What do you do when you think you can't work anymore...

What do you do when you think you can't work anymore?

in our experience, the doctors had been telling my husband he probably shouldn't work anymore and that they would help with disability. However, he worked up until he couldn't anymore and then filed online that day. We got the initial denial letter and then hired an attorney. I'm not sure how long it takes in NY for approval.... We ended up filing a letter begging for an expedited hearing, and were fortunate enough to get one. But the whole process still took nearly 2 years for him. Do you have longterm disability benefits available thru your employer or anything? My husband was 40 when he had to stop working....

Im 44 and last night tipped me. Im just burning up. Disability is a complete unknown to me...don't even know anyone on it.

You can begin the claim online, and then they send you all kinds of forms to fill out. Doctors need to fill them out, They ask for third party documentation. I got letters for him from co-workers/employer, family friends that could describe his health decline, and I wrote one as well. If you look up Social security online, you can even search by state to see how long the average process is. www.ssa.gov

I wish you the best of luck.... They brought a third party "occupational expert" in for his actual trial. They know nothing about his diagnosis, but found 3 jobs they felt he could still perform. Then the judge has up to 90 days to make a determination. But the wait for the trial can take forever. If you decide to file, it may be worth looking into having an attorney help. Here in Michigan, and I assume elsewhere, they get a percentage of your award.... It's the waiting that can hurt financially if you don't have a huge savings.... but when you just can't work, you simply can't work.

We are going to start to read up on this

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So sorry if you think that you might have to give up work. I had to give up my job which I loved in 2012. I have to say it was devastating for me at the time. However, I've managed to carve myself out a new life, not one of planned but a good one. From my experience the first thing would be to look at your financial situation and begin to explore the possibility of claiming sickness benefits etc. Then begin to find things that make you happy and can still do. Not easy I know, it has taken me a while to get where I am now but I'm sure you will get through this difficult time. Also not having to worry about work means that you can really begin to look after your self and not have the worries of work. ☺

Love your optimism. The stigma of the husband and dad is supposed to provide i cant shake. I wish I could truly sit down and have dinner with somebody from this board because until I join this I've never heard of anybody having the same problems as me. Somebody who relates is priceless. My wife certainly listens as well as my MD's but none have any idea what this is like.

My heart goes out to you as i know the pain and turmoil you must be going through. Although I'm a woman and therefore not seen as the main bread winner i was, for the first time in my life, earning enough money to support myself and not have to rely on…#

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Do you work on your feet and do you have experience in any other fields besides the one you're in? I couldn't even get a doctor to write a letter approving accommodations in my workplace. It's frustrating. But if you can work an office job that may work better for you. I burn 24/7 but I can manage if I can sit and have a fan. I pull my feet out of my shoes under my desk. Still not easy but a little easier.

I'm a nurse in a correctional facility overnights. I have the ability to sit at times and kick my crocs off. When i do I'm on an ice pack. Being summer now and the increase in temps just too many flare ups. My mind is honestly given up. The thought of not working terrifies me and I'm sure i will plunge into a depression but that has to be a good tradeoff to cut down on some % of daily pain.

You'll find other ways to use your time. What you'd find is that being able to have a little more control would allow you to still do things. You may even want to look into part time.

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Been there if 2007 took medical leave. I was close to 30 years and age 55 to qualify for my pension. I had alot of sick leave, and had a disability Insurance policy enforce. I lived on 50% income until I ultimately retired the week of my 55th birthday. Bittersweet. I Would hope you can have some options, to steer towards disabliity or SSDI or retrain for another occupation. So sorry, hard place to be, mind is willing and able but the body, makes you imprisioned.

steve3 I too was a RN with home visit for special needs. Now I am the one with special needs, ironic. Maybe you could eventually get "remote casemanager or advise RN, with technology maybe in the future, you could get work" or thru the correc…#

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I had to quit work 4 years ago. Been housebound 2 years. No disability. Didn't try. I don't have the energy to fight for it. Thank God for my dear sweet husband.

I'm sorry you are facing this. It is terrifying and that makes the em worse too. Anxiety use to send me into pain instantly.

I've always had a strong mind all my life. Stuff could roll right off of my but this has consumed my thoughts daily.

steve3 I understand completely. I wish I had the words to give you peace but we each have to find that peace in the midst of a storm that seems never ending. Acceptance was the key for me but then I had a husband that I knew would take care of me. I'm not sure what your situation is but I'm praying for you.

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SSDI took 3 years and a lot of tears. I miss my old life everyday but the new one is starting to grow on me

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Depends on your medical situation with this disease and your doctors. Our daughter is in a wheelchair from em. She got disability.

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I was self employed but had to give it up in 2014, I was devastated. Still coming to terms with things 'I want to do' and things 'I can do'

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It took me 3 years, 2 denials, and a court hearing to get SSDI. I have multiple chronic illnesses and have been in a wheelchair for 10 years. I had a "patient advocate" assisting me from my former employer, but the considerable amount of paperwork and tracking down medical records, etc was all done by me. All that, and my monthly benefit is less than minimum wage.

How do they determine what your benefit is?

They base it on your "work history," basically how much you have put into the system through Social Security tax. Since I had low-paying jobs (secretarial and retail) and a 4-year gap when I stayed home raising our son, my benefit came out to be pretty low. Luckily, we have an extra payment due to our daughter still being under 18 and a dependent.

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The only job I found right now that I'm able to do is at a lil corner store. My bosses are awesome and let me wear what I need to on my feet, I only work 3 nights a week and they are really understanding of my condition. If it wasn't for this job I have no clue what I would be doing...I went to school for child and youth counseling...but realized real quick that wasn't going to work. It's so hard to have this effect your life so much. I feel for you! Hope everything works out for you!!!

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I went through a denial phase no I am going to go back to work. cried everyday going home from the pain I hid all day so I wouldn't loose my job. then after a year of denial my Neuro looked me in the face and said are you ready to talk about disability again

So your neuro is now willing and understands your need to be out of work?

actually he was the one pushing it a year before but I was adamant in my mind I'd get better. but within that year I ended up in a walker and needed a shower chair and was falling alot and I finally had to knock it off and swallow my pride and accept it.

I saw him Oct 31st. applied that day online and was approved in 3 months. so I was in bad shape but to me I figured mind over matter I am just going to get better and that was that. the more I pushed my body the more it resisted

My gosh. You utilize a walker? Is this down the pipeline for me? Are or have you started the disability process?

no please don't worry everyone is different and it's not the sfn that really does it it's the primary cause of it. do they know what your primary cause is yet? I wasn't trying to scare you just showing the emotional battle I had with coming to the terms I was disabled. everyone is very different.

yes I applied Oct 31st 2015 and was approved Feb 2016 so about 3.5 months maybe it took

Do far neurologists from my hometown and at NYU say sfn. This sept I'm going to another neurologist who supposedly does research with EM an we'll see what he says.

I have EM also but secondary like sfn. but my Neuro is doing a research study on parent and child EM and one of the mutations we have scn9a. I am third generation.

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Ain't crossed that road yet, my employer has been great to this point letting​ me change hours and changing my job up some as an Engineer.

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