I’ve heard countless horror stories from folks as they work their way through SSA Disability. It’s quite a daunting task. A lot of you have been actively seeking this for many years through many denials. I commend you all. I on the other hand just received “my letter”...acceptance letter that is. I have had very mixed emotions as a result. I thought I would be so happy when that day would arrive, but I was almost in a depressed state. When I really started analyzing the reality of what just took place there were two very strong issues that were overwhelmingly obvious to me.
1) The finality of it all. I’m 100% fully disabled.
2) It only took me 5 months to be approved! Talk about feeling guilty! Many of you are in worse shape than I am. So why did it only take me 5 months and a dear friend of mine is still applying over & over after a 7 year battle! Don’t take this the wrong way...I’m very grateful for what I’ve been given. Hmm...I’m not sure given is the right word. I worked for 40 years paying into the SSA. Maybe I should say I received what I’m entitled to. This is not an entitlement post. That’s not really the objective.
For those of you who’ve been at this “game that affects people’s lives” for a long time I feel compelled to say I’m sorry I got it so quick! I’m sorry you’re still in the hunt after multiple attempts. Maybe we need to look into the whys. There are so many unanswered questions.
Forever grateful & thankful for each of you.
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robster1
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the thing that disturbed me the most was getting a lifetime handicap tag my dr.wrote I have a chronic disease and there is no cure.and I got approved by ss. in 16 days,I was on long term disabilty from work and they told me it was ending and I had to go on ss..they probably helped me
I had just gone through my short term at work & had gotten 2 monthly long term checks when I was approved. I’m still working a few hour a week just to stay active and have some self worth, but it’s becoming more difficult as time goes on. I’ve gotta find a hobby. Any suggestions?
that probably was the hardest thing for me to do,leave work.I didn't think that ever would be a problem,but it was.the 1st month I cleaned my house room by room and when the dust settled.found that alot of my self esteem and worth was wrapped up in that job.I have worked for 42 years and if I say so I was good at my job.that was a surprise for me.I went through a period of depression and finding the right anti depressant .Then I settled into how I was going to make the most of this ms!I went to physical therapy,changed my diet,got all my dr's. on as a team.I was successful,so now I am enjoying my life as much as I can.I decided,I could go through this life giving into this disease,or pull my boot straps up.and make as much joy as I can everyday.I read ,do needlepoint and now painting rocks!My life hasn't turned out like I expected,I was planning to retire ,travel,spend more time with friends and family.I can still do those things,just have to plan better.EVERYTHING is still possible with this disease,maybe not forever,so try to put peace and joy in your days.don't misunderstand me,there were lots and lots of tears and sometimes now. I guess the key word for the day is Adjust,adjust,adjust,and it will be on going,you will find your niche.the best to you Robster1
I was wondering if you are able to work a little and receive disability. I have a part time job I do on the computer that I would likely still be able to do after I am physically unable to do my full time job. The part time job pays less hourly and is limited in numbers so it wouldn't be enough to pay the bills.
I would prefer to continue to do that job and collect disability if possible when the time comes.
Do you know how much you are allowed to work while receiving disability?
It’s slightly over $1200/month for SSDI. I work a few hours a week totaling about $1000/month. I’m slightly under (not that I could do any more anyway).
One other thing...be sure to research on the SSA website. It will tell you all the ins and outs. I’ve got a contractor group I must report my income through my actual paystubs to them.
Don’t feel guilty as it is what you worked for and paid into. It’s your money you are receiving not an entitlement you should feel. I was approved right away with MS, Stroke, and cancer ♋️. Just had that five month waiting period to start drawing SSDI. I had paid into this for over 45 years and that’s why it’s there. It’s like playing poker, we have our hand and have to play what we have not someone else’s hand. Make the best of what you have and turn it over to the Lord and he will lead your way👍🙏😉😊 Ken 🐾🐾
I understand what you are saying. You worked for it. I received my Supplemental Security Income (SSI ) within five months. And I had to apply for SSI because the government stated that I hadn't worked long enough to get SSA. But the money they took out of my check when I was working, I can not get that back and I don't think that's fair. I worked for it regardless of how many years I worked. I didn't ask to be disabled.
I can understand the feelings associated with getting that "disabled" label and why those feeling would be mixed. It is one thing to work toward getting the needed aid, but it feels different when it's "official."
I hope you quickly come to shed any false guilt. (It's false because you did nothing wrong!) We're all SO happy that you were able to get through the quagmire of bureaucracy and get something you need. I wish it were that quick for everyone, and no one really can say why it the way it is. One person seems profoundly disabled, but must wait for years, while someone else who seems less disabled can work through the system relatively quickly. I am just so glad for you to not have to face that hurdle anymore. I appreciate your gratitude for it. You need not apologize!
I got accepted almost immediately, however, that was due to years of work by my Neurologist, who had been recommending to me to "retire" for years which I refused, again and again. He had me see a neuropsychologist, did sleep studies, c-pap use,...anything & everything. I also had 4 other doctors singing the same song for years. When I applied, I had finally given in to it. Finally? It took years after I finally agreed it was time. I had a business with several employees, and their families to think of. I had to find a new owner. What pushed me along especially at the end, was I had a very good friend halfway across the country, where I used to live and work, who I told when I left, I was only leaving for maybe 5 years?, then I'd be back. Well 5 turned into 10......, though I talked or emailed with him (prior to the years of texting), regularly for 25? years. I took the family, one who was born there, another from where we moved to shortly thereafter, back to see him and did all the old haunts. Anyway, he got cancer. And was getting worse and worse. In to hospice by the time I was trying to finalize the sale of the business. Forget the fact that I was a blooming onion by then, trying to still run a business, and sell it too, worrying about all my employee's livelihood. In a way, they were like family, and we treated them like family. I could tell stories about that, but not enough space on this site.......The whole group stayed till they retired. Luckily I still had several too young to retire,... or their kids now working for us in their father's footsteps.
Anyway, when I applied, I had 5 doctors signing off on me, plus the 2 from social security, who felt sorry for the sad shape I was in applying? Yeah, they hadn't seen anything yet! Once I got through all that, I was able to head back out west, see my friend I left, now well into his home hospice, only waiting to die. He was truly so happy to see me there! He was the toughest, ex-military retired turned truck driver...... He died in less than a week after I arrived. Saw him buried via full military burial. Many guns and all... And headed back home, only to get have finish business done. I had cleaned up any loose ends. Who had time to be sad about going on disability? That hit me later. Years later. Maybe when I drifted into comatose? Could I go back? No way. Do you miss it? YES! Now it's all in the past. Something you can never go back to, just like the friend I lost shortly thereafter. It's gone. But, if I...and I..., yeah, that wouldn't work because I can't, and I can't anymore.
Oh yeah, kind of off track there!!! Luckily I had a very good neurologist, who actually had another equally as impressive non-medial career! prior to changing into medicine to become a top internationally recognized neurologist specializing in M.S.? That was impressive! As it was I could afford him! Back in those days. He did prepare me for the day I would have to transition, from running 2 businesses concurrently, to disability, which was inevitable in his eyes. So....maybe the transition to disability wasn't long in terms of social security. It was in terms of prior to applying. By the time I applied, it was overdue in the eyes of several doctors? 5 of mine, 2 on the disability review's side. Yeah, I'd give up everything to roll the clock back XX years, but till someone comes up with how to do that? Let's see....now that I can watch TV again, after years of thick brain fog....there's some sci-fi that they actually do that!!!??? I can't seem to decide which year to go back to???
Mark what a great boss! How caring and to be there for your dying friend, admirable. I consider my JOB now is to take care of me. Keeps me busy too some days. I also volunteer online so I can put my skills to use even if I no longer have my career.
Yes it was my Primary doc who had to convince me to stop working. I kept calling new symptoms STRESS. Who doesn't have stress when working with a chronic disease.
I was actually relieved that I was accepted. I knew I had to start a DMT but couldn't afford it without insurance & my insurance was running out. Please don't feel guilty for being able to accomplish a monumental task. I too was lucky to be approved in less than 6 months. It takes a good doctor and a lot of details and foot work & the luck of the draw person that can read your application at SSI to get approved. My husband had to apply a couple of years ago due to chronic back and heart problems. The person at SSI didn't bother to read the whole application. They got to the back problem and stopped reading and automatically denied him. He had to go to our lawyer to get approved.
hairbrain4 you are SO RIGHT about it taking a good dr or doctors who keep really good notes in your record to help your case. I was approved in 5 months after my application was submitted. I was shocked and relieved as my disability was going to be running out soon and I didn't know what I was going to do. I was able to stay on my job's insurance for a certain amount of time and when my insurance was going to run out, medicare had kicked in. I was very lucky (blessed) that things turned out the way they did.
None of us has it easy. Like you could compare pain or something. I am blessed to be able to work 10 years after diagnosis but I work for myself. No pension, no insurance benefits. Since my husband gets SSD I can’t afford to work part time even though that would be better for my health. And yes I get that we got lucky he was approved the first time. Thanks for the gratitude reminder 🌞
There are so many variables that it would be almost impossible to say why you got your acceptance notice way easier than your friend. When I first did mine I went through an attorney (Major Depression). What did me in? My college degree! The Judge made her determination saying that due to my Degree I knew exactly how to act & day. This was on my 3rd attempt & everyone on her panel - physicians, therapists, psychologist - were for me yet she made her decision against me. I waited another year and filed myself - I had my
Disability in 3 months, retroactive from my first filing. Go figure! Do NOT feel bad. This will only help you.
I am so thankful that you were approved so quickly. I was approved in 2 months, no attorney or anything like that, and a dear friend, with MS, waited for years, with her attorney appealing
and no results. It doesn't seem fair, but we just Thank God for taking care of us, pray for our friends and move forward. Have a blessed day.
Yes good topic. Folks don't know that some of us disability and later soc security is our only income. Back to being poor.
I found waiting the 2 years for Medicare wiped out my savings as I had to pay my health insurance premiums in full.
But I have a different attitude. Yes I lost my career. Yes, I got my SSDI in 4 months, but finally go to rest and take care of me!
BTW, Alsup is a National organization that helps you with the disability application and journey in obtaining an answer. Their claim is that they will get you an answer in 4 months. AND I got my answer in 4 months. I was assigned a case worker. You give them your provider names/numbers and they do the work for you.
Yes, there is a formula to being allowed SSDI or SSI (for low income folks). Your age is considered and how many years you paid into the system. For me, I automatically went from short term disability on my job to long term without doing anything but giving Alsup my information.
Benefit? I immediately started to improve without the stressors of working. It wasn't the MS but the seizures I started getting and cognitive memory black outs that got me SSDI.
They figure if you can be treated with meds, you don't need SSDI.
Also, its very important to make sure your Primary is the hub of your case and willing to fill out the paperwork. Most specialists do not, but will send in your records.
Some doctor needs to make the case for why you can no longer work.
REMEMBER, you can go back to work IF you improve.
And now my attitude is my new JOB is to take care of Me! I always say, I could be worse.
A couple things-I also was accepted on the first try right after I was diagnosed. And to be honest, I probably wasn’t all that disabled. I was however, experiencing quite a few relapses and depression was setting in. So since I was receiving ssdi, I had little desire to return to work. A few years later, when I finally decided that MS was no longer going to define who I was, I returned to full time work, and here’s what happened to my ssdi, which I of course, immediately reported my plan. I still received my ssdi for six months, and was told that if for some reason I was no longer able to work within 3 years, I could just call and my payments would immediately be re-instated. Which unfortunately happened 2-1/2 years into my journey. I then began a rather low paying part time position which wasn’t enough to affect my ssdi.
2 years ago, I was no longer able to work at all, now I am still trying to figure out what I can do, as my days are just filled with light cooking, cleaning, and some tv. I also read 2-3 books a week, btw, Jack Reacher stories are awesome for action fans.
So not sure what my point is, but had fun telling my story.
You’re telling your coping story. I love it. That is so healthy to share things of this nature. Btw, I’m a big time fan of Jack Reacher stories as well. They’re awesome!God bless you my friend
I was approved in 2.5yrs so I under the frustration with the SSDI. You just have to find new hobbies and things that make you the happiest. Hang in there Robster1. I did work part time for a little while also. Now I just go and do as I can.
It took me about 5 years to finally get approved. I first applied for disability when my MS forced me to quit my job. I kept getting letters from the organization who was helping me, saying there were no records of my diagnosis or treatments for MS. At the same time the primary care doctor Blue Cross Blue Sheild had assigned to me (who said she didn't deal with MS, only vaccines and mamagrams) was telling me she couldn't get me in to see a neurologist because BCBS couldn't find any reason for me to see one. So, thinking maybe there was some issue with the University Hospital releasing my records, I went down to the UH's records department, myself. That was when I found out all records older than 2005 went up in flames at a warehouse fire. Well, I went to the appointments social security had scheduled for me to prove all the medical issues I was claiming were lies. Except, RRMS was doing its thing: swelling in optic nerve had gone down. The weakness in my left leg had gone away, and the virtigo I'd had in one eye finally straightened out. And nobody can SEE numbness, and my hands turning into vibrating flippers hadn't happened yet. So we (myself and the org) decided to hold off further application efforts until I could get in to see a neurologist. That finally happened two years ago when I was rushed to the University Hospital ER, comatose with three brain bleeds! All it took was one MRI, and an ER doctor seeing all the demylination in my brain, following protocol and calling in THE doctor who started and ran the MS clinic at the University Hospital. He assigned my current neurologist to my case. With five months of hospital stay, my BCBS case worker moved double time, to reactivate my disability application. I'd rolled in to see the social security/disability neuropthimologist--again, to prove everything was a lie. Two weeks later, I got the letter saying I'd been approved for disability.
So mine, too, was fast, if you ignore the first application years before. And while getting the approval has lifted a huge weight off my shoulders, what depressed me was finding out WHY the application went through: I was declared legally blind. I will never drive again, and likely will never photograph again (which was my passion and career).
I just read your “Bio”. What has happened to our world? What you went through - had to go through! This never should have happened! My heart goes out to you.
Finality or Beginning. I too was at this crossroad and knew I had to make the right choice. I always lean to the high road and I know you do as well. Thanks for sharing!
Okay, I don't have SSDI yet, I am just starting the process. Last year I was in pseudo similar situation at a car race. I had run the first five races, getting slower and slower each time. For the final run, I could not get in my car for the last run. Scott, who was in the lead, came over and said I'll drive for you, I approved, but was in tears. He did the run and beat his own time by 3 seconds. So, I lost but the car won, that was my work but it showed that I couldn't drive competitively any more.
So what did I do? I modified Scott's car. This season we'll know If I'm still capable of suspension design. I'll still run, but it will be for fun!
Once I got mine sent in it only took 3 months. It does have a finality that they agreed so quickly I needed it. It does make you feel so disabled. If that makes sense. They say once you are over 55 it is easier but I know someone older than me that broke her back and was denied. I felt so bad for her. She clearly can't work anymore but they couldn't see what she is dealing with on a daily basis. Sometimes it's the doctors report that clinches it. I don't know who decides people's fate but they need to walk a mile in there shoes.
There's nothing to be sorry about. Um happy to hear you are done with the whole process, it's a pain. And I can't imagine your friend fighting for it after 7 years. But it happens that way so you'll just give up and lose your right to SSD. This is a learning process so I'm grateful so many have such varied responses that I'm learning more here about MS than from any research I've done.
Thank you Sassysmom. I’m so happy you’re getting a lot out of this. So many good folks wanting to live life to the fullest & wanting to share about it as well as some of the not so good stuff that we all need to hear.
I was approved in about 2 months, first try. The deciding judge said said it was ridiculous that they even made me drag my body into the place they did it and it was a clear cut case of severe disability. So grateful all these years later!
Congratulations Robster1! I am waiting as well. I have been denied 2 times. I am grateful either way because God has always provided for me and always will. It would be nice to receive it, but if not, I know it will happen one day. For those of us who continue to wait, be encouraged it will all work out one way or another😊 Agian, Congrads Robster 1!! You deserve it!!!
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