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Showing posts with label Facebook. Show all posts
Showing posts with label Facebook. Show all posts

Monday, July 2, 2012

Reflections on Multiple Sclerosis, an Enigma

It's my fifth year anniversary of living with the knowledge that I am diagnosed with multiple sclerosis. If you've read my book, you know that I'd had symptoms of something long before I had a diagnosis. I'm going to feature this book for this week, and offer the discount I've been offering week by week for other books of mine. But I first want to talk about multiple sclerosis: not about the diagnosis, and not about the "treatments." I want to talk about the disease itself, and about some of the people who are involved in the fight against it.

Recent news articles have revealed that Jack Osbourne has been diagnosed, and that his mother, Sharon, has shared her feelings about her son's diagnosis. People Magazine ran a headline on its cover, quoting her as saying "I will not let my son die!"  That headline misrepresents multiple sclerosis as a killer; while some who have primary progressive multiple sclerosis do, in the end, die of complications involving their autonomic systems such as breathing, the disease does not "strike young people down" and immediately cause death. It does strike them down in terms of mobility and other critical life functions. For many people with multiple sclerosis (sometimes referred to as PWMS in the literature) vision is a susceptible loss, in some cases permanent but in many more transient. The utter unpredictability of multiple sclerosis damage and symptoms is what provokes anxiety and depression in those who have it, and those conditions also cause a host of others: insomnia, loss of appetite or emotional over-eating and weight gain, loss of self-worth and initiative, and often loss of employment and income.
Types of MS
Types of MS (Photo credit: Wikipedia)

Another person in the news is Mitt Romney's wife, Ann, who has lived with multiple sclerosis for a long time, and has spoken of her challenges in physically keeping up with the presidential campaign. She has also borne some criticism for making multiple sclerosis look easy.

For both of these PWMS, money and lifestyle certainly are factors in choosing their treatments, while many others are struggling to make ends meet, having lost their chosen employments due to weaknesses that stem from the symptoms of multiple sclerosis. The expense of treatments is high, and differs in the United States depending on an individual's health insurance policy's caps and co-pays.

To whom do PWMS turn for advocacy, assistance, and advice? The National Multiple Sclerosis Society has run campaigns for years in an effort to raise money for research funding. They also fund advertisements to raise awareness for multiple sclerosis, and maintain a website that hosts videos offering explanations of the symptoms via interviews with patients and doctors alike.

I learned recently that forty-five  years ago, while I was a senior in high school and then a freshman in college, Barbra Streisand made a video on behalf of people with multiple sclerosis. I then checked on Facebook, but found she has moved on to support Women's Heart Health. There are others who are working to raise awareness of multiple sclerosis and of the need for funding toward a cure.

I'll post more this week on multiple sclerosis. It is an enigma: no one understands the cause and so their 'treatments' are all a shot in the dark (pardon the pun.) But I want to remind you that you can buy Multiple Sclerosis an Enigma for half price at my webstore this week. Getting it there guarantees that you will receive an autographed copy (personalized if you wish). It will also be half price at CreateSpace (with the discount code of Y8CV2CHT), and at Smashwords (their discount code is CZ73A)

And here is a recent review of Multiple Sclerosis an Enigma, posted at our page at Facebook:

From Catherine Mahoney:


"This story is a honest look inside the world of a multiple sclerosis patient and woman trying to adjust to the MonSter.It is a good beginner's guide about plotting through the world of auto immune diseases.

She is honest and refreshing sharing her thoughts with the readers and tells the pros and cons of this vague disease. She has a strong support system and knows how to advocate to the physicians for the treatment all ill individuals deserved.

I like the upbeat positive attitude she is developing along her journey to transform her life from a Type A personality to a mellow lady with I do not care attitude and lives for each day.

She was brave enough to put in the Almighty's hands and release herself from Western medication and looking for an better approach to deal with the symptoms of loss muscle and cognitive capabilities.

She explains how it affects her and her husband and the adjustments they made to learn how to dance and not be furious with a personal storm some of us experience everyday.

Kudos for sharing your experiences and trials with others who might have just received the news "You have MS". This is a good book to start to comes to terms with the diagnosis of any autoimmune condition."
Thank you, Catherine!

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Saturday, May 26, 2012

Why do you read this blog?

Englund as Freddy Krueger
I listened in on a free webinar this week. The host was Danny Iny, known today as the "Freddy Krueger of Blogging" He earned that title by 'popping up' everywhere in blogs dedicated to promoting businesses via the internet. I won't try to quote his statistics, but they were amazing. His home base is
WriteLikeFreddy.com

After listening for well over two hours, I paused to think about this blog. It began in the late fall/early winter of 2011. I began by reviewing books I'd read. Soon I was reviewing books that were offered on Facebook's Talking Fiction page, and I began focusing on mysteries. Many of the books were part of a series, something I've always enjoyed reading.

Image representing Smashwords as depicted in C...
When I read I post reviews at Amazon, Goodreads, sometimes Smashwords, and almost always here at Terry's Thoughts and Threads. The reviews I post are always positive, nearly always 'Five Star' reviews. There are books that I've read that I couldn't rank at that level, and so I can't say that I review every book. Sometimes I'll review a book without designating Stars, simply because I want to share the work and promote the author, who no doubt is working very hard to improve their work.

Image representing Blogger as depicted in Crun...
The software here at Blogger has enabled me to expand this blog to include my own books in the margins. I also keep adding to my "Blog List" to promote the blogs that I enjoy reading. Most of them are blogs written by authors, or by people interested in multiple sclerosis. A gadget called Zemanta links whatever I'm writing about to other related stories, which makes it look like I've scoured the internet to find additional readings for you. I do pre-read the links before allowing them to appear beneath my post - a good habit I developed as a teacher of young adolescents.

ZemantaMy 'site statistics' tells me that we've averaged about nine hundred 'pages read' per month in the six months this blog has been appearing. That's about thirty three page views per day. That may not imply that thirty three people came to the blog, as many people read more than one page once they're here. The reader counter tells me that between 7 and 14 readers is an average day.

I think that's not bad for a blog that varies between random thoughts, book promotion, book reviews, and 'other readings' links. The webinar, though, would suggest that's not even a blip on a number line. We have 47 members 'following' the blog. But the webinar suggests that 250 readers a day, or at least a week, would be a modest showing. Successful blogs reach thousands and tens of thousand of readers every day. In order to facilitate that happening, bloggers are advised to blog more often on others' blogs ... "guest blogging" ... to reach others' audiences. I have done a bit of that, writing for another's blog and interviewing an author to feature her work here.

My question for you, then, is: "What are you looking for when you open my blog? Book Reviews? Random Thoughts? The Writing Prompt Responses like April's Health Awareness campaign? "

Danny might suggest that I pick one or two of my own books at a time, and write about their content. He might encourage me to invite other authors who write in that genre to 'guest blog' here at Terry's Thoughts and Threads, optimistically bringing their own audience with them to build my numbers.

 Why do you come here to read? Whatever the reason, I am so happy that you are here!

The comment link below works, and I invite you to respond here, or to me in an email (needlesandpens@comcast.net)
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Sunday, April 8, 2012

Day 8, HAWMC Prompt:: Best Conversation

Day 8 of WEGO Health offers this prompt: "Best conversation I had this week."

I had an online conversation with a woman who found me on Facebook: she is a cousin going back in my maternal grandmother's family line.

The day she contacted me was my mother's birthday, and the name that caught her eye was my mother's mother's maiden name: Buxey. My name then is only a few degrees removed from her own; her maternal grandfather was my grandmother's first cousin.

After ascertaining that I was related to her, she offered to send the information on her branch of the family, and offered me another Facebook contact: that of a retired genealogist in South Africa, who has traced the Buxey family back as far as 1616 in England. This is a branch of our family about which I knew very little. I knew that my grandmother's grandmother had come from county Tyrone, Ireland, had lost her husband on the voyage over, and had then married a young British officer supervising the immigration. Beyond that, information was sketchy at best.

My parents had sat with relatives in the late 1960's to begin to draw up a chart of ancestors this side of the Atlantic. I have a few small pieces of paper written by my father's sister, giving the names of his mother and her brothers who emigrated from Edinburgh and Leith in Scotland, and the larger piece of paper in my parents' hand-writings listing the parents and grandparents of both sides of the family. But in the larger scheme, my mother's information showed only a small portion of her mother's family.

Her mother was one of twelve sisters and brothers, and the information given to me this week shows the descendents of many of those many relatives. With today's internet access, reaching out to a far removed cousin in South Africa seems natural, and common. I've forwarded the information that I gained on to my own sisters and brother, and my mother's nieces and nephews, all of whom will expand our family's branch of this developing lineage.

The history teacher within me marvels at the Canadian great grandparents who were born just before and just after America's Civil War Period, and those names recorded in church papers in England during the Protestant Reformation almost five hundred years ago. It is the family treasure that will be passed on to our own descendants, and one that we might never have known were it not for the internet connections of today.Whatever roles relatives may or may not have played in history's tableau remains to be discovered.

There was a family Bible begun with my parents' wedding in 1940, and it rests with one of my sisters now ... perhaps this new information will be placed within its covers in time. Meanwhile, it is still my intention to continue recording my own portion of the timeline, at the website titled Beyond Old Windows, and in packets of year by year pages tied in ribbons for my one day great great great grandchildren to find, and to share.


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Monday, March 19, 2012

More Thoughts in General:

Hello all,
I don't usually get into medical issues at this blog, but since March is MS Awareness month, I thought I would take some time to "think in ink" as I used to call my notebook scribblings. I don't often write in spiral notebooks any longer, because what I write with pen and paper is not as legible as once it was. I miss that time sitting comfortably in a rocking chair next to the woodstove in winter, or out on the porch in spring and fall. My writing was smoother then, more sentimental, more personal, as a journal would be. When I type on the laptop I'm siting in the living room, in a comfy recliner with my coffee nearby on an electric candle warmer, always aware of an eventual audience.

My writing has changed. This is just a result of life changes, I tell myself. After all, I'm retired ~ I no longer "live by the bells" in a school. I don't have to hurry, I don't have to finish anything today, or prepare anything for tomorrow, or meet anyone's need for information or knowledge. Sometimes I miss being needed, and try to fill an amorphous need of "audience" by writing what I think is a cleverly veiled lesson. I have two Facebook pages where I post information that I think will help others to write, or to quilt, or to understand multiple sclerosis better.. I read others' pages and harvest resources and links that I believe will help my readers.

My sense of self has changed. I am not a public school teacher any longer, though my dreams haven't caught up with that reality. I still dream in and of school settings. I dream of being lost in a building that has been altered while I was absent ... I think of it as my Rip Van Winkle dream. Additional floors have been added to the old brick building, and the budget now requires that our space be shared commercially. In that dream, my classroom is large but shares space with a furniture store specializing in mattresses and pillows. Visitors arrive and observe my teaching, and I am often looking for missing students, aware of the observers' notebooks and pens and dismissive looks. Assistants who in real life were often my greatest supporters appear to take over the classroom, shoo the visitors to the other side of the large room, and organize the children into groups. I most often stand at the side wondering what I might do to be helpful, but I'm clearly just in the way. I eventually follow the visitors and try to talk about mattresses, but realize I know little and have less to offer.

I define myself now as an author, a writer and a poet. In my first few months of retirement, I gathered old writings of mine, while writing new pieces. My six books were self-published, self-edited (several times) and then given or sold to those who had expressed interest. The last book was completed with the help of new on-line colleagues at a website where I could write and submit for review chapter by chapter, earning that service by reviewing what others had written. I was very busy, day and night. And by November I was finished, published, and now marketing my books seeking to embellish my teacher's pension.

I joined more Facebook pages: a page for self-publishers, a page for "indie writers," one for talking about fiction, one one for writers liking writers on Amazon in an effort to boost ratings and earn more promotion. I was then guided by another writer to a site called LinkedIn, where social networking took on another whole level of investment. I had begun this blog, and so connected to a portion of LinkedIn for writers of blogs. I was a member of Goodreads, and so signed on as a volunteer librarian to post books not yet posted so that I could then post my reviews of them, adding to their visibility and anticipating that others would do the same for me. I have probably reviewed close to seventy-five books this year, displaying my reviews on my blog, at Goodreads and on Amazon. Reciprocation has not yet happened in the form of posted reviews, but I have been invited to others' blogs for interviews, which provides more exposure to a wider audience of readers.

Two of the pages I've joined are MS related, and within that smaller circle, writers of books about multiple sclerosis read and review each others' work. The sponsor of those pages also has a website, and a radio connection, and so authors who can donate funds for the station are interveiwed via telephone connection. I've participated in one of those for an author's novel featuring a character with MS; in time I will be able to participate as the interviewed author. I've just received in the mail today a copy of another author's book, and I will read and review that, and she will read and review mine. My book sales of the title Multiple Sclerosis an Enigma did rise when I joined that page and began reviewing there, and my first royalty check for those sales will arrive at the end of this month, from Amazon.

Our local library has invited me to appear as a speaker in their local authors series. I was scheduled for Leap Day at the end of February, and went with a supply of books and a brief list of points I wanted to make about self-publishing. We had our first snow of this very odd winter that night, and so the gathering was small, but they purchased books at the end of the night, and invited me to return this month for an 'encore' presentation to a larger group, which I will do happily. Our local newspaper reporter interviewed Rick and I and wrote a lovely story, published Valentine's week, telling of Rick's dedication and support to his wife with MS. And our local cable television interview show has featured me and my books, and did a second interview to appear this coming weekend, 'spotlighting' multiple sclerosis, the walk for MS research at the end of the month, and the need for more awareness of this condition. Each of these have provided buyers of my books, and for that, I am grateful.

But for now, back to my reading of books from authors who also have multiple sclerosis, and who, as I, have written their story of the altered path MS forms for us. I'll be back with a review of two tomorrow.



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Tuesday, February 7, 2012

Another Review of Multiple Sclerosis an Enigma, and one of a Short Story, too!


February Book Discount: Go to CreateSpace to enter the discount code ND67VUCJ and you will receive a 50% price discount on Multiple Sclerosis an Enigma. This offer expires at the end of February, so don't wait too long to order your co py of my book!




Another Review of Multiple Sclerosis an Enigma


written by Keisha, a Facebook Friend, on February 6, 2012
English: Cervical spine MRI with enhancement s...Image via WikipediaThis book was very encouraging and at the same time it made me want to cry because I could not imagine living with so much pain. Then I read how blessed you are to have a wonderful supportive husband who stood behind you. I also enjoyed reading about your childhood. This truly was one of the best books I have ever read and I think I may read it again. I never understood MS and what people had to go through and how much their life changed once they are diagnosed with it. You are truly a phenomenal woman and I truly look forward to reading more from you. 
If you do not mind I would love to help promote your book on my Facebook page encouraging others to buy this book. I have been talking about your book to my family so much that I have them ordering your book. I love how your book flows and it kept me wanting to know what happened next.
I recommend anyone who has not read this book to buy it. I just finished reading it and it truly made me appreciated my life because of what this author has to deal with and how she proved how strong she had to be. She did not allow herself to be so easy defeated by her diagnosis . She truly inspires and encourages others to deal with any life changing illness. So I am asking everyone to show Mrs. Terry some love and support and order her book and I promise you will be amazed at how incredible this author is.
Thank you, Keisha!

Terry's Review of a Short Story: The Red Volkswagen 
author Rosanne Dingli
five stars
Rosanne Dingli has offered us a brief glimpse into the lives of two very different people, who meet under unusual circumstance.
 We don't learn their names until the end of the story, but we do learn a lot about them. Rosanne skillfully shows rather than tells bits and pieces of the characters' personalities via dream sequences and their behaviors.
The automobile itself is a quiet prop that facilitates some of the actions and interactions.
The ending is open, allowing the reader to speculate on what may or may not result of this chance (or perhaps not so chance) meeting.

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