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.

 

Hand In Hand – Rare Disease Day

Rare Disease Day - February 28, 2013

Rare Disease Day – February 28, 2013

“The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” ~ Mitch Albom

“As we work to create light for others, we naturally light our own way.” ~ Mary Anne Radmacher

I have Stiff Person Syndrome, a diagnosis that afflicts one in one million.   It is estimated there are 300, possibly 400, individuals in the United States with SPS.  We are a very small community in the definition of “rare.”  A rare disease is categorized as a diagnosis of fewer than one in 200,000.  There is estimated to be 7,000 rare diseases.  (NORD information)  Collectively, one in ten individuals has a rare disease — 30 million Americans.  Living with social misunderstanding and isolation, finding knowledgeable healthcare, and facing daily struggles and challenges are issues I share with everyone diagnosed with a rare diagnosis, not just Stiff Person Syndrome.  We are the Rare Disease Community.  Together we are strong.

Jacksonville Landing - Inside Display

Jacksonville Landing – Inside Display

February 28, 2013 was very special to me.  I was involved in Rare Disease Day.  From my personal endeavor of running a 5k and honored as a guest blogger for the NORD blog (National Organization for Rare Disease), I participated with others in my area on the 28th.  Cynthia did an amazing job organizing the first-time event.  Meeting another individual with Stiff Person Syndrome was an unexpected and rewarding experience.  Sharing was an encouragement for each of us in the group along with being informative for interested onlookers.

Knowing other groups/individuals, world-wide, were doing an outeach of awareness knitted us into a global fabric of unity — one voice.  Hear us, see us… understand, care.  In Washington DC, the Rare Disease Legislative Advocates (RDLA) had several days of hearings on our behalf.  To be a participant, in the equivalent of The Rare Disease Olympics, gave purpose and meaning to my diagnosis.   With thoughts swirling in my mind for next year and the months leading to it…

Hand In Hand

Hand In Hand

Copyright © 2013

Dedicated to the Rare Disease Community — Olympians, every day, with every breath.♥

5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Racing Against Stiff Person Syndrome

“The miracle isn’t that I finished. The miracle is that I had the courage to start.”
-John Bingham

My limitations with Stiff Person Syndrome made training for the 5K extra challenging, daunting at times, a few days impossible.  Fear was consuming because of SPS unpredictability. Publicly announcing my intent to do the 5K committed me without knowing if the starting line would be approachable that day.

After two weeks of intense anxiety interrupting my sleep, an unexpected calm settled over me the night before the Donna Deegan 5K Run. I drifted off to a peaceful night’s sleep, briefly interrupted by a nocturnal sugar drop.  After a small snack correction, I went back to sleep.

I woke up at 4:30, alert, excited and looking forward to the 5K experience. Packing a backpack with my half case of water (weight stability for my stroller), diabetic supplies, snacks, and medication; my preparation resembled a wilderness trek instead of a city run. One thing I learned from my six weeks of 5K boot camp was having a strategy for optimal food intake and medication timing.

Banter with friends helped keep my mind preoccupied. I felt a connection with the crowd: running in tribute, support, or in memory — several survivors. Though their advocacy was for breast cancer, mine was for Stiff Person Syndrome, Rare Disease Day, and Lulu (breast cancer and SPS).

As the starting time neared, a few jitters started to poke at my well-being. Since I had a jogging stroller, I was delegated to the back of the pack, a sensory relief for me. With my beginning steps, I felt comfortable with the pace, the crowd, with me. As I started to pass the walkers, my confidence grew.

As in my early running days, I entered a mental zone, aware of my pace, in sync with my breathing, focusing on the pavement in front of me. SPS sensitivities often crank up the volume on my sensory intake, but navigating around the crush of people with my stroller was a mental diversion. Agoraphobia was not an issue… just concern over ramming someone in the backend.

A personal competitiveness set in, not against the other runners, against Stiff Person Syndrome. Hitting the second mile mark at 25 minutes, I exhilarated in the possibility of finishing.  Just one time… taking something back that diagnosis had stolen from me. Crossing the finish line was a personal victory over Stiff Person Syndrome for me.

At home, I wept for many reasons, but mostly with gratitude.

Photos – Donna Deegan 5K – 2013

My racing stats:
Gun time:   38:03
Chip time:  37:10

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Two Days Before the 5K

“We must let go of the life we have planned, so as to accept the one that is waiting for us.”
~Joseph Campbell

Thursday was my last practice run. Checking the clock, 4:00 gave me ample time to drive to my outdoor training ground and back home before dark.  My heart sank as I did my routine blood check before leaving — 54 and dropping.   Turning off my insulin pump, I ate a snack, but needed additional sugar for the carb expenditure of exercise.

Topping off my tank with a protein bar, two Reese cups, and two boxes of apple juice, I did not have time to allow my food to settle before the sun set.  Starting with a brisk walk escalating into my geriatric trot, the contents of my stomach were a nauseating reminder.  “In spite of” the hypoglycemic episode, I finished in an impressive time for me with a glucose reading of 115.

Today was busyness.  A lengthy errand involved a trip into the city and dealing with the mayhem of getting my race packet.  Fate smiled on me with a close parking spot.  The Donna Deegan Marathon for Breast Cancer is a national event.  The Convention Center was jammed with various aisles and booths, colors, people, and noise everywhere — a continual movement of pastel confetti to my syndrome perception.

There will be over 1,000 runners in the 5K, more participants in the marathon and half-marathon.  Excitement and camaraderie reverberated throughout the building… Every person, a story.  How appropriate this race is for me, for Stiff Person Syndrome, paraneoplastic syndromes, Rare Disease Day.

I wavered between angst and excitement all during the day, my neurons subtly firing with medicated suppressed “snap, crackle, and pop.” Several times I practiced a deep inhale, slow exhale to calm my racing heart.  With the familiar security of my jogging stroller navigating me through the crowd, it gave me a sense of calming confidence.

Before SPS, the racing “if” always concerned time.  Since SPS, the big “if” has become if I will be able to do it.   Tomorrow morning will involve planning the timing of my medication, food intake, packing my medical supplies, and anticipating having fun.

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Guest Blogger on NORD – Rare Disease Day

Debra-Richardson

 STIFF PERSON SYNDROME: A FIGHT TO THE FINISH LINE
February 14, 2013

I already view tomorrow as a triumph, crossing the finish line will mean many things to me.  Whatever happens, it is such a priviledge to reach a point in my 20+ years of daily living with the challenges of SPS to attempt something I thought was forever lost.  Whoever reads this, whatever life throws at you, the future is always speculation.  Never lose hope, heart, or the desire to try.

With love,

Debbie

Dedicated to many who have left prints on my heart & to God, my “refuge & strength.”

Febrary 28, 2013

Febrary 28, 2013

An Ordinary Day

Uptown Girl

Uptown Girl

“I am an ordinary person who has been blessed with extraordinary opportunities and experiences. Today is one of those experiences.” ~Sonia Sotomayor

Yesterday was appearance two of my winter medical tour.  (Tickets on Ebay.)  I had an 11:45 in the city.  Morning routine: meds, bloodcheck, quiet devotional time, coffee while chatting with my mom, and breakfast.  Made the bed, showered, dressed, & did the female public spoofing — on schedule.

Medication eval, time for mid-morning meds and (ominous hush), the interstate.  Though not taught in highschool driver’s education, I quickly learn interstate/rush hour sign language.  Carmen, my nagging garmin, always argues with me over the restructured city infrastructure.  Crankin’ out some rock n roll oldies, Carmen whines “recalculating,” in a repetitive stutter as I veer onto the short exit to an abrupt stop at the medical practice.

With pride, Rocky (my wheeled gym bag), and Frac (one of a set of hiking poles), guide me by my lonesome across the drive to the door.  (With SPS, a solo entrance is always a surprise!)  I sign in just to be told I am two hours early and cannot be worked in.  Stiff Person has taught me to be flexible.  I move the ‘after’ Wal Mart visit to the two-hour wait slot to also include a Mickey D’s desperation lunch.

Cities have everything but a Wal Mart.  Getting directions to the closest one, I travel to an unknown suburb 15 minutes away.  Hastily eating my lunch, I’m off in an SPS version of a shopper’s grab race to collect the items on my list.  Locating one of three open lanes of twenty, I check out and make it back to my appointment, listening to Carmen’s protests again.

A beaming physician comes in with my two-inch chart.  I aced all my labs.  (Still have my triple diagnoses though.)

Some interesting conversations, five-minute friends, from my day:

+ I met a woman outside of the office with a rare disorder(s).  Upbeat, we talked shop and I was actually familiar with her meds.  Fast friends.

+ Bantered with the elevator people, always do.

+ One of the building’s security personnel was downstairs and walked me to my car.  He is one of my regular ‘walk and talks.’

+ Was included in some inside employee intrigue at Wal Mart with the cashier and an employee off the clock.

Feeling thankful for my lab results, I chose to avoid the rush of the interstate with a leisurely drive through the quieter city streets, absorbing the magnificent buildings, intricate bridges, glistening water — later the antebellum homes of the historic area.  Yielding to a needed caffeine boost, it was another McDonald’s stop for an iced coffee to continue my drive and ‘high five’ day.

Another med eval and bloodcheck.  Having weathered a few rough days, I thought a gym visit might help loosen things up.  After initial objections, my body responded in unison with my mind.  To compensate for the earlier unhealthy fast food lunch, supper was a Mt. Everest gourmet salad.

Fatigued and in pain, I was feeling the physical effects of a busy day.  Filling the tub with hot water and scented soap, a music channel soothed my senses as the steaming soak relaxed my body.  The heated electric blanket on the mattress beckoned as I slid between the covers.  I went to sleep happy, at peace, and with a prayer of thanksgiving on my lips.  I cherished what many would consider “an ordinary day.”

Love Is All Around (Theme Song from The Mary Tyler Moore Show)

Copyright © 2013

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