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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

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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

Rare_Disease_Day_Logo_Hope_1

2013 – A Year Of Firsts

JamieLeeCurtis

Rainy Day Books

“The only failure is not to try.” ~Debbie

“Success is a ‘try’-angle.” ~Debbie

I slid into 2013 from a very hectic and rewarding ending to 2012.   Jamie Lee Curtis was on television discussing her new children’s book.  I fell in love with the book’s title, becoming my resolutions for 2013 — a year of “firsts.”  Giddy with the possibilities swirling in my head, common sense negotiated on a minimum of six.  As always, the unpredictable elements of having SPS & brittle diabetes is a hovering storm cloud over my sunny dreams, but it makes for an interesting life. (!??!)

Balance was key in selecting my goals — physical challenge, mind stimulation, spiritual growth, life experience.  January quickly passed working on a physical challenge.  SPS unpredictability makes completion a Vegas bet.  “The only failure is not to try.”  On a friend’s invitation, I was introduced to an unexpected mind stimulation.  I absolutely love it and look forward to future meetings, the possibilities.

I hope to explore some cultural avenues.  Sharing a mutual love for the outdoors, a playing in the dirt buddy asked me, “Why?”

My answer was, “Life is a buffet.  I want to taste different things.”

Recently I bought a very unique hourglass.  It is fascinating to watch the sand slowly sift in the beginning to a rapid sinkhole as it empties.  With a flip, I can watch it empty again.  Life is not an hourglass.  I do not get a second flip when the sand empties.

I am excited and a little anxious about this year — “tries, sighs, and high fives.”  In an evening celebration, I turn on an oldies music channel on the television and light a scented candle.  I fire up the grill to cook steak, medium well coupled with a salad.  Toasting life, my life, I take a sip of a great Merlot, thinking about where I have been and where I am going.

As 2013 unfolds… “step by step; day by day.”

“To get through the hardest journey we need take only one step at a time, but we must keep on stepping.” ~Chinese Proverb

Copyright © 2013

Mall – A Four-Letter Word

“Shopping is a woman thing. It’s a contact sport like football. Women enjoy the scrimmage, the noisy crowds, the danger of being trampled to death, and the ecstasy of the purchase.” ~Erma Bombeck

Female shopaholics squeeze into tight parking spaces, racing in a purposeful speed-walk to grab advertised bargains with a Christmas adrenaline frenzy into — the mall.  Christmas shopping at the mall — the big girl Walt Disney Park — admission only requires a valid credit card.  Doors swoosh open to an angelic choir singing “aaahhh!”

With Stiff Person Syndrome, the mall offers as many kicks and giggles as a pitch-black maze, feel-your-way-out, Halloween haunted house.  As usual, I “think” I have a mental grip of this deliberate assault on my SPS symptoms.  The City of Bedlam (parking lot), has no room to get in.  My handicap placard has become a worthless plastic trophy of disabled proclamation. Circling the lot with other determined “grab the first available spot” cars, we resemble airline jets waiting for the control center to give permission to land — not a good start.  Omen?

Parked in Penney’s Netherlands, I grab my two confidence-boosting gait aids, my hiking pole and wheeled backpack.  The kindness of a stranger navigates me across the road of Daytona racers as I enter — the mall.

The mall — a personal Stiff Person perception of red-alert-danger, my deranged neuro-inhibitory system begins its excited jangle.  The entire store is a writhing mass of movement — a bucket of poisonous snakes.  Bright lights bounce off the high gloss floors while my senses are acutely aware of the noise… all the chatter, closing cash registers, boisterous children.

The squatting GAD-antibodies know it’s party time.  I sense their arousal as they overpower my medicated nervous system.  Perception overload is giving shots of cheap tequila to the GAD jumping beans with handfuls of uppers.  I am hosting my own crash bar party at — the mall.  It may be Christmas but my nervous system is having a raucous Cinco de Mayo.  The antibodies are cranking up music for a Mexican Hat Dance.  My torso starts to tighten as I try to steady the emotional angst.  Just get the gift card, breathe, and leave.  My body will not allow me to free-stand in the long register lines today.

Trying to blend in, a lady with a stiffening gait, wheeled backpack, and hiking pole can look a little suspicious at Christmas… shoplifter? Another round of tequila for the antibodies.  It is “only” a small walkway but my body will not budge.  I navigate around clothing displays to find a more comfortable crossover.

Passing a catatonic gentleman sitting in a folding chair by makeup, I still have enough control of me to tease.  “Having fun?”  Life resurfaced in his responding smile.

An opening.  A wall of people are coming.  Steady.  Wait.  Pass behind them and take a deep breath. Polka-dot bras and seasonal panties greet me as I manage to get to shoes (ugly styles), moving to get my store gift card at the salon.  Acutely aware of my surroundings and attempting to control the inner growing assault of the getting high antibodies, my lower back is hurting with the back-bending contractions of “SPS Gone Wild – Christmas Break.”

Movement is getting harder, the extra meds are barely keeping me at the level I am, and my mind is getting tired of assessing the external while dealing with the internal.  Breathe.  I make it back to cosmetics and the dutiful husband is still sitting in the folding chair.  “Still here?”  He smiles but his comeback is a bored grumble.

The exit!  Stepping outside, I am on the wrong side of the store.  A long stretch of sidewalk taunts as the jumping beans are now bouncing with superball anticipation.  I hear whispers of having a pinata — my head on the sidewalk.  With the slow, deliberate steps of SPS, I concentrate on the border boundary as I lumber up the walk.  Squelching panic, it is another wrong exit.  I will have to go back into the store to exit number three.

Omitting repeated Stiff Person drama, my body is aching with stiffness and mini-spasm and my mental fortitude is stretched to the limit.  Home, lay down, recover.  This time, my kind stranger holds onto me as he guides me across the Daytona Speedway.  I just say that I have balance issues.

Away from mall overload puts a halt on the Cinco de Mayo in my nervous system.   At home, under my blankie, my body begins a slow relaxation recovery in sync with me calming my stimulus-raped senses… CSI-SPS.

Mall is a four-letter word.

Copyright © 2012

It is my heartfelt prayer that God’s love fills your heart with peace, joy, and hope.  May 2013 be a year of health and happiness. Merry Christmas, with love.

MIA – Missing In Action

“Only as high as I can reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be. ” ~Karen Ravn

Time does fly – on turbo jets!  I have not entered a blog post since summer.  Now I understand the facebook picture circulating of me as a missing person…

AWOL – absence without leave.  My body (bunkmate), left my life over two decades ago taking with it unhindered mobility, physical freedom, unlimited choices.  I was abandoned in the “you will never get out” boot camp of chronic illness – alone with (hushed whisper), Drill Sgt. Stiff Person Syndrome and Lt. Diabetes.

Somehow I adjust or take my licks, but I am still a defiant recruit.  With Sgt. SPS, you never want to hear “drop and give me…” or “move it!”  I am still learning about Sgt. SPS, his prominent role in my life, and boundaries.  With determination, response to meds, effort, and time, I am given precious furloughs – “me” time.  Boundaries can sometimes be breached in quirky creative ways.

In 2010, I opted for intensive training, a two-year introspection/restructuring of my life… equal to the grueling Navy Seal “Hell Week.”  I worked on my mind, healing my spirit, challenging my body.  This year, my furloughs have been diverse and far-reaching.  Time has gotten away from me, but not life.

From travels to Tampa and Savannah, Blue Ridge Mountains to the Rockies, Atlantic Ocean to the Great Lakes, most included family and friends.  Gym workouts, community classes, church, scavenger shopping, dinner outings, and various misadventures – correlated around my demanding medical schedule – captured by life.

With a blessed heart, I realized a dream – worth the fall, fatigue, re-energized arm neuropathy, and aching muscles… 2012 – my “tween” year.  So… my email is a dusty pile, my syndrome advocacy has stalled, and my blogs have been neglected because I have been MIA – missing in action.

In times of restful silence, my thoughts (and aches), view my Christmas tree with future dreams and reflective gratitude… “in spite of.”

Copyright © 2012

A Moment

“Nothing valuable can be lost by taking time.” ~Abraham Lincoln

Before my Stiff Person Syndrome diagnosis, I savored life as a super-sized–fries with that please–get it to go bagged rush.  Hope they remembered ketchup; did I ask?  I enjoyed life from the fast lane of juggling work, children, home with bites of vacation, make time for a book, stolen minutes of solitude.  The future beckoned with slower paced promise, “the” time to enjoy life more than I already did.

Diagnosis was a brick wall crash splintering my windshield view of all the envisioned good times, crumpling my hectic now…gone in a moment.  I could only look with grief through the intact rear view window of “what was.”  Crawling from my life’s wreckage, busyness became surviving a day of symptoms, escalating doctor appointments, a future destiny of joy became deflated tires going nowhere.

It would be so easy to stay in a Comfort Inn in defeated complacency.  I still had a little Daytona in my engine.  I began to see possibility in overlooked slowtrotting, harnessed my wagon to a bony nag and began my rut-jarring life journey in unchartered territory.  I did not expect the wonders of seeing the world through a slower pace of disabled challenge.

Time.  What I have learned–an hour is an hour, frenzied sprint or savored stroll.  A second is an eternity when twisted in painful spasm or a wonder when looking at a twinkling summer sky.  My biggest regret?  Rushing through life before my diagnosis and letting all the possibilities of a moment slip through my fingers because I did not take the time.

This summer I was traveling along an interstate.  A road sign advertised “scenic overlook” ahead.  Years of speeding by numerous scenic overlooks convicted me.  I pulled over.  I grabbed my camera, hiking pole, & surrogate wheeled backpack, “Rocky.”  I managed the slight downward graveled incline and took a moment to enjoy the view of the scenic picture heading this post.

A moment.

To realize the value of ONE YEAR, ask a student who has failed a grade.
To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.
To realize the value of ONE WEEK, ask an editor of a weekly newspaper.
To realize the value of ONE DAY, ask a daily wage labourer who has kids to feed.
To realize the value of ONE HOUR, ask the bride who is waiting to meet her groom.
To realize the value of ONE MINUTE, ask a person who has missed the train.
To realize the value of ONE SECOND, ask a person who has avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who has won a silver medal in the Olympics.

~Unknown

Copyright © 2012

Touch Me

“A woman’s heart is a deep ocean of secrets.” ~Gloria Stuart

“I am middle-aged, chronically-ill, and disabled.  I am also a woman, with a woman’s heart.  I would like to share a short poem I wrote a few years ago.  First love? Lost love? Current love? Future love?  A combination of all? …an ocean of deep secrets.

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Touch Me

Touch my mind.
Share my thoughts.
Enter my dreams.
Know me.

Touch my soul.
Share my essence.
Enter my being.
Understand me.

Touch my heart.
Share my offering.
Enter my life.
Love me.

Take my breath.
Touch me.

Copyright © Debra A. Richardson