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Posted 3/16/2007 4:32 AM (GMT 0)
Hey ya'll

 

There are no people I trust more & spill my guts out to in the world than all you here.  So that's why I am asking (anyone) for any tips/suggestions regarding my disability trial next December. (yeah long times away)

 

From your own experience & knoweldge {for those who have been through this}, what should I be doing between now and December?

 

Should I start keeping a tight daily journal on what I can & cannot do each day?

Should I request physician progress notes?

Should I get a type out of every single MD visit/chemo session I have had in the past 3 years

(Should I like be video taping anything? tongue )

 

I have pretty much EVERY single bloodwork/UA/lab/film I had taken in the past 4 years.  I even think I have all of my receipts from doc appts. too.

 

Also have all of the medical stuff from Medicaid & GA (there was a lot of Dr.'s notes & Dr. opinions on that).

 

My point is:  I'm scared to death & feel hopeless about this.  I have already been denied 4 times.

Their reason why I was denied all 4 times?:

 

 

"We have determined that your condition does NOT keep you from working.We feel with treatment your condition will improve in the next 12 months (that didn't happen this was Nov. 2005!)

You do have pain however, it does not limit your ability to move about & use your limbs.( confused confused confused )

Considering your AGE, EDUCATION, job skills, training, work experience and the fact that you are not blind, we feel you are able to earn a substantial income by doing sedentary work.

There is no condition which significantly limits your ability to work ".

 

There are more demeaning things they say about my age & education as to why I cannot work.

I just feel that they will keep denying me till' I'm 50!  I don't think they wanna pay out for a 26 y/o!

 

In short, if I were working & obtaining a "substantial income" between October & now I would have only been able to make it to work possibly 3 or 4 times in those  months. So how many days is that I had to call out sick?

Even typing on here is very very painful & can only type for a short few minutes.

 

Any suggestions wouldbe helpful.  I know as well...get an attorney.

Thank you.

erin

 

 

Posted 3/16/2007 5:59 AM (GMT 0)
Erin,

Sorry to hear that you have been denied so many times. I don't have any suggestions as I have not dealt with that yet. I bet if one of the people deciding you disability had RA they would be more helpful. Dealing with beurocracy sucks! What is crazy is our system here is so much WORSE then in alot of countries outside the US. We are supposed to be the greatest country in the world but we cannot take care of people when they are disabled?!

I will pray for you
Posted 3/16/2007 8:03 AM (GMT 0)

Erin, With your bibliography of illness and meds Im surprised you have been knocked back once let alone 4 times!

I live in Australia and I was not aware that I could apply for a Disability pension (as we call it here). I applied for a part DP as I can still sort of manage a few days work. I was granted this after my GP and GI filled in the appropriate forms without even having to see one of their Drs, as they classify Crohns Disease as having met their criteria (I also have AS). Our DP is income tested (Im not sure if US is) and I dont receive any extra money, but do receive discounted meds and some utility bills, it all helps in the long run. I was prepared to fight for the DP and had armed myself with every test and documentation of my illnesses, I think the list of tests and notes you have would be more than suffice - and the Attorney.

Im sorry Im not much help but I am gobsmacked that you have been knocked back that many times.

I will keep an eye out for you to post in December for some good news.

Take care

Jo

Posted 3/16/2007 12:45 PM (GMT 0)
Erin, You need to make sure that all of the pertinent medical records have been recieved by SSA. From what I understand, the hearings are all pretty much the same. You sit there and the judge grills you. It might work to your favor to bring every prescription bottle with you. Then you can line them up on the table and explain just how many meds you make.

If you get nervous under pressure and probably even if you don't, you should make some notes for yourself to review just before the hearing starts. reading from your notes is probably not in your best interest, but being able to go over what you would like to say ahead of time will be helpful. remember, your illness is not the only contributing factor here. many of us are on meds that add to our inability to work. That would be especially true for you in your filed if your meds include things like narcotics or others such as Neurontin, which is well known to cause brain fog or forgetfullness. While talking to the judge, you want to emphasize what life is like for you on your worst day. The average day isn't what keeps us from working, so we need to talk about when things are at their worst.

It would be helpful for you to follow up with every Doc in your arsenal at least a few times before the hearing. Regular appts is essential. While you're with the Docs, talk in great detail about your limitiations. Make sure that these are documented in your medical records and get copies if possible. You'll need to know specifics of your disability and how it limits your ability to work. How long can you sit? Stand? How much can you lift? Which activities of daily life do you need assistance with? Can you cook? Clean? Dress? attend to personal hygiene? etc.etc.

I saw some interestin threads regarding disability over onthe Pain Forum and you might want to ask this on the Crohn's Forum too. I'm sure there have been quite a few in both places who've been through this process.

I am just preparing to get my records together and apply for the first time. I'm hoping that the info others have shared with me will be to my benefit.

Good Luck to you. Iknow you can do this. Just remember not to let it get you riled enough to flare. That's the last thing you need.
Posted 3/16/2007 12:47 PM (GMT 0)
PS Have you been treated for depression? That can play a significant role in the SSDI process. At least that's what I've been told.
Posted 3/16/2007 4:23 PM (GMT 0)
thank you!  so far a few things i've read are new & helpful. thanks Jo & Zeek. thanks Keah! for that additional info.

 

i really believe it's age discrimination!  i do. they keep bringing up my eductaion & skills????  exactly what do they expect me to do from bed? (that's legal? LOL) even typing/work from home wouldn't work (most times can't even type & sit up)

 

oh & yes last summer when i threw a fit @ the doc's office when forced to go to the ER...i was in such a resistant/panic state that a psychiatric counselor had to see me! (i was feaked out because i couldn't miss class! that's why i was panicking about having to be admitted to the hospital to be treated for RA pain! if i was absent they would fail me!)

so i did say i was depressed.

my doc put me on Trazadone too a while back to try to help me gain weight...that's an antideppresant.

 

this is just soo crazy.  it's so humiliating to be like this.  i always have worked since i wa 11 y/o.  all through highschool i worked full time & even had 2 & 3 jobs at the same time!  i was a machine!

i really never thought it would be like this.  even as a kid i supported my mom financially & paid bills & never had to ask for anything from my parents.

 

all of my work experience thay have on file...so it's not like they can say & think "oh this person just doesn't want to work."  i'm depressed cuz I CAN'T WORK! this is the first time i my life i'm without an income. (had to leave work in May 2005)

 

ugh...ok, venting is over. thanx for listening!

i'm open to any other suggestions.

 

thanks so much

 

 

Posted 3/16/2007 11:19 PM (GMT 0)
Oh Erin I am so sorry that they have put you through this!

You and your Dr must be on the same page. Does your Dr. agree that you cannot work? Is he/she totally behind you? Also, it is your responsibility to prove that you cannot be gainfully employed which means that you cannot make $830 per month at this time. Do you have representation? I absolutely recommend it. You are correct that your age is having a detrimental effect on their decision. It is wrong but true. At age 50 they deem that it is not worth retraining us.

Here is a great site and under Social Security Disability a wonderful lady named Carolyn has a brother that is an ALJ so she is superb in assisting us in proving we cannot work and knows what SSDI needs to hear. She has samples of forms that you can fill out and get filled out to assist in this process.

Butyoudon'tlooksick.com

Take care.
Posted 3/17/2007 1:18 AM (GMT 0)
I was lucky. I got ss dis the first time I applied, but I applied over the phone and talked to a real person. You need someone on your side. Does your doc feel you could get disability? As far as I know, they go on your docs opinion. Also, if you see many docs, get all your records. Feel confident, stand with dignity and tell them like it is, as you know how you feel. I would say a prayer and look straight at them. Shaley has a lot of great ideas. The main thing, get your doctor on your side and tell him that you just can't work. Rest, and try not to think of this too much as Dec. is a ways away. Let your doctor help you with this. They know how it's done.
Posted 3/17/2007 3:22 AM (GMT 0)
Hi Erin....I worked as an SSI advocate for five years and I have done at least 200 hearings. How can I help you within the forum rules? I have some thoughts and I am willing to share them. Would an email work better for you or posting on the forum? You can do this and you don't need a lawyer. The system is designed for the lay person. When is your hearing. Have you requested to look at your file. That should be requested as soon as you get your notice as they may need to mail it to your local office. Is this a hearing before the administrative law judge?

Posted 3/17/2007 5:06 AM (GMT 0)
Harley Diva, I'm in the process of getting all my ducks in a row to apply myself. I'd be very interested in any helpful hints that you can pass along. I've been through the process with my Mom and she was approved rather quickly, but as Erin mentioned, I'm concerned that I may face denials primarily because of my age.

Erin, did you find the thread in the Pain Forum? I will dig it up if you couldn't locate it.
Posted 3/17/2007 5:59 AM (GMT 0)

Erin,

I doubt that your age per se has much to do with your pervious denials.

You do have pain however, it does not limit your ability to move about & use your limbs.( confused confused confused )

Considering your AGE, EDUCATION, job skills, training, work experience and the fact that you are not blind, we feel you are able to earn a substantial income by doing sedentary work.

That is the almost exactly the same statement on my denial when I applied at age 56. I don't know if you are applying for SSDI or SSI and those two are very different. I do believe that SSI is somewhat tougher to qualify for. Also, you said you were in school at the time you last applied. I do believe that they will that somewhat equivalent to working situations. IE - If you can sit in a classroom, you can do a sedentary job.

Don't get discouraged - just make sure you have a good disability attorney.

Posted 3/17/2007 10:30 AM (GMT 0)
Erin, they do think that if you can breathe in and out and make it to the bathroom in time 3 out of five times, you're ok.  I was denied twice and got a SSD lawyer the third time.  As soon as the judge saw my hands it was over.  They're that gnarled.  Good luck, Girl.

Posted 3/17/2007 4:18 PM (GMT 0)
Diva.. YOU'RE A GODSEND!  If you could, would you shoot Erin and Keah an email with the information you have?  That would be AWESOME!  THANK YOU THANK YOU THANK YOU! 

 

This is what we do.. take care of one-another... you guys are GREAT!

Posted 3/18/2007 3:11 AM (GMT 0)
I would love that info on disabllty as well. please. also any one have info regarding meds. we have some insurance but its not that great , as Ive been hearing the meds are pretty expencive.
Posted 3/18/2007 2:24 PM (GMT 0)
cool  Yes I would love that info too, My husband has been on me about starting the process cause my body has been getting worse.  Any help is appreciated.  thanks

 

Posted 3/18/2007 5:40 PM (GMT 0)
thanks all very much.

Harleydiva...i will be in touch, thank you so much

 

i can't use my hands, so am sorry about not replying.  extreme pain & problems w/ wrists & hands.

few days maybe better.

:-)  erin

Posted 3/21/2007 4:05 PM (GMT 0)

Savanna thanks for the long description of your SSDI process.  I am at the Judge level (3rd level in my state) and awaiting a decision for an "Award of Record".  My attorney filed for that due to the long distance to travel (over 75 mi) for a hearing.  If the Judge prefers to see me SS must pay for the trip.

I sent in a long letter to the Judge describing in detail each and every moment of my day prior to RA and after RA about 5 pages long.  I also did a physical function chart as well. 

With RA usually our hands are crippling and you are correct, I know of no employment where our hands are not needed.  The burden to prove our inability to be gainfully employed is on us.

Today I have a Dr appt. to update the SS Physical Function form as now it is about a year old and things are worse.

Take care.

Posted 3/22/2007 12:12 AM (GMT 0)
Savanna according to my rheumy the RA is "under control" but not in remission. I learned a lot this week. Under control means swelling and stiffness are down (damage comes from the swelling) but as he told me pain and a little swelling can remain the same since I do have RA and it is very painful. Here is great info regarding remission:

ACR Classification Criteria for Determinining Clinical Remission in Rheumatoid Arthritis

5 or more of the following present at least two consecutive months:

a. Morning stiffness < 15 minutes
b. No fatigue
c. No joint pain
d. No joint tenderness or pain on motion
e. No soft tissue swelling in joints or tendon sheaths
f. ESR (Westergren methold) < 30 mm/hour for a female or 20 mm/hour for a male

Exclusions: Clinical manifestations of active vasculitis, pericarditis, pleuritis or myositis, and unexplained recent weight loss or fever attributable to rheumatoid arthritis will prohibit a designation of complete clinical remission.

Reference: Pinals RS, et.al.: Arthritis Rheum 24:1308, 1981.


I only meet the last one but blood tests and x-rays showed no further damage. I was Dx'd in Sept 05 but firmly believe that I had it for quite a while. You know how we just keep on saying, boy that sure hurts but a little rest will do the trick, lol. I thought that if the MTX, Enbrel etc. were working that = no more pain, NOT. I also need to remember that I have OA and FMS .

Savanna, I sure hope the Orencia works for you. Your Dr won't give you pain meds? Maybe a pain control clinic? My Dr is also changing the oral MTX to the injectable. He said that I might not be absorbing enough of the oral.

Take care.
Posted 3/22/2007 2:50 AM (GMT 0)
hey it's me,

 

i started this thread but have not written much...but thank you all for the tips, info & personal stories; it helps to have read them.

thank you especially to Harley...i will be in touch.

 

i can not type/use my hands much for the past week (RA acting badly in wrists & hands) but have been reading.

 

thanks again.

sincerely,

erin

Posted 3/22/2007 3:20 AM (GMT 0)

Erin,

I hope you feel better soon. I really don't have anything else to say beyond what was already said. I was denied twice and stopped applying for now. I was sent to a specialist who was supposed to help, test, and confirm diagnosis and he chose NOT to. I was too sick and tired to push it at the time.

You list a lot of options, and personally, I say it can't hurt (your case, not your joint! tongue ) to do most of your list....keep as many records as you are physically able and have everything ready to go. Start now getting things organized so you don't kill yourself trying to do it closer to the trial date. Some of that information will be good to review and have fresh in your head at the trial, even if it's not something you'll bring to the trial as 'proof' of what you're going through.

One thing I did notice on my 2nd denial, and I'm not sure how to make sure this doesn't happen - it looked like they didn't even get some information they were supposed to (possibly used claim #1 info?) and they screwed up entering in my information in their system. The response as to why they were denying me didn't make sense at all!

Good luck!
*****

Posted 3/22/2007 5:34 PM (GMT 0)
CaMama did you have representation? Are you still working? One reason that I went ahead and file in 2005 was that due to Arthritis I stopped working in 2001 and in order to qualify for SSDI one must have worked 5 of the last 10 years and I had 8 months left or I was going to lose the benefit and I worked for 30 yrs paying in. I spent that time trying to get back to physical health but nothing was helping so I went ahead and filed.

Is it too late for you to appeal the second denial? One very important thing is that our Dr's must be behind our disability claim and I am so sorry that yours turned out not to be.

You are so right about the paperwork. Even though I hired a firm to file for me I would call SS and go over all of my Dr's files with them to be sure it was in my file which is paperless by the way. I can't remember how many times I faxed paperwork that was sent to SS but when they looked in my paperless file they were not there. Everything is sent to one SS office and gets scanned into the computer. I don't know what they then do with our paperwork.

I would help in any way if you want to pursue your case.

Erin I sure hope that your hands get better and good luck on the filing.

Take care
Posted 3/26/2007 3:25 PM (GMT 0)
I've been in and out of work because of illnesses for the last 3 years and have lost multiple jobs because of it. Last Spring I took a part-time contract position for 6 months. That was after a 14 month haitus from being sick.  I don't know how long you have to appeal, but it was a little over a year ago that I was last denied.  My PCP was the one who initially said I should apply.

******

Posted 3/29/2007 6:01 PM (GMT 0)
Harley Diva, I would appreciate any info on ssdi you can send as well. I am waiting on a date for Administrative Law Judge. Trying to get anything and everything I may need together now. Anything you can send would be greatly appreciated!!



Crohns Disease, enteropathic arthritis, anxiety, panic attacks, depression, GERDS, hiatal hernia, Hidradentis suppravera, diabetes2, allergies, high bp & cholestrol, edema
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