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What was the most challenging or frustrating part of your diagnosis?

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  • Susan Simon moderator
    2 years ago

    The most challenging part of my diagnosis was dealing with the fatigue and lack of stamina. I was teaching first grade and by the end of the day (who am I kidding?) by lunchtime, I felt like I needed a 2 hour nap. I worried constantly whether my young students were getting all of me and all of the attention they so deserved.

    After my diagnosis I became a grandmother to 6 beautiful grandchildren. There were 3 girls and 3 boys born over 8 years. I so wanted to help my daughters with those babies. I wanted to babysit whenever asked. I wanted to get on the floor and play with them. I wanted to be the best grandma ever. I did what I could, but still feel it wasn’t enough. Although my understanding girls tried hard to let me know it was more than enough and they appreciated it.

    Even though I have been cured since a clinical trial in 2013, I still feel like I am slogging through life. My stamina and fatigue still bother me immensely. But I am so appreciative of the fact that I am cured and hopefully that is enough to stop the progression of the liver disease.

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