I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: paris on April 11, 2009, 03:27:34 PM
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My husband told me today about a woman at work who has a husband that is on dialysis. He was doing " aah -- in ? aaahh" Me "in-center?" Yes that is it. But he felt horrible and now he is doing it at home. Me "What type" aaaaahhh--the kind with fluid :banghead; Me "hemo or peritineal?" ahhhh---the kind in the stomach. And he feels much better, they are even going on a cruise. Did you know they will deliver your supplies at your destination? :banghead; And did you know they deliver 40 boxes at a time at home? :banghead; :banghead; :banghead; Has he not been listening for the past three years? :banghead; It is very frustrating. When we talk to the transplant surgeon; I am always surprised when he asks the simple,easy questions that he should know. I am tired of being patient, caregiver and advocate. I just want to be one, or two -- not all. Sorry for the :rant; This is the only place I can SCREAM. :banghead; :banghead; Now I have a headache!! Is Easter candy good for a headache? :rofl;
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The walls are better listeners :rofl;
:cuddle; We hear ya paris!
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Yes, Easter Candy is good for a headache (maybe not chocolate) and probably good for nerves. We need you and your calm voice! Have a whole bag of candy.
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Paris, sometimes I wonder about what my husband knows regarding kidney disease treatments too.
I'm not sure they are absolutely clear on how all the different dialysis modalities work, or all the issues regarding transplants. Sometimes I wish I could just tell my husband to do all the research and let him make the decisions about my health. Then maybe he would see how difficult and complex our choices are. Try some chocalate Easter eggs, I hear that helps stress headaches!
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I hear ya too Paris.... loud and clear! :cuddle;
I have one of those at home too and I have been on dialysis for 4 years. :banghead;
He is wonderful in so many ways... just not anything medical. I think he likes to pretend it isn't happening in some way. :urcrazy;
I am tired of being patient, caregiver and advocate too.
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Okay, all you guys members, don't read this. paris, what you need is to :Kit n Stik; :Kit n Stik; :Kit n Stik; to get is attention. Has he been living in a cave? I understand what you are saying. I understand more about Len's medical problems and he knows squat about mine. I have a list in my purse of my health issues and medications that I take because Len sure doesn't know. It is enough to just piss you off. :banghead; I am going to go in here and have some Easter candy because I have a sympathy headache for you. :cuddle;
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:cuddle;
Paris...they are men....it's an affliction. They dont even understand it when its THEIR medical issue. (Most men here excluded, because ya'll have done such a good job educating each other)
There are times I think my dog undertands me better....well...at least he pays attention when I talk! :rofl;
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I understand, Paris. I tried and tried to prepare my husband for when I was going to start dialysis. He didn't seem concerned at all. His normal response was "You have to do what you have to do" or "We'll get through it". yadda yadda yadda Then when I found out I was going to transplant I tried and tried to prepare him for what to expect with me being in the hospital, recovery at home, etc. As loving as my husband is, he's just as annoying and stubborn.
He recently put in a security camera system at a downtown DaVita clinic. A week or so later we were having dinner with his brother and wife. At one point I overheard my husband tell his brother "Good thing Kelly got a kidney because there is no way she would have made it through dialysis. No way!".
First off, I wouldn't have had a choice if I wanted to continue to live. Second, you (he) know NOTHING about dialysis (even with the stuff I've told him - my fears, my concerns, what is done during a dialysis session). And third, don't presume to know what I will "make it through" thank you.
It just kind of pissed me off. >:(
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Paris,
That's why we are here, we are better listeners from a distance. Does he ever come online and read on here? Sems he should at least do some minor investigating.
We pretty much all have or are going thru what you just went through.with some sort of family member or friend.
That's why I do things alone, I don't want to be next to someone who ask a dumb question who should know better and where myself and the doctor are going what the.... :rofl; :rofl;
Just take Beth with you thenext time you go to the doc, she has a better understanding. :2thumbsup;
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So sorry that you're feeling so frustrated Paris. :cuddle;
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:grouphug; Mine tries, but sometimes I just keep to myself. :)
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:cuddle;
:-*
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I think my very smart husband knows nothing about dialysis or anything else medical with me. Good luck to both of us if I need his help. I hear ya Paris! Just have to take them at face value and love them anyway!
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Hey Paris,
I think as unfortunate as it is, that most people no matter how close to home it may be, just don't get it. It's not really about hearing/listening it is about being dependant on you to comprehend what is going on with your situation, yours being dialysis. If the roles were reversed he would be more attentive and forced to research. I believe he loves you but like all of us, life goes on and we depend on good ole Paris to be there when we need you. And I have to admit(and I only speak for myself) I probably don't listen to everything, because many times Christy will have to translate what was said at doctor visits, and many times at meetings with other people, because I don't recall what was said or maybe I only heard what was important to me at the time.
No matter what we are hear for you. You are such a blessing to IHD and my life, I'm sure your husband feels the same, but just doesn't understand the full spectrum of your medical situation.
:grouphug;
:-*
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Sluff, what a very lovely post in response to Paris.
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Paris, I echo the sentiments of Sluff. Also, I’m sure I have the listening capabilities of your husband. I just wish I had someone to talk to like you, I do want to thank you and many others on this site for your encouragement, explanation and for letting me be silly so much of the time. My “sick” humor is my major coping mechanism. I’ve had fun and I’ve learned so much about the illness (can’t yet force myself to call it by its name) and also about myself. Thank you, Thank you, Thank you…
And to those who operate this website, Thank you. You are all doing en enormous service. Just wait until I start in the center in a couple of weeks! I’ll do my best, in some small way, to pay it forward.
Dan
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Thank you friends, for letting me have a safe place to vent. I ate lots of chocolate and got rid of the headache and grumpiness! Still have the husband - :rofl; (I need his insurance!!) I'm just kidding! I need to learn when to stop, and remember I can't, nor should I try to do it all. Getting things ready for Easter, just doing everyday chores, stressing over the upcoming wedding and sorting all the tax junk; I hit a wall yesterday and felt a little overwhelmed. And I think the transplant update testing brings up lots of stress. My husband never knew I was upset. I hide too much sometimes. But, today was good. My daughter, Melissa, hosted our Easter festivities and let me sit back and enjoy the day.
I cannot begin to tell you how important each of you are to me. Your kind words lifted me, filled me, and renewed me. I am grateful to call each of you "friend". :cuddle;
Also, I got a surprise text today and it made my day perfect! Thanks, Sluff :cuddle; And, Dan, you have already become so important here. We love you "sick" humor :rofl;
OK, pity party over----back to business as usual :2thumbsup;
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:cuddle; :-*
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Sorry Paris, I hope you are feeling better today :cuddle;
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I missed the pity party?! Shame on me.
I gotta say that I think the most frustrating part is that your husband was willing to listen to the person at work talk about dialysis details - but never heard yours?! He definitely deserves a :Kit n Stik; for that one. But, at least you can take away from all this the fact that he did learn something about dialysis. I'd take advantage of it and ask him a couple of questions about that person's care, treatment, and well-being. Some well-placed questions about the 'friend' could help him understand your situation in the long run.
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:grouphug; Oh paris. :cuddle;
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Paris I am so sorry! I feel you. My dad is now going through some of the things I have been going through for years now and is all "wow did you know". Drives me crazy. Smack him over the head every once and a while.
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Paris, we are all here for you anytime! :grouphug;
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Paris - just know you are not alone. My husband was so clueless when I was doing cancer treatments and if possible - even more clueless through my kidney failure journey. He didn't understand why I was tired ALL the time - "didn't any of those pills help?" He did participate in the heavy lifting of the PD supplies that came every other week. For some reason I find that if a man can't just "fix it" many of them go into a denial thing. I don't know. :Kit n Stik;
I just keep trying to explain...... and explain.... and explain......
:bunny:
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I think I add to the problem. I do not complain, he never sees me in pain or sick. I try to keep everything as normal as possible. Still have a hot dinner everynight, take care of house, bills, birthdays, kids and grandkids and volunteer. I passed out in church a few weeks ago (low BP) but, we stayed till the end of the service and I still walked to the car, a couple of blocks away. My sister tells me I need to "look" sick and act pathetic!! :rofl; But I also want life to be as normal as possible. Good thing is, I have him so spoiled after all these years, he has to keep me! It is always good to know I am not alone in all of this and all of you "get it" . That is why I love you soooooo much! :cuddle; Life is good ---- got to go figure out what to make the Lord and Master for dinner tonight :rofl; :rofl;
Slywalker, you are right, they just want to fix things and if they can't, being in denial seems to work. And for all the marvelous men at IHD, you know we aren't talking about you ( :secret; ) :cuddle;
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Ah HA! So you're the one paris... you're the woman that makes it looks like we can "do it all!" Well, knock it off! :rofl;
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Ah HA! So you're the one paris... you're the woman that makes it looks like we can "do it all!" Well, knock it off! :rofl;
What okarol said. :rofl;
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Men, men, men! Don't you all just wish we'd all move to some other planet????
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Men, men, men! Don't you all just wish we'd all move to some other planet????
:rofl; :rofl; :rofl; I use to say that a woman without a man was like a fish without a bicycle. :rofl; :rofl; :rofl;
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OMG....Paris, are you my twin? I can't wait to get home and see how mad he is at me for calling his shrink and ratting him out about not taking his meds. Should be fun. Eggshells, walked a hundred miles on them. Carrying on, pretending all is well....it gets old. He is our primary cook. He does most of the housework. I have a 8-5 job so I have an escape. He does canine volunteering 3 days a week and wears his butt out. Then we veg in front of the TV and don't communicate. Gotta love it.
I guess I may be jumping the gun on the dialysis possibilities but he sure has the other crabby I hate live symptoms.
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As much as we complain --- what would we do without you guys? :cuddle;
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Men, men, men! Don't you all just wish we'd all move to some other planet????
:rofl; :rofl; :rofl; I use to say that a woman without a man was like a fish without a bicycle. :rofl; :rofl; :rofl;
HEHE.... what in the world does this mean?
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Hmmmm funny that all the women understand it, eh? :rofl; :rofl;
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Bwahahaha! :rofl;
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Hmmmm funny that all the women understand it, eh? :rofl; :rofl;
DW,if you have to ask, then you are a guy! :rofl; :rofl; :rofl; :rofl;
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Next time you decide to have a Pity Party please invite me. I am great at those kind of parties! :grouphug;
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Paris - just know you are not alone. My husband was so clueless when I was doing cancer treatments and if possible - even more clueless through my kidney failure journey. He didn't understand why I was tired ALL the time - "didn't any of those pills help?" He did participate in the heavy lifting of the PD supplies that came every other week. For some reason I find that if a man can't just "fix it" many of them go into a denial thing. I don't know. :Kit n Stik;
I just keep trying to explain...... and explain.... and explain......
:bunny:
Hmmm...I always assumed that was "an engineer thing"! my husband's an engineer and so are all of his friends. They are all like that. Paris, you are not alone. I have tried to get my husband to read books about the subject, but that never worked out. I even got him to join IHD, but he posted like 8 times and has not been back since. I don't think he really read much on here either. He is more interested in the computer and playing his guitar. I suppose that's his way of relieving stress lately, but it drives me crazy!
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This thread just makes me cry- my husband would never read anything about his condition, he would not learn his diet, he would not come here to read anything, he took his meds the way he thought was best, to hell with the Dr., he drank what fluid 'he could handle'- he used to tell me 'I learned it- so he did not have to'. And look where that got us!
I wish he would have been proactive in his care. I am so glad you all ARE, and I wish your family members were more supportive.
One thing I did do for him, that he would at least listen to, I used to read your posts out loud to him.
I figured he could learn from the multitude I read to him, so at least he wouldn't feel so alone in his condition.
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To Paris, Wenchie, Willieandwinnie...
No matter what you say, "a fish can't ride a bike and wouldn't even need one". That makes absolutely no sense.
haha (i just figured it out). Now what would I call thaat? Is BS appropriate?
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Oh glitter! I'm so sorry to hear that! Thank goodness he at least had you for as long as he did. :grouphug;
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Paris, my wife is a nurse. but she works in the '" eye surgury center" . She doesn't know very much about dialysis. When she makes dinner, she always puts the wrong things in. She makes "healthy choice" dinners. Too much salt tasteless garbage. She goes to the Casno and loses money, and leaves me sitting til' sometimes 10:oo pm. but I love her.
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It makes me sad to hear all these stories about spouses who are uninvolved, unconcerned and, I'm sorry, don't seem to care.
I'm on my own, so I don't have that frustration. After reading these stories, I think it would make the whole process that much more difficult.
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To my husbands defense, he does care. It is just overwhelming and I think it is easier to not think about. I will always be the caregiver in our family, even though I am the one with kidney disease. I get frustrated some days :banghead; My role was established years ago and I am having a hard time changing the definition of who I am. The person (me) who did everything, planned all events, cooked every meal, paid bills, cleaned, taught school and now does little of that. And we have been married FOREVER so, maybe his age has something to do with accepting change. Men do become "grumpy old men" at some point :rofl; :rofl; Sorry, men, you know we still love you :2thumbsup; IHD gives me a safe place to complain without upsetting my family----and you guys know how I feel, so you get it.
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To my husbands defense, he does care. It is just overwhelming and I think it is easier to not think about. I will always be the caregiver in our family, even though I am the one with kidney disease. I get frustrated some days :banghead; My role was established years ago and I am having a hard time changing the definition of who I am. The person (me) who did everything, planned all events, cooked every meal, paid bills, cleaned, taught school and now does little of that. And we have been married FOREVER so, maybe his age has something to do with accepting change. Men do become "grumpy old men" at some point :rofl; :rofl; Sorry, men, you know we still love you :2thumbsup; IHD gives me a safe place to complain without upsetting my family----and you guys know how I feel, so you get it.
We do know, Paris, and we care about you! I am so glad you are proactive regarding your own health. Although support from family and friend is very important, in the end, that is what really matters. And we want you around with us for a long, long, long time! :cuddle;
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It makes me sad to hear all these stories about spouses who are uninvolved, unconcerned and, I'm sorry, don't seem to care.
I'm on my own, so I don't have that frustration. After reading these stories, I think it would make the whole process that much more difficult.
You know Stacy sometimes I feel the same way. I am 23 and I like to think that I don't need anyone in my life. And I don't, but my children do. I could take care of them on my own, but it would be so much harder on them. And Matthew loves me, and is a wonderful father. I just think with everything you have to take the good and the bad. Yes it dose add extra stress, but most of the time it is worth it.
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To my husbands defense, he does care. It is just overwhelming and I think it is easier to not think about. I will always be the caregiver in our family, even though I am the one with kidney disease. I get frustrated some days :banghead; My role was established years ago and I am having a hard time changing the definition of who I am. The person (me) who did everything, planned all events, cooked every meal, paid bills, cleaned, taught school and now does little of that. And we have been married FOREVER so, maybe his age has something to do with accepting change. Men do become "grumpy old men" at some point :rofl; :rofl; Sorry, men, you know we still love you :2thumbsup; IHD gives me a safe place to complain without upsetting my family----and you guys know how I feel, so you get it.
TO MY WIFE'S DEFENSE, she does care. It's just overwhelming for her because she' got problems of her own. She's always been the bread winner in our family and lately she's had to deal with a back injury - surgery and dentures. We've only been married 20 yrs, but it seems like forever. People do become grumpy old people, :rofl; :rofl; I don't really see that there is that much difference between men and women, other than plumbing. IHD is just where I live while my wife is out gambling, or at work.
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We seem to be in the same boat, Hurlock!! We are family here, and it is nice to have each other, especially because we all know. Next time your wife goes out at night, check the chat room and see if anyone is there. We have a pretty good time there most nights. We can let off steam, gripe, but mostly we make each other laugh. Come and join us--usually around 9 east coast time people start gathering. Look forward to seeing you there. :clap;
And I can be really grumpy some days :rofl;
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Hmmm...I always assumed that was "an engineer thing"! my husband's an engineer and so are all of his friends.
Nope, nope, not an engineer thing. Hubby and I are both engineers. But I am the one who follows most of the details. When he is in the hospital, I had to make a standing rule that if a doctor enters the room and I am not there, he is to call me and put the phone on speaker so I can hear what is said.
A typical hospital conversation before the rule:
Me - Hey honey, I'm back. Did any doctors come in while I was out?
Him - No. Just some nurse.
Me - Uh huh. What did this nurse look like?
Him - [description]
Me - Ok, that was actually the nephrologist. What did he say?
Him - Blah blah blah. Nothing, really.
[two hours later we'll be chatting]
Me - I've been reading about this. I'm really surprised no one has asked about your [symptom].
Him - Oh yeah, that nurse guy said something about that.
Me - Nephrologist. What did he say?
Him - I don't really remember.
Me - Well, I wonder why he didn't recommend [medication] for [symptom], I've seen where they've had really good results with that.
Him - Oh, yeah, that sounds familiar. I guess he said he was prescribing that for me or something. Maybe.
:banghead;
You get the idea.
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Great post, rocker!! You made me laugh :rofl;
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To my husbands defense, he does care. It is just overwhelming and I think it is easier to not think about. I will always be the caregiver in our family, even though I am the one with kidney disease.
Ditto for mine!
Hmmm...I always assumed that was "an engineer thing"! my husband's an engineer and so are all of his friends.
Nope, nope, not an engineer thing. Hubby and I are both engineers. But I am the one who follows most of the details. When he is in the hospital, I had to make a standing rule that if a doctor enters the room and I am not there, he is to call me and put the phone on speaker so I can hear what is said.
A typical hospital conversation before the rule:
Me - Hey honey, I'm back. Did any doctors come in while I was out?
Him - No. Just some nurse.
Me - Uh huh. What did this nurse look like?
Him - [description]
Me - Ok, that was actually the nephrologist. What did he say?
Him - Blah blah blah. Nothing, really.
[two hours later we'll be chatting]
Me - I've been reading about this. I'm really surprised no one has asked about your [symptom].
Him - Oh yeah, that nurse guy said something about that.
Me - Nephrologist. What did he say?
Him - I don't really remember.
Me - Well, I wonder why he didn't recommend [medication] for [symptom], I've seen where they've had really good results with that.
Him - Oh, yeah, that sounds familiar. I guess he said he was prescribing that for me or something. Maybe.
:banghead;
You get the idea.
Not paying attention to medical things is just a male thing! ;D
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I had another moment like this yesterday!
He got cataracts from the pred, so he had a lens replacement years and years ago. After the lens replacement, he was very angry that "no one told me the artificial lens was fixed-focus!" But, you know, done is done. But he refused to consider having the other lens replaced.
Over the years, he would still occasionally bitch about it. And I spent years being vaguely angry that the surgeon (whose name I can't even begin to remember) would leave out this vital information about the operation. He often would bring it up as an example of the general incompetence of every doctor he has ever dealt with.
So yesterday, we go for an eye exam. So I'm chatting with the optometrist during my exam (right after she tells me "Everything looks very healthy, the age-related deterioration is proceeding right on schedule!" Yeah, thanks, don't you have a pill for that or something?) and I ask her about his exam. She mentions the cataract is still there, and we talk about driving, and she says "Well yes, he should never drive without glasses, given that his lens is focused at computer distance." I nod wisely, as if I know what she's talking about.
So later....
"Oh, honey, the doctor mentioned your lens being focused at computer distance, what was that about?" "Oh, well, before the operation the doctor said the lens would be focused at a certain length, and he asked me where I wanted it focused. So I told him computer distance."
:banghead; :banghead; :banghead;
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I can understand your husband's attitude, Rocker.
He and I are from Mars; you from Venus.
;D