Can Someone Help Me With This?

[Beth35]

A little review:  I am in stage three renal failure again.   My transplanted kidney is failing, and I was told I would need to start dialysis soon.  I am feeling badly right now (headaches, funny taste in my mouth, SO tired all of the time) so I'm going to have my labs done this week to find out what is going on.

My main concern right now is how the hell I'm going to do this.  I have been teaching at the same school for nine years.  I know for a fact that I won't be able to work and go to dialysis.  Maybe part time - Maybe.  But they are not going to offer me a part time teaching job. 

When I was on disability the first time I was on dialysis, I had only been working at Kmart while going back to school.  Shortly after my transplant I did my student teaching and got a job.  So there was no gap in my work history.

If I go on disability for a few years, do they still hold my job for me?  How does that work?  If not, do you think I have a shot of getting a job after my next transplant?  What if I can't get a job? 

I spoke to someone from my teacher's union tonight and I actually feel worse than I did before I spoke to her.  She seems to think they can force me to resign.  How is that possible?  Are we not protected under American's with Disabilities Act?  I just don't understand it all.  And this time around I have more to lose.  I have a house and two children.  The first time I was just living at home and had nothing to lose.  I'm feeling really insecure and scared right now.

Any teacher's out there go on disability?  What happened with your position?  Any help would be appreciated. 

[kitkatz]

First you are covered by the ADA in your job.  I have been on dialysis for ten years and I am still teaching special education full time at a public middle school. I can speak to the job.

1st what would it take to keep you in your position? An aide? More breaks? Longer lunch?  You can ask for modifications to your job if you feel you need them.

Have you looked into a shared contract with another teacher in your district? This is where you work half the week the other teacher works the rest of the week. You plan together .

[Beth35]

What would keep me working is the sheer number of hours.  I am super tired now and I'm not stage five yet.  Not that I know of anyway.  I guess we'll find out soon.

I commute 40 minutes to school.  I get up at 5:30 get myself and the kids ready, drop them off at school and drive to my school.  By this time I am already tired.  Then I teach six year olds all day and get even further tired.  If I had to do dialysis I would have to travel home 40 minutes, get the kids from school, bring them home and pay a sitter (not sure where that money would come from) and then off to dialysis for four hours.  Get home around 9 or 10?  I just can't see myself being able to do that.  Besides the fact that I would never see my kids, I don't think I could physically get it all done.

This is without cooking, cleaning, mowing the grass, sports for my children or any of that stuff.

I looked into nocturnal dialysis and I would love that but I do not live with anyone besides my two little kids and my whole family lives an hour and a half away from me.

IF I could work half day, that may be easier but we don't have half day positions.  They would never allow me to only teach half the day or half of the week and share it with another teacher.  I teach in a district where they move you to a different grade level if you become pregnant.

[jbeany]

What about PD instead of hemo?  That might be easier to manage - you could do it at night after the kids are in bed, plus you don't need a partner for home training on that the way you do for home hemo.

[Beth35]

PD is not something I could do.  I've thought about it, but I can't.

[Beth35]

I just thought of something else too.  If I go on disability I will lose my insurance through my job eventually.  I will then be covered by medicare?  But what will happen to my children?  I have insurance for them through my employer.  Would they be uninsured?  I could never let that happen.  I want to just go home and cry myself to sleep thinking about this.

[MandaMe1986]

I am sure once you are on disability if you don't get medicare for your children then they can get medicaid.  Have you looked into anyof that yet?  There are lots of diffrent programs out there for children without health care.  What state do you live in?

[twirl]

I know from my past -- they can not make you retire or resign but they can make you feel worthless-
I was at this school for 10 years and I did dialysis for two years from 4:00 to about 9:00 - by the time I got home -- I started school at 7am - an hour early because I left school an hour early on MWF -
I did teaching on the high school side for that hour --- some teachers would tell me that they wished they could go to dialysis to be able to leave early -- I was too professional to tell them to F-off --
my last year I was to teach 7th grade Eng, 8th grade reading, 7th grade Texas history and 8th grade American history and I had 40 students in a case manager's list that I had to do tons of paper work on-- my meeting were all going to be scheduled for Tues and Thurs after school----- and from 7am until the start of junior high I was to teach a high school science class --- I had no conference period and 22 minutes for lunch.... I just could not handle that --- and to no one surprise --- that job is opened every year --- some teachers do not last a year in it --- I would still be there if they worked with me some -
I got disability and bring home more money than I did teaching --- of course I do not have all the savings and money into different things as I did then--- I was lucky and one year they offered disability with no medical tests -- so I jumped at it and it cost me 90.00 a check but it was well worth it.....
there are some laws they have to follow
I want to go back to teaching
this staying at home sucks
I miss the students and my friends - it is like I lost a support group
maybe you should do dialysis on T days and Saturdays
- but I really think you need two days off ---- that go with your work schedule
please think long and hard before you stop teaching -
Kitkatz is a teacher on dialysis who still teaches and we have other teachers on this website who still teach
they are the lucky ones
good luck

[Beth35]

Do you guys have young children?  That is the biggest issue here.  I am not married.  I adopted my children as a single person.  They are very young and have a lot of energy.  Not only would I not see them if I did dialysis after working all day, I would be WAY too tired.  I am tired now and really wish I could stop teaching now.  I mean, to be very honest I'm struggling big time with being a mom and a teacher and having to do all of the other little things that it takes to be a home owner.  Many times when I get home I'm too tired to cook or clean or any of that.  My energy is zapped.  I know I could never do teaching full time.  See, my district would never allow me to go home half day or any of that because they feel it would disrupt the students. 

When I stopped working the first time I didn't lose any of my friends.  I was pretty happy not having to work and just focusing on my health and resting when I needed to.  Of course I was a young person living at home with my parents.  I didn't have to worry about my house or any children or anything.

[Sunny]

The American Disabilities Act requires that they accomodate your disability. This applies to the Public School system and I don't know how it applies to the Private School system. This also applies to a fully contracted teacher.I was a teacher teaching 4th grade when I became disabled with kidney disease. I was on total disabiity for 6 mths. When I came back to work, they found me a 1/2 time job as a reading specialist because they HAD to provide me with some sort of job once I was released from total disability to partial disability. Then I demanded to have my classroom back and they were forced to provide me with a shared teaching contract in which I taught in the mornings and another teacher taught in the afternoons. They had no choice in this. The American with Disabilites Act protected me and my teacher's Union protected me. They would have been required to allow me to work in this manner as long as it was needed. The sad fact, however, is that I couldn't even work part time and had to go back on total disability. When you are on total disability the school district has to find a position for you if you come back for limited period of time only (I think it was 2 years). After this, and when you are considered on long-term disability, the school district is no longer required to hold a place for you. Should I ever decide to go back to work for the school district, I would have to re-apply for a postion just like a new hire. One benefit is that I am collecting long-term disability benefits equal to 80% of my salary. The downside is that I no longer have health insurance with them and get it from my husband's work. I also would be treated like a new hire. If any of these circumstances apply to you, I would say,"Don't quit your day job" if at all possible. Insist on a shared contract.

[Beth35]

Now are you a reading specialist?  I would love to be a reading specialist.  I do not have the degree though.  I will check into what you are saying.  I put in a call to our NJEA uniserv Lawyer and am awaiting a call back.  I too think it would be really hard to even work part time but I am willing to give it a try if I have to. 

If I worked for just like four hours a day, would I still get to keep my insurance with them?  That would be great.  Again, we are talking about a district who moves pregnant teachers to subs because they don't want the students "disrupted" by a teacher going on maternity leave.  I have already had a parent say to my coteacher when I was in the hospital for two days, "Is Miss M EVER going to be here!"   

This is all so stressful.  And stress is not good for me.  But THANK YOU so MUCH for giving me that information.  The more I think about it, the more I think I could pull it off.  That would take the added stress of insurance and job security off of me.  I will ask the union lawyer about it when I speak to him!

[Stacy Without An E]

I understand what you're going through.  Each year it gets harder and harder to work full time as Dialysis slowly kills the remaining healthy parts of my body.

Dialysis is a sneaky creature because it preys on you and takes your life in small pieces until your realize an entire portion of your soul is gone.

I would take some time for yourself and then make a deciision: am I going to fight this to keep a job that I absoutely love or will Dialysis steal this important part of my life away?

I know its not easy, but I know myself.  If I didn't have a job to go to everyday I'd slowly become withdrawn and stay in bed all day, only rising for meals and showers.

And I will absolutely not allow Dialysis to win.

All my strength to you for a continued full life regardless of Dialysis.

[Beth35]

Thanks Stacy for you advice.  I think the hardest parts of dialysis for me was after the treatments where I would feel totally washed out, short of breath, tired, low blood pressure, and then the horrible cramps would come in my legs in the night.  Uh, one time I had a cramp so bad I was just screaming in pain and my mom had to come and help me straighten out my legs.

Then the next hardest part was having to get up the next day.  I would feel those same things for pretty much the first half of the day.   So having to get up early and go to work even for a few hours will be tough but I think I'd like to try if I could just for that peace of mind of my job security.

I do enjoy my job but I honestly wouldn't mind being on total disability.  I would be able to rest and feel better and be home for my kids.  It's the just the money worries and the worrying about not being able to get a job again and so on.  Well, you guys know what I mean.

I think the thing that scares me the most is that I know that I have to take care of two other people this time around.  And I'm worried about that. 

[pelagia]

I just thought of something else too.  If I go on disability I will lose my insurance through my job eventually.  I will then be covered by medicare?  But what will happen to my children?  I have insurance for them through my employer.  Would they be uninsured?  I could never let that happen.  I want to just go home and cry myself to sleep thinking about this.

I am sorry that you have so many heavy things weighing on you.

If you did lose your job, I believe that your children would be covered for healthcare.   President Obama recently signed the SCHIP legislation, which expands healthcare coverage to all qualifying uninsured children.  SCHIP stands for State Children’s Health Insurance Program.  This program is administered through the states.  If you type "SCHIP" and the name of your state into the Google search box, the information needed should come up. 

[esherman77]

I know working is very hard. I too work and I work overnights. Imagine that!!! I know it is getting harder and harder for me to work 8hr shifts. For the last few months I have been putting in somewhere between 37-39 hours. I guess thats not bad but it still hurts my paycheck.

I do know that if I ever had to quit working I would probably go back to school. Sitting at home, twittling my thumbs is just not me.

Good luck!!
Elaine

[Hanify]

Oh Beth, I feel for you.  What a lot of worries.  I did haemo in centre for 3 months, then changed to PD with a cycler.  What is it about PD that you dislike so much?  I seriously love it compared to haemo. I feel like I can go about my life, and it's absolutely possible to do it at home by yourself.   If you wanted a really good chat about it I would be happy to talk.  My email is on my profile or you could pm me.  Perhaps we could meet up in the chat room.  I am a teacher too, but have been really lucky with my school's attitude.  Also I was already working part time anyway - I'm just more part time now.  Anyway, know that we're all thinking of you and hoping you can get through this worrysome time.

[Wenchie58]

Beth..
 When you mentioned UNISERV I knew the union, even though I don't know NJEA...I am deep in NYEA.  I can only give you some tidbits of things to look into...the ADA only states that your district MUST make reasonable accommodation for your disability.  It could be any of the suggestions posted above or they could say those suggestions are not reasonable...even though we all know they are.  Thats where the Union comes in...stay on them..be their worst nightmare...they will fight for you.
 Secondly you mentioned insurance...COBRA is available to you under federal law.  It is generally pricey so check other options. Your first 12 weeks off would be covered by Family Medical Leave Act and your insurance would cost the same as a working employee.
  Check all your options..fight for your rights.  Nine years...aren't you tenured?  I wish you all the best.  You cannot be forced to resign!