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About SSI hearings

Another question pertaining to SSI-

But another question beings I got my paper from my lawyer saying-

Don't wear nail polish

Ok, what about length of nails- even if not polished....... I've always had

long fingernails..

And hair color? My mother comes and streaks mine Is this going to be noticed

and go against me because my mother streaks my hair?

They have also called on some vocational expert to be there ?? It states they

gave her exhibits etc........ but can u tell me how she can be an expert in a

rare syndrome that is so different for everyone?

Hugs- TJ

*******************************************

Well TJ, Just don't polish you nails. As far as your hair, don't worry about

the streaks, just don't fuss with it. And don't shave your legs. No makeup. I

guess what I'm saying is, I'd go clean, just not all dolled up. Like that plain

Jane look. " Hurt too much " to fuss look. As far as their so called expert, just

have all the info with you that does pertain to you and your health and EDS. You

just might have more info than her.

Cindylouwho

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About SSI hearings

Another question pertaining to SSI-

But another question beings I got my paper from my lawyer saying-

Don't wear nail polish

Ok, what about length of nails- even if not polished....... I've always had

long fingernails..

And hair color? My mother comes and streaks mine Is this going to be noticed

and go against me because my mother streaks my hair?

They have also called on some vocational expert to be there ?? It states they

gave her exhibits etc........ but can u tell me how she can be an expert in a

rare syndrome that is so different for everyone?

Hugs- TJ

*******************************************

Well TJ, Just don't polish you nails. As far as your hair, don't worry about

the streaks, just don't fuss with it. And don't shave your legs. No makeup. I

guess what I'm saying is, I'd go clean, just not all dolled up. Like that plain

Jane look. " Hurt too much " to fuss look. As far as their so called expert, just

have all the info with you that does pertain to you and your health and EDS. You

just might have more info than her.

Cindylouwho

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About SSI hearings

Another question pertaining to SSI-

But another question beings I got my paper from my lawyer saying-

Don't wear nail polish

Ok, what about length of nails- even if not polished....... I've always had

long fingernails..

And hair color? My mother comes and streaks mine Is this going to be noticed

and go against me because my mother streaks my hair?

They have also called on some vocational expert to be there ?? It states they

gave her exhibits etc........ but can u tell me how she can be an expert in a

rare syndrome that is so different for everyone?

Hugs- TJ

*******************************************

Well TJ, Just don't polish you nails. As far as your hair, don't worry about

the streaks, just don't fuss with it. And don't shave your legs. No makeup. I

guess what I'm saying is, I'd go clean, just not all dolled up. Like that plain

Jane look. " Hurt too much " to fuss look. As far as their so called expert, just

have all the info with you that does pertain to you and your health and EDS. You

just might have more info than her.

Cindylouwho

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Hi TJ,

Are the changes in the medication helping at all since the ER visit and

going partially back on the Avinza? I don't know the rules for the SSI

hearing but it would probably be best to look your worst! I agree don't wear

nail polish, it shows them you can do something with your hands and

concentrate on that task. Well if you streak your hair even though you Mom

helps you with this could be misconstrued by the who will do everything in

their power to deny you. They might think perhaps you have the strength and

stamina to do this or have the finances to have this done. Maybe just keep

it the way it is until after the hearing. I understand this hearing will

make you nervous, but I think all of us would be too. Stay strong and go

gettem! Hang in there, hope you feel better!

Let out a few moans and groans during the hearing, just so they know how

uncomfortable it is to sit there. Best Wishes!

Hugs, S.

About SSI hearings

> Another question pertaining to SSI-

> Sorry been so scarce- this med adjustment - both morphine and methadone

has me in a spin- blek - I say- blek......... Just havent felt like even

reading e-mail let alone anything else but I try.

>

> But another question beings I got my paper from my lawyer saying-

> Don't wear nail polish blah blah

> Geesh.....

>

> Ok, what about length of nails- even if not polished....... I've always

had long fingernails..

> And hair color? My mother comes and streaks mine every so often because

she knows I don't get out and the sunlight no longer has a chance of making

me look like me......... it makes it a mousey blonde and so she will streak

it for me ever so often.........

> Is this going to be noticed and go against me because my mother streaks my

hair?

>

> That hearing is nearing and I cant tell you how nervous I am- their rules

etc sound so scarey......

>

> They have also called on some vocational expert to be there ?? It states

they gave her exhibits etc........ but can u tell me how she can be an

expert in a rare syndrome that is so different for everyone?

>

> Hope everyone is as well as can be........

> Apologize for being so scarce - just been feeling so rotten!

> Hugs- TJ

> God Bless And Hugs- Love Moon

>

>

> ---

> Outgoing mail is certified Virus Free With AVG.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.614 / Virus Database: 393 - Release Date: 3/5/2004

>

>

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> Ok, what about length of nails- even if not polished....... I've

always had long fingernails..

> And hair color? My mother comes and streaks mine every so often

because she knows I don't get out and the sunlight no longer has a

chance of making me look like me......... it makes it a mousey blonde

and so she will streak it for me ever so often.........

> Is this going to be noticed and go against me because my mother

streaks my hair?

Good God, TJ, I can't imagine them judging this! I think that would

be against the law! I think they probably want unpolished nails

because you can tell some physical things by what the nails look

like? That's a guess, but I still can't imagine them doing the other!

God forbid! GOOD LUCK, and I hope you get to feeling much better -

you are in my thoughts and prayers!

Love Lana

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I don't know the rules for the SSI

> hearing but it would probably be best to look your worst! I agree

don't wear

> nail polish, it shows them you can do something with your hands and

> concentrate on that task. Well if you streak your hair even though

you Mom

> helps you with this could be misconstrued by the who will do

everything in

> their power to deny you. They might think perhaps you have the

strength and

> stamina to do this or have the finances to have this done. Maybe

just keep

> it the way it is until after the hearing.

Boy, this is really SAD! If they can't base a judgement on facts,

then who is this country can we trust?? I guess I know the answer to

that. I hate to think it's come to this kind of stuff, but I know it

has. I just think it stinks! I've always been too trusting of

people, but I DO know there ARE SOME good, honest people in this

world - this list is evidence of that!!!

Love Lana

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TJ,

I'm not sure , talk to your attorney, suggestion. Take all documents on VEDS

you have including literature from internet, ceda group, and e-mail! To heck

with the so called expert, they said one would contact me too, one week

after receiving my SSD award.

Hugs,

About SSI hearings

>

>

> Another question pertaining to SSI-

> But another question beings I got my paper from my lawyer saying-

> Don't wear nail polish

> Ok, what about length of nails- even if not polished....... I've

always had long fingernails..

> And hair color? My mother comes and streaks mine Is this going to be

noticed and go against me because my mother streaks my hair?

>

> They have also called on some vocational expert to be there ?? It

states they gave her exhibits etc........ but can u tell me how she can be

an expert in a rare syndrome that is so different for everyone?

>

> Hugs- TJ

> *******************************************

> Well TJ, Just don't polish you nails. As far as your hair, don't worry

about the streaks, just don't fuss with it. And don't shave your legs. No

makeup. I guess what I'm saying is, I'd go clean, just not all dolled up.

Like that plain Jane look. " Hurt too much " to fuss look. As far as their so

called expert, just have all the info with you that does pertain to you and

your health and EDS. You just might have more info than her.

> Cindylouwho

>

>

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TJ,

I'm not sure , talk to your attorney, suggestion. Take all documents on VEDS

you have including literature from internet, ceda group, and e-mail! To heck

with the so called expert, they said one would contact me too, one week

after receiving my SSD award.

Hugs,

About SSI hearings

>

>

> Another question pertaining to SSI-

> But another question beings I got my paper from my lawyer saying-

> Don't wear nail polish

> Ok, what about length of nails- even if not polished....... I've

always had long fingernails..

> And hair color? My mother comes and streaks mine Is this going to be

noticed and go against me because my mother streaks my hair?

>

> They have also called on some vocational expert to be there ?? It

states they gave her exhibits etc........ but can u tell me how she can be

an expert in a rare syndrome that is so different for everyone?

>

> Hugs- TJ

> *******************************************

> Well TJ, Just don't polish you nails. As far as your hair, don't worry

about the streaks, just don't fuss with it. And don't shave your legs. No

makeup. I guess what I'm saying is, I'd go clean, just not all dolled up.

Like that plain Jane look. " Hurt too much " to fuss look. As far as their so

called expert, just have all the info with you that does pertain to you and

your health and EDS. You just might have more info than her.

> Cindylouwho

>

>

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TJ,

I'm not sure , talk to your attorney, suggestion. Take all documents on VEDS

you have including literature from internet, ceda group, and e-mail! To heck

with the so called expert, they said one would contact me too, one week

after receiving my SSD award.

Hugs,

About SSI hearings

>

>

> Another question pertaining to SSI-

> But another question beings I got my paper from my lawyer saying-

> Don't wear nail polish

> Ok, what about length of nails- even if not polished....... I've

always had long fingernails..

> And hair color? My mother comes and streaks mine Is this going to be

noticed and go against me because my mother streaks my hair?

>

> They have also called on some vocational expert to be there ?? It

states they gave her exhibits etc........ but can u tell me how she can be

an expert in a rare syndrome that is so different for everyone?

>

> Hugs- TJ

> *******************************************

> Well TJ, Just don't polish you nails. As far as your hair, don't worry

about the streaks, just don't fuss with it. And don't shave your legs. No

makeup. I guess what I'm saying is, I'd go clean, just not all dolled up.

Like that plain Jane look. " Hurt too much " to fuss look. As far as their so

called expert, just have all the info with you that does pertain to you and

your health and EDS. You just might have more info than her.

> Cindylouwho

>

>

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From: concreteangel

Sent: Monday, March 22, 2004 6:16 PM

Well- seriously, I can't believe that most cases lose if you even wear

nail polish, i mean - if you are laid up- there are not a lot of choices in

life to do....... crocheting hurts....... hands cramp- cant do crosswords,

pen in hand makes hand cramp.......... why is it so bad to polish your nails

,,,, something that may make you feel a little better emotionally ?

That was EXACTLY my thought, TJ!! But I guess what ever it takes, right? I

want to see you get this! You take care now!

Love Lana

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From: concreteangel

Sent: Monday, March 22, 2004 6:16 PM

Well- seriously, I can't believe that most cases lose if you even wear

nail polish, i mean - if you are laid up- there are not a lot of choices in

life to do....... crocheting hurts....... hands cramp- cant do crosswords,

pen in hand makes hand cramp.......... why is it so bad to polish your nails

,,,, something that may make you feel a little better emotionally ?

That was EXACTLY my thought, TJ!! But I guess what ever it takes, right? I

want to see you get this! You take care now!

Love Lana

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From: concreteangel

Sent: Monday, March 22, 2004 6:16 PM

Well- seriously, I can't believe that most cases lose if you even wear

nail polish, i mean - if you are laid up- there are not a lot of choices in

life to do....... crocheting hurts....... hands cramp- cant do crosswords,

pen in hand makes hand cramp.......... why is it so bad to polish your nails

,,,, something that may make you feel a little better emotionally ?

That was EXACTLY my thought, TJ!! But I guess what ever it takes, right? I

want to see you get this! You take care now!

Love Lana

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Re: Re: About SSI hearings

Well- seriously, I can't believe that most cases lose if you even wear nail

polish, i mean - if you are laid up- there are not a lot of choices in life to

do....... crocheting hurts....... hands cramp- cant do crosswords, pen in hand

makes hand cramp.......... why is it so bad to polish your nails ,,,,

TJ - tell the judge that YOU didn't do your nails/hair - your mother has to do

them for you...that would show how little you can do for yourself! Good luck

with the hearing!!! I know you'll win, hands down!!!

Bonnie

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Re: Re: About SSI hearings

Well- seriously, I can't believe that most cases lose if you even wear nail

polish, i mean - if you are laid up- there are not a lot of choices in life to

do....... crocheting hurts....... hands cramp- cant do crosswords, pen in hand

makes hand cramp.......... why is it so bad to polish your nails ,,,,

TJ - tell the judge that YOU didn't do your nails/hair - your mother has to do

them for you...that would show how little you can do for yourself! Good luck

with the hearing!!! I know you'll win, hands down!!!

Bonnie

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Re: Re: About SSI hearings

Well- seriously, I can't believe that most cases lose if you even wear nail

polish, i mean - if you are laid up- there are not a lot of choices in life to

do....... crocheting hurts....... hands cramp- cant do crosswords, pen in hand

makes hand cramp.......... why is it so bad to polish your nails ,,,,

TJ - tell the judge that YOU didn't do your nails/hair - your mother has to do

them for you...that would show how little you can do for yourself! Good luck

with the hearing!!! I know you'll win, hands down!!!

Bonnie

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From: concreteangel To: ceda

Subject: Re: About SSI hearings

Going to take as much as I can- but do they allow a patient to be so called

more knowledgeable than a so called 'expert?

__________________________________________________

Who better to know a little known disorder than the person living it? She has

a paper or two, you have 10. You can disprove everything she has with the info

the EDS papers have to prove. And if you get the same reaction as I did from my

primary to an EDS trial of 35 patients..... She said " 35 people? this is no

study " And I said... " With such a rare syndrome how do you expect a large study?

How many EDSers do you think can even get to a study? Remember, we are a rare

breed! " ,....... " these are the best studies known on the condition. " .....

" Expert? Well actually I don't see one here. There are only a few in the world. "

Just where do you think their so called expert is going to get their information

from? Who is closer to the info than you?

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True- but I was given the impression that nothing I could print out would be

able to be even brought up- its all different now he said.

Plus........... he also explained to me why so many hate taking on these cases-

usually if it does go through the back payment etc goes directly to the

patient....... and most of the patients that hired the lawyers don't pay the

lawyers their share - in the future that will be changed and the lawyers will

get the checks and then distribute it to the patient and keep their share- heck

If I am able to receive it, I'll be more than glad to pay my lawyer for his

help- I'm tired of filling out those papers and feeling so lost.

Hugs TJ

God Bless And Hugs- Love Moon

Re: About SSI hearings

Going to take as much as I can- but do they allow a patient to be so called

more knowledgeable than a so called 'expert?

__________________________________________________

Who better to know a little known disorder than the person living it? She

has a paper or two, you have 10. You can disprove everything she has with the

info the EDS papers have to prove. And if you get the same reaction as I did

from my primary to an EDS trial of 35 patients..... She said " 35 people? this is

no study " And I said... " With such a rare syndrome how do you expect a large

study? How many EDSers do you think can even get to a study? Remember, we are a

rare breed! " ,....... " these are the best studies known on the condition. " .....

" Expert? Well actually I don't see one here. There are only a few in the world. "

Just where do you think their so called expert is going to get their information

from? Who is closer to the info than you?

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True- but I was given the impression that nothing I could print out would be

able to be even brought up- its all different now he said.

Plus........... he also explained to me why so many hate taking on these cases-

usually if it does go through the back payment etc goes directly to the

patient....... and most of the patients that hired the lawyers don't pay the

lawyers their share - in the future that will be changed and the lawyers will

get the checks and then distribute it to the patient and keep their share- heck

If I am able to receive it, I'll be more than glad to pay my lawyer for his

help- I'm tired of filling out those papers and feeling so lost.

Hugs TJ

God Bless And Hugs- Love Moon

Re: About SSI hearings

Going to take as much as I can- but do they allow a patient to be so called

more knowledgeable than a so called 'expert?

__________________________________________________

Who better to know a little known disorder than the person living it? She

has a paper or two, you have 10. You can disprove everything she has with the

info the EDS papers have to prove. And if you get the same reaction as I did

from my primary to an EDS trial of 35 patients..... She said " 35 people? this is

no study " And I said... " With such a rare syndrome how do you expect a large

study? How many EDSers do you think can even get to a study? Remember, we are a

rare breed! " ,....... " these are the best studies known on the condition. " .....

" Expert? Well actually I don't see one here. There are only a few in the world. "

Just where do you think their so called expert is going to get their information

from? Who is closer to the info than you?

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