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Debra - I do get my test results when I remember to do it. It just makes it

easier when I am talking to the dr. if I have a copy to look at. But, the

records I am talking about that I can't get are the ones sent to SSI by

their doctors in their evaluation of my case. They claim they are their

property, not mine and I am not entitled to them. Jan H

>

> Jan everytime you see your doctor, get a copy of their notes and any

> tests results. Also ask for copies of any scans or xrays at the time

> they are performed. I always do this and sometimes it raises eyebrows

> at the doctors offices, etc, but better eyebrows than not having your

> own set of records. Remember these are your records and you are

> entitled to them. God bless, Debra

> > > I've heard that they have to approve you the first time if you

> have

> > > documented proof that you have a disease or sickness that is on

> their list.

> > >

> > > For cirrhosis:

> > > For this condition to be severe enough to meet the Social Security

> > > Administration's listing the claimant must have:

> > > Esophageal varices with documents indicating massive hemorrhage;

> OR

> > > Performance of a shunt operation for esophageal varices; OR

> > > Serum total bilirubin of 2.5 mg or greater that persists on

> repeated

> > > examinations for at least five months; OR

> > > Ascites, recurrent for at least 5 months demonstrated by abdominal

> > > paracentesis; OR

> > > Hepatic encephalopathy; OR

> > > Confirmation of chronic liver disease by liver biopsy.

> > >

> > > Here's the social security website.

> > > http://www.ssa.gov/dibplan/dqualify5.htm

> > >

> > >

> > > __________________________________________________

> > >

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No need to think about spies. That's how LOTS of things work: Turn 'em down

and maybe they'll go away or run out of time or money to hire lawyers . . .

or die and be no more trouble! [Not my intention to be dreary here.]

I've worked at places where the first pay period's salary was held back for

when you left and people who asked for it were told they already got it.

Only the persistent ones DID get it. This is a well-known high-volume retail

store. They also put returned damaged goods straight back on the shelf,

knowing that sooner or later someone won't return it. They also don't have

sales items pogrammed into the computers so the buyers don't know they're

paying full price -- when they came for the special price.

There are lots of ways to cheat and delay and in general give poor service.

This is only one of them.

That's why caveat emptor is important even when there are guarantees!

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

as equals. --Sir Winston Churchill

Re: Re: SSDI

I hope SSDI and SSI don't have spies here to see what I am about to say. It

has been said to me that it doesn't matter how sick you are, only about 20%

of applicants are approved the first time. And of the remaining 80%, only

20% are approved the second time, the first appeal hearing. It is their

way of keeping down the costs. If they tell you you aren't sick enough,

maybe you won't appeal, and they won't have to pay you. And, many people do

not appeal. I would be interested in finding out how many people are

actually approved who have appealed twice and reached the third stage. I

would imagine it is rather high. I just hope you find out in time to be

able to keep your house Bob. It took 6 months for them to deny me. Jan H

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4:36 AM

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People and institutions DO get carried away by forms and such. I admire your

last line, MaC!

Another thing you don't have to do is give SSN of your children to public

schools -- but they won't tell you that! And they will tell you they need it

so they can TRACK your child!

I've had fun when people at the cash register ask me my name and address so

they can send me a catalog. I give them " Gloria Burgeinschineswhaller " or

" Loretta McGordonestenfallenburgher " or whatever I think of at the moment.

Sis-in-law, her small daughter, my daughter and I went to a home-show. Huge,

lots of booths, every one of which wanted us to fill out name and address

for a drawing. Most of them were polite when we said No thanks. But one

place was so insistent that I told him there was no way we would fill out

the sheet because we were famous and didn't want to be accosted. So help me,

the rest of the time we were in that area they were putting people up to

look us over and see who we were. Famous as we are, they never did find out!

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

as equals. --Sir Winston Churchill

Re: Re: SSDI

Social Security is a Government Agency, which by the way, is owned by you.

You can request their numbers under the Freedom of Information Act.

They also have to provide their statistical information. If you request it

in writing from them you will get it.

On a side note, I do notice that people that work at SS do have personal

preferences. For instance, when I paid well over $700 to apply and get my

wifes VISA to come back from Japan to California with me, part of that whole

process was to prove I was married.

When I entered LAX and went through customs, me being in the military, had

my dandy checklist. As the immigration officer was helping me process, I

asked him about the Social Security Card, since my checklist said that it

would be applied for upon arrival. He told me just to go to my local SSN

office, so I did.

Before I went there I asked what documents I needed. None of which was a

marriage certificate. So when I arrived, I was greeted by an obviously

overworked tired of dealing with costumers employee. When I turned in my

(pre-filled out paperwork, given by the INS) she looked at my wife, who was

Korean, and asked " are you married? " (I guess unmarried people go there all

the time)

I answered " yes " . She shuffled some paperwork, took my application in the

back and came back and asked for our marriage certificate. I asked why I

needed that? She stated she " couldn't give her a SSN card without it. " So I

had to show her paperwork from the SS website that showed what I needed to

bring and I even called and they said I did not need a marriage certificate

since I had my VISA paperwork. This went on an on, until I started getting

mad.

I kind of raised my voice and explained that if all of our paperwork was

good to get a VISA (which took 6 months) and that INS gave her a green card

and let her into the country etc, and I HAD to prove that we were married to

do this, then I didn't need to PROVE it to her. But be the nice kind,

courteous American that I am, I thought I would prove a point and show her

our proud marriage certificate . Our marriage certificate was in Japanese,

since we were married on the lovely Island of Okinawa. You should have seen

the look on her face when she saw it! (Beautiful certificate by the way. The

Japanese go all out.) She left and came back with our SSN card.

The point of the story is to never give in to Government Beaurocracy and to

always remember the Government is owned by you. It's purpose is to serve

you. For some who are caught up in the beaurocracy, they forget that. But

remember, it's not the governments job to remind you, but you, to remind

them of their responsibilities.

MaC

P.S.,

I proudly serve and If I could do it for free I would.

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4:36 AM

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> Another thing you don't have to do is give SSN of your children to public

> schools -- but they won't tell you that! And they will tell you they need

> it

> so they can TRACK your child!

Yes, that is part of No Child Left Behind is that the schools have to report

the MALE students and their SSN their senior year to the draft board.

But I believe you DO leally have to give the child's SSN...to get them

enrolled in school. You take it and they make a photostatic copy of it to

put in the child's cumulative folder records. That is one way they make it

harder to kidnap a child, whether it is the noncustodial parent or a

stranger...you have to have certain records to enroll them in school.

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And I wonder how much is due to the lawyers' lobby. There are ways and ways

of doing in the individual as other elements of the population make hay.

Example: When I had my second by-pass, my daughter asked for leave from

work. Denied. She was told their practice was for her to quit and they'd

guarantee to hire her back. We had 5 small children at home (son's 4 plus

hers) and he was working in another state with horrid bills from a bad bad

divorce situation so little support from him for over a year. We applied for

Food Stamps and AFDC to take us through my convalescence. We were denied

because daughter had quit her job. The FMLA was in force and we went to

Legal Aid. Months passed. When we finally got the Food Stamps and I went to

pick them up, the lady smirked, " You'll have a FINE Thanksgiving with THAT! "

I told her it didn't help with the utilities being turned off and

re-connection fees and late charges and that she didn't quite understand the

situation. I was very nice. Really.

We call it the Line One Syndrome: Line One says no Food Stamps if you quit a

job. Guidelines for employee's says not to go beyond Line One. Can't get to

line 2 which says " unless there is illness at home " with Line Three saying,

" unless there are small children not yet in school. " Our eldest was in

kindergarten.

I fault the lawyer for not asking to see the FMLA policy which the employer

claimed to have AND not having interviews with employees who'd used it. Talk

about hurting!

May your cases be settled so you can be settled, too!

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

as equals. --Sir Winston Churchill

Re: Re: SSDI

It took to the third stage to be approved, but it was with a lawyer's

help. We considered getting the lawyer after the 1st refusal, but with the

statistics for approval so low for the second appeal, we thought we would

save the big guns for last.

And just in the nick of time...in the 16 months of not working we went

through my 401K of $12,000.00, a loan at 10% of $10,000.00 and an income tax

refund of $5,000.00, in addition to maxxing out a half dozen credit cards

We were ready to start eating PBJs at every meal when we finally got the

approval letter. Even at that,we got a monthly check rather quickly, but

took another 3 1/2 months to get the back pay! Now we have enough to live

on, but not enough to pay back the loans AND medical bills.

I wonder how much of the success is making it to the 3rd level and how much

has to do with you having a lawyer. I am amazed at much differently you are

treated in court when you are represented by council as opposed to when you

are there by yourself!

Re: Re: SSDI

I hope SSDI and SSI don't have spies here to see what I am about to say.

It

has been said to me that it doesn't matter how sick you are, only about

20%

of applicants are approved the first time. And of the remaining 80%, only

20% are approved the second time, the first appeal hearing. It is their

way of keeping down the costs. If they tell you you aren't sick enough,

maybe you won't appeal, and they won't have to pay you. And, many people

do

not appeal. I would be interested in finding out how many people are

actually approved who have appealed twice and reached the third stage. I

would imagine it is rather high. I just hope you find out in time to be

able to keep your house Bob. It took 6 months for them to deny me. Jan H

>

> No IT ISN'T hopeless !! I have fibromyalgia, there are NO TESTS to prove

> it. Just my word & my docs words. I WON!!!

> The ' impartial' SSDI doc wouldnt even say the dreaded FIBROMYALGIA

word,

> my lawyer tried to make him LOL!

> I WON!

> DONT GIVE UP HOPE, KEEP TRYING!! You all have test reports & PROOF that

> your sick!

> love

> tilly

>

> fcpfirefly <fcpfirefly@... <fcpfirefly%40yahoo.com>> wrote:

> My god!!!!! it's hopeless..

>

>

> >

> > >

> >

> > > > Today is the first time I had to take off from work because I

> >

> > am

> >

> > >

> >

> > > just

> >

> > >

> >

> > > > too exhausted to concentrate or make my appearances in court.

> >

> > >

> >

> > > >

> >

> > >

> >

> > > > I was back in court the day after I got out of the hospital (8

> >

> > >

> >

> > > pints of

> >

> > >

> >

> > > > blood had to be transfused) and, yet, the only strenuous thing

> I

> >

> > >

> >

> > > did

> >

> > >

> >

> > > > this week was a two-day trial on Monday and Tuesday.

> >

> > >

> >

> > > >

> >

> > >

> >

> > > > The part of end stage cirrhosis (aside from the affects on

> >

> > family)

> >

> > >

> >

> > > that

> >

> > >

> >

> > > > I hate most, is; that I can now feel each step downhill in my

> >

> > >

> >

> > > health.

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com

> >

> > >

> >

> > > > web address:

> >

> > >

> >

> > > > http://groups. yahoo.com/ group/livercirrh osissupport/

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

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Think about this, folks. This is part of " tort reform " that is floating

around today.

If you are in such a situation and it is that you've been damaged by someone

who has responsibility, you'd have one heck of a time being heard because of

the limitations of making the institution that damaged you responsible

through a lawsuit.

I know that doesn't apply here, but that's the purpose of " tort reform. " It

isn't to clear the courts of drivel, but to keep individuals from suing for

real damages and keeps the non-accountable institutions -- usually

corporations -- from having to pay.

This isn't prepared and I'm sure I'm not making myself clear, but maybe you

catch on anyway.

They really do think enough will die to keep down the expenses! It is NOT

humane!

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

as equals. --Sir Winston Churchill

Re: Re: SSDI

I wonder how many just die in the mean time. Ardis's doctor said in her

paperwork that she would be disabled until she recieved a liver transplant,

but that the vast majority of liver transplant candidates die before

recieving a liver. That she needed the ssdi in order to get a

transplant.(medicare, in other words. They denied her anyway. But her appeal

was lightening fast. She had a lawyer who was to take 25% of her back award.

He went into the appeal hearing, and humiliated the SSDI doctor, and the

judge said this in his ruling. (that the SSDI doctor was sorely unprepared

to defend the governments position.) She won nearly $12,000.

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4:36 AM

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Ahh, so now I know how I got mine right off!

Only two problems. 1) I didn't have an interview that I know of -- just sent

in a LONG form.

2) I'm plain as a dust mop.

Also, Jan, I'm the opposite of you. Casual is my cup o' tea! NO high heels

for me! BTDT and don't want to wear them. I have worn them and still can,

but as for preference, I'm happy to give up panty hose and high heels and

girdles and make-up (never bothered much with that either) and just say

wysiwyg! I don't even like to " fix " my hair! I want to shake my head when I

exit the shower and go from there . . .

It's a difference in something. When I put on make-up, it looks like I've

put on make-up; it doesn't enhance anything! I guess I'm still a tomboy at

heart! Once I had runners in my legs, the pants suit me fine.

I have several friends who are always perfectly groomed and quite

attractive. I admire their interest in it, but it just isn't in me. Clean is

good.

Stay pretty!

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

as equals. --Sir Winston Churchill

Re: Re: SSDI

Well it seems to me that you have the right to see the records, but the

government can and does whatever it wants. My friend Keesha (who has a link

on my blog,chiari malformation blog) was examined by a chemical burn

specialist. The man spent half of the exam lecturing her about how her name

was inapropriate because she is not african american, and the other half

explaining how it is of utmost importance for a woman to be attractive in

order to be a good wife, and how his wife is attractive. He asked her what

exactly is chiari malformation, and she just talked to him in a polite

soothing tone, and explained it to him. And he approved her case

immediately, and it was most likely because she is attractive and he finds

that to be the most important pre requisite of women. She is caucasion and

American indian. She is very attractive, and I'll bet if she was ugly, she

would be in the appeal process right now.

Sent via BlackBerry from T-Mobile

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4:36 AM

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Then why don't you remind other people on the list as well, I was responding to

's post...so why did " I " get the reminder and not me. And I got not ONE

reprimand from you but 2!!! Quote: But just want to send a

reminder about being on topic. Please keep in mind this group is about

cirrhosis.

Have you been forgetting to take your Lactulose? Check the past 2 days worth of

posts and see how many...including your own stayed on topic.

I guess because I am not a member of your little social club....I don't know

what the membership requirements are but I guess this is like a high school

clique.

Sorry I don't have cirrhosis along with you, but my husband does, along with

stage IV Colon Cancer, and diabetes. My mother died in July a horrifying death

and I am not over that yet.

My granddaughter was taken from me October 1st.

My husband's cirrhosis has worsened in the past 6 weeks in that he now has

encephalopathy. WHEN he dies I don't even have the means to cremate him, from

loss of his income and he has no life insurance.

I have taken a 3 month leave of absence for my job (teaching) to try to deal

with all this pressure I am under. I might need some support, and I like keeping

up with what to expect from this diseases,other than the fact that he will

probably be dead before any of you because he has 3 serious diseases, none of

which were detected until they were advanced.

Oh well, I am pretty much invisible on this list anyway....Other than , I

don't think a single person has responded to one of my posts yet....EXCEPT for

THIS " reprimand " . I guess if you are a Debra or a Bob or a you can talk

about sleep apnea, lipomas, the kinds of fruits and vegetables they like, ( and

by the way I am pleased to know that you said

" LOL! I'm one of the strange ones that loves vegetables. I'll eat all

kinds.MaC " and that you love cabbage too. Fried cabbage is great. I even like

Artichokes and cauliflower and my favorite fruit is a tomato. "

We have posts about how they like (or don't like their Brussel Sprouts cooked,

what happened on the NASH group, mammograms on " little bitty man boobs " , going

to GYNs, losing our youth....these are just a few of the posts I perused just

now, all either yesterday or today.

None of which were sent your little, " Just a reminder,

This group is about cirrhosis. "

got blown off for not posting at the top of the page, and I did for not

keeping my comments on topic.

Guess I can go elsewhere and leave MaC, Debra, ,

Why don't you just have a closed membership and you and Debra and and Bob

and just have a mutual admiration society for each other be a support group just

for your little select groups.

People in this group do not cut and paste, one person will send a dozen posts in

a row,they keep hitting reply until the posts are tremendously long, and no one

says a word.

And " I " get reprimanded because I was trying to be helpful in answering 's

question about school records needing or not needing SSN's.

Sorrrry!

You sure know how to make someone feel welcomed!

Re: SSDI

Just a reminder,

This group is about cirrhosis.

MaC

>

> > Another thing you don't have to do is give SSN of your children to

public

> > schools -- but they won't tell you that! And they will tell you

they need

> > it

> > so they can TRACK your child!

> Yes, that is part of No Child Left Behind is that the schools have

to report

> the MALE students and their SSN their senior year to the draft board.

> But I believe you DO leally have to give the child's SSN...to get them

> enrolled in school. You take it and they make a photostatic copy of

it to

> put in the child's cumulative folder records. That is one way they

make it

> harder to kidnap a child, whether it is the noncustodial parent or a

> stranger...you have to have certain records to enroll them in school.

>

>

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

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Version: 7.5.503 / Virus Database: 269.15.22/1111 - Release Date: 11/5/2007

4:36 AM

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Boy, I guess you don't live in Minnesota. A lot of people come here jsut so they

can get help.

Colleen

Bracewell wrote:

And I wonder how much is due to the lawyers' lobby. There are ways and ways

of doing in the individual as other elements of the population make hay.

Example: When I had my second by-pass, my daughter asked for leave from

work. Denied. She was told their practice was for her to quit and they'd

guarantee to hire her back. We had 5 small children at home (son's 4 plus

hers) and he was working in another state with horrid bills from a bad bad

divorce situation so little support from him for over a year. We applied for

Food Stamps and AFDC to take us through my convalescence. We were denied

because daughter had quit her job. The FMLA was in force and we went to

Legal Aid. Months passed. When we finally got the Food Stamps and I went to

pick them up, the lady smirked, " You'll have a FINE Thanksgiving with THAT! "

I told her it didn't help with the utilities being turned off and

re-connection fees and late charges and that she didn't quite understand the

situation. I was very nice. Really.

We call it the Line One Syndrome: Line One says no Food Stamps if you quit a

job. Guidelines for employee's says not to go beyond Line One. Can't get to

line 2 which says " unless there is illness at home " with Line Three saying,

" unless there are small children not yet in school. " Our eldest was in

kindergarten.

I fault the lawyer for not asking to see the FMLA policy which the employer

claimed to have AND not having interviews with employees who'd used it. Talk

about hurting!

May your cases be settled so you can be settled, too!

I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

as equals. --Sir Winston Churchill

Re: Re: SSDI

It took to the third stage to be approved, but it was with a lawyer's

help. We considered getting the lawyer after the 1st refusal, but with the

statistics for approval so low for the second appeal, we thought we would

save the big guns for last.

And just in the nick of time...in the 16 months of not working we went

through my 401K of $12,000.00, a loan at 10% of $10,000.00 and an income tax

refund of $5,000.00, in addition to maxxing out a half dozen credit cards

We were ready to start eating PBJs at every meal when we finally got the

approval letter. Even at that,we got a monthly check rather quickly, but

took another 3 1/2 months to get the back pay! Now we have enough to live

on, but not enough to pay back the loans AND medical bills.

I wonder how much of the success is making it to the 3rd level and how much

has to do with you having a lawyer. I am amazed at much differently you are

treated in court when you are represented by council as opposed to when you

are there by yourself!

Re: Re: SSDI

I hope SSDI and SSI don't have spies here to see what I am about to say.

It

has been said to me that it doesn't matter how sick you are, only about

20%

of applicants are approved the first time. And of the remaining 80%, only

20% are approved the second time, the first appeal hearing. It is their

way of keeping down the costs. If they tell you you aren't sick enough,

maybe you won't appeal, and they won't have to pay you. And, many people

do

not appeal. I would be interested in finding out how many people are

actually approved who have appealed twice and reached the third stage. I

would imagine it is rather high. I just hope you find out in time to be

able to keep your house Bob. It took 6 months for them to deny me. Jan H

>

> No IT ISN'T hopeless !! I have fibromyalgia, there are NO TESTS to prove

> it. Just my word & my docs words. I WON!!!

> The ' impartial' SSDI doc wouldnt even say the dreaded FIBROMYALGIA

word,

> my lawyer tried to make him LOL!

> I WON!

> DONT GIVE UP HOPE, KEEP TRYING!! You all have test reports & PROOF that

> your sick!

> love

> tilly

>

> fcpfirefly > wrote:

> My god!!!!! it's hopeless..

>

>

> >

> > >

> >

> > > > Today is the first time I had to take off from work because I

> >

> > am

> >

> > >

> >

> > > just

> >

> > >

> >

> > > > too exhausted to concentrate or make my appearances in court.

> >

> > >

> >

> > > >

> >

> > >

> >

> > > > I was back in court the day after I got out of the hospital (8

> >

> > >

> >

> > > pints of

> >

> > >

> >

> > > > blood had to be transfused) and, yet, the only strenuous thing

> I

> >

> > >

> >

> > > did

> >

> > >

> >

> > > > this week was a two-day trial on Monday and Tuesday.

> >

> > >

> >

> > > >

> >

> > >

> >

> > > > The part of end stage cirrhosis (aside from the affects on

> >

> > family)

> >

> > >

> >

> > > that

> >

> > >

> >

> > > > I hate most, is; that I can now feel each step downhill in my

> >

> > >

> >

> > > health.

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

> >

> > >

> >

> > > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com

> >

> > >

> >

> > > > web address:

> >

> > >

> >

> > > > http://groups. yahoo.com/ group/livercirrh osissupport/

> >

> > >

> >

> > > >

> >

> > >

> >

> > > >

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Which I might end up doing depending on when/if I reached the stage where I

need a transplant. MN is one of the states which were suggested to me, and

it is my home state. Most of my family is there. Jan H

>

> Boy, I guess you don't live in Minnesota. A lot of people come here jsut

> so they can get help.

>

> Colleen

>

>

> Bracewell <Cather39@... <Cather39%40bham.rr.com>> wrote:

> And I wonder how much is due to the lawyers' lobby. There are ways and

> ways

> of doing in the individual as other elements of the population make hay.

> Example: When I had my second by-pass, my daughter asked for leave from

> work. Denied. She was told their practice was for her to quit and they'd

> guarantee to hire her back. We had 5 small children at home (son's 4 plus

> hers) and he was working in another state with horrid bills from a bad bad

> divorce situation so little support from him for over a year. We applied

> for

> Food Stamps and AFDC to take us through my convalescence. We were denied

> because daughter had quit her job. The FMLA was in force and we went to

> Legal Aid. Months passed. When we finally got the Food Stamps and I went

> to

> pick them up, the lady smirked, " You'll have a FINE Thanksgiving with

> THAT! "

> I told her it didn't help with the utilities being turned off and

> re-connection fees and late charges and that she didn't quite understand

> the

> situation. I was very nice. Really.

> We call it the Line One Syndrome: Line One says no Food Stamps if you quit

> a

> job. Guidelines for employee's says not to go beyond Line One. Can't get

> to

> line 2 which says " unless there is illness at home " with Line Three

> saying,

> " unless there are small children not yet in school. " Our eldest was in

> kindergarten.

> I fault the lawyer for not asking to see the FMLA policy which the

> employer

> claimed to have AND not having interviews with employees who'd used it.

> Talk

> about hurting!

> May your cases be settled so you can be settled, too!

>

>

> I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

> as equals. --Sir Winston Churchill

>

> Re: Re: SSDI

>

> It took to the third stage to be approved, but it was with a lawyer's

> help. We considered getting the lawyer after the 1st refusal, but with the

> statistics for approval so low for the second appeal, we thought we would

> save the big guns for last.

>

> And just in the nick of time...in the 16 months of not working we

> went

> through my 401K of $12,000.00, a loan at 10% of $10,000.00 and an income

> tax

> refund of $5,000.00, in addition to maxxing out a half dozen credit cards

> We were ready to start eating PBJs at every meal when we finally got the

> approval letter. Even at that,we got a monthly check rather quickly, but

> took another 3 1/2 months to get the back pay! Now we have enough to live

> on, but not enough to pay back the loans AND medical bills.

>

> I wonder how much of the success is making it to the 3rd level and how

> much

> has to do with you having a lawyer. I am amazed at much differently you

> are

> treated in court when you are represented by council as opposed to when

> you

> are there by yourself!

>

>

>

> Re: Re: SSDI

>

> I hope SSDI and SSI don't have spies here to see what I am about to say.

> It

> has been said to me that it doesn't matter how sick you are, only about

> 20%

> of applicants are approved the first time. And of the remaining 80%, only

> 20% are approved the second time, the first appeal hearing. It is their

> way of keeping down the costs. If they tell you you aren't sick enough,

> maybe you won't appeal, and they won't have to pay you. And, many people

> do

> not appeal. I would be interested in finding out how many people are

> actually approved who have appealed twice and reached the third stage. I

> would imagine it is rather high. I just hope you find out in time to be

> able to keep your house Bob. It took 6 months for them to deny me. Jan H

>

>

> >

> > No IT ISN'T hopeless !! I have fibromyalgia, there are NO TESTS to prove

> > it. Just my word & my docs words. I WON!!!

> > The ' impartial' SSDI doc wouldnt even say the dreaded FIBROMYALGIA

> word,

> > my lawyer tried to make him LOL!

> > I WON!

> > DONT GIVE UP HOPE, KEEP TRYING!! You all have test reports & PROOF that

> > your sick!

> > love

> > tilly

> >

> > fcpfirefly > wrote:

> > My god!!!!! it's hopeless..

> >

> >

> > >

> > > >

> > >

> > > > > Today is the first time I had to take off from work because I

> > >

> > > am

> > >

> > > >

> > >

> > > > just

> > >

> > > >

> > >

> > > > > too exhausted to concentrate or make my appearances in court.

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > > I was back in court the day after I got out of the hospital (8

> > >

> > > >

> > >

> > > > pints of

> > >

> > > >

> > >

> > > > > blood had to be transfused) and, yet, the only strenuous thing

> > I

> > >

> > > >

> > >

> > > > did

> > >

> > > >

> > >

> > > > > this week was a two-day trial on Monday and Tuesday.

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > > The part of end stage cirrhosis (aside from the affects on

> > >

> > > family)

> > >

> > > >

> > >

> > > > that

> > >

> > > >

> > >

> > > > > I hate most, is; that I can now feel each step downhill in my

> > >

> > > >

> > >

> > > > health.

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com

> > >

> > > >

> > >

> > > > > web address:

> > >

> > > >

> > >

> > > > > http://groups. yahoo.com/ group/livercirrh osissupport/

> > >

> > > >

> > >

> > > > >

> > >

> > > >

> > >

> > > > >

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Share on other sites

Thanks Colleen.

I spent most of my day with a friend who needed someone to drive her 35

miles to the nearest hospital to pick up her son who was discharged today

after being in the hospital since Friday afternoon

He went in because of an infected sore on his leg after he fell on the

desert and really scratched himself up. He had been sent up for a cat

scan. Well, they admitted him, and also did a cat scan on the abdomen,

diagnosed with cirrhosis. He has prescriptions for lactulose and

spirolactone sp? and for librium for alcohol with drawal, nicotine patches,

oxycontin for pain, and one other I can't remember what it was. Oh, levaquin

for the infection. Four of the prescriptions cost over $400.00 and the

nicotine patches alone will be $116.00 for 10 patches

His abdomen is extremely distended to the point it is painful. They didn't

drain it but said he is full of aceties. From what I know through my own

case and research online, he is well past the stage I am in. He has been

living with him mom for 6 months, not working, and she wanted him out of the

house, now she is probably pretty well stuck with him. She is an 87 year

old woman. He is in his middle 50s. We are sure he will go back to

drinking and smoking. I have told her she can't stop him. All she can do

is let him do as he will, pray and step back. Someone suggested alanon for

her. She is very mad at him for letting this happen, she said he also was a

drug user when he was younger but went on a methadone treatment and got

clean. But, nothing was said about Hep C.

I have given her some basic info on the progression of this disease and told

her that he has little or no chance of recovery even if he does quit

drinking. We are wondering how much he should be told about his prognosis

if he doesn't already know, wondering which would make him more apt to be

willing to quit.

Can I get some feed back? Jan H

>

> Well come on home then. I'll be here to welcome you back.

>

> Colleen

>

>

> Jan Holman <janholman@... <janholman%40gmail.com>> wrote:

> Which I might end up doing depending on when/if I reached the stage where

> I

> need a transplant. MN is one of the states which were suggested to me, and

> it is my home state. Most of my family is there. Jan H

>

>

> >

> > Boy, I guess you don't live in Minnesota. A lot of people come here jsut

> > so they can get help.

> >

> > Colleen

> >

> >

> > Bracewell > wrote:

> > And I wonder how much is due to the lawyers' lobby. There are ways and

> > ways

> > of doing in the individual as other elements of the population make hay.

> > Example: When I had my second by-pass, my daughter asked for leave from

> > work. Denied. She was told their practice was for her to quit and they'd

> > guarantee to hire her back. We had 5 small children at home (son's 4

> plus

> > hers) and he was working in another state with horrid bills from a bad

> bad

> > divorce situation so little support from him for over a year. We applied

> > for

> > Food Stamps and AFDC to take us through my convalescence. We were denied

> > because daughter had quit her job. The FMLA was in force and we went to

> > Legal Aid. Months passed. When we finally got the Food Stamps and I went

> > to

> > pick them up, the lady smirked, " You'll have a FINE Thanksgiving with

> > THAT! "

> > I told her it didn't help with the utilities being turned off and

> > re-connection fees and late charges and that she didn't quite understand

> > the

> > situation. I was very nice. Really.

> > We call it the Line One Syndrome: Line One says no Food Stamps if you

> quit

> > a

> > job. Guidelines for employee's says not to go beyond Line One. Can't get

> > to

> > line 2 which says " unless there is illness at home " with Line Three

> > saying,

> > " unless there are small children not yet in school. " Our eldest was in

> > kindergarten.

> > I fault the lawyer for not asking to see the FMLA policy which the

> > employer

> > claimed to have AND not having interviews with employees who'd used it.

> > Talk

> > about hurting!

> > May your cases be settled so you can be settled, too!

> >

> >

> > I like pigs. Dogs look up to us. Cats look down on us. Pigs treat us

> > as equals. --Sir Winston Churchill

> >

> > Re: Re: SSDI

> >

> > It took to the third stage to be approved, but it was with a

> lawyer's

> > help. We considered getting the lawyer after the 1st refusal, but with

> the

> > statistics for approval so low for the second appeal, we thought we

> would

> > save the big guns for last.

> >

> > And just in the nick of time...in the 16 months of not working we

> > went

> > through my 401K of $12,000.00, a loan at 10% of $10,000.00 and an income

> > tax

> > refund of $5,000.00, in addition to maxxing out a half dozen credit

> cards

> > We were ready to start eating PBJs at every meal when we finally got the

> > approval letter. Even at that,we got a monthly check rather quickly, but

> > took another 3 1/2 months to get the back pay! Now we have enough to

> live

> > on, but not enough to pay back the loans AND medical bills.

> >

> > I wonder how much of the success is making it to the 3rd level and how

> > much

> > has to do with you having a lawyer. I am amazed at much differently you

> > are

> > treated in court when you are represented by council as opposed to when

> > you

> > are there by yourself!

> >

> >

> >

> > Re: Re: SSDI

> >

> > I hope SSDI and SSI don't have spies here to see what I am about to say.

> > It

> > has been said to me that it doesn't matter how sick you are, only about

> > 20%

> > of applicants are approved the first time. And of the remaining 80%,

> only

> > 20% are approved the second time, the first appeal hearing. It is their

> > way of keeping down the costs. If they tell you you aren't sick enough,

> > maybe you won't appeal, and they won't have to pay you. And, many people

> > do

> > not appeal. I would be interested in finding out how many people are

> > actually approved who have appealed twice and reached the third stage. I

> > would imagine it is rather high. I just hope you find out in time to be

> > able to keep your house Bob. It took 6 months for them to deny me. Jan H

> >

> >

> > >

> > > No IT ISN'T hopeless !! I have fibromyalgia, there are NO TESTS to

> prove

> > > it. Just my word & my docs words. I WON!!!

> > > The ' impartial' SSDI doc wouldnt even say the dreaded FIBROMYALGIA

> > word,

> > > my lawyer tried to make him LOL!

> > > I WON!

> > > DONT GIVE UP HOPE, KEEP TRYING!! You all have test reports & PROOF

> that

> > > your sick!

> > > love

> > > tilly

> > >

> > > fcpfirefly > wrote:

> > > My god!!!!! it's hopeless..

> > >

> > >

> > > >

> > > > >

> > > >

> > > > > > Today is the first time I had to take off from work because I

> > > >

> > > > am

> > > >

> > > > >

> > > >

> > > > > just

> > > >

> > > > >

> > > >

> > > > > > too exhausted to concentrate or make my appearances in court.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > I was back in court the day after I got out of the hospital (8

> > > >

> > > > >

> > > >

> > > > > pints of

> > > >

> > > > >

> > > >

> > > > > > blood had to be transfused) and, yet, the only strenuous thing

> > > I

> > > >

> > > > >

> > > >

> > > > > did

> > > >

> > > > >

> > > >

> > > > > > this week was a two-day trial on Monday and Tuesday.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > The part of end stage cirrhosis (aside from the affects on

> > > >

> > > > family)

> > > >

> > > > >

> > > >

> > > > > that

> > > >

> > > > >

> > > >

> > > > > > I hate most, is; that I can now feel each step downhill in my

> > > >

> > > > >

> > > >

> > > > > health.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com

> > > >

> > > > >

> > > >

> > > > > > web address:

> > > >

> > > > >

> > > >

> > > > > > http://groups. yahoo.com/ group/livercirrh osissupport/

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

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Share on other sites

We were told my Ardis' hepatologist who is now my hepatologist that even at her

very very late stage of the game (she had been with acites for 4 years, jaundice

on and off for three, and drinking both hard liquor and beer the whole time) if

a person quits , there is a possibility they can live a long time. However, it

is unlikely from just the sound of your post that this man will quit drinking.

It is my opinion that he should be told that he is going to die very soon. It is

the right thing to do. Two things are accomplished by this. One, he will have

the ball firmly in his court, and maybe he will quit drinking. Second, he will

be able to make peace with God, or the people here on earth or both. If there is

one thing that I am most grateful for with the choices Ardis made , it is the

fact that even though she chose to drink, no one busted her chops for it, we

were able to make hospice arrangements, she got admitted to a good one, and she

died with

dignity, and grace.

Re: Re: SSDI

> >

> > I hope SSDI and SSI don't have spies here to see what I am about to say.

> > It

> > has been said to me that it doesn't matter how sick you are, only about

> > 20%

> > of applicants are approved the first time. And of the remaining 80%,

> only

> > 20% are approved the second time, the first appeal hearing. It is their

> > way of keeping down the costs. If they tell you you aren't sick enough,

> > maybe you won't appeal, and they won't have to pay you. And, many people

> > do

> > not appeal. I would be interested in finding out how many people are

> > actually approved who have appealed twice and reached the third stage. I

> > would imagine it is rather high. I just hope you find out in time to be

> > able to keep your house Bob. It took 6 months for them to deny me. Jan H

> >

> >

> > >

> > > No IT ISN'T hopeless !! I have fibromyalgia, there are NO TESTS to

> prove

> > > it. Just my word & my docs words. I WON!!!

> > > The ' impartial' SSDI doc wouldnt even say the dreaded FIBROMYALGIA

> > word,

> > > my lawyer tried to make him LOL!

> > > I WON!

> > > DONT GIVE UP HOPE, KEEP TRYING!! You all have test reports & PROOF

> that

> > > your sick!

> > > love

> > > tilly

> > >

> > > fcpfirefly > wrote:

> > > My god!!!!! it's hopeless..

> > >

> > >

> > > >

> > > > >

> > > >

> > > > > > Today is the first time I had to take off from work because I

> > > >

> > > > am

> > > >

> > > > >

> > > >

> > > > > just

> > > >

> > > > >

> > > >

> > > > > > too exhausted to concentrate or make my appearances in court.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > I was back in court the day after I got out of the hospital (8

> > > >

> > > > >

> > > >

> > > > > pints of

> > > >

> > > > >

> > > >

> > > > > > blood had to be transfused) and, yet, the only strenuous thing

> > > I

> > > >

> > > > >

> > > >

> > > > > did

> > > >

> > > > >

> > > >

> > > > > > this week was a two-day trial on Monday and Tuesday.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > The part of end stage cirrhosis (aside from the affects on

> > > >

> > > > family)

> > > >

> > > > >

> > > >

> > > > > that

> > > >

> > > > >

> > > >

> > > > > > I hate most, is; that I can now feel each step downhill in my

> > > >

> > > > >

> > > >

> > > > > health.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > Group Email: livercirrhosissuppo rtyahoogroups (DOT) com

> > > >

> > > > >

> > > >

> > > > > > web address:

> > > >

> > > > >

> > > >

> > > > > > http://groups. yahoo.com/ group/livercirrh osissupport/

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

Link to comment
Share on other sites

I like the policy of the whole truth. We blame doctors for 'trying to play

God' and every time I've seen it done, it's been catastrophic. My

father-in-law had leukemia (watchmaker -- said it was the chemicals) and

never knew. He was sure there was something kept from him and there was. My

grandfather, with colon cancer, felt guilty about not recovering, felt he

was letting down the whole family. He was satisfied when his son explained

the truth. I want to know it all, too. Only with the truth can you move to

the next step, make the choices, take the chances.

Nothing can be built or handled well except with the truth.

See my sig -- a favorite quotation.

If it's opinion, that isn't the same. But facts are facts and belong to the

one involved.

It's not a good thing for an 87-year-old mom to have to deal with by

herself. It's kind of you to explain it to her.

This is probably not what you want.

“The facts are always friendly, every bit of evidence one can acquire, in

any area, leads one that much closer to what is true.” –Carl ,

American psychologist

Re: Re: SSDI

> >

> > It took to the third stage to be approved, but it was with a

> lawyer's

> > help. We considered getting the lawyer after the 1st refusal, but with

> the

> > statistics for approval so low for the second appeal, we thought we

> would

> > save the big guns for last.

> >

> > And just in the nick of time...in the 16 months of not working we

> > went

> > through my 401K of $12,000.00, a loan at 10% of $10,000.00 and an income

> > tax

> > refund of $5,000.00, in addition to maxxing out a half dozen credit

> cards

> > We were ready to start eating PBJs at every meal when we finally got the

> > approval letter. Even at that,we got a monthly check rather quickly, but

> > took another 3 1/2 months to get the back pay! Now we have enough to

> live

> > on, but not enough to pay back the loans AND medical bills.

> >

> > I wonder how much of the success is making it to the 3rd level and how

> > much

> > has to do with you having a lawyer. I am amazed at much differently you

> > are

> > treated in court when you are represented by council as opposed to when

> > you

> > are there by yourself!

> >

> >

> >

> > Re: Re: SSDI

> >

> > I hope SSDI and SSI don't have spies here to see what I am about to say.

> > It

> > has been said to me that it doesn't matter how sick you are, only about

> > 20%

> > of applicants are approved the first time. And of the remaining 80%,

> only

> > 20% are approved the second time, the first appeal hearing. It is their

> > way of keeping down the costs. If they tell you you aren't sick enough,

> > maybe you won't appeal, and they won't have to pay you. And, many people

> > do

> > not appeal. I would be interested in finding out how many people are

> > actually approved who have appealed twice and reached the third stage. I

> > would imagine it is rather high. I just hope you find out in time to be

> > able to keep your house Bob. It took 6 months for them to deny me. Jan H

> >

> >

> > >

> > > No IT ISN'T hopeless !! I have fibromyalgia, there are NO TESTS to

> prove

> > > it. Just my word & my docs words. I WON!!!

> > > The ' impartial' SSDI doc wouldnt even say the dreaded FIBROMYALGIA

> > word,

> > > my lawyer tried to make him LOL!

> > > I WON!

> > > DONT GIVE UP HOPE, KEEP TRYING!! You all have test reports & PROOF

> that

> > > your sick!

> > > love

> > > tilly

> > >

> > > fcpfirefly > wrote:

> > > My god!!!!! it's hopeless..

> > >

> > >

> > > >

> > > > >

> > > >

> > > > > > Today is the first time I had to take off from work because I

> > > >

> > > > am

> > > >

> > > > >

> > > >

> > > > > just

> > > >

> > > > >

> > > >

> > > > > > too exhausted to concentrate or make my appearances in court.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > I was back in court the day after I got out of the hospital (8

> > > >

> > > > >

> > > >

> > > > > pints of

> > > >

> > > > >

> > > >

> > > > > > blood had to be transfused) and, yet, the only strenuous thing

> > > I

> > > >

> > > > >

> > > >

> > > > > did

> > > >

> > > > >

> > > >

> > > > > > this week was a two-day trial on Monday and Tuesday.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > > The part of end stage cirrhosis (aside from the affects on

> > > >

> > > > family)

> > > >

> > > > >

> > > >

> > > > > that

> > > >

> > > > >

> > > >

> > > > > > I hate most, is; that I can now feel each step downhill in my

> > > >

> > > > >

> > > >

> > > > > health.

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

> > > > > >

> > > >

> > > > >

> > > >

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Jan,

That's tough. You are such a great friend to be able to be there and help.

Really. What you are doing for your friends family is enormous.

At the same time it is very sad and hard to to deal with.

My prayers go out to you and your friends family. Especially the mother. This

must break her heart. I think they are lucky to have you.

I know others have posted as well. I wish the best for her son and I pray for

him. He may already know his prognosis. If he had asked this in the hospital the

doctors would have to tell him and some times not tell the family.

I tried to sugar coat stuff with my wife during her last week, but found out

that the doctors and nurses were pretty blunt.

If he does know, and is released, there will most likely be a chance that he'll

be depressed, in denial, experience anger etc. And from what I can tell his

support group is alcohol. So he has an uphill battle.

His development of asictes is a very poor prognosis in almost every case.

But, knowing all that, which you do. It's great that you can be there. Again,

what you are doing in my eyes is the same as being a hero.

MaC

Jan Holman wrote: Thanks

Colleen.

I spent most of my day with a friend who needed someone to drive her 35

miles to the nearest hospital to pick up her son who was discharged today

after being in the hospital since Friday afternoon

He went in because of an infected sore on his leg after he fell on the

desert and really scratched himself up. He had been sent up for a cat

scan. Well, they admitted him, and also did a cat scan on the abdomen,

diagnosed with cirrhosis. He has prescriptions for lactulose and

spirolactone sp? and for librium for alcohol with drawal, nicotine patches,

oxycontin for pain, and one other I can't remember what it was. Oh, levaquin

for the infection. Four of the prescriptions cost over $400.00 and the

nicotine patches alone will be $116.00 for 10 patches

His abdomen is extremely distended to the point it is painful. They didn't

drain it but said he is full of aceties. From what I know through my own

case and research online, he is well past the stage I am in. He has been

living with him mom for 6 months, not working, and she wanted him out of the

house, now she is probably pretty well stuck with him. She is an 87 year

old woman. He is in his middle 50s. We are sure he will go back to

drinking and smoking. I have told her she can't stop him. All she can do

is let him do as he will, pray and step back. Someone suggested alanon for

her. She is very mad at him for letting this happen, she said he also was a

drug user when he was younger but went on a methadone treatment and got

clean. But, nothing was said about Hep C.

I have given her some basic info on the progression of this disease and told

her that he has little or no chance of recovery even if he does quit

drinking. We are wondering how much he should be told about his prognosis

if he doesn't already know, wondering which would make him more apt to be

willing to quit.

Can I get some feed back? Jan H

__________________________________________________

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I hate it for you Bob. I was hoping you would go ahead and get approval 1st

time. See the lawyer and hopefully he will get it straightened out quickly.

I'm about ready to take mine to a lawyer too and release my " advocate " .

SSDI

Well, I got home a while ago , and the letter was in the mail box. I've been

turned down by the wonderful social insecurity administration because they feel

that my liver function should be improving. They came to this conclusion because

my " liver studies " are normal. So the fight is on. Ardis had a very good layer

named Jeff Goldstien and he kicked the SSDi's butt. I'll be in his office Tues.

morning.

__________________________________________________

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Thank you. Good luck to us both. I think it is ironic that we have these things

in common; you knew something was very wrong, and had to pull teeth to get a

biopsy and a diagnosos, and now we both need to pull teeth of a different

animal, but hopefully the bird will scream and give up the dough.

Sent via BlackBerry from T-Mobile

Re: SSDI

I hate it for you Bob. I was hoping you would go ahead and get approval 1st

time. See the lawyer and hopefully he will get it straightened out quickly.

I'm about ready to take mine to a lawyer too and release my " advocate " .

SSDI

Well, I got home a while ago , and the letter was in the mail box. I've been

turned down by the wonderful social insecurity administration because they feel

that my liver function should be improving. They came to this conclusion because

my " liver studies " are normal. So the fight is on. Ardis had a very good layer

named Jeff Goldstien and he kicked the SSDi's butt. I'll be in his office Tues.

morning.

__________________________________________________

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