Carnival of MS Bloggers #5

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

Enjoy!!

Merelyme discusses her ballerina toes - or maybe it was she who said that she had "No Use For Toes."

"Okay so I will never be a ballerina. Mostly my toes get used for lifting me up so I can see better in crowds as I am on the short side. Five foot two, eyes of blue, koochie koochie koo. Other than that, my toes don't serve much purpose other than peeking out from summer sandals."

But the toes can be useful in revealing information regarding neurological damage. The Babinski's sign, determined by a test which involves drawing a semi-sharp object along the bottom of the foot, is present if the big toe moves upwards and/or the toes fan out. The normal response in adults and children is for the toes to reflex downwards.

"So what was I saying? Oh yes...I will never be a ballerina. This was confirmed by my neurologist, who after performing real doctor tests in her office chided, "Well you are no ballerina are ya?" And you know...I am okay with that. My toes are just fine about hanging out in sandals or comfortable sneakers. They have had their day in the sun and could wish for little more. Perhaps one day I will break down and treat them to a pedicure. I think they deserve it, don't you?"

Announcing the birth of a brand new MS Blog, Me Myself and MS, coming to us from the UK.

Emma shares the history of her symptoms from optic neuritis in 2000 (just like me), the diagnosis in 2006 after her 1st relapse, and subsequent relapses #2, #3, and currently #4.

Let's all welcome Emma to the MS Blogger Club.

Speaking of MS blogs, Carolyne's MS Odyssey announces a new look for the MS Means website... The site is newer, slicker - with a black background and the ability to change text size. While MS Means has been undergoing major changes, so has Carolyne as she adjusts to a new, more restricted lifestyle due to MS fatigue.

"Well, I have always believed that life is not about finding yourself, but about creating yourself. I am creating a new “me” as I go through this process - but I am well assured that the basics of who I am are still intact."

For Privacy’s Sake: Let’s Be Careful Out There! - MS Maze

"I can’t even begin to guess the number of health-related blogs which exist. Most are written by and for people who have been diagnosed with a chronic condition. The authors are looking to lend their support as well as to receive it. At the risk of sounding our own horn, we are a very well-intentioned group of people.
"In our effort to enlighten and entertain, we often share very personal information. We tell of our diagnosis, our prescribed medications, our trials and tribulations. We spill out our heart and soul. At the push of a button, this information is available for all the world to see and, once set free on the world-wide web, can never be taken back."

Mandy has some wonderful thoughts about knowing where to draw the line. So let’s do be careful out there!

Sharing her inspiration, Diane tells of her experiences, past and present, in search of ways to connect with others who live with chronic illness in "Strong Together As One, Let Us Fly."

"The idea for putting together a list of 100 chronic illnesses came as I was watching Richard M. Cohen, author of "Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” speaking about the next book he was working on, during a live appearance on the Don Imus TV show. Mr. Cohen spoke of the horrible job the medical community and our country does of understanding the lives of those who live with chronic illness. Mr. Cohen has MS, and I open his book often for inspiration. I couldn’t wait to read his next book as the topic was something I had been learning to grapple with for most of my adult life."

Inspired by BrainCheese's 100+ MS Blogroll, Diane set out on a quest to find 100 blogs written by those who live with chronic illness. What were the requirements? The blog had to be personal, no sales or medical information types, no agendas involving religion or societies, a diversity of bloggers and a spirit of life beyond an illness box was a must. Diane's list is a wonderful resource for us all.

"And on that day when we cannot walk and words can come no more, we still stand together. When we no longer break bread with one another, still we will sit at the same table. Our hearts will stay strong. In thought and with spirit, we will fly. Our own compasses point the way, and the winds forever will be at our backs.”

- Richard M. Cohen, author of “Strong at the Broken Places, Voices of Illness, a Chorus of Hope"

In conclusion - and "In Honor of the Academy Awards - Oscar Night for SiCKO" - I share my 'almost famous' story with you. Michael Moore and Meghan O'Hara may not have won the academy award but I certainly have gained much from my ever-so-brief experience with them.

Remember, the next Carnival of MS Bloggers will be hosted here on March 13, 2008. Please remember to 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, March 11, 2008.

Thank you.
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Carnival of MS Bloggers #4 - Valentine's Special

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


Today is Valentine's Day -

A day of flowers and hearts,

chocolate and cupids,

gushy proclamations and

tender whispers of devotion.

In other words -

A Day of Love. Love for your sweetie and love of yourself.

So what's the first thing that comes to mind when you think of romance?

Really? Are you sure?

See, I thought you'd say sex. Hmmm. I'm usually a pretty good mindreader.

In honor of Valentine's Day, Shauna starts off the week discussing a couple of sensitive subjects - Penis, Vagina, and Breasts - in addition to SEX. But what does a discussion of sex and sensations have to do with MS?

"One of the first sensations we have as babies, is the sensation of touch. In fact, the earliest sense to develop in the fetus is the sense of touch. Human babies, and other primates have been observed to have enormous difficulty surviving if they do not have this sense. As well, if babies are not touched and held, they have developmental difficulties.Touch is the most basic part of a sexual relationship. We don't usually just jump into sex without some other physical contact. Touching, exploring, caressing; these are all part of an introduction to sex.

But what if touch hurts you?

For more, you simply must go read Shauna's post. It may not be pornographic, but it is certainly titillating. (Side note: Shauna claims that discussing sex is a sure-fire to increase blog traffic. I guess we'll see if she's on to something.)


Sex isn't the only subject appropriate for Valentine's - the love of friends and family is often irreplaceable.

Diagnosed the week before Thanksgiving in 2007, Daniel discovered just how "one man's struggle became a rallying point for dozens of others."

"I knew I had to tell people, but I didn't know how to do it. How do you tell people that you have known for your entire life that you have a life-long illness with such a stigma attached to it? How will they react?"

"My friends and family demonstrated shock, fear, sadness, love, perseverance, compassion, disbelief and just about any other feeling that one can experience upon hearing such news."

"One of the most difficult times in my life was met with so much love and an outpouring of emotion that it was incredibly overwhelming."

Daniel chose to tell others about his MS early on and received wonderful emotional support from friends and family. But how do you decide to share your diagnosis with others?

There comes a time when each person contemplates the big questions - "Who do you tell, when do you tell, why do you tell others you have MS?" - as discussed recently by Lisa.



A common symptom of MS which the books don't often discuss is GUILT. What do you do when faced with "MS and Broken Vows" as Mandy shares.

I vowed once again that it wouldn’t happen. Once again I broke those vows.

I vowed NOT to feel guilt at having MS, or for relapsing.

I vowed NOT to apologize to my husband for my MS.

I vowed NOT to speak of MS every day.

Five years into MS and I still cannot keep those vows.

A loving message for Valentine's Day from Mandy to her husband Jake.
More at MSMaze...


Multiple sclerosis becomes a lifelong companion - one which is always there for you even after you've both lost touch. But can we really ever forget about MS?

Searching for a solution to nighttime bladder problems, Kim may have found a practical solution - ear plugs. Curious? read more...


On this Valentine's Day when your partner snuggles up close and wants to know more about how you feel, or what exactly MS feels like, start with the question - can you imagine? Here's one of Joan's excellent examples.

"Have you ever had your leg fall asleep? Then you are familiar with that 'pins and needles' feeling. It usually passes once circulation is restored to the leg. Now imagine having that 'pins and needles' feeling in both legs constantly."

Continuing the sharing theme, Callie shares her list of annoying MS damages. Why an itemized list you ask? Just because she felt like it. Maybe you will see a part of yourself in her descriptions and know that you are not alone in this journey.


Choosing to view multiple sclerosis and his life experiences - no matter how devastating - as a gift, Chris discusses differences between a vocation and an occupation. Chris is the author of "Life Interrupted-It’s Not All About Me."

"By sharing my actual experiences with chronic illness and divorce I hope to provide others with the knowledge, awareness and understanding intended to help them avoid making the same relationship-destroying mistakes that I did by dealing more positively with the emotional and physical stresses put on a relationship when life is interrupted by chronic illness or disability."

Finally, in response to our recent discussions of love, depression, and loneliness, one reader shares valuable advice on choosing a Therapy Doc, or is that Dodo Bird? Thanks Doc.


The next Carnival of MS Bloggers will be hosted here on February 28, 2008. Please remember to 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 26, 2008.

Thank you.
Comments for this Post