I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Brightsky69 on December 09, 2010, 04:22:37 PM
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I want to vent here because i know you guys have been where i've been and know.
#1 It's starting to get on my nerves when members of my family...friends etc. Bitch and moan about how they have the sniffles and don't feel good. And my BF with the sniffles acts like a needy 5 year old when he gets a cold. He complains all week about how he doesn't feel good and yet NEVER does anything about it. And I think that Hey! I worked full time while on dialysis for 2 years and dragged my butt out of bed each morning and I don't recall bitchin and moaning all day about it. I guess thats why I bought the bumper sticker that says "Unless YOUR kidneys don't work, stop whining"
I know.......I should be thankful that a small cold is all he has to complain about health wise. He says I take such good care of him when he is sick by getting him cold medication but I really just want to get him better so i don't have to hear him complain anymore...That is so bad!!!!! >:D
#2 I know my new transplant is taking it's time waking up....it's only been a little over a month. And doctors are a little bit concerned. They ordered ultra sounds and more blood work. I don't share this with family....I try to keep it to myself. I like to stay as positive...period. I think positive thoughts..I trust in God and keep going on the positive road.
I let my family (or my BF's family) in on one minor little setback and they run with it......"Oh are you gonna lose your kidney now??? Is your kidney going to reject??? Are you gonna have to go back on dialysis??" It's never anything positive...it's never anything like It's going to be ok,...don't worry...your gonna be fine... this kidney is going work for years to come!!! it's all doom and gloom.
I don't wanna hear that so i don't tell them anything.
Then my BF asked me if my nephrologist KNEW I had a kidney transplant. Huh??? He saw my kidney medication sheet had pancreas on it. As in Kidney/pancreas transplant med list....And thats why he asked me.
He acts like I have no clue how to take care of myself. H E L L O This is my 2nd transplant...and the 1st transplant lasted me 17 years. I think i know what I am doing.
:rant;
Ok...I think i got it all out. I really need to get past #1 and let them bi*ch and moan and be more sympathetic. I really wouldn't want anyone to go thru what I have been thru my entire adult life.
Thank you for your support. :waving;
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Re 1...is it a guy thing? I don't want to resort to stereotypes, but men do have this reputation of weeniness when a cold strikes. My husband won't get a flu shot because it hurts, so this year I've just flat out told him that if he comes down with the flu, don't tell me about it. He says he wouldn't dare because then he'd never hear the end of it, and he is so right.
I know it probably comes across as if I don't care about anyone else's petty suffering, but if he complains about anything I regard as rather stupid, I say, "Well, as long as it doesn't involve needles, you got off easily," coupled with a big smile that I hope looks very sympathetic. ::)
So yeah, I'd be more sympathetic if someone who was suffering would DO something about it. I can imagine you trying hard to bit your tongue when your BF starts whingeing. :rofl; If you don't feel sympathetic to people with sniffles, maybe you could just fake it! :thumbup;
Re 2, I'm sure your bf is a great guy, but for him to ask you if your neph knows you've had a kidney transplant...well, I'm lost for words. I don't blame you for not wanting to invite negative comments from anyone. Do you have anyone to talk to who has a more positive outlook on life?
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Hey Brightsky - I'll allow you a rant: this must be a worrying time in your life and that reflects on everyday things.
Hope that things get better :cuddle;
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Anytime he say's somethin stupid, just smack him upside the head so when you explain why it will stik into his memory so he won't gt smacked again. Or was this a rat lab experiment I did for psychology class? I can't remember
I guess he doesn't pay much attention to detail. ;D
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I wish yu could share with family as that would help keep the lid off the tea pot a bit better. I also know that i too would hate that responce that your sure yould get. I am so glad you can come here cause you KNOW we all care and understand. Wishing you some release, and comfort in doing so :cuddle;
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I hear ya on the healthy people whining about a stuffy head cold! But then, have you ever noticed that skinny people always whine about gaining 2 pounds to the fattest person they know? Maybe it's the same thing.
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Its good to get everthing out. I totally feel your pain. I deal with the same things with my BF. Its frustrating, but at the same time I look at it like this...my BF has stuck by my side through thick and thin with my disease he has sat there and stayed strong whenever I couldn't be. Sometimes we have to listen to them complain even when we know its BS and they should get it over because its a sniffle. I think they need to be taken care of sometimes just like we need their help sometimes. Hang in there and I hope eveything goes ok for you.
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I think it's all about perspective really. And no MM it's not a guy thing... like I could give a crap if I get a cold - well I will now - but that's because it could be transplant critical to get right on top of it - not because I can't deal with a little cold. When I was on D and a cold came along I'd just dose up on vitamin C and get on with it.
What I mean about perspective is that we have to remember than many of these lucky people have not had to deal with a condition like a chronic disease like CKD or dialysis or even the extra requirements of caring for a transplant. It's not really their fault I guess, and they're blessed to not HAVE to have that insight born of experience, but yes it does seem a little ridiculous - specially when someone so close to them is dealing with all that you are and have been for so long. A bit thoughtless I guess.
It's funny actually I was talking to one of my D nurses yesterday when I went to visit them. She made a point that really underlines this I reckon. She said she'd worked in D for 18 years, and seen it all, but only now after sharing my journey did she actually stop and think about all SHE took for granted. I think because we are kind of kindred spirits in that we both love to travel and for the past 4.5 years we'd share our dreams - she about where her next trip would be, or how it went, and me about "I want to....." and now that is much much much closer to a reality for me and she's so happy that I have this chance after so long, that it forced her to review her own priorities in that she works too much and she needs to remember to work to LIVE not live to work. I was really quite flattered that I had some kind of effect on her that got her to reevaluate her own life.
About the sleepy kidney. As you know mine's half asleep also, but slowly starting to work. My transplant co-ordinator has been telling me for the past 10 days or so about the longerst she saw someone's take to properly wake up was EIGHT WEEKS. Everyone is different and you can't get discouraged. I have always been confident I would go OK and so far so good. By no means am I out of trouble yet, but everything is going in the right direction (and no D!!!) so that totally works for me. Hang in there!!!
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Most people can only focus on themselves. It's all they think of.
As far as the sleepy kidney, Lori Hartwell told me when she had her 3rd transplant (the first 2 never worked so she had big hopes for the third.) After the transplant the doctors cautioned her that her creatinine had not come down where they had hoped, and unfortunately the kidney would not last long at creatinine of 2.2. She just stared dialysis again, after that last kidney gave out - 19 years later!! I think that's a very good case for being positive and hopeful. I hope all works out for the best! :cuddle;
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Thanks everyone for the support. I dont say anything when my BF moans about a little cold. Or when he tries to tell me how to take care of my self.....I know he is just concerned. I just smile and tell him he is sweet. And yes I bite my tongue. ::) He even thought my bumper sticker was funny.
I do stay positive as much as i can no matter what. Okarol...I was beginning to think that maybe 2.1 is just gonna be my number. 19 years with this kidney sounds pretty good to me. :thx; I am still glad my docs are trying hard to figure out why it's jumping around from 1.9 to 2.1 At least it's never jumped higher than 2.1 and i know it wont. :pray;
RichardMEL - one of my nurses told me she knew of a patient who took 3 months for their kidney to fully wake up.
I know everything is going to be fine and I'll have this new kidney for many dozens of years to come.
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Looking at it from the other side, I'd hate to think that me having a whinge about being ill (and maybe asking Blokey to toddle off to the chemist to get me some remedies) would make him angry. I go through a lot with Blokey and rarely whinge about it (except on here!), so an occasional grumble when I want a bit of sympathy, a few cuddles and an ample supply of tissues (whether it's because I'm poorly or just feeling emotional) is surely something I shouldn't have to worry about and tiptoe round?
I do get where you're coming from with #2; I'm brilliant at remaining upbeat and positive when Blokey feels the whole world is out to get him (even though I'm probably feeling really negative inside) but my MiL is just like your relatives and friends with their negativity, and that does irk me SO much. It makes me want to scream at her!
And bless your boyfriend ... he sounds like he's trying to be supportive! I really hope your new kidney perks up soon ... it must be so frustrating for you.
*huggles* < you can pass one of those *huggles* on to your boyfriend; he might need one too. ;D
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Poppy, maybe it's more about bf's inertia than it is about his whining. If my husband is unwell and whines about it, that's fine; I do what I can to make him feel better. It's when he whines but won't do anything to help himself feel better that I get cross. Most of us renal patients have to work so damn hard to feel anywhere near normal that it's upsetting when we see others be so cavalier about their own health and just can't be bothered to look after themselves and then expect us to be all sympathetic.
I know that just because I am ill doesn't mean that no one else is allowed to be. My illness is irrelevant, really. My suffering doesn't make anyone else's easier to bear for them. But there have been times when I've told my husband that when he feels a bit down or worried about some small thing, he should just look at me and count his blessings. There is always someone worse off than you, and for my husband, that "someone" is me. :waving;
You know how we get told that we are sick for a reason, that there is this lesson somewhere? Well, maybe WE ARE the lesson to someone else. Maybe I am not supposed to learn anything, rather, maybe it is my HUSBAND who is supposed to learn something. Maybe I am just the chalkboard. Maybe your blokey is YOUR chalkboard. :cuddle;
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I think people don't think much about your illness if you're not whining about it. I have been dealing with kidney failure since I was 19 years old and my extended family never thinks of me as ill. I don't know if that is a blessing or a curse.
I remembering my aunt complaining about what a hard time her daughter had going through college, and how it was so much easier for me then my cousin. WTF? I was on PD through three year of college and two years of grad school!
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Bette -
With my 1st transplant and the fact that it lasted 17 years my family really didn't think of me as ill. Since my 2nd transplant my BF's father said in dinner conversation said to me "Well....at least your cured now." Ummm not quite. I find most people are pretty ill informed about kidney treatments. And if you never have to deal with it then I guess there is no reason to learn about it.
Me...if a friend of mine is going through some medical issue then i am usually looking it up online to find out more about it.
We need the same marketing people that the breast cancer people have. ::)
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Everyone has had some really great points on this thread. I think a lot lately about how majority of people don't get involved in and bother to care about others' suffering unless it is their own. Even in our own families people say unintelligent things because they don't bother to be informed. I frequently have to remind myself not to be angry about how unmotivated people in my personal life are to donate to me. I think many of them think, "hey dialysis is keeping them alive it must not be that bad." It really infuriates me. I hate feeling so angry all the time, but I just keep reminding myself that a kidney will come along someday. My BF is a really great guy but sometimes I wish he would take more initiative about learning more about my disease. Wouldn't it be lovely to come home to a renal friendly dinner? :)
xo,
R
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Wouldn't it be lovely to come home to a renal friendly dinner? :)
I made the mistake of letting my husband bring home dinner the other night on his way home. It was pizza. ::) What are ya gonna do?
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Most people can only focus on themselves. It's all they think of.
AMEN and AMEN :thumbup;
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I made the mistake of letting my husband bring home dinner the other night on his way home. It was pizza. What are ya gonna do
Eat it!
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Peel off the cheese, wipe off the tomato sauce and EAT IT!!! Lol.
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:flower; It is true that people are IGNORANT of the Big D. However, being honest before D entered your life did you know anything at all about dialysis??? I did a survey of patients in our clinic at 62% never signed up to be a donor (or really thought about it much) until they were confronted with the reality.
It is just human nature.
However, RANT AWAY, PEOPLE in your immediate family ought to be informed just how difficult it is.
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no kidding billmorina! Once WAY back in college days, i signed up to be a donor, but that was it! until............hubby ends up needing a kidney or D. Ends up as of right now anyway, he can only do D, but oddly enough, i still had a bit of a time signing over my organs. I would give to him even with fear.. Dont know why, just hate being touched, or going under i think, but still, what a shock of how little i knew until now.
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Even medical professional know very little about dialysis and transplant. Last week my obgyn asked me if they removed the native kidneys when you get a transplant. She was surprised when I told her that I had four kidneys.