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    Back after 3 years

    Hello all.

    I have not been reading or posting anything on MSWorld for 2-3 years, just reading the newsletter. Well, I missed a few of those too because of an email address change. Life has been busy, and more than challenging, for the last few years. I realize, though, that I need this. It's an outlet and a way to communicate with others who can relate to my day to day experiences. I will make time for it, at least on the weekends. Time is a prescious thing, but there is no such thing as 'not having time' for something. If you really want to do something, you make the time. So here I am.

    'Relaxer' is not so much what I am but what I yearn to be. Relaxing is one of the biggest challenges for me, both physically and mentally. For a while I was practicing meditation in the morning, but have gotten away from it. That's something else to make time for, for me.

    I'm a middle-aged woman, married with one teenage child, and live in a major metropolitan area in the northeast. My definitive diagnosis of RR MS was over 15 years ago. At the time, my symptoms were pretty much invisible to others, 'silent' or 'quiet' the doctors would say. I've never had very clearly defined relapses, rather more of a creeping and slow progression of disability. The official diagnosis is something secondary now. I've been using a power chair for more than two years.

    I still work full time, and intend to continue doing so as long as I possibly can, although I would probably not have a hard time qualfying for long term disability from my employer or SSDI. My income is the primary income for my family, and work is something that gives me a sense of self different from any other aspect of life. I enjoy my work, even though it can be hectic and stressful, I've been at the same job for many years, and it has mostly remained the same as far as my functioning and abilities. I have not disclosed my official diagnosis, but have discussed my disability with my boss and coworkers in terms of a neurological problem. Some have surely figured out what my problem is, but do not bring it up directly to me. That is how I would prefer to keep things, unless there is really a need for them to know. Of course I should not be pitied or discriminated against if I were to disclose, but I have heard too many stories from others who were forced out of their jobs, 'disabled' by their employers. That said, I am beginning to at least entertain thoughts of what will happen when the nature of working has to change for me. It already has in some small ways -- occasionally working from home, getting a few amenities closer to my desk, etc.

    On MS World I look forward to connecting with people in similar situations -- people who work full time even though they can no longer walk, people who are married with children and know the juggling act that entails. Also anyone dealing with emotional difficulties, spasticity, meds, you know, the general laundry list.

    Over the years I have been on many different disease modifying drugs, interspersed with long periods of drying out or taking nothing - Avonex, Tysabri, Copaxone, Gilenya, and currently Tecfidera.

    It's Super Bowl Sunday, and we are having some friends over later, so I'll wrap this up for now ...

    Enjoy your day, and I look forward to becoming an active participant of this community!

    #2
    Welcome back, Relaxer! What a great overview of you and your history with MS..thanks!

    Enjoy Super Bowl Sunday and hope to see and hear from you soon on MSWorld.

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      #3
      WELCOME BACK! Glad to have you whenever time allows.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        Welcome Home Relaxer!!

        Glad to know you are still working..good for you!!

        Please continue to share.

        Offering you HOPE and Serenity~

        Jan
        I believe in miracles~!
        2004 Benign MS 2008 NOT MS
        Finally DX: RR MS 02.24.10

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