SSDI denial

[danelle]

I just got my denial, I have cried til I can barely see. They said that they realize that I am unable to do any of my past jobs but because of my education (RN), age 37 that I should be able to do something. I say $$$$$&^%*^(#*$&@(#*$&(@#&*$ to that!! I can't even walk through the house half the time!!!!!!! I am read y to give up.

My family will now lose all we have and it's all my fault. this *****. Do they (SSDI) want me to get a job and just collapse or what, because it would happen-on the first day

I can't wait the extra year or two to get SSDI, there is no way. My marriage, family, and self have suffered enough. This will put the nail in the coffin.

I'm at a loss for words right now, maybe it wasn't such a good time to post.

God help me and my family......Please send your prayers our way.

Thanks for listening

[goldicedance]

Oh, Danelle, my heart and prayers go out to you. My recommendation--APPEAL. At what level were you denied? Perhaps other POTS folks who qualified for disability can give you pointers.

Don't give up! Your life is too important! You mean too much to your family!

[Guest tearose]

Dear danelle, oh I am so sorry to hear this! Please see if you can take this to the appeal level as goldicedance suggests. You endured so much to get to this point, can you push one more time? I am not able to give you any other information since I am still waiting for my hearing decision. The "system" makes it so tough to get the financial support we so desperately need. Do not let this zap all your strength! I will send many prayers out to you and your family. Don't concern yourself with how you write or about venting your anger here. This IS the place to vent. I am so sorry, everything seems like such a struggle...I do understand. I wish I had the right answer, the right words...please take care, tearose

[DancingLight]

danelle!

AAAAAAAAAAAAAARRRRRRRRRRRRRGGGGGGGGGG!!!!

that is so disheartening.

i have to go to eat dinner. but wanted to say really quick...HUGS sent your way!

i don't have time to get philosphical right now!!! (maybe that is lucky for you huh?)

but....YOU MUST APPEAL and GET A LAWYER! what level are you at??? it may not take a whole nother year or two to get approved....

please HOLD ON TIGHT k?

and i will try to write more later...

emily

[ethansmom]

Oh I am soo sorry sweetie!!! I feel for you, I really do.

I agree...APPEAL!!! APPEAL until you can't APPEAL anymore...there is hope, and please don't lose it

Things have a way of working out...and so many others on this board have succeeded when they never thought it was possible. You will get some good advice!! Hang in there!!

[funnyfrog]

Danelle - Sorry to hear about your denial, one word of advice. Call a lawyer first thing tomorrow and have them appeal your case immediately!!!!!!!! It won't cost you anything. Maybe you can tell us what state you are in so someone on the forum can suggest a good disability lawyer that is in your area to appeal your case. It is necessary to get a lawyer if you want a real fighting chance. Hope your luck turns around real soon I'd be angry too, but since you probably used all your energy crying today already, just think, things can only get better from here on out. I'll say a prayer for you.

[calypso]

Do the SSDI people have any ideas on what kind of work they think you would be able to handle? Tell them while they're at it, they can find you a job that allows you to lie flat while you do it.

That really *****, Danelle. I have two friends who work for my state office that handles disability and they say it hurts them so much, believe it or not, when they have to reject people. They say sometimes it is out of their hands. But I do know the appeals process has worked for others, so definitely do it.

What about medical transcription, even part time? That may help you pay a few bills and you can often do it on your own time from home. It may help in the meantime until you get the SSDI.

So sorry,

Amy

[Brwneyedchica]

Wow, i'm so sorry this has been so rough. How frustrating I can only reiterate what everyone else has said above, don't give up, get a lawyer and appeal. From what i've read most people get denied the first time or even few times. I'll keep you in my thoughts and prayers.

[morgan617]

oh danelle, i am soo sorry. i know how hard it is and the guilt is awful. we had to move and sell our car and all kinds of stuff, but don't give up..it's what they expect and want you to do. get a lawyer and appeal! don't let those meanies get the best of you and know many prayers and hugs are going out to you! morgan

[DancingLight]

danelle,

your post makes me so sad....you are carrying a tremendous amount of guilt over this. is your family making you feel bad about being sick? or are you beating yourself up unnecessarily. (i don't mean that flippantly at all!) many of us blame ourselves for things that aren't our fault. you are not to blame for this illness or for getting sick. i hope deep down you know that and are just in a bad spot right now...i feel a tremendous amount of guilt too, so i am not saying i have this all down! but, i do know we pile it on ourselves more than we probably need too. esp. at times like this when you feel so disappointed.

i do hope you can hang on and hopefully be able to manage financially until you get through the appeals. you WILL win, it just will take more fighting. give yourself a little time to grieve and then see if you are ready to call a laywer...

until then...please hang in there and keep us posted. also, maybe someone will know of a disability lawyer in your state, as mentioned earlier.

emily

[Merrill]

Danelle, your post made me sad too... I want to echo what Emily just said ... and tell you that I too hope that you're able to find your way through the appeals process ... it's difficult, but the great thing is that there IS an appeals process! I hope you will find the right lawyer who will fight fight fight for you. Don't give up!!!

Merrill

[Herdswoman]

1. You did good by posting here. Quit crying, take a deep breath.

Time to build a support network and start thinking like a warrior....which is what you are going to be in order to slay the red-tape monster.

2. Realize that dang near everyone gets denied the first time, especially if we are young. (I had a cousin my age, born profoundly retarded: total care, diapers, never walked or fed herself. From time to time my aunt and uncle had to take her in to various offices to see if she still met the rules for benefits, for crying out loud. What a ^%$#@ dog and pony show they put them through!!!!! Vultures!!!!!!!) That's the mentality we are all dealing with here, so get ready!

3. Hire a lawyer. They get paid when they win (take percentage of what you get from the point at which you were disabled to the point at which you won your case.)

4. APPEAL, by all means. Realize that this is a process, not an endpoint and will probably take at least a year.

5. Check with your HR department where you were an RN. Most of us are offered disability insurance. Are there some benefits you don't know about? Can you sign up for disability during open enrollment - even if you are on leave right now?

6. Tap into your private disability policy, if you have one or can get one. Have any surgery you may have been putting off (cholecystectomy, anyone?) Pencil pushers understand that and you will get paid for a few weeks, anyway.

7. Batten down the hatches and get ready for a long, stormy course. Discuss this with your husband and figure out a financial strategy so that your family will come through this relatively unscathed. Could mean very tough choices: sell your house, buy one with a smaller mortgage, sell any cars that are payments and drive something that is within your means. I'd take ten year old Honda if it meant getting out from under a car payment at this point. Be proactive: SELL BEFORE THE BANK TAKES IT...BEFORE YOU ARE FORCED TO USE CREDIT CARDS....BEFORE YOU GET INTO A CREDIT TRAP.....SELL EARLY and you will be in the best long term position.

8- An unexpected resource just came along for me: my disability policy (UNUM) has a legal team on retainer that will file appeals for me and COST ME NOTHING, not even a percentage. My claims rep likened them to the US Marshals: they always get their man.

9- Tap into your MD resources. Get letters and records. As an RN, you know how to play the documentation game.......and that's all this is. Send your MD's letters specifically asking them to advocate on your behalf.

REMEMBER

You are NOT HELPLESS.

You are NOT AT THE MERCY OF SSDI.

You are SMART, RESOURCEFUL AND YOU WILL WIN.

You are a WARRIOR WHEN IT COMES TO PROTECTING YOUR FAMILY.

Our strategy for surviving the filing and appeal process:

We sold our big house, downsized considerably. We focused on our daughter so she wouldn't feel the sting of moving as much......simple things, like letting her have lime green walls in her bedroom. Totally funky, didn't cost squat. Shopped the rich section of town for garage sales and got her a new wardrobe for starting middle school.

I just sold a whole set of my collectibles (cranberry glass).

My racecar is for sale, as is the drivetrain.

I have a list of things I'd sell next, if I need to: my horse, my Lenox china, other investment quality pieces of antique glass- heirloom or not, I do what it takes to protect my family.

Early on, I sold a chunk of my retirement to pay off a few things when this all started- about $5K worth. Paid off my pickup truck and my horse (and he's my sanity/therapy/exercise right now.)

None of this was easy, but compared to living on credit cards, running up debt, or losing our house and filing bankruptcy, it's nothing. Until something permanent goes through we are strictly CASH AND CARRY in our house. NO EXCEPTIONS.

None of this is your fault. Your husband or children could have gotten sick just as easy. Would you blame them? Of course not. So don't blame yourself. By all means, don't let anyone else blame you either.

This is not easy, but people with POTS can do hard things.

Edited October 28, 2004 by MightyMouse

[blackwolf]

Oh boy, can I relate.

As said befor, appeal!

I took 2 denials and a court date to get it. And I still had to argue with the judge.

Sending you calming vibes and prayers for what is yet to come.

Blackwolf

[corina]

Danelle,

don't have anything extra to say, everything is said before. I cried a lot of tears when I was disaproved the first time. But after the tears it made me feel strong: like Herdswoman said People with POTS can do hard things.

Go for it, wish you all the best,

Corina

[goldicedance]

Corina,

Forgive me if I got you confused with someone else...Don't you live in the Netherlands? If so, I thought that your country has a disability program that is very liberal and allows many more people than other countries and even has a partial disability program. Most people get full benefits.

Is that the case?

Goldie

[Dawg Tired]

All I can do is echo the previous posts - appeal, appeal, appeal. I am now waiting for a decision from the Administrative Law judge. I had my hearing August 31. My husband had his hearing March 19 and didn't get a decision until August 6. He still has not recieved any money but at least we know something is coming.

You MUST keep going on this - otherwise you will end up having to start the process all over again at a later time.

[purplefocus]

Danelle,

I am so sorry you are having to go thru this. You have been giving wonderful advice on here. Please take it to heart. We are our worse enemy at beating ourselves up for this illness. We didn't ask for it nor caused it but we are having to suffer from every corner of it. Mentally, physically, emotionally, finacially and on and on. Like someone else said if it was your child sick, would you blame them? Appeal, appeal, appeal. Don't give up. Sending hugs and positive wishes to you.

Paige

[purplefocus]

Danelle,

I went back and read an old post of yours where you had applied for disability. So it looks like this was your first denial. Whatever lawyer that you talked to that did not give you much hope.......PLEASE......don't go back to that one. You need someone that is positive and on your side 100%. They are out there, just call around. You also had in your post that things were already finacially difficult. I can relate to that all to well. As a nurse, my income was the largest, so when I had to quit, it put an impossible burden on us. We have had to have help from my husbands mother just recently. Of course I hated this but if it was my child I wouldn't have thought twice about it. Something else, I have learned to live very frugal. We never eat out now and I can buy groceries including laundry detergent, paper goods, etc for a family of 4 for fourty dollars a week. This includes one every growing 13 year old boy. I live in Alabama, I know this could be different in other states. I go thru all the local sales paper, coupons and make my menu for the week around it. I have talked to my mortgage company and was able to get a deferment for a couple of months. It did tack on extra at the end but it helped for now. Like the others I have sold stuff. I thought by now we would be homeless but there has been away every month. My husband has taken on all the overtime he can. Look into every possible resource you can. If you are involved in a church, they might be able to help for awhile. Just know this is temporary and you will get what's coming to you.

Paige

[corina]

Goldie,

no you're right, I'm from the netherlands and yes they WERE very tolerant with disability. Since the last two years things are changing and I know that's for the best because (and I feel very embarrased to tell you) there were people having disability who absolutely didn't deserve it. I know this sounds strange because I do have disability, but there are people who want to do a study and a job together and when it turns out they can't do that they quit there job and still get paid for it and go on with their study. There also are women who get a job and "become ill" they get disability and can stay home with the children. And you know what? They even admit it on television. And there are many more examples. There were people having disability and still they had a (different) job I know a few of them personally. I'm very sorry I react so strongly but this is what really makes me angry because it's so unfair. So nowadays things are MUCH more difficult. The doc who had to see me for making a decision about me having disability told me I had nothing (didn't your cardio tell you? she asked). My cardio said she wasn't blessed with too much knowledge and wrote her a letter how things really are (so did my familydoc and my PT, I really love them for doing that for me). So I think you can understand why I'm feeling so sorry for everyone around here who is disapproved, I finally won ( that's more than a year ago now) and they still owe (spelling?) me money. They are going to stop the partial programme as well btw, only some who can't work for 100% may keep there disability. Everybody will get a new research in how they are doing now. So I'm not even sure I can keep this disability. So Danelle, find everyone you can find to help you out, go for it.

Corina

[danelle]

Thanks to everyone for their kind words. Needless to say, becasue I got so upset yesterday I had a horrible night and it is still continuing today. (They tachy, irregular beats, fatigue, pains etc)

I live in NC. Don't know if anyone else has had any experience here with disability or not.

On my list of disabilities were POTS, fibromyagia, CFS, anxiety/panic disorder, memory loss, depression, MVP, and hypoglycemia.

THis is my first denial.

I spoke with my worker today and he told me that I did better(with my case-as faar as replies, info gathering, info giving) than 90% of people who apply. He seems to be a very nice man. He told me not to get discouraged and give up. I agree but it is hard not to when you are virtually running out of money. We have nothing of value left to sell-honestly. WE have no equity in our doublewide mobile home, etc.

I woke up angry and ready to fight this morning-between the symptoms. I have called many attorneys offices here and they say the wait for a hearing(if I get to that level) is 18mo-2yrs. I freaked. They sayhaving a supportive Dr will help. Well I haven't this far but finally went back to my old GP and she is willing to help me.

I am waiting for calls back from the Dr, the attorney, Congressman Taylor's office, my psychologist. I have started working on the paperwork for reconsideration. I have only seen my GP once and the therapist once since my last attempt. I haven't seen anyone else, so that may hurt me I don't know. BUt what can anyone do??? We have tried every med int he world.

ANywy, anyone have any other suggestions on what else I can send them with my paperwork to hlep my case? I am going to strive to get it to them on Monday. I just wnat to know what all would be beneficial. they already have all my medical records.

Again, thanks to you all. I will FIGHT this thing to the end. I am not going to give up. That is not my style.

Will Dr's who aren't supportive make a big difference on their decision? I would like for each Dr to walk in our POTSY little shoes for a week, the whole tune would change-and the fact that I have worked, am young, and have an education hurting my chances doesn't say much for our government.

If I stayed home and sat on my rump, didn't attempt to help myself, etc I bet I would already have it!

Thanks to ALL of you, I love you guys

[yogini]

Danelle,

I just wanted to say that I was really sorry to read your post. But you have a great attitude in light of all that's happened. Since most people are denied on the first try, it's a really good sign that your case worker said you did better than 90% of the applicants. Though it may take some time, I am sure your perseverence will pay off. Hang in there and best of luck!

-Rita

[DancingLight]

danelle...

did you find any lawyers in your phone calls who would take on your case?

i don't know other people's experiences...but my lawyer would NOT let me fillout any of the paperwork myself...he did it all for me b/c he said there was a way to do it and you can actually hurt your case by sticking in extra stuff....so, i just wanted to point that out since you asked about putting in extra info. etc....and did we have any tips.

so, i don't know what goes in and what doesn't ...somehow i was able to let go and let this lawyer take over...what a relief it was. so, i think right now would be the best time to get the lawyer on the case. i think it may also help you get a hearing sooner?

still, it is infuriating that you should have to become practically penniless before getting your disability. oh, the other thing that i was able to do...i went to the COUNTY ASSISTANCE OFFICE...which is separate from the federal/state folks doing SSDI...and was able to get medical assistance and food stamps WHILE my claim was being appealed. HUGE lifesaver to have the medical covered. and hey, those food stamps can make a difference too. they also have energy assitance programs, phone assistance programs, etc. so maybe that would hlep you get through? i don't know? i am just pulling any ideas out of my brain possible wanting so badly to help you. i also live in PA and unfortunately don't know anything about NC!

as you can tell your situation hit on one of my hot buttons! people should not have to become impoverished b/c of disability! disability is a huge reason for people going into poverty in this country...and that should not be so. we must take care of all of our citizens! sorry. i am done now. but i hate to hear what you are going through. it makes me mad, sad, etc. etc.....

i really flared up my symptoms after i got my denials too! oops!

well, danelle, keep hanging on. you are really showing a lot of courage getting up and making all of those phone calls today. I do know that you will win...it just shouldn't be a system that makes people wait so long. if you haven't already though, PLEASE check in with your county/local assistance office and see what services might be available. even verizon, our local carrier, has a special phone program so taht low-income people can have a phone line....maybe these little things will help you to stay in your home until you win your case? i'm sorry i can't offer more...oh, they should also have a disablity advocate person working there for you to talk to....they might know a lawyer for you. you can ask them questions without hurting your case...

off to nap!

emily

[Jersey Girl]

You must appeal. I have been denied twice now and just found a lawyer in August to handle my next appeal to the administrative law judge. The attorney told me it most likely would be 10 months from this past August. I don't think social security has any idea how this condition impacts one's life. Take care. Martha

[Ernie]

Hi Danelle,

I don't have more advice than what has been said but it is really important that you appeal. The government rejects people the first time because some will back out. You deserve the money because you are unable to work. I don't remember reading about someone not being finally accepted (with dysautonomia). I know it takes perseverance and help but is is doable. You have to continue for yourself and your family.

Ernie

[Herdswoman]

Good for you, Danelle! Way to go on the phone calls!

Like others, I re-read your first post. Finding a good doc who can help you is important. Get a referral to Dr. Grubb. I just got my appointment and it is booked for JUNE, 2005. I s'pose he's booked in to July by now......any rate, I was surprised to learn that my cardiologist had to actually make the appointment. They don't take new patients who just call.

At least I've got it on the books.....and as part of my appeal. I think it looks good for an appeal. They will know I take it seriously enough to wait nine months to get in to see the pre-eminent specialist in the world.

Thanks also to Dancing Light and the tip about county assistance. I'll probably be checking that out in November.