Monday, March 26, 2012

Katniss, Panem and Me

I'm sure you're aware of the latest craze to take the country by storm.
The Hunger Games.
The movie, based on the book, made about a ga-zillion dollars over the weekend, my $12.00 included. I happily handed it over after months of anticipation.

I enjoyed the book and I enjoyed the movie.
 (Despite the brutal premise.)
Yet while watching the movie, I had a strange moment of reckoning*.

While Katniss was being dragged up to the stage to face her destiny,
 I momentarily felt just like her.
I am a prisoner in a war that I didn't ask for.

Then I realized, oddly enough that I am Panem and The Capitol too.

My body, that five months ago decided to quit functioning properly, is Panem.
It's where I literally live, no matter how disfunctional it may be.

My MS is The Capitol.
It chose me.
I have no choice.
It governs unjustly.
I try to survive.
It changes the rules on a whim.
I try to adjust.
It strips away my dignity.
I persevere.
It tries to break me.
I resist.

Effie Trinkett, spokesmouth for The Capitol is fond of saying,
"Happy Hunger Games! And may the odds be ever in your favor!"

My wish to you is the same,
 May the odds be ever in your favor, May you beat The Capitol at their own game.
Whatever your Capitol may be.

*Yah, yah, I know it's all fiction. Work with me here.

I selected this post to be featured on my blog’s page at Multiple Sclerosis Blogs.

Wednesday, March 21, 2012

my marbles

Sometimes I feel like I'm losing my mind.
Yesterday for example, I picked my teenage daughter up from her job 30 minutes late.
 In desperation, she started walking home and then I drove right by her.
She is mildly amused by my craziness.

Then I came home and realized a deadline for a Cub Scout activity was upon me. I spent a good hour frantically getting the things ready, wondering "why did I wait until the very last minute to do this!"
My husband kindly informed me that Cub Scouts is tomorrow.

I can often be found muttering to myself, "I am losing my marbles."
My three year old sweetly asked me, "Did you find your marbles mama?"

I have to wonder, is this old age? I'm only 40. 
 Is this what they refer to as MS brain fog
 Or am I just literally losing my marbles?

I suppose there is no way to truly know, but if you happen to find my marbles, could you please return them!?

(My daughter last summer.)

Friday, March 16, 2012

confession and giggles

I don't really like to exercise.
I am NOT one of those people who have "run a marathon" on my bucket list.
The only running I do, is to the fridge to refill my ice cream bowl.

Yet, with MS, I need to be exercising.

I know this, but it's still a struggle to motivate myself.
Sometimes I'll have a really great motivated week and do my Yoga and Treadmill daily.
Then for no explicable reason (other than laziness), the next week I will do NOTHING.


I came across a web site lately that is really helpful in motivating me to get off my duff.
This site has all kinds of great MS related articles and advice.
Dave Bexfield (the founder of ActiveMSers) is hard core active and features MSers who ski, hike, do triathlons, etc.

As I said, I'm not aspiring for any of that craziness,
but I would like to feel better physically and mentally.
And, I would like to say I walked on my treadmill for two whole weeks in a row! also sends out a e-newsletter chock full of great tips.
Yesterdays newsletter for example, talked about Kegels.
What? You don't know what Kegels are?

I've had seven babies so I definitely know what Kegels are,
but the word Kegels makes me giggle.
Although truthfully, the definition of Kegels just isn't exciting enough to justify my giggles.
So I decided to make up my own definitions:

Kegels: Irish snack food. As in, "Aye, wee laddie, pass me a 'nother Kegel to go with my Pint and Kiss the Blarney stone while you're at it!"

Kegels: Hair conditioner. TV Commercial featuring unbelievably beautiful model with unbelievably massive mane of hair, "Ladies is your hair limp and lackluster? Dry and damaged? Try Kegels for ultimate protection and hair satisfaction"

Kegels: "Must have" toy of the holiday season. Scene: Harried mother and father who have visited every Toys R Us in the tri-state area. Mom, "Honey if we can't find that Kegel, little Suzy Schnukums will be devastated!" Dad (involuntarily shuddering), "I can almost hear the screeching now!" Mom, "We have GOT to find that Kegel! I don't care what it takes, we will not deny Suzy Schnukums her Kegel happiness!"

If you're interested in the real definition of Kegels,
it can be found here.

Now go do your Kegles!
(giggle, giggle)

Thursday, March 15, 2012


I feel like I have so much to be happy about.

I have a wonderful, supportive husband, 6 (yes, SIX!) amazing and funny kids, a home and good friends.  There are tulips peaking out of the dirt in my yard, my three year old has adorably curly hair, I can eat chocolate whenever I want, I wore my blue converse today, I spent a great evening with awesome friends last night, my favorite jeans don't have a hole in them yet.  You get the idea.

Yet, sometimes, lately.....

I struggle.

MS can do that to you, I know.

Today I decided to start a gratitude journal.
Writing things down is therapeutic for me.
 I enjoy the process of putting my scattered thoughts
 into coherent (or sometimes not) sentences.

I think it will help me each day to remember my blessings.
And on days I am struggling, I will look back at what I've written and remember.

We all need to remember and recognize the good things in our lives.

For today:
I am thankful for beautiful blue skies and the warm sun.

What are you thankful for?

Wednesday, March 14, 2012


I am new at this game. It’s been five months, one hundred and fifty one days to be exact, since I experienced my first MS symptom

To those who have struggled with MS for many years, five months may seem trivial, but to me, as a so-called beginner, it’s been a long five months. I feel like I’m just beginning to understand the changes in my life, I am just beginning to learn how to deal with these changes.  In other words I feel like a MS preschooler.

Do you remember preschool? For most, it’s a happy time of life. MS and preschool are surprisingly similar!

ABCopaxone.  Preschoolers learn their ABC’s.  The first thing I did was learn about was the various drugs available for MS.  I chose Copaxone and inject myself daily. Did this scare me to death at first?  Yes, (I may have cried) but now that I’m experienced, it’s no big deal.

Nap Time. Do you remember rolling out a mat for your preschool nap?  Turns out, a daily nap works great for MS too! At least that’s the excuse I keep giving myself.

Recess-it’s not just for kids! Possibly the best part of preschool was recess.  I have very few memories of preschool, but I do remember sliding down a slide at recess time. In MS, “recess” is simple:  Exercise daily!  I walk on my treadmill when possible. Something as simple as stretching also helps me feel better.  I have a beginner’s Yoga App on my iPad that I’m starting to love too. Do what works for you.

Arts & Crafts.  Every month Copaxone shows up on my doorstep, packed in ice, in a Styrofoam cooler.  The coolers are starting to pile up in our garage.  My children happily used two of these coolers to make Valentine’s Day Mailboxes to take to their school Valentines parties. What other creative ways can you think of to use those coolers?

Dress Ups.  Did you have dress ups in Preschool? A box of costumes that facilitated becoming someone or something else?  These days I feel like I am constantly wearing a costume.  My first MS symptom was numbness in my right hand.  After a few weeks, the numbness escalated into outright pain.  Not being able to use my hand interfered with my ability to blow dry and straight iron my hair.  So I gave up the hair battle and have gone naturally curly, which is much, much easier.  Do I like my curly hair? I’m trying to.  I still feel like it’s not really me (ironically), hence the “costume,” but I’m trying my best to adjust.

Story Time.  Where do we get our MS stories?  From the Internet of course! There are many great online resources for MS.  In the early days soon after my diagnosis, I spent time reading all kinds of information online.  After a while though, it just got plain depressing.  The uncertainties of MS can be scary for newbies, but it is important to be informed of all the good, the bad and the ugly. Knowledge brings power!

Field Trips.  We get to take field trips too!  Trips to your doctor’s office can be fun!  Ok, maybe not fun, but at least helpful.  And maybe if you’re lucky, you’ll get a sucker.

Play/Game time.  Are you exercising your brain?  I’d never played a Sudoku game in my life till a couple of months ago.  Try it, your brain will thank you!

Wash your Hands. We learned in preschool how to wash our hands.  This is more important than ever, keep those germs away, keep yourself healthy.  Always remember to wash your hands before injections.

Graduation! I’m going to go out on a ledge here and assume you graduated from preschool with flying colors. I did too!  This gives me hope that sooner or later, I will be a graduate of MS preschool.  Wish me luck.