RE: EDU:Disability Information- Here Cat....I redid it for you...Lorie

[Guest guest]

Lorie

WOW!!! That is invaluable information and the time you took to get it all

down. Thank you so much. I personally haven't filed for disability, but if

I ever need to, this will be more helpful than any website.

Thanks thanks thanks for your time to put this together.

Cammie

>

>Reply-To: Stillsdisease

>To: Stillsdisease

>Subject: EDU:Disability Information- Here Cat....I redid it

>for you...Lorie

>Date: Sun, 10 Sep 2006 05:54:14 -0000

>

>

>SOCIAL SECURITY TIPS

>

>BASIC RULES:

>

>Overwhelm them with evidence. (1-doctors, hospitals, pharmacies, labs,

>clinics, etc 2- copies of all your labs 3- copies of all your journal

>pages,

>4-

>Internet pages about your illnesses 5 †" Group emails from you

>complaining or

>asking for information, help. Include your introductory story.

>

>Make or keep a copy of everything they send you and you send them.

>(in the

>future, they WILL ask for the same information over and over. If you

>copied

>every thing, you can re-read what you wrote and send it again without

>all the

>stress of trying to think clearly through the fever, meds and pain. )

>

>Be insanely graphic and specific (If you didn’t live in your skin

>and were a

>total stranger to yourself, if you read what you wrote… would YOU

>think you

>were

>sick or struggling?)

>

>List absolutely everything you can think of that can be documented

>medically

>(Gather Facts) (List health issues you have faced since birth and

>still face.

>Be

>sure to list things like trouble sleeping, hands go numb, headaches,

>blurred

>vision, difficulty with your eyes in light, skin rashes, etc. This

>disability

>claim IS NOT JUST about your Stills Disease although that is what put

>you

>over

>the edge.)

>

>Be able to PROVE your claim (Supporting Arguments) (Letters from

>family,

>friends, co-workers, Lab results, Names of Doctors sought for

>treatment, Over

>the counter remedies tried, etc. Don’t forget that if you ask for

>letters

>from

>people who know you, you don’t have to include ones you don’t

>like just

>because

>you got them. Ask for the letters to state your basic personality

>(kind, hard

>working, honest, dependable, etc) before becoming ill, how long this

>person

>has

>known or observed you, changes they now see in you or your work

>ethics since

>becoming ill.)

>

>Provide illness documentation (Research Information) (The more you

>provide

>about each of your ailments, the better off you are. Don’t expect a

>claims

>adjuster to be a brilliant medically savvy person. Think back to when

>you got

>each of your diagnosis’s from however many doctors it took to get

>diagnosed.

>Obviously, if it took more than one doctor to diagnose you, the other

>doctors

>didn’t know what was wrong and they are medically savvy. Think

>about the

>first

>time that you heard the words Stills Disease. Did you know what that

>meant,

>even

>though you lived with it daily? What answers did you want about your

>diagnosis?

>Believe me, the people in charge of approving or denying your

>disability

>claim

>want the same answers / information you did so give it to them. I

>mailed 300

>pages of supporting information along with my initial SS filing

>forms.

>Sometimes

>I think I got approved just so the person with my file didn’t have

>to wade

>through everything. LOL)

>

>If you want, you can stop here. I am going over the form page by page

>now and

>letting you know what information they ARE going to ask you for so if

>you

>haven’t requested the original paperwork, you can get started

>pulling

>information together. Trust me on this, they DON'T give you enough

>time to

>gather it all by the deadline, especially if you are sick. Don’t

>worry, if

>you

>have already filed, you can always ADD more information as needed

>later.

>

>Okay, here goes. The nitty gritty of Social Security standard

>procedure. Go

>to

>www.SSA.gov/mystatement or call to request your social

>security

>statement that will give you your work history income and the amount

>you are

>entitled to receive monthly.

>

>Gather Facts for forms

>

>Begin a journal. Page one †" list absolutely everything that is

>bothering you

>at that moment. Start with your hair on your head and end with your

>toenails.

>Be

>serious and complete. Here is mine for today. Example: Head †" hair

>falling

>out,

>dry scalp, headache, blurred vision, stuffy nose, cheeks hurt, jaw

>pain,

>tooth

>pain, sore throat, stiff neck and burning pain on right and left side

>of my

>neck. Body †" deep ache in my rib cage (I know it’s costo

>chondritis but my

>job

>here is to just list where it hurts, not identify what it is),

>asthma, heart

>racing / flip flopping, stomach pain, IBS, right ovary hurts, entire

>spine

>pain,

>back muscles stiff, shoulder joints hurt. Fever. Limbs †" both elbow

>and

>wrists

>hurt. Right arm swollen, fingers stiff and painful, joint between

>pointer and

>middle finger very painful. Both hands regularly go numb, right hand

>every

>time

>I bend my elbow. Hip thigh sockets ache, knees stiff and painful,

>ankles

>unsteady and painful, right side of my foot

>very tender, Feet tingle when I walk. 2 middle toes on right foot

>regularly

>numb. (okay, I think I am done with my list for this morning but it

>helps to

>document pain level for each one , too. 1 †" 10 scale. Also rate how

>you are

>handling these health issues emotionally, mentally, physically,

>spiritually,

>etc. I made up my own list of 1 †" 10 that I will include in another

>email. It’

>s

>silly but it helps me scale things when I can’t figure it out.)

>

>Reread your list. Is there anything missing that you usually have? I

>don’t

>have a migraine listed or the patches on my skin that are dying and

>itching.

>I

>forgot the normal itchy dry skin and fatigue. I have them so much I

>don’t

>even

>notice to jot them down any more. Add things like " bronchitis every 2

>months,

>food, drug, environment allergies / sensitivities, etc.

>List all the ailments/ diseases / syndromes / illnesses you have or

>regularly

>have. Define them in accurate laymans terms and give the prognosis. I

>won’t

>do

>them all but here are a couple of mine. Don’t forget a SINGLE

>medical issue.

>When you start reading, you’ll get the idea. I have a sense of

>humor that

>helps

>me get through tough times so I let ii show. I figured it would prove

>I am

>sick

>and am trying to cope with it the best I can but it’s too

>overwhelming. I was

>not denied so who knows if it helped or not? List any vitals you take

>like

>your

>BP, Pulse, Temp, Glucose levels, etc.

>

>Fibromyalgia: This disorder affects the muscles in your whole body.

>They are

>stiff, sore, painful, burning. There are 18 specific " hot spots " and

>of

>course,

>I have all 18. You only need 5 to have the disease. I take Bextra 20

>mg 2

>times

>a day with some success. Grape seed extract is also very good for

>this. It

>loves

>heat (hot packs, bath, sun heat, etc) and exercise helps with pain

>and

>stiffness

>but exercise makes my fever go up and stay up for 3 weeks after 30

>minutes of

>gentle workout. =(

>

>Krukenburg Spindle Syndrome: This is a very RARE form of Pigmentation

>Glaucoma. The fluids in my eyes (both of them, must keep it fair, you

>know)

>are

>washing away the color in my eyes. The fragmented particles form an

>hourglass

>shape over the eye, eventually blocking all vision. It causes

>blindness.

>There

>is no cure.

>

>Migraines: Self explanatory. Guess I needed this malady to round out

>the

>total

>health picture. Caused by food allergies (of course avoided if

>possible),

>chemical sensitivities, toxicity with medications, illness, whatever.

>Don't

>need

>a reason, just a headache will do.

>

>Necrobiosis Lipoidica: Another RARE illness affecting the skin. (Why

>not? I

>have something for everything else) Necrosis means " death " . With this

>illness,

>the lipid part of your skin dies. There is no cure. There is not a

>solid

>foundation for knowing what causes the disease, but they do know that

>it

>affects

>more women than men, legs most frequently, and 20% of people with the

>illness

>are diabetics. Surgery is not recommended.

>

>Neuropathy: No, not meaning you don't get nervous anymore, this means

>I am

>losing feeling in my hands, feet, and other parts. No cure.

>Supporting Life Information

>

>Here is a list of things they will ask for so have them handy. Your

>name and

>any previously used names. Your social security number. Date of

>birth. USA

>citizen? Date you became unable to work. (make this as far back as

>you can,

>they

>will determine an eligibility date from records but won’t look back

>any

>farther

>than you tell them.) Have you filed for SS before? Have you or do you

>intend

>to

>file for workman’s comp, public disability, or black lung benefits?

>Are you

>entitled to or do you expect to become entitled to a pension, annuity

>based

>in

>whole or in part on work after 1956 not covered by SS? Marital

>status. When /

>where married, Spouse birth date and SS #. Previous marriages. Date,

>where,

>when

>divorced and where records of that court order are kept. Children,

>names,

>birth

>dates, social security numbers.

>

>Now that you have a clear and depressing picture of what you really

>face on a

>daily basis, call the local chapter of the Social Security office. Do

>a phone

>interview. Answer her questions and you will have fresh in your mind

>what to

>tell him/her since you just made your list. Keep a journal or

>calendar of

>events. You will need it from time to time. The phone interviewer

>will decide

>if

>you qualify to even apply. S/he will send you confirmation that you

>applied

>by

>phone and that paperwork is on the way. Keep a folder of all the

>papers you

>send

>and receive. Keep them in order with most recent on top (so you

>don’t have to

>wade though it all for the most recent)

>

>The page you will receive will be a receipt for your claim. It will

>tell you

>who to contact for questions before notice of award and after, the

>date you

>applied and so on. It will give you the time frame they expect to

>need to

>complete the application. Usually 4 †" 6 months or 180 days. Soon

>you will be

>getting forms to fill out. They have a return deadline so get

>prepared while

>you

>are waiting.

>

>APPLICATION

>

>WORK ACTIVITY REPORT - EMPLOYEE

>

>They will want you to provide medical evidence from any hospital,

>physician,

>clinic, pharmacy, agency or organization that can document your

>health. You

>must

>agree to notify SS if you get better or have changes for the better

>or worse;

>if

>you work, if you receive any other disability benefits from any other

>program

>(black lung, workers comp, etc); or if you go to jail or are

>convicted of a

>crime that requires confinement in a public institution. They will

>want your

>work history, type of jobs done, dates of employment for each

>employer.

>

>You will be asked to verify your identification, your living

>arrangements,

>resources like the vehicle, make, model and year, owner, value and

>necessity

>of

>use. They will want your checking / savings account information such

>as

>banking

>institution, current value, income (Unemployment benefits, spouse’s

>income ,

>child or spousal support, etc)and sources and information on

>eligibility for

>other benefits like food stamps and welfare. They will check public

>records

>so

>be accurate and honest.

>

>On your income, the really yucky part is verifying income. You have

>to list

>gross income for the past year. Start hunting for those pay stubs

>because it

>HAS

>to be divided by MONTH. Maybe your employer can help, or any agency

>you get

>money from. They also want to know if you got any special payments

>from your

>employer in addition to regular pay. (tips, bonuses, sick or

>disability pay,

>vacation pay, meals, room or rent, transportation, use of a car or

>vehicle,

>child care, etc) If yes, what were they? What month and year? Amount?

>

>Then you are asked to list your impairment work related expenses.

>This is any

>medically necessary stuff needed so you can work. You must list only

>things

>bought with your own earnings for things or services related to your

>illness

>for

>which you were not get paid back. (Medicines or co-pays, bandages,

>braces,

>wheelchair, artificial limbs, Braille equipment, special phone or

>computer

>equipment, modifications to home (wider doorways, roll in shower,

>ramps,

>wheelchair lift) or modifications to your car (chair lift) or personal

>attendant.

>

>DISABILITY REPORT ADULT

>

>Section 1: Name, SS #, Phone number, names of friends or relatives

>that can

>verify your health.

>

>Section 2: What illness, injuries or conditions limit ability to

>work? Do

>they

>cause pain? When did they begin? When did they affect your work? How?

>Did you

>have to stop working?

>

>Section 3: List ALL jobs you have had in the past 15 years. What did

>you do,

>for how long, how many hours did you walk / stand/ sit/ climb/ stoop/

>kneel/

>crouch/ crawl/ handle, grab or grasp big objects/ write, type or

>handle small

>objects? How heavy, how frequently?

>

>Section 4: INFORMATION ABOUT YOUR MEDICAL RECORDS

>They ask you to list medical facilities where you have been treated

>for the

>illness the affects your ability to work. LIST ALL YOUR ILLNESSES

>because

>they

>play into each other for an overall health picture. Maybe Stills is

>your main

>issue but a migraine makes you miss work and so does bronchitis,

>pneumonia,

>hospital stays, etc. List ALL doctors you have seen for illnesses you

>currently

>have, even if you saw them in different states 15 years ago. It

>proves you

>have

>suffered with this ailment a long time. List all insurance companies,

>doctors,

>specialists, hospitals, clinics, pharmacies, rehab centers, etc.

>Helpful

>resource: www.anywho.com Here you can type in the name or phone

>number of the

>individual you are looking for and get the address or phone number.

>This ends the initial application.

>

>NEXT:

>

>I received another huge packet of information with a deadline for

>return. I

>had to provide Information about my Work. I got a letter of

>recommendation

>from

>employer. Have it state that you are a good worker but your health

>gets in

>your

>way. A lot of employers prefer you write your own so they don’t

>have to think

>about it. They can proof read it and make changes. Then you give them

>a

>corrected copy, they sign and you are good to go. MAKE COPIES, KEEP

>THE

>ORIGINAL. Even though they don’t ask you for this, DO IT. It only

>adds to

>your

>proof that you struggle to work. They will want you to detail what

>you do. Be

>very detailed. IF you say you sit all day in front of a computer but

>don’t

>say

>you can’t think or that it hurts to type or sit, they may think you

>can do a

>sales job or something where you don’t sit all day. I wrote: I have

>a high

>mental stress job and despite sitting most of the day, I am extremely

>fatigued.

>After 2 hours, I am so exhausted and in pain that I must go

>home. I can’t finish my currently 4 hour shift. Some days my fever

>is so high

>I

>don’t even make it to work. I used to work 40 †" 90 hours a week.

>Now it

>takes me

>5 days to work 10 hours a week and I am in bed the whole time I am at

>home

>trying to make it another day. THINK TO YOURSELF: If I were a total

>stranger

>reading this, would I think this person has a health problem? If not,

>work on

>providing more details.

>

>AND THEN, we have the wonderful CLAIMANT PAIN QUESTIONAIRE (Be

>insanely

>specific and dramatic but truthful)

>

>a. PAIN: What type, where, when, how long, how often. What causes

>pain? Makes

>it worse? Makes it better?

>

>What medication do you take? (make sure you list ALL medications you

>have

>taken but failed. This creates a clearer picture). How much? How

>often? Side

>effects? (List all side effects from every drug you are or have

>taken, even

>the

>ones not for this specific illness. If you took it to make you feel

>better…

>EVER… then list it if you had side effects. List all medicine you

>take

>occasionally, even Tylenol) Are you getting treatment for pain? Who,

>when,

>where, phone number and address, etc.

>

>B. MOBILITY: How long does it take to get tired? What can you do and

>not do,

>Do you walk? How far? Groom? Clean house? Etc.

>CLAIMANT FATIGUE QUESTIONAIRE (Be insanely specific and dramatic but

>truthful)

>

>When and how often do you get tired or need to rest? Blah blah blah.

>A lot of

>the same questions at the other pain questionnaire. Restate what you

>already

>said to the same question on the other form. Sometimes they are

>trying to

>trick

>you to see if you say something different for the same question on a

>different

>form. Be consistent.

>

>Along with these forms came a form for a person who knows my health

>to fill

>out. I chose my spouse but was shocked with his answers. He loves me

>and is

>desperately worried about my health. He is quite the detail person

>when it

>comes

>to stuff he is interested in but he needed lots of help on this form.

>He got

>tired of the answers and just put whatever sounded right. When I read

>him the

>answers and told him to pretend he was reading about an unknown

>person as he

>heard the answers, he realized he was not specific enough. For

>instance, on

>the

>question How often does he/she do the following: Visit friends or

>relatives?

>He

>answered " daily " with no clarifying information. It made me look like

>I can

>do a

>lot of running around so I made him clarify this with an added

>statement. His

>choice was to say: " Friends and family phone her or come over to

>visit her

>because she is too sick with her fever, fatigue, pain to go visit

>them.

>Frequently she is too sick to even say hello when they

>call. " Ok, now we have a clear picture. Sick person getting checked

>in on,

>not

>sick person gadding about. Do the form with a friend or family

>member. Read

>it

>as if you were reading of a total stranger as a total stranger. What

>is the

>person reading this form going to see? On the question " Does this

>person’s

>friends visit her? They have only yes and no options. He chose yes

>and

>clarified

>with " if she is up to visiting with them " Be sure to add clarifiers

>to

>provide a

>clear picture on yes and no answers even if they only want " yes "

>or " no " as

>answers. If they don’t give you the option you like as in the

>fatigue

>question

>where they allow you to get tired after 1, 2, 3, etc. hours, I wrote

>in 15

>minutes and circled that. Make your own if you need to. You don’t

>have to fit

>their mold.

>

>Supporting Arguments

>

>Letters from friends, family, employers, fellow work mates, doctors,

>nurses,

>and so forth. Get a list of medications taken for the past 5 years

>from your

>pharmacy. Get a payment history from hospital and doctors you have

>seen to

>verify how often you have been there. Attach this information to the

>appropriate

>place on the forms you are filling out. MAKE SURE YOU MAKE COPIES SO

>YOU HAVE

>ONE FOR YOUR OWN RECORDS. Make a list of all drugs you have taken,

>why you

>stopped them, what you currently take, dose, prescribing doctor,

>pharmacy,

>script number and why you take it. It’s a good idea to keep this

>list with

>you

>at all times in case of emergency and to have for new hospitals,

>doctors ,

>clinics to copy so you don’t have to write it all out. List on your

>meds form

>all meds you are allergic to, what reaction you had, or why you

>can’t take

>it.

>If you PREMED, add that here to. Good idea to complain at each doctor

>visit

>and

>tell them you want it in your notes how you feel. To be

>on the safe side, type up questions and complaints for each visit and

>hand it

>to the nurse. It becomes part of your legal medical records. When SS

>calls

>for

>records (or anyone else either) they will get how you feel in your

>own

>graphic,

>very specific words. How great it that?

>

>Research Information

>

>Stills Brochure, Information on each of your illnesses that lists how

>it is

>disabling. Don’t forget, you CAN get disability for Fibromyalgia

>alone if you

>are in enough pain. Most Stills patients also have Fibro so don’t

>forget to

>list

>that in your illnesses if you can get a doctor to document. Articles

>from Dr

>Cush as found on the www.stillsdisease.org web site. DON " T assume the

>brochure

>can hold all the information they will need. The more you provide

>about your

>illnesses and the less they have to research, the faster you get

>approved. I

>provided an Internet printout of each of my illnesses. I made sure to

>find a

>web

>site link that spoke about how disabling this illness, syndrome,

>disease is

>to

>it’s patients.

>

>THE DISABILITY ANALYST LETTER

>

>To verify that your 37 or so doctors know what they are taking about,

>sometimes they will send you to see their own specialist. Take all

>your

>supporting arguments and research information to him too. Just hand

>it to him

>and tell him that you wanted him to have this supporting information.

>He may

>not

>take the supporting arguments but make sure he gets the research

>articles on

>stills and other illnesses you have. Tell him it is research

>articles, not to

>cloud his / her clear and unbiased judgment but to help him

>understand your

>rare

>illness so s/he can make an informed and educated decision. My

>analyst was

>reluctant to take the supporting arguments but gratefully accepted

>the

>research

>information.

>

>Within 30 days of my analyst appointment, I had been approved. =) You

>can be

>too. Happy " dead-lining " paperwork and here’s to successful claims.

>Just has

>a

>side thought, SS locally will help you fill out forms as needed but

>they

>definitely WON " T help you find or confirm supporting information and

>will try

>to

>get you to shorten you answers because they have case file deadlines

>weighing

>heavily on their shoulders. Don’t count on your attorney to do it

>all for you

>either. You live in your skin, not your attorney. He can only fight

>with the

>facts you provide him with. Make sure he gets copies of all your

>ailments and

>how they affect the normal person. Highlight the parts that apply to

>you on

>the

>printed out sheets. Makes it easier on them to find what you want

>them to

>see.

>My suggestion if you need help is to contact the most detailed person

>you

>know

>to ask for assistance. If the lawyer takes 25% of your total back pay

>when

>you

>get approved, promise to pay a bit to your

> " helper " when you get approved if you can.

>

>Really hoping this information can help all of you out there fighting

>this SS

>battle.

>

>Smiles, Caroline

>

>Reposted:July 3rd, 2006, by Lorie in Seattle

>

>

>

>

>