End of my rope

[jeannea]

So today I got a call from my disability insurance company. They have decided that I'm not disabled. They think I can go back to working full time at a pharmaceutical company. Except that I can't. Even assuming there were jobs, I'm so tired all the time that I can't go to work. My house isn't clean because I'm exhausted. My garden isn't weeded. I can barely keep up with doing PD and eating and showering. But no their medical people havve looked at my records and there's nothing to indicate I'm disabled. So I can't pay my mortgage or anything else. I do get Social Security but it's not enough to pay everything. I live alone and have no boyfriend or husband or anything to help me. I'm going to have to tap into my 401K to live while I make my appeal.

I calledd my dialysis office. Luckily they're really wonderful. The nurse said she's going to start drafting a letter to use for the appeal. I talked to a lawyer a few weeks ago and he said he would help me but it would cost about $7000 in all. Lovely.

My other problem is something called PRES. This is a condition you can get from an overdose of Prograf, an antirejecction drug that just about every transplant recipient is on. I didn't know about this til it happened to me. I got CMV which the doctors didn't diagnose. I had terrible intestinal pain so I didn't really eat but I still took my meds. I got an overdose of Prograf, had a seizure, went into a coma, intubated, transplanted kidney failed, woke up on dialysis. But it has caused changes to my brain. I have a lot of trouble focusing, concentrating, and remembering. My last job required a lot more mental power than I think I am capable of now. But the insurance company says that it doesn't matter what is happening with my brain. Any mental problems aren't covered beyond 24 months no matter what they are. Nice.

Because I am pretty compliant, my blood test numbers aren't terrible. If I was worse about doing my treatments and taking my medicine, I probably would have looked worse to the insurance company and it would have been better for me.

Not sure what to do now. I wonder if just giving up is easier. I know some of you seem to be able to work but I just don't feel good. I'm exhausted and have nausea most days. I don't even feel like myself in my brain. It's really hard to describe. I was always really smart and good at my job. Now I can't even read a book from beginning to end. I hate my life.

[paul.karen]

What is disability insurance? 

Nice how people in an office can say we are fine to work.
Guess our doctors are clueless and people we have never met and likely have no medical background know whats best for us.

Good Luck

[dawn24]

  I can't even imagine . . .

[okarol]

If you get social security payments it is because you have been designated as disabled. My husband gets this rejection notice once a year and we have to fight it. His disability insurer is always trying to find a way to avoid paying his partial salary, even 12 years later. I wish you had more help. Don't give in - keep fighting - you and your employer paid good money for that insurance and you're entitled to receive it. 

[Willis]

I just started PD last May and have continued to work full-time. But I have a lot of difficulty staying focused and missing MUCH time due to dr appts, coming in late every morning, etc. Fortunately, so far because I work for a small 5-person company and what I do is valuable they have managed. But billable hours is what matters and those are going down down down and my boss just can't afford to maintain my salary. So I'm getting pay cuts just so the company can pay the other employees.

I'm sure I could get my SSDI but how to live on that? 

Like you, even though my numbers are good and I'm not too bad physically, I'm mostly mentally exhausted and burned out. I'm almost to the point of saying **** it and moving into a trailer and getting food stamps and quit trying to be the productive citizen I've always been.

 

[paul.karen]

Willis im kinda in tha same boat.

Problem for me is if i were to go on SSDI i hear it can take up to 6 months to collect it.
And you cant work in that time.

On the plus side if there is one i think if you collect SSDI you can work part time up to about $800 a month.  But from what i hear dont go over or they will take away your SSDI benifits.....

[Willis]

It's discouraging to see the TV ads advertising free drugs, cell phones, etc...if you are poor enough. I have a graduate degree, spent more than 9 years on active military duty (petroleum pipeline engineer), became an industrial engineer and college professor of logistics, then ran my own business for 15 years before partnering up with my current company. Somehow in all that I have a very modest nest-egg (<50K). I guess I have to blow through all that and live it up. I have a travel trailer, so maybe I should take my RV and travel the country until my truck's transmission falls out. Then in a year when all the money is gone I'll actually be poor and then the do-gooders will be all over it trying to help me out. Sorry if I sound bitter...I'm really not. I'm an optimist at heart, but crap...the middle class is taking it on the chin these days.



 

[jbeany]

Yup.  My plans for the money I got from selling my gram's house are to spend it, not save it.  I'm using it for tuition now.  If I don't get a job in time, I'll probably have to spend it on private insurance.  Otherwise, I want a mortgage-free house and a paid-off car, as soon as I know I have a job with insurance.  There's no point in having a lot of savings - it just means I'd have to spend the savings before I could any help if I reject my transplant.  Better to have a tiny house with nothing but utility bills to pay out of my disability, and a paid off used car.  Lots of money in the bank will not help me if I get sick again.  Warped, but true.

jeannea, I hope you can manage to fight this!  It's some penny pincher somewhere who doesn't give a darn, and it's just not fair.   

[MooseMom]

R.I.P. middle class, especially if you are unfortunate enough to be ill and can't exercise enough "personal responsibility."

paul.karen, I tried to send you a PM but your inbox is full.  Must be lots of messages from IHDers who have missed you, including me.  I'm really happy to see you back here; seeing your post is most definitely the high point of my day.  Hope you are well.

[lmunchkin]

Jeanne, you are not alone in all of this, there are a bunch of us falling on hard times right now! J. could have stopped working and drawing a Disability check when he was first diag. in 2004, but no, he wanted to work!  When he finally gave it up Jan of this year, he filed for Disability in Feb. and has yet to get a check!  We were always told the ESRD was automatic, but not so!  Because of the cuts in government, he may never see it, even though he has been paying into it for almost 40 yrs now!

They are raping the American people of everything!  If you have any Debt at all, you are "    " out of luck! 

I thank God, that I have a little job!  It is a small business that I have been working at since 1999.  They have been there for J & I, and Iam so greatful! It don't pay much, but they are a great bunch to work for and all have been there a long time.  That says alot about a company!

I just wish the government would give my husband what is due him.  HE DESERVES IT!        

lmunchkin