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  • Describe Your Journey With MG in 3 Words

    Posted by Jodi Enders on August 2, 2022 at 1:37 pm

    Myasthenia gravis is a unique illness. All of us living with MG have varying illness experiences. I have dealt with frustration, feeling like the odds are stacked against me often, and I have also been very grateful for the lessons MG has taught me young. So I would describe my journey living with MG as illuminating, demanding, and rewarding.

    How would you describe your perspective of life with MG in 3 words?

    Lynette Wilson replied 1 year, 6 months ago 37 Members · 51 Replies
  • 51 Replies
  • Pdro Hrtdo

    Member
    August 3, 2022 at 2:24 pm

    1.-Frustration: it was annoying not know what was happening to my body for over 3 months.

    2.-Discovery: I had to learn to listen to my body and to be more conscious of my every day habits.

    3.-Appreciation: I was pushed to appreciate the little things in life I didn’t have or couldn’t do after myasthenia gravis. I also had to work on my anxiety and for that I’m very grateful.

    • Lynette Wilson

      Member
      December 3, 2022 at 12:53 am

      Unusual different weird

  • EDWARD CLAGHORN

    Member
    August 3, 2022 at 7:17 pm

    Every day different

  • Jennie Morris

    Member
    August 3, 2022 at 8:17 pm

    Whack-a-mole

    • Troy

      Member
      August 8, 2022 at 1:32 pm

      LOL… Absolutely love it!  It’s is like whack-a-mole. It keeps popping up and you best it down and it pops up again!  Beautifully described

    • Laurie Eason

      Member
      August 13, 2022 at 12:23 pm

      Yes! Too much like it!

  • Jerry Trapp

    Member
    August 3, 2022 at 8:45 pm

    A consistent deterioration

    • William E Freeman

      Member
      August 5, 2022 at 7:52 pm

      Could not describe it any better

  • Joanne Gurion

    Member
    August 3, 2022 at 9:24 pm

    Anxiety

    Acceptance

    Adaptation

  • Beverly Bounds

    Member
    August 4, 2022 at 6:22 am

    Numbness
    Sadness
    Acceptance

  • Leigh

    Member
    August 5, 2022 at 1:01 am

    Frustration

    Sadness

    Pivot

  • William E Freeman

    Member
    August 5, 2022 at 8:03 pm

    My words have already been stated, accept I might include stubbornness – meaning not accepting completely the limitations imposed upon me. I try and do as much as I can, as often as I can and not allow MG to totally ruin my quality of life. This may mean rest periods, pain periods, but I want to remain independent for as long as I can.  I force myself to be active, even if only for short periods of time and my activity may be reduced or limited.  I refuse to allow MG to beat me.

    • Jeaninne

      Member
      November 29, 2022 at 8:15 pm

      My thoughts exactly!!!

      Thank you for sharing.

  • Celeste M Matthews

    Member
    August 5, 2022 at 8:53 pm

    It really sucks.

  • Troy

    Member
    August 5, 2022 at 10:41 pm

    ITS MY BODY!

  • Bill Suphan

    Member
    August 6, 2022 at 5:12 am

    Ruined my retirement.

    • paul spychalski

      Member
      November 30, 2022 at 6:00 pm

      Yes, mine also. Can’t walk much at all.

  • Douglas Manning

    Member
    August 6, 2022 at 4:16 pm

    My neverending journey

  • David S

    Member
    August 10, 2022 at 7:40 pm

    It still sucks.

  • Jeannine Edgerley

    Member
    August 10, 2022 at 8:19 pm

    Never ending and sadness.

  • Eric Werve

    Member
    August 17, 2022 at 9:08 pm

    Insidiously unique

  • Jeaninne

    Member
    September 29, 2022 at 5:13 am

    Wack-a-Mole. Fits it perfectly.

  • Jeaninne

    Member
    September 29, 2022 at 5:14 am

    Wack-a-Mole. Fits it perfectly.

  • Jeaninne

    Member
    September 29, 2022 at 5:14 am

    Wack-a-Mole. Fits it perfectly.

  • Jeaninne

    Member
    September 29, 2022 at 5:14 am

    Wack-a-Mole. Fits it perfectly.

  • Maureen Gosz

    Member
    October 6, 2022 at 1:22 pm

    Don’t make plans.

  • MikeS

    Member
    October 8, 2022 at 2:21 am

    Unexpected

    Unpredictable

    Uncurable

  • Leora Diana

    Member
    October 8, 2022 at 9:25 pm

    Unexpected

    Annoying

    Unpredictable

  • Virginia Webb

    Member
    October 8, 2022 at 10:38 pm

    Handle with care.  Relatively stable with 60 mg Mestinon 3x a day

    and lifestyle/dietary mindfulness.

  • Virginia Webb

    Member
    October 8, 2022 at 10:38 pm

    Handle with care.

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