for Laughing Bear and Deb

[Guest guest]

Hi Laughing Bear (which I totally LOVE!! I found a rock by my river that is

in the shape of a bear's paw. To me it is very special and meant something.

I tied a piece of turquoise to it and put it on my small " altar " space so I

could see it every day. What a wonderful name to have). Anyway, I discovered

this too, that moving around is really helpful, and I have to remember to do

it, even when traveling in the car or going to a long concert or something.

It seems to me like, for me anyway, Fibromyalgia has made me HAVE to be

conscious about EVERYTHING I do, because everything has consequences, even

my thoughts, my reactions, everything. In that way I think it is a gift,

because it can help you be a really AWARE person; in another way it is even

harder, because that sets you apart from others even more! I'd encourage you

to keep track of the stuff that seems to help, even in the tiniest way, and

what seems to flare you up, even the smallest things. That gives you some

sort of control with this seemingly out-of-control condition!

Rasmama

>

> Subject: Hi from new member

>

> I have fibro. and have had it now for around three to four years. I am

> currently on disability because of it. I am eager to connect with others who

> are dealing with the day to day stuff and winning. So far the best thing I

> have found is for every thirty minutes sitting,I need to get up and move

> around for at least five minutes. This has helped so very much. I wish I did

> it more,as I feel my legs swelling from being at the computer way to long. I

> am fifty plus years old,have two grown daughters,three dogs,two cats and

> thank goodness a beautiful place of my own. The dogs get me outside and

> walking whether I want to or not. I will probably lurk awhile.Thanks for

> being there. Bonnie Murdock/laughingwillow

> sent with peace and love

***

>

> Subject: Hi, I'm New

>

> I'm Deborah, 52, just three days ago finally diagnosed with Fibro

> (knew it all along!). I'm up all night with insomnia, so did a

> search and found this site. Now I need to find out the latest on

> getting SSDI for this disorder.

>

> Do they require more than one Dr.s diagnosis? Does he need to fill

> out specific forms, or will just his notes work? Do I need to have

> the diagnosis a longer time, or will showing I've had the symptoms

> over 25 years but just now got diagnosed do it?

>

> I was looking to see if there's some where on this site to find this

> SSDI information, but couldn't find it.

>

> Thanks for any help,

>

> Deb

Hi Deb

I'm new too. I can only speak from my own experience, and everybody's is

different. How it went with me was, I filed for disability -- I'd had Fibro

for several years but I was in the midst of a divorce and my ex refused to

help me in any way, so I needed to try to get some help from somewhere

because I couldn't keep a job and couldn't even do my self-employment gig

any more. They sent me to a couple of doctors they chose, who of course

reported I was completely healthy. Even papers from the Mayo Clinic saying I

had Fibromyalgia didn't seem to carry much weight with them. I filled out a

million forms about what I could and could not do... very difficult to

answer, you want to say, well, I can do that sometimes, on every off

weekend, when it's not rainy, and I haven't done anything the day before...

but they don't want answers like that. So don't feel bad about just saying

no, I can't do that even if it's only true part of the time. You will get

turned down I think it's 3 times, and have to fill in the paperwork over and

over again, so keep copies so you remember what you said.

They go by crazy criteria. They see if you have paid into Social Security

for enough months in a ten year period to qualify, first of all. It's best

if you have a lawyer (legal aid or your local disability association might

have one that will work on contingency or really inexpensively); they can

hold your hand and can also really help you understand the process and what

is important and what is not. Usually what you think is important ISN'T, and

what is important is nonsensical... it's a bit like Alice in Wonderland.

Get copies of all your medical records. You have to have been completely

disabled because of THIS condition for a year. It helps to have some doctors

that will write letters for your file saying there is no way you could hold

down a job in your condition and they don't expect it to improve. Yes, they

will have to sign some forms. I was scared about this but found that my

doctor was willing to do it. If you are still in the process of the

year-of-disability, go to the doctor a lot and complain about EVERY symptom

you have, exaggerate if you have to (remember those days when it WOULDN'T be

an exaggeration). Don't put on makeup and try to look great. Look as crappy

as you feel. Go to several doctors and have them give you the " tender point "

test for diagnosing Fibromyalgia. Build up a medical record miles long in

which you complain of extreme pain and inability to do even the simplest

things, and be ready for your physician to seem fed up with you. Who cares

if it helps you in the long run.

If you've had to quit a job because of your condition, document it as well

as you can, try to remember people who could testify if necessary that

they've heard you complain about your symptoms.

Many times along the way I wanted to give up, and that's what they count on.

Most people just give up and forget about it. But something in me said to

persevere, what did I have to lose. So I just kept filling out the forms,

going to the doctor over and over, everything I needed to do. It was hard

because I was so fatigued all the time I didn't FEEL like going to the

doctor and hearing the same old thing. It was hard for me because I was self

employed, and I had to sell my business because of my illness, but it was

sort of my word against nobody's. And I'd never had a " real " job, just

self-employment, so I thought for sure I'd never get it at all. But I did

persevere, and finally, almost 2 years after I first filed, I got my hearing

and the judge gave me SSDI. He said he thought I should also receive the

other type of disability that isn't income-dependent, but that I hadn't paid

in for enough months in the last 10 year period, so I couldn't get it.

I also got Medicaid, and usually you will get BACK pay for the time covering

from the first date you are declared as having been disabled (you tell them

that -- I had to have my lawyer's help in figuring it out because of the

matter of time I had paid in, etc.). But I couldn't receive back pay because

I had accidentally forgotten to take my name off my teenage daughter's car

title, so that put me over the " asset limit " by about $10. So I was stuck

with this huge medical debt from the emergency gall bladder surgery I had

just had. (off with her head!)

But anyway from then on I got a check every month and all my prescriptions

and doctor visits and hospital stuff was covered by Medicaid, thank heaven

because there ended up being a LOT of it. I'm getting married in a few

months and that will disqualify me again, so I'll be out of the system, but

I'll be glad. You have to be sure to keep copies of EVERYTHING, and there

are all kinds of rules about how much income you can have in a given month,

how much in terms of deposits can show up on your bank statements, etc. You

have to send them your bank statements and check register every month and

tell them if any little thing changes -- if you move, or somebody moves out

of your house, or you get a part time job, or whatever.

Right now they are reviewing my case and requiring another mountain of

paperwork -- if I didn't have my fiance to help me it would drive me insane.

But I have to say it has been worth it to me having the SSDI for the last 4

years, I don't know how I would have survived without it. Anyway, that's all

I can think of to tell you right now. Just keep persevering no matter what

anybody says; don't give up until a judge tells you to your face that you

CANNOT receive it. Sometimes I think it's just this little game of who can

deal with the hoops they make you jump through -- whoever can get through

all of them wins. I have known people who got BACK SSDI and Medicaid after

finally getting through the system and being approved, and they got a LOT of

money.

love,

Rasmama