EDU: Building a Case for Social Security (Part 1)

[Guest guest]

There has been a lot of talk lately about Disability. One good thing to keep in

mind EVERY time you go to a doctor of any kind is that you are building your

case for disability. Be sure to keep a journal of your temps and how you are

feeling as well as coping on a daily basis. This is especially important while

getting diagnosed and there is a possiblity that you may need disability.

At each visit with your primary care doctor, give them a copy of the latest

notes in your journal for your records the doctors have in your file at his

office. This makes your own statements part of your legal records. It makes sure

that your symptoms are detailed as you want them to be, not clinically notated

as " Patient continues to feel poorly " or some other non descript reference.

Type up a list of questions. Good ones, like.... How long do you think it will

take to get me stable enough to get my life back? Do you think the fevers will

ever go away? Since Stills is rare, can you tell me how long it will take to go

in remission or how long I can expect to stay in remission before I end up too

sick to work again? Do you think I will be well enough to work soon? How can I

prevent flares from happening? Could Stills be the reason I have had major

headaches regularly all my life? Will the pain and weakness, fatigue continue

after my fever stops? Will I always have to take so many medications to try to

stay on my feet? Things like that.

Remember, you are building a case. Asking your doctor to answer the questions

for you and to include them in your file does two things. First, It shows

genuine concern about your health, frustration over being sick, and interest in

doing everything possible to return to good health. Second thing it does is that

it raises the same questions you asked in the minds of the " other " medical

records examiners. You know, the folks like the insurance companies and

disability judges and examiners.

From being involved with a lot of customer service issues over the years, I know

from experience that decisions are made based on the information presented.

DON'T let the only evidence presented be from a doctors point of view. It's your

health, your life, your sanity... your words and notes should be included. If

they don't know how much you suffer, why would they award you anything? For

some, if you read your own files and they were about someone you didn't know,

what would you think if you had to decide about awarding them disability? Think

about it.

You are your best advocate. MAKE SURE you regularly ask lots of questions and

give your doctors a copy of your list of questions for your file. Tell him / her

you want it put in your file for future reference. Keep copies for yourself.

That way, even if the doctor fails to answer or have answers for the questions,

they are still in your records. Give a list of questions related to each doctor

to them personally. No need to give the same list to each doc unless you want

their opinion on a specific question. Ask neurological questions to the Neuro,

Cardio questions to the Cardiologist, Rheumatology questions of the Rheumy, etc.

BUILD your own case for disabilty, in case you need it in the future.

As far as the Disability doctor appointment, I ASKED if I could bring notes for

him and was told that they send you to a " new doctor " for an evaluation that is

" fresh " as in... he does not know your case, has no notes for the most part and

can see you with an open mind. He makes an evalutaion based on what he finds to

be wrong, your overall attitude about getting better etc.

What I DID do was print off articles from the StillsNet web site that applied to

my illness. Specifically, the LONG article from Dr Cush about Stills, the one

that spoke of Stills and disabilty expectations and a Stills brochure. Stills is

a rare disorder. We can't expect the doctor to know what we face daily. So, when

I handed the information to the doctor, naturally he refused... saying he wanted

to make his own determination. I naturally said " Stills is a very rare disease

and very little is known about it. For your own knowledge and education, and so

you can help others like me you may see in the future, I printed off material

about the disease from the one of the worlds experts on the subject. I'm sure

you'll find it quite interesting. " Obviously, he took it. Of course, I planned

out what to say since I knew most likely he would refuse any information.

It's not a bad idea to print these types of articles and take them to your

primary care doctor, your rheumatologist, etc. They put them in your file and

then, maybe you won't get sent to the " unbiased " doctor for determination, and

then again... maybe you will. I did. Educating doctors is part of our job. It

makes life easier for the Stills patient coming in behind you.

I was approved my first time through with Disability but I did have to see a

doctor they sent me to. Read ALL of the information you send to them with

someone else. Make sure it is clear, understandable and detailed. DON'T assume

they can or will read between the lines. Assume that if you don't tell them

something, they don't know. Doctors only make brief notes. Some notations are as

brief as " patient returns with the usual symptoms, trying ___ drug to see if it

helps. " How on earth will that help you get benefits for your symptoms?

Even if you never plan to get sick enough to be on disabilty, build a case for

yourself in case you need it. Even if your mental health records are presented,

remember that the disease affected your life to the point you needed mental

health care to cope. Frustration over " losing " your life in many respects is

also an indication of how well you are doing physically. Is shows you want a

life and are doing everything you can to try to get it back. Some may look at

needing a psychiatrist or psychologist as a bad thing but it's not. Needing one

of these guys (or gals) simply indicates you have had a tough life or are

facing traumatic changes. Good mental health is NOT a bad thing. Smart people

know when they need help with it and get it. That's a mark in your favor.

Well, this got longer than expected but I so much want all to be approved for

disablity as needed. Knowledge is power. Get as much of it as you can about your

disease so you can fight back better. Fight back as in fight the disease, the

side effects of drugs, the system, etc. Let's slay a few dragons today! LOL

Smiles, Caroline

(Beautiful Southern Oregon, USA)

We may not be able to change the direction of the wind, but we can adjust our

sails.

May you have enough happiness to make you kind, enough trials to make you

strong, enough sorrow to keep you human, enough hope to make you happy.

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