disability

[Guest guest]

Jackie,

More advice, if layoffs are comming, ask your supervisors if you can be let go

for inability to perform rather than be laid off. If you are going to seek a

disability, you can't claim unemployment anyway, and you have to go through the

six months of hell to qualify for disability regardless. In short do whatever

you can to document your disability and do what you can to get ready to live for

6 mos with no income.

[Guest guest]

Gretchen,

Thanks. I already printed all the information from you files (thanks for great

info) My girlfriend who has been on for a long time called disability yesterday

and they said due to the nature of the disease, it being chronic and

progressive, I do not need as much documentation as others need and that they

will most likely sent me to a SS doctor for evaulation. Does this sound right to

you?

Jackie

[Guest guest]

Casey,

Thanks for the info and I just joined the group you listed.

Jackie

[Guest guest]

Thanks! I have been working for myself and know full well that we will be

strapped for a while. I did not do this years ago because I was a single parent,

but now that I am married I feel a little more secure with doing this, plus

before I would never go without my health insurance.

[Guest guest]

Gretchen,

Another question. I pulled off a site a Medical Source Statement for a physician

to fill out. It seems like most of the questions on there are about pain. I am

one of the lucky ones that does not have neuropathy pain, but I get extremely

tired and achy when sitting in a chair for periods of time. These questions seem

to be yes or no questions. As you can see, I am trying to be as thorough as

possible before submitting the application.

Yes, my attorney told me he would come with me if need be at a hearing as his

daughter goes to school in the same state I am living now and he is a good

friend of my brother-in-law who specializes in disability. Is it better if I get

a disability advocate to help with the paperwork, or do you think this is

something I should do on my own?

Gosh, I feel like an idiot, but this is all so foreign to me!

Jackie

[Guest guest]

Hi Jackie,

Yes, most likely the SSA will send you to a doc. This doc works for SSA

and (of course) knows nothing about CMT. It is just part of

the 'process'. The doc may do something as simple as check your

reflexes, or ask you something wierd like count backwards by 7's from

100. You can ask for a doc that knows CMT if you want, but there aren't

that many around, as we all well know.

I would still suggest having a folder of your medical records in your

posession for the application process and your personal files (SSA has

a nasty habit of 'loosing' paperwork, or making 'mistakes'.)

As for the Medical Source Statement, did you pull it off the SSA website or

elsewhere? Just make sure all your forms are from the SSA.

Gretchen

[Guest guest]

Hi again Jackie,

In answer to your question, and knowing you for some time, I feel you

can handle the application process yourself, without the help of an

advocate or attorney. The application is on-line, very detailed, and

as long as you have a list of things like your jobs and what your

duties were and dates you worked, plus medical stuff (tests,

diagnosis, any hospitalizations, PT, OT, MDA visits, AFO checks, W/C, scooter,

custom shoes, hand/wrist supports, etc. )

There is a section where you are asked to describe how you are affected and why

this prevents you from working. (i.e., cannot stand or walk more than 5 minutes

without falling and loosing balance, unable to type due to hand cramping,

muscular ache and fatigue requires more time for rest)

The online application has a few forms to print out at the end and

send with required papers. The application takes about 3-4 hours to

complete, if you do it all at once, but it gives you a code number to

refer back to if you stop it for awhile and go back to it later.

Something else, I forgot in my last post: Having an attorney to begin

your application is a waste of time. I know sites 'recommend' an

attorney because those with attorneys get approved faster. Not true.

And IF the time comes when an ALJ hearing is needed, ONLY get a

lawyer from * your state * and possibly within the same county as

you, from http://www.nosscr.org/ 800-431-2804 A Certified Non-

Attorney Representative, also from NOSSCR, can also represent you.

NOSCCR attorneys and reps do nothing but Social Security Disability

Law and they all receive more educational each year. They are also

approved by the SSA (although they work for you) Having a rep in your

county will help, because he/she will know the ALJ's and what they

need.

But, that's jumping ahead a bit.

Gretchen

[Guest guest]

Jackie,

These FAQ's from NOSSCR may help http://www.nosscr.org/faq.html

Gretchen

[Guest guest]

Thanks for answering my questions! I am in the process of getting all my medical

docs sent directly to me, so I know that they were sent. I have been through

that nightmare before!

Another question that I am not getting a straight answer. Can you work making

under the $900 amount while you are applying for disability or are you supposed

to show no income at all? SSI rep said yes you can work, attorney says

no????????????

Thanks,

Jackie

[Guest guest]

Hi Jackie,

No, you cannnot be working when you file for SSDI. The attorney is

right. In order to be found " disabled " under SSA's rules, you must be

UNABLE to work. So, if you are working when you file, SSA will see this

and imediately reject your application.

Later, after you have been awarded benefits and are recieving them, you

* may * feel like you are able to work a few hours a week, and then may

want to look into the " Ticket to Work Program " . But, be careful, this

can trigger a Trial Work period, and after of which, you may be found

ABLE to work, and your SSDI discontinued.

One more thing I forgot to mention: Keep file copies (hard copies) of

everything related to your SSDI application. Medical records, test

results, communication from SSA personnel (dates, times, names of phone

calls) etc.

Gretchen

[Guest guest]

Gretchen:

When I work with SSDI benefits. I can work as many hours I can that make up to

and below the social security's limit. For example, last year (2007) I could

make up to $900. Once over that amount SSDI would be canceled.

[Guest guest]

,

Yes, that's right. Once a person is receiving SSDI benefits, she/he may

work as many hours as wished, as long as the person stays under the

$940 per month in 2008. ($980 for 2009) Of course, the return to a bit

of work must be reported to SSA.

However, the monthly earnings amount that SSA uses to determine if a

month counts for the Trial Work Period (TWP) is $700 for 2009. Info on

a TWP is at https://www.socialsecurity.gov/OACT/COLA/twp.html Once you

hit your TWP max, you are considered able to work and benefits are

stopped.

When I responded to Jackie's post about * working while filing for

disability * I stated that a person must be UNABLE to work. Period. If

someone files for SSDI benefits and is working at the same time, the

claim will be quickly denied.

Gretchen

[Guest guest]

These are questions you need to address to your insurance company which I'm

guessing is this CCP/Sunlife.

Celeste

S

[Guest guest]

FallFlighter, I'm so sorry you're having to deal with this. How are you being

treated? What medications are you taking? How often are you having blood

tests? What kind of doctor are you seeing?

Others can give you better advice than I can about SSDI.

Let us hear from you; perhaps some of us can give you information.

Best wishes.

Harper

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

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[Guest guest]

There are several things that might help. I get a flu shot every year.

Make sure you are taking enough meds for your PBC. You cannot overdose so

taking a higher dose won't hurt. I currently take 2400 mg of ursodiol a day.

Getting enough meds will help with the itching. I applied for disability with

only PBC as a problem. I was denied twice, hired a lawyer and had to go before

a judge. I explained to him that I would be a great employee when I had

enough energy to make it to work, but could not know from day to day if I would

make it to or through a shift. I take Biotin which is a B vitamin (B1 & B2)

it helps a lot with the tiredness and made my hair come back in. The biggest

thing you need to do is find a GOOD doctor who will work with you to adjust

your meds to correct levels. This might take time and many visits but that

will make the biggest difference.

Kathy Thibeault

dx 6/01

staged 3/4 now 4

still kicking but not high

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[Guest guest]

I'm concerned that you get your itching under control. " Liver itch " is

exhausting, and scratching can lead to infection, particularly for those of us

taking immunosuppressants.

Also, itching could indicate that your liver isn't yet as healthy as it could

be.

Please make sure that your doctor knows about your symptoms. And, if he or

she disregards your concerns, it may be time to look for a different

hepatologist. I know it's hard to even think of this extra work when you're

feeling

lousy.

AIH is an extremely treatable disorder, and it's an extremely serious

disorder. It's essential that you do everything possible to get medications at

the

optimum dosage. Too much or too little can cause real, life-long problems.

Do you have the information you need about AIH? If not, I can send you links

to some sites. (As I understand it, you're saying that AIH is your problem,

rather than PBC or PSC.)

Best wishes.

Harper

AIH dx 2000

CD dx 2002

San Francisco and thereabouts

In a message dated 2/5/09 1:09:37 PM, mom2you2@... writes:

> The biggest

> thing you need to do is find a GOOD doctor who will work with you to adjust

> your meds to correct levels. This might take time and many visits but that

> will make the biggest difference.

>

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

Who's never won? Biggest Grammy Award surprises of all time on

AOL Music.

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[Guest guest]

I can't tell you much about disability applications, except to say that it's

important to keep excellen t records of everything -- appts, treatments,

symptoms, work problems.

Others can tell you more.

Harper

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

Who's never won? Biggest Grammy Award surprises of all

time on AOL Music.

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[Guest guest]

I am so sorry that you are having such a difficult time. I was able to

teach until I decided to retire because I had my years in, over 35,

and I still don't have as many symptoms as you describe. I was

diagnosed in 1998, stage 1, and I'm still there.

You don't say where you live, but if you tell us where you are,

perhaps you can be directed to a doctor who can work with you and help

you get back on track.

Lots of luck,

Sharon PA

[Guest guest]

The best advice is to get an attorney.? He/she will be paid 25% of your

backpay.? You will only have to pay expenses such as copies, etc.? It is the

best way and if you try yourself you can damage your chances.

Trish

[ ] Disability

Hi, I am 28 and was told in 2005 that I had stage I of the PBC. I also

have thyroid disease (Graves & Hashimotos) and Fibromyalgia. I have had

several other health problems also. When I was told I got scared

because I was young and trying to become a preschool teacher. All of my

Doctors were telling me I would never be able to teach because of my

immune and health issues. Well Im not one who takes someone telling me

I can't do things, so I got a job teaching 4 yr olds. I taught for

about 2 1/2 years and I just kept getting sicker. I finally give in and

quit. No I am trying to get on disability because I dont know what else

to do. I hurt all the time, sick to stomach, itch so bad I make sores,

can't sleep but so wore out, and catch every germ out there. Anyway I

was wondering if anyone out there has been through the disability

process and if you could give me some words of wisdom. I feel like I am

giving up and I hate this feeling. I would just like to feel like a

healthy 28 yr old. My children suffer the most because I am always

tired and hurting. HELP PLEASE!!!!!

[Guest guest]

Hi fallflighter,

I am so sorry to hear of your difficulties with PBC. I hope that you are on

URSO for the disease and that you are on the correct dosage as it does help

with many of the symptoms you describe. Here is a chart that shows the

correct dosage:

_http://pbcers.org/Urso250DosChart051704.htm_

(http://pbcers.org/Urso250DosChart051704.htm) If necessary print it out and

bring it to your doctor as it

is very important to be taking enough. It should also help with the itching

but if it doesn't there are many medications that your doctor can try you on

as well as the great suggestions that Joanne wrote. If your doctor isn't

helpful then I would advise finding a GastroInterologist or Hepatologist who

is.

While you are on the PBCers.org website check it out if you haven't already,

there is a wealth of valuable information on it. It also talks about

applying for SSDI in detail.

I was forced to apply for SSDI in 1999 when I could no longer work. My

doctor told me it was time and I cried all the way to the SS office because I

felt like a failure. However it wasn't me that had failed, it was my body due

to these autoimmune diseases. I applied for the first time by myself and when

I was denied I hired an SS Attorney. They don't cost anything up front and

only get paid if you win, and even then they only get 25% (amount may have

changed) of your backpay when you are finally awarded. Some of us on the PBC

Digest got approved almost immediately, while others had to wait a couple of

years like myself. The most important thing in applying is to read how to do

it first since you will save yourself a lot of time and trouble.

_http://pbcers.org/ssd.htm_ (http://pbcers.org/ssd.htm)

I wish you the best of luck and please feel free to contact me personally

with any questions you may have..

Hugs,

Dees, PBC dx 99, Fibromyalgia 99, stg 2/3, Fort Myers, FL. 53

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[Guest guest]

Hi Therese from CT, I am going through theSSDI nightmare right now, I have AIH

2000, Diabetes 1998, diabetic neuropathy in feet and hand, back problems, Fatty

liver 2008, and this past year they found lung nodules, biopsy ruled out cancer

so they said it was respiratory bronchialitis,  I filed in March of 2007 after

getting laid off, they just said I was no longer needed, but I think it was

because I was slowing down on production because I was so tired all the time.and

constantly getting sinus infections and could not fight them off. (I would get

sick at least 4 times a year).  I have been denied 2 times now and I am waiting 

go before the judge next time and they said that could take a year.  After being

turned down the first time I did get a lawyer.  After 18 months of Cobra

insurance(very expensive) i went without insurance for a couple of months, very

scary, I now have not the best insurance but at least I can get my

prescriptions(on

insulin).  The lawyer says I have to be treating with all my drs but new

insurance only accepts one of them so now I have to find new drs and all the

expenses have broke me so I'm trying to find one who can take care of a few of

my problems..  Now on the happier side I have not had one cold or infection in 2

years and I feel better because I can rest when I have to and can get a good

nights sleep.  I also make sure I use the wipes for the grocery carts that most

stores are supplying.  Sorrry this got so long, but my best advice is to just

hang in there with any luck you'll be approved right away.  Good

luck........Therese from CT

[Guest guest]

Kathy: you mentioned that you are taking Biotin and it has helped your hair

grow back in. A couple of questions: was your hair thinning from age, ursodiol,

any of the forms of alopecia and how many milligrams of biotin are you taking? I

have taken 5000 mg for over a year, but I don't find the crown area getting any

better, unfortunately.

Pam, age 60, pbc dx 10/08 stage 1, Hashimotos, OLP

[Guest guest]

Sorry that you weren't approved this round, Heidi. It's good that you

got your insurance back though.

I hope you'll be feeling better soon.

I

Not an MD

On Wed, Feb 25, 2009 at 8:11 PM, <sposy@...> wrote:

> Hi group,

>

> Well, I got my notification today that I was not approved. That's fine as I

> was expecting that. Tomorrow, I'll go in search of a good disability lawyer.

> If anyone on the list is from Mass. and knows of one, feel free to email me

> privately. The reasons they listed are amusing, and out of context. I could

> already write 2 pages myself, but I think this time, I will go in with a

> stronger arm. At least I have my health insurance back and can start my MTX

> again on Thursday, but down to 6 pills. I have a synovial cyst on my foot,

> am

> hoping the mtx takes it down, not sure I want a shot there. Got one in my

> pinky , it's already working! Thanks for listening!

>

> Heidi in Mass.

[Guest guest]

I am SO sorry you were not approved this round, Heidi. I wish I could help you

with an attorney but I am in PA.

I am glad you have your health insurance back.

*~ Kami ~*

[ ] Disability

Hi group,

Well, I got my notification today that I was not approved. That's fine as I

was expecting that. Tomorrow, I'll go in search of a good disability lawyer.

If anyone on the list is from Mass. and knows of one, feel free to email me

privately. The reasons they listed are amusing, and out of context. I could

already write 2 pages myself, but I think this time, I will go in with a

stronger arm. At least I have my health insurance back and can start my MTX

again on Thursday, but down to 6 pills. I have a synovial cyst on my foot, am

hoping the mtx takes it down, not sure I want a shot there. Got one in my

pinky , it's already working! Thanks for listening!

Heidi in Mass.

**************You're invited to Hollywood's biggest party: Get s

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[Guest guest]

Hi Heidi:

So sorry you didn't get approved for your disability, but I am glad you

will get a good lawyer and move ahead.

Sorry about your foot. I has such trouble with my right foot. Went to

the Podiatrist, ended up getting shots in my heal 3 times!!! It was a

killer, but my foot is fine now, thank God. I swear, it is always

something going on with us!!!

Wishing you pain free days ahead. Take care of yourself, and talk soon.

Hugs,

Barbara

>

> Hi group,

>

> Well, I got my notification today that I was not approved. That's fine

as I

> was expecting that. Tomorrow, I'll go in search of a good disability

lawyer.

> If anyone on the list is from Mass. and knows of one, feel free to

email me

> privately. The reasons they listed are amusing, and out of context. I

could

> already write 2 pages myself, but I think this time, I will go in with

a

> stronger arm. At least I have my health insurance back and can start

my MTX

> again on Thursday, but down to 6 pills. I have a synovial cyst on my

foot, am

> hoping the mtx takes it down, not sure I want a shot there. Got one in

my

> pinky , it's already working! Thanks for listening!

>

> Heidi in Mass.

> **************You're invited to Hollywood's biggest party: Get s

> updates, red carpet pics and more at Moviefone.

>

(http://movies.aol.com/oscars-academy-awards?ncid=emlcntusmovi00000001)

>

>

>