Tori- SSI / SSDI

[Guest guest]

Hi Tori-

I recently went through all of the SSI /SSDI stuff-

Recently being 2 and a half years of filling out papers- being denied once- (

while in wheelchair- unable to even walk if I had wanted to at that time )- and

then off and on for approx a year- out of the wheelchair , using walker- then

cane and back again approx 3 or 4 times- from wheelchair to cane )- I appealed

of course- and finally after what seemed like forever- yet some do have to wait

longer than I did ---- I had a hearing in May. I live in Michigan. I do have

a paper typed up here somewhere that I will send to your personal e-mail if you

are interested in seeing how it went- not sure if it would go exactly the same

way there as it did here but pretty much near the same I'm sure. You mentioned

that fibromyalgia would not be approved and I don't want to depress you moreso

but they told me during the hearing here that EDS/VEDS was NOT enough by itself

to get approved either.. They are making it harder and harder to get approved

.... , I noticed the biggest thing that caught the Judges interest was

medications and sleep pattern. When asked how many times I have to lay down per

day- my answer was approx 5 times - which is true most days. I am on 120 mgs of

morphine and lortab 10's as needed for breakthrough pain with 10 other meds for

edema etc.....

I waited several more months and finally received papers stating I was fully

favorable - and then again another few months before I even heard from the SSI

dept- which btw was just a few days ago- and then received a paper in the mail

that said I had 10 days to contact them to see if they would EVEN consider

paying benefits to me and they included a phone # to contact them to make an

appointment to go over assets and income .

I am lucky in that sense as She was very nice to me and said due to my

condition we could do it over the telephone. So we did talk most of it over but

now , of course, I need to send in some extra papers.

Proof of change of name-due to recent divorce

Proof of assets

Proof of checking acct closing since I filed 2 yrs ago-

Along with some other info that she needs. Then they will decide from there if

I am going to definitely receive benefits but she seemed pretty sure I would be

due to not having income other than FIA ( forced to go on due to divorce at time

of mishap )- and assets amount to O.

All I can say from what I've been through with them is focus more on how you

are feeling today- not the dx- they told me that the dx means nothing, how it

affects your daily living is what they go by. I am speaking for what I went

through and what happened here in Flint, Michigan- so hope you don't think that

I'm stating what I went through- you too- will go through- just sharing what

happened so that you might be able to use some of it to help you get your

benefits.

I should know within a week if she will approve it after seeing my papers that

she wants- if so- then the benefits will be direct deposited and then my FIA

help will be lessened.

Wish you the best of luck..... it is so frustrating to go through all of their

paperwork and be denied even once- let alone twice, ( you stated that you are

going through a second appeal)

Hugs- TJ

I've been on before (25/f, married, HEDS, upstate NY) and somehow

got booted/email kerplutzed on me. I have some questions about

getting a dr to completely diagnose me with HEDS, as I can't seem to

find one in my area. AND... the dr I just saw (rheumatologist) seems

to think I can't have EDS as I don't have stretchy skin, and it's

too rare. I'm planning on (re)trying for SSDI, and I need a clear

diagnosis as I've been waiting to hear on a decision about SSDI with

fibromyalgia as my dx forever, and I know it won't be approved (2nd

appeal). So any help would be appreciated. I live near Albany, NY

but could go as far downstate as Westchester or upstate as Warren

County. Thanks!!!

Tori

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca