Archive | May 2013

Tough Mudders

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.” ~Michael Jordan

What is Tough Mudder?  As The Premier Obstacle Course Series In The World, Tough Mudder events are hardcore 10-12 mile obstacle courses designed by British Special Forces to test your all around strength, stamina, mental grit, and camaraderie.

The Pledge: (three of the statements)

As a Tough Mudder I pledge that…

* I understand that Tough Mudder is not a race but a challenge.

* I help my fellow Mudders complete the course.

* I overcome all fears.

“The dogmas of the quiet past are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise with the occasion. As our case is new, so we must think anew and act anew.” ~Abraham Lincloln

Recently, I became familiar with Tough Mudder at the gym.  Kevin, one of my gym buddies, was training hard for it and explained a little about the event to me.  *A group, from the gym, were participating together.  (Congrats on their finish!!)  If you have made it this far through my post, you are probably wondering, What does this have to do with Stiff Person Syndrome?

A lot of effort and training goes into participating in the challenges of a Tough Mudder, but participation is a choice.  A diagnosis of Stiff Person Syndrome is a daily (24/7) challenge with an unpredictable, always changing obstacle course.  Participation is never a choice.

The video of a Tough Mudder course is very much what a day of living with SPS can be — a neurologically-challenged body struggling against the physically-distorted reactions of visual perception, the energy/effort required to do the simple, often requiring a helping hand — a grueling obstacle course in the normal world of ordinary and mundane.

During my early years, regressive days or times, I have slid down stairs on my stomach, body rigid and trembling in spasm, drenched in sweat from exertion.  Maneuvering around scattered toys/items on the floor can be equivalent to navigating a minefield.  Crawling through the house, I look(ed) for handholds, footrests, plan a strategic move to round a corner.  With SPS, public outings have morphed into overwhelming challenges at the whim of syndrome symptoms.  The world takes on the appearance and physical grit of a Tough Mudder competition.

Syndrome spasms have twisted my torso muscles, much like wringing a dishrag — hijacking my ability to negotiate mobility release.  Injury from unforeseen body-slam falls becomes a defensive consideration in every move.  Pain is variable, but present every day.  The SPS Mudder is not 10 or 12 miles with a finish, but for every moment, of every day, for life.  There isn’t a training guide for living with the challenges of SPS, nor any debilitating diagnosis.  Training is learned as you live.  I liked three of the statements of the Tough Mudder pledge as they personally pertain to some of my coping strategies.

I cannot compete against the person I was before diagnosis, “not a race but a challenge.”  I can only be the best with who I am now.  “One day at a time.”  It takes a lot of work, determination, endurance, and positive mindset . . . (“strength, stamina, mental grit“).  It is extremely difficult living in a fickle body.  Last week….

For some syndrome mystery, pain was high and ability was low.  Sunday climaxed into a torso lockdown at the grocery.  Leaning on the cart, I managed a slow shuffle, my weight entirely on the cart, as my back arced in the familiar painful contraction of restraint.  Focusing on deep slow breaths, with attempted mind diversion of songs to calm visual overload, I managed to slowly shuffle/slide to the car . . . an accomplishment. Hoo-Rah!

Tuesday, I packed a lunch to take “Leon,” my jogging stroller, for a walk and picnic, outdoor therapy.  My short-circuited SPS nervous system unexpectantly connected?  I was able to trot an easy five miles . . . an accomplishment.  Hoo-Rah!

I can’t say I’ve overcome all fears.  Stiff Person Syndrome has a grim reality that I work hard to face with faith and optimism on a daily basis.  (Sunday was also an emotional challenge.)  I have some beloved syndrome friends (syndrome mudders) who are an encouragement to me many times, an outstretched hand of team support.  Hoo-Rah!

I loved watching the video of the Tough Mudder, the smiles and thrills of accomplishment.  I understand euphoric victory in overcoming a challenge.  My heart smiles at the thrills of my accomplishments, if just pulling weeds, tying my shoes, or jogging with “Leon.”  Hoo-Rah! 

Dedications:

To our nation’s finest and bravest, with loving gratitude — America’s Military.  The Tough Mudder raises money for The Wounded Warrior Project.

Often, I will use soldier and war analogy in describing life with Stiff Person Syndrome.  Living with a disabling disease is a life of front-line combat and the diagnosed are casualties.  To my SPS comrades — thank you for your encouragement, inspiration, and support.♥

*To my gym buddies — thank your for the smiles, fun, understanding, and helping hands.  “Hoo-Rah” for finishing the Tough Mudder!

We are Tough Mudders!

“It’s not what you can’t do, it’s what you can do!” ~ From The Wounded Warrior Project

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Strip – Tweeze

“Mid-life is when the growth of hair on our legs slows down. This gives us plenty of time to care for our newly acquired mustache.” ~Unknown

Chaplin[2]Introducing, from the silent film era, Charlie Chaplin, aka “The Tramp.”  Skip the tramp label, but with my midlife upper lip fuzz, I could be Charlene Chaplin.  Considering his heavy eyeliner, my mirror and society would say “tramp.”  Brows are questionable, but I have seen worse in the reality of life . . . Wal Mart excursions.

A midlife Murphy’s Law — out of “beauty” wax — the Sally Hansen lip zip for amateurs.  Dark Shadows — starring my upper lip.  Browsing the shelves at Target, there were numerous products promising to make my lip as smooth as a baby’s behind, but I was skeptical.  Sally was tried and true.

Encountering two sisters in the lady’s hair removal aisle — yes, they have shelves of products — we had an animated discussion on lip hair/lip fare.  Finally, they shared Sally Hansen had the best product in their experience.  So… a scavenger hunt for Sally Hansen Wax for hair removal.  Finally, the last box on a bottom shelf.  We parted on giggles.

I have used this product for years.  Sticking the container in the microwave, I nuked it at the recommended time and setting — still as hard as when I put it in.  I nuked it a second time with the same results.  On a time restraint, I raised the setting and gave it a third nuke.  Still hard.

My Sally Hansen kit came with tiny tweezers (no magnifying glass), an application spatula, and a poke-your-eye-out toothpick to part eyebrows if brave enough to wax those.  I picked up the assault toothpick to poke through the wax surface.  While the surface was still as firm as ice on a frozen river, an undercurrent of hot runny wax splashed out at the poke and landed on my hand.

Cold water set up the molten drops; now for peeling them off.  Pain must have triggered a dementia-type mindset.  I mentally regressed back to pulling colored drops of candy glued to paper as a child.  Pain shocked me back to the present, pulling the wax drops off my hand and scraping the splatter off of the vanity.  Skin remained intact, but I redefined “exfoliation” with that maneuver.

Stirring and slowly nuking the wax to the desired temperature and consistency, I iced my lip with the spatula and lip-zipped my upper lip-line.  Smooth and baby-soft, my kisser was no longer a lip-tickling threat.

Scrutinizing my eyebrows, waxing was not an option nor the teeny tweezers.  I selected my old faithful anglers from the medicine cabinet and began the pluck/plucking.  There should be a warning on the Sally Hansen box…. “Do not sell to minors or anyone over the age of 50!”

I will continue doing my strip-tweeze.  If my few straggling chin hairs ever overpower my tweezers, desperation might consider a cutting-edge change — but there is the concern of slitting my own throat?

I am a middle-aged, disabled diva and loving life!

SPS Mother – Love Shows The Way

“Mother love is the fuel that enables a normal human being to do the impossible.” 
~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother’s Soul

“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.” ~Sophia Loren

I always wanted to be a mother, loved raising my children, still love being a Mom.  My second child, my oldest daughter, was born with a terminal, genetic, neurological disorder, no medically known association with Stiff Person Syndrome.  I refer to her as my “shooting star.”  Her short life taught me patience, joy in the simple, appreciation for ordinary, and to cherish the moment.  My faith was strengthened.  With her death, I experienced profound loss.  She helped prepare me for living with Stiff Person Syndrome on many levels, except how to be a disabled mother.

When I was diagnosed, my son was seventeen, almost grown.  My youngest daughter was only four, still needing a “hands on” mother.  Grief and fear were part of my emotional shock at diagnosis, not just for myself, but for her.  How was I going to be an effective mother when I could not walk, barely crawl while in continual spasm?

In my website, Living With Stiff Person Syndrome, I share a pivotal moment.  From the car, I watched my little girl struggle to open the heavy preschool door during a rain until a schoolmates’s grandmother opened it for her.  As drops of rain trailed down the car windows, tears streamed down my cheeks . . . unfit.  Back home, I struggled into the recliner.  I prayed, cried, and thought of how I was going to mother my youngest child.  Love will show the way.

Not one of my children came with a “how-to” manual.  It was a learn as I go.  I was young and inexperienced with my son, religiously followed healthy baby guidelines that are now outdated.  With my second, learning/implementing medical procedures for her care, while coping with my son’s and my emotions were daily challenges.  Love showed the way.  With my youngest, I started thinking about how I could mother with a limited body.  Imagination is wonderful and has no limits.  It was day by day, struggle by struggle, wonder by wonder.

Books, movies, Barbie mall, beauty shop, doctor, dentist . . . we laughed and played.  “In spite of ” SPS, I greatly enjoyed my daughter.  She did not see my limits.  She only saw me as Mommy, her everything.  She made the syndrome magical in some ways — spasm was “spazzle.” Scooting down the stairs on her behind, she told me she wanted to have fun, “just like Mommy.”

As she grew, love not only showed the way; love made a way.  In a parody of a spy thriller dodger, I would slide against walls, look for vertical tangible support with some sort of gait aid to attend her school functions solo.  She was never ashamed of me, always thrilled for me to show up.

I did not discuss SPS with her much, just answered the few questions she may have had.  Considering the personality of my youngest child, that is saying a lot.  She did observe though.  Recognizing distress, she learned at an early age how to help me.  In many ways, my SPS was an unforeseen blessing/teacher in her upbringing.  Strong and individually unique, she has an understanding heart, deep compassion, and wisdom; but zero tolerance for deliberate ignorance.

Now, she is a young woman with a family.  I am in awe of her capabilities.  My worried tears of so many years ago are now tears of pride.  Since she grew up with my SPS, more than anyone in my life, she understands a potential trigger for my symptoms and instinctively knows how to aid me — shopping, hikes, neighborhood walks — finely tuned in to any quiver, startle, or stumble from me.  As I held her hand when she was little, I still hold on to her for stabilization as an adult.

My children, my jewels from heaven.  My son, my firstborn, is an accomplished man.  To quote my son, “We did alright, Mom.”  My second child, my angel baby, taught me so much about God, life, and myself during her brief life.  My youngest, my blessing, gave me reason to live forward with the onset of Stiff Person Syndrome.  With the innocence of childhood, she walked a difficult road with me. Through her eyes, she saw me. 

To my children, who only see the best in me because they are the best of me.  With all my love.♥

                                                                       

A Special Lunch

“To know someone here or there with whom you can feel there is understanding in spite of distances or thoughts expressed. That can make life a garden.” ~Goethe

An extremely rare diagnosis of Stiff Person Syndrome (SPS) also comes with loneliness and isolation . . . a never-ending need to explain with only a glimmer of hope for understanding.  My first communication with another person with SPS was via an Internet support group in 2000, six years after my diagnosis.  Euphoria filled the empty void in my life to have an outlet of mutual understanding.  In the following years, I have personally met 24 or 25 individuals with SPS.  While the Internet can be a wonderful communication tool, I still prefer “real life” to virtual.

Jennifer Trednick & I met on Rare Disease Day as participants for the awareness event in our area.  It was coincidence that we both have Stiff Person Syndrome.  Jennifer told me about Kathi Rose, another lady with SPS, suggesting we all meet for lunch.  After some email tag and schedule shuffling, we had a date, place, and time.  Jennifer, Kathi, and I met a few weeks ago — lunch at an upscale Italian restaurant, located in an Emerald City shopping center.  Instant rapport.  Both ladies are intelligent, optimistic, fun, and full of life.  We share the desire to live forward, know the ugly realities, but embrace the possibility of each day.

Over lunch, we shared diagnostic stories, similar symptoms, differing symptoms, physicians, movement issues, off days, good days, and strategies.  Considering the gravity of SPS topics, our animated conversation could have been on the latest fashions, shoe sale, or hair salons to onlooking patrons.  Dialogue was void of self-pity, negativity, or victimization.  Talking with two women who genuinely understood was liberating, validating, and cathartic for me . . . a good time!

In sharing medications, Jennifer pulled out a sheet of paper to take notes on a certain med — similar to scribbling down the ingredients of a recipe — this one for a batch of unhindered movement.  We shared thoughts on coping.  Physically, we all jump through medication hoops and push personal limits, but yield to the flashing SPS stop sign.  Though emotionally painful, cutting toxic people and situations are necessary for health.  Limited ability is on a timer.  Drama, if a choice, gets taken to the curb.  Laughter, positive people, goals, and “doing” are as necessary as medication.

We learned the general personal details of one another’s lives while validating and learning from each other about the cruel syndrome we share — “the tie that binds.”  (Figuratively and literally.)  Shared female laughter and girl-talk made a few appearances into our lunch talk.

Jennifer and I are both insulin-dependent diabetics with insulin pumps.  If I remember correctly, Kathi is borderline.  Diabetes was another topic of conversation.  Sharing included a show-and-tell of one another’s rigid back.

We had our picture taken outside of the restaurant, normal-looking ladies having lunch.  I greatly enjoyed meeting Jennifer and Kathy, two amazing ladies.  When our busy lives align, we hope to get together again.  It was a special lunch.