disability

[Guest guest]

guess alot of us " old hippies " have lyme...and the word of those songs

meen

differant things to us know......in my younger days i paid alot of

money for

a foggy feeling ....now i get it for nothing.....besides music life has

a

differant meaning for me

Reid, You are lucky to have your wife, i know its not always perfect,

but she is there and takes a lot of (financial) pressure off you. I am

alone, and have to take care of myself financialy and medically, my

kids are grown and have there own lives and i dont want to be a burden.

I am on LTD and have to get back to work by next march or i will be

terminated. With my monthly ltd payment, i just make ends meet. but

this " salary " will never increase, and i am scared to death about my

future. I try to understand why this has happened to me, there must be

a reason, but damn if i can find one. I do believe everything happens

for a reason, and all life changes are for the best. guess its just

going to take me a little longer to find the best in this.

roe

__________________________________________________

[Guest guest]

I agree.. I won't want to be accepted for mental illness when it is

> caused by

> lyme disease, especially when it will interfere with the long term

thanks

I have an appointment with a phycologist on Thursday june 29th. Any

advice you guys can give me would be welcome. i have a habit of saying

the wrong thing and putting my foot in my mouth. SSD ordered the

appointment. I talked to this Dr. today to make the appointment and I

am already intimidated. I guess they are doing this because i am on

paxil and have memory problems. I dont know how to convince this

doctor that i am not depressed because of depression, but because of

lyme. should i bring him literature or would that make him more

alienated, I hate this disease so much. i dont have the energy to

educate these people who dont want to know and would rather hide in the

closet with Steere.

thanks for any input you can give.

roe

__________________________________________________

[Guest guest]

an appointment with their physc is normal.....because of nuero phycoligical

problems with lyme( damn i use to be a good speller.....) when i visited

theirs i was honest...and having a really foggy day.......could not remember

the vice pres. name among other things......i was given a 7 whatever that

means normal people are like 100 so i was virtually non functional.......due

to lyme fog.....

Reid

[Guest guest]

roe u are depressed due to depression......u have a disease that has changed

ur whole life and now u can no longer function and do things that u use

to.....that alone is depressing ..add in pain and fatigue.....and we do get

suicidal......and some times homicidal......believe me i have been dx'ed

both.....all due to my lyme.....just as joint pain and fatigue are symtoms of

lyme...so is depression....do not try to " down play it " to their doc......it

is part of who u are and ur disease......between our mental and physical

disabilties...that is what qualifies us for ssd.....like fran says....it is

what keeps us from funtioning or working that they worry about...

Reid

[Guest guest]

<<<< I have an appointment with a phycologist on Thursday june 29th. Any

advice you guys can give me would be welcome. >>>

Is it someone that you got to pick, or did SSD pick him/her for you? Is it

a one-time only assessment, where this psychologist works FOR SSD, or do

you know?

L'beth

[Guest guest]

Roe,

Do bring medical literature documenting the neuropsychiatric symptoms of lyme

disease, including depression and short term memory.. Doctors may not listen

to patients, especially those they are to evaluate but they will listen to

medical research studies printed by their peers.There may be a small chance

of alienating this doctor, but I would imagine the majority of the doctors

would be interested, especially if they are not familiar with the symptoms of

lyme disease.

Also I am wondering if it would be benefical to document on a chart the

fluctuation of your psychological symptoms along with other lyme symptoms so

hopefully there would be a clear correlation between the neuropsychiatric

symptoms and other lyme symptoms. For me, usually whenever I feel foggy, I am

also in tremendous pain, profound fatigue, and experiencing balance problems,

etc. As a scientiest, I am interested in reading raw data. Just a thought.

good luck,

elizabet

In a message dated 6/16/00 11:52:16 AM Eastern Daylight Time,

roe0325@... writes:

<< have memory problems. I dont know how to convince this

doctor that i am not depressed because of depression, but because of

lyme. should i bring him literature or would that make him more

alienated, I hate this disease so much. i dont have the energy to

educate these people who dont want to know and would rather hide in the

closet with Steere. >>

[Guest guest]

> Is it someone that you got to pick, or did SSD pick him/her for you?

> Is it

> a one-time only assessment, where this psychologist works FOR SSD, or

> do

> you know?

>

> L'beth, it is a one time thing and SSD chose him. I dont even like

his voice (condisending)sp? I am going to call SSD on Monday and talk

to the woman who called me last week about making the appointment. I

want to know why they want me to see a phycologist. last thing i need

is a so called specialist telling me its all in my head. the only

thing in my head are spirokeets!!

roe

__________________________________________________

[Guest guest]

reid, i was sent to a psychiatrist by them earlier this year. she was

great, she knew someone with lyme and really understood the problems i

had. but the questions she asked to test my memory were stupid. i can

remember what happened 20 years ago - schools i went to and stuff and

she asked me to multiply 8X8, i knew that too. I am not sure they

understand the memory loss that we have. i am not sure i understand.

Its like when I reply to a message and hit the reply key-I immediately

forget who i am responding to but i can remember my first job and my

public school, but dont ask me what day it is even though i just

checked 3 times. I wonder why they are now sending me to a

psychologist.

i dont get it.

roe

--- rmcmur3194@... wrote:

> an appointment with their physc is normal.....because of nuero

> phycoligical

> problems with lyme( damn i use to be a good speller.....) when i

> visited

> theirs i was honest...and having a really foggy day.......could not

> remember

> the vice pres. name among other things......i was given a 7 whatever

> that

> means normal people are like 100 so i was virtually non

> functional.......due

> to lyme fog.....

> Reid

>

__________________________________________________

[Guest guest]

rmcmur3194@--- aol.com wrote:

> roe u are depressed due to depression......u have a disease that has

> changed

> ur whole life and now u can no

thanks Ried

roe

__________________________________________________

[Guest guest]

Toddnagano@... ref Social Security Disability:

I have been through this effort, not a fun thing.....sort of like PA.

The key to S.S. Disability is documented proof that you cannot do any type of

work. You need all the doctors to cooperate and provide all the info that

they may have about you. You and the medical documents must show that you

cannot work, not just in the field that you may have worked all your life.

When you get to the second turn down you have gone through the State offices

that do the work for Social Security. The hearing is the first time that you

will be talking to/with a person that works for SS (no pun intended) and the

first person that can and will make a decision. This " administrative judge "

will listen to you and anyone you bring with you. If you do not have a

lawyer that is a specialist in SS benefits, get on ASAP. You need that type

of experience to talk the language that will ring the bells for the " judge " .

This is not a court, but you really don't have much of a chance without

special help. I was lucky, my company, or rather the insurance company

provided a lawyer who took care of the details. All I did was answer a few

questions. My documentation also reflected chronic fatigue, PA and OA plus

all the meds known to man. The documented chronic fatigue seemed to be one

of the most critical elements. I was approved at almost two years to the day

that I had to leave my job.

By the way, the SS will backdate the disability award to six months after you

leave work. In my case that was eighteen months of payments, all of which I

had to give back to the insurance company. Now you know why they were so

helpful. If you have disability insurance check out those details. SS

disability payments will be the same as if you were retiring at 65 and

drawing normal SS based on you working record. When you turn 65 the name

changes but you still get the same dollar amount. If you remain approved for

SS disability(they review the situation every so often at their choice) you

will also get Medicare after 29 months of disability.

You may contact me at b66f@... should you have specific questions that

might just bore the group. Hope this helps, can't say it strong enough, get

an SS disability lawyer if you don't have one. I did not like it, but it

worked. Maybe just like EPO.

Bob in VA

[Guest guest]

I've applied and been turned down twice also. The last rejection included

some illnesses I never even claimed to have. Presently I'm waiting for a

hearing by a judge. I was told the hardest part is my age (48), after 50 the

standard is if you are able to do the work you are trained for, before 50

it's if you are able to do any gainful employment. I will really need

Medicare to cover after my regular health insurance reaches its maximum,

since it won't last until 65. I did get an attorney to represent me in the

hearing, at that point it will all depend on the medical records he says. My

Doctor says it's all there, I just worry. The most frustrating comment is

" you don't look so bad. " Wouldn't you just love to give them the pain?

Somewhere?

Ilene

[Guest guest]

<< -- In egroups, toddnagano@a... wrote:

> Has anyone in the group applied for social security disability and

gotten it,

> any information would be appreciated. I was diagnosed with PA two

years ago,

> and so far none of the medications I have taken have helped, am

currently

> taking enbrel 2 x weekly, plus some others, applied for dis. have

been turned

> down twice, have a hearing next month.

>>

I have been an avid reader of the board for many months but don't often post.

I would like to tell everyone that I applied for SS disability in February

of this year and I just heard yesterday that I have been approved. I know it

was because my doctor was very diligent in documenting my pain, number of

affected joints....I can hardly believe I was approved on my first try, I

know that almost never happens, but it might be of hope for others to hear

that it CAN be done. I have a question for everyone on dis.....were you able

to get medicaid as a result of your SS approval? I have no insurance at all

and the prescriptions and doctors fees, labs etc are astronomical.

Thanks

[Guest guest]

,

Are you from the USA? I think the rules about disability bennefits are

probibly different in each country. Hard to get everywhere, I'm sure, but it

would help to know where people live to know who can give advise best. I was

just wondering.

Though I haven't applied for it yet, I hear it is really hard to get in the

USA and that people should be prepared to be denied.

Amy

[Guest guest]

> Has anyone in the group applied for social security disability and

gotten it,

> any information would be appreciated. I was diagnosed with PA two

years ago,

> and so far none of the medications I have taken have helped, am

currently

> taking enbrel 2 x weekly, plus some others, applied for dis. have

been turned

> down twice, have a hearing next month.

I applied for dis in Nov. after my GP told me to. At first they

mucked me around and sent a " doctor " to see me , for what good he

was. He asked me stupid questions about bathing my kids ( I couldn't

get up the stairs to use the loo so how was i bathing 4 kids ?)

then he asked who changed the bedding ( again..i could hardly get in

and out of bed ) and a load more stupid questions.

Then he asked to see my feet ( you can't miss them ) and my knees

(They look like someone has stuffed melons under the skin) Then he

wanted me to walk round the room, I tried ,and got half way, he

twisted his face and asked me to try without my stick !!! By that

time Husband was vvvv annoyed and asked if it was nessesery and the

doctor looked straight past my husband and asked me to run as fast as

I could, up the stairs.

They refused my claim, I appealled and I sent letters from my GP and

Doctor at the hospital, I waited until the begining of May and got a

letter saying they would give it to me for 1 year and review it at

the end of the year.

I was helped by our local advice centre and they told me I would have

problems with them (DLA) because I am young (27)

Keep on at them don't ever give up...Get details of your problems

(from neening help on and off the loo ,in and out the

bath/shower,cutting your food up before you eat it, and tell the how

bad the pain is) get it all down on paper from every doc you see

don't put on a brave face or tell them you manage with the pain, tell

them what you feel at 2 in the morning when you can't get to sleep

for the pain but you can't get up for your painkillers, DON'T sugar

coat it , just remember you should be getting help because you need it

Love x

[Guest guest]

Hi,

You didn't sign your name so I couldn't put who I am talking to

(toddagano).

I am on Social Security Disability and it took me 4 1/2 years to get it.

First of all, do you have a lawyer to go with you to the hearing?

Because if you get a judge like I did, he/she might hammer you. Most of

these judges are retired and I just happened to get a brutal one. There

will also be a Dr. there that knows nothing of you except from what

he/she read from your records (the Dr. was the one that aced it for me.

I had a good one that stood up against the judge). I feel that if it

were up to the judge, I would have never gotten it. But the Dr. showed

and proved it to him in the Social Security Law Book where I qualified.

Then there will be someone from (now I can't remember what Department

she was from) but she/he is there to ask you about your job. What you

did, how long you were there, how long can you sit, stand, all kinds of

questions. I had one that I guess was suppose to intimidate me. She

was in a wheelchair and was working with her disability.

For me it was a humiliating experience and feel for anyone that has to

go through it.

If you don't have a lawyer, my suggestion is to get one that specializes

in Social Security Disability. You only have a month so I would start

looking if you don't have one. I found mine in the phone book or like

Binder and Binder advertises on t.v.

In my opinion, I would not go in alone. You really need to know the

Social Security Laws to challenge these people. If you do decide to do

it alone be sure to have ALL your medical records with you and know your

dates and hospital stays, operations, etc., etc., etc.

If you do go with a lawyer they can only take 25% or a maximum of $4000

of your back settlement (the past years you have been waiting).

Naturally, since mine took 4 1/2 years I paid the $4000. But it was

well worth it. My lawyer was not the best, but I did not go it alone.

I live in CA and do not know where you are from so you might just luck

out and have an easy time of it, and I surely hope you do.

I hope all goes well for you and wish you SO much luck. It is a tough

road to disability.

Angera

p.s. You may email me privately if you wish to ask me any further

questions you might have. I will be glad to help you in anyway I can.

caljersey@...

[Guest guest]

,

Great news, it is a tough road but you deserve the SS disability and as you

say it can be done. You should get a large dump of info from SS. In all

that stuff it states that you will have Medicare benefits 24 months after the

start date of your disability payments, or in other words Medicare starts 29

months after the date that SS says your disability started. You will also

have the option of taking parts A and B of Medicare. For folks with our

problems it is wise to take both. The bad news is that right now Medicare

does not cover most Meds and Rx. If you join a Medicare Managed Care Program

then you will have the prescriptions covered. Look close at the letter that

states you were approved and all other info that SS sends you. That approval

letter sets the base dates for all the above issues. SS will also backdate

your disability, so you may get a lump sum payment. Please note that all SS

disability payments are taxable, believe it or not! If you total income from

all sources exceeds a certain level, then you will pay income tax on the SS

payments. So keep your eye out for the IRS.

Hope this helps. You can also go to www.medicare.gov and find most of the

info you need. Let me know if I can be of any help. I have been through all

this stuff, take it a day at a time and keep copies of anything that you get

from SS, ask questions and use the web.

Bob in VA

[Guest guest]

Hi Todd and Bob in VA,

Although I had double hip and double knee replacement

surgeries in 1998, I did not apply for SS disability coverage, because

fortunately, when my sick leave ran out I was age 56 with over 31

years experience in my federal government job in the Commerce

Dept. Thus, I met the qualifications to get a regular civil service

federal retirement. Also, the personnel experts at Commerce told

me that my regular pension would be about the same amount as a

pension from SS. Sincerely, Bill in DC

[Guest guest]

,

I am on disability due to other disabilities not hte PA. Yes I get

medicaid. It all depends on how much your disability benefits are. You might

want to check out your local dept of human services office and see about

applying for medicaid. There are instances where the medical needs are so

great that you qualify. It all varies from state to state and each state

has their own income restrictions for Medicaid.

Hope this helps.....I am on Medicare also.

LeAnn & Blossom

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator

www.heartbandits.com

[Guest guest]

Thanks everyone for the responses to information on SS disability. I also

had private dis insurance so that has kept me afloat financially, also

because i honestly thought i would be turned down several times for SS. I am

also a nurse and a veteran so maybe that had some pull in the decision, but

my doctor also changed my diagnosis from PA to RA to get me into a research

study for AMGEN with a drug called Kineret (sp?). It is a derivitive of the

bacteria that causes E coli and it is a TNF drug. I will let you know if it

helps after a few months. Thanks again

[Guest guest]

Ilene,

I hear you!!! When I got my first rejection letter (I was 46 at the

time) the paragraph said " You have been declined for SSDI due to your

age, your education and type of work I was doing. I was a secretary. I

told my husband, " what do I have to be? Old, stupid and on welfare? " I

know that sounds horrible, but it was how I felt and still do.

You are also reviewed anywhere from 3 to 5 years after you do get SSDI

and I am starting to worry about it already because of the horrible way

they treat you. Like low class nothings.

One more thing. Once you get disability, Medicare comes along

automatically. I forget how long it is, but the time you must wait to

get it is counted in when you first applied for the disability. So if

you are 2 1/2 years into the process, you will have Medicare right away.

Good luck to you too. Glad you have an attorney behind you.

Angera

[Guest guest]

,

You will get Medicare A & B which is Drs. visits, lab work, testing and

the other is hospitalization. It does not cover medications

unfortunately. You might want to look into an insurance supplement just

for medications. You might have a co-payment, but it would be better

than having to pay for all your medications.

Angera

[Guest guest]

Bill,

Not sure you got good advice. SS Disability has nothing to do with any other

pensions or retirements. The main question is did you pay Social Security

Tax based on your federal work? If you did then you should have applied for

SS disability. I retired with 27 years in the US Army. I was covered (paid

into) by social security for the total 27 years. When I got SS disability it

was another payment, nothing else changed. You do not give up other pensions

when or if you get SS disability. You may want to look into that issue if

you cannot work due to PA or anything else for that matter.

Take care, may see you at the NPF meeting in Oct. Bob VA

[Guest guest]

Hi Bob in VA,

I did not pay into the SS tax fund when I was working for the federal

government. This means that my federal job does not qualify me for

SS benefits when I reach age 67.

I believe I was physically unable to work before I had major surgery

in 1998; but since surgery, I feel much better and I was able to earn

(through tests) a income tax preparer job at H & RBlock this year.

P. S. I hope to see you at the NPF meeting in DC during October.

Sincerely, Bill

in DC

[Guest guest]

Bill,

Just a short note to add to Bob VA's note.

I am also on Disability Retirement and really lucky that the amount I

get is close to what I get for SSDI which brought my total income within

$300 less a month than I made while working. I say a prayer each and

every night for that one.

I worked for the State of CA in a school district and was lucky that we

had such a good pension plan. I got full pension by going the

disability way. If I just retired I would have only gotten what I put

into it. If I retired and decided to take the money put in, I would

have gotten just what I put into it. By retiring with a disability I

got what the District contributed also.

Angera

[Guest guest]

Dear All:

As per the postings on today's list, everyone should send, to their

Congress person and Senator, that HCV should be approved as a disaility

condition, just like AIDs, and encourage any one you know to do the

same. Also, I would encourage every and any one, whether it applies to

them now or not, that for the period that HCV causes a disability, which

may even be just during therapy, but, for many others it could be very

long, VICTIMS should be approved for Social Security Disability

Benefits. If everyone writes, and everyone they know writes, especially

during an election year, it might help those who need it, to get it.

If any one has had an application, been denied, or similar

experience, this is the time to make the plight known to those that can

change the laws and regulations that affect all of us.

Here are some sites for names and addresses: Marty

http://www.visi.com/juan/congress/

http://www.webslingerz.com/jhoffman/congress-email.html