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I Hate Dialysis Message Board
Dialysis Discussion
Dialysis: Working while on Dialysis
For people who don't work
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Topic: For people who don't work (Read 9413 times)
Deanne
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For people who don't work
«
on:
April 21, 2008, 10:41:33 AM »
How do you get by, especially single people who don't have someone to support them financially? I'm not on dialysis yet, but it's something I've wondered about. If you don't work, how do you get enough funds to pay your mortgage, car payments, and all of life's other expenses?
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Deanne
1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
twirl
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Re: For people who don't work
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Reply #1 on:
April 21, 2008, 10:56:06 AM »
I'm a teacher and I hate not working. I am making almost as much as I did teaching on my disability, but in a few years it will decrease.
My husband is a coach and mows for extra money. My son is going to A&M and he better get more scholarship money or we are in a big hole. My son is a babe and he is nice and polite and that helps him make good tips at a Chinese restaurant. He works on Mon, Tues and Friday nights and one week he made $190.00 in tips. Some of his teachers eat there and they know all about us. It is hard and I think my husband will get another job this summer. He also does Saturday detention. I lucked out a few years ago, our insurance with the school district had an open policy where if you paid so much a month you got disability with no physical at all. I jumped at that... staying at home drives me crazy. Can you go on disability? I hope other people will post who can help you more and good luck. This is not an easy life. I think Rerun would have some good ideas for you.
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willieandwinnie
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Re: For people who don't work
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Reply #2 on:
April 21, 2008, 11:01:30 AM »
Deanne, good questions. Len retired from the Navy in 1985 (after 20 years) and we receive a monthly retirement check. He became critically ill 3/01 and I applied for he's Social Security disability. God, what a joke with those people, it took until 2003 to get it approved and then I had to get a State Senator involved because his application sat in the review boards basket for at least 6 months. I had my own business that I started in 1999 and when Len got sick, my partner ran it for me until I closed it permanently in 2004. Luckily, Len and I made good money before he got sick and we had put money aside, and believe me, we used every bit of it. I had a new 2000 4 Runner that I sold for peanuts, just to get rid of the monthly payment and we kept Len's pickup because it was 4 wheel drive and we needed it to get him to clinic in bad weather. We came close to losing our home because with all the medical bills and medications, and just everyday living it wasn't enough. When Social Security finally paid up, we got back pay to 2001 and now receive our monthly checks on time. It hasn't been easy and there are days I wondered how I managed to get by some months. For Christmas 2001, the company that Len worked for (so did I until I started my own business) took up a collection for us and went Christmas shopping (clothes and food) for us and gave us $2,000.00 in cash. I cried for hours over that one. When Len had his transplant in 9/07, this great group of people again took up a collection and paid my gas bill for 2 months of road running. Without them, I am not sure what I would've done.
You should apply for Social Security now if you have ESRD. Don't delay. If you need some help, let me know.
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"I know there's nothing to it, but I want to know what it is there's nothing to"
oleboy
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Re: For people who don't work
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Reply #3 on:
April 21, 2008, 12:05:17 PM »
I am 56 yoa now I started working when I was 12 yoa mowing yards and tilling gardens, I tried factory work and didn't like it at the age of 21 I became a Professional Firefighter/Paramedic done this for 22 years retired in 1995 on a Hazardous Duty retirement, draw a nice pension with Medical coverage for my wife and self until I pass and then it goes to her until her death. In 1996 I went to work at a large airport for the Airport Fire/EMS/Police worked there until Nov. 2007, When ESRD over took me. They provided me with a short term disability for 6 months and also have provided me with a long term disability coverage that will pay me until I get on SSI, they are doing all the paper work for my SSI but the local SSI office says I draw to much retirement through my pension so it looks like I will draw both my pension and draw long term disability until age 65.
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'hold fast your dreams for if dreams die life is a broken winged bird that connot fly.'
flip
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Re: For people who don't work
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Reply #4 on:
April 21, 2008, 12:48:47 PM »
I draw Social Security Disability and I sell books on Amazon. The combination gives me a decent income.
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That which does not kill me only makes me stronger - Neitzsche
Deanne
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Re: For people who don't work
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Reply #5 on:
April 22, 2008, 08:57:25 AM »
Thanks for the information, and Kathy thanks immensely with your offer to help with applying for Social Security! I'm fine for now. I get tired, but I'm able to work full-time with no real problems. I just wonder about the future sometimes.
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Deanne
1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
thegrammalady
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Re: For people who don't work
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Reply #6 on:
April 22, 2008, 09:14:29 AM »
i'm on social security disability but if it wasn't for my daughter i'd be living under a bridge. we will be downsizing this summer, moving from a 5 bedroom house to an apartment. this will give her a chance to spend some money on herself instead of everything going to living expenses. my parents paid off my car for me and i did a lot of looking till i found more reasonably priced auto insurance without sacrificing coverage. because i don't work and my "income" is less than a certain amount the state picks up my medicare premiums, and discounts my prescription coverage. i do contract work for a marketing research company doing mystery shops. i do paid on line surveys for points which can be turned into cash or gifts. i collect points all year and redeem them for christmas. with all that i'm still out of money by the middle of the month. but i can't really complain, i have a roof over my head and food in the cupboard, don't really need much else. then there's the deal of the century, i got a $40 pair of gap jeans last november for $3.50!!!!!!!!!!!!!! life is good
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twirl
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Re: For people who don't work
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Reply #7 on:
April 22, 2008, 09:26:12 AM »
thegrammalady - and you have cuite pie grandchildren
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Ambo
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Re: For people who don't work
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Reply #8 on:
April 22, 2008, 11:07:07 AM »
I haven't worked for a long while now. I am on disability and have been for a long while. Here in Canada, being on some form of social security, all of my meds are covered and if I need any supplies my social worker helps me get what I need. I live an extremely simple life and always seem to manage with what I've got. The Kidney Foundation here also entitles every dialysis patients $200 per year in case of emergency. I feel very fortunate to not have to deal with any financial woes. There is always someone willing to help you out, don't forget that.
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"To live with a chronic illness is not a limitation, but a special invitation to those of us who are willing to accept the challenge.'” -Shad Ireland
Treasure
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Dialysis Schmalysis!
Re: For people who don't work
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Reply #9 on:
April 22, 2008, 12:06:12 PM »
Right now I'm single, as my 2nd husband and I are separated. He does not pay spousal support, but he does pay my health insurance, thank Goddess.
I have been surviving on the child support that my 1st husband still sends, even though our son is now 19 years old and in college. I am also attending college, and max out the student loans every semester, so that I will have money to live on. This is going to be a problem when I graduate in either December or May 2009. I hope, hope, hope that I will be able to find a job I can work around dialysis when I graduate-- with health insurance. I feel a little guilty that I am not going to live long enough to pay back all of the student loans, hehehe. My plan is to ask on my deathbed if my loans can be forgiven so my sons won't have to pay them back. hehehe.
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You may worship me anytime you like... go ahead...bow down. Now! Ok, I'm hungry, go get the grapes. What? They're not chilled. You're useless! Ok...I'll forgive you...this time hehehe
Sunny
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Sunny
Re: For people who don't work
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Reply #10 on:
April 24, 2008, 02:55:43 PM »
I am on long-term disability through my old employer. However, this is not enough to live on by myself.
Check into disability benefits from your employer, and hopefully supplament your income in some way.
If you do have good disability benefits, then consider possible relocation to less expensive areas where
you might be able to survive on this disability income alone.
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Sunny, 49 year old female
pre-dialysis with GoodPastures
lruffner
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Re: For people who don't work
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Reply #11 on:
June 01, 2008, 06:03:55 AM »
I have been on LTD from my old employer since '01. They decided to get me rolling with the Social Security process, in order to reduce the amount they pay me if I was awarded. They told me that it may take up to 3 years to get approved, with all of the appeals and all.....well, that was not the case. We applied in Nov. '07 and it was approved right away in Feb. '08. I am not even ESRD yet, but I do have other physically limiting problems, but I didn't think I would get it that quickly. Now, SS pays so much and then the LTD pays the rest. This will continue with the LTD until I am 65, or no longer considered disabled.
I am still very puzzled about the S.S., considering that I didn't even have to appeal. They gave me a disability date of '06, but I wasn't diagnosed with kidney disease until mid '07, so I have no idea what exactly they are going on. I do have severe lumbar back problems and have had many painful procedures (2 weeks ago- 12 nerve block injections...go back in a week to have the nerves deadened for a year...did I mention that I am severely needle phobic and have major breakdowns over them! lol--thank God for Versid!!) I guess that is what they are looking at?? I also wonder why it takes so long for some and not for others? I know some people that are in very bad shape and they seriously struggle getting it...I think that is so wrong.
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Diagnosed w/ primary fsgs- June 2007
Getting ready to begin transplant work-up at IU and Jewish-9/08
"Live for Today"
flip
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Re: For people who don't work
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Reply #12 on:
June 01, 2008, 07:41:37 AM »
Mine was easy too. I guess Kentucky is a great state for disability.
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That which does not kill me only makes me stronger - Neitzsche
st789
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Re: For people who don't work
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Reply #13 on:
June 04, 2008, 07:18:48 AM »
Simple and Avoid unecessary purchasing.
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kellyt
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Re: For people who don't work
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Reply #14 on:
June 05, 2008, 12:27:03 PM »
I'm fortunate enough to be married to a man who will do anything to earn a living. He would work 2-3 jobs if he had too. In fact, when I met him he had 3 jobs. He's unbelievable!
Currently, we are self-employed. We own a security camera company. Our company is intentionally small (only 4 employees) and I work about 5 hrs a month from home doing invoicing, payroll, taxes, filing, etc. I often think about the situation I'd be in had I never met and married my husband. I would probably be living out of my car by now. Heck, with the cost of gas, I might not even have a car. I don't know where I'd be!
Like many others on this site, the cost of my monthly meds is high. I have zero energy on most days, so I have no idea how I'd make it through an 8 hrs work day, plus travel to and from. I can barely wake-up in the morning after 8-10 hrs "sleep". I put sleep in " " because I never sleep an entire night. Usually I can fall back to sleep, but recently I find myself up around 3 or 4 to use the restroom and then I'm up for good. It makes my days long and lazy.
I applaud those with ESRD that work full-time and have a family to take care of. I have NO idea how ya'll do it. I also applaud and pray for those who are struggling just to put food on their table and get required treatment and medication.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!
502Blues
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Re: For people who don't work
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Reply #15 on:
November 10, 2008, 01:50:00 PM »
I get Social security, i cant afford nothing I want but I have everything I need. Medicare part D pays for my medication, Section 8 pays most of my rent. I miss working terribly and cant wait till i get a transplant and go back to work. i would work if I felt that i could be dependable but theres always something that pops up and lands me in the hospital and plus I need an employer that offers decent medical coverage
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1991: kidney failure, undetermined cause
1991: right and left clavicle temporary catheters
1991: catheter for PD
1992:transplant
1998: June, Fistula placement
1998: july, back to dialysis,Hemo
1999: transplanted kidney removed
2001: parathyroidism
2006:march, fstula cant be fixed due to too many stents in damaged vessels caused by temp caths
2006: april, Pd catheter placement
PD would not drain properly
2006: finally after much pain and misery, AV Graft placed in abdomen, its working fine thank god
Quit dialysis sometime in 2009, had a change of heart and returned before I died
transferred waiting list time to another city/state and was transplanted almost right away August 9,2013
Wallyz
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Re: For people who don't work
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Reply #16 on:
November 10, 2008, 04:14:47 PM »
I jsut went back to work but before that it was disability, my wifes teaching salary, and budget budget budget.
And buy stuff at Garage sales and re-sell on craigslist. Only made 3 grand the year I was off, but that was noce to have.
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jbeany
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Cattitude
Re: For people who don't work
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Reply #17 on:
November 10, 2008, 09:57:48 PM »
Good question - right now, draining my savings, and waiting for the final papers on my divorce. Once that goes thru, I'll qualify for quite a bit of assistance - housing, food stamps, Medicaid - anything and everything I can apply for. SS disability does not make for a life of luxury, that's for sure. Get yourself to the local FIA and get some help.
I make and sell craft items, too. I'm never going to get rich, but I enjoy it, and the extra pocket money goes a long way when I stretch it.
I'm mostly just glad that my tastes in entertainment are well supplied by the local library! Free is my favorite price.
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.
TynyWonder
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Calvin
Re: For people who don't work
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Reply #18 on:
November 10, 2008, 11:13:52 PM »
I am getting my medical retirement from my last employer and just got my first check from SS. Yeah, the approval process for SS was easy for me as well. I applied in April & got my first check in October!!!!! I was told by my social worker that she had never known anyone with ESRD to not get approved for SS.
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Diagnosed with ESRD-November 2006
I have had 2 fistuals-neither one worked
I have had 2 grafts the last one finally "took"
I had 3 different catheters from Nov. 06 - Dec. 08
Got on the transplant list - Halloween Day 2008
You can easily judge the character of others by how they treat those who they think can do nothing for them. I BELIEVE THIS TO BE SOOOOO TRUE!
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