Do you work?

[kitkatz]

Someone recently asked about if people were working, so I thought maybe replying would bump this thread up.    Is it all right to do it?

[RichardMEL]

I work well.. supposedly 0.8/FT, so approx 30 hours a week. I would guestimate the reality is more like 26-27 but I have a very understanding boss.

Actually I was pretty lucky in this regard. I work in IT and back in 2003 I had been working full time for an insurance company. I knew this couldn't go in if/when I would have to start on Dialysis, but so far I had staved it off, and was able to work OK. I had informed my boss though at what MIGHT have to happen (I believe in being upfront about such things - if you were the boss and you didn't know then your worker just turned up one day and said "hey boss, I have to do this dialysis thing 3x. a week and I won't be able to work for those days or afternoons... I'd be pretty pissed!" - luckily that didn't come to pass when that contract finally was up).

Well I was off work for a few months looking for new work, but keeping in mind my medical situation and I really didn't want to go back into a full time stressful thing like I had in Insurance.

Well, just over 3 years ago the best opportunity appeared as if out of nowhere. A half time (0.5) job at an arts institution here (ie: low stress).. I applied and amazingly got the job (aparently someone else had first been offered it but pulled out). Well, this was like a godsend.. I knew that I could work half hours and fit in dialysis (but again, I informed my new boss anyway - so they would understand if I had to change my hours or days I was in or something). Well, after a year or so they said they loved my work so much and I was doing good stuff (nice ego boost!) they upped my hours to 0.8 (they offered FT but I declined it) and a nice pay rise.

Since July when I finally had to start dialysis they have been totally supportive. They said "look, your health comes first. if you can't make it in some day it's OK just let us know. If you need time off.. let us know" etc... and so far they have been very understanding. As it is I work Monday, Wed, Friday and I come in for a couple of hours before dialysis on Tuesday and Thurs mornings.

I believe I am very lucky to have found such an accomidating position and understanding people to work for!

The best thing for me is being able to do something useful. I know some people can't or stop work when they go on dialysis but if I had nothing to do on the days "off" (from dialysis) then I'd go crazy (as well as find it hard to feed myself!). This way I can work in a field doing things I know how to do, and be productive, and earn money and still do dialysis.

Who knows what will happen with my health in the future and how it affects things, but I am pretty confident that I would find support from my employer... I am sure if I turned around and said "look, I need to go back to 0.5" they would be cool with that and perhaps employ someone else for the other 0.5, or work something else out.

[Rerun]

That is great Richard.  I admire you for sticking it out.  I thought I would miss my job but I don't.  I keep busy and feel a lot better because I can get my rest.  If not at night (like a normal human being) then in the morning or afternoon.  I love that part.

[AlasdairUK]

If I did not work full time, I think I would be very bored. Although you have the extra time you can not spend it with most people as they are at work. I'm sure I would do something to fill the time, but I would not feel as productive.

Alasdair.

[angieskidney]

I no longer work part-time but am back to work now for a few hours per week on non-dialysis days and I keep busy all the other times with my site and stuff around home and with friends and family and my fiance. I thought I'd be bored but maybe the reason I don't miss work so much is the job I have I don't really feel like I accomplish much or have any chance to climb any ladders. I think I accomplish more at home 

[Zach]

My career started after I began hemodialysis.  It's a combination of perseverance and luck.
 

[paris]

Work is the reason for me to get up in the morning.  I am exhausted at the end of the day, but I need to talk to others and be a part of the non-kidney failure world.

[Treasure]

Greetings... I am not working now... I have had difficulty finding a job in my area, since I graduated from college 6 years  ago (after 16 years of mostly being a stay-at-home mom of 4).  The two or three times I have been able to find a job, I have lost them when I have  been hospitalized-- because I was on new-hire probation and none of my employers have been supportive.  I did have a home business for a while, but I was getting too weak to haul my display around...but I did make some money from managing the team I led. My team, though, was from coast-to-coast and they really needed face time wtih me to keep things going-- and my nephrologist just did not understand that.

I really have to find a job within the next two months. I have separated from my husband and have lost the income I shared with him (thankfully, he pays my health insurance since I don't have Medicare). In March, I will lose my child support when my son  turns 18. And I only have 4-5 months of disability left. I'm going to be um...futrched up!

I am returning to school in January and I'm sure that when I finish my Master's and move to an area where there are jobs, I'll be ok...but these next couple of years are going to be dicey!

[kitkatz]

It sounds like you are having a " hang on to your ass you are going for a ride" time of it.  Good luck as you go back to school.

[angieskidney]

I really have to find a job within the next two months. I have separated from my husband and have lost the income I shared with him (thankfully, he pays my health insurance since I don't have Medicare). In March, I will lose my child support when my son  turns 18. And I only have 4-5 months of disability left. I'm going to be um...futrched up!

I am returning to school in January and I'm sure that when I finish my Master's and move to an area where there are jobs, I'll be ok...but these next couple of years are going to be dicey!

Wow I wish you the best of luck! Wow..

[angela515]

Greetings... I am not working now... I have had difficulty finding a job in my area, since I graduated from college 6 years  ago (after 16 years of mostly being a stay-at-home mom of 4).  The two or three times I have been able to find a job, I have lost them when I have  been hospitalized-- because I was on new-hire probation and none of my employers have been supportive.  I did have a home business for a while, but I was getting too weak to haul my display around...but I did make some money from managing the team I led. My team, though, was from coast-to-coast and they really needed face time wtih me to keep things going-- and my nephrologist just did not understand that.

I really have to find a job within the next two months. I have separated from my husband and have lost the income I shared with him (thankfully, he pays my health insurance since I don't have Medicare). In March, I will lose my child support when my son  turns 18. And I only have 4-5 months of disability left. I'm going to be um...futrched up!

I am returning to school in January and I'm sure that when I finish my Master's and move to an area where there are jobs, I'll be ok...but these next couple of years are going to be dicey!

I wish you the best of luck and hopefully everything will work out for you. I am thankful everyday for my parents being around to help me out with my 2 children and letting us stay with them until I get back on my feet... I hope you have some kind of support system and someone to help you through this hun. 

[goofynina]

Hey Treasure,   Just wanted to wish you luck on all that is going on in your life right now.  Keep your head up girlfriend, something good ALWAYS comes out something bad,  take care of yourself and remember we are always here for you 

[Zach]

The ESRD Network in your region may be able to offer advice about working and being on dialysis.

Responsibilities of ESRD Network Organizations include:
Encouraging the participation of patients, providers of services, and ESRD facilities in vocational rehabilitation programs.

http://www.esrdnetworks.org/

[Dan.Larrabee]

I posted here, because if found It very helpful and it may be as well for all the other new IHDers. After the post, it will show up in your not read or new post section.

I do work and have not missed a day. I found it very hard while I was in center, but now that I am home I sometimes work while I am on the machine and go in after I am done. I know that I am a lucky one and it is very hard, but as I own my own business and I would not have it any other way. I do not think I could have the drive to go in if I was “working for the man”. I hope I am not just killing myself by working.

[RichardMEL]

I find work one of the best things to be able to do. I know that sounds weird but for me it takes my mind OFF dialysis and focuses it on (mostly) positive/productive stuff. Also I find it very social. When I go to work our area go have a morning coffee at 10am and we chat and all get on pretty well. That is pretty good and really allows me to live more of a normal life. Plus of course it pays the bills! I just feel it is important to have more in life than just dialysis and work is one of those things (I'm working on the girlfrend part hehe). I feel really greatful that I have the ability to work every day of the week (on D days I just work in the morning) and have a VERY supportive boss who i sunderstanding of the issues and is cool if I need to take time for specialist appointments or whatever so that really makes it helpful for me to know I have that suppor. I think if I didn't work in such a good workplace with cool co-workers who are supportive and understanding but also fun I may not do so well but for now I'm doing OK.

Having said that I have tomorrow (Monday) off to stay home for some building works... not minding that situation one little bit

[Beth35]

The first time I was on dialysis (for five years) I was young and just working at Kmart.  (Don't laugh and no jokes about blue light specials )  I was on my feet all day in the clothing section and having to move around all types of heavy clothing racks and stuff.  I also had to lift boxes and bring new items onto the sales floor.  It was just too much for me.  For ME, the day of dialsysis, I was feeling bad because I was needing a treatment.  The fluid had built up and I had rapid heartbeat and I was tired.  Then the day after it was so hard to get up because my pressure would always be low and I would be short of breath.  It would take me a while on that day to feel better.

So while on dialysis I collected SSI and began taking college courses.  I ended up getting my degree in teaching during my five year dialysis period.

When I got my transplant, I graduated and got my first job right away.

Now, I'm not in such a good situation with my job.  I have been there for nine years.  They are NOT understanding about being sick.  In fact due to my low immune system one year I missed more than the ten sick days I am allotted.  They actually wrote me up and threatened to not give me a raise the next year. 

I fought it and got a doctors note so they told me they would not hold back my raise but they would not take out the write up out of my file so there it sits. 

On May 13th, I am meeting with the union lawyer about my options when I begin dialysis.  He told me that my school district did NOT have to accomodate my workiing hours.  So I don't know what I will do.  We are trying to figure that out now.  If I last another year without needing dialysis I will be eligable for disabiliity retirement.  But I just don't think that is going to happen as I'm feeling quite bad right now.

I commute forty mintues to work and 40 minutes home.  I work with six year olds all day which is exhausting for even healthy people and then I have my two little ones here at home.  I don't think I could do it.  Maybe a few hours a week but as I said, my lawyer is saying the do not have to accomodate me.

[willowtreewren]

I'm sorry to hear about your situation, Beth. We work with children, too, and it CAN be quite wearing.

On the other hand, I agree will Dan and Richard. We are fortunate because we are doing NxStage at home and have some flexibility with our schedule. That allows us to fit dialysis around work and work around dialysis. But I think we would both go a bit crazy if we didn't have work to look forward to.

I'm curious, though, about your working with children with your transplant. Our neph has advised that my husband should NOT be in the classroom after getting a transplant. Hmmm.

We were going to have him move more out of the classroom and more into administration if/when he got a transplant. There always seems to be much to consider!

Aleta

[twirl]

Beth
I taught 7-12th graders with learning problems -- had the job for 10 years and was with the district a total of 15 years
I left an hour early on MWF to go to dialysis
I had no conference period and I got there an hour early 7am
some teachers were upset b/c I left early ---- on D days -- but I got home after 9:30 after four hours of dialysis
I went on disability - one year the district had a no checkup program for 90.00 a month -- smartest thing I ever did
after 5  years on that I have to get my teacher's disability -
but the worst thing is that I miss teaching
I had a way of getting along with troubled students and they have not had the same teacher in that job two years in order since I left
it was a difficult job -
but I was born for it -
what does around come around
and one day those teacher's jealous of me will be sick or someone they love will be sick and be treated like I was -
I used to take teacher's papers to grade to help pass the time a dialysis and I enjoyed it-
I did extra duty to make up for my early time on MWF -
I am depressed without teaching
but I stayed home ten years to raise my three children
and that was fun but we were poor-
my husband is coach and he took extra jobs -
Missy was a baby and had health problems and I was needed at home
she is now grown and you can not tell anything was ever wrong with her
you have two small children at home and if you can get disability and make some money from that
- it may be the best thing
I am grateful that I got on dialysis when my youngest child was in 10th grade -
he just started driving
my children were involved in everything and it would have been unreal on dialysis and trying to go to all there events and programs
see about disability
it is exhausting to be healthy and teach and come home to your "second job"
I substituted for an elementary teacher one day and she left me money to get a coke out of the machine-
I laughed and said to myself that I would not need a coke -- I HAVE TAUGHT HIGH SCHOOL - ha ha
- it was first graders and by the end of the day I needed something stronger than a coke ---
you do what you have to do
and this is an emotionally and physically draining life
cheryl

[twirl]

 
one member pm'ed me that I tend to ramble on 
I hope that member does not read this   
oh Hello, so what --- don't like it; don't read it 

[willowtreewren]

What you needed after subbing first graders was a shot of HARD liquor!!! 

And rambling is good. That's how we get to know one another! People who don't want to read rambles can move to another post! It's like the off button on the TV. Self censor. 

Aleta

[twirl]

thank you
and you are so correct about the hard liquor 

teaching young students is so much more work than teaching high school or 7th and up

how many times can one group of students have to pee pee
and you have to walk them every place they go
and open the packets of things at lunch
and could you please stop picking your nose --- no wait, that was high school

[Beth35]

Thanks Twirl (and everyone else) for your sharing your stories.  It helps to hear from others in the same boat.

Honestly, I would enjoy being able to just be on disability right now.  I mean, I wouldn't ENJOY it, I'd rather be healthy and not have to worry about any of this.  But my job is so hard right now and it will only get harder on dialysis and I would love to be home for my kids when they get home from school and also be able to actually rest while they are AT school when I'm not having treatments.

I honestly get very little sleep.  My kids get up every day around six in the morning - even Saturdays and Sundays.  So for me, I would be able to be home for my kids more and get to rest which is HUGE.  I would still keep in touch with my friends and if I really needed something to do, I could start taking online courses for my Masters degree.

I'm just worried about my employer dropping my insurance and then also losing my tenure which has helped me keep my job throughout being sick.

[kitkatz]

Often when I am done with a day at the Middle School, I need a shot of something a little stronger than a diet Coke.  I do not get one, but often substitute chocolate for it.

[willowtreewren]

You can make it through  whole day with middle school students without chocolate?!?

we keep a hidden stash of Dove Dark in the office. Teachers steal in there for a fix throughout the day. When they go back in the classrooms there is always at least one kid who says, "I smell chocolate!" 

Can't get anything past them!

Aleta

[Hanify]

I have been so lucky with my work.  I was already part time (music teacher) and my school has been so supportive.  I could come and go as I pleased pretty much - if I felt too tired there would be no choir/guitar whatever that day.  Last year I was quite sick, and I just did 2 1/2 hours per week.  This year I'm doing 4 hours per week - very exciting.  I love my work, and we have a very social school.  The principal always makes sure some of my hours are on a Friday afternoon - so I can stay for drinks!!  No that I can drink much, but it's the socialising that counts.