Need some help with SSDI paperwork. You all were right, more paperwork did come. I received the Activities of Daily living and the Work History Report.
I'm really struggling with the ADL sheets. How do I word my answers to reflect how RA affects us? The whole sheet is very fustrating because each answer varies everyday.
For example: under housework - list chores you are able to do - well some days I can do alot of things around the house, then the next day I can't do anything because I over did things the day before or there's times during a bad flare were I'll go days without doing laundry or cleaning.
under shopping - If you do any shopping - describe what you shop for and how long it takes - again it all depends. If I spend 1/2 a day at Walmart shopping when I get home I'm wiped out, take a nap and am done for the rest of the day and usuallly spend the next couple of days laying around and napping to try to recover for the exhertion.
under money - has your ability to handle money changed since the illness - well yea, 2 ways. 1. since I'm not working I don't have enough of it to pay the bills. 2. physically picking up change and separating the $ bills to count is hard since bilateral wrist/hands have sereve RA and joint destruction.
Then there's the section on Social Activities, How long can you pay attention - sometimes I can just fine but other times when I'm very fatigued or in pain not so good
have you noticed any unsual behavior of fears - well there's always a concern about what my future will be and depending on others.
I haven't even attempted the Work History Report yet. I'm quite intimidated by that too.
And they only give you a line or 2 to write your answer. Any suggestions would be greatly appreciated!
HI DBMY3, I wanted to let u know that when I filled out my disability papers, my GP told me to refer to each question according to my worst days, like u, I can do things some days but end up paying for it, which as she explained means we can't or (shouldn't) do the things that make us suffer more, therefore answer your questions re your worst days. The nature of Rheumatoid arthritis is fluctuating and any Dr that works for Social Security knows this, generally if we have a good day painwise, then our fatigue levels stink or if you are like me you are suffering from drug-related side effects, so there is NEVER a really good day. Hope this helps, regards Janie, GOOD LUCK. janiefx is exactly right you should fill it out as you feel on your worst days. Do not sugarcoat it, tell it how it really is. don't be stoic with your answers, as people with RA often are.
I am going to see how confusing the paper work really is for disability in a few hours. I am going with my father to his niece's house because she is i the process of applying. She called my father saying she needs help filling out the forms. Her situation is different than those here though.
She never worked a day in her life, because she doesn't want to. She "doesn't like people", but is constantly complaining that everyone else should be taking care of her. She is saying her arthritis is preventing her from working, but from what I have observed of her and her behaivors, I am surprised she has arthritis, let alone one that is disablilitating. Last year she camped out by our pool all summer. Like her own private spa. She complains her wrists are so sore, she can't do any kind of work... yet she single handedly lifted our BBQ out of storage and up three flights of stairs, so she could eat her three meals a day here and not pay for groceries.
She biked all over the city, and went to the gym every day. I have never seen her in any pain at all, ever. Unless, it would be around the time my father would tell her she should get a job when she would come around complaining she doesn't have any food or money to go out. She is only 42.
I am not looking forward to going with my father this aftenoon. I have been asked by him to go because this particular person had accused other members of our family of sexually assaulting her various times when the family was together, which is not true. So, my father wants someone there as a witness in case she gets any ideas about him... he is the most wealthy of his side of the family. She wants money... well, you get the picture.
That all said, I really feel bad that it is so hard for those who really need assistance. People like my cousin make a bad name for those who really are ill and need help. It is going to take everything in me to keep my mouth shut this afternoon... knowing what some of you are going through, and having to listen my cousin complain about pain that she dosen't understand ( I have RA, and I work full time. I could teach her a few things about what it means to be exhausted all the time and sore!)
From the looks of things, the forms are very hard to fill out! I wish you all the best with your application. I really feel bad that some people who don't deserve the help are taking advantage of the sysytem, and those of you who do need it, are given the run around. Life in general is exhausting with RA, you don't need things like this to complicate it even more!
I also would go with your worst conditions.
I just read this articles yesterday. Maybe it would help you.
Frustrating! I can see how they can use just about every answer you might give against you. dbmy. There are days when we can do everything fairly normally. I'm glad your doctor gave you that advice.Dar, I saw that you are located in Canada. I don't know how it is there, but here if you have never worked, you cannot get Social Security Disability. I may be confused, though. Maybe your cousin is filing for some other type of disability.
DBMY3, I just got approved for disability this year and I agree with Jane. The first time I filled out the papers, I did as most RA patients would, and wrote what I TRIED to do or thought I could do. Even with my extensive paperwork from my doctors, I was turned down the first time as they said, according to "their" rules, I was able to do "gainful employment". This means you can somehow make 0.00 per month. On reconsideration filing, they were sympathetic, but said they still thought I was able to work. I got an attorney for the hearing and he knew just how to word things and I was approved before it even went to hearing.
So just be very honest about your worst days, and don't give up if you are denied the first time. Most people are.
My thoughts and prayers are with you.
Nini
Fiona, I guess you are right. I do feel sorry for her at times, but her attitude is so frustrating to me. But, we are going there today and we will do the best that we can for her.
Nini, it is the same here in Canada. I don't know what she is going to put in her forms, but she is filling them out anyway. Even her specialist is saying she can work and it her OA is that bad enough to say she can't...but she is going to try anyway. The only thing we can do is help her, and I don't if we will understand how to fill it out! Neither my father or I have ever filled out one of those forms before. I am interested in what kinds of questions will be on it.
Remember to be honest, they do send out people to watch you personally at random to see if people are cheating on their disability.
So if you say you can't do yard work, never ever do it again.
I know someone who couldn't get anyone to help with their carpet to carry to the road, he hurt his back horribly cuz he had to do it himself, they caught him on tape and he lost his funding.
So be honest and watch what you put. If you say you can't shop, never enter a mall without a type of wheelchair or motorized buggy etc.
Just a note.
Shanbr,
So, if the doctor is telling me that I can no longer do the work I do on the computer, if I use the computer at all, does that mean they can throw out my claim?
It is very specialized work that I do. However, it is basically graphics and writing. So, if I write an email, am I disqualified for disability?
And, I cannot do my shopping from those motorized carts. I am too short. You cannot reach anything on those upper shelves and believe they do not help without a big hassle. That is absolutely ridiculous.
First, we have to be humilated, demoralized, impoverished and then we get spied on. Because one day, I can walk ok. The next, I might have use a cane.
Deanna, I agree that you must be honest. But it is not necessary to lie to get disability. You must prove that you are unable to do gainful employment.
Unfortunately, it is nearly impossible for me to shop by myself. My husband does most of our grocery shopping and most of the cooking. However, I might have been misleading in my previous post. I did not get my RA diagnosis until after I was approved for SSDI. My original disability is chronic pain from OA, degenerative cervical spine, polyradiculapathy, neuropathy, etc. The RA was diagnose in Feb. There are several other spinal problems as well.
I use a walker at home, and occasionally a cane. And a scooter when I go out anywhere. I use a scooter if I go to the market with my husband, and just stand up if I need to reach something. Also, other shoppers are always offering to help. No one is going to take away your disability for that.
There are so many things in my life that I can no longer do that were very important to me that it never occurred to me to worry about anyone watching me to see if I was really sick. My doctors sent in many letters, forms, MRI's X-rays, and every other test report they had that I can't believe someone would think that many doctors would be lying just to try to help me get a little money from Social Security.
I have heard a lot of Workers Comp cases being followed & filmed to make sure they were really injured, but not Social Security. But that doesn't mean it doesn't happen.
Just be honest and you have nothing to worry about.
Best of Luck
Thanks to all for your imput. I'm off to work on it a little more.
I am just so angry at the process. I'm on the verge of trying make a decision about filing or trying to find another way of making a living. I already started the process once, but was forced out of completing it because I had to rescue my daughter. I spent the last few years getting her the care that she needs and still am in the process. But getting her disability was determined in one doctor's visit, two months into the process. That's all it takes if you are seriously mentally ill.
I started the process again, but had to quit because I had to children to feed and needed to stay on medicines so I could stay alive.
I have six years of medical records with every test, MRI, etc. I can barely shop and no one to help me do it.
But that was not the question I was asking. If my employment is directly connected to the computer, which it is, does that mean I can no longer use the computer in any form if I go on disability? It is truly the time and the particular tasks and continuous usage that is causing the problem.
But at my heart, I am a writer and an artist. I cannot separate these from my identity. While I am starting to be convinced that I might not be able to continue employment, and believe me, this is a question my boss has already asked me, I can in small intervals write a little, etc. But if this is seen as my ability to keep working, what am I going to do? Almost all jobs are on the computer, have standing, or lifting involved.
I cannot do repetitive jobs. They cause immediate flares in my hands. I cannot do high stress jobs and already am restricted in the number of hours I can work. I can't stand for over a hour or walk longer than that. I already go over what my doctor has said to work, which is 20 hours a week. But I need 30 to keep my insurance. If I go over 30, then I flare and I am sick the entire weekend or worse, I go in a major flare involving my heart and lungs. And. the cycle repeats itself.
I know I am asking questions that probably no one has the answer to. But I hurt for everyone here that is still trying to work when in truth it is impossible. The other possibility (disability) becomes such a dim prospect that how many of us are injuring our capacity to do anything by continuing to try? That's where I am at. If I keep trying, will my shoulder finally not work at all? Or my hands? Will I not be able to dress or care for myself at all? Is this the point that one must be reduced to before one can collect disability insurance that each of us paid taxes involuntarily for?
If I keep forcing it, will my shoulders finally become frozen? Have I already injured them enough now that I can't possibly do the knee replacements that I have been holding off on and that daily restrict my mobility?
I think of all the things that I cannot do: I can't vacuum, I can't clean an oven, I can't clean the shower, I can't lift anything over 10 lbs, I'm not allowed to do anything over my head, driving is becoming difficult, I am told I cannot continue the work I've been doing for over 25 years, cannot shop for longer than a half hour or I am exhauted for the rest of the day, I cannot go see friends. I cannot travel out of town for fear that the exhausion will hit me and I will not be able to drive back.
I don't want to think of what I can't do. That's not the kind of person I have always been. But just because I have been creative in finding solutions to survive up to this point, it seems wrong to take every ounce of energy to accomplish a day's task and spend the evening in extreme agony for the effort, unable to sleep with pain levels at 10 every day. And, when this becomes your life, you have no quality of life.
I make it now because of pain pills and pain devices, not because anything functions right. And, I am so obviously not the only one. There are so many that are just like me. We are making heroic efforts to survive and no one gives a damn. As long as we still manage to do it, we are employable. Yet, why do we feel that our employment is always at risk as so many of you have indicated.
So, the process is unfair and it makes me incredibly angry. And, the mere thought that I might have to take hold of this process and pray and beg that they approve me so that I can live in poverty the rest of my life turns in my stomach. But I am just one person and so I dont count in the great scheme of things. But what does count that this isn't the way it should be for anyone. It's wrong. Only most people, without disabiltiy, think that this is available to them and their families if they should ever need it. It is quite a shock when they find out different. I am painfully aware of this as I have tried to discuss the implementations with family and friends. They truly don't know it is like this.
How many people have I heard tell me that their entire savings are gone, their houses are in second mortages, and they are still waiting for a determination? Why is it standard procedure to be rejected two times and then maybe accepted the third? That is the standard. Why is it commonly a 3 year wait? Why is there no interim solution for people applying? The system is designed to keep us from having access to it.
This is a system that needs to be overhauled. Our population is getting older. More people are going to have to turn to disability at some point. Something needs to change.
I did mine a little at a time. I would answer a few questions and then take a break. this seemed to make it easier.db, I am glad you brought this up. I haven't hurried getting in the paperwork because I am still unsure what I am going to do, but if I do, this will be really helpful. Thanks and good luck.
Deanna, I agree with you completely! This system is in desperate need of complete overhaul. I have been fortunate in that my livlihood is not dependant upon Social Security Disability. If it was, I can't imagine what I would do.
After reading a SSDI Forum, like this one, I count my blessings. So many there have waited years and their cases are still not settled. In the United States, this just shouldn't be happening to our disabled, who have worked all their lives and paid into the system.
My case went fairly quickly, even having been denied twice. It was almost exactly a year from the time I filed to the time I actually got a favorable decision, after obtaining an attorney, secializing in disability who was familiar with all their forms and how to file them. It might have gone faster had I retained the attorney at the beginning, but I honestly thought I could do it myself.
By the way, Deanna, you have nothing to apologize for. It is extremely frustrating when you hear these horror stories about people on disability. But not being able to perform a full days work at a computer is much different that sitting down at a computer or having a laptop you can take to bed or an easy chair with you for fifteen minutes or so to connect with a support group for your illness. No one will tell you that you cannot do that.
My hands are very bad and I have had a failed surgery on r. thumb, but I can still use my computer for short bits of time most days.
You are also right that most people have no idea that the process is so mind-boggling and takes so long to go through. Many people think it is just sitting there waiting for them to decide the can't work any longer. If I had my choice, and I'm sure all of you as well, I would give anything to be healthy enough to work. You don't make enough from Social Security to support yourself. At least not in California! But sometimes we come to the point where we have not choice but to give up our jobs. I actually stopped working in Apr. 02 and didn't think to file until Nov 04!
Best of luck to everyone.
Nini
I think my depression is as debilitating as my ra. What I have lost because of ra and general lack of energy makes it difficult for me to get anything done. I did the phone interview maybe two weeks ago but I still have not gotten the papers filled out. It has been more difficult because I am the director of a non profit corporation, run out of my home, so they sent me all kinds of extra paperwork
People think because I have education and intelligence that I can just turn to something else. So many people have said I should just write a book and get an advance. But they have no concept of what I must go through in order to write. Somedays, my hands do not work right. I've tried taping and writing long hand. In fact, most of my books are long hand at the moment. Assistive technologies are not an answer to employment. They maybe an answer to keep in communication with a support system. That is in fact what I am using it for now.
My friends at work and my kids actually get it more than anyone else. I'm no longer invited out to shopping lunches, etc. because they know it is too hard on me. I think it depresses everyone to see me keep struggling. They carry things for me, etc. They know I'm not making it.
When I think of taking all of this into a new environment, where people don't know me, I am just overwhelmed at the prospect.
And, Roxy, I so understand your hesitation to pursue this and maybe you won't have to. The paperwork is horrendous. And, every mark you make on those papers, it is like closing the door on your dreams. Roxy, you are a dreamer and doer like I am. I suspect our lifestyles are quite opposites. But we both have souls that like to fly free.
I am very depressed about all this because I know there is a deadline attached to working from home. I know that my boss still expects me to come in no matter what the doc says. And, if I still am not improved at the end of the month, then the doc will probably shut the door on my life as I know it. So, I agree with you Roxy about how depressing it all is. Sometimes, it is just the disease itself and sometimes it is the circumstances that the disese creates.
I know I probably be better about all this tomorrow.
Deanna and Roxy, you are both so right about the depression. In fact, that is also one of my qualifying problems with SSDI. "Depression as a result of Chronic Pain", etc. Don't forget to put that down on your paperwork if your Doc has diagnosed and is treating you for depression along with your illness.
Deanna, the decision to stop working was made by my poor old body! My husband and I owned our own business for 22 yrs. and I had been forcing myself to go on for the last few years because it was our business and no one else had ever run the office, handled funds, done billing, kept track of equip time and employee time and collections. I just couldn't bear to turn it over to anyone. My doctor had tried to get me to slow down for a long time. The only way I kept going at all was with the help of my pain specialist and every type of pain med from motrin to morphine.
Finally, I just had no choice. My pain was so bad every minute of every day, I finally had to give up. My precious husband decided with me that the time was right, we sold all the assets of our corp. and that was that. My health just went downhill from there.
Fortunately, we managed to travel to some of the places we wanted to go while I could, but that ended about 2 years ago. Now we are waiting for an RA med to work so maybe we can travel again, someday.
The hardest thing for me is that I have always been active all the time. Even when I sat down, my hands were crocheting or doing needlework. Now my hands do hardly anything. I can't even tell you what I do all day. And my days used to be so full.
But we can't give up, girls! File for disablility if you must, but you will always have your heart and soul and imagination! They may "shut the door on life as we know it", but we just have to try to find an open window! (I'm trying to give myself a pep talk, too)
I hope I didn't bring you down. That really wasn't my intention.
Keep your faith!
Nini
Nini,
I appreciate your frankness and it is given with such caring. I'm know I am flaring and so I am down. Also, I have had so many big decisions to make this year. Critical paths in my life have changed rapidly.
But I understand about living on pain meds to get through a day. I don't want to up mine and I can't drive on them. I don't want to step up from Vicodin because I don't want it affect me mentally.
I guess what is hard for me is that I don't have a mate to say, "enough is enough." My children want me to go because they can't bear it to be otherwise. They know how hard a fight it has been. Also, they depend on me so much.
But thank you for sharing your own experience. It helps me.
I am just doing a hiatus. Working on disability when my spirit can handle it. I get both nervous and excited about the prospect of returning to work. I should know within the week. The hard part is I am sure that my job is going to ask me if I am certain I can do it. I will have to lie and say yes but I am not, I just pray I can. It is not the money, it is needing some of my identity back and having a reason to get up every morning. Thank God I got into this water exercise. It starts at 9 am. If I didn't have it and have to walk my dogs, I would stay in bed all day. All of that will change when Brett comes back. It is so important to me to make him proud of my effort. That is good, it is motivation.I am pretty sure every day I cannot do it any more and still I do. I don't think that it's a lie to say you can even you are unsure. No one can determine that until you try again. I've had to stop and go many times now. Each time, I thought, it is impossible. But the needs of myself and my children have pulled me through.
I think that inner motivation can pull you through to do the extraordinary every day.
One of the things that those of us who are not at the point of needing to go on disablility can get from all of this is the chance to be prepared for when that time does come. I dont know when it will happen, but I am sure it will eventually. I know for sure now that I will want an attorney from the begining. All of this has made me realize that I need to take my savings and retirement accounts (that are empty) a hell of a lot more seriously. A year ago I would have said "I have another 30+ years of hard work left in me" Now I know that is most likely not going to happen. My goal right now is to get everything that I have financed paid for. At least if I get bad enough that I cant work again I wont be in such bad shape like this last spring.
It is such a maddening prospect. I feel like I am expected to lose everything and then some before getting any help.
I think about RA everyday and how much it affects us, and how little most people really understand about it.
I wish someone like Paris Hilton would get it. Maybe she would quit being a waste of oxygen and use her name to make the population aware of RA and what it really does to your body.
My long term disability company (that I still haven't received approval or denial from) has an incentive to help with SSDI. They offer their attorneys to help with the process - but, if you get approved for SSDI on your own they give you 0.
My plan is that if I ever get approval from my LTD, that monthly check is quite a bit larger than the SSDI amount I'd receive. So, when I have the LTD checks coming in I can wait out the SS process as long as possible before getting an attorney involved.
Bottom line is, the amount I receive each month will never be more than what I receive from my LTD. They will just subtract that the amount I get from SSI from what they pay me. I'm depending on the SSI for the Medicare coverage after 2 years. I'm on my husbands plan now that comes out of his check.
Just trying to prepare for the future. With my luck the Long Term Disability Company will go bankrupt or something down the road and then I'd be royally screwed.
I dont have disability benefits and i recently interviewed for a job that offered benefits. I looked up the company the they were using and there was a whole website for people who had gotten screwed by the disability co. People that had paid into it for 20 years or more and either couldnt get disability or got it for a few months and then got cut off and even asked to pay it back. I was really disappointed. I cant believe that a company can stay in business for so long and take advantage of people.
I hope none of us ever have to go through that.
oh boy, I'm typing in a search now. I did receive STD from them with no problem, lets hope the LTD goes the same way.
Thanks, I'd never thought about doing a search on them.
I was told by ALL my doctors and attorney to fill out the paper work concentrating on what I CAN NOT do rather than what I might be able to do on a good day.
Best of luck to you !!!! Hang in there the paper work will be less eventually. :o)