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After 18 years of MS and working I'm about to go on disability

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    After 18 years of MS and working I'm about to go on disability

    I'm terrified I'm seeing my doctor in a week, I've put it off to cover my office. I know the symptoms I know my body I know I've continued to get dramatically worse over the last year. Only held on for a LTD plan I needed to wait a year for. I'm scared and relieved and guilty and nervous and sad and so tired every day. I fought a good battle. Why the guilt that I should still work? Most days I come home crying because of the fatigue and my body just shuts down. I've worked a year with accommodations working from home 2 days but with no feeling in your hands and issues moving stress and job requirements it doesn't help. By 2 I'm falling over myself trying to stay awake with 1000mg of provigil. I feel guilty but I know I need to take care of myself already. I don't know how to tell my bosses.
    Give yourself a hug.

    #2
    It's OK.

    It really is.

    It's OK:
    • to quit working and go on disability.
    • to grieve the loss of your career.
    • to want to continue to feel productive.
    • for awhile, to feel guilty.


    Because we do. But, this is just one more "new normal" to adjust to. And you will. I encourage you to begin to look at this as a new freedom, rather than a new limitation. Without employment, you'll have more time and energy to explore activities that you want to do. You can find new, and enjoyable, ways to be productive. As productive as you want, and as laid-back as you want.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      And I know this I know this is a good thing. I know I've pushed my body past its limits. Sigh. I'm just only 44.
      Give yourself a hug.

      Comment


        #4
        Yeah; too young. I went on SSDI at the age of 46, after 6 years with MS. And, it was time for me, too. It really did end up being a good thing; it was what I needed.

        I've found ways to continue to contribute to society through ways other than employment. I volunteer in my church and community, currently only about 5 hours a week, but it used to be 10 - 15 hours per week. And, I'm working on writing a book about my life and my MS. I started a once a month movie night with 3 women friends (some months, we don't meet, but -- oh well). I also really appreciate the freedom to sleep in, to mess around on computer, to veg in front of the TV, etc.

        Just start dreaming about the freedoms you'll have. But, I don't want to minimize the loss. I think I grieved losing my career for about 3 years before I realized that it really was a blessing, as much as it was a loss.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Sweet pea, I can so relate. I am now home 2 years, and still struggle with it. Like you, worked consistently following diagnosis, had reasonable accommodations from work, but still not enough to keep working.

          Faith has given you some great insight and advice. Assuming you are in the US? If so, just some words of wisdom:
          1. Make sure to read and understand your LTD policy
          2. Most LTD policies from employers require you to file for SSDI, and the benefit they Pay is reduced by any SSDI award.
          3. Make sure you don't get caught in any pre-existing clauses or look back clauses that make you ineligible.
          4. Again, most employer policies have provisions that after 2 years, the definition of disability changes from your "own" occupation, to either "any" or "any reasonable" occupation.
          5. Likewise, most group employer LTD have cutoff at 2 years if cause of disability is depression or anxiety, unless you are in a treatment facility.

          I was denied by both SSDI and employer LTD. It didn't matter that my bosses supported my filing, as with LTD, they don't make the decisions, the insurance company does. In fact,cemployer HR told my boss they could not write anything in support of my case. My doctors also supported the filing.

          I had a lawyer for SSDI and won on appeal, But this was almost 2 year process. Likewise, hired attorney for LTD appeal who specializes in ERISA law. Won that as well, but that was almost one year out. I am now awaiting their review for the 2 year review based on the provisions in the LTD policy.

          On a positive side, I had a separate individual LTD policy. They paid right away and continue to do so.

          I am not telling you the above to scare you, but to be prepared, just in case.

          Make sure you have your doctors' support and your records support it.

          Good luck. Please keep us updated.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Yes; Pennstater gave good advice regarding your LTD policy.

            I was approved, within 3 months for SSDI and waited until approval to apply for LTD benefits, as that seemed to be the most likely way to be approved for that. My contract had already not been renewed, prior to my SSDI application. When I first attempted to apply for SSDI, the HR person informed me that, as I was no longer employed there, I was ineligible.

            Because I had read the LTD info, I was able to explain to her that I had 6 months, following my employment ending, to apply for it. I was able to apply, was approved, and currently receive their $100 minimum, as that is what I am eligible for because I also receive SSDI. By the time I reach retirement age, that $100 per month will have added up to approximately $20,000. And, when I reach retirment age, I will receive retirement for the 10 years I worked for them, and the 20 years that I will have been on disability, so my retirement benefit will be 3x as high. If I had not read their policy and simply accepted what HR told me, I would have missed out on that.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #7
              Pennstater I've read a lot of your posts and knew our situations were very similar I actually was trying to figure out how to send a personal message but couldn't. My company cannot supply me with the LTD policy because it hasn't been officially signed yet but it is done. The insurance company doesn't have one so we are a little blind.

              I've had a lawyer for over a year now because my company originally gave problems with accommodations. My disability lawyer is ready. My issues will hit anxiety stress but I have many physical problems now. Walking is hard. Because I have foot drop no feeling in my feet spasms and spacicity driving distances isn't the safest thing but my hands have issues so hand controls which I will get is still a concern. My biggest issues is fatigue. I can't function. 18 years of MS took its tool but my doctor is certain it won't be a problem with SSD the LTD is the issue.
              Give yourself a hug.

              Comment


                #8
                Originally posted by sweetpea63 View Post
                ... our situations were very similar I actually was trying to figure out how to send a personal message but couldn't...
                Sweetpea, MSWorld is not set up for members to be able to send private messages. If you wish, and, at your own risk, your email address may be put in your Profile for all registered, logged-in members to see. Go to your Username on black bar running across top of page > My Settings > Edit Profile**
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  I really knew I couldn't wanted her to know I've read most of her posts.

                  Thank you also as scared as I am you said it best about the guilt and you put a nice positive spin on it.
                  Give yourself a hug.

                  Comment


                    #10
                    Originally posted by sweetpea63 View Post
                    I'm terrified I'm seeing my doctor in a week, I've put it off to cover my office. I know the symptoms I know my body I know I've continued to get dramatically worse over the last year. Only held on for a LTD plan I needed to wait a year for. I'm scared and relieved and guilty and nervous and sad and so tired every day. I fought a good battle. Why the guilt that I should still work? Most days I come home crying because of the fatigue and my body just shuts down. I've worked a year with accommodations working from home 2 days but with no feeling in your hands and issues moving stress and job requirements it doesn't help. By 2 I'm falling over myself trying to stay awake with 1000mg of provigil. I feel guilty but I know I need to take care of myself already. I don't know how to tell my bosses.
                    Faith's advice above is excellent, and exactly my experience: it took me a few years of emotional struggle, grieving and sadness over the loss of my career, but ultimately I realized it was a blessing in disguise to stop working full-time. Pushing myself on a daily basis had started to take its toll, and there was no point because I was never working at what I really loved to do anyway!

                    Now, most of my days are spent resting or doing things that I find creative and fulfilling. There are limitations, sure, but this is where I always wanted to be and if it took MS to get there, I'm OK with that.

                    I would follow the advice here about being careful about how you disclose to your employer, and the timing of claiming LTD/SSDI and the paperwork etc. At one point, my dad gifted me the money to see a lawyer to ensure that my employer couldn't push me around (which they were trying to do). I eventually got what I needed with his help. I highly recommend getting a smart friend or relative or lawyer to help you parse through all of the details, because it can be overwhelming, especially when you're not feeling top notch.

                    Looking forward to your post once you're on the other side and able to rest and care for yourself! Best wishes to you for the best possible outcome.

                    Comment


                      #11
                      Thank you to everyone. Three days until doctor and then the call to the bosses. I think that's what scares me they get NO notice just a call. Can't give notice with disability lol.
                      Give yourself a hug.

                      Comment


                        #12
                        Originally posted by sweetpea63 View Post
                        Thank you to everyone. Three days until doctor and then the call to the bosses. I think that's what scares me they get NO notice just a call. Can't give notice with disability lol.
                        Hi sweetpea63. Good luck with the visit and call.

                        From your other post, I do find it disturbing that neither your employer or insurance carrier can supply the policy. I had a difficult time getting mine, but kept after them and finally did.

                        My company had changed carriers as well, which impacted eligibility criteria, but only for recent hires (12 months prior to start of policy). They had a wait time before being eligible. Since you are a longer term employee, I don't think an insurance carrier change should impact you, but you need the policy to know. In the absence of that, will someone from your HR put in writing that you are in an eligible class, subject of course to carrier review of your medical records? I actually had them do that while I was waiting on the policy.

                        When you call, you don't have to say that you expect to be out permanently. Just that you are going to work with your neuro. This can bide you a little time until you get the policy. But I also know this is difficult to do, as it impacts your boss, colleagues, etc. You can discuss with your lawyer. With my experience, I am very distrustful of LTD carriers and would feel better if you had the LTD policy.

                        I also added an email to my profile if you want to contact me. Again, good luck.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment

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