It’s not often I cite Biblical passages, perhaps because I feel blasphemous because I don’t read the Good Book nearly enough.  A passage (Mark 6: 30-32) came through in an email the other day.  It is a passage about Jesus looking for and seeking solitude.  The email also contained the following information that spoke to me as I reflect on my new normal, my new life as a person with M.S.

(a) Make a list of the things that only you can do, then delegate the rest or let them go;

(b) Learn to take small steps and celebrate small accomplishments;

(c) Don’t allow the stuff that’s still undone, to undo you;

(d) Strive for balance; don’t become addicted to what you enjoy

(e) Don’t compare yourself with others; work at your own pace;

(f) Take time for the people who matter, otherwise you’ll lose them.

All good advice and information.  Definitely a daily reminder for me as I try to relinquish control in my new world as a person with M.S.

If this little girl only had red hair….

ScienceDaily (July 1, 200 — Animal studies by University of Michigan scientists suggest that people who experience the same clinical signs of multiple sclerosis (MS) may have different forms of the disease that require different kinds of treatment.

Read this interesting article!

Best Treatment For Multiple Sclerosis May Depend On Disease Subtype

I’m stepping up on my pulpit, or soapbox if you will. Let’s talk insurance!

I remember some of my first ‘real’ jobs out of college.  It was all about the money.  Health insurance and life insurance were of no interest to me.  If I received them as part of my job, great.  If not, no worries.  If given the choice of a higher salary but no insurance vs. a lower salary but a great benefits plan, as a young adult I always opted for the higher salary.  I was lucky.  Until my late 20s I didn’t have any major medical problems and by the time the problems surfaced I had a good health insurance plan.

Life insurance was of no interest until I became married and realized the impact my death would have on the hubby and my step-kids.  I didn’t have a clue about disability insurance until I was diagnosed with M.S.  I literally had to come back to work to ask our H.R. person if we even had disability insurance and what it all meant.  Luckily, I have a great long-term disability insurance plan here at work.  Who knew?!

We’ve begun a series of renewal meetings for various insurance plans at work.  In addition to my health insurance, a company provided life insurance plan that I opted to increase years ago, and the long-term disability plan, we also have access to optional Aflac policies at group plan rates.  I have an ‘extra’ life insurance policy on myself through Aflac and also have one on the hubby.  I entered the meeting room to renew.

The table was adorned with artful and colorful brochures describing other products and services available to me – or at least I thought they’d be available.  I picked up the brochure describing the insurance plan to cover a single, major hospital event.  “Ha! Wish I would have bought that one last year, Linda,” I said to my Aflac rep.  She asked why and I brought her up to date.  “Ugh. M.S.”  Boy – doesn’t that sum it all up into a nice little package for us? “Ugh. M.S.”

I looked at the brochure explaining the plan to insure against short term disability.  I was intrigued because of the heinous mess one has to go through just to utilize long term disability insurance plans, or worse S.S.D.I.  She fired up her laptop, typed a bunch of info and said, “Ugh. M.S.”  That translates into: Now that you have been diagnosed with M.S., Kim, you don’t qualify for that insurance. Nor do I qualify for the major hospital event plan.  Or a bunch of others.  Ironically, now that I’m 10 years cancer-free I would qualify for the cancer policy although at high premium rates.  M.S. is one of those diseases that never go away though.  I’m branded for life.  In fact, Linda counseled me to do whatever is necessary not to lose the Aflac life insurance policy I have (or any others).   They can’t be taken away from me, but if I lose them or cancel them and want other coverage it will be either hard to find or too expensive to manage.   “It’s a good thing you already had our life insurance coverage prior to the diagnosis,” she said. (At least I did something right)!

This is one of those life lessons I wish I could have learned without experiencing it first hand.  Thank God I have life insurance.  Thank God even more for health and disability insurance.  I gave some advice to a gal the other day.  She ‘thinks’ she may have M.S.  I’ve written about this topic before here in the Sunshine and readers know how strongly I feel about folks who ask, “Could I have M.S.?”  The gal has scheduled an MRI test and is scared what the results will report to her.  I told her to cancel the test or at least to hold off for a few weeks.   Yes, you heard me right.  Cancel the test or at least delay it.

I’m not trying to play doctor here.  Obviously I told her if she’s experiencing extreme and unmanageable symptoms to get to the E.R. right away.  But she’s been having mild symptoms, undiagnosed for years now.  She’s just now reached the point of thinking an MRI is in order.  I’m on the side of those folks who believe that treating M.S. with D.M.D.’s as soon as possible will impact a patient’s prognosis.  I certainly don’t want her health to suffer, but I wanted to provide her with info on long term issues that she will face long after a few hours in an M.R.I. machine and a diagnosis of M.S. (or really any other major life-changing disease).

I then told her to get herself some insurance.  She already has health benefits, but hasn’t opted for life, or long or short term disability insurance.  I told her to buy up Aflac in every way possible, with every policy available to her.  I suggested she look at policy limitations and time requirements.  For example, some policies won’t cover a diagnosis of M.S. if the diagnosis comes within three, six, or twelve months of the first premium.  I told her to do her research and try to at least obtain some sort of insurance. Then, once that is done, I told her to reschedule her MRI.

Once she is diagnosed, IF she is diagnosed, her life according to the rules of the insurance world will change forever. There is no going back.  In one year alone more than 13,000 of the 400,000 Americans with M.S. applied for disability insurance benefits through the Social Security Administration; M.S. applications are higher than all other disability impairments combined.  For this reason, persons with M.S. are going to be hard pressed to find affordable insurance after they are diagnosed.  If she’s fortunate to have a clean bill of health, she can always cancel the various policies. 

Looking back with hindsight I certainly wish I would have insured my future much better than pre-M.S. diagnosis.

By Contributing Writer Needles ’n Pens

needlesandpens@comcast.net

Long, long ago, in that Once Upon a Time Place (the cool tile floor of the public library children’s room) I read every fairy tale anthology that those old shelves held.  I grew up believing the dream, that if I was good, I’d come out on the right side of whatever perils life offered.  The evil dragons would be slain, the prince and I would marry, and we’d live happily ever after in a beautiful castle.

I was good. And I and my prince did marry.  For a long while we lived in a cottage in the woods. We gradually winterized it, heated it with wood stoves, shoveled the paths each winter, and planted flowers each spring. We raised two children there, but knew that, in time, the hillside setting would defeat us in old age.  We looked around carefully. And we found our castle. 

 It’s a beautiful old house close to the center of town, within walking distance of everything we knew we’d want to walk to one day.  The library, the grocery, the bank, the coffee shop, a pharmacy, antique shops, the public beach, the school fields … all are close by.  Images of a peaceful retirement now drift through our dreams … not so far away. 

This old house deserves to be cherished and taken care of.  It is a wonderful house to host friends and family at holiday parties. But my prince and I both work full time, determined to pay off the mortgage in time to retire.  We both continue to be very, very good, and we both continue to work very, very hard. There isn’t a lot of time in our lives for scrubbing floors, washing windows, dusting bookshelves (which, yes, are still filled with anthologies of fairy tales, among other content collections). We suspect that at many times in this house’s history, there was a full time homemaker with a helper or two in residence, and that this house no doubt shone under that care. 

The Prince and I both struggle with waning energy after full work weeks.  MS and his evil accomplice, Fatigue` are limiting my efforts in “tidying” things up.  I told my prince that in my dreams, I wake up to birds singing and the fresh aroma of coffee. I still believe in the happily ever after.  We’re closing in on the retirement date.  My prince, kind as he is, has bought me a new, delayed-start coffee pot, and so that dream has now come true.  The birds chirping beyond my window give the illusion of a lovely domestic order. But the heavy-duty cleaning is still unaddressed.  Poor house. I’m sure in its past it was dealt better.

Or, was it in fact maintained by Sprites?  Did the Shoemaker Elves pop in to help the residents survive economically, freeing their time for more domesticated tasks?  Did the good fairies Flora, Fauna, and Meriwether treasure the flowers and gardens for the residents? Did Cinderella’s birds and mice help with the laundry? Did the Sorcerer’s Apprentice finally learn to manage that magical broom to sweep away the cobwebs? Did a magical feather duster gently clear away the dust bunnies? Did Rumplestiltskin spin gold to help the residents purchase more fuel to warm the house?

I still have this image of all that we will do, once retired and finally at home in our castle. Perhaps one day I’ll learn the magic of Rumplestiltskin and spin simple thoughts into gossamer wishes that I can peddle to book sellers, and with the rewards entice magically-skilled house keepers into our castle. Maybe Tinkerbell will come and spread her fairy dust about, and it will neutralize all the non-fairy dust that lies upon my waiting books. For now, though, we’ll ask forgiveness of this old house, and just do what we can despite MS and Fatigue`.  

Is there a book out there that I’ve missed – one that has the magical charm to deal with housework? If only Mary Poppins could drop in on a breeze … she would be so proud of me: I take my medicine every day (though not with a spoonful of sugar … the Dish ran away with the Spoon) I’m sure she would help with the housekeeping chores. Is there a special “once upon a time” that works best with chores? Summer is just ahead of me – and as a teacher I always have the illusion that I’ll get so many things done in the summer, while my classroom is closed.  But then Heat and Humidity arrive uninvited, and take up residence with MS and his evil accomplice Fatigue` … they are the houseguests that, as Mark Twain once wrote, are like fish in a bucket: after a few days, they stink!  Wishing them away hasn’t worked. No one has come up with a magical charm to slay them, yet. But I still believe in the happily ever after. The Prince and I have patience. And the old house is patient with us. If MS, Fatigue`, Heat and Humidity were forever done away with, I’m sure Beauty and her Prince’s magical staff, once sent to slumber by MS and the evil accomplice Fatigue`, would then be re-energized, and the chores would be successfully completed.

Perhaps somewhere in a cottage in the woods someone is still working on that fairy tale’s ending. Perhaps that’s where the Fairy Godmothers are, helping the tale to evolve.  I’m sure they’re busy, wherever they are. I wish they’d come visi

I was home from the office last Friday and was able to watch Oprah for the first time in ages.  It was as if I was meant to see this particular episode: Living the Law of Attraction.  No, this isn’t “attraction” in the sense that likely comes to top of mind.  Acclaimed author Louise Hay is considered the mother of positive thinking. She was on Oprah to have the conversation about the L of A. “The law of attraction is that our thinking creates and brings to us whatever we think about,” she says. “It’s as though every time we think a thought, every time we speak a word, the universe is listening and responding to us.” (Hmmm…so if we think about negative things and live in negative environments, the universe will create and bring negativity into our lives.  So conversely it’s only natural to believe that if we think about positive things, if we live positive lives, the universe will create and bring lots of happiness and good fortune to us).

It’s all about positive thinking.  It’s easy to be positive when things are going well in life.  It’s much more difficult when things aren’t going in our favor.  Ironically, it’s during these tough times that we need positivity the most.

Cheryl Richardson, an acclaimed author and life coach talked about how she gets through the dark times in her life.  She said that she refers to a specific devotion when things get out of hand: The World in Conspiring in My Favor.  That devotion reached out and grabbed my heart and my soul.

I often wonder why I find it easy to be positive.  It’s not as if I truly try to be positive, to smile 24/7, it just comes naturally, and it always has – even as a child.  It came naturally even when a teenage friend committed suicide, when faced with cancer, when faced with financial crises, when faced with a life of M.S.  I know that some people still believe my ability to find the positive in having M.S. is unnatural, or even fake.  A co-worker recently told me I was masking the news and impact of finding out I have three additional lesions on my brain well.  I replied in the affirmative, but later in retrospect, I recognized I really wasn’t masking anything at all.  Masking something means hiding something.  Hiding means denial.  I was “OK” with the news of the progression of my disease. Sure, I didn’t want more lesions to grow on my brain, but I also didn’t fold up into a ball when the news hit.  In fact, the news made me more positive.  It made me realize I had to fight harder, to work harder at changing my life and my destiny. 

As I think about the Law of Attraction, it reinforces so much about what I believe about life.  It’s about dreaming big.  It’s about seeing what you want to achieve and being able to get there because you have a path and a goal. It’s going with your gut.  Embracing change.  Choosing happiness.  Closing the door on negativity.  I’m not always good at these things; in fact lately I’ve had to work darn hard at closing that door.  I’ve also decided that when it gets too hard to close the door on negativity on a daily basis, it’s time to move away from whatever is causing the negativity.  It’s why I believe negative things come to negative people and why I wholeheartedly believe that amazing things come to positive people; big things come to people who give back; it’s the self-fulfilling prophecy at its finest.  Lately some of the things I’ve been working towards have fallen through my fingers.  I truly believe it’s because I’ve let myself succumb to the negativity surrounding me just begging to be let in.  Some great things are teetering right on the edge for me.  I’ve re- committed to surrounding myself with positive energy so things teeter in the right direction.  I believe I needed to hear the messages on Oprah to push me – a little more forcefully – back in the right direction.

I’m a huge goal-setter, but I’ve never truly written down all of my aspirations or put pictures to them.  Sure, I have a bucket list and I know some of the things I want to achieve in my life, but I’ve never captured all those dreams visually, concretely.  This episode of Oprah has inspired me to create a Vision Board, a great way to visualize the positive things you want to bring into your life.  Additionally, an individual (Psychologist Gay Hendricks) talked about a client who was extremely depressed, clinically depressed.  Hendricks spoke to his patient and asked him if there was anything that happened during the day where he could have stepped in to make a change, to make a difference.  The patient had walked outside the door of a neighbor who was unable to get out and about.  Mail and garbage had piled up into a mess outside the door.  Hendricks suggested his patient do something about the mess.  Minutes later the patient was glowing inwardly after helping his neighbor without being asked and he made it through his stage of depression that day.  Doing something helpful for another reaped a positive reward for the depressed individual.  In my mind I related to my day as Skee Ball Queen, where I guess I was living the Law of Attraction without knowing what it was called.

Now that I know what the Law is, and have some tips on how to remain positive even in the darkest of times, I feel as if I have one more tool in my “how to get through life with M.S.” toolbox.

Every little girl has her fantasies.  When I was young, I was a Happy Days addict.  I’d rush home from school, whip through my homework, grab my snack, turn the knob on the television, and at 4:30 PM, it was time for me and Fonzie.  No one else existed in the world. My favorite episodes were ones where Roz Kelly appeared in her acclaimed role as Pinky Tuscadero.  She was a feisty, spirited and proud character, who could be described as a female version of Fonzie in terms of personality. She was an expert motorcycle driver.  And Fonzie loved her! She was one of my childhood role models.  I learned to chew gum like Pinky.  I developed a love for motorcycles, just like Pinky. When her cousin Leather appeared on the show I wanted to have Pinky’s back and boot the wannabe off the set and out of the storyline. Oh, and yes, she was a redhead, too.  Minor requirement for any young redhead’s role model.

When I wasn’t trying to assimilate the traits and characteristics of Pinky, I was dreaming of being one of the Pink Ladies from the movie Grease.  Ironically, the character “Roz” was my favorite, despite being a brunette.  I was only ten-years-old when the movie debuted and within moments I learned every line of the story, every word of every song. I performed in the mirror, singing into a brush handle, to the horror of my parents who already thought I was a drama queen.  My gum chewing skills improved.  I was born to hand jive, baby.  The Pink Ladies taught me how to flirt, to be provocative, and to challenge authority – I know, all great qualities for a pre-teen. 

All throughout my life I’ve continued to love Grease.  It was the first Broadway show I exposed the hubby to in the Big Apple.  The soundtrack is all that the hubby will play on those long car rides back to our country home after a libation-filled night with our friends in the city – he needs something to keep me awake so he doesn’t have to carry me into the house.  It’s the only time he allows me to put my feet up on the dashboard so I can toe tap to “Summer Lovin” or “Beauty School Drop-out.” 

So, last week when we honored and thanked nearly 200 of our volunteers with their annual party, I jumped at a chance to make one of my dreams come true.  For just one night, just three hours, I became a Pink Lady.  The party was set in a 1950’s theme, all of us complete in costumes to entertain all those great folks who donate their time to our public broadcasting station.  I would never claim to be the real Pinky, so we modified her name a little for my use.  We played the movie on the big screen in our Learning Center which was transformed into a 50’s diner.  I sang the movie’s key songs at the top of my lungs, flirted with a few boys (OK, so the fellas were closer to 70 or 80, but who cares), challenged a little authority (and then quickly ran over to those whose authority I challenged to let them know I was just playing the part) and ran my hand seductively along our motorcycle’s body when I pulled into the garage after the party. 

I stayed dressed in my costume, complete with jacket, scarf on my hip, rolled up jeans, and bubble gum so the hubby could see my transformation when I arrived home.  “Oh my God, you’re a Pink Lady! You’re really a Pink Lady,” he said when I walked in the door.  With my hand on my hip, I replied, “Tell me about it…Stud!” (Those not familiar with the movie, give up, you won’t get the joke).

Lesson of the day: Find a way to make even your silliest of dreams come true!

Most Sundays, I devote my blog to the stories of others who let their Moonlight times inspire them to let the positive blossom from the negative. Today’s story is about one of my new friends – Becky Newman.  Becky is a new graduate of GED for Me!, a program I created and the only completely online GED preparation program in the state of Pennsylvania. The following article was provided by WQLN Creative Services Director Tom New and will appear in the upcoming edition of Lake Erie Lifestyle Magazine.
 
Ask Becky Newman about her day and she’ll tell you, “It’s fantastic.” She’ll talk about the progress she’s made developing a new chapter for the Autism Society in Northeast Ohio. She’ll tell you about her three sons, her husband, and her very large extended family. To say that Becky is a ray of sunshine is to shortchange her—Becky is a supernova.

Nothing comes easy for Becky. She suffers from pseudotumor cerebri, a condition very much like water on the brain. She lives in constant pain. She can’t sit or stand for any length of time, but it doesn’t stop her. She still attends all of her son’s sporting events. When the folding chair gets too uncomfortable she moves to the sideline and back to the chair again when that becomes unbearable. Becky is also epileptic.

Before her pseudotumor cerebri diagnosis, Becky was a nurse’s aid. Care giving is in her DNA. When her oldest son was identified as having ADHD and his school wasn’t providing an adequate educational environment, Becky took him out of school and began home-schooling him. When her middle son was diagnosed with autism as a baby, Becky took over. She went to preschool everyday to make sure that he was getting the proper care and feeding. Becky believes proper diet is “everything” when treating autism. She continued with his schooling until she was able to get him into a neighboring school district—all this while working two jobs.

So why a GED? Why now? Becky says, “I promised my grandfather that I would get my high school diploma. It took almost 17 years, but a promise is a promise.”

She tells her children that the word “ican’t” (I can’t) isn’t in the dictionary. “Look for it. It just isn’t there. Still, when people use that word and tell me ‘ican’t', I work harder. And someday ‘iwill’ and I can tell them all ‘idid.’”

Interested in submitting a story for O Sole Mio Sundays? What are the rules? There really aren’t any. I don’t care if your story is long or short. It doesn’t matter what your Moonlight situation was — whether M.S.- related or something else. Submit your stories to me and I’ll post them here. A lot of folks read this blog, so please let me know if you’d like your email address included with your story. Send along a photo if you’d like and I’ll post it, too. The only request I have is that you make a connection for my readers, explaining how your Moonlight inspired you. Describe the opportunities and the gifts you received from your Moonlight times and find a positive side to your story. Not everyone likes to talk about themselves, so if you have story about a loved one, a friend, someone who inspired you, send me their stories, too. As you can tell, we also take recommendations of nationally-published news stories that follow the themes portrayed here on Sunshine and Moonlight. Please submit appropriate links and citations when necessary. Click here to send Kim YOUR story! And, then be sure to visit Sunshine and Moonlight each Sunday for O Sole Mio Sundays!

Since I started writing about my Tysabri Travels, I’ve received a number of emails with questions about the drug and its efficacy and side effects.  When I visit a number of M.S. discussion boards, one in almost every ten postings is about Tysabri.  Folks in my personal life also ask about the drug, how it is administered and how it works.  It’s a hot topic. 

I frequently say that it is critical for all of us to be advocates in our own health (being selective in our choice of doctors, requesting copies of our MRI photos and reports, researching treatments and other issues with our disease).   One of the biggest questions I hear relates to how Tysabri is different from the other CRAB drugs.   From the Tysabri web site:

TYSABRI is different and it works differently.

·TYSABRI is an antibody, not an interferon or glatiramer acetate. An antibody is a protein made by your immune system

·TYSABRI is thought to inhibit white blood cells from getting into the brain and attacking nerves

·Keeping these cells from attacking nerves is believed to result in fewer brain lesions that cause MS symptoms

·The way in which TYSABRI works has been studied, but the exact way that TYSABRI works is not fully known

The easiest way I explain how it works is that there is a barrier (it’s called the BBB – Blood Brain Barrier) and Tysabri works to stop white blood cells from crossing that barrier.  If the white blood cells don’t cross the barrier, they can’t attack the brain.  If the cells don’t attack the brain, myelin isn’t damaged, nerves aren’t exposed, and new lesions aren’t formed. 

Tysabri doesn’t work to treat the symptoms of M.S., despite the fact that many, many patients see improvements after treatments.  I understand that some patients see relief from their “new normal symptoms” because the brain is being given a chance to heal (since it isn’t under attack anymore) and sometimes this healing resolves some or all of an M.S. patient’s symptoms either temporarily or semi-permanently.  The main goal of Tysabri is to prevent future attacks, limit the number of relapses, and reduce a person’s level of disability from M.S.

Like with any drug, there are risks associated with Tysabri.  We’ll talk about those in a future article, as we continue to ride the Ty-Train together.

For a few moments in time recently, I became a Diva, a Patient-zilla if you will.  I was thrilled to be selected for a new media campaign recognizing the medical facility associated with the doctors who diagnosed me and continue to treat me and my M.S.  I saw this as a terrific opportunity to shout “THANK YOU!” from billboards, newspapers, and via radio advertisements to my two favorite doctors in the world – the doc who calmed my fears and recognized the seriousness of my presenting symptoms and the neurologist who formally diagnosed my unfortunate, life-altering condition and has since helped me plan my new life with M.S.  “Sure, I’d be happy to have my chubby post-IVSM cheeks splashed along giant billboards of Lake Erie and in the metro newspaper”, was followed by, “What the heck am I thinking – gosh my cheeks are huge!”  Ironically, I didn’t once think about announcing over and over again to my part of the universe that “I have M.S.”  My story has become commonplace these days.  Most folks who know me personally are well aware and others who recognize me from my job, newspaper articles, TV segments, or my blog obviously know about my health situation.  The concern with continuing my crusade to educate others by going even more public truly never crossed my mind.  Apparently I was too busy focusing on more vain tasks at hand.

I’ve been part of some form of media for almost two decades.  I’ve had my fair share of bad hair days (or months), fat-faced candid photos that should never have been printed, and just all around embarrassing public moments captured on television and in the newspaper.  In fact, when our local newspaper ran a story about Sunshine and Moonlight just weeks after my diagnosis, my own father-in-law didn’t recognize me in the God-awful picture that ran across the broadsheet front page of the Health section.  (Yes, it was that bad).  But there’s even more at stake here — this is a multimedia campaign.  With giant billboards.  Giant cheeks blown up to giant size.  I anticipated that “the cheeks that ate Erie, PA” would cause multiple car accidents or scare little children. But I figured that the need to spread gratitude should outweigh my own personal vanity.  I agreed to participate.

On the day of the shoot, my realization of certain aspects of life changed forever.  I never, ever want to be a professional model (not that it’s something I really have to worry about).  It was nearly 90 degrees outside with almost 100% humidity and we were shooting an outdoor scene.  As I drove to the shoot with the A/C blasting, my thick and heavy jeans sticking to me, I couldn’t begin to fathom how things would turn out.  I just had a perm the night before and my curly locks were spiraling tighter and tighter as the morning sun grew brighter and brighter.  I suppose I was even a little nervous.

My nerves subsided as soon as I arrived and saw that locally acclaimed photographer Art Becker would be shooting the pictures.  The man has made beauty out of dingy architecture and has shot pics of nature that would rival world famous artists.  Art donated his time, expertise, and skill to create one of my public broadcasting station’s annual 54-Suite prints (“These Days”) for our televised auction this year.  I knew two things: (1) Art could make a monkey look gorgeous, so I should ease my worries about a curly-haired redhead with chubby cheeks, and (2) Art would never put his name on a tragically horrible photo.

Just as I thought I was out of the metaphorical woods of worry, we headed into the literal woods of photography.  The real woods – it was an outdoor scene, designed to have me frolicking in the grass without a care in the world (or at least that’s how the cute, young, lithe model looked in the spec art).  Unfortunately the sun didn’t want to cooperate.  Those of you with lesions on, near, or around your optic nerve will be able to relate.  I can’t look anywhere in the direction of the sun – or other really bright lights– anymore.  My eyes are just too sensitive. It’s not physically possible to hold my eyes wide option and I get dizzy and even nauseous when trying.  So, I was squinting.  No matter the position, my face was squished up. (Note to self: squinting accentuates already chubby cheeks).  Poor Art — moving that camera and tripod from location to location.  I had the best exercise in months that day.  Lying on the grass, propping myself up on my elbows, throwing in the towel, then moving to a new spot, lying on the grass, propping myself up on my elbows… (you get the picture). I had tossed off my shoes to be barefoot in the picture and after traipsing over patches of grass and into thickets in the woods, we made it work somehow and the shutter-clicking began. At this point I realized how hard it is to be a model. 

My arms were shaking from holding in a firm position.  My legs, crossed behind me at the ankles, were heavy from all my M.S. leg issues. “Hold ‘em up, Kim.  I’m trying, Art!”  Art was patient and allowed me to take breaks along the way.  An intern held up poster board to help block the sun’s rays.  The client watched patiently, too, although I certainly wouldn’t have blamed her for wishing the gal in the ad mock- up was the real one with the M.S. and not me.

Big smile! Small smile! Turn your hips! Tilt your head! Quit squinting! Look pensive!  What the heck does pensive look like anyway? I still haven’t figured that one out. Look through that garbage truck!  Gaze into the distance! Be natural!  Cindy Crawford, Watch Out!

All-in-all the whole escapade took less than 30 minutes, but it felt like a lifetime. Still, I had a blast.  The great folks from Fishtank Creative, under the lead of Mike Hermann and Jamie Potosnak, were amazing to work with despite the fact that Mike refused to pull out the Photoshop airbrush kit to turn me into a supermodel after I saw the first proof of the pics.  And I thought I was vain before the shoot.  I turned into the devil of self-criticism once I saw the proofs.  Excitedly, I now can say that I’m an Art Becker original.  And most importantly, I get to go ahead and shout from the rooftops that “Dr. [Erica] Grazioli gave me hope.  Dr. [Patrick] Murphy gave me peace of mind.”  Thanks to both of these stellar doctors and all the top-notch folks at Hamot Medical Center.

I’ve said it before.  Yes, I wish I had a life free of Multiple Sclerosis.  But since I don’t really have a say in the matter, I’m grateful that I have these doctors and this hospital in my corner as I continue to fight this disease day after day after day after day after….(she says, looking oh so pensively at the computer)….

Newspaper Ad:

Message of the Day: You don’t need billboards, newspaper ads, or radio spots to thank the doctors who provide you with great care and services.  A simple note, phone call, or a “thank you” during your next office visit counts, too!

Everyone needs hobbies, including me.  Just before I was diagnosed with M.S., I started taking ballroom dance lessons – the Rumba and Cha-Cha are my favorites. I got to the level of needing a partner and since I didn’t have one I gave up formal lessons and instead just dance around the kitchen these days.  

I used to kick-box, but now the high intensity of the workouts, combined with my dizziness, don’t allow for me to enjoy this outlet for exercise and stress reduction.  I’ve taken huge steps towards integrating other forms of exercise back into my life these last two weeks though, primarily through walking, stretching, and using low impact home gym equipment.

This week I ventured into another athletic arena – that of golf greens.  I only hit the greens once before (except for the occasional ‘beer wench’ duties within a golf cart at a tournament).  I was in college and one of my roommates wanted to take me golfing.  I emailed him earlier this week to help me recollect why, exactly, he kicked me off the course at hole number two.  “Was it because I was terrible at it or because I was impatient?” I asked.  He, the kind soul that he is (and because he’s a politician by trade) tried to blame it on having a ‘bad teacher’.  He then added “May the Lord bless him” when I indicated that the hubby was going to try to teach me to play the sport.  So much for the problem being with the teacher!

I’m actually semi-athletic.  I just don’t truly “enjoy” exercise.  I love playing volleyball (probably because I’m decent at it).  I love watching football and I’m highly engaged with the sport (some say more than your average football lover).  I’m a decent bowler, when I don’t get bored or distracted and actually pay attention to detail and form.  Bocce is fun.  But golf??? It’s so quiet.  So serene.  Requires patience and solitude.  So NOT Sunshine!

But the hubby asked if I’d consider learning, so I acquiesced.  We have friends, other couples, who golf together.  He tantalized me with the thought of hanging out on the women’s tee with the other girls; socializing in groups of other skilled golfers.  He pointed out the therapeutic benefits of walking the greens and adding another form of gentle exercise to my regimen– both of potential great benefit to a person with M.S. He even talked about the future, after his days of being able to play softball end – having an alternative in sight, something we can do together instead of just having me cheer from the stands.  I knew there was a conspiracy brewing as some of our other friends started to drop hints: “I hear you’re going to learn to golf, cool!” or “Can’t wait to get out on the course with you.”  I offered to have the job of driving the beer cart.  No good.  They want me to actually play.

I got the hubby to promise not to run to the Mall to outfit me with clubs, clothes, and shoes until I at least determine if I really want to learn the sport.  He agreed that he won’t force me to spend my weekends watching color commentators whisper the on-goings of a television golf tournament (big snooze there!).  He promised to be patient as long as I am willing to listen and learn and I try not to become frustrated.

We began Tuesday evening at the driving range.  On the way to the course, I reflected on days gone by, playing Putt-Putt with the kids.  How was I – the person who by the time she reached the little windmill with the hole in the center on hole four – going to keep myself entertained, patient, and engaged for 9, or worse, 18 holes of golf?  I then remembered the last time we played mini-golf, though, when I made two holes-in one.  Oh the jubilation!  I decided to focus on the euphoria that may be found on a real golf course.

Once we arrived at the driving range and I experienced the really cool golf ball machine that spits out balls (the highlight of my evening), we got set up on the range. My patient teacher and his impatient, “look there’s a chicken!,” easily distracted student, side by side, trying to learn which end of the club points up. (It IS called a ‘club’ isn’t it)? “Address the ball, Sunshine.”  “Hello, ball!”  “Keep your head down.  You’re peeking.”  “Ah, ah, ah, you’re swinging with your arms and not your shoulders.”  “Spread your feet, turn your feet, bend your knees, interlock your fingers, don’t interlock your fingers.”  This is very intricate stuff folks.  I thought I would just pick up a club with a number on it and swing at a golf ball just like a softball swing.  Wrongo!

I had promised to listen and to learn.  And I did.  I still stink – badly.  But I got off a few decent shots – long and straight.  Then I got tired.  I quickly learned what a divot is.  I missed the ball entirely (many times).  I started scolding myself about “peeking” as I felt myself looking off into the distance for a ball that was still firmly set on the ground or on a tee.  It was a start though.  I plan to continue to learn.

I just won’t be hitting anything other than a driving range for many, many more weeks to come.  Instead, I asked to be taken up on that beer cart duty while the hubby continues to golf with others.  What better place to watch, observe, and learn from others???