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Thread: "The Chronic Illness Experience" BOOK CHAT

  1. #31
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    I'm the same Oluwa...I did make it past the Intro but it's slow going cuz there's so much to ponder. It gives you plenty of things to think about.

    I too have been much more into the physical, rather than intellectual..emotional. I think maybe it's Spring that's got me feeling that way. I can't seem to sit still long enough to get thru more than a few pages at a time. I'll get there though. It is sposed to rain thru Friday here, so I may curl up with a blanket one afternoon and tackle a few more pages.

    News says we can expect Sunny and 85 degrees this Sunday and Monday. That sounds heavenly...I like having that to look forward to. Mmmmm....think I'll plan a trip to the nursery later this week and find my fav plants in anticipation of the sun to come.

    Take care....

    Lori

  2. #32
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    well, i am afraid that i must rescind my last post praising the book. Yes, it is full of information, mostly validating what we already experience. It does offer the different ways that people respond to and face chronic illness. It also offers some insight into the various actions that others have to our illness.

    However, i am afraid that, even though she has tried, the author really does not understand the magnitude of chronic illness. The book is long, the sentences are long, and each paragraph is loaded with thought provoking words. But, i can't keep my mind sharp enough for long enough to truly gain anything from all of the reading. I have underlined some "aha" thoughts, but I certainly don't remember them now.

    I am so frustrated over the length of the book itself, it seems like a never-ending project. I guess i need a shortened version.

    I certainly do not want to discourage anyone from reading the book, the author did a great job of addressing our situation, but I am just struggling with the memory part of it.

    Anyone else experiencing this?
    Phyllis

    share a smile today

  3. #33
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    Yes, that's the problem for me too, Phyllis. If my memory isn't sharp...I'm having to read and reread passages and then by the time I think about them...a day or two goes by and 'poof' all the info is out of my head.

    I'm so glad you said something, cuz I was thinking "how the heck am I going to get anywhere with this and be able to retain enough info to actually discuss it on here?"

    I actually stopped and chuckled to myself the other day while reading it, and thought, maybe a better idea would be to assign 1 or 2 pages at a time to read....then stop and discuss...before we try to put more information into our befuddled brains. Maybe it should be a

    V.. E.. R.. Y..

    S.. L.. O.. W..

    B.. O.. O.. K..

    C.. L.. U.. B..

    C.. H.. A.. T..

    with a specially designed curriculum that takes into account Lupus Brain Fog...

    Lori

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    You do have to be in the right mental frame to take on such a book, eh...and I don't have mine framed up, right now it has been mush.

    It sounds like an exhausting book..a brain workout than falls flat.

    I will attempt to read it at some point...along with my 400 page classic novels like To Kill a Mockingbird or East of Eden....one day or they may end up at a yard sale...

    Toodles.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Quote Originally Posted by hatlady View Post
    Hi all!

    Re the book also ran's doc suggested - all I can say, AR, is that you have a rockin' doc who UNDERSTANDS. I found a cc on Amazon, used, for about $15, and later saw one for (sigh) about $2 at Goodwill. If you've got a store near you, check it out. Ours is GREAT for books!

    I've always been a bit leery of "self help" books. Often too "preach-y perfect." But I started reading this one yesterday and have barely been able to put it down. In fact, woke up at 3 a.m. and ended up reading for another hour. Its good. Really good. THe author has an "invisible illness" and she quotes many others - several with lupus - throughout the book. It is written from the heart and the head.

    I know we all don't have it yet, so I'm going to post a couple quotes that stuck out in the introduction. A discussion starting point, perhaps?

    *****
    From page xvi of the introduction:
    "Most of us prefer to pass as healthy, living as normally and fully as we can under the circumstances. We hesitate to inflict our private anxieties on a health-conscious world that sees illness as a temporary abnormality and has little understanding of chronicity."

    And a couple pages later - I thought of Ron, Lars and the other men on the forum:
    page xxi:
    "Passing as healthy is apparently a more urgent matter for men than for women."
    *****

    Do you try to "pass?" Does that increase or decrease frustration and/or stress for you? What happens to you when you're "outed" as having a chronic condition?
    Hi Hatlady,
    Im afraid i wasnt following this thread from the start,
    Could you please supply me with the title of the book?
    Thanks
    I intend to live forever, so far so good

  6. #36
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    Morpheous..it is called The Chronic Illness Experience and how are you doing these days...

    Hugs.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Thanks Oluwa
    Im doing quite well thanks, havent had a relapse in a while, and everything just seems to be looking bright
    How have you been, been a while
    I intend to live forever, so far so good

  8. #38
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    He Morpheus;
    I'm glad to hear that you are doing well. It has been a while since we've heard from you. So good to see your post

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  9. #39
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    hi morpheus,

    oluwa was correct about the name of the book. The author's name is Sheri Register, the book is out of print, so has to be ordered online through a book store or amazon.com
    Phyllis

    share a smile today

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