Has anyone in the US received benefits?

[leahb133]

My understanding is its very difficult for people with lupus to get disability.. since the disease comes in flares and remissions they say that technically we can work part of the year. To be able to qualify I understand you have to be on certain meds and have certain symptoms.. so like me right now I would not qualify since I am in remission.. even though the stress of having a job outside the home can cause me to flare I still would not be able to qualify. Does anyone have any input on this? style_emoticons/<#EMO_DIR#>/cool.gif

[confused1]

Hi Leah,

I recently was approved for SS Disability. It was based on chronic pain and cognitive losses caused by autoimmune disease. I believe that the thing that nudged me over the line was a letter from my gp and another from my therapist. Both knew how badly I want wo work and how much it cost me emotionally to be forced to seek disability payments.

I really believe you should apply and then stick with the process rather than fear what you have heard. Each case is decided independently. Almost all are turned down the first time through. If you miss a deadline, dont panic. Just refile. I did. And don't be afraid to call and ask for help.

Hang in there. It is possible to get what you need but persistence will probably be necessary.

Sunny

[leahb133]

Let me ask you a question though since you reveive benefits.. will me working from home affect that.. i sell mary kay and i am going to have to report that.. let me know if you know anything about that.

THanks for the encouragement also, I appreciate that! style_emoticons/<#EMO_DIR#>/Thanx.gif

[flowergarden]

Leah, you can't be working at all while applying, according to the SSA. Otherwise, you are "able to work" and they will deny you.

[macfamily53]

Dear Leah

From my own expierence it took me 3 tryes before i got it. I also had been told because i had no kidney problems excedra from people i know that i would have hard time getting it but stuck with it. I did get a lawyer fially and i think that did help but my rhuemotoligist also wrote a letter knowing how much stress it was causing me to work and the fatigue was endless. I think between the two that is what helped me to finally get disssability. There is no way you can have any income coming in ar all. That is what my lawyer had told me and other also. That si very unfortuante i know but very ttrue. Well one thing is for sure do not give up keep reapplying if you get denied the first time. That is true almost always people get denied the first time. Good Luck with the dissability.

Tammy

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Leah, I also got disability, and in the state that I live in, they say that you always get turned down the first two times, automatically. Then if you still persist, (and you should ) you will get it on the third try.
I also had a letter that said that I was under soooo much stress from chronic pain, chronic is the most
important word, that with the pain and the stress, there was no way that I could hold down a job. And I
am sorry to say, but, no, you can not earn any mony if you get disability , or you will loose it. You must be
not working for two yrs, I believe. Hope this helps.



Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[raggedyann1]

Leah,

The general rule of thumb for ALL ssdi applicants, not just lupus, is that 33% are approved on initial application. I was one of those fortunate applicants. I think the fact that I kept calling and updating my doctor list, new meds and any testing helped to keep my file current. I also think what pushed me over the edge to approval was the physical function report ( it has a different name) and my rheumy actually asked me the questions as he could have no way of knowing what my daily living is like. Mine was for chronic pain and the additional diagnosis of scleroderma probably helped also.

Your disability date is the first date that you could no longer work. I will also say the small amount of money that many mary kay sales people earn could cause you more problems in the long run with getting ssdi. You have to have so many credits earned in the past 10 years to qualify and that requires a minimum income per quarter each year, I think it is $500 per quarter to count towards credits. If you are only claiming your income annualy i am not sure how it shows up on soc sec computer. Give soc sec a call or go online and request your earnings statement which should give you most of that information.

Let us know how things go.

Take care,
Karen

[dudley]

Hi,

I did get it on the first try. Got it based on lupus, sjorgrens and depression. I think the depression was they final push but not sure. If you work you do not have a shot. make sure you have enough quaters in like Karen said.

Good luck

Elaine

[Sarah53]

I received SS Disability on the first try. It may be because of my age. I am 53. Besides Lupus I have Raynauds and Calcinosis which has caused amputations of two fingers on my left hand. I was also going through deep depression at the time of application.


Good luck, Sarah

[Graciella]

style_emoticons/<#EMO_DIR#>/ok.gif Hello, I to recieve ss, I was truned down the first time, they tell me in my state everyone is the first time, It took me three years before I recieved. I did have to get a lawyer, it helped and he did most of the work. I was also diagnosed with neropathy, chronic fatigue syndrome, lupus, and fibromyalgia, but they don`t consider fibromyalgia a real diagnoses. Get as much paper work as you can from your doctors. It will work it just takes time and patience. good luck. Graciella style_emoticons/<#EMO_DIR#>/biggrin.gif

[susanpaap]

Hi!!
I have not introduced myself I'm Susan and joined last week. I recieve SSI because during my marriage I allowed my husband to claim me as a dependant. I went from an international business to SSI. I have lupus, chronic pancreatitis, and interstital cystitis. Rejected the 1st time and got it the third. YOU CANNOT HAVE ANY INCOME!! Not even Mary Kay. style_emoticons/<#EMO_DIR#>/hissy1.gif They are looking for anything they can not to give you disability. Good luck

[lazylegs]

Hi Leah,
I called months before I applied and they said I would have to be not working at all. Talk to your doctors first. They need to be behind you 100%. If they don't make your situation sound dire you will have a fight. It can be a long process. The paperwork is a bear. While you are still thinking about it you can prepare. They will ask about your daily routine, what changes you have had to make in you daily life to get by, what accomodations your employer has made, your list of doctor's visits, a list of all your symptoms, etc. It is a big decision. It will also be reviewed periodically. That can range from 2 to 7 years. My doctor told me to be sure it was what I wanted because if you improve and want to go back to work it could be harder to get a job since you had gotten disability. Both the rheumy and the neuro pushed my decision over the edge and I managed to get it the first time. My age and the severity of my present flare probably made the difference. At first it was great. Sleep! Later it was an emotional slam. I realized the list of things I thought I would get done around the home I still could not do. My husband had been behind me but acted a little abrupt with me after I got it. It was an adjustment for him to go off to work and seemingly I got to be lazy and stay at home. In our case it was probably escalated since we worked together and now he had to take over all of my duties besides his own. Between work and home I didn't have much time to dwell on my present situation. Now I do. It is more of a challenge not to go into a funk. It is a big decision, but it is what is best for your health that matters.
Good luck with your decision,
Lazylegs

[rwb200]

My wife was on Disability for several years. The first time she applied it went fairly easy for her. She filled out the forms and when asked went to there Doctor who did a eval and granted the disability. At the time she was 85 pounds, had arms that I could wrap my fingers all the way around and could lift less then eight pounds.
Three years later she got notice they wanted to reeval her to insure she still qualified.
She got all of the doctors statements and records and the Doctors said yes she difinitly needs disability.
Ss asked her to go to another doctor eval. When she went he looked at her took pictures of her deformed hand and feet and noted it on his records. He lloked at the lessions and scars on her body that Lupus has caused and noted that.
He asked her to lay on his table and lift her leg, she was not able to do it and he said use your hands to help if you need. With help from her hands she was able to lift them a few inches.
He had het get up from the table and watched as she struggled to do so. He noted this in the records.
He asked her to squatdown and then get back up. She got down but could not get up, he told her to use anything in the room and see if she could pull herself up. She managed by grabbing the table and after a few minutes managed to get up.
He noted all of this in his records. He tested her strength and found she had less the 10 pounds in strength in her arms so she could not lift over ten pounds.
He thanked her and told us we would hear from SS security and asked if she wasn't on it now. She told him she was and he said good cause it atkes awhile to hear from them, they say 30 days but normally take about 90 days.
We left feeling pretty good about the disability.
A week later we got a notice saying she no longer qualified and would be removed from disability.
They stated that there eval showed that she was only slightly deformed in the hands, only suffered from partial loss of strength and loss of miobility. He skin was mainly scars at this time rather than mainly active lessions and she would be able to do sedentary work such as set at a desk and answer a phone.
We spoke to our doctors about this and both said NO SHE MUST NOT WORK. We told them this.
No matter she can answer a phone by there eval so she can work.
We followed our doctors word and she does not work but she no longer gets disability either.
The stress of trying to fight it was getting her lupus raised up so we backed off. No Disability, no fight, but she is doing better.
Have to do what is best at times regardless of what they say.

[leahb133]

Thanks for all the input. I have an appointment on Tuesday with ssi. For my state I guess they have two kinds of ssi and one of them u are allowed to make money, its the type where you can't do what you have done previously etc .. i dont' know my aunt gave me a link to it.. we will see. I have lupus nephritis and have had two biopsies and am about to go on cytoxan so hopefully all these things will work in my favor. I really want the ssi so i can be eligible for medicaid becuase these health insurance costs are killing me and here you can only qualify for medicaid if you are on disability or you are pregnant without health insurance.. or a child of course. so wish me luck, hopefully it goes well.

[dudley]

Hi

I don't know what link that you are talking about but it is wrong. SSDI is not state run it is Federal and all rules apply everywhere.

You are allowed to make a small amount of money on SSDI but when you are applying forget it. Do what you want. Ignore the advice that ever one has given you. If you go through with it good luck but you are just wasting your time.

Elaine

[leahb133]

Wow.. Dudley.. thanks.. for the encouraging words....

My philosophy is if you don't have anything nice to say dont' say it at all.. You could have chosen your words a little nicer style_emoticons/<#EMO_DIR#>/smile.gif Remember we can't see the expression on people's faces over the internet unfortunately so words should be chosen a lot more carefully.
style_emoticons/<#EMO_DIR#>/oops.gif

I just don't like to see when people have negative things to say on a support forum like this, i mean of course lupus is a negative thing in general but i mean just comments that can be avoided like that one. I know i have not been a memebr for as long as half everyone on here but I wanted that to be said style_emoticons/<#EMO_DIR#>/smile.gif No hard feelings and not trying to start a war!! style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/cool.gif

[dudley]

Leah

I am trying to support you. I do want you to have ever advantage in getting SSDI and SSI. I just wanted you to know your chances before your interview on Tuesday. Please think it over. Also, in many states once you have applied for SSDI you can sign up for SSI.

I was given inaccurate info from SSDI saying that I could receive nothing in the way of SSI until approved by SSDI. I learned that I was entitled to certain benefits while awaiting the outcome. These benefits were medicaid, foodstamps and a little bit of money. My SSDI came through the same month that I found out about the true scoop on SSI in my state.

Best of luck on what ever your decision is.

Elaine

[leahb133]

Thank you Elaine, sorry for the misunderstanding style_emoticons/<#EMO_DIR#>/smile.gif

[helpanother]

Leah,

In my experience with SSDI, I understood that you would not be approved if you were making ANY income, no matter how small. There position is - if you can work at all - you don't need SSDI.

In that case, they would help you find employment that fits your limitations.

After you have been approved, there is a "back to work" program, it's not called exactly that, where you can make a certain amount of money each month and not lose any of your disability.

After you make a certain higher amount, they reduce it by a certain percentage and it goes from there.

The idea is to encourage you to go back to work and make it easier for you financially to move from SSDI to working.

However, I think once you are working at all, you set yourself up for expanded/more frequent review.

Good Luck
Vickie

[raggedyann1]

Leah,

Maybe you are referring to a State run program. In california ill people can collect on sdi for up to a year, it is a disability plan that we pay intoo with every paycheck. I am not sure if someone can work while taking it though, except perhaps small part time work but not sure about that.

Karen

[leahb133]

What is the difference between SSDI and SSI? Really i just want to qualify for Medicaid.. that is my main point.. its not the money .. I wish there was a way to do that.. I will have to ask on Tuesday.

Also, if they look at my taxes for my self employment thing, they will see that i make no money becuase it was my first year so it is considered a loss on taxes do you know what i mean? There was no profit on the paperwork.. ? I don't know.. it can't hurt to go on Tuesday and talk to the person and see if and what we can get in motion style_emoticons/<#EMO_DIR#>/smile.gif Thank you for all the responses! Its a lot easier to understand things from the point of view of people who have been in the situation.

[raggedyann1]

Leah,

Besides ssdi usually being more money than ssi there are also extra rules with ssi. With ssi you cant have more than $2000 in savings, a house and a car. any additional assets will disqualify you for ssi only.

Sometimes people get approved for ssi immediately and receive that till they are approved for ssdi. So they usually make you apply for both. SSI is basically a federal welfare program and it is a fixed payment. SSDI is the disability insurance we pay into with each paycheck and the amount of your monthly check is based on what you paid into the system over the years.

Hope this helped.

Karen

[leahb133]

That does help, thanks style_emoticons/<#EMO_DIR#>/smile.gif style_emoticons/<#EMO_DIR#>/Thanx.gif

[rwb200]

I can tell you that when my wife was on SSD the first question she was asked was if she was doing any work ? The second was how long it had been since she had worked ?
She had to be out of work for a minimum of six months with no income before they would even bother to fill out the paperwork.
As for medicaid it did not start when she got SSD it started sometime later. I think it was after two years and then after three she was retested and denied.

It is hard for people with Lupus to not only get disability but to hold it after they get it. The word of your doctors matters little on this. Both of my wifes doctors say that she should never work again. They say that it will be very hazardous for her to work.

SSD says if it is then reapply and we will concider your new application after you run into trouble with it. Who knows it could cause you to qualify again.

How do you prove that you are so disabled that you are not able to answer a phone ? That is basicly the standard that they had for my wife.
If you can set in a chair and answer a phone then you can work.
The answer for us the first time was she could not walk with out assistance, it was not safe for her to drive herself anywhere.
She was so small and frail that she could hardly move, she had been in the hospital and doctors office more then she had been out in the past six months.

I have an aunt who was denied SSD several years ago. She had just come out of the hospital after having her third brain surgery for a tumor that went to deep for them to get all of it. The result was that she was in a wheel chair, had lost all feeling in her body and was paralyzed on one half of her body.
Why was she denied because just before the surgery she was selling Avon Products. They reasoned that despite her problems she may still have people stop over that wanted Avon and she could hand them the pamplets with the side of her body that still worked. She could not write and order form and could not call in an order because no one would be able to understand her over the phone but they could fill it out while they were there.
Sound unbelievable ? Did to all of us as well. Still it did not change it and it took two years of court battles before she got it. Took a Judge who had her brought in and he tried to talk to her and seen what she was able to do on her own before he said give it to her.

[londonteatime]

I don't think it's true that you have to be out of work for six months before you can apply. I left work at the end of December and applied Feb. 6. I wasn't able to do the application and went to the office so they could do it for me.

The woman asked how long I'd been suffering from the symptoms and when I started missing a lot of work because of my diseases. She decided that my date of disability was at the end of September. She didn't say anything about having to be out of work for six months. It took 3 hours to complete the application so if I wasn't eligible, I hope she would have saved us both the whole afternoon!

Julie

[leahb133]

Basically they want to find ANY and every reason not to give you ssd which is what I am seeing. I had my interview and everything, havent' heard anything at all since it has only been about 2 weeks. I know i will be denied the first time and she told me to appeal it takes 12 to 18 months!!!! Geez!

[raggedyann1]

Hi,

You don't have to be out of work 6 months before you apply for SSDI or SSI. You have to have a medical condition that is expected to last at least 12 months. When you are approved you will NOT be paid the first 5 months of your disability and you won't receive medicare till 29 months after your original disabled date.

Leah not all of us are denied the first time thru. If you have organ involvement it is more likely to approved the first go round. Part of it all depends how your doctors fill out the questionaires they are sent. I was approved the first time through and my main disabling factor is my pain. However it did take 9 months for the application to be approved partially because doctors are not always the quickest at filling out their forms.

Take care,
Karen