I stopped working last June when my symptoms were worsening and interfering with my ability to be productive and do my job. Since then I sold my house and moved in with family because I didn't know if I was going to have any income. I've been through many hoops while being approved for FMLA, a medical leave of absence, short term disability and now long term disability through my employer.
As a requirement of my employer's long term disability program, I'm required to file for SSDI. I'm nervous about it because so many people don't get approved. The long term disability case manager put me in touch with a company called IBI. They will be filing the SSDI claim for me and have attorney's to represent me if need be. I've got my fingers crossed. It feels like I've been in limbo forever and I just want to move forward. Its very weird to not be working since I've have been working since I was a teenager.
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Raingrrl
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Morning raingrrl, I hope and pray that you get approved, it's not an easy thing to accept at any time in your life, that you cannot work anymore. I worked for 40 years and it is a shock emotionally, I grew up on a farm where you were taught to work, and now that I don't have the ability like I had, I have found that it's easier if you just accept it and get on with the things you are able to do. Lots of people on here get great satisfaction from volunteering. Blessings for all that you do Jimeka 🦋
Hi @Jimeka! Even though I thought I was prepared for this step, it was/is still a shock emotionally like you said. I worked for the same company for over 30 years believe it or not! I'm working on the acceptance but for a very independent person like myself, its tough to admit I can't do it all anymore. Once I'm able to move back to a place of my own, I think it will be easier. I plan to do some volunteering but don't want to start until I know where I'm going to live because I want it to be close by.
I know exactly what u are going thru, I almost lost my home , ate from food banks because I could not get ssdI horrible!!! I got turned down on my case?? So I got a lawyer and what do u know I got SSDI it took about 3 months but it was worth it. This government is horrible so protect yourself get a lawyer. I worked since I was16 this disease took my life , my ability to work, thank God for SSDI because I could not get welfare so much for our government helping working people . No, I ate cardboard pizza while people who do not lift a finger to work get meat and vegetables, I will do anything to stop welfare now it helps only people who do not deserve the help.
Hi Jude12347 ! Your story is exactly what I fear the most. Its why I put my house up for sale as soon as I could after going on a medical absence for my job. I knew what could be ahead of me and was afraid to risk my home. Now I'm staying with family and while I'm appreciative...its not 'home'. I can't wait until I'm on my own again but the timing of everything couldn't be worse.
I've been through the same recently. It is a major life transition. I had to readjust my self-identity/worth.
Also been through the long-term disability hoops with good outcomes fortunately. Might be looking at SSDI soon. Although I do have a very part-time opportunity for work coming along beginning in May. So that may forestall my need to apply for SSDI.
I did secure an attorney to help me Assure that my long-term disability issues can be addressed when need be. They will help me with the SSDI application. And they have informed me of different things that I need to be cautious of so that I don't lose my long-term disability.
Sounds like many of us have been there or are there at least emotionally with perhaps various financial concerns.
Hi erash ! I'm still in the process of figuring out my new 'normal' and my self identity. Its a tough transition because I'm still in the middle of it all. I'd like to work some but the fatigue and its ability to increase other symptoms makes me believe I can't be reliable in a job. Sigh.
As I was told by the attorney, my job option is known as "sheltered work" which accommodates mobility and fatigue issues by allowing me to complete tasks as able and from my home. I will be resuming online teaching which has that flexibility. While that works for me, I realize it's not an option for everyone.
Since my whole life I identified through my career, I had to look at new ways to measure my self worth. I decided that for me, self worth was really about what made me a good person.
Of course, when meeting someone who says, "and what do you do?" It doesn't work to say, "well, I'm an honest and kind person" 😊 But it does make me feel better to think about myself that way...
Off my soap box, it is definitely hard to redefine ourselves especially when our new normal keeps sliding 😳
Tons of Luck Raingrrl 🍀🍀🍀 and ~hugs~ you know we are always here for you! It is always a shocker when a new chapter in life comes about. And having to readjust not only your life, but your whole way of thinking sometimes, can be, well in my case hazardous! Lol
Sounds like you have everything going in the right direction though ☺
I am still fighting for SSDI, I am finally getting a hearing in June, 2 years after I originally filed. Seems like its easier for some and harder for others. I hired an attorney after my original denial.
Hi Karen-x ! I'm required to file for SSDI by the agreement between my employer and their long term disability adminstration company (Met Life). Its because of stories like yours that I decided to accept the referral to IBI and to allow them to file on my behalf instead of me trying to do it on my own first. They have attorneys that will go to court with me if need be.
I have a good friend who is going through these same hoops and she has a benign brain tumor that causes seizures. She had long term disability through our company but got kicked off of it when she was first denied SSDI. I think she has now been fighting for SSDI for 2 years. I have her story rattling around in my brain and it makes me uneasy about this whole process.
Hang in there Raingrrl, I went through much the same when I transitioned from short term Disability to long-term disability for my arthritis throughout my body. I was declined by federal disability, so hired an attorney and was approved within weeks. That's been over 15 years ago. Then I had the joy of going numb last summer with the beginnings of a MS. Don't let it get to you. Just keep pushing for your rights.
Raingrrl I just got turned down for SSDI for the 2nd time and have applied for a hearing. I'm trying to figure out what I'm going to do during this next phase of my life. I hope I can find as many fun things to do as erash has.
Hi @Iona60! Have you engaged an attorney to help you fight for SSDI? Its such a shame that so many people can't get SSDI without having legal counsel.
I'm making a list of things I want to do once I'm more settled. Erash does do some really fun things, doesn't she! I know to be cautious so that I don't give the impression that I can work when I really can't.
That's a lot of what I've discussed with my attorney.
Bottom line, they are likely to do surveillance on me. They want to keep their $$$ --that unfortunately is their job.
Because of this, I've re-evaluated and prioritized what I do for volunteer work (I have a tendency to overcommit anyway) but I will NOT curtail my other activities and be a hermit. I consider my activity to be my therapy--it's the work I have to do!
Actually, I fear if I stop doing, bc of ms, my brain and body will lose the ability to do (I have some days like that anyway 😔)
I think these are some of the struggles u don't hear much about related to MS disability.
Have been approved for SSDI twice... My best advice? HAVE THE WORST MS AY OF YOUR LIFE when you see their doctors... These are NOT doctors who know abut MS. Don't be afraid to VOCALIZE your pain during their exam.
Sorry to say, you've got to really SHOW them YOUR WORST DAY even if it's not...
It's hard to accept the changes MS brings. Though much of my life has been being a homeschooler, raising kids, and keeping a farm, none of which does any government find useful or important, it's still difficult not being the superwoman I kind of thought I was, and what my husband thinks I am.
I'm sorry for all those who are struggling with the SSDI. I'll never qualify, but know of so many who say one is almost always denied the first time, usually the second time, but if people can be persistent, third time's a charm. Sounds like it's good to have a lawyer on your side.
over 10 years ago i applied for ssdi after being fired. the first two times i applied myself and was denied and the third time i got a lawyer and got it! it took nearly 2 years. i'll note i wasn't even 30 and my symptoms at the time were invisible - serious fatigue and cognitive.
I left the workforce two years ago on permanent disability at age 60. I had my neurologist write up the recommendation. I downloaded the proper forms from the Social Security Administration, filled them out thoroughly and brought them to the appointment I had set up with the local SSA office. I included all the back up I could find including doctors reports, MRI results, etc. I did talk to a disability lawyer over the phone for free. He was recommended by the National Multiple Sclerosis Society. The lawyer gave me tips on how to approach the SSA. I had my wife and caregiver take me. I did need a cane to walk with. Fortunately I was having a really bad MS day. It was hot and I had exercised twice as hard as normal the day before. I was approved in five weeks. Two notes, if you use a lawyer he gets to charge a fee and second, you have to quit working when you file for permanent disability. I received my full Social Security as if I had retired at 67 (my normal retirement age). I could no longer do my job of thirty years because it required that I climb ladders and spend a couple of hours straight on my feet. Good luck.
Thanks RobertCalifornia . Most of my symptoms are invisible so even on my worst days when I feel like h*ll, people not familiar with M.S. don't 'see' my disability. It's been my biggest blessing and my biggest curse.
Hi Raingirl, it's tough holding your hands up and admitting nope, can't manage that anymore. I'm sorry to hear that getting state financial help can be so difficult in the US - 'tis quite a challenge here in the UK too ! Wishing you the best of luck in getting all that you are entitled to, Angela x
Raingrrl , I gave up my dream career a lifetime ago when my first child was born. That was by choice. But years later, after my boys were in school, I decided to go back to work. A few years later, MS hit. Although I put off 'quitting' for a year, my condition didn't improve and I was made to leave that beloved career behind too. I've reinvented myself a few times in my lifetime, and it is a challenge, but sometimes a good one when we discover new things (like abilities and interests) about ourselves. I empathize with you and pray you are able to get the assistance you need now and in the future. I'm happy there are others here who can walk you through the steps you need to go through at this time. 💕
Thanks WAshingtongirl ! I know I need to reinvent myself. Figuring out where to live next is part of it. I sold my last house because I wasn't sure what was going to happen to my income and because I want something smaller without stairs. It feels like I'm not just reinventing myself but my life all at once. It gets overwhelming at times so I try to tell myself to just go step by step. It's a journey not a race.
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