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    Mid-Life Crisis w/o the Ferrari

    Hi and thank you for the wealth of information posted in these forums.

    I am an active (generally healthy?) 55 year old woman recently diagnosed with RRMS. I had my first symptom in 1998, followed by more. I have had four MRIs. The earliest reports in 2003 speculated about MS/demyelination. I was content to fall off my neurologist's radar.

    But now after two super stressful years, in January 2018 I woke up with my vision gone in one eye. At this point I'm back to 20/40 I guess, but there was no more "we just don't know, so come back whenever" sort of talk.

    Now I'm tasked by my new neuro with researching about 6 drugs and am thankful to have so many choices at this point.

    The cost of all of this is upsetting, and I've already had it with people's philosophical remarks ("well, just take one day at a time and know anything could happen to any of us"). I am more worried about mental stuff than physical stuff (at this point).

    Once on the medication, the best escape I can think of is to find ways to help others and get lost in that. I did a lot of emotional support volunteering for people with AIDS and their loved ones back in the late 80s and early 90s, and loved it. My doctor said I should get someone to counsel me regularly be it a priest, therapist, guru, etc. How have people here who did not have therapists before approach getting one?

    I've always had a good diet but right after the optic neuritis attack, read about the Wahl diet. It is too extreme for me - but I did up the veggies and cut out dairy and virtually all refined sugar, and some major sinus problems and headaches I had during the months before January instantly abated. I think this means my immune system might not be on overdrive like it was.

    Thank you to those who have been fighting through so many different meds and so much pain on behalf of all who come later.

    Rox
    All the best, ~G

    #2
    Hi Rox and Welcome!

    Originally posted by gargantua View Post
    Hi and thank you for the wealth of information posted in these forums.
    It's good to know that you appreciate the forums.

    Originally posted by gargantua View Post
    Once on the medication, the best escape I can think of is to find ways to help others and get lost in that. I did a lot of emotional support volunteering for people with AIDS and their loved ones back in the late 80s and early 90s, and loved it.
    I agree that it's beneficial to get out of ourselves and our own troubles for awhile to focus on others. We can't neglect our own health in doing so, though.

    Originally posted by gargantua View Post
    My doctor said I should get someone to counsel me regularly be it a priest, therapist, guru, etc.
    How have people here who did not have therapists before approach getting one?
    That's a very good idea. I found a therapist by word of mouth - a friend mentioned a therapist who was highly regarded in the area.

    Eating more healthy foods is important too, good for you!

    You said you're physically active, and that's very helpful also. Sounds like you're on the right track for taking good care of yourself.

    If you have any questions, just ask and we'll be glad to help if we can.

    Good luck with whatever med you decide to choose!

    Hope to see more posts from you Rox.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by KoKo View Post
      If you have any questions, just ask and we'll be glad to help if we can.
      Thanks for your warm welcome Koko. I will be reading and will contribute whatever I can.

      All the best,

      Rox
      All the best, ~G

      Comment


        #4
        Originally posted by gargantua View Post
        Hi and thank you for the wealth of information posted in these forums.

        I am an active (generally healthy?) 55 year old woman recently diagnosed with RRMS. I had my first symptom in 1998, followed by more. I have had four MRIs. The earliest reports in 2003 speculated about MS/demyelination. I was content to fall off my neurologist's radar.

        But now after two super stressful years, in January 2018 I woke up with my vision gone in one eye. At this point I'm back to 20/40 I guess, but there was no more "we just don't know, so come back whenever" sort of talk.

        Now I'm tasked by my new neuro with researching about 6 drugs and am thankful to have so many choices at this point.

        The cost of all of this is upsetting, and I've already had it with people's philosophical remarks ("well, just take one day at a time and know anything could happen to any of us"). I am more worried about mental stuff than physical stuff (at this point).

        Once on the medication, the best escape I can think of is to find ways to help others and get lost in that. I did a lot of emotional support volunteering for people with AIDS and their loved ones back in the late 80s and early 90s, and loved it. My doctor said I should get someone to counsel me regularly be it a priest, therapist, guru, etc. How have people here who did not have therapists before approach getting one?

        I've always had a good diet but right after the optic neuritis attack, read about the Wahl diet. It is too extreme for me - but I did up the veggies and cut out dairy and virtually all refined sugar, and some major sinus problems and headaches I had during the months before January instantly abated. I think this means my immune system might not be on overdrive like it was.

        Thank you to those who have been fighting through so many different meds and so much pain on behalf of all who come later.

        Rox
        Welcome, Rox. I am 56, have had MS since 2002. Falling off the radar of doctors wasn't an option for me because of the severity and frequency of my symptoms and flares. However, it still took almost 2 years, 7 MRI's, a 2-week-visit to Mayo Clinic and an untold number of other tests to dx me.

        Thankfully, in spite of that, I was able to continue working for about 6 years, although I had multiple flares and hospitalizations and a few job losses during that period of time. I also have worried more about cognitive problems and mental health problems than physical problems, because, in the first 5-7 years, I had more problems with those. At this point, my mental health and cognition seem stable, but my physical abilities are declining.
        • Where I'm going with this is to say that "getting lost" in volunteering was a good strategy for me after I went on disability (SSDI). For quite a few years, I was able to volunteer on a 5-15 hours per week schedule (more at first, less later on). At this point, I volunteer less than that and focus more on reducing/preventing stress, exercising as I can, eating healthy foods (I need to work harder at that), and pampering myself as I need to, etc.

        • Counselling is something I needed to do, both for myself, and my marriage, during the stressful mental health years of my MS. I just went to a mental health center and found a therapist. I tried several, over a number of years; I didn't change because I was dissatisfied, but because, after a counselling break, the first one was no longer available. I'm not sure how much either of them helped, but, since I can't compare my life "with" therapy to "without" therapy during those stressful times, I'm not sure -- it might have.

          Perhaps a priest or a guru might be alternatives, too, as was suggested to you. In recent years, I've gone, twice, to an acquaintance who provides "peer support" services at a very affordable rate. Again, I don't know if it helped. But, she makes me feel good, so, maybe it does. My suggestion when pursuing counselling -- find someone you are comfortable with.

        • I also have a small group. A group of 6 women. We meet together, once every two weeks to share about our lives with each other and to pray together. I've been in this group for 28 years. The other members are also long-term members: 19 years through 33 years.

        • Another help-me-feel-good activity that I used to do, but, I've kind of neglected it for a long time, is that I used to plan a movie night with 2 or 3 friends once a month. I just put out an email to a bunch of my local friends/acquaintances, asking who would be interested in participating in something like that, and our group was formed. Every month, I'd send out an email to those in our group, we'd agree on a date (always a Saturday evening), and I'd send out 2 or 3 movie suggestions and we'd choose one.


        Best wishes for you, as you find a way to cope with the new challenges that MS is throwing your 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


          #5
          Originally posted by Mamabug View Post
          Welcome, Rox. I am 56, have had MS since 2002. Falling off the radar of doctors wasn't an option for me because of the severity and frequency of my symptoms and flares. However, it still took almost 2 years, 7 MRI's, a 2-week-visit to Mayo Clinic and an untold number of other tests to dx me.

          Thankfully, in spite of that, I was able to continue working for about 6 years, although I had multiple flares and hospitalizations and a few job losses during that period of time. I also have worried more about cognitive problems and mental health problems than physical problems, because, in the first 5-7 years, I had more problems with those. At this point, my mental health and cognition seem stable, but my physical abilities are declining.
          • Where I'm going with this is to say that "getting lost" in volunteering was a good strategy for me after I went on disability (SSDI). For quite a few years, I was able to volunteer on a 5-15 hours per week schedule (more at first, less later on). At this point, I volunteer less than that and focus more on reducing/preventing stress, exercising as I can, eating healthy foods (I need to work harder at that), and pampering myself as I need to, etc.
          • Counselling is something I needed to do, both for myself, and my marriage, during the stressful mental health years of my MS. I just went to a mental health center and found a therapist. I tried several, over a number of years; I didn't change because I was dissatisfied, but because, after a counselling break, the first one was no longer available. I'm not sure how much either of them helped, but, since I can't compare my life "with" therapy to "without" therapy during those stressful times, I'm not sure -- it might have.

            Perhaps a priest or a guru might be alternatives, too, as was suggested to you. In recent years, I've gone, twice, to an acquaintance who provides "peer support" services at a very affordable rate. Again, I don't know if it helped. But, she makes me feel good, so, maybe it does. My suggestion when pursuing counselling -- find someone you are comfortable with.
          • I also have a small group. A group of 6 women. We meet together, once every two weeks to share about our lives with each other and to pray together. I've been in this group for 28 years. The other members are also long-term members: 19 years through 33 years.
          • Another help-me-feel-good activity that I used to do, but, I've kind of neglected it for a long time, is that I used to plan a movie night with 2 or 3 friends once a month. I just put out an email to a bunch of my local friends/acquaintances, asking who would be interested in participating in something like that, and our group was formed. Every month, I'd send out an email to those in our group, we'd agree on a date (always a Saturday evening), and I'd send out 2 or 3 movie suggestions and we'd choose one.

          Best wishes for you, as you find a way to cope with the new challenges that MS is throwing your way.
          Thank you Faith and all my best wishes to you too. You seem like a real community person who is great at sharing and teaching, whether at home, at the doctor's, or with family and friends.

          My "falling off the radar" comment sounded casual, but I ask myself why my doctors did not put 2 x 2 together a bit more, especially when we discussed it early-on and the terms MS and demyelination were written on my MRI reports. I was faithfully going back to one specialist at least annually for routine screenings and for what I know know were minor instances of optic neuritis. Another lesson is to practice over-the top self-advocacy. So here's what I have so far:

          * Self-awareness about medical care, over and above (the doctor is not always one step ahead)
          * Finding peace, with others (helping, enjoying, communing)

          Thank you again for all of the information you have shared based on your long experience with MS.

          My goal is to make any of my posts helpful to others if possible, too.

          Rox
          All the best, ~G

          Comment


            #6
            Originally posted by gargantua View Post
            Thank you Faith and all my best wishes to you too. You seem like a real community person who is great at sharing and teaching, whether at home, at the doctor's, or with family and friends.
            ...

            My goal is to make any of my posts helpful to others if possible, too.

            Rox
            Thanks for your kind comments, Rox. My background (educational background and career background), prior to disability, was in social work and early childhood. Although I didn't have a degree in education, it always interested me too.

            In recent years, I've had to grieve the losses, again, that MS has challenged me with -- the latest being that I simply have less energy and ability to be involved in the community and to volunteer. Those things filled my life after my kids were grown and my career ended. At this point, I'm thankful for my husband, for adult children, for grandchildren (almost 6 months old and almost 2), who enrich my life even though they live far away, and for the other support systems I have in my life.

            I like your comments about self awareness and self-advocacy. Just reading them and noticing your ability to easily verbalize them tells me that they impact the way you live your life.
            ~ 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
              Originally posted by Mamabug View Post
              Thanks for your kind comments, Rox. My background (educational background and career background), prior to disability, was in social work and early childhood. Although I didn't have a degree in education, it always interested me too.
              I am sorry MS has changed the way you can work. I hope that you keep getting opportunities to share your gifts (as you do on msworld).

              Originally posted by Mamabug View Post
              I like your comments about self awareness and self-advocacy. Just reading them and noticing your ability to easily verbalize them tells me that they impact the way you live your life.
              [/QUOTE]

              Thank you Faith. My self advocacy needs improvement and now there are such... clear opportunities.

              At this point I know it is easy to think finding things to be grateful for will get me through this. Hearing you express your gratitude about your family, after all of your challenges, helps.

              Rox
              All the best, ~G

              Comment

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