Disability

[Guest guest]

In a message dated 1/10/03 12:41:57 AM Eastern Standard Time,

hominid2@... writes:

> I will be going out on

>

Hi Kimber,

well, that's a big step and a major change for you. Please try to not be

discouraged but to try to readjust your life in a most positive way. my

experience in having done this is that it is harder to get used to than

anyone would think. But, it can be done over a little time to get used to the

changes in your daily life.

Best Wishes, Poncho - GA

[Guest guest]

Poncho,

thank you. I've done my best to try and prepare myself for

disability as I knew it would happen sooner or later with

this disease. I just thought it would be later. But, I've

been gathering stuff for all my hobbies so that I can have

something to do and I plan to try and be more active here in

the support group and doing more research on pancreatitis. I

also intend to volunteer or something (after I've gotten my

SSDI) to get me around people, even if it's only for one day

a week for a few hours. And I love to be able to sleep in

instead of getting up at 5:00am every day. I'm basically a

night person and getting up early has always been difficult

for me. Thanks for your post and your caring advise.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

[Guest guest]

Poncho,

thank you. I've done my best to try and prepare myself for

disability as I knew it would happen sooner or later with

this disease. I just thought it would be later. But, I've

been gathering stuff for all my hobbies so that I can have

something to do and I plan to try and be more active here in

the support group and doing more research on pancreatitis. I

also intend to volunteer or something (after I've gotten my

SSDI) to get me around people, even if it's only for one day

a week for a few hours. And I love to be able to sleep in

instead of getting up at 5:00am every day. I'm basically a

night person and getting up early has always been difficult

for me. Thanks for your post and your caring advise.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

[Guest guest]

Poncho,

thank you. I've done my best to try and prepare myself for

disability as I knew it would happen sooner or later with

this disease. I just thought it would be later. But, I've

been gathering stuff for all my hobbies so that I can have

something to do and I plan to try and be more active here in

the support group and doing more research on pancreatitis. I

also intend to volunteer or something (after I've gotten my

SSDI) to get me around people, even if it's only for one day

a week for a few hours. And I love to be able to sleep in

instead of getting up at 5:00am every day. I'm basically a

night person and getting up early has always been difficult

for me. Thanks for your post and your caring advise.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

[Guest guest]

Hi Poncho...

I would " argue " that the disability process is SO long,

it can be 2-3 years, that Heidi will have plenty of time to think

things through...

Jeannine

[Guest guest]

Hi Poncho...

I would " argue " that the disability process is SO long,

it can be 2-3 years, that Heidi will have plenty of time to think

things through...

Jeannine

[Guest guest]

Hi Poncho...

I would " argue " that the disability process is SO long,

it can be 2-3 years, that Heidi will have plenty of time to think

things through...

Jeannine

[Guest guest]

I recieved mine in1996 after two years of teaching what it does to

people. I was straight forward and explained how it affected my daily life

both physically and emotionly. A lot of times people hide the damage it does

about the emotion wreck it can make of you by acting tough and not being

totaly open. Be " open' and honest with them because the mental side is as

important as the physical and when you put them together it causes more

problems than a lot are aware of. I had kept a log of the two years and

what dailey life was like to me. I recieved mine after being denied as

usual. My attorney had me write and exolain to them since I knew more than

he did by far and it worked for me.

Good luck my friend and God be with you.

Mountaineers are always free, Jim Foutty

[Guest guest]

I recieved mine in1996 after two years of teaching what it does to

people. I was straight forward and explained how it affected my daily life

both physically and emotionly. A lot of times people hide the damage it does

about the emotion wreck it can make of you by acting tough and not being

totaly open. Be " open' and honest with them because the mental side is as

important as the physical and when you put them together it causes more

problems than a lot are aware of. I had kept a log of the two years and

what dailey life was like to me. I recieved mine after being denied as

usual. My attorney had me write and exolain to them since I knew more than

he did by far and it worked for me.

Good luck my friend and God be with you.

Mountaineers are always free, Jim Foutty

[Guest guest]

I recieved mine in1996 after two years of teaching what it does to

people. I was straight forward and explained how it affected my daily life

both physically and emotionly. A lot of times people hide the damage it does

about the emotion wreck it can make of you by acting tough and not being

totaly open. Be " open' and honest with them because the mental side is as

important as the physical and when you put them together it causes more

problems than a lot are aware of. I had kept a log of the two years and

what dailey life was like to me. I recieved mine after being denied as

usual. My attorney had me write and exolain to them since I knew more than

he did by far and it worked for me.

Good luck my friend and God be with you.

Mountaineers are always free, Jim Foutty

[Guest guest]

I can really relate to the early retirment thing. I havent worked in 9 years

and yes I did get disability but I missed my job which I liked and the people

I worked with. I wasnt ready to sit at home its to some degree boring after

having an active life. People dont mean to be mean they just dont think. It

sounds good to some not having to work as hard as they do but its not all

its cracked up to be. Your social life that you had through work mates is

lost after awhile because you dont have the same things in common any more.

Some days you feel so rotten your not good for anything and its hard to keep

positive when you feel so finished. We just have to keep going as this is

the hand we have been delt and it could be worse. from Canada

[Guest guest]

Hi my name is and I have a question and hopefully you can answer.

My son-in-law have lupus in the blood. His family practitioner is in

the process of getting him a referral to see a lupus doctor. But in

the mean time could you please give me a list of foods that a person

with lupus should not be eating. For I was told that there are certain

foods that would help the condition and if you happen to know that

please share.

>>> franceskerr@... 08/24/04 06:32AM >>>

I think i started long term in 1995 and it was 1997 or 98 before i

actually received my disability from social security. The company i

worked for provided a company of lawyers that went to ss and

anything else i needed. i was given a mental disability [ i fell

apart right at work] thrilling scene, it must have been]wish i had

known it was lupus at the time but oh well. i sat and cried thru the

whole process with the judge did not understand 1 thing i brought a

friend so she could tell me what happened if i ever asked and

because she could answer any question about me after all we had been

fiends 35 years. you never ever get disability 1 st time around

rarely 2nd maybe 3rd. stick with it you will recieve benefits just

keep going back with doc papers.if any one wants co. name email me

and i find it for you.frances aka lilupielu

" The LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

Hi my name is and I have a question and hopefully you can answer.

My son-in-law have lupus in the blood. His family practitioner is in

the process of getting him a referral to see a lupus doctor. But in

the mean time could you please give me a list of foods that a person

with lupus should not be eating. For I was told that there are certain

foods that would help the condition and if you happen to know that

please share.

>>> franceskerr@... 08/24/04 06:32AM >>>

I think i started long term in 1995 and it was 1997 or 98 before i

actually received my disability from social security. The company i

worked for provided a company of lawyers that went to ss and

anything else i needed. i was given a mental disability [ i fell

apart right at work] thrilling scene, it must have been]wish i had

known it was lupus at the time but oh well. i sat and cried thru the

whole process with the judge did not understand 1 thing i brought a

friend so she could tell me what happened if i ever asked and

because she could answer any question about me after all we had been

fiends 35 years. you never ever get disability 1 st time around

rarely 2nd maybe 3rd. stick with it you will recieve benefits just

keep going back with doc papers.if any one wants co. name email me

and i find it for you.frances aka lilupielu

" The LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

Hi my name is and I have a question and hopefully you can answer.

My son-in-law have lupus in the blood. His family practitioner is in

the process of getting him a referral to see a lupus doctor. But in

the mean time could you please give me a list of foods that a person

with lupus should not be eating. For I was told that there are certain

foods that would help the condition and if you happen to know that

please share.

>>> franceskerr@... 08/24/04 06:32AM >>>

I think i started long term in 1995 and it was 1997 or 98 before i

actually received my disability from social security. The company i

worked for provided a company of lawyers that went to ss and

anything else i needed. i was given a mental disability [ i fell

apart right at work] thrilling scene, it must have been]wish i had

known it was lupus at the time but oh well. i sat and cried thru the

whole process with the judge did not understand 1 thing i brought a

friend so she could tell me what happened if i ever asked and

because she could answer any question about me after all we had been

fiends 35 years. you never ever get disability 1 st time around

rarely 2nd maybe 3rd. stick with it you will recieve benefits just

keep going back with doc papers.if any one wants co. name email me

and i find it for you.frances aka lilupielu

" The LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

>>> rwhitney@... 08/24/04 07:09AM >>>

Hi my name is and I have a question and hopefully you can answer.

My son-in-law have lupus in the blood. His family practitioner is in

the process of getting him a referral to see a lupus doctor. But in

the mean time could you please give me a list of foods that a person

with lupus should not be eating. For I was told that there are

certain

foods that would help the condition and if you happen to know that

please share.

>>> franceskerr@... 08/24/04 06:32AM >>>

I think i started long term in 1995 and it was 1997 or 98 before i

actually received my disability from social security. The company i

worked for provided a company of lawyers that went to ss and

anything else i needed. i was given a mental disability [ i fell

apart right at work] thrilling scene, it must have been]wish i had

known it was lupus at the time but oh well. i sat and cried thru the

whole process with the judge did not understand 1 thing i brought a

friend so she could tell me what happened if i ever asked and

because she could answer any question about me after all we had been

fiends 35 years. you never ever get disability 1 st time around

rarely 2nd maybe 3rd. stick with it you will recieve benefits just

keep going back with doc papers.if any one wants co. name email me

and i find it for you.frances aka lilupielu

" The LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

>>> rwhitney@... 08/24/04 07:09AM >>>

Hi my name is and I have a question and hopefully you can answer.

My son-in-law have lupus in the blood. His family practitioner is in

the process of getting him a referral to see a lupus doctor. But in

the mean time could you please give me a list of foods that a person

with lupus should not be eating. For I was told that there are

certain

foods that would help the condition and if you happen to know that

please share.

>>> franceskerr@... 08/24/04 06:32AM >>>

I think i started long term in 1995 and it was 1997 or 98 before i

actually received my disability from social security. The company i

worked for provided a company of lawyers that went to ss and

anything else i needed. i was given a mental disability [ i fell

apart right at work] thrilling scene, it must have been]wish i had

known it was lupus at the time but oh well. i sat and cried thru the

whole process with the judge did not understand 1 thing i brought a

friend so she could tell me what happened if i ever asked and

because she could answer any question about me after all we had been

fiends 35 years. you never ever get disability 1 st time around

rarely 2nd maybe 3rd. stick with it you will recieve benefits just

keep going back with doc papers.if any one wants co. name email me

and i find it for you.frances aka lilupielu

" The LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

>>> rwhitney@... 08/24/04 07:09AM >>>

Hi my name is and I have a question and hopefully you can answer.

My son-in-law have lupus in the blood. His family practitioner is in

the process of getting him a referral to see a lupus doctor. But in

the mean time could you please give me a list of foods that a person

with lupus should not be eating. For I was told that there are

certain

foods that would help the condition and if you happen to know that

please share.

>>> franceskerr@... 08/24/04 06:32AM >>>

I think i started long term in 1995 and it was 1997 or 98 before i

actually received my disability from social security. The company i

worked for provided a company of lawyers that went to ss and

anything else i needed. i was given a mental disability [ i fell

apart right at work] thrilling scene, it must have been]wish i had

known it was lupus at the time but oh well. i sat and cried thru the

whole process with the judge did not understand 1 thing i brought a

friend so she could tell me what happened if i ever asked and

because she could answer any question about me after all we had been

fiends 35 years. you never ever get disability 1 st time around

rarely 2nd maybe 3rd. stick with it you will recieve benefits just

keep going back with doc papers.if any one wants co. name email me

and i find it for you.frances aka lilupielu

" The LUPIES Store " Come check out our store...

http://www.cafepress.com/thelupies

" The LUPIES Web Page "

http://www.itzarion.com/lupusgroup.html

" The LUPIES online photo albums! "

Check out what your fellow Lupies look like...

http://www.picturetrail.com/lupies

[Guest guest]

You will be okay.

I had to leave my job as a special education teacher consultant in

early Feb. after 23 years in this job and more before that. I also

loved my job, but I saw how much it was taxing me and finally made the

decision. I have found lots to keep me busy. I miss the kids and staff

I worked with, but am learning to maintain contacts and hopefully will

find ways to use my skills.

I'm sure you will find it difficult in the beginning, but it does get

better. Feel free to e-mail me privately if you need some support from

a fellow " had to leave the job " person.

Hugs,

laurie

>

>

> My neuro and pulmo doc both agree that I need to pursue disbility. I am

> sad as this will probably be my last weekend working. I am a Labor and

> delivery nurse and love my job. I have been a nurse for 20 yrs and am

> sad to be leaving. But I need to do what is best for me. I have short

> and long term disability that should be approved fairly quickly and

> down the road file for social security disabilty. I am not worried

> about that right now. I guess I am having a pity party right now but I

> will be ok. Anyone have any suggestions? Thanks!

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

, I can totally relate to your situation and I'm really sorry.

It has taken me about 2 years to get used to the idea of not working

anymore. I too loved my job. Keep in mind however, that leaving

your job doesn't mean leaving life ! I decided to return to school

and finish my BS. Even if it takes forever for me to do it, I

figured it was a good opportunity to stay socially active and

mentally too. I only take one class per semester so I don't get

burned out. I also registered with disability services in case I'm

in the hospital or just too sick to attend class. Maybe you've been

always wanting to find the time to learn a new craft or something ?

Now is your chance ! Consider this an opportunity. Just remember

to not overdo it...maybe one night a week for a couple of hours ?

Also, as I mentioned in a previous post, get on that Social Security

IMMEDIATELY !!! I can't stress it enough. The process can take a

few years to get approved ( I've waited almost 2 years just for a

hearing date and still don't have one ), and the pay is retro-active

so you can apply now. Don't hesitate to hire an attorney who can

help you through the process. The paperwork stinks...a real pain in

the *** !

Hugs and best of luck to you,

Bug

[Guest guest]

I can empathize with you completely, I tried so hard for nearly a year

almost dragging my right leg trying to hold down my job. I was a person who

never missed work or went home sick but after a few times of both happening my

supervisor went to bat for me and we tried for short term disability. My

neurologist and my PCP both acted like I was commiting a sin by asking them for

help and all I couuld get out of my neuro was that I had a gait problem due to

Parkinsons (which I recently found out that I did not have) and my PCP stated

only that I had Osteoarthritis in my left knee, of course I was turned down. I

was told I could re-apply so I called Dr. Baker (my orthopaedic doctor) he had

me come in and after he wrote them I was approved for the first short term

disability right away. I am 69 years old and had been with Kansas Medicaid for

nearly 20 years. They have been very kind to me and I am still classified as a

non-working employee thru the end of the year so I am

eligible for all benefits and I can keep my Cigna insurance to pay for my

medications. I will apply for Medicare in 2006 and hopefully they will have

some kind of prescription added by then. Leaving my work was hard for me and I

also felt I should quit driving so I am at the mercy of Topeka Transit as I use

their Lift service to get me to the doctors. Don't wait to file for disability

as my 48 year old son filed when he knew he was not going to be able to keep

climbing ladders, etc and disability claim was not approved until last December

and he had passed away August 25, 2004 but at least his medical bills were taken

care of by them. I hope your disability claims and all else in your life will

go as smoothly as possible. I will keep you in my thoughts andprayers,

Dolores

lanebristow lanebristow@...> wrote:

My neuro and pulmo doc both agree that I need to pursue disbility. I am

sad as this will probably be my last weekend working. I am a Labor and

delivery nurse and love my job. I have been a nurse for 20 yrs and am

sad to be leaving. But I need to do what is best for me. I have short

and long term disability that should be approved fairly quickly and

down the road file for social security disabilty. I am not worried

about that right now. I guess I am having a pity party right now but I

will be ok. Anyone have any suggestions? Thanks!

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

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

[Guest guest]

I can empathize with you completely, I tried so hard for nearly a year

almost dragging my right leg trying to hold down my job. I was a person who

never missed work or went home sick but after a few times of both happening my

supervisor went to bat for me and we tried for short term disability. My

neurologist and my PCP both acted like I was commiting a sin by asking them for

help and all I couuld get out of my neuro was that I had a gait problem due to

Parkinsons (which I recently found out that I did not have) and my PCP stated

only that I had Osteoarthritis in my left knee, of course I was turned down. I

was told I could re-apply so I called Dr. Baker (my orthopaedic doctor) he had

me come in and after he wrote them I was approved for the first short term

disability right away. I am 69 years old and had been with Kansas Medicaid for

nearly 20 years. They have been very kind to me and I am still classified as a

non-working employee thru the end of the year so I am

eligible for all benefits and I can keep my Cigna insurance to pay for my

medications. I will apply for Medicare in 2006 and hopefully they will have

some kind of prescription added by then. Leaving my work was hard for me and I

also felt I should quit driving so I am at the mercy of Topeka Transit as I use

their Lift service to get me to the doctors. Don't wait to file for disability

as my 48 year old son filed when he knew he was not going to be able to keep

climbing ladders, etc and disability claim was not approved until last December

and he had passed away August 25, 2004 but at least his medical bills were taken

care of by them. I hope your disability claims and all else in your life will

go as smoothly as possible. I will keep you in my thoughts andprayers,

Dolores

lanebristow lanebristow@...> wrote:

My neuro and pulmo doc both agree that I need to pursue disbility. I am

sad as this will probably be my last weekend working. I am a Labor and

delivery nurse and love my job. I have been a nurse for 20 yrs and am

sad to be leaving. But I need to do what is best for me. I have short

and long term disability that should be approved fairly quickly and

down the road file for social security disabilty. I am not worried

about that right now. I guess I am having a pity party right now but I

will be ok. Anyone have any suggestions? Thanks!

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

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

[Guest guest]

Hi Alice, I know how you felt about leaving work, thankfully I found a way to be

useful to people and keep myself busy (so to speak). Catholic Charities in

Topeka has a program called " Friendly Visitors " , it is made up of caring (mostly

disabled) people who make phone calls to homebound people. I first became aware

of this program when I was trying to find a way to keep my Mother in her home

after she was diagnosed with Alzheimers. I make phone calls for them and there

is a 91 year old lady who is a diabetic that my call to her is a signal for her

to get out of bed, check her blood sugar, take her medicine and get her

something for breakfast. There are times when I feel I need to give her a

second call to make sure she is up and going. The morning after I had spend the

night in ICU with my son I couldn't remember her phone number so by the time my

head started to clear I called Catholic Charities to explain and have someone

give her a call, she had already called them and asked

them to check on me as I hadn't called her and she was afraid something was

wrong. I am so happy that I feel I can be of some use to someone else, I had

worked since I was 12 years old and after i lost my husband I was like you my

work was my life. Dolores

Alice justagram14@...> wrote:

I have to ditto the replies you’ve gotten thus far. I was totally involved

with my job which became my life. I worked an easy 65 hour week on the job

and brought it home too doing more late at night and over the weekends on

the computer the company provided me. I absolutely loved my job. When I

was forced to leave it, I thought that it was the end of my life and there

was no way I could handle that but you know – I did and over time, I feel

that leaving the job stabilized my health and although I’m not in perfect

health, I believe I have more endurance than I had before. Of course, you

have to know that before I left on disability, I went thru a period of about

6 months when I struggled to get from the living room to the bedroom or the

bathroom. Every movement was a chore and the Mito symptoms were extremely

bad. Since then, I have had some periods of extreme health problems but

being home allows me to take care of those bad days.

I’ve kept myself busy with other things. You would be surprised how busy

you can be when you are not working. There’s just so much that can take the

place of work and keeping yourself at the right pace is something you’ll

find necessary but easy to do. Think about this move to disability as a

positive step in helping yourself after having given so much of yourself to

others in the past. Now you are doing something for you. Eventually, this

becomes easy and you will grow to enjoy it.

Alice

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[Guest guest]

My grandmother benefited greatly from this type of program - often

local fire departments will do this on off hours, that's how it

worked with my grandmother.

Of course it matters how your voice and hearing are to do this, but

it is a great thing to do.

One thing that is sorely needed is readers for the blind, namely to

put books on tape. My colleague is a professor who is blind, and he

depends heavily on textbooks read by sighted people and stored on

tape for use by blind professors and students. You might have to

travel to a center to do this, but the only activity is reading out

loud, so depending upon your condition it might work out well.

Take care,

RH

>

> I have to ditto the replies you've gotten thus far. I was totally

involved

> with my job which became my life. I worked an easy 65 hour week on

the job

> and brought it home too doing more late at night and over the

weekends on

> the computer the company provided me. I absolutely loved my job.

When I

> was forced to leave it, I thought that it was the end of my life

and there

> was no way I could handle that but you know – I did and over time,

I feel

> that leaving the job stabilized my health and although I'm not in

perfect

> health, I believe I have more endurance than I had before. Of

course, you

> have to know that before I left on disability, I went thru a period

of about

> 6 months when I struggled to get from the living room to the

bedroom or the

> bathroom. Every movement was a chore and the Mito symptoms were

extremely

> bad. Since then, I have had some periods of extreme health problems

but

> being home allows me to take care of those bad days.

>

>

>

> I've kept myself busy with other things. You would be surprised how

busy

> you can be when you are not working. There's just so much that can

take the

> place of work and keeping yourself at the right pace is something

you'll

> find necessary but easy to do. Think about this move to disability

as a

> positive step in helping yourself after having given so much of

yourself to

> others in the past. Now you are doing something for you.

Eventually, this

> becomes easy and you will grow to enjoy it.

>

>

>

> Alice

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.10.3 - Release Date:

4/25/2005

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.308 / Virus Database: 266.10.3 - Release Date:

4/25/2005

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>

[Guest guest]

We get many questions about disability--and how to go about applying for SSDI.

It is possible to get SSDI when you have NS. You will need to call your local Social Security office, and either go by or ask them to mail you the application.

Once you have been unable to work for 6 consecutive months-- you need to get the ball rolling on your SSDI. It is important to make sure you meet all their deadlines--as any interruption in not getting the forms in to them, can make it so that you have to go thru the whole process again--and you lose your start date if you don't comply with the deadlines.

You want to get the names and addresses down of all the MD's you've seen. You will want copies of your medical records sent to SSDI (Soc security will give you a "Release of Med Records" form to sign). Also, request a copy of your medical records be sent to you. That way you have the information also.

The easiest way to request a copy of your records is to ask for a copy of your XRAY, CT's, Labs, MRI's--etc. when you go into the office for your appts with the MD. Keep a folder--so that as you go from specialist to specialist--you can give them the copy of the latest work that has been done. (Your MD's may be slow to get this to the other MD's--so hand carry your reports.)

Write down your symptoms, and how they effect you. For example, if you can no longer go grocery shopping without being so exhausted that you're down in bed for the next couple of days-- state that.

If you find you have problems remembering things--write it down. If you can't finish projects--write it down. If you don't know where you parked your car because of short-term memory loss-- write it down. If you need a cane, or oxygen, or a powerchair to get around--write it down.

If you need help with the finances because you can no longer get your bills paid on time--or can no longer balance the checkbook--write it down.

If you've lost the ability to enjoy sex, or have problems with family not understanding what has happened to you-- write it down.

Stress what you have lost due to chronic illness. Don't powder coat it-- tell it like it is.

Even if you don't have biopsy proven sarcoidosis-- yet have all the pain, neuropathy, the comprehension loss, the short-term memory loss, the exhaustion, fatigue, etc. there are tests that can prove the "subjective complaints" that you're trying to get the MD to understand. This test is Neuropsych Testing. This test can prove to the MD's that you aren't faking (malingering) and that depression alone is not the cause of your problems. So don't be afraid to request that your MD set up an appt with a Neuropsychiatrist.

EMG's, EEG's, Sleep Studies, are also good tests to have done. They show brain waves (or slowed response in brain waves) and can also prove that there are problems that may not show up on CT's or MRI's.

You will need several friends, bosses, co-workers or family members to write letters on your behalf that state what they have seen in the way of changes. If you have a close friend that you work with--and they can state that you used to "run the office", be able to "problem solve" or "multi-task"--and now aren't able to get the paper to the desk before you forget what you were trying to do-- have them write it down.

If you've got a good friend that can attest to the fact that you can hardly carry on an intelligent conversation--or finish your sentences when you're talking--ask them to write it down. (SSDI will ask for 2 or 3 references).

If you can't comprehend what you read--or if you have to reread everything multiple times before you understand it-- write it down. If you find that filling out the form to apply for your SSDI is too hard to do--so you have someone helping you-- let them know that.

These are all things that will help you get approved for your SSDI.

There are articles in our LINKS section that relate to this topic. Here is the address:

http://groups.yahoo.com/group/Neurosarcoidosis

Go to the LINKS and check out the folders and different sites. Also in the ARCHIVES you will find many posts about disability and SSDI, SSI as well as the tests and exams that should be done.

Please let us know if we can help you further.

Sincerely,

Tracie

NS Co-owner/moderator