Hello everybody! I've been MIA for a long time from here I know.

I wanted to share this website with those who are still trying to keep working with MS or even other disabilities.

https://www.ada.gov/2010_regs.htm

My MS has gotten to the point of me being either fired from work or needing to go on disability soon so I shared with everyone at work about the MS and my symptoms.

I had previously been allowed to sit while I work for 4 hours a day but our HR department had lost that information. I got a new note from my doctor saying that I cannot stand while I work, period, due to MS.

So that helps me to keep working if I can keep my sales up enough to stay. I know it might only be a temporary reprieve because I have issues with pain, weak hands, cognitive issues (word recall, forgetting names, handwriting difficulty, bathroom issues, etc...)

I didn't realize the protection provided under the ADA act though. So they really won't want to fire me if I am doing my job in a reasonable manner.

I need to work four more years if I can handle it so I can get early social security at age 62 1/2. I could easily get disability but I'm stubbornly avoiding that for as long as I can because I'm afraid if I do so many things would happen:

I might go stir crazy
I might kill DH or vice-versa
My cognitive decline might accelerate
I might run out of money in my retirement because other than the MS I am fairly healthy (that is the biggest one)

Hi Wiz!!!

I am so glad you posted this link as it is helpful to those who are still working and are able to work outside of the home but need some sort of accommodations to continue to do so.

You are in a tough position but I am amazed and in awe of you. I only work on a very part-time basis and some days even that can exhaust me. As you know, I work from home in a sit down type job transcribing. I cannot imagine working outside of the home and in sales where I need to be on my feet all day. You're awesome!

I hope that you are able to continue in your position for the next 4 years. Killing your honey will only get you more than 4 years in a not so friendly environment.

I miss seeing your posts!!!! But, I know it is hard with working to post often.

hi wiz, good to hear you're back.

if it helps anyone else let me tell you the poor decision i made when i was still working. i was an RN and had worked at my hospital for 18 yrs. i was not in a good way when my MS was dx'd. i was 58 y/o.

i was working FT and had been paying for LTD benefits. i hoped that if i went to PT i could prolong my work life into my 60's. HR told me if i went PT i would loose my LTD benefit. but, i decided to do it. well, only 2 mos later i had to resign. i just couldn't do it. and, so away went my LTD.

i had to pay COBRA for 18 mos til my SSDI was approved. a bad move. think long term when you're still working. hope this experience helps someone.

I remember that Nursenancy. I'm paying for LTD, and luckily my company doesn't have part time employees so if I get to that point I'll just go out on STD and then revert to LTD. We have MetLife for that and I've heard it's very hard to work with them for your benefits. So hopefully if I need them I won't have a tough time.

There are some jobs in my company that are home based but very few and I doubt they would promote me to one of those anyway.

I've found that my productivity has increased greatly now that I have a chair. The main problem is keeping others from sitting in the chair when I get up to do something and then come back to see it's taken.

since you might be closer than further from applying for ssdi let me tell you another of my experiences.

someone at my neuro's office told me to approach the application for ssdi like a thesis. he said to be detailed and to not approach the questions like you were having your best day, but your worst.

when i had it filled out and my drs said they mailed in their info about me i waited......only to get a denial letter (common, right?) which amoung other things said they were missing info from my pcp. i called their office and they said they sent it in. ????? too late, i'd already been denied. so had to pay thru the nose for COBRA for 18 mos. then i hired an attorney and applied again. i was approved. a very expensive and stressful wait.

that's why i always suggest that we get copies of reports, tests, dr notes etc.
i would have done that had i been smarter. then i make a copy of the copies and mail it to them return receipt requested.

also, when i told my neuro that i couldn't work anymore he ordered some other tests, functional capacity studies, to document my weaknesses. so get your drs to document, document, document.

and, ps....if you're taking any meds or even OTC meds get your dr to write an Rx and put it in your medical file. you can write these of on your taxes.

sorry this is so long. i wish someone had told me these things when i was first dx'd.

NurseNancy - Thanks for sharing your experience and tips!

I'm glad to know that your case is moving forward, or at least it sounds as if it is.

Unfortunately, there's a 24-month wait until Medicare starts, or at least there always has been even though many have protested this policy. I haven't heard that it has changed. And I'm not sure if that's 24 months after disability benefits begin to be paid or 24 months after it's determined that your disability began.

Good luck with the psychiatrist. I too was sent to a psychiatrist--and to a clinical psychologist. The psychiatrist interview took only about an hour and wasn't difficult but the clinical psychologist put me through an entire day of tests.

I wasn't told what tests I was being given but later when I requested copies of my medical records I learned that I'd been given an IQ test.

As of 12/22 my application status is still under review. It states that a medical decision has been made and they are working to process the application. It has been over a year since I initially applied. I hope it doesn't take much longer.

I checked online again today but tried not to get my hopes up. My claim has been approved and it's dated 01/16/2018. It's a bittersweet thing to see. I hate having to rely on this but I had to face reality.

In early December I had applied for a part time accounting assistant job because I was really starting to worry about money. I got an interview even though the initial phone interview was awkward with me fumbling some of the answers to questions.

I had a hard time finding the address, then it was hard walking into the interview in my old dress shoes. I thought I had done fairly well until I began to stand up to leave the interview. I looked down to zip my coat and saw that my fly was completely unzipped. As I raised my eyes to shake hands with my interviewer, I saw that she was looking in the same place with a shocked look on her face.

Needless to say, they found somebody else for the job. And even if I had gotten the job, I don't know if I could've manage it working four hours a day when I have two good hours a day at home.

I'm adjusting to my new reality. I'm really happy that I was approved so now I can start worrying about other things.

Congratulations, Wiz. It's a bittersweet thing to get approved for something you never wanted.

When I was approved I was happy and relieved only because I needed the money. It seemed strange getting that first deposit. But Wiz, we earned this benefit. This is not a handout.....we earned it by working years and years.......some of those years while we were battling this disease.

Relax and take some much needed time to rest and not worry about money. You've earned it. I remember all the work you've done over the years......you have earned this.