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Not long ago the internet's main claim to fame was easy access to pornography. It has grown far beyond this just in the last 3 or 4 years. Like cell phones, this is one of the genuine improvements I have seen in the last 50+ years.
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There are several good CLL web sites on the internet. Link: http://tinyurl.com/flsla
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Here is a letter I read this morning on the ACOR site. I have left the names out to preserve their privacy and annonymity.
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I can easily identify with what you're experiencing. Your description of how fatigue affects your ability to work and spend time with your family or friends is a description of how many CLLers suffer with these symptoms.
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I've had to leave my everyday life because of my inability to meet the responsibilities of living alone and dealing effectively with such tasks as taking medications, doing house work, grocery shopping, sorting out bills and a whole host of other demands. As a result, I now reside in a nursing home.
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In the past, I was devoted to my teaching and research and felt both exhilarated and gratified through my work. It was frightfully hard to grasp the reality that my teaching days were over. It's still hard for me to see the wisdom in such statements as, "we are not what we do" or "I'm not a human doing; I'm a human being."
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I, personally find it difficult not to feel guilty about my situation. I realize this is infantile and only exacerbates a tendency to depression, but - - I also feel as if I'm whinnying when these symptoms descend and I can barely crawl out of bed. However, I do have good days. At times I experience the old energy rush when I'm interacting with friends or family, or talking about ideas.
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However, it's difficult to predict just when the good days will emerge. Nevertheless, on the whole, the struggle is worth the fight. Life is good. Others are in the same boat and we learn from one another. I'm a pretty scrappy old survivor who won't give up.
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With Warmest Wishes,
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