Thursday, October 27, 2011

Carnival of MS Bloggers #100

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

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “ I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

by Mary K. Mennenga

To see the person
Who isn't willing to quit or given up
On living life, hope and love
Life is about
Making the most out of what I've got to work with
It's not about what I can no longer do
Instead it's learning new ways of working within the limitations
Living life has brought to all of us
Pride is a force that will need to be dealt with
It's one of the things that can defeat anyone
Remember I'm are still in control of my choices
Will I make mistakes of course that's how most learning gets done!
All I ask is your understanding that
If the reason you're helping is because you think you have to?
That kind of support feels more like pity to me
Instead of being something you want to do with me

Honestly pity is just another form of guilt
That has nothing to do with me

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.


need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."

This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 2011. 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, November 8, 2011.

Thank you.


  1. Thank you for creating the Carnival of MS Bloggers and all the work you have contributed to the MS community.

    I am honored to be posted and I enjoy learning about other bloggers. It makes me happy to hear more voices from the MS community talking about understanding, dealing with and accepting this change in life.

    Thank you for offering such a strong deliverance of the MS people.

  2. A wonderful centennial issue. Thanks.

  3. I love your blog. I write blogs about life with MS for a Danish website

    I left a link to your blog on my English blog

    Have a great weekend. Mette:)

  4. Thank each of you!! The Carnival wouldn't have grown so much without the community's participation. It's hard to believe that we will be completing the 4th year this December. Whoohoo!