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  • Anonymous
      Post count: 93172

      Forgot. I explained last year, but you know how Grave’s affects your memory!

      The words “Mitakuye Oyasin” are Lakota Sioux and mean, loosely translated, “All My Relations” and basically relate to the belief that all living things, on the earth, above the earth and in the earth, are related–the Sacred Circle.

      I try to live by that premise.

      As for the eye disease, I hope no one thinks I am putting down the eye portion of this disease. My contention is that people seem to think that because my eyes aren’t involved, I don’t have much wrong. I have permanent heart damage from sustained high heart rate and other things. I am now 10 months postRAI and 6 months on replacement hormones and am still hyper–can’t seem to get it regulated. I have other problems related to this that they are working on and I get as frustrated as you all do sometimes. I am sorry if it seems I take it out on you. Sometimes, it is just real rough to come home and feel like this in an empty house!

      My love to all…..

      Mitakuye Oyasin

        Post count: 93172

        Val, I do know how you feel and your mention of coming home to an empty house made me think of the many times I felt like the only person on earth without any connections. It is a lonely disease when you live alone. And I too have problems from dealing with hyperness for years. I am 15 months post RAI with normal levels for the first time. Some of us have the eye problem in addition to being hyper. You have posted so many positive things I hope you are doing okay.

          Post count: 93172

          Hi, Valerie!

          No put downs are taken or intended. I would hope that everyone realizes
          the uniqueness of our situation and disease. Although we have different
          symptoms, choose different treatments, and react in different ways
          physically and emotionally, we still have Graves’ disease. No matter
          how we’re feeling for the day, we need to respect each other’s opinions
          and support each other’s needs. There’s no harm in discussion,
          especially when it can be a meeting of the minds and help educate all
          of us. (I can only “hear” you if you “tell” me.)

          Bottom line, we want/need a national spokesperson that will educate
          the public about ALL aspects of Graves’ disease. Your thyroid and
          heart problems are just as valid of a concern as my eye problems. Both
          sides need to be heard, and this spokesperson better be ready to share
          info about the *total* disease and not just her/his own experience. I
          actually start to pity the person that has to fill those shoes for this
          group. S/he’ll never be able to please everyone.

          I would hope that this would be a point in the NGDF development where
          the doctors on the executive board could add medical/research info to
          these national ads and interviews. It looks like big things will be
          coming our way if we play our cards right. Way to go, Jake and Nancy,
          for getting this campaign off the ground!

          Take good care of yourself, Val. I know that you’ve gone through some
          tough times. Keeping looking for those rainbows.

          Wishing you health and happiness, Debby

          P.S. I’ve given my five cents worth – I’ll be quiet now. :)

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