Thursday, August 26, 2010

Carnival of MS Bloggers #70

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

On the Journey and Self-Identity

by Judy at Peace Be With You

My mind is open.
I will try anything once
if it shows promise.

an avenue for testing

In my eagerness
for taking roads less traveled,
I expand my world.

Don't Be the Patient 
by Christie of The Lesion Journals
Be the friend. Be the colleague.
Be the partner, lover, and best friend.
Be the artist. Be the writer.
Be the surfer, swimmer, and diver.
Be the gardener. Be the cyclist.
Be the horn player, conductor, and flutist.
Be the bingo player. Be the deep sea fisher.
Be the cousin, sister, and daughter.
Be the baker. Be the photographer.
Be the wine connoisseur, cheese monger, and chef.
Be the person other than just the “Multiple Sclerosis” patient.

by Judy at Peace Be With You

Met some friends today.
We talked about a book.
It was like old times.

I felt myself soar.
My walker sat on the side
ignored by us all.

I got to pretend.
Briefly my world expanded.
I was fully me.

by Lisa Emrich at Brass and Ivory

When I read about chronic illness in discussions of public health policy, I note the following information is shared and sited repeatedly.
Chronic diseases – such as heart disease, stroke, cancer, diabetes, and arthritis – are among the most common, costly, and preventable of all health problems in the U.S.  Chronic diseases are the leading cause of death and disability in the U.S.  Four modifiable health risk behaviors—lack of physical activity, poor nutrition, tobacco use, and excessive alcohol consumption—are responsible for much of the illness, suffering, and early death related to chronic diseases.
- Centers for Disease Control and Prevention (CDC)
I live with chronic disease but I'm not represented in the top five diseases.  It is assumed that people could prevent their chronic illnesses if only they led a healthier lifestyle.  But you don't develop multiple sclerosis or rheumatoid arthritis because you ate poorly, drank alcohol or were physically inactive.  (Smoking, however, has been shown in studies to increase the likelihood of developing MS.)

For next week's “Patients For A Moment” edition, Leslie asks the following question:
What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?
What would I want people to know?  That's a tough one because I don't often think that non-chronically ill people would want to know more about my illness, honestly.  Not unless they had a direct connection to me personally.

Who are the non-chronically ill?
 In 2005, 133 million Americans – almost 1 out of every 2 adults – had at least one chronic illness.2
Let me use my own my own family (and that of Rob's) as an example.  There are three adults aged 60-75 and five adults aged 34-41.  Of those eight adults, four live with chronic disease.  Myself and our parents.  Our siblings are "healthy."  (So we do represent 1 out of 2 adults living with at least one chronic illness.)

What would I want the healthy siblings to know?  Let me think (type) out loud.

I don't enjoy having these diseases.  In fact, I despise them.  But they are a part of me now, so I can't comfortably despise them too much.  I don't want to hate myself just because I have illnesses.

Notice I didn't say that I am ill.  I'm not "sick."  If I have a cold or bronchitis, then I am sick.  But MS and RA are not sicknesses, they are diseases which are constantly working within my body.  They are always active whether we know it or not.

There is the underlying fear of waking up one day and finding that one of the diseases has decided to attack and flare such that it takes away another little part of me or my abilities.  That fear can become oppressive and in the quiet of the day, I am afraid. 

How do I deal with that fear?

Sometimes I cry.  Sometimes I look to the people who have been more affected by these diseases and observe how wonderfully they live their lives.  That gives me inspiration that no matter what, I will be okay.  I have already adapted to changing circumstances, I will continue to adapt as necessary.

That's what humans do so well.  We adapt.  We are flexible creatures who do not need generations to adapt to new circumstances.  We don't have generations, we only have our own life to live.

One life to live.

That's what I would want the non-chronic illness people to know.  We only have this one time through life.  It isn't a straight journey, but has many twists and turns.  True for all of us, non-chronically ill or chronically ill.

Now I'm highly adaptable (I have no choice) but I can't do this alone.  I need your help and support.  I don't need to be pitied or ignored.  I don't need to be coddled or stifled.

I do need your love and support.  Treat me as you would like to be treated if you were in my situation.  I am just like you, but traveling a slightly different path.  I may be "diseased" but I am still me.

I am still me.

by Judy at Peace Be With You

The quiet courage
so many MSers show
just leaves me in awe.

People have no clue
how much sadness lies hidden
behind a bright smile.

This challenge is tough.
We all make the best of it.
Sometimes it's too much.

This concludes the 70th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 9, 2010. 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, September 7, 2010.

Thank you.

Comments for this post.


  1. Oh my dears, all of what you have written here shines with the indomitable spirits you are. Thank you for your inspiring words of wisdom.

  2. Very moving and just how I feel. You have a lovely blog. Judy's poems hit the spot.

  3. Lisa, thank you for choosing my poems and for displaying them alongside some awesome posts. I already told you I thought your I Am Still Me was brilliant. Now I get to become acquainted with Christie and Bette whom I had not known. A real privilege. And thank you, Laura and Bette for your kind words about my poems.

  4. Thanks so much for including "Don't Be the Patient" in Carnival #70. I love the other poems from Judy (especially "Peace Be With You") and, of course, your writings in "I Am Still Me". Have a wonderful weekend ladies!


  5. Wonderful and powerful, thank you!