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Hello and name change

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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • #1

    Hello and name change

    Hi all. My name is Leon Miller. For several hours today I had the user name “Bigheart4.” Then I discovered someone else had “Bigheart” so I changed mine to Largehearted. Anyway I am looking forward to many great dialogues in this section of this wonderful board. One thing for sure. As I face the difficulty of life with an incurable disease, it makes me pause and think about those things that are really important to me, family, relationships, faith etc.

    Lisa thanks again for all your hard work.
    Peace,
    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness
    Tags: None
  • #2
    Re: Hello and name change

    [quote="Bigheart4"]Hi all. My name is Leon Miller. For several hours today I had the user name “Bigheart4.” Then I discovered someone else had “Bigheart” so I changed mine to Largehearted. Anyway I am looking forward to many great dialogues in this section of this wonderful board. One thing for sure. As I face the difficulty of life with an incurable disease, it makes me pause and think about those things that are really important to me, family, relationships, faith etc.

    Lisa thanks again for all your hard work.
    Peace,
    Leon [Nothing is as gentle as strength and nothing is as strong as gentleness]
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment

    • #3
      Leon and the rest,

      I have found in the past 7 years that many of us living with HCM deal with it in many different ways. The stress of a "genetic" condition, the fear we may have "passed it" to our children, the questions of "why me" and the ultimate question "why did God let this happen".
      None of these questions have easy answers, some may have no answer at all. What I can say is that every bit helps when looking for comfort, support and attempting to live a normal life.

      I am not a religious person - I was raised Lutheran (mom Lutheran and dad Catholic) - I married a good Jewish guy and we are raising our daughter to respect all parts of her heritage - religious and ethnic.

      Are there answers to our problems in prayer? Maybe - I sure know it can’t hurt!

      Is there comfort knowing others care? I think so!

      Is there value in sharing your thoughts here and sharing a prayer with others? I think so!

      Leon and others will help to keep the GodSquad moving along and to provide you with any help, guidance or just to chat regarding some non-medical issues in your life with HCM.

      I do pray, in my own way each day for all of us. I pray for good health, I pray families will get proper screenings, I pray we can stop needless deaths and I pray that we each are given the strength to LIVE our lives and enjoy our families and friends.

      I look forward to many postings ahead...some may make us cry, others may make us think, some will make us laugh but all will enlighten us in someway.

      Thank you Leon for your assistance on this board!

      Best wishes,
      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

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      • #4
        I have three mottos in life when it comes to hard times.

        What doesn't kill me makes me stronger!

        Build a bridge and get over it.

        Don't worry about the small stuff! It's all small stuff.

        I know the second one sounds harsh but there is not alot we can do about actually having the disease. But once we get over the diagnosis (bridge) then we can start accomplishing what it take to stay healthy.

        Ahhhh! grasshopper

        Mary S.

        Comment

        • #5
          About 7 1/2 years ago I had an accident where I lost my ring finger. At the time I was almost 25 and hadn't been married a year yet. I prayed a lot during that time that God would be able to save my finger. I was at one of the best hospitals that worked with hand injuries, but they were unable to save it. Although my finger couldn't be saved, God answered my prayers in a different way - I never got that pit in the bottom of my stomch that I kept waiting to happen.

          With HCM, we should have know much earlier - at least a year. A year prior to my sons diagnosis, I had an echo done and was told that my family members needed to be checked. When I asked about my kids, the doctor said only if they showed up with a murmur. If my son hadn't shown up with a murmur at an 18 month check-up, we'd still be in the dark. The murmur isn't supposed to be related to his HCM, but just an innocent murmur. If that's the case, then we're lucky he had the murmur which lead to the echo, which led to the diagnosis of myself, my son, and my father. Some wouldn't consider it lucky to be diagnosed, but I'm glad we know. We know now that my son will need to watch out for those activities that would really strain his heart, like competive sports.

          I don't need to look for the answers of why for either, for some reason I've always felt God has had a hand in helping me out in both situations. I'm just glad that I've got some feeling of comfort - no matter it comes from.

          Amy N.

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