Longtime Member Publishes a Book, Coping with Chronic Illness Successfully

[Cherie]

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.

[Gabriella7]

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

[NeuroNixed Craig]

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.

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.

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.

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.

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.

[Cherie]

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.

[PattiLee]

Nicely done!!

Congratulations!!

[Gabriella7]

Very informative book!

Craig, I really enjoyed reading about your journey to diagnosis and how you have coped is remarkable. I could relate to so very much of your journey that seemed to parallel my journey. It is a great resource of information and I plan on "paying it forward" to the Multiple Sclerosis Association of America's lending library at the end of the year along with some other books on MS. This will give MS patients who might not be able to buy the book the opportunity to read it. This is a free service of MSAA whereby they will lend out books and even send you a prepaid bag to return the books to them. I have donated to them in the past as they are a worthy organization who really help people who have MS with practical assistance. I will reread it again and retain all the vital information in my resource folder. The book has a lot of information that other books don't have such as making plans for your future with a disability as well as planning your final arrangements. I'm working on my bucket list as well.

I like your Mickey Mouse cookie jar. I think we have decided to donate ourselves to Emory's Medical University. But....we may change our minds and just be "dust in the wind".

BTW, After taking an early disability retirement from Federal Civil Service having worked for 25 years, I re-invented myself and have a home-based travel agency which I have been operating since 1994. My daughter-in-law is the "Walt Disney World" expert. My last trip to Disney was in 2002 and I had to rent a wheelchair the second day.

Again.... Congratulations on a job well done.

Gabriella:angel:

[NeuroNixed Craig]

Hi Gabriella!

All I can say is a heartfelt "Thank You," for giving me and the book a chance. Your comments and insights mean a great deal to me and I'm sure to many other people, both members and lurkers. You've demonstrated to me I accomplished my objective and that is to provide benefit and value to the reading experience from my book.

Ironically, after all of the planning and anticipation of my immediate family all going to Walt Disney World, staying at the Polynesian Resort for seven days, I was not able to accompany them due to my medical circumstances. It was the first time my personal doctor said "definitely not," because there was no way he could justify it in his professional and personal medical opinion. It just was not in my best interest both short term or long term, doing more potential permanent harm than good. Upon their return, my kid's and wife totally agreed with the decision.

Gabriella, thank you again for the great exchange of ideas and opinions in this thread because you caused me to think from several different perspectives which allowed me to "respond," versus "react" to your first post.

Again, with sincere gratitude and appreciation,

[Cherie]

Hope your birthday yesterday was wonderful! For a while, I was concerned you might not see this birthday but, what a gift! YOU are a gift to us and so many and for that I am grateful.

[NeuroNixed Craig]

Hope your birthday yesterday was wonderful! For a while, I was concerned you might not see this birthday but, what a gift! YOU are a gift to us and so many and for that I am grateful.

Thank you Cherie!

Although I was not as concerned about making to this birthday as I am dealing with my current circumstances, what's ahead and reaching the next. My main goal for next year is to attend my son's wedding in Columbus, OH in June.

As always, thank you for your support and concern, my friend.

Your friend,