Life-changing baby steps

[brightlotusmoon]

As several people have told me over the past few days: Sometimes the strongest thing we can do is admit we need help.
I have filed for Social Security Disability Insurance.
At the end of the month, I will meet with a lawyer to discuss further options. I've spoken to my doctors and specialists. I got a phone call from someone working at the SSDI department who will process my application. I won't hear from them for six months or so, give or take.
I am officially freaked out and have no idea how to calm my panicked brain. This is the biggest thing I have ever done, surpassing all the other big things, like pack up my life and move from New York to Maryland to be with my lover.
Everyone tells me I'm doing the right thing, the best thing. All I can think of is potential rejection. All I can think of is possibly screwing up, which is why I'm going to talk to a lawyer. It's not that I'm not disabled (I'm so disabled that my state government gave me a free pass to ride the metro system). It's whether or not I'm disabled enough to receive government aid.
I'm shaking.
Breathe, Jo. Breathe. Oh gods, why am I panicking over something like this?
If anyone has any advice, I'll hear it.

Comments

[funnel101.livejournal.com]

Yes, you are disabled enough to receive government aid.

Don't be discouraged if it takes the government some time to realize that, though.

Advice: take notes on every verbal communication you have with Social Security.

[brightlotusmoon.livejournal.com]

Good idea. I hadn't thought about taking notes on verbal communication!

I think my biggest problem might be the fact that I haven't seen a ton of specialists, mainly just my general physician (PCP) and my neurologist. I saw a rheumatologist once, who just blithely echoed the PCP's diagnosis of fibromyalgia, and a chiropractor who didn't do all the much - but I'm sure I can add that in, somewhere. The lawyer should know what to do.

[funnel101.livejournal.com]

It took me a few months to figure out I needed to take notes, because I was getting conflicting information about what I could qualify for. (Originally I was trying to apply for adult-child disability, which I would have qualified for because of my age, but not because of my marital status.)

Anyways, good luck, and try not to get discouraged.

[brightlotusmoon.livejournal.com]

Thanks! I'll do my best. I think the odds might be in my favor mostly because I'm already in the DC Metro area's MetroAccess program - my state government lists me as disabled!

My 2 cents

[xanateria.livejournal.com]

I feel for you hon, I really do. I have been there, quite literally. First, I have to say, yes, do breathe. Every time the panic wells, remind yourself that getting funding isn't failing, it's just succeeding in a different way. That being said, I know how hard it is trying to reconcile being considered disabled enough to get funding, when that's not how you see yourself. And on top of that, you are hoping against hope that you won't screw it up and you will get it, even though you aren't sure how you feel about it. It's a very conflicted time, because it's hard not to see it as something that will define you, especially given the sometimes negative stigmas attached to funding.

Before I get to some advice about the process, I just want to repeat, no matter how much it makes you panic, it is the right thing. But just because it is the right thing does NOT mean it becomes the be all and end all of who you are and what you have done. You've still led an amazing life and done amazing things and this cannot take away from that unless you let it. The fact that you get funding opens more doors for you, financially, which is a good thing. But facing a process that means an arbitrary label about your disability is not an easy thing to accept, especially given that you are like me, and have spent your life defying preconceptions and labels.

Anyways, enough about that, I don't want to ramble too much, though I am more than willing to discuss it with you at length, if you want/need.

As to the process though, I do have some things I think are important. First, understand that applying is a long, drawn out process no matter where you do it. Not only should you keep notes on any verbal communication, but keep a log for the day you mail/fax things, and keep photocopies of EVERYTHING you fill out. That way if they tell you they don't have it at any point and have to resend it to you, you can save steps.

Most importantly though, remember that it is possible that you will need to apply more than once, and not necessarily because you screw it up. I had to apply for funding a total of three times. My mother, who ended up getting the same funding as me had to apply six times before she got what she was entitled to. I hope that doesn't happen to you, but if it does, don't give up if they do say no right off.

Okay...I have more I could say...but again, I don't want to ramble...

(((hugs))) Good for you. You can do this, just like you have managed everything else. The panic fades, I promise. And if you need an ear, you know where to find me.

Re: My 2 cents

[brightlotusmoon.livejournal.com]

Thank you, Josie. Thank you. This helps. And if you do have more, please go on! Ramble all you want! This will be useful to me.

Re: My 2 cents

[brightlotusmoon.livejournal.com]

Oh, I meant to ask! Why did they make you apply so many times? You have cerebral palsy!

The whys and wherefores

[xanateria.livejournal.com]

I can't say for sure as to why I had to apply as many times as I did. When I had a competent case worker, she explained that the decisions are often less about diagnosis and more about how well you can provide the information to them in the format that will allow them to see you as deserving.

I was also told at one point that even though I had CP, I wasn't disabled enough, whatever that means. For me though, it really did come down to learning how to present my info on the forms in the ways that frame it the way the bureaucrats want to see. It seems sad that presentation counts for more than medical fact, but at least in my case, and on my mom's and a few others I know, it is very definitely true.

That's actually where I was going when I said I had more to say. Your best resource would be someone who has successfully filled out the forms for your area, because you as an independent person will likely have a hard time framing it in the terms they want because you see it as too negative to be accurate. Honestly though, I think this would be something best to have a chat or phone conversation about, if you are up for it.

Re: The whys and wherefores

[brightlotusmoon.livejournal.com]

Ah, interesting! I'll talk to the lawyer about this when I see him in two weeks. The initial application I had to fill out was really simple, and I know I can add things later with the lawyer's help. I don't know if the system in the US is the same as the system in Canada, though... a friend of mine who lives in my state was approved on her first try with help from an attorney.

[lovefromgirl.livejournal.com]

No advice. Just love and peace. I will breathe too, and hope that things work out for the best for you. You do deserve this -- you have been giving as much as you can for so long now. It's time for the state to help you.

(Okay, it's not advice, but: Good call on the lawyer. That is usually a good move, I have heard.)

[brightlotusmoon.livejournal.com]

Thank you. I already feel loved and peaceful. :)