FIRST LEVEL APPEAL FOR DENIAL OF SSD/SSI BENEFITS

[Guest guest]

HI KARYN, AND HI TO EVERYONE ELSE OUT THERE. IT'S ME TORI. ALSO, WELCOME TO

ALL THE NEW MEMBERS OF THIS WONDERFUL SUPPORT GROUP. SORRY IT HAS BEEN SO

LONG SINCE ANY OF YOU HAVE HEARD FROMME. LIFE ON THE PANCREATITIS

ROLLERCOASTER HAS BEEN ESPECIALLY HECTIC AS OF RECENT. ONCE AGAIN, I AM

GETTING READY TO HAVE MAJOR SUGERY ON WHAT'S LEFT OF MY PANCREAS. I WILL FIND

OUT TOMORROW FROM THE SURGEON EXACTLY WHAT THE DATE OF THE SURGERY WILL BE,

BUT I DO KNOW FOR SURE THAT IT WILL HAPPEN IN THE NEXT TWO WEEKS. NEEDLESS TO

SAY, I AM NOT EXACTLY LOOKING FORWARD TO THE MOST UNPLEASANT, AND SEEMINGLY

ENDLESS RITUAL OF ONE SURGERY AFTER ANOTHER. AND TO TOP THINGS OFF, I WAS

ONCE AGAIN DENIED SOCIAL SECURITY DISABILITY BENEFITS. THEIR BASIS FOR THIS

MOST RECENT ASSANINE DECISION , IS THAT MY CONDITION IS CONSIDERED TREATABLE

AND THEREFORE, I AM NOT CONSIDERED TO BE PERMANENTLY DISABLED, ACCORDING TO

THEIR ARCHAIC GUIDELINES. I NEED THE HELP AND ADVICE OF ANYONE AND EVERYONE

THAT HAS SUCESSFULLY GONE THROUGH A FIRST- LEVEL APPEAL. I HAVE NO IDEA AS TO

WHAT KIND OF ADDITIONAL SUPPORTING EVIDENCE THEY REQUIRE FROM ME IN ORDER TO

CHANGE THEIR MINDS AND CONSIDER ME PERMANENTLY DISABLED. OTHER THAN A PICTURE

OF ME IN MY COFFIN WHEN I DIE TO SHOW JUST HOW SERIOUS AND LIFE-THREATENING

THIS DISEASE IS, I AM LOST AS TO WHAT THEY EXPECT. I WOULD GREATLY APPRECIATE

THE INPUT AND ADVICE FROM ANYONE THAT HAS BEEN THROUGH THIS AND PERSEVERED. I

WILL DO WHATEVER IT TAKES, NO MATTER WHAT, IN ORDER TO GET THE MESSAGE ACROSS

TO THEM. KARYN....COULD YOU PLEASE E-MAIL ME YOUR HOME PHONE AGAIN SO THAT I

CAN CALL YOU TO DISCUSS THIS MOST RECENT, LUDACHRIST SITUATION? I LOST YOUR

PHONE NUMBER WHEN MY COMPUTER CRASHED AND I HADN'T BACKED UP MY TELEPHONE

FILES. I HOPE EVERYONE ELSE IS FAIRING OKAY, AND HANGING IN THERE ON THIS

NEVER ENDING, AND UNPREDICTABLE AMUSEMENT RIDE IN HELL THAT WE CALL LIFE, AND

LIVING WITH PANCREATITS. THANKS TO EVERYONE FOR THEIR PATIENCE, AND FOR

LISTENING TO THIS QUITE LONG MESSAGE. I AM EAGERLY LOOKING FORWARD TO HEARING

FROM AS MANY OF YOU THAT CAN RESPOND TO MY MOST RECENT DILEMMA.

GOODNIGHT!!!!!!!!!!

[Guest guest]

In a message dated 5/28/00 11:16:54 PM Pacific Daylight Time,

THEHEB35@... writes:

<< S THAT MY CONDITION IS CONSIDERED TREATABLE

AND THEREFORE, I AM NOT CONSIDERED TO BE PERMANENTLY DISABLED, ACCORDING TO

THEIR ARCHAIC GUIDELINES. >>

Hi Tori,

I can't speak for anyone else, but I was given the same excuse. The disease

was treatable and I would not be disabled for more than a year. However, I

went through the second denial, and then went in front of the judge the third

time. I had an attorney, that was appointed for me by my long term

disability insurance company. The judge listened to ME, which made all the

difference in this case. He listened and heard everything I said, he also

read my history and knew that I had already been having a difficult time. He

made the final decision, which was in my favor. Don't give up Tori, you are

ill, and you may have some good days, but overall this disease is here for

the duration of our lives. SSD needs to get with the program. I think some

of those decision making jerks need to suffer the way we suffer, then they'll

know what we put up with. Hang in there, and don't give up. Your fighting

for what's yours anyway.

GOD BLESS,

MARIE (KS.)

[Guest guest]

Hi All,

I am new to this group and don't know any of you by name yet. I just read a

post from someone wanting to know about getting an appeal for denial of

SSD/SSI. There is another message board I have been on for a year now and it

has wonderful information. It too, as this group, has many suffering from

this dreadful disease. I have read some post there from others getting

disability for pancreatitis. Here is the web address and I hope it helps some

of you. Just post your questions and I'm sure those that have been through

this process will help if they can.

http://login.yahoo.com/config/login?.src.=grpI & l.intl=usl & .done=http%3a//edit.

clubs.yahoo.com

This should take you straight to the site. Hope this helps.

Terri L.

[Guest guest]

News >>>>

Boston, May 31 <A HREF= " aol://4344:30.bloombrg.389091.602536905 " >(Bloomberg)</

A> -- Eli Lilly & Co.'s growth hormone Humatrope appears to ease symptoms of

Crohn's disease, a debilitating bowel inflammation, a preliminary study

showed.

Thirty-seven adults with moderate to severe Crohn's disease injected

themselves daily with Humatrope or a placebo for four months. Although the

patients on Humatrope had worse symptoms than patients given a placebo when

the study started, they improved significantly more than the placebo group.

The researchers measured patients' condition on a scale from 0 to 600, based

on factors such as abdominal pain, well-being and weight. Higher numbers on

the scale indicated worse symptoms. The scores for patients taking Humatrope

dropped an average of 143 points after four months, compared with a decrease

of 19 points in the placebo group.

``Patients in the growth hormone group had significant improvement by the end

of the first month, with further improvements during the subsequent three

months of therapy,'' said the researchers from New York University School of

Medicine.

The study was financed by Lilly and Genentech Inc., which also makes growth

hormone treatments. It will appear in tomorrow's New England Journal of

Medicine.

While one person on Humatrope worsened and another's condition was unchanged,

most had a marked increase in energy and were able to reduce their use of

other drugs. Side effects of Humatrope included edema in 10 patients and

headaches in five.

While provocative, doctors shouldn't start prescribing growth hormones for

Crohn's patients until more studies are conducted, said Dr. R. Balfour

Sartor, from University of North Carolina School of Medicine, in an

editorial.

The study was small, and more information is needed about the best dose, the

frequency of use, and the length of benefit patients can expect, he said.

May/31/2000 19:02 ET

[Guest guest]

In a message dated 05/29/2000 1:16:56 AM Central Daylight Time,

THEHEB35@... writes:

<< THANKS TO EVERYONE FOR THEIR PATIENCE, AND FOR

LISTENING TO THIS QUITE LONG MESSAGE. I AM EAGERLY LOOKING FORWARD TO

HEARING

FROM AS MANY OF YOU THAT CAN RESPOND TO MY MOST RECENT DILEMMA.

GOODNIGHT!!!!!!!!!!

>>

The social security administration is known for rejecting initial claims. My

uncle was denied and requested an immediate appointment before the judge and

was granted one. He got disability. He has idiopathic osteoporosis. It is

not nearly as disabling as this disease is. Many diseases are treatable -

epilepsy - but are covered under SSI or disability. Perhaps hiring an

attorney may be the route some of us have to go when it gets to the point of

having to fight this out. Perhaps this is something some of us can start

researching in regard to what kind of documentation we need to provide to

show the disabilities. The way this group is coming together and organizing

there are several things that we may be able to do. Karyn has started the

process in action and if we continue in the direction she is moving, first

educating others and ourselves. and getting a better understanding of the

numbers of people that are suffering from this disease. We need to get

organized just as the cancer, kidney, and heart foundations have and start

advocating for changes. AIDS hasn't been a recognized disease for that many

years and look at the progress that has occurred with this terminal disease.

People are living much longer now!!!!!! Look at MS and the telethon each

year. This is possible for those of us suffering from this horrible disease.

Starting with media coverage is very important. We don't have to suffer in

silence and it may not be in some of our lifetimes that we benefit, but if we

can help those that will be diagnosed later then our life has been fruitful.

Maybe this is God's plan for some of us.

Something for all of us to think about and as we are getting organized

perhaps by states or even more locally we can considering making other

advances. I have a couple of professors, one that works for the federal

government in developing policy, and one in community organizing, that I'm

sure would help me out. Now that I am out of school I may be able to focus

more of my attention toward this area. This is definitely not something I

could do alone, but if we could get organized perhaps we could see some

benefits far exceeding any of our expectations.

What does everyone else think?

Sandy

[Guest guest]

In a message dated 05/29/2000 3:57:10 AM Central Daylight Time,

dcp6364@... writes:

<< The judge listened to ME, which made all the

difference in this case. He listened and heard everything I said, he also

read my history and knew that I had already been having a difficult time.

He

made the final decision, which was in my favor. Don't give up Tori, you are

ill, and you may have some good days, but overall this disease is here for

the duration of our lives. SSD needs to get with the program. I think some

of those decision making jerks need to suffer the way we suffer, then

they'll

know what we put up with. Hang in there, and don't give up. Your fighting

for what's yours anyway.

GOD BLESS,

MARIE (KS.) >>

Marie,

You are a very strong and wise woman. You sound like a fighter and an

advocate for others. I've been giving a great deal of thought about trying

to do something about changing the current delimma many of us find ourselves

in. Karyn has started so much and is working with some of the others about

getting conferences going and even getting a newspaper reporter interested.

Are you and others interested in working someway together as well? Like I

said in an earlier e-mail I've got some professors that would help I'm sure.

Sandy

[Guest guest]

In a message dated 6/2/00 8:49:43 PM Central Daylight Time, smraef@...

writes:

<< This is definitely not something I

could do alone, but if we could get organized perhaps we could see some

benefits far exceeding any of our expectations.

What does everyone else think?

Sandy >>

[Guest guest]

In a message dated 6/2/00 8:49:43 PM Central Daylight Time, smraef@...

writes:

<< This is definitely not something I

could do alone, but if we could get organized perhaps we could see some

benefits far exceeding any of our expectations.

What does everyone else think?

Sandy >>

sounds good to me, sandy. debbie (ark)