The journey so many of us share...

[mac1ntosh]

I've recently applied for Disability benefits. And, like so many of us, just recently was denied.

Which leads me to think, that maybe, just maybe, they're right. I am filled with doubt, am I disabled "enough"?
Do I "deserve" to receive benefits for no longer working?

I have an appointment with my lawyer next week, to start the appeals process, but this journey definitely has me questioning EVERYTHING.

Can anyone who's gone through this offer some insight? Am I doing the right thing? I feel like maybe I could work, just not full time, so am I heading down the right path?

Thank you for being here.

Jody

[Thinkimjob]

I wish I knew. Our system down here is so different. You don't need a lawyer, just a doctor to get a disability support pension.

And you're allowed to work 21 hours a week. Your benefit drops, but you get to keep a lot of helpful discounts, on electricity, rent, medicine. Can you do something like that in the US? You're not going to get rich, obviously, but at least you can keep a job for as long as you can.

Superannuation (sort of a compulsory saving tax every employee has to pay) funds do pay out if you can't work anymore. I think they're harder to deal with, if the constant no-win no-pay ads for law firms are anything to go by.

And they won't pay out if you can work, at all.

Don't second guess yourself, you've had this crappy disease for a long time, and you've kept working. If you don't deserve some assistance, who does?

[mercadies25]

Oh my dear Mac, please don't question yourself. This system is totally screwed up.

I would and could rant about this for hours.

I worked since I was 14. At 18 I was working a full-time job and a part-time job. I raised 4 kids as a single mom. All of them played sports etc... I was a manager of a deli/bakery working 50 hrs a week and part-time for Hallmark cards to survive and raise my kids and pay my bills.

I am now dx with: MS,FIBRO,HYPOTHYROIDISM,DEGENERATIVE DISK DISEASE,IBS,DEPRESSION AND CHRONIC FATIGUE.

I was denied after going to my hearing. Wow talk about pissed off and depressed. If I could work I definatedly would. I even tried to go back part-time, my fatigue hit my legs got weak and I fell.

You are not crazy. If you don't have this disease you don't get it.

Keep fighting. After 2 days of crying and just wanting to give up I really got pissed. I am going to fight. I earned that money I worked for that money and I deserve that money.

Good Luck to you!!!!!!!

[pookalily]

Don't give up, Jody. The "game" is to deny, deny, deny, then allow.
I'm not a lawyer, or benefits person, but I was my sister's conservator (she had a lot of issues, but not MS-- I'm the one with MS) and tried to get her on MediCal (California's version of MedicAid). There was a lot of hassle. I even had to appear in front of a judge, though I did have an advocate to plead the case. I had to apply 3 times and the third time was the charm... after over a year of trying. Just make sure you have every duck in a row and follow the directions to the letter. You may still get denied, but go right ahead and re-apply.
Google on "disability rights advocate" you may want to add your state to the search criteria. You might find some good info by researching the topic. Like anything else, knowledge is power and the more you know about your rights, the better chance you have.
Good Luck!! and hang in there!

[kelm10]

relapsing and remitting

The unique thing about MS. Things relapse and remit.

Think of your worse day. Can you go to work daily consistently to maintain a full time position. Most likely no.

SSDI wants you to not file the appeal. If you honestly believe that you can not work on your worse day.

Say, that you finally do get approved. And............ you can consistently work full time. There is a return to work program to show you and SSDI wether you can or can not.

Also, you can work part time while receiving SSDI. You can earn up to $1000 per month.

[laurasari]

For me I was denied the first time. my cardiologist. Not my Neuro was the most surprised. I was advised to try again and if they deny me again go to a lawyer because they take a lot I did and they approved me. People say that is very common. good Luck
Laurie

[Polifax7]

my two cents

I just had my hearing on Tuesday and the attorney said I am approved. The hearing went really fast and they didn't ask me any questions.
Here is some things to think about..can you afford to not work for two-three years the SS process may take? I was lucky in that I had a LTD benefit from my employer. Otherwise I am not sure what would have happened.
Does your neurologist support your SS application? because it seems pretty grim otherwise, my opinion and legal advice that I received.
If I could do it all over again I would have hired an attorney (I was represented through the advocator group as part of my Long Term Disability Companies recommendation however they did not give me a lawyer until last Friday..and my hearing was Tuesday).

For my case this is what I think helped:
My Neuro had completed from NOLO Neuro the SS disability listing criteria for MS...I actually met all three, but you only have to meet one (lucky me lol). I firmly believe that if I had done this in the beginning my case would have had a much greater chance of approval.

At the hearing SS had a medical doctor, a physciatrist, and a vocational counselor. I was terrified that if I had to answer the ADL questions "why yes I try to do laundry a few times a week" they were going to point to me "faker..you can too work you lazy bum"..or some such thing. But they didn't even get that far. The judge swore us in and asked the medical doctor if he believed based on the evidence that I met the listing criteria...he had compiled a list of my MRI and test results and went through them. He said no question that I met all three and even some other listing (I didn't catch which one) and that in considering Activities of Daily Living the tests results support that I have residual functional deficianceis in my bowel/bladder and chocking so that "even these basic functions are affected". That was pretty much the end of the hearing. It all centered around if my MS met the listing.
When I first applied I truly thought just having the diagnosis would be enough, but it definitely isn't.
Also I think it helped my credibility that I worked from 1999 to 2011 with the disease and only stopped when I had to.
Just one other point that I think consistlantly see your doctors and keep a copy for your own records.

In terms of feeling like you could work part time, I loved working and tried to volunteer a few hours a week, but failed due to fatigue. If you can wait for SS, wait and then try a work attempt.

Sorry so long!

[mac1ntosh]

Thanks everyone for your opinions. I am buoyed by the fact that others have "been there, done that".

Seasha brought up a good point, at my worst, I couldn't drive, walk, or process daily life, while some of that has subsided, residual cog fog hangs on, and is invisible to many.

Meeting with lawyer this week to start the appeals process.

Thanks for being there for me. I'm humbled.

Jody

[mac1ntosh]

update

Just wanted to update my situation... Had followup with my Neuro, things have gotten worse, but not THAT worse. WTH?

I have 2 new lesions, but they're not enhancing (active?), but fatigue remains my worst enemy. Is there really NO meds for that?

He recommends another trip to Mayo in Rochester MN, which I'm inclined to agree, because he's a Neuro, just not an MS Specialist Neuro. and would acquiesce to what they recommend as far as treatment plans. His advice, stay on Betaseron.

I also have some random numbness that comes and goes, and vertigo/dizziness, that is worse when I haven't had a good nights sleep.

Every day is truly different. I am participating in our local MS walk this weekend - hope I get through at least half of it!

Walking for a CURE!!!!!!

Jody

[kelm10]

info

Surprisingly when I had my hearing, my lawyer (who was also a lawyer from my LTD company and we did not meet until the day of the hearing.) took me through some questions that I thought I had answered correctly. Well, the cognitive issues did show up with her questions that she asked in front of the judge, my answers were not right. When she then questioned me further, more cognitive issues showed up.

There are medications and supplements that may help. It is more a trial and error process that is going to work for you.

I believe my lawyer and I had exchanged a few emails, but, not that much.

[pennstater]

I was denied both LTD and SSDI despite 28 year steady employment and neuro, neuropsych support. They both said, as did both lawyers that unless terminal or really severe, initial decision is deny. They know alot of people can't afford to appeal I am appealing both and know that neither will resolve this year. ALJ hearings for my area are 12-14 months out for SSDI.

I had the same conversation with both docs. While I some times feel like I could work part time, they reminded me that I have to be able to have consistent and predictable good days. The lawyers both reminded me that even if I try, I lose my LTD benefit. And for SSDI, if I work part time and exceed the monthly amt, not do you lose SSDI, but the part time wages then are factored into your SS retirement calcs. If on SSDI, wages are used prior to SSDI. So retirement benefit will go down if work part time. the US system is so screwed up.

Good luck to you.

[Thinkimjob]

Australia is about to make it harder to get the disability pension, though I'm sure I'd qualify no matter how hard they make it.

They are going, eventually, to make people see an 'independent' doctor, to verify their condition, and their inability to work.

Good luck with that, Prime Minister. I've got three neuros, a doctor, and a MS Specialist on my side. Beat that, brother.

Yes, I'm hopeless. Should have applied years ago, but the thought of it breaks my heart.