Migraine

Hi everyone,

I am SOOO depressed! I have been on permanent disability now for...is it 6 years??? 6 years, almost 7. Turns out, I was just on the SSDI website after linking up off the MAGNUM site. I NEVER KNEW THE PERMANENT MIGRAINE DISABILITY RATING WENT UP FROM 50% TO 100% IN 2005. Will they upgrade my SSDI income? Will it be retro-active? Shouldn't I have been notified by...some agency or something?

I have kept my PT license active & still have my Master's degree, but I feel like a personal failure because I cannot even get out of the house for very long without being at risk for an even greater migraine than the one I've already been fighting! So, I've basically shut myself up in the house(I rent, of course)...and I don't fair very well outside. But it's deceiving, because on a good day, which seems rare, people say they would never think I had anything wrong with me!

It's like waiting for something to happen. I am absolutely desperate financially. Not homeless yet, but cannot pay the gas & electric at all (my bill is near $5K), my car still needs repairs, and I'm becoming gravely concerned for my personal well-being .

I can't talk with my family-they are experiencing their own crisis with my brother in the hospital and my aunt's cancer has returned. They feel utterly helpless anyhow, when it comes to me & my migraines. And financially, they absolutely cannot help. I've shut myself up in my house and I can't get out!

Like I'm watching a train wreck on super slow motion strapped to my couch. What's weird, is that I know right now, a whole world of people are feeling a portion of my same crisis, with even some of the physical complaints-but their's gets to go away and mine won't. At least not until there is more research...and many, many more years of this.

<OK, back to my questions. What should I do given the 2005 change &
<How does one possibly survive on just disability income?
<The rest of the nation is having to cut back, but how do you cut back when you're living on the edge already?

I need some healthy feedback here...anyone?

CJ

CJ,

I'm sorry things have been so tough for you. My DH has been on SSDI, and I know that's not enough money to live on, for sure.

Here's the basic Social Security Disability website link:

http://www.ssa.gov/disability/

There is also SSI, supplemental income from social security if your income falls below a certain level.

Did you have a lawyer help you when you initially filed your claim? If you did, you'll probably want to contact them again to see how you would qualify for full benefits. I'm not sure what state you live in, but google "social security lawyers" and see what you get. The initial consult is free, and they can't charge you any fees unless they help you get money, then it comes out of the settlement.

With your utilities, call them and ask about low-income aid programs. I know we have them here, and you certainly should qualify. Also, contact your church. They can usually point you in the right direction for different aid programs, maybe even help you apply. If you don't have a church, contact one in your neighborhood. They are usually quite willing to help. You probably could try the United Way or something as well.

Have you filed for food stamps or cash assistance with your state? Many of those applications can be at least started online before you have to go to the office.

Your lawyer may also be able to help with getting you the contact info for different aid programs.

Well, I hope you find at least some of this info helpful. I know how you feel right now. I was off on short term disability for my migraines and got laid off from my job. I'm very seriously considering filing for SSDI because I still have daily migraines. I had to be an advocate for my DH when we went through the process for him, so I know I'm hiring a lawyer from the get-go.

Good luck, take care of yourself and keep us posted on how things are going.

Thanks, Melissa.

I appreciate the feedback and info, and a calm voice in this ocean of uncertainty!

I do already qualify for the electricity aid, which I think is the only reason they haven't shut it off yet!(Thank You GOD)

As for food stamps, I was told that my income from disability, and the current child support I get, puts me over the financial qualifying limit. But my concern is that when the child support stops, what then? I'll qualify for food stamps, but won't be able to pay the rent...and on and on... I know it's worry for the future, but it's coming fast!

I have already contacted my local church too, which I attend. (They said I am not a "member", however, and thus they couldn't do much for me). Maybe I should try again and get some advice? It's a really big church.

Thanks again-it makes sense to contact my attorney first and foremost. That's what I'll do tomorrow!

CJ

Hi CJ, it's great to see you posting again, welcome back!

We added a new Start Here Folder since the last time you posted. Be sure and take a look at it for information and guidelines about the forum when you get a chance.

I'm so sorry to hear you're having financial problems. I can totally relate with you. I went on SSDI this past year and while it is a great help, it doesn't replace my previous salary from working.

Have you seen this prescription assistance site yet?:

pparx.org

Did you get a chance to talk to your lawyer yet? Let us know how it goes, k? In the meantime, I'll keep sending positive vibes your way!

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CJ, I thought I'd point you toward a chronic illness advocate who may also have some ideas for you. She also has some good information on her site about social security, among other things.

Advocacy for Patients with Chronic Illness

Best of luck to you and let us know how else we can help, ok?

Hi everyone,

Thanks for your support-I so very much appreciate it!

I did phone my attorney, and he said he had no idea what I was talking about?!? I tried to explain about the website I found on the MAGNUM site, Article 8100 which affects the impairment rating on disability from 50% to 100%. He said I already had a 100% disability rating.

Anyhow, I want to understand more and be involved more in this issue of migraines and disability.

There is so much I don't understand-so much I'm trying to learn about this legal system.

CJ

CJ,

You're very welcome, that's what we're here for, to help and give each other support. Have you seen this article yet?

• Disability Benefits – SSI and SSDI

Take care!