Okay enough is enough

[woodsman]

As of last tuesday i am no longer working. I simply could not do it any longer, i was so tired with the 10-12 hrs days and the 2.5 hr commute i had to make a decision to stop working. With dialysis being 20 miles away then trying to drive to work just became to much and i was to tired to continue. I have not benn off work in 40 years and i am almost ashamed doing so. I want to work but i cannot do it i was so tired and found myself falling asleep at the wheel and at work. When it came time to go to work i simply had nothing left and was miseribale trying to do it. I am going to file for SSDI and see what happens thenmaybe i can get something close to home part time. Did i do the right thing>>>>??//

[cariad]

Did you do the right thing?! Woodsman, absolutely! This schedule sounds dangerous even on a totally healthy person, what with the risk of falling asleep at the wheel or something. Add in dialysis, and I think it was time to reassess your plan.

It sounds like a really rough transition, but now could be the right time to give yourself a little bit of breathing room and decide where you go from here. Definitely seek out part-time work, volunteer opportunities, retraining/schooling that sounds interesting. This does not have to be the end of your work life, and there is certainly no shame in needing a bit of help. You paid into the system for 40 years, and if the system can help you now, I know that you are exactly the sort of person that taxpayers want to help.

Good luck. And I'm so sorry that you are going through this. 

[Rerun]

Yes you did the right thing.  I know it is hard to give up your security, the life you have only ever known.  But, you will feel better and be able to eat right and sleep and have more energy.  With disability you can work part time.  But, wait until you get approved.  Usually dialysis patients are approved quickly.  Welcome to the club of not working (slackers).  But, now I feel good enough to volunteer and help the people around me. 

You did the right thing.  And if you get a transplant you can go back to work.   

[sullidog]

I quit working for a while then I went down to part time and that works for me. Same job, too!

[jbeany]

We all do what we have to, even when we don't want to admit we need to.  I hated quitting work, and my too-kind bosses would not have fired me, but I was the one balancing their books, and I knew they couldn't afford to pay me when I wasn't being productive!

Maybe you'll be able to find something closer to home in the end - even if it is only part time.

[MooseMom]

Oh woodsman, your life has utterly and completely changed in such a very short time, hasn't it.  It must feel like the world had turned on its axis.  I'm surprised you are still sane enough to put even two words together that make any sense!  But I know you are sane because yes, you made the right decision...you know you did.  Just because it was a difficult decision doesn't mean it wasn't the right one.  It's just not fair that this was forced upon you, and it's not fair that more often than not, we seem to be mere playthings of the Fates.  But I seriously do not like the idea of you falling asleep at the wheel following a gruelling day at work after a gruelling day at dialysis.  THAT's not a good decision!

I always hesitate to suggest volunteering, but since other posters have done just that, I will, too.  Once you recover from all of these months on such a tough schedule, hopefully you will get some energy back and can find something fulfilling and interesting to do with your time.  So many people are having a rough time of things (I know you can sympathize with that!) and would really appreciate some small assistance.  And frankly, looking after others is a great way to keep from thinking too much about our own problems.

Good luck, and do keep us posted on how things are going for you.

[Ang]

absolutely guaranteed you did the right think

[willowtreewren]

 

Yes, yes, yes. Try not to second guess yourself, Woodsman. You were operating on super-human level even for a person NOT on dialysis.

Move forward from here and maybe something less tiring, closer to home will turn up. I'm hoping so.

Aleta

[Brightsky69]

i was so tired with the 10-12 hrs days and the 2.5 hr commute i had to make a decision to stop working. With dialysis being 20 miles away then trying to drive to work just became to much and i was to tired to continue.

Whew !!  I was worn out just reading this part. I think a healthy person would have a hard time keeping that schedule. I had a desk job with a 15/30 minute commute and I was ready to go out on disability. But then I got the "call" before all the paperwork went thru. 
Maybe you'll have the same luck! 
Take it easy...SSI was created for just this reason. 

[tbarrett2533]

Umm you sure did do the right thing!!! 

I did the same thing.... I worked my entire adult life 3 sometimes 4 jobs working up to 120 hours a week, then this crap happend to me, I went down to 40 hours, one job, still way to tired so I went down to 30, then lastly 20 and at that point I was not making any money (after driving back and forth) not to mention I did not even have time to go grocery shopping (even at 20 hours a week) (with In-center Hemo)
 I did the math and I would make more money if I was not working, so I took myself out..... and let me tell ya, if someone has got any problems b/c you are not working.... tell em, you will strap them down to a chair, shove 15 gauge needles in their arm, and tell them not to  move for the next 4 hours then deprive them of food and drink (b/c that's what it feels like)
and if that don't do it, tell them that your full-time job is staying alive now!!

Andddddddd every person is different on dialysis, some people have jobs that are easier, while others (like myself) have very demanding and stressful jobs so, some people can work on dialysis while others can not!!!



Enjoy what time you have left on this planet while you still can!!!! so use this time (like I am) to take small trips, relax & even find some new hobbies (which I never use to have time to do, but now I do ) 

[Brightsky69]

I think the stress about going on disibility come from having a strong work ethic. That is pretty much how I felt. I thought...I am not sick enought to go out on disibility. Whew...towards the end I was SO ready to go out on disibility. I was thinking "something has got to give...I can't go on like this."

[woodsman]

I went o dialysis this morning and all went well with the needles, then th social worker came in and all hell broke loose. She began telling us what we need to do and i watched my wife come apart at the seams, she began to cry like i have never seen her do. She is stronger than most but after hearing all the things we must do it became to much for her to deal with. As it is now we stand to loose everything i have worked  40+ years for. Co-pays, cobra<< holy hell Medicaid D part B parts this VA benifits, i sat ther sick to my stomach and could not even comfort my wife being stuck in that damm chair..........

[MooseMom]

I went o dialysis this morning and all went well with the needles, then th social worker came in and all hell broke loose. She began telling us what we need to do and i watched my wife come apart at the seams, she began to cry like i have never seen her do. She is stronger than most but after hearing all the things we must do it became to much for her to deal with. As it is now we stand to loose everything i have worked  40+ years for. Co-pays, cobra<< holy hell Medicaid D part B parts this VA benifits, i sat ther sick to my stomach and could not even comfort my wife being stuck in that damm chair..........

I really don't know anything about the red tape that is required, but I'd just bet that it is truly overwhelming.  I think it is rather dispicable for the SW to choose this particular time to start yammering on about this topic; it's so complicated, and to try to absorb it all while dialyziing just doesn't seem doable.  Do you think that perhaps you and your wife could schedule an appt with the SW while you're NOT dialyzing to go over this stuff?  I think you and your wife might both be in a better frame of mind.

[brandi1leigh]

I almost had a nervous breakdown when I finally gave in and stopped working, but soon after I also felt like a huge weight had lifted off my shoulders. I was exhausted and never felt like I was giving my job (teaching) all that it deserved. I was giving it 150% but my 150% wasn't enough because I always felt so horrible.

The paperwork was overwhelming. Tons of deadlines and while my social worker is very nice, she isn't always on the ball. Please remember that your wife wasn't just upset by the paperwork. More than likely it was just a build up of all the worry and stress of the illness. Every one needs a good cry every once in awhile to relieve the pressure. I second the idea of scheduling a time to talk to the social worker outside of your dialysis appointment.

Hugs to you. The not working gets easier. The paperwork slows down, but it's still no fun. Remember we all support you!

[Brightsky69]

She began telling us what we need to do and i watched my wife come apart at the seams, she began to cry like i have never seen her do.

I suspect that she may also fear the idea that she could possibly lose you. It has got to be scary to live with the fact that a loved one, spouse or child has a major medical issue.

[boswife]

yes you did the right thing! absolutly!!! no doubt!!!!!!  Proud of you as i was for my hubby!!!!  Doesnt make it easier until your ready to accept it fully, and embrace it, but it is time for you to spend some quality time around the home front, get adjusted, and then who knows whats next, but i hope you will come to be happy with your decission. 

and as for your other part of post.... Im so sorry for your hurt for your wife (and sorry she had to feel so horrably hurt as well..i've surely been there  )  I dont know what your home situation is like, and nxStage is quite a commitment, but................  In time, once your more comfortable with dialysis itself, mabie it will be something to think about and use that Dialysis time as quality time with wife and fam instead of apart time.  Unlike some who do it, i think it's huge........ but a good huge once you adapt        Lots feel it has given them their life back health wise so it's just a thought. 

sending hugs for both of you, and prayers for a bright future... 

[tbarrett2533]

I went o dialysis this morning and all went well with the needles, then th social worker came in and all hell broke loose. She began telling us what we need to do and i watched my wife come apart at the seams, she began to cry like i have never seen her do. She is stronger than most but after hearing all the things we must do it became to much for her to deal with. As it is now we stand to loose everything i have worked  40+ years for. Co-pays, cobra<< holy hell Medicaid D part B parts this VA benifits, i sat ther sick to my stomach and could not even comfort my wife being stuck in that damm chair..........

I felt the same way your wife is feeling with the exception that I was completely alone..... never been married, no kids, and no family that cared (now I have a GREAT boyfriend)
Please take some advice from me and ADVOCATE for yourself....No one is going to stand up for you, but you!!!!!
I found out that the county I live in can and is paying my medicare premium, they also pay my private health ins premium b/c I qualified for a special program.... I do not know what state you live in, but you too should do exactly what I did and that was RESEARCH and I even called my state assembly man and asked for help........(and got results within days)
Please stay strong!!!