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Work, Stress, and Decisions (sorry, long post)

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    #16
    Regarding the disclosure of your condition.....

    This depends on a few factors.
    1) Job/Company - are you good with them? Big? Small? Corporate?
    2) State Laws
    3) Federal Laws

    I am very personal. Down to even notifying that we were expecting or even my birthday. I do not even really socialize with anyone at work, go to work related events, invite people over etc. Basically I am at work to work not make friends. And being that I am young and have several business ventures outside of work which have been a blessing, I do not like people to ask questions and so forth.

    As far as work...I could not keep it a secret any longer. People noticed when I started walking with a limp and sometimes had to use a cane. They noticed when I parked my vehicle in the "designated" spot in the parking garage.....I have a very jealous co-worker who often tries to antagonize me. Needless to say, he made a big deal out of it (yes, out of jealousy) and so I showed up the next day with my handicap sticker.....which accused me of forging looool.
    I couldn't keep it a secret. People noticed that I wasn't as sharp as I used to be. Not that I was slow or lacking...but they noticed I had lost my "mojo" so to say. I was just not interested in going the extra mile whereas before I was jumping all over situations.
    Speaking to HR was inevitable. I had to change work schedule so I would not come into contact with this individual any longer. I blame him for stress that caused me to have 2 major relapses. I am not working remote and he is still snitching on me for things in absentia!!!
    It was not my choice but when I requested to have a schedule change i was denied. When I requested to not be forced to take a lunch break because I haven't in the past decade...I was denied. I bought up state and federal law and they said it's company policy. Although Federal law does not state they are required to give me lunch. It is my choice. However, they said that it would then make others want to do the same. I work 10 hours each day. They want me to take 30 min. of unpaid lunch. That is 10.5 hours. It take me 45 min to drive to work one way. So that is 1.5 hours both ways. So that is 12 hours per day!
    Keep in mind...for 10 years I have not taken a lunch. It was only because of Mr. Snitch that they even asked me to start taking a lunch. Unbelievable.

    So I had no choice to break out the trump card.

    Within 6 mo. I was hospitalized and on LTD indefinitely. As I previously stated, the MRI pre-Copaxone showed how i felt...not so bad. Post-Copaxone showed nearly twice as many lesions and how I felt....12 relapses in the 1.25 years on Copaxone vs. No relapses for 1.5 years prior to Copaxone.
    I started solu-medrol iv and then Tecfidera. After 6 weeks I went back to office provided I work virtual. (ironically after 4 mo. on Tecfidera, 2 relapses requiring iv steroids within 45 days of each other....NO MORE Tecfidera for me..poisons)

    HR has been extremely helpful in working with me. So I feel that depending on your company, fill them in. This way you tie their hands to fire you or reprimand you for 'Poor Performance.' I live in a 'Right-to-Work' state...or as I say 'Right to Fire' state, and if you make them aware it puts up certain barriers. Besides that, if the Company is IPO, with the use of Mass Communications...Media, Social Media etc. I am sure they do not want bad PR. It's definitely something that can be done very fast and effective and send a company to its knees. So you sitting there even collecting a salary while doing NOTHING is far better for them than the bad PR. It is such a thing that can break a company's backbone.

    If you work in such a company, have a sit-down with your management and HR. Explain to them what MS is (because not many people know) and how it affects you, what you go through and how they may be able to accommodate you. I do wish you the best in your endeavors.

    Comment


      #17
      No good answers

      I wish I had good answers. I'm in the same boat, except I have no significant other that could assist financially.

      I'm at work to maintain my health insurance and LTD. I had a contract with my employer with a significant cost if I left before a certain date. I had planned to find a different career path shortly thereafter.

      Unfortunately, I was dx'd about 6 months after that expired. Now I am trapped. I've searched for other jobs, but have found nothing that can match my health & disability coverage.

      I too wonder about the tradeoffs between stress and financial stability. I used to get grumpy when I worked a few 70 hour weeks. Now I get desperate because I can feel myself getting sicker.

      I haven't disclosed at work and I don't intend to until I can no longer hide it and need accommodation.

      You are not alone, although it may seem like it. I'm sorry I can only empathize and not help.

      Comment


        #18
        Originally posted by malaholic View Post
        Many thanks to everyone for the thoughtful responses and empathy.

        Several of you have mentioned SSDI and with the provided links, this is the first time I've looked into those requirements. It is helpful to know a little more about the credit system. I am currently 36 years old, RRMS, and when not in a flare, my symptoms would be considered mild compared to what many on this board experience; I'd not qualify for SSDI disabled criteria. And I hope not to, for as long as possible. But it's a good reality check to realize I'd need to have more recent work history at the time that I would; and also that SSDI benefits would be greater if I were somehow able to keep higher salary.
        Don't rule SSDI out. It was, initially, a very difficult transition for me, after making the decision to apply to for SSDI, to give up a career.

        But, in retrospect, it was, absolutely, the best decision that I could have made.

        It is, truly, a blessing, now, to not have to be employed. My stress is lower. I get to choose how to spend my time.

        I don't just sit at home and do nothing. I've put together a volunteer schedule for myself of a variety of places I enjoy volunteering. When I was employed, I generally worked in the early childhood and social work fields. And, I continue to choose volunteer jobs related to social services and children.

        Instead of working 28 - 30 hours per week, as I used to, I volunteer 10 - 15 hours per week.

        I get to sleep in in the mornings. I have time to schedule my necessary naps during the day. I can choose to take extra vacations, because I am a volunteer.

        And, I am thanked, almost every time I go to a volunteer place, for coming. Now, I was not thanked daily for showing up at a job.

        Consider whether this is an option for you, either now, or, at least, maybe sooner than you would have imagined needing to do it. It really is not all bad.

        Really now. The government pays me to do what I want to do. Can't beat that.

        I've been fortunate that my SSDI income is similar to what I was earning in my part time job. Not everyone's situation works out that way.
        ~ 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


          #19
          I've been in your situation...minus the well paid husband.
          It's not worth it. Get the he** out! Take that 60% of Salary and ride.

          Comment


            #20
            There is bliss waiting on the other side…

            <<Who has been in a similar situation? Any advice/experience to offer? Has anyone taken the big chance of just leaving and been happy they did? Or regretted that they did? Am I stupid for even still considering walking away from the job? I'm just feeling a bit lost right now.>>

            Short version: leaving full-time work and my so-called career was the best decision I have ever made!

            Longer version: every time I felt I "had to" handle a situation one way or another, I knew I had to look more closely at what was going on. For the longest time I didn't disclose at work, or even in my personal life, for good and obvious reasons — but then once I disclosed, everything became ease and low stress. I was able to take care of myself, and ask for what I needed. I was also protected by the law in terms of accommodations at work, which wasn't true when they thought I was just slacking off.

            For the longest time, I didn't think I would be happy if I left full-time work — but then I did, and I have never felt better balanced, or happier. I had to hire a lawyer, but he was able to help me get a part-time job with my same employer, and after going to a location for work became too difficult, I was able to negotiate working from home. My part-time hours are the minimum to allow me to keep health insurance. I paid into a STD/LTD plan through my employer for five years before I had to make a claim — and it saved my bacon when I had my bad flareup that precipitated this life change as I couldn't live for 18 months on $700/mo. or whatever their cutoff is while waiting for SSDI to come through (I still may apply for it — have to decide sooner rather than later).

            My commute is now 10 feet. I wear a bathrobe much of the time, rest in an armchair while I work, and I'm right near the bathroom and the kitchen :-) I can see my dog through the back door lying in the sun in the yard, and my kittens curl up beside me as I work. I can get up and craft or make bread or homemade soup on my break. Once 5 o'clock rolls around, I turn off the computer, and I'm already cozy at home.

            No, I don't make tons of money and it's scary sometimes and I have to pinch every penny, but for the first time in my life — after working full time for more than 35 years —I finally got the chance to discover that the trade-offs are all worth it! I have a blissful, low-stress life full of the things that are important to me, and that means everything in terms of my mental and physical health.

            I will say that it's a long process, though, and you have to feel your way through every stage and expect a wide range of emotions and sometimes internal conflict as you move through them. Just be kind to yourself, and true to what you really feel, and you can't go wrong.

            Comment


              #21
              It sounds like you are weighing all aspects of your decision, which I think is a good thing. I can tell you my experience and some things I faced.

              I was always blessed to be doing work I loved, so leaving a job was difficult. But, before I even had my dx, I did change positions and fields a few times due to my symptoms and relapses, though I didn't know what they were at the time. I worked in the psychiatric field with mentally ill adolescents. When I couldn't physically handle the position, I moved to management. That wasn't physically taxing, but the stress level was doubled. I found I had more physical problems then too, just like you are. So, I changed fields, lower stress and lower physical demands. When I did stop working, and applied for SSDI, this is what helped me get it. I was initially refused, and a hearing was set, but the judge granted it to me without one. His remark was that I had tried to position myself to be able to function in the workplace, but now could not. And that I had paid into SSDI all those years so that I could get it when I needed it.

              Don't discount what stress can do to you on the job. In my second field, I was functioning well. Then the organization I worked for, cared about and loved, stabbed me in the back. They promoted me into a new position that I was quite hesitant to take because of my MS, but it was either take it or not have a job, that they were eliminating the position I was in. By then I had a dx and they were aware of it. They told me it would not be a problem, assured me they knew I would have limitations. So, I stayed. Eventually I was expected to work 70 hour weeks, was expected to fix the previous employee's bad decisions and I only realized later, was the scapegoat for my superior's own bad policies. I had to fire people they didn't want too and field all the questions that would make them look bad. I had worked in the warm, fuzzy field with kids prior to this, I never knew that people could be so cunning. After 7 months, I had a major relapse. My neuro wrote me a script that I would need to be on modified hours, 20 a week. He knew the organization I was working for and was very concerned if I continued on like that. My superior's response...she threw the script at me, told me it was a bad time for her and that her job was in jeopardy from the board. I was devastated. I asked her if she even understood MS. Sad part, this organization actually runs a program with the local MS Society chapter.

              My morale plummeted after that and needless to say, I only felt worse. Because then I didn't want to do my job, not for her. I still worked 40 hours a week after that and 2 months later they told me to resign for health reasons and that there was no other position for me there. After 6 years. I had done most of the HR things there, so when I asked if they had contacted our HR attorney and told him they were requesting I resign because of MS, they couldn't get back to me fast enough to say they would find me another position.
              I didn't accept, and never regretted that. It did force them to offer me a severance package that included my health insurance for a year. That was the most important thing.

              It was difficult not working, my identity was very much tied to what I did for a living. But when I worked full-time, for the years I had MS, I wasn't really living. I only had enough energy to work, nothing before or after. No sustained relationships, no housework, often no dinner! It took me a while to see how it was better for me, but it was. I never made much money, or cared, so not having it didn't bother me at all.

              The moral? First, look ahead at who you are working for and how they may handle your needs in the future. Otherwise you may get blind-sided. Second, never discount what your state of mind can do to your body and vice-versa.
              I have had other relapses since I haven't worked, but none like when I was that stressed. And now I know when my body betrays me, I don't need to get even more stressed by having to figure out how to deal with work. I can enjoy things in my life again.

              Good luck to you and whatever you decide, I know it will be right for you.

              Comment


                #22
                Thanks to those of you who have continued to reply! I've spent the last few days doing research reading through our benefits and policy information to see what I could learn for myself before any future discussions with HR. Unfortunately there are several things that are still unclear to me from what I've read:
                • Flexible hours, work from home, and part time jobs are possibilities that are set up on a case-by-case basis at the discretion of the company and group management. As I have a strong performance history, I think they'd be inclined to consider this for me. That said, it definitely wouldn't work for my current role and it would be dependent on finding a position more amenable to such an arrangement. There are no examples within my current work group, so I need to give some thought and perhaps be ready with a proposal around a new role and responsibilities.
                • However, there is a blurb on the flex work page that mentions that these types of work arrangements should *not* be made to handle a personal or family health issue. I wish I could remember exactly what it said, I need to look it up again. (Did I mention my memory retention is not what it used to be!) So I think disclosure may not be a good plan were I to try to reduce hours. Piper79, thank you for your suggestions on enumerating other reasons for reducing hours!
                • I haven't yet found explicit description of how medical, STD, LTD benefits are affected. I've seen for things like vacation accrual and salary, I'd accrue and earn more slowly at a rate proportional to my reduced hours. I don't see anything that states I'd need to maintain X hours to retain medical benefits, but neither do I see anything that explicitly states that they'd still apply for part-time.


                I'm going to keep researching but I think it's likely I'll have to discuss with HR to interpret this information for sure. I need to think about where I could fit in with reduced hours as I think the discussion would go better were I to go in with a proposal, instead of just asking them to come up with a plan to place me.

                While I'm still not 100% sure where I want to go with this, in the meantime to make things a bit more bearable, I'm scheduling a lot of vacation in the first half of this year - Feb, Mar, and April. That will help give me some good breaks while I think about it. Also, I may as well use up that time I've earned. If I should have to take STD leave for a future flare, I'd feel bad about then taking lots of subsequent vacation. If I use it up proactively, that's better all around. I am hoping that these breaks will help me get to the end of June. If I get to end of June full time, I should qualify for at least a partial bonus to save up for later.

                RGI, I'm glad you've had good results in working with your HR department. Your coworker sounds like a nightmare and I hope you don't still have to deal with his behavior.

                Trevvian, I'm sorry to hear you are in the same boat. I hope that the replies may be helpful to you as well. You used the word "trapped" very aptly; that is indeed how it feels.

                Mamabug, I'm definitely not ruling SSDI out for a later date. I am not 100% clear on how this would be managed for issues that are relapsing/remitting in nature. During my last relapse, which was also my first "Big" relapse, I had vision, balance, and spasticity issues. These haven't resolved 100%, but they aren't significant. Currently in remission, I'm physically very capable (still able to run, hike, etc). I struggle with memory and brain fog much more than I used to, and I guess here is where I might need to ask about the neuropsych test. Anyway, I also wanted to say I think it's great that you use your time and energy to volunteer! I'm sure that is good for you as well as for those that you help.

                Windwalker, tell me how you really feel! I do agree though...I think longer term it's either cut back (part-time) or get out. Let's see if I can make it to June if I use up my vacation. By then hopefully I'll have a part-time plan laid out, or at least know that it's a no-go and have an exit plan.

                PoppyDarling and KSeraSera, thank you both for sharing your journeys. It is encouraging to know that each of you has been through the fear/uncertainty of cutting back or stepping away, and have come out happier and healthier on the other side.

                Thanks again to everyone who has been responding!
                Sx since 2007; Dx Oct. 2014. Started Copaxone after Dx...praying that it's working!

                Comment


                  #23
                  Originally posted by malaholic View Post
                  [*]However, there is a blurb on the flex work page that mentions that these types of work arrangements should *not* be made to handle a personal or family health issue.
                  Interesting. I suspect that the Americans With Disabilities Act would see a health issue as a really good way to provide the appropriate accommodations they might require in order for someone to retain their job.

                  Perhaps, when they mention a "family health issue", that is different than a "personal health issue"? Perhaps it just means that you couldn't make that type of arrangement to care for an ill spouse or child, but, you can for yourself?
                  ~ 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


                    #24
                    It could be that because you have benefits for yourself for sick time, STD, and LTD, as well as FMLA, they want those options used. And the STD and LTD policies had specific clauses on how part time or reduced hours could be used. My former employer had something similar, but it really was on a case by case basis. They gave me that option, but like I said, the financial risk was too high.

                    I actually went to HR, didn't disclose, but told then I had medical tests pending and wanted to understand how FMLA, STD, and LTD worked, should I need it. Likewise, how part time works. I also asked for a copy of the STD and LTD policies so I could review in detail myself and take my time absorbing it. I did disclose after, again, because I was asking for an accommodation.

                    Good luck.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #25
                      Hi Malaholic,

                      I am sorry about your struggles with deciding to leave your career. That is tough! I quit my job in the Fall of 2013 after I was diagnosed with MS because I was not able to physically or mentally do my job anymore.

                      I worked for Easter Seals for kids with autism as a Behavior Interventionist and was on my feet most of the day, playing with kids and driving to the different family homes in one day...very exhausting; however, very rewarding to help the children. I was sad to leave, but I knew the stress of my job would not help my condition and I had to focus on my health.

                      Sounds like mentally your job is too much now. I know extreme stress does not help the course of this disease.

                      I exhausted my state disability benefits after 1 year and now applied for SSDI benefits...this will take 3-6 months to receive a reply. The paperwork and medical records took me days to collect. I worked for 29 years mostly in nutrition so had to list all prior jobs, dates, etcetera. What a task!

                      Hope you make the best decision for you! I wish you the best.
                      Nikki

                      Comment


                        #26
                        My understanding is that if you go from full to part time and then end up on LTD, it will take into account your new part time status. Think 60% of your PT salary versus 60% of your FT salary. My reading of it all is that you (and I) have got to keep all the balls in the air as long as possible and then bow out when you can´t do it at all. Please be very careful of the option of going part time- I´m pretty sure that it affects LTD in a negative and significant way if that becomes your next stop on the journey.

                        Depending on your age, the SS credits required vary quite a bit and it matters how much time passes/has passed between filing for disability SSDI and the last date of employment. The federal govt. website has lots of info but is arranged in a clunky manner that kicks you out of the section you want to be in, so you might want to open an extra window of the main page as well as the one you´re currently viewing.

                        Comment


                          #27
                          Originally posted by Mamabug View Post
                          Perhaps, when they mention a "family health issue", that is different than a "personal health issue"? Perhaps it just means that you couldn't make that type of arrangement to care for an ill spouse or child, but, you can for yourself?
                          Originally posted by pennstater View Post
                          It could be that because you have benefits for yourself for sick time, STD, and LTD, as well as FMLA, they want those options used. And the STD and LTD policies had specific clauses on how part time or reduced hours could be used.
                          I re-looked this up again today as I couldn't remember how it was worded. Here is the text I was referring to (FWA = Flexible Work Arrangement, generally referring to either reduced hours, working remotely, or both):

                          The FWA form and online tool is not to be used when the FWA is sought based on your own medical condition or the medical condition of a family member. A request of that type must be evaluated under other company guidelines, such as a Disability Accommodation Request, Family Medical Leave, or Short Term Disability Leave. Each situation is different and must be addressed on its own. If you have a medical condition that restricts your ability to perform some aspects of your job and are seeking approval of an FWA, please contact your HR or Benefits Representative for more information.

                          I think that matches up pretty well with what PennStater is saying. But the sick leave and STD are meant to be short-term. There's a lot of language in the policy about how the flex arrangements are always at management/company discretion, so I think it does put me at higher risk, especially given the number of org changes I go through yearly. I may get reduced hours approved only to get re-orged and be told I can't do it anymore.

                          Nicoly3467, I'm sorry that you had to step down from your job. Unlike my situation it sounds as though your work was both personally rewarding, and socially important. I guess this has been a somewhat recent decision for you; I hope you are successful in the SSDI application and that it will give you a chance to do what you can, when you can, without all the stress.

                          Temagami - I think you are absolutely right. Going PT would impact my other benefits (LTD, STD) and it's not well-specified in regards to health insurance. We must proceed carefully indeed.

                          Sx since 2007; Dx Oct. 2014. Started Copaxone after Dx...praying that it's working!

                          Comment


                            #28
                            Originally posted by malaholic View Post
                            Temagami - I think you are absolutely right. Going PT would impact my other benefits (LTD, STD) and it's not well-specified in regards to health insurance. We must proceed carefully indeed.

                            Since being diagnosed I work several jobs but keep one part time job 0.5 FTE, 20 hours a week, which offers health benefits at an increased rate and PTO at 50% of what they give full time employees. Unfortunately at 3 different employers none of them had a standard LTD plan that I am eligible for due to having the pre-existing condition of MS. Since I often pick up extra hours most years I meet the minimum for FMLA, which I think equals about 24 hours a week average. Thankfully I haven't ever needed it but it makes me feel safer that I could qualify.

                            For anyone who already has a LTD policy my advice is protect that with your life. I'm solid financially at this point with an excellent income, low spending habits and minimal debt but still can't imagine trying to survive on SSDI only.
                            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                            Anonymous

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