A Serious, Life Changing Question

[Stacy Without An E]

For the last eight months, I have had incredible difficulty getting through the workday.  I'm extremely fatigued, very dizzy a majority of the time I can't seem to feel better even after spending entire weekends in bed preparing to start another work week.

I've spoken to my nephrologist time and time again, but since my labs are excellent for a Dialysis patient, they don't seem to be concerned about how I'm feeling.

I guess my questions are two-fold:

1) For long term Dialysis patients, has this happened to you?
2) If I turn to disability, is there a way to find out how much I would receive a month?

Thank you for any input you can provide.

[Romona]

There should be an area on your last social security statement how much for disability. I glanced at mine but I don't remember if there is anything on it for sure.

[Sunny]

Firstly, find out if you qualify for long term disability through your employer.Your Human Resources Dept will be able to help you with this.
Secondly, if your employer does not have a private plan, then it means they've been paying for you into Social Security and you would qualify for Social Security. Either way, you will have coverage. Then it is a question of how much your disability benefits are, and that can differ depending on your salary, or how long you've been paying into Social Security. I'm sorry you're feeling so lousy. I think it's so interesting that nephrologists will tell us we should be feeling fine, our numbers look good. We feel what we feel!

[jbeany]

You should have gotten a notice from SS in the mail that details how much your current benefits would be.  I think you can sign up for the SS website and find out the info there as well.

I was feeling like that before I even started D, so I was on SS years before, so I don't have any good answers to the health question.  I hope you get some.

[sullidog]

The other question does your employer count phatigue as disability? Mine doesn't, they said dialysis and the symptems associated with it is not disability. I think it should be though, but that's just me. No one knows how we feel but ourselves.
Troy

[Lillupie]

The other question does your employer count phatigue as disability? Mine doesn't, they said dialysis and the symptems associated with it is not disability. I think it should be though, but that's just me. No one knows how we feel but ourselves.
Troy

My own Nephrologist will agree with your employer!
 Myself, am struggling with the opposite. I NEED to work now. I just cant afford to with a 4 year old daughter and bills piling up high as the sky. I am scared because I am so tired and drained most of the time. I do PD at night for 8 hours, and an exchange during the day, am the family's taxi. I am just afraid that I will end up quitting my job.

Lisa

[jbeany]

The other question does your employer count phatigue as disability? Mine doesn't, they said dialysis and the symptems associated with it is not disability. I think it should be though, but that's just me. No one knows how we feel but ourselves.
Troy

What?  Since when is organ failure not a disability?  Anything that requires life support is most decidedly a disability! 

[Jean]

I could be wrong, but I think disability from your employer is 85% of your salary. Basically it is just what you were getting when you were working, at least that was the way it worked for me. Plus, it is tax free!!!!

[billybags]

jbeany, You would have thought that dialysis was a disability, but NO, people think because you can look normal, go to work, you do D at the unit, things are ok. We know they are not. To claim disability in UK you practically have to have people looking after you 24/7 They ask stupid questions like "How far can you walk"  "Can you dress your self" I can not claim any thing because I am over 65 and getting state pension.

[paul.karen]

Sorry your feeling so bad Stacy.

Everyones SS disability is different.  I looked into it myself and asked my Social worker at the clinic (talk to yours if you have one).  My paperwork from SS said i would make X amount of dollars which is pretty much a quarter of what I'm making now.  My Social worker said i could work part time to make up some of the difference.  But i cant go over a certain amount or they would kick me off SS.
So if i were to work part time while on SS i could almost make what I'm making now (almost) and would only have to work part time.  I hope this holds true for me in the future if i can no longer work and start to feel like you or so many others.

So if you find that going on SS disability isn't enough remember that you can maybe stay at your job collect your benefits and go from full time to part time if that is an option.  Or pick up a part time job elsewhere.

best of luck.

[Rerun]

Mine got to the point where I wasn't doing anything well.  I wasn't eating right for my renal diet and my work sucked because I was missing so much time.  I took a retirement disability and didn't care how much I got.  I could not work and do dialysis.  I ended up with 40% of what I was making.  I feel pretty good about that.  I get paid for staying home.  I do volunteer 10 hours a week to try and give back.

Stacy you have to do it if your want to feel better.  You can work part time after you are awarded disability.

[Sunny]

Disability Insurance is NOT always tax free. That would depend on many independent factors. I pay taxes on my disability.
Plus being too fatigued to work can qualify as disability if it is related to ESRD and your nephrologist is willing to sign off on it. Yes, they do ask a lot of stupid arcane questions like: how far can you walk? how long can you stand? how long can you sit? can you go grocery shopping? can you clean your house? Etc.,etc. But if your not feeling well, it's worth a try to see what kind of disability benefits you qualify for. As my own nephrologist has told me, If work is killing you, it's not worth dying for when I can put you on disability.

[Rerun]

I pay taxes too. If you get more than $26,000 a year you pay taxes.  So if you get $26,500 you pay taxes on the whole thing, not just the $500.  Sucks!

[cdwbrooklyn]

Hi Stacy,

I’ve been on D for 11 years now and yes I have some days where I feel so tired.  Are you doing any type of exercises?  Also, are you taking any iron pills?  Sometimes when your iron is low it can cause you to be tired or when it is too high.   There are vitamins that can give you energy.  Maybe you should try some vitamins and a little exercising and see if that helps.  Don’t quit your job if you don’t have to.  Also, I’ve noticed that blood pressure pills can make you tired as well.  When you get some time, take a look at the side effects that the blood pressure pills may cause.   I found that my blood pressure pills caused me tiredness whereas I would fall to sleep in front of my computer at work around midday and fall to sleep at lunch while I’m talking to my coworkers.  After changing the blood pressure pills, I started to feel much better and less tired.  It's not the machine that makes you tired, it’s your meds side effects.

[Stacy Without An E]

I wanted to thank everybody for their input.  I have been taking a look at every aspect of my health care to see what might be causing this change in how I feel.  I do exercise 3 to 4 days a week, but I haven't been taking the Renal vitamin supplement for quite a while.  I just placed an order and will see if that has any benefit.

I do have a lot of vacation time saved up (I just took a week and spent most of it in bed) but its difficult to do because of ratings books.  Six months of the year the unspoken rule in radio is you shouldn't take a day off because people are filing out their radio diaries.

Thanks again for all the input.  Thank goodness for IHD.

[Sunny]

My family was asked to fill out a rating book for radio. I'm excited, I never get asked to do things like that. I can see why you have concern about taking vacation time during radio rating times. I suppose it could affect your on radio ratings if you take time off during rating weeks. Not an easy dilemma for you.

[amyquah]

I understand EXACTLY how you feel. I am sooo drained and tired - all of the time. I am in my sixth month of PD, I am on the machine 9 hours per night with one exchange during the day. 

I had to leave my job as an Advertising Coordinator that I loved - I was too tired and sick to work anymore. Since then I have applied for SS, we will see how that pans out. I am 48 years old, I sleep 14 - 16 hours a day. I have gone from being active just over a year ago; I live on a lake with trails all around, I loved the outdoors, gardening, working in my yard, walking my dogs, swimming and playing with my grandkids on our paddleboat - to barely making it out of bed each day. I was a "anal" houskeeper, everything spotless and in it's place, great cook, etc. - I now live in a messy house and can only open a can of soup on more than one occasion during the week.

My Nephrologist has said only that my iron is low. Other than that I should be fine! I have even passed out at a Restaurant and taken by ambulance to the hospital, my blood pressure low.  So, I don't know what to tell you, only that I completely understand.  Let  me know if you find out anything