Life isn't fair!

[willowtreewren]

My husband is almost always in a good mood and positive about nearly everything in life. We were at a birthday party the other night and I heard him say something uncharacteristic, revealing that his attitude had gone south.

Last night, while we were setting up for his treatment, I asked him if he were feeling all right. "Life isn't fair," he said. No matter how I tried to reframe our situation (usually what he does for me) he just kept saying that life isn't fair. It takes alot to get this man down.

I realize that we have it so much better than so many folks. And I try not to whine, but this year really sucks. The straw that got to my husband is that he has to eat dinner every night while connected to the dialysis machine. Planning meals that he can eat with one hand is a challenge for me, but not nearly as difficult as his position. And it sucks.

Plus, this year we will have to live off some of our retirement savings since enrollment is down (compliments of the economy). All of the income we have is going to pay for insurance. That is something that simply cannot be cut from the budget. Eating out with friends will be greatly limited, and recreation isn't going to happen, not only for financial reasons, but because there won't be time.

But it is the evenings that seem to have gotten to my husband. Since we can't afford the staff to allow us to leave work at a reasonable hour this year, we are working 10 hours every day. Then we come home, rush to get the machine set up, and once he is on, I fix dinner. As soon as his treatment is over, it is time for bed so we can start the whole process over the next day.

And this year instead of having a weekend day off from treatments, we are taking Thursdays off. hat allows us to have parent meetings, staff meetings, and go to board meetings. We'll get one Thursday night off each month. But we will have to dialyze both of our weekend days in order to be able to attend Thursday meetings.

I really understand why my husband had a hard time getting his head wrapped around this schedule. Having my husband feeling down last night nearly unhinged me. I struggle with depression anyway. He is usually my picker-upper. I guess I will have to pull myself together better since depression is seeping into his bones.

But, on the other hand, even if life isn't fair, at least he is alive and relatively healthy barring renal failure. And surely the economy will start looking up sometime. And we do have some savings so we can keep our insurance. And we have each other. And IHD! Thanks for listening.

Aleta

[Brightsky69]

I know that feeling well..

I always try to tell my self that dialysis happened to me for a reason.....because I am strong enough to deal with it. Not everyone could handle what we go through everyday.
We were dealt it because we can handle it.

I know some SPOILED people out there that don't work...and mooch off their parents for a living. Then they have the nerve to complain about how bad their life is. WHATEVER!!!

I watch that show Intervention about drug addicts. OH man that show pisses me off to no end. SPOILED addicts with co-dependent parents. And the addicts wine and complain about how their daddy didn't love them enough or how mommy didn't buy them the Barbie dream house as a kid and that's why they do drugs. Meanwhile a perfectly good kidney, liver, heart etc. is going to waste.
And then they end up on the transplant list with us (taking up space) who lost an organ to disease.

I am sorry...I got way off track..... That schedule you guys are running is rough. How long will you have to do that?? I hope you guys can get back into a normal schedule soon. Rushing around like that can be very draining....as you already know.
Stay Strong!!

[okarol]

The economy is improving (or so my hubby says... he is an economist!)
Try to plan something fun - I know it's hard with that schedule - but it would be great to have something to look forward to.
Sending HUGS your way. 

[willowtreewren]

Hi, BrightSky.

This is our schedule for this school year, until the end of May. I'm sure we can hold out. 

Thanks,

Aleta

[monrein]

 
I'm generally a very positive person too Aleta but I'd need to go into life-isn't-fair mode every now and again when I was on D.  Then being blue made it feel worse so I'd dust myself off and get back to myself.  Almost like poking around in the attic or basement but you don't want to stay too long in case you develop asthma from the dust so you haul yourself back into the brighter light.
I hope he finds his positive vibe again soon.  Love to you both.   

[paris]

Aleta, I have read your post several times and every time I try to answer, I am at a loss for the right words.  I think sometimes we just need to say how unfair life can be.  This isn't the way he planned your life together.  He is working an incredible amount of time (so are you!).  There isn't much time for either of you to just rest.  The financial part is where my biggest guilt comes from. And I am sure it ia huge worry of your husbands.  You are such a lovely person with a marvelous attitude and kind heart and we know you are under a lot of stress. We are here for both of you.   Sending calm, restful wishes your way   

[willowtreewren]

Thanks everyone.

Gail, I know what you mean about feeling blue just not helping. I like that attic/basement analogy! 

Paris, you are right. This isn't what we planned, but hey, we are still kicking.

Carl seems to be feeling better today. It's his birthday! And as he says, "getting old sucks, but it sure beats the alternative!" Since no celebrations off dialysis are at hand, he asked me to break open a package of really yummy cookies we have had in the pantry. I even ate one with him, holding it up and "clinking" it with him for cheers.

No swimming tonight, but that means I'm inside with him. All in all, a pretty good place to be!

This family is the best.

Aleta

[pamster42000]

Ok .....I tried posting a brilliant , answer to all your problems suggestions but I just found out if the red words are at top you have to post again, so there goes that. Those words of wisdom are gone forever.

Anyway I know what you are going through, no time to just take a breather. 2005 to 2007 our life was like that. Between dialysis, physical therapy, emergency room visits , Dr. appointments for Sarah and me working full time life was busy and stressful. (In 2006 caregivers were with Sarah when I was working or I would have been a basket case worrying about her).

All I can say is look on the bright side....Be thankful you have money saved to fall back on, some people don't have this option. Be glad your husband is able to work 10 hour days, he could be so tired that all he wants to do is lie in bed. Thank the Lord you have each other to lean on in this rough time and know in your heart times will get better.

Maybe for the meal during his dialysis sometimes you     can make it romantic: candle lite ( I figure the battery run ones would be best  ) flowers, soft music etc. Maybe this could be the time to relax.

Sarah and I also said, "life isn't fair", at times. Must be a universal dialysis patient saying.

[petey]

Aleta,
I know the feeling you get when you realize -- and say aloud -- that life isn't fair.  It really, really isn't.

My standard response at this point would be, "But it's not supposed to be fair...and look at all you do have...be grateful that dialysis is keeping Carl alive...find the positive."  But, I don't want to say that now.

Instead, I'll say, "Damn!  Damn the disease!  Damn the hands we were dealt!  Damn the lucky ones who don't have to live with all we have to live with!  Damn the insurance companies that are drowning us!  Damn the unfairness of it all!  Damn our fate!  Just damn! damn! damn!"

"Life isn't fair" has become a regular chant of mine.  I also often ask, "How much longer can we be expected to continue to live like this?"  Well, Marvin and I have been doing this for over 14 years, and, somehow, I'll find the strength to get up in the morning and do it some more.  Damn!

I know my post isn't helping you (it's not doing much for me, either).  Just know that you and Carl are not alone, know that there are others traveling a very similar path, know that you can come here to IHD and find others who understand.  And, I understand you.
  to us all...

[willowtreewren]

Thanks again, Pam and Petey!

We all have such diverse journeys, and it really helps to know that the journey isn't taken alone.

I really appreciate the hugs.

And back to you...

Aleta

[jbeany]

Any chance of switching to a 5 day a week schedule on your NxStage?  Then you could do Thursday and Sunday off.  Just a thought. . .

 

Ever hear the saying that if life were fair, Elvis would be alive and all the impersonators would be dead?

I have a sign up in what used to be my dialysis room.  "Thou shalt not whine."  Some weeks I do better at that than others.  Some weeks, I just don't read the sign.

Hang in there.

[Hanify]

Hey Aleta, we sympathise we really do.  Is there no chance of changing to a night system where you are?  I don't know how that all works, but it seems to me dialysis should only be allowed to be done at night when you're sleeping.  That way you've got your day free.  I have to say though, I don't know how I'd cope working that many hours!  It's your passion too obviously.  Thinking of you.

[Jean]

No, Aleta, life is not fair. If it was, Donald Trump would be my boyfriend. Just Kidding. I agree with Hanify, can't you do nocturnal D? You are such a wonderful and steady person, I never thought I would hear you complain. My husband is just like yours, always up, and I haven't seen him down in 12 years now. I hope you find some kind of solution for all of your problems, and working 10 hours a day is way too much, both for him and for you. Can you cut down there? Pllease work on a solution, so that we don't lose you and you can feel better. Prayers for you.

[willieandwinnie]

  Aleta. All I can say is I am so very sorry. We are still having problems and Len had his transplant almost 2 years ago. Breaks my heart when he says he was doing better on dialysis. One baby step forward and one day at a time is what I say everyday. I hope things begin to turn around for you. 

[cariad]

I'm so sorry, Aleta. No, that schedule is certainly not fair in the least.

I wish I had a solution for you. I hope you two can try to look to the future and picture yourselves in May saying to each other "Wow, how in the world did we pull THAT off?"

My husband and I have been struggling financially as well. He was out of work for a year in 2005/2006, and then was let go from a job in 2008 after we had relocated to accept it (lawsuit pending). I don't know how we managed it exactly, although it definitely involved dipping heavily into savings and borrowing against our house (which we finalized within a few months of the credit freeze). It is depressing to see your savings depleted, but you are doing what you have to do to survive, and that is so admirable. 

Glad to hear that Carl is feeling brighter. And  to him!

[willowtreewren]

I wish I had a solution for you. I hope you two can try to look to the future and picture yourselves in May saying to each other "Wow, how in the world did we pull THAT off?"

That sounds like the perfect scenario! 

I want to thank everyone again!

 

[Bajanne]

I totally understand and empathize.  Life really isn't fair!  But we have to live with it, right?  Hoping that you and your husband find strength in the midst of the unfair situations.