Am I just talking to the walls?

[paris]

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       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?     And did you know they deliver 40 boxes at a time at home?              Has he not been listening for the past three years?     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     This is the only place I can SCREAM.         Now I have a headache!!   Is Easter candy good for a headache? 

[okarol]

The walls are better listeners 
  We hear ya paris!

[dwcrawford]

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.

[Sunny]

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!

[Wattle]

I hear ya too Paris.... loud and clear!   

I have one of those at home too and I have been on dialysis for 4 years. 
He is wonderful in so many ways... just not anything medical. I think he likes to pretend it isn't happening in some way.   
I am tired of being patient, caregiver and advocate too.

[willieandwinnie]

Okay, all you guys members, don't read this. paris, what you need is to      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.  I am going to go in here and have some Easter candy because I have a sympathy headache for you. 

[Wenchie58]

 

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!   

[kellyt]

 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.   

[Chris]

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.... 

Just take Beth with you thenext time you go to the doc, she has a better understanding. 

[monrein]

So sorry that you're feeling so frustrated Paris.   

[Romona]

  Mine tries, but sometimes I just keep to myself. 

[Zach]

 
 

[kitkatz]

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!

[Sluff]

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.
 
 

[monrein]

Sluff, what a very lovely post in response to Paris.

[dwcrawford]

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

[paris]

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 -   (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".   

Also, I got a surprise text today and it made my day perfect!  Thanks, Sluff        And, Dan, you have already become so important here.  We love you "sick" humor   

OK, pity party over----back to business as usual   

[Wattle]

    

[Joe Paul]

Sorry Paris, I hope you are feeling better today 

[cherpep]

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  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. 

[willieandwinnie]

  Oh paris. 

[MandaMe1986]

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.

[David13]

Paris, we are all here for you anytime!   

[Slywalker]

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.   

I just keep trying to explain...... and explain.... and explain......

 

[paris]

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!!       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!      Life is good  ---- got to go figure out what to make the Lord and Master for dinner tonight      

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  (   )