say, over 20 years i have had my bout with annoying,ignorant staff.. (my unit is a hospital one, so..its a hospital) So, also as I said, i have been lucky enough to have my dad teaching me the ropes, especially since he does work in the same institution. I also myself tend to be the independent,"feisty" type. So i take no b.s. When they say they don't know and I feel something missing. or they try to be patronizing. I had(more than once, but I will just go with this one time.)
I knew what was wrong.. and it had happened after a procedure, so in order to rule it out, they had to do a CTscan.. the doctor didnt want to.was rude too. And he didnt want to give me a real reason why not do the scan... So i simply told him.
"fine, send me home. BUT. I want you to put it in the chart, that I did ask you for a CTscan, that I told you what I knew it was, but that you refused to do it, and your reason why you refused... I also want your signature and name and your medical ID number and title. Because If something does happen,I want it to my on file that I did tell you I wanted A scan, and I want it to be on file why you denied that. And if something does happen because of this. I will go straight for your medical license."
And of course, he did what I wanted, because who is going to risk their license over a ctscan? yep.. and by the way I was right. And I told him that next time listen to your patients.. and that I have known myself for 20 years, so again.. next time.listen and respect me, I am allowing you to treat me, not someone else, you. So show your patients some respect, because one day, you will be a patient, and who will hope that someone shows you more respect and kindness than you showed me. he did apologize. haha.
So yea, I say. I have told other friends of mine who are new to doing what our parents had done before, and generally anyone else who is annoyed. haha because it does work. And btw if they ask if you are threatening them you simply say 'no. I asked you for certain things because my own health and care is my priority. and you as my doctor did not do what you had to. So no it is not a threat, it is a promise, you screw up, I will make sure you do not do it to another person." So yes. I am a war general when it comes to my health. haha. I do what I got and take down anyone who is preventing me from winning my battle. be it sickness,or a idiotic resident. :D
(btw when saying the whole thing, remember, make sure it is the ATTENDING that puts down the reason he is denying it, that you did ask for it.. and his information. not a resident/intern. make sure the top guy takes the responsibility.)
SO yes. mu haha. I'm a little renal russian-jewish napoleon. muhaha. (I still have my KGB-looking/sounding papa, right by my side, if they don't fear me..the definitely fear him. haha. you don't mess with our family members)
You sound like my husband!! He takes no BS!!
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inspiring post i draw and read the bible when i'm on dialysis which makes time fly by.dialysis is a blessing i know this elderly man whos would have been dead 8 years ago if it wasnt for dialysis.God bless you and all that are on this situation.
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Nurse Wratchett do you have any thing to add? Where should the line be? If we are educated and know what we want, should we just put our foot down? That's what we had to do when I did haemo - but we felt kind of rude. But they just had this OBSESSION with fluid, and wouldn't listen to us when we said it wasn't going to be good. So I almost always had what you're describing Phil - sore eyes, vomiting couldn't walk after etc - untill we started refusing to let them take more than 1.5l off in any 5 hour session! Boy, now I've found ihd and know so much more, they're going to see a wayyyyy stroppier Bernadette than they saw before.
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I've said before, Bernie, that my Thanh always discusses with me my weight gains, checks ankles, bps, lungs, etc. then together we decide. I can take 1.5 off easily. On occassion she' bump it to 2, but then this smart ass tech who know more than god has been coming around and bumping it up to 3. I can't do it cause it ain't there. At first I didn't know what she was doing, but then Thanh turned the machine around so I could see. The tech said I didn't know what I was looking at anyway and turns it back. Needless to say she may not how nice the nice Dan can be but she ain't seen the lights for Dirty Dan yet. I am not too far above lobbying to get the b***h fired.
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Nice point Dannie - call me Bernie one more time and you're a dead man! :rofl;