I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: cattlekid on October 16, 2012, 09:03:44 AM
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I need to vent….I am burned out and annoyed. I’ve been on dialysis since January of 2011 and on NxStage at home (short daily), since November of last year. I’ve been on the transplant list since July of 2011 and switched my waiting time to University of Wisconsin in July of this year.
I did the switch because it was supposed to be a slam-dunk to get a transplant in Wisconsin. The quoted waiting time for my blood type was 12-15 months. Well, I took 12 months with me and now I’ve accrued another three months. So where is my damn kidney? I know I shouldn’t be greedy, but I have a life to get back to living and the treadmill of full-time work and dialysis is just starting to wear on me uncontrollably. My relationship with my husband is suffering, I’m suffering, the house is suffering and there seems to be no end in sight.
I seem to have fallen in the abyss of just existing. I can’t go on disability or part time work because I need my full salary to pay our bills. There seems to be no resources to help as there would be if I were unable to work. Friends and family think I’m doing fine because I put on the brave face and I don’t burden them with my day to day needs.
I’m not sure where to turn…there just seems to be no hope, just an endless cycle.
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Cattlekid, be patient. I know it can get difficult at times but patient is a virtual. When I feel frustrated, I just take it slow and one step at a time and at the end of the day, I’m feeling better. Your name is on the list and the hospital is trying to find a prefect match for you. You don’t want to take a kidney that’s not a match. It can cause a lot of problems and eventually have to be removed. Just try to take it one day at a time and before you know it, the call will come. Try not to think about it because it will only drive you crazy and you will get frustrated all the time. The call will come just be patient.
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Sounds really frustrating. The problem is the call is so unexpected. It could be tomorrow or next week. For your sake I hope it is. Take a deep breath. If someone offers to help you, let them. Ask for help if you need it or even want it. People have compassion if you let them know you have problems. Take some time to rest and maybe pamper yourself a little. So what if the house is a little messy. Hang in there!
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I think that's where I'm struggling. No one is offering to help and I would feel very guilty if I were to say "hey, can you come clean my gutters so I can spend the afternoon knitting?"
Sounds really frustrating. The problem is the call is so unexpected. It could be tomorrow or next week. For your sake I hope it is. Take a deep breath. If someone offers to help you, let them. Ask for help if you need it or even want it. People have compassion if you let them know you have problems. Take some time to rest and maybe pamper yourself a little. So what if the house is a little messy. Hang in there!
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Maybe no one is offering to help because your "brave face" is too damn effective!
Maybe they truly don't realize how much you are struggling because no one has told them.
And maybe they don't offer to help because they know you have a husband who should be helping. :P
I doubt that you would be knitting if someone else was cleaning your gutters. I'd bet you'd be spending that freed up time doing the laundry or the shopping or the cooking or the cleaning or some other domestic chore.
In an ideal world, which friend or family member do you think would most likely and happy to help? And what exactly would you have that person do, which chore do you find the most difficult to cope with?
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MooseMom, as usual, I believe you have hit on the crux of the issue. When thinking about actually who I would like to have come and help, I can’t think of anyone that I would be comfortable asking.
My family is not close by (other than my grandmother, who I wouldn’t ask for anything). My friends all have full lives and families of their own and I really couldn’t live with myself to ask them to remove themselves from those responsibilities to assist with mine. DH’s family is also a no-go as they have a certain knack for making me feel inadequate for not being able to take care of my own home. The stress I would feel from having them in our home would be indescribable. The only way that I could have them assist is if I weren’t there, but then there is the very real possibility that I would come home to find most of my possessions in the garbage or replaced with flea market purchases from my FIL (not a joke, either, unfortunately).
In the past, when I’ve been feeling burned out with life, I’ve been able to schedule a visit back home to get some parent pampering. Unfortunately, dialysis has made this somewhat prohibitive. I do have 11 days off work coming at the end of November….maybe I should look into the travel idea just to get a change of scenery.
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a change is as good as a rest and I bet that a break away from home would be a great idea. :grouphug; :grouphug;
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Cattlekid, if you could have one person you could hire for a day to be at your disposal, what would you have them do? Would you want your home cleaned top to bottom? Would you want your yard cleaned and readied for winter? What one thing do you need most to have done?
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MM, I think what I need most is a day or two with a professional organizer (not the political kind, LOL). My problem is that if I get the house clean, it goes to pot in a matter of days due to lack of organization.
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You don't have to feel bad about asking your friends to take time away from their lives. Not every day. Ask one friend for an hour. Ask another friend to make a meal. Etc. i bet they would want to help if they knew you needed it. Once you start asking it gets easier.
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What is the possibility of going to part-time and then applying for disability? How close would that combined income be to your full-time salary? If it was relatively close (or maybe even out by tightening the proverbial belt a little), you'd have to work less without having to struggle overmuch.
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I just checked the income limits for social security disability and I would have to,cut my hours by 75% in order to qualify. Unfortunately, I need to keep my full salary as long as possible due to other financial obligations. If I could get DH a job that paid about $20 an hour for full time with insurance, I would be out in a heartbeat. Too bad those types of jobs are hard to come by nowadays. I will give him credit, he is going to try to pull some family strings at FedEx to see if he can get in there.
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Does that mean the he is un/under-employed while he is doing b******-all around the house to help you out?
:boxing;
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He works full time but can only get a $10 per hour job due to his lack of college degree. I don't hold this against him as he busted his ass to get the job that he has.
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As long as there is a little ass-busting going on.
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Cattlekid - as said, ask some friends for a couple hours of help. Tell them that the Dialysis sessions leave you a bit weak and you need some help to catch up with everyday things. Most folks won't mind bringing in supper or having a family project to clean up a yard. Another option for year work is the boy scouts. They are always looking for projects to get the boys involved in. Grumpy
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I don't have a college degree, and I've been making over $10/hr since 1999. I'm not good at classroom learning. I took a few classes at community college, and never went further then that. I started out working in hospitals and clinics in "support staff" (medical supplies, etc), then went into call center/cell phone work. I now work for a landline phone company in a IT-type job. It's a union job with excellent pay and benefits (for now). I know I am lucky and certainly not the norm, but it just bothers me whenever I read how those of us who don't have college degrees can't get a job that pays anything. The job I'm at now pays more than I ever thought I'd make. I'm making *more* than some people who have degrees! I was fired from my cell phone call center job over 5 years ago, but thanks to the union contract there, they paid me all my vacation hours, which was a huge help. I worked temp and contract jobs for a few months (which paid over $15 an hour) and ended up with the job I have now. My current job started out as tech support where I talked to customers about their phone, internet and tv services, and now I talk mainly to field techs who are out on trouble tickets. I had to take a couple of tests to get my job, and there was no interview. It honestly was the strangest way I've ever gotten a job, and turned out to be a huge blessing with my kidneys failing and having their insurance. I don't think I would have found this job if I didn't get fired. I like to think of that as a blessing, too, as strange as that sounds.
I'm not married, and doubt I ever will be. I understand how important your job is to you, because that is the one thing that has been important to me throughout this whole ordeal - I needed to keep my job. I was able to do in-center HD for 7 months, then received a live-donor kidney late last year. I am thankful that my job has been there for me throughout everything, and to have bosses that are willing to work with me schedule-wise so I can go to dr appts, etc. I don't know what kind of work your husband does, just keep in mind that it IS possible (or, it was 5+ years ago) to get a job that pays decently if you have work experience and no college degree. (I didn't start making over $10 until I started working in a call center)
KarenInWA