I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Sincerely,
Lisa Emrich

Thursday, January 31, 2008

Carnival of MS Bloggers #3

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

In Living with Multiple Sclerosis, Anne shares some of her history in and provides reasons why she deals with it the way she has chosen.
"for my husband and my two sons (the only members left of our small family).... for all those friends/acquaintances who tap my knowledge for their personal dilemmas.... for all those who benefit from my educational and disability advocacy.... for my own continuing education of things that matter to me most. And I am still here, after all these years - good, bad and indifferent - and living with Multiple Sclerosis."

For every MSer, the time will come when you must decide whether To Tell or Not To Tell. Depending on what stage of the disease you are in, it is an important question to consider. Anne, from Disabled Not Dead shares her experiences, including some of the disappointing outcomes.
"After dinner, we sat with dessert and the conversation came up again. I then told her about MS and how it affects me. She said, "Anne, I was afraid you were going to tell me you had MS. My mother died of MS." I told her that people rarely DIED of MS, that usually it was a complication FROM MS that killed MS victims. We talked as we cleaned up the kitchen and she turned to me and said, "I don't see how I can remain your friend. I saw what my mother went through and I don't want to see it or go through it with you. I just can't handle it, Anne."I told her that she wasn't as good a friend as I thought she was and we said goodbye and left. We have never seen them again since."

Having chosen "to tell" Callie, blogging at MS My Way, received numerous questions from her co-workers who were curious to know How Was I Diagnosed? Apparently her experience is quite typical and the details may sound familiar to those who have been there. Certainly, go take a gander and see what Callie has to share.

So How Did I Get from There to Here? asks Mandy from MS Maze.

"Five years ago, I had a well-paying full-time job with benefits including health insurance, 401k, a bonus, paid holidays and sick days, and three weeks paid vacation. I had responsibilities I took seriously, thought nothing of putting in extra hours when required and occasionally traveled for business. I was energetic and enjoyed my work. Today, I have a part-time, hourly-paid job with no health benefits, no 401k, no paid holidays or sick days, no paid vacation, and no reason for a bonus.

So how did I get from there to here in five years? A few things contributed, but multiple sclerosis is THE reason I find myself in this position...."


UK blogger, Shirl contemplates "Sleep, Perchance to Dream - for England?""Please excuse the mix of sayings here. Nothing wrong with sleep in itself. It's a good thing. But sleep for me has become a bit too much. As in, I'm having an excess of it and not enjoying it. So, it's for England. As in boring sex.

Tomorrow is another day...except it's here already...where did yesterday go?"


Blogging at Sunshine and Moonlight, Kim describes her frustration as she wonders if she's Robbing Peter to Pay Paul due to her MS.
"...I told the hubby that I felt I was losing myself. Each day, little by little, I was changing. I didn’t like what I saw in the mirror that morning – a tired, young woman, whose spark was quite dim. A young woman who was robbing Peter to pay Paul many different times a day.

I told him that I feel different; that I’m not the bubbly and silly Kim any longer. This, of course, worried me deeply. I will not let M.S. take my spirit. I keep saying that sentence over and over again, but I realized this weekend that M.S. has changed me. So, like everything else, we talked it through."


What could be Scarier than Psycho?
...well a bathtub of course.

Concerned with the effect heat may have on her MS symptoms, Kim says, "I haven’t bathed in 63 days. I don’t use the Jacuzzi to actually “bathe” though, that’s the purpose of the adjacent shower. So, yes, I’ve showered. I just haven’t enjoyed a relaxing bath in over two months."


At BugsBikesBrains, Shauna shares This is My Brain on Drugs ...including photos!! Her story of acceptance is inspiring.
"MS is uncertain, a characteristic about which we MSers like to complain. We don't know what each day will bring. You know what? I realized that this characteristic is something I should celebrate. I may not know what's going to happen, but it just might be great. And I know I have many tomorrows left.

So as much as I, like the rest of humanity, don't like change, I will celebrate my ever changing disease and do what I can do to make a difference."


Jim shares DEEP Thoughts regarding living with disability (deafness), disease (multiple sclerosis), and a spiritual relationship with God in Sunday Morning Spiritual Thoughts: Striving through bumpy road.....
"God's knowledge of my own discouragements are more than just knowledge; His knowledge is more personal, warm, and compassionate. He knows every pains I have been facing. Inside me, I know I am not alone because He is with me. Making a strong conviction to decided on what is affecting me, my attitude is to move on by living in faith. Accepting God's purposes and plans of God however He sees fit in my life. My faith is to believe Him and allow Him to adjust my life according to His will. I am to be aware of obstacles and hindrances I would be facing throughout my life that will throw me off balance. What should motivate me is like an athlete who trains for the Olympics to win a gold medal with such self-discipline and willing to face the challenges."
Jim's blog has become one of my personal daily reads.


So finally, you are reading this for many possible reasons. Perhaps you have MS or know someone living with MS. You enjoy discovering new blogs. Maybe you are a healthcare or policy expert.

Recently here at Brass and Ivory, I asked the question Why My Blog?!! and wondered how this blog will make a difference.

"For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultanting company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way."

So I thank you for helping me to understand the 'whys' and envision the 'hows' of communicating here, online, for myself and with each of you.


The next Carnival of MS Bloggers, a valentine special, will be hosted here on February 14, 2008. Submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, February 12, 2008.

Thank you.
Comments for this post.

Images from National Gallery of Art, Washington, D.C.

Thursday, January 17, 2008

Carnival of MS Bloggers #2

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

¤¤¤ Life ¤¤¤

How would you answer the question, "well, what do you do all day?"
Some days, plans go out of the window as soon as I wake up. We had visitors yesterday. Although I slept well last night, the fatigue today is not correlated to that sleep at all. The fatigue today hurts like I have flu coming. It may well be. But experience tells me this is not likely. It is just my pathetic immune system fighting the rest of my bodily functions that involve the nervous system.

Today, everything has been slow. Walking around the flat, slowly. Washing up the breakfast things took ages. Loading the washing machine...placing the washed clothes on the airing rack...peeling some potatoes and chopping the corned beef that Pete is now cooking into a delicious hash.
Sometimes "the pain of fatigue removes all the emotional impact of fun, fulfilment, creativity, achievement and self-worth." - Shirl's the Girl

Fortunately, Shirl is a "tell it like it is" kinda gal. Go visit her new digs.

¤¤¤ Multiple Sclerosis ¤¤¤

We like to know folks care, but what should they ask?

Over the holidays, I see family and friends I haven't seen for a year and there's always the inevitable awkwardness where they are trying to ask me how I feel. Some of the phrasing includes:
"So, how are you feeling?"
"Is everything going OK?"
"You look great - are you doing all right?"
"What happened to all your hair?"
OK, I don't think the last one has to do with multiple sclerosis, but I do tend to blame my male pattern baldness on MS. As I've said before, what good is MS if I can't blame things on it?
Each time someone asks a question and sincerely wants to know how you're doing, it may be an opportunity to spread awareness about multiple sclerosis. Or it may be a chance to reflect upon how you are managing your MS and working to move it off centerstage.

Sometimes it comes down to how much you know yourself and how much you KnowMS.

¤¤¤ Opinion ¤¤¤

January 2008 is National Blood Donor Month. Blood donation continues to be a hot topic with M.S. patients. Can we donate or are we deferred? Should we donate even if our blood is readily accepted? Kim Fabrizio explores the issue in To Give or Not to Give.

Life isn’t always easy, but despite being bruised and confused this past week, Kim let seduction sweep her away – to the point that she actually forgot about having M.S. for one full day!

¤¤¤ Life ¤¤¤

Courtney Carver is officially in training for the 100k "Ride the Vineyard" MS Bike Tour in May. When asked why she rides?

Courtney simply says, "Because I Can."
Things may be different tomorrow, but today, I can ride and so I will. When I have thought about exercise in the past, I always think..."I HAVE to work out tomorrow" (or I will get a big butt!) or "I NEED to work out tonight" (or I will be really grumpy or stressed out) but to keep things simple this time around in my new commitment to exercise, I will just do it because I CAN.
Courtney is determined to make no time for MS.

¤¤¤ Opinion ¤¤¤

In general, MS bloggers want to share their stories. They want to connect with other MSers who may have had similar experiences. However, what happens when Big Pharma tries to burnish a tainted reputation, creates "fake news/public affairs" infomercial, and does a little astroturfing online? For the answer, check out "'Sharing Miracles' brought to you by PhRMA" brought to you by Lisa Emrich.

¤¤¤ Inspiration ¤¤¤

Each week, O Sole Mio Sundays on Sunshine and Moonlight features the stories of others who let their Moonlight times inspire them to let the positive blossom from the negative. 'O Sole Mio' translates to 'My Sun' in Italian. So many patients with M.S. have made something positive come out of their diagnoses. Read the stories of others here and submit your own story for a future edition.

¤¤¤ Multiple Sclerosis ¤¤¤

The next Carnival of MS Bloggers will be hosted here on January 31, 2008. Submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 30, 2008.

Thanks for visiting and happy blogging in the new year.

Thank you.
Comments for this Post

Thursday, January 3, 2008

Carnival of MS Bloggers #1

Welcome to the new Carnival of MS Bloggers, Edition No.1

I'm excited about the many MS Bloggers who have responded to share their stories and invite you to visit their blogs.

So sit back, relax, curl up with your computer and a favorite beverage. Enjoy.

¤¤¤ Multiple Sclerosis ¤¤¤

Joan Wheeler presents her 13-year journey from initial neurological event to eventual diagnosis in My Multiple Sclerosis e-Book. This is her story (which I thoroughly enjoyed reading.)

Joan blogs at A Short in the Cord and reminds us that everyone with MS has very different experiences and thus has his own story to share.

¤¤¤ Opinion ¤¤¤

Writing at Self-injecting Chinese Hamsters since 2007, a newly-diagnosed MSer, simply known as -A, short for Anonymous, presents Why Baking Cookies is Not Going to Cut It.

Building on Susan Sontag's legacy in terms of analysis of illness, specifically "Illness as Metaphor," -A takes a brief, first look at MS and how it, like cancer for Sontag, has come to serve as a trope for various contemporary social "evils."

An Excerpt from Susan Sontag's Obituary
(via Los Angeles Times Dec 28, 2004)

In 1976, at 43, Sontag discovered she had advanced cancer in her breast, lymphatic system and leg. She was told she had a one-in-four chance to live five years. After undergoing a radical mastectomy and chemotherapy, she was pronounced free of the disease. "My first reaction was terror and grief. But it's not altogether a bad experience to know you're going to die. The first thing is not to feel sorry for yourself."
She learned as much as possible about the disease and later wrote "Illness as Metaphor," an influential essay condemning the abuse of tuberculosis and cancer as metaphors that transfer responsibility for sickness to the victims, who are made to believe they have brought suffering on themselves. Illness, she insisted, is fact, not fate. Years later, she would extend the argument in the book-length essay "AIDS and Its Metaphors."
¤¤¤ Life ¤¤¤

Victoria Plum, an ambulance technician from Berkshire, England (on this side of the big pond we might call her an EMT), presents Why can't I sleep??

Finding herself unable to sleep one night during her enforced time off the road due to a yet-to-be diagnosed medical problem, what does Victoria do?

Well, she does what many of us have done....she starts a blog.
Victoria shares her MS journey at the aptly named blog Victoria Plum - Technician!.

¤¤¤ Multiple Sclerosis ¤¤¤

Recently diagnosed with multiple sclerosis in November 2007, Kimberly Fabrizio is thankful to have had One Month Free of Hypochondria.

Kim blogs at Sunshine and Moonlight -- A Journey with Multiple Sclerosis and says, "Yes, I’m living in reality….Honest," and shares some ideas about Staying Positive without Mindless Optimism.

She also has discovered a new way to relate to her father, especially whenever she's, uh, like saying, "You know -- It's that....that....THING!"

¤¤¤ Life ¤¤¤

Although November 2007 was National Family Caregivers Month, we should take time to recognize the many things which our family members, friends, and caregivers do for us each and every month.

Mandy Crest blogging at MS Maze presents My Spouse, My Caregiver, a gentle testament to the many little things her husband does for her on a regular basis.

¤¤¤ Life ¤¤¤

Chris Tatevosian has gone beyond the blogworld and has written a book about his MS experience titled Life Interrupted, It's Not All about Me.

Chris shares his story regarding anger, frustration, rage, and marriage when a couple suffers the effects of multiple sclerosis.
No one should have to put up with that kind of behavior, especially your closest and most intimate friend, the person you love most in life. Yet this situation is prevalent among couples affected by MS. I have made my life an open book with the goal of helping others avoid making the same relationship destroying mistakes that I have me.
At his blog Defeating Illness, Chris primarily discusses issues surrounding his book.

¤¤¤ Multiple Sclerosis ¤¤¤

Richard Boughton reflects on the disease which is MS, as compared with other types of disease, in his post Blades of Grass found at non-idiotic people who happen to have MS.
Perhaps it is time to amble a bit more as we go through life, no matter what the weather. Goals are fine, achievements are dandy, but sometimes we can fail to appreciate the wonders of the process, the myriad sights and sounds, faces and places that are the fabric of our immersion in that which is our life. No matter what else it comes with, it comes only once—blades of grass one day, fuel for fire the next.
[Still] ... I'll choose MS.
Richard blogs at KEBENARAN - THE TRUTH.

¤¤¤ MS News ¤¤¤

Ann Sawyer and Judi Bachrach join blogging forces to discuss The MS Recovery Diet, a book which addresses the inflammatory effects of nutrition in diseases such as multiple sclerosis.

Ann provides answers to a reader's questions regarding the book on her blog, while Judi answers some questions regarding a vegetarian approach for her readers.

¤¤¤ Opinion ¤¤¤

As nutrition truly is important in maintaining a healthy body, Lisa Emrich at Brass and Ivory shares a recent experience she had after her rheumatologist suggested fighting systemic inflammation by fighting abdominal fat which produces cytokines (ie. TNF-s and Interleukin-1). The latest disease-modifying drugs used for rheumatoid arthritis suffers seeks to counteract the effects of these cytokines, but those of us with MS are prohibited from using these drugs due to neurological side-effects.

So in fighting abdominal fat, a natural approach would seem most logical. However, caution should be taken for those sufferers who seek the guidance of 'natural health' practitioners who may (or may not) have a larger agenda in play than your greatest health.

Lisa shares her experience with one local doctor In the Pursuit of Health & Wellness - Is Alternative Medicine Complementary?

¤¤¤ MS News ¤¤¤

Stuart Schlossman of Stu's Views and MS Related News invites readers to visit his blog and to subscribe to his weekly MS e-Newsletter which is presently received by over 4000 people globally.

Stu's blog is not the typical 'bloggers blog' but is an archived database of over 900 MS-related articles which give the viewer, the patient, and/or caregiver a place where they can learn more about Multiple Sclerosis.

¤¤¤ Multiple Sclerosis ¤¤¤

The next Carnival of MS Bloggers will be hosted here again on January 17, 2008. Submit a post from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 15, 2008.

As the carnival develops and participation increases, I hope to include more personal views and presentations on any number of topics and less quasi-commercial promotion.

Thanks for visiting and happy blogging in the new year.

Thank you.
Comments for this Post

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