hateful words

[George Jung]

You have to be patient with the entire situation I think.  Be patient with him as well as yourself.  Don't expect so much right off the bat.  Think positive.  Be positive!  You can do anything you want, not always how you would like to, but no doubt, you can do it.

[Sluff]

You can do it!

[MyssAnne]

Andrea, how are you doing lately? Have you been able to take time off for yourself yet?
Is your husband's swelling/congestion getting better?

[kitkatz]

Words
Benign is a beautiful word
There should be a way to pack more relief into that word.
So many weighty words that don’t really hold anything down.
So many words that float in the air
That don’t really mean anything at all.
Remission-now that is a weighty word that does not weigh enough.
Floating words that make your stomach
Rise up into your throat.
Unreal words that drift past you
In the antiseptic air of the doctor’s office.
Cling like germs
Multiply like a virus
Overwhelm like a rampant disease.
Slide down your ear canal
And whisper about things left undone.
So many words it is hard to catch them all
And keep them in your head
And deal with them.
What words will you miss?
“Daddy watch this”
“Once upon a time..”
Mom! Mom! Mom!
The little voices that creep through daily life
Become still and die slowly.
Will the words hover in the air?
Will you hear them?
Will you be there?
Other words lend weight and hold you down.
Chemotherapy, radiation, dialysis
Hold this word tight:
Fight.
Hold this one even closer:
Love.
Remember they are only words
BE.

By Jbeany and K Soto

[anja]

   What a wonderful poem!  Words, never thought of them as having weight!  Great analogies~~~~

[Lucinda]

HI Andrea,

Hope you are feeling much better.  It is almost harder to live with someone else's health problems than your own.  I have had a number of surgeries over the past couple of months and I would much rather go it alone than have my husband with me because I am fiercely independent and I don't want that taken out of my control. The problem with that is that you don't get any support at all if you just feel like taking a day for yourself and chilling out.  Because I am so independant I feel guilty because my husband questions me when I say I am going to stay in bed for a couple of extra hours on a Sunday. I have a huge job, I work minimum twelve hours a day and I hate that people feel sorry for him because HE has such a huge problem in his life because he has a sick wife.  I am not the one who gets a two-hour nap every day because I work from home. I am the one who works hard, keeps the house clean and I pay the mortgage.  So you see it can goe both ways.  You get no thanks for coping well. 

[andrea_c]

No one has it easy.  I often wonder how my husband gets through his dialysis treatment.  He says he fels alone and no matter how much I am there for him, it is still such an alone procedure. Hehas to deal witha ll the consequences of dialysis.  The ironic thing is that I often feel very much alone in dealing with all the changes associated with this disease. I value all the advice and support I get from folks here. I try to steal  time for myself when I can.  Sometimes I feel there's  a mourning procedure with dealing with a sick relative.  You realize that some of these dreams and hopes you had with that person have died.  It's not easy to adjust.  I continue to take one day at a time. I try to value each day.  I think most of all I want to be recognized as in the struggle with him as well.. If I say I am nbot well , I want to be heard.  I do not want him to answer I feel worse. I would like someone to actually ask how I am feeling and care enough to listen should I answer my true feelings.  I don't wish to be persecuted, either by others or myself if I should say I am sick of dialysis and everythign to do with it. 

[carolyn77531]

andrea, i know how you feel...sometimes i feel like i cant say anything..i feel like i am being selfish....

[andrea_c]

I use to think that I was all alone with my emotions, but I see from folks on here that we are all feeling the same way at times

[goofynina]

I use to think that I was all alone with my emotions, but I see from folks on here that we are all feeling the same way at times

Andrea, i hope you never think your alone, especially when you have all of us here    In case you havent noticed, we are a pretty darn good support group   and even better, we have become one big family, and we are always concerned when we feel one of our family members needs us,  We are here for you 

[andrea_c]

ty

[Sluff]

Things will get better, just hang in there. I'm glad you find comfort from the IHD family.

[carson]

I had a fight with my husband last week. We don't fight much. I think we have a pretty great relationship and I couldn't have asked for a better man than Robin. In fact, if I did ask God for my perfect guy I would have ended up with Robin. Anyway, in our fight he blurted out about "how could I NOT forget you're on dialysis? Everywhere I look there's something - boxes, garbage, noisy cyclers" I said, "great. it's nice to know I'm such an inconvenience to you". We've been together almost 8 yrs. I've been on PD for 10. He's never had a break from being my caregiver. No holiday. No weekend away. It's always about me. Me. Me. Me and my damned health. I can't do anything about it. Neither can he. Sometimes I wish he'd just leave me and find someone without health problems. He looks like a model. I look like s**t. I think he deserves better. But that's just me when when I'm having a "poor me" day. I never stop to consider how he feels about it all. I never stop to consider his needs. This topic has certainly made me open my eyes and realize how selfish I have been. Thank you for posting it - it's the wakeup call I've needed.....thank you.

[goofynina]

I had a fight with my husband last week. We don't fight much. I think we have a pretty great relationship and I couldn't have asked for a better man than Robin. In fact, if I did ask God for my perfect guy I would have ended up with Robin. Anyway, in our fight he blurted out about "how could I NOT forget you're on dialysis? Everywhere I look there's something - boxes, garbage, noisy cyclers" I said, "great. it's nice to know I'm such an inconvenience to you". We've been together almost 8 yrs. I've been on PD for 10. He's never had a break from being my caregiver. No holiday. No weekend away. It's always about me. Me. Me. Me and my damned health. I can't do anything about it. Neither can he. Sometimes I wish he'd just leave me and find someone without health problems. He looks like a model. I look like s**t. I think he deserves better. But that's just me when when I'm having a "poor me" day. I never stop to consider how he feels about it all. I never stop to consider his needs. This topic has certainly made me open my eyes and realize how selfish I have been. Thank you for posting it - it's the wakeup call I've needed.....thank you.

Girlfriend, i know exactly what you are saying, been there with my hubby too, except i am the one bitching about everything and he is the calm one.   He makes everything seem so easy "lets go here, lets go there"  little does he know how much my body hurts to do much of anything anymore,  after letting him get his way for so long, i just cant take it no more then i have the mental breakdown.  It sucks, it totally sucks, but i usually feel better after i "blow up"  i am sure he feels like shit, but i feel better and after all, isnt that all that matters, how WE feel    My hubby is a Godsend and i do try to do things i know i shouldnt.  Why cant you guys go on a mini vacation?  We do.   We pack up the cycler, all the supplies and just go.  Yeah, it's a pain in the ass but believe me, it is nice to get out of your comfort zone and have a little change of pace.  Try it, it will do you a world of good my friend,  Good luck to the both of you...

[Sluff]

Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.

[goofynina]

Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.

Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol,  I do love the wilderness but wouldnt want to sleep in it    Thanks again amigo 

[andrea_c]

it aint easy

[Sluff]

Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.

Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol,  I do love the wilderness but wouldnt want to sleep in it    Thanks again amigo 

This is better than a hotel, I have running water, heat, electricity, airconditioning, kitchen, Bathroom, 2 queen size beds.

[brenda]

Sounds better than the Howard Johnson to me!

[goofynina]

Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.

Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol,  I do love the wilderness but wouldnt want to sleep in it    Thanks again amigo 

This is better than a hotel, I have running water, heat, electricity, airconditioning, kitchen, Bathroom, 2 queen size beds.

Tempting, verrrrrrrry tempting, 

[Sluff]

Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.

Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol,  I do love the wilderness but wouldnt want to sleep in it    Thanks again amigo 

This is better than a hotel, I have running water, heat, electricity, air conditioning, kitchen, Bathroom, 2 queen size beds.

Tempting, verrrrrrrry tempting, 

And you would get to meet the SLUFF. Now all you need is about $ 950.00 for gas a couple of motels to and from which will be about $ 300.00 and then you have to eat at least 1 good meal each day along the way 2 people about $150.00 and then an oil change along the way would be
$ 25.00 Wear and tear on the expedition about $100.00. Total cost   $ 1425.00 well worth it to meet Sluff. 

[goofynina]

Goofynina you could come to WI. You and Sam could stay at our cabin for free. It would just be the traveling expenses.

Thank you Sluff, that is so kind of you to offer your cabin but my idea of camping is staying at a Howard Johnson's lol,  I do love the wilderness but wouldnt want to sleep in it    Thanks again amigo 

This is better than a hotel, I have running water, heat, electricity, air conditioning, kitchen, Bathroom, 2 queen size beds.

Tempting, verrrrrrrry tempting, 

And you would get to meet the SLUFF. Now all you need is about $ 950.00 for gas a couple of motels to and from which will be about $ 300.00 and then you have to eat at least 1 good meal each day along the way 2 people about $150.00 and then an oil change along the way would be
$ 25.00 Wear and tear on the expedition about $100.00. Total cost   $ 1425.00 well worth it to meet Sluff. 

TSK, UGH, you HAD to break it down didnt you  , oh well, the thought was nice while it lasted   lol,  do you realize what i'd have to do to earn that kind of moolah      (omg, i just thought of something Boss would've said to that comment) 

[kitkatz]

I had a fight with my husband last week. We don't fight much. I think we have a pretty great relationship and I couldn't have asked for a better man than Robin. In fact, if I did ask God for my perfect guy I would have ended up with Robin. Anyway, in our fight he blurted out about "how could I NOT forget you're on dialysis? Everywhere I look there's something - boxes, garbage, noisy cyclers" I said, "great. it's nice to know I'm such an inconvenience to you". We've been together almost 8 yrs. I've been on PD for 10. He's never had a break from being my caregiver. No holiday. No weekend away. It's always about me. Me. Me. Me and my damned health. I can't do anything about it. Neither can he. Sometimes I wish he'd just leave me and find someone without health problems. He looks like a model. I look like s**t. I think he deserves better. But that's just me when when I'm having a "poor me" day. I never stop to consider how he feels about it all. I never stop to consider his needs. This topic has certainly made me open my eyes and realize how selfish I have been. Thank you for posting it - it's the wakeup call I've needed.....thank you.

Wait until something happens to him and you have to take care of him. Remember marriage is a two way street.  I know he gets frustrated with you and you get frustrated with him, but....

I watched my husband who has been through hell and back with me, stop by the bed and take off his artificial leg, turn and hop over to the bed, then have to stop, and turn to get into the bed, the lie down and back himself onto the bed.  Then struggle to put the covers over himself.  I was in tears when I realized it was less than a year ago he jumped in and out of bed normally with two good legs.  *SIGH*.

So it works both ways. He has supported me through dialysis and I have supported him through his amputation. Both of these things are never going to go away in our lives, so we have to deal with them.
Have him take a break when he needs it and give yourself a break when you need it. Most of all get a grip and keep on going!

[Sara]

Good advice, Kitkatz.

[tweetykiss]

The problem with my husband is that he has a problem with being an inpatient in the hospital......he almost didn't go in for the kidney biopsy since that requited an overnight stay but lucky for me, he changed his mind at last minute and he ended up getting a private room which we didn't ask for nor expected.......he knows he won't always get that and God forbid he has to go in for kidney related issues, he may not cooperate and go in and that is my biggest fear which puts me in major depression........

I know one thing, if anything happens to my husband, I will go nuts........