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In a message dated 4/7/2006 12:17:06 P.M. Eastern Daylight Time,

pmiller789@... writes:

Just curious....has anyone applied for and received Social Security

Disability as a result of CML?

Yes, I have. I received it six months after I applied for Disability due to

diagnosis of CML and horrific side effects of Interferon/ARAC, back in 2001, I

believe. It takes huge amounts of paperwork to fill out, you need to get a

case worker, and get your doctor to sign a statement if required. I was

reading someone else's post, Jackie's I believe, who did the same thing I did.

It

takes six months to receive your first check, from the time you apply and are

accepted. I somehow mistakenly thought that I would receive " back pay "

from the day of diagnosis and was shocked when I was told no, the checks start

only after the six month waiting period.

I want to tell everyone that Social Security implemented a program to help

people like us, people with cancer, to try and get us back into the workforce

if we thought we could handle it, without penalizing our payments. It is

called " Ticket to Work " program. Some states in the US do not participate, but

Massachusetts did. When I received my certificate, I was told to call a case

worker to get " hired " by area companies and corporations that were participating

in this program. Not one company in my area had a position and I was pretty

upset because I had felt well enough to try and work a few days a week, and

was excited that this program would help us feel like we were getting back

into the maintstream of society. The companies were supposed to train you,

work

around your disabling side effects, and give you a job. But as I said, every

place I called said the positions were " filled " which could not have been

possible because my ticket was one of the first issued, as I was told by the

case worker, so I would have been in the front of the list to get a job.

My thought was that the companies took the money from Social Security but

did not employ anyone. So I seriously thought they " scammed " Social Security.

If anyone else has gotten this Ticket to Work, and did find a job, please let

me know. I'd like to find out if one person benefited from the program. -

Lynne A.

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  • 9 months later...

Barbara,

It took me 1 1/2 years to get my disability. I eventually had to go to a

lawyer. I was on Interferon and ara-c at the time. It may be harder if you are

on Gleevec, as there aren't as many know side effects as some of the older

drugs.

Barbara <barb521@...> wrote:

I know a lot of you have been able to continue working your job.

However, for those unable to continue employment, is there anyone that

has been approved for SS disability? I would apprciate if you would

email me as I have some questions.

Thank You

Barbara

barbdig@...

---------------------------------

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I am currently working 2 days @ 8 hours each instead of full time because of the

side-effects I'm experiencing. I hate not being able to work full time and I

especially hate not being able to be a fully involved, fully energized Mom and

wife like I had been. I am, however, alive and for that I am so thankful for

Gleevec eventhough it causes me such discomfort and fatigue. My new doctor as

well as my old oncologist agree that my side-effects from Gleevec are

debilitating enough that I should not and can not go back to work full time. I

have been on this work schedule since diagnosis in 10/05. I have tried a few

times to add a few hours or a day here and there but I find that any more hours

than those I'm working cause my side-effects to worsen and leave me so wiped out

I literally can't even move.

My long term disability company is begining to be difficult about things; saying

stuff like, 'we have thousands of patients with CML who are all fine to work'

and 'as far as we are concerned your cancer is cured'. I forsee that I may have

an uphill battle ahead of me to help them to understand that some patients on

Gleevec have moderate to extreme side-effects that cause them not to be able to

function as they would normally. I have not had to approach SS Disability yet

and hope that I will not as I've heard that is a long uphill battle and that you

HAVE To have a lawyer to win.

Hang in there and I hope you are able to get your disability. Please keep us

updated.

Thanks,

[ ] Social Security Disability

I know a lot of you have been able to continue working your job.

However, for those unable to continue employment, is there anyone that

has been approved for SS disability? I would apprciate if you would

email me as I have some questions.

Thank You

Barbara

barbdig (DOT) com

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Hi.

I was approved for Disability about 6 weeks after I was diagnosed and

unable to work. I was on Gleevec at the time-now I am on

interferon. I did not have any problems receiving it and have not

had any problems with them in the meantimes. I was told that it

would be indefinite as to how long i could remain on it although I

hope to be back at work by summer. I am in Canada and am not sure

where you are not this may not be the case for you.b

>

> I know a lot of you have been able to continue working your job.

> However, for those unable to continue employment, is there anyone

that

> has been approved for SS disability? I would apprciate if you

would

> email me as I have some questions.

> Thank You

>

> Barbara

> barbdig@...

>

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Dear ,

I'm surprised that your LTD insurance company would be second-

guessing your doctor's judgment. In my case, my doctor has been

very supportive and the insurance company has been very deferential

to him. Have your doctor's completed attending-physician forms to

support your claim?

As for SSD, it may be difficult to win without a lawyer, but it is

not impossible -- I was approved 3 months after my first

application. It may make sense to speak with a lawyer and find out

how they get paid -- if they do it on a contingent basis, taking

their fee out of any retroactive award, then it's less burdensome

for you. Sometimes the LTD company will pay the lawyer's fee since

it's in the LTD company's interest that you win SSD (they get to

reduce their payments to you by the amount of SSD you receive).

I hope this is somewhat helpful. Best of luck to you.

Warm regards.

>

> I am currently working 2 days @ 8 hours each instead of full time

because of the side-effects I'm experiencing. I hate not being able

to work full time and I especially hate not being able to be a fully

involved, fully energized Mom and wife like I had been. I am,

however, alive and for that I am so thankful for Gleevec eventhough

it causes me such discomfort and fatigue. My new doctor as well as

my old oncologist agree that my side-effects from Gleevec are

debilitating enough that I should not and can not go back to work

full time. I have been on this work schedule since diagnosis in

10/05. I have tried a few times to add a few hours or a day here

and there but I find that any more hours than those I'm working

cause my side-effects to worsen and leave me so wiped out I

literally can't even move.

> My long term disability company is begining to be difficult about

things; saying stuff like, 'we have thousands of patients with CML

who are all fine to work' and 'as far as we are concerned your

cancer is cured'. I forsee that I may have an uphill battle ahead

of me to help them to understand that some patients on Gleevec have

moderate to extreme side-effects that cause them not to be able to

function as they would normally. I have not had to approach SS

Disability yet and hope that I will not as I've heard that is a long

uphill battle and that you HAVE To have a lawyer to win.

> Hang in there and I hope you are able to get your disability.

Please keep us updated.

> Thanks,

>

>

>

>

> [ ] Social Security Disability

>

> I know a lot of you have been able to continue working your job.

> However, for those unable to continue employment, is there anyone

that

> has been approved for SS disability? I would apprciate if you

would

> email me as I have some questions.

> Thank You

>

> Barbara

> barbdig (DOT) com

>

>

>

>

>

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Thanks , it took me by surprise that the LTD lady was so mean as well. She

had not seemed difficult before and this attitude just came on the last time I

spoke with her. I was in tears after I got off the phone thinking something was

wrong with me that I couldn't work. I realy don't want to be part-time, I'd

much rather be well but it is what it is. The disability lady realy made me

feel bad. I'm realy hoping she was just having a bad day or something and that

she isn't like that from here out. Thanks for the feedback, hopefully we'll all

get to where we need to be.

:}

[ ] Social Security Disability

>

> I know a lot of you have been able to continue working your job.

> However, for those unable to continue employment, is there anyone

that

> has been approved for SS disability? I would apprciate if you

would

> email me as I have some questions.

> Thank You

>

> Barbara

> barbdig (DOT) com

>

>

>

>

>

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I can give you my experience if you care to email. I couldnt work and was on SSD

and

LTD. What questions do you have?

Denice

doveh12 <deh12@...> wrote:

Dear ,

I'm surprised that your LTD insurance company would be second-

guessing your doctor's judgment. In my case, my doctor has been

very supportive and the insurance company has been very deferential

to him. Have your doctor's completed attending-physician forms to

support your claim?

As for SSD, it may be difficult to win without a lawyer, but it is

not impossible -- I was approved 3 months after my first

application. It may make sense to speak with a lawyer and find out

how they get paid -- if they do it on a contingent basis, taking

their fee out of any retroactive award, then it's less burdensome

for you. Sometimes the LTD company will pay the lawyer's fee since

it's in the LTD company's interest that you win SSD (they get to

reduce their payments to you by the amount of SSD you receive).

I hope this is somewhat helpful. Best of luck to you.

Warm regards.

>

> I am currently working 2 days @ 8 hours each instead of full time

because of the side-effects I'm experiencing. I hate not being able

to work full time and I especially hate not being able to be a fully

involved, fully energized Mom and wife like I had been. I am,

however, alive and for that I am so thankful for Gleevec eventhough

it causes me such discomfort and fatigue. My new doctor as well as

my old oncologist agree that my side-effects from Gleevec are

debilitating enough that I should not and can not go back to work

full time. I have been on this work schedule since diagnosis in

10/05. I have tried a few times to add a few hours or a day here

and there but I find that any more hours than those I'm working

cause my side-effects to worsen and leave me so wiped out I

literally can't even move.

> My long term disability company is begining to be difficult about

things; saying stuff like, 'we have thousands of patients with CML

who are all fine to work' and 'as far as we are concerned your

cancer is cured'. I forsee that I may have an uphill battle ahead

of me to help them to understand that some patients on Gleevec have

moderate to extreme side-effects that cause them not to be able to

function as they would normally. I have not had to approach SS

Disability yet and hope that I will not as I've heard that is a long

uphill battle and that you HAVE To have a lawyer to win.

> Hang in there and I hope you are able to get your disability.

Please keep us updated.

> Thanks,

>

>

>

>

> [ ] Social Security Disability

>

> I know a lot of you have been able to continue working your job.

> However, for those unable to continue employment, is there anyone

that

> has been approved for SS disability? I would apprciate if you

would

> email me as I have some questions.

> Thank You

>

> Barbara

> barbdig (DOT) com

>

>

>

>

>

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Well, guess that's what I get for not telling my doctor about all of my side

effects. I knew, from reading and the list, what the side effects were and

just tolerated them without complaining too much to the doctor I can just go

to the grocery store will and have to come home and take a nap. That's in

addition to what happens with every bite that goes into my body, the fact

that I spend most of the winter wrapped in 3 layers of clothing because I

can't get warm. How in the world could I handle an 8+ hour job. If I were

an employer, I wouldn't want someone that has to be close to the restroom,

take naps frequently, have problems concentrating or remembering things and

never knew when they would feel like coming to work. I had been doing taxes

for the past 6 years. Can you imagine the germs I get sitting in that

everyday, not to mention, worrying if I was going to remember all the right

things to include in the tax return.

I wonder what it is the lawyers do to convince the SS Board that people are

unable to work?

It was obvious from the response of my application they knew nothing about

CML. They didn't even know what it was because they said, " you said you are

disabled because of leukemia, cnl, joint pain, nausea and weakness. The

treatment you have been receiving has brought this condition under

control.(it has?) Although you may experience discomfort, evidence shows

you are able to move about and perform your normal daily activities. "

Oh well, maybe I need to do a little more research. I guess I didn't give

them enough information to understand my limitations.

Thanks for listening.

Barbara

_____

From: [mailto: ] On Behalf Of

lunaemica@...

Sent: Tuesday, February 06, 2007 10:06 AM

Subject: Re: [ ] Social Security Disability

I am currently working 2 days @ 8 hours each instead of full time because of

the side-effects I'm experiencing. I hate not being able to work full time

and I especially hate not being able to be a fully involved, fully energized

Mom and wife like I had been. I am, however, alive and for that I am so

thankful for Gleevec eventhough it causes me such discomfort and fatigue. My

new doctor as well as my old oncologist agree that my side-effects from

Gleevec are debilitating enough that I should not and can not go back to

work full time. I have been on this work schedule since diagnosis in 10/05.

I have tried a few times to add a few hours or a day here and there but I

find that any more hours than those I'm working cause my side-effects to

worsen and leave me so wiped out I literally can't even move.

My long term disability company is begining to be difficult about things;

saying stuff like, 'we have thousands of patients with CML who are all fine

to work' and 'as far as we are concerned your cancer is cured'. I forsee

that I may have an uphill battle ahead of me to help them to understand that

some patients on Gleevec have moderate to extreme side-effects that cause

them not to be able to function as they would normally. I have not had to

approach SS Disability yet and hope that I will not as I've heard that is a

long uphill battle and that you HAVE To have a lawyer to win.

Hang in there and I hope you are able to get your disability. Please keep us

updated.

Thanks,

[ ] Social Security Disability

I know a lot of you have been able to continue working your job.

However, for those unable to continue employment, is there anyone that

has been approved for SS disability? I would apprciate if you would

email me as I have some questions.

Thank You

Barbara

barbdig (DOT) com

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At 10:28 AM 2/6/07 -0800, you wrote:

>Thanks , it took me by surprise that the LTD lady was so mean as

>well. She had not seemed difficult before and this attitude just came on

>the last time I spoke with her. I was in tears after I got off the phone

>thinking something was wrong with me that I couldn't work. I realy don't

>want to be part-time, I'd much rather be well but it is what it is. The

>disability lady realy made me feel bad. I'm realy hoping she was just

>having a bad day or something and that she isn't like that from here out.

>Thanks for the feedback, hopefully we'll all get to where we need to be.

>:}

>

Hi ,

If you are not already doing this, I would keep a fairly detailed diary of

symptoms, side effects, etc....

It is hard when you just say " I don't feel well, I am fatigued " .........you

need to back it up with specific examples. Every day document if you felt

well, or what you noticed.....even when you are working.

One thing you can say/explain to the disability person is that the problems

you are having are NOT from CML.....but are a side effect of your

treatment, and that is on-going. Tell her, you are not cured and will be on

treatment long term.

C.

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Thank you , I hadn't done any sort of symptom journal. I'd just been

reporting my symptoms to my doctor. I told the disability lady that my problems

were side-effects and that my cancer was not cured but she didn't seem very

receptive to anything I said. I just looked and my disability check went

through but is less than half what it should be so I e-mailed her to ask why

that is. I think I've got an uphill battle ahead of me.

Thank you,

Re: [ ] Social Security Disability

At 10:28 AM 2/6/07 -0800, you wrote:

>Thanks , it took me by surprise that the LTD lady was so mean as

>well. She had not seemed difficult before and this attitude just came on

>the last time I spoke with her. I was in tears after I got off the phone

>thinking something was wrong with me that I couldn't work. I realy don't

>want to be part-time, I'd much rather be well but it is what it is. The

>disability lady realy made me feel bad. I'm realy hoping she was just

>having a bad day or something and that she isn't like that from here out.

>Thanks for the feedback, hopefully we'll all get to where we need to be.

>:}

>

Hi ,

If you are not already doing this, I would keep a fairly detailed diary of

symptoms, side effects, etc....

It is hard when you just say " I don't feel well, I am fatigued " ... ......you

need to back it up with specific examples. Every day document if you felt

well, or what you noticed..... even when you are working.

One thing you can say/explain to the disability person is that the problems

you are having are NOT from CML.....but are a side effect of your

treatment, and that is on-going. Tell her, you are not cured and will be on

treatment long term.

C.

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