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Thread: Longtime Member Publishes a Book, Coping with Chronic Illness Successfully

  1. #11
    Distinguished Community Member SalpalSally's Avatar
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    Still reading your book, Craig and, so far, loving it. I'm also in the middle of a good mystery, so it may be a little while before I finish. I'll do a report on Amazon, as well.
    Love, Sally


    "The best way out is always through". Robert Frost







  2. #12
    Community Member NeuroNixed Craig's Avatar
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    Thank you Sally for taking the time to read my book and sharing your thoughts as you go along. I think you will be able to fully enjoy both books at the same time and I'm happy you enjoy reading. For those who have read my book you will understand the significance of this next statement. After a long search I found and purchased the perfect Mickey Mouse Cookie Jar which they stopped making in 1980. I will attempt to stick the image here so you can see it.

    Mickey Mouse Cookie Jar Box Shot 2.jpg
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

  3. #13
    Community Member NeuroNixed Craig's Avatar
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    Quote Originally Posted by Gabriella7 View Post
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    You can go to Amazon.com and the site will allow you to review a lot of the book. Craig gives his prospective on how to live with his disease successfully and I admire his courage and determination in doing so. He doesn't have MS so the challenges are going to be different for each person. I wish him much success with the book. He writes his biographical journey and it is written in a motivational theme along the lines of other books which he has in his personal library.
    I sincerely appreciate your comments as positive as they may appear. I've been thinking a great deal about your post ever since I first read it and have actively discussed your conclusion with many people. If you will allow me, I would like to share some of my thoughts on your post and eventual conclusion.

    While I believe everyone has an opinion and full rights to express their opinion, I would like to address a few points you made earlier. I find it very interesting you make a final determination about a book simply by reading what is posted in the information on the book seller's site. The fact that I do not have an MS diagnosis in relation to the information shared throughout the book is not at all relevant, as the entire book is dealing with anyone who is chronically ill and dealing with challenges. An MS diagnosis is not required to quantify validity of the book's message. You made a broad-stroked statement my not having MS appears to invalidate the challenges presented, based only on what you read, when in reality my symptoms are not unlike someone who is dealing with severe PPMS. Although, I have the added stress of my prognoses being terminal. Not everyone diagnosed with MS has the same symptoms as can be revealed within this forum.

    Quote Originally Posted by Gabriella7 View Post
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    I have more books written by women with MS as I feel I can relate to the problems that women have that men do not have. In that vane more men would probably relate to Craig's book.Gabriella
    Now here is where lack of complete information and improper conjecture lead to inapplicable conclusions. It is fine you prefer to read specifically MS related books and then only those written by women. Albeit, I believe the result is a very narrow view of the big picture and presents limited thinking on such an extensive subject. To state as a point of fact the book is geared and appreciated by more men than would be by women is a comment not relevant in truth what-so-ever. Again, this may be your personal opinion but your statement presents as if this is a given. Ironically of all the responses, telephone calls, emails, letters, facebook messages and comments on forums, the vast majority are from very appreciative women. The ratio running at approximately 12 to15 women to each man. I only present this to show how important actually reading an entire book would yield better benefit to thoughts and the importance of perspective on any one subject, is so important.

    Gabriella, I mean no malice in my observations and comments directly addressing your posts, yet I felt strongly prompted to respond from another perspective for the readers to consider, especially those who would invest the time to read the entire book. In this case, I believe reviewing the above points suggests many times in life there may be no right or wrong, simply it is what it is to each person, therefore, we are in a position to agree to disagree. I do respect the time and interest you demonstrated in reviewing the book's basic sales site and presenting your comments here. That means a great deal to me and I appreciate it in all respects.

    Finally Gabriella, I do apologize for "running off at the keys." That and tending to ramble while talking has been a residual affect of my near fatal brain stem stroke and it really irritates me. I can only imagine how other people feel. Thank you for reading my response with patience and tolerance.
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

  4. #14
    Distinguished Community Member Cherie's Avatar
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    Craig,
    I did not sense a rambling or any of the loss of focus on the point at hand that comes with rambling. What you had to say was clear, concise and to the point.

    Although there are reviews on Amazon that will give the potential reader a "taste" of the book, I could never assume to promote a book in any way, shape or form just by reading reviews. For me the first 1/3 of the book was somewhat difficult to wade through as you tended to skip from topic to topic (or ramble ) there and I made the mistake of trying to read it in a crowded waiting room so lost much of what should have sunk in. And it was your story and I was familiar with it!

    The last 1/3 is a must read for EVERYBODY who must make permanent changes to lifestyle, financial management, etc. It is the nuts and bolts of this writing. Some people who prefer novels or light reading might find this less appealing. But face it, we are all dealing with our own mortality to some degree than others and You, Craig, are facing that end or transition far sooner than most of us reading. I found the organization of "putting one's house in order" concise, practical, helpful and probably one of the things of greatest value in this writing.

  5. #15
    Community Member NeuroNixed Craig's Avatar
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    Quote Originally Posted by Cherie View Post
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    Craig,
    I did not sense a rambling or any of the loss of focus on the point at hand that comes with rambling. What you had to say was clear, concise and to the point.

    Although there are reviews on Amazon that will give the potential reader a "taste" of the book, I could never assume to promote a book in any way, shape or form just by reading reviews. For me the first 1/3 of the book was somewhat difficult to wade through as you tended to skip from topic to topic (or ramble ) there and I made the mistake of trying to read it in a crowded waiting room so lost much of what should have sunk in. And it was your story and I was familiar with it!

    The last 1/3 is a must read for EVERYBODY who must make permanent changes to lifestyle, financial management, etc. It is the nuts and bolts of this writing. Some people who prefer novels or light reading might find this less appealing. But face it, we are all dealing with our own mortality to some degree than others and You, Craig, are facing that end or transition far sooner than most of us reading. I found the organization of "putting one's house in order" concise, practical, helpful and probably one of the things of greatest value in this writing.
    WOW! Cherie, I wish I could have put it so clearly. Maybe the wrong person wrote this book. You are spot on about those who read novels or light reading and that's OK too. Ironically, this book was never meant to be published, only shared with my children and grandchildren, but it took on a life of its own. I never expected nor intended to create something that would please everyone. The thought and/or objective itself would be a fools errand.

    I felt Gabriella brought out some very good points in such a well thought out and concise manner, I wished to address them as best I could from another perspective. All in all, I felt the experience very rewarding working my way through the process of evaluating and understanding her perspective.

    Your perspective, however, is always very clear, easy to understand and from a perspective worthy of learning something new. I greatly appreciate your reviews and contributions based on your personal, professional knowledge and experience. No matter how I look at this, it is a valuable learning experience for me stimulating a chance to converse with so many other people at a level I never anticipated. Based upon this current evaluation of the book, I am so relieved you were not subjected to the first four (4) versions. I may have suffered bodily harm as a result. :o

    As always Cherie, thank you my friend.
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

  6. #16
    Distinguished Community Member Cherie's Avatar
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    Craig,
    One thing that your book nudged me to do is to explore other avenues of income other than SSDI and to use what brain power was left and build upon it. To that end, I have attended a couple of seminars on financial planning and managing what I do have (totally exhausting) and now have the opportunity to learn further online and build on something previously so foreign to me.

    I think this book has different foci for different readers which is why I initially said that , while this is fast reading, it is a book that deserves to be revisited over and over as one is bound to get something different or enhanced out of it with each new exposure.

    Thank you for providing a vehicle that empowered me to take action in a direction I never would have without that prompting.

    You are a gift.

  7. #17
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    Craig, I actually was able to read the inside pages of your book in your words for several pages which was your personal history. I do owe you an apology as I should have waited to post my comments after reading the entire book. I wasn't basing what I said on the book seller's or others comments but on your words. I did order your book last week from Amazon and should be receiving it in a few weeks. I am in the process of reading another book on MS written by a MD so I'll have to finish it first before I start your book. Sometimes, I read a book two or three times in order to remember what I have read due to cognitive issues.

    Since I have had MS for 45 years, I have progressed through the stages of evaluation, adapting, and overcoming several times over the years. I have reinvented my life on several levels as my health has declined. I am in the final stage of progression and judging from what I read I am passed my "expiration date by about 10 years". I also have cognitive dysfunction, sleep inversion, chronic pain, bladder/bowel incontinence, and other mobility issues which are different from day to day. I feel your pain and I'm sorry if I added any additonal stress to your life. I really didn't mean to.

    I have found that women's issues are better written about by women and that is the reason I personally seek books written by women who are either MD's with helpful information on dealing with the medical problems affecting women with MS or personal biographical books written by a women. Some issues are difficult to even speak about with my male urologist or neurologist. My bookcase is filled with both men and women who have written books on MS. I admire your courage in putting your life "out there" for all to read and I'm looking forward to reading the remainder of your book.

    Again, I do apologize for my hasty remarks when I only had part of your book on which to base my opinion. To be honest with you, I don't aspire to be able to jump hanging from my ankles on a bungee cord, climb a mountain, nor para-sail 1,000 feet but do applaud you for doing what you desired. In my opinion that would take a lot of testosterone which I do not have.

    My days of "putting on my big girl pants" and doing what I desire through sheer willpower and determination have long passed.

    I still have hope for the future because without hope we have nothing to hold on to.......Keep your faith alive........Remember we are all terminal and no one can predict the future.

    Blessings,
    Gabriella
    Last edited by Gabriella7; 10-15-2011 at 09:35 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

  8. #18
    Community Member NeuroNixed Craig's Avatar
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    Quote Originally Posted by Gabriella7 View Post
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    Craig, I actually was able to read the inside pages of your book in your words for several pages which was your personal history. I do owe you an apology as I should have waited to post my comments after reading the entire book.
    First Gabriella, no apology is necessary as there was no hint of offense in your comments. One of the reasons I took so long to respond was to insure I was not "reacting" from possibly taking your post the wrong way, thus discussing it with other people in an effort not to misinterpret your meaning or intent. You have shocked and impressed me here by commenting on your thoughts regarding reading the entire book.

    Quote Originally Posted by Gabriella7 View Post
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    I wasn't basing what I said on the book seller's or others comments but on your words. I did order your book last week from Amazon and should be receiving it in a few days. I am in the process of reading another book on MS written by a MD so I'll have to finish it first before I start your book.
    I appreciate you ordering the book and my sincere hope is you have much more fun reading it than one written by an MD. Based on many other responses, be prepared to use a highlighter, dog-ear the pages and write notes in the margin. This appears to one of those books you may feel prompted to read several times.

    Quote Originally Posted by Gabriella7 View Post
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    Since I have had MS for 45 years, I have progressed through the stages of evaluation, adapting, and overcoming several times over the years. I have reinvented my life on several levels as my health has declined. I am in the final stage of the progression and judging from what I read I am passed my "expiration date by about 10 years" I also have cognitive dysfunction, sleep inversion, chronic pain, bladder/bowel, and other mobility issues which are different from day to day. I feel your pain and I'm sorry if I added any additonal stress to your life. I really didn't mean to.
    Yes! You are a proven veteran of chronic illness and all of its insidious twists and turns it presents in our lives. I detect you still have a very good sense of humor and strong resolve should you find that blue ink stamp with an expiration date, you will try to wash it off.

    Quote Originally Posted by Gabriella7 View Post
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    I have found that women's issues are better written about by women and that is the reason I personally seek books written by women who are either MD's with helpful information on dealing with the medical problems affecting women with MS or personal biographical books written by a women. Some issues are difficult to even speak with my male neurologist about. My bookcase is filled with both men and women who have written books on MS. I admire your courage in putting your life "out there" for all to read and I'm looking forward to reading the remainder of your book.
    I can only agree 100% with you for your reading selections and requirements in reading what you relate to the best. It only makes good common sense. Thank you for your supportive comment, "I admire your courage in putting your life 'out there'." I figure what can anyone do to me as a result? Abusing or attacking a totally disable person does not look good on one's resume, after all.

    Quote Originally Posted by Gabriella7 View Post
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    Again, I do apologize for my hasty remarks when I only had part of your book on which to base my opinion. To be honest with you, I don't aspire to jump hanging from my ankles on a bungee cord, climb a mountain, nor para-sail 1,000 feet but do applaud you for doing what you desired. My days of "putting on my big girl pants" and doing what I desire through sheer willpower and determination have long passed.

    I still have hope for the future because without hope we have nothing to hold on to.......Keep your faith alive....

    Gabriella
    WOW Gabriella! Now this was a fun, enlightening response to read, the result being it appears we are both really on the same page. Again, no apology is necessary and I shall not hold it against you for not wanting to experience the same "stunts" as a requirement to enjoy life or my book. Referencing the "putting on big girl pants," may have been misplaced in hindsight, because in my own personal experience at this point simply finding my "big boy pants" and maneuvering to get them on without falling off the bed and into the wall is becoming more of a challenge everyday.

    Thank you for responding in a very informative and entertaining manner allowing me the opportunity to better get to know you as a person rather than just another forum poster. I must concede after reading this response our position as now changed to, "agreeing to agree" while having fun at the same time.
    NeuroNixed Craig
    Living Life On My Terms
    No Excuses No Regrets
    Richmond, VA, USA

  9. #19
    Distinguished Community Member Cherie's Avatar
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    Gabriella,
    What a classy lady! You went the extra mile (or two) and make a conscious effort to understand what Craig had said and done and continued to dialogue. I admire you for that and am very grateful. Thank you and enjoy once the book is in your hands.

  10. #20

    Red face Nicely done!!

    Congratulations!!

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