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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.

 

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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

I Am Alive!

Every man dies – Not every man really lives.” ~William Ross Wallace

No one ever finds life worth living – one has to make it worth living.” ~Unknown

“A life worth reliving.”

Occasionally I will take a community class–fun, social, learn a new skill (?), mind expansion. A few years ago, the instructor of my chosen class gave us five minutes to write our epitaph. I pulled the above caption from the sincerity of my heart “in spite of” some of the cards fate had dealt me in life.

Watching my second child succumb to the cruelty of a terminal genetic neurological disorder, my Stiff Person Syndrome diagnosis was a mind-numbing moment due to the horrendous enormity of what I was facing, yet again. “Sudden Death” was a possible grim prognosis on the papers submitted to insurance for approval of treatment. In 1994, not having Internet access to some of the stark information about SPS did not further fuel the consuming burn of fear charring my spirit.

Love is a strong motivator, my family. Determination, prayer, and coming to terms struggled with the severity of my symptoms. In the stillness of the night, sleep eluded me as the reality of my diagnosis taunted the fears of my mind while my body ached with relentless pain.

In an archaic medical article, I read a passage my heart embraced with hope. “The course is slowly progressive or indolent.” I envisioned the lazy river of my childhood, a peaceful escape for me. It was during this time a truth relevant to every living person focused with clarity for me…

Tomorrow is never a guarantee for anyone. Today, this moment, is all anyone has. With good health, my presumed longevity was so casually taken for granted. With a chronic illness, I came face-to-face with my mortality. I had two choices: 1) Live each day as execution day on death row. 2) Deeply appreciate and live for the moment. I chose the second option.

Years later, my prognosis of “Sudden Death” is still on paper in one of my medical record boxes. With the band aid fix of treatment and medication, my symptoms have improved. The Grim Reaper is still an ankle-biter keeping me grounded. In 2007 I had a near respiratory arrest in an emotional confrontation. I have had a few unexpected falls along with a couple episodes of full-body spasms, vicious reminders.

I am a ‘brittle’ diabetic. Diabetes is one of the syndrome’s best friends, possibly lover. Yesterday I went from normal readings to a 457 before bed to wake to a sweating 37 at 3:30. I walked down the hall in a familiar nocturnal kitchen raid for my mini candy bars and a toddler grape juice. I woke this morning to sunshine, a rested body and gratitude. My sugar ranges are like the Wall Street Stock Exchange on crack. I am considering making my glucose readings a Vegas bet. But…

I am a well-loved woman, close to my family, have amazing grandchildren and loving friends. Blessed with imagination and a sense of humor, I laugh often. Life is joyful. Inquisitive, there is so much to learn, see, experience. When my meds peak, I make good use of my allotted time of ‘functional’ disability! Grateful, I embrace the comfort and blessings God continually gifts to me.

Recently, I enjoyed the freedom of a solo road trip. Cranking up a mix of tunes, my thoughts soared, my heart sang and the diversity of roadside beauty distracted my white line vigilance for a few seconds of rapt appreciation.

I am alive!

Video: I AM ALIVE

I would rather live my life as if there is a God and die to find out there isn’t, than live my life as if there isn’t and die to find out there is.” ~Albert Camus

Copyright © 2012
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Axis Of Evil

“It’s no longer a question of staying healthy. It’s a question of finding a sickness you like.” ~Jackie Mason~

President Bush coined the phrase “axis of evil,” in naming three countries as a terrorist threat. I can think of the mystery-enshrouded Bermuda Triangle, the folklore, “Death comes in threes,” and especially three sisters I babysat in linking the number three with threat and terror.

Threat and terror are now a trio of diagnoses, my own axis of evil. I acquired insulin-dependent diabetes 20 years ago, along with symptom onset of Stiff Person Syndrome, (SPS)…a dreadful duo, bolstered by a recently added third diagnosis of Hashimoto’s Thyroiditis.

My underactive thyroid has been the culprit of my recent muscle aches, joint pain, and debilitating fatigue. It is a sad commentary I was relieved at the hypothyroid diagnosis. My SPS wasn’t in rapid decline. One month into my lifetime thyroid replacement medication and I should be as good as??

While other women collect shoes, jewelry, and antiques, I collect medical specialists, prescriptions, and diagnoses. Three chronic, autoimmune illnesses and I still have not found one I like.

Copyright © 2010

Rare Disease Awareness Day – February 28, 2010

Sleeping Booty

Last night I lay in the darkness, longing for the sweet oblivion of sleep…a temporary reprieve from the reality of pain and discomfort…maybe the bonus of a romantic dream with a sexy hunk.

After two hours of chasing thoughts: yesterday’s regrets, today’s worries, tomorrow’s to-dos; I finally shuffled down the hall for a 2:30 am blood-check. I clock in at a conscious and lucid 45. Nibbling a miniature Hershey bar and sipping a 15-carb apple juice, the fluorescent kitchen glare revives my tired eyes for round two of insomnia with fatigue-enhanced pain. After three hours of restless sleep, I drag my tired butt out of bed.

Having more than one chronic condition, along with medication/treatment side effects, creates a tangled mess of symptoms. Trying to determine exactly what causes what symptom is more difficult than detangling a box of miniature Christmas lights wearing mittens and a blindfold. I live in a fog of fatigue.

In my last entry, I mentioned a day of (literally-$$$) double-billing physician appointments. I had a performance with a periodontist in the morning. After my mid-morning/lunchtime break, I had an afternoon appearance request by a pulmonologist following my sleep study audition.

Donning my “jammies” for my sleep study, the sleep tech hooked various electrodes to my head and legs. An oxygen monitor was clipped to my index finger, a glowing red ET prop…”Ouch.” In hi-tech fashion, I was spied on and cyber-analyzed during a fitful night of zzz’s. The pulmonolgist reviewed my results to discuss possible problems with me.

The diagnostic verdict: I sleep like crap, no singular reason outside of Stiff Person pain or nocturnal sugar plummets. With the promise of each new day, I drag my sleep-deprived derriere out of bed.

“Not being able to sleep is terrible. You have the misery of having partied all night… without the satisfaction.”
~Lynn Johnston~

Copyright © 2008

CIA Blues

I am a rock,
I am an Island.

And a rock feels no pain;
And an island never cries.

~Simon & Garfunkel~

Chronic Illness Attitude Blues. Yep, I get them, temporarily consumed in a melody of woe while soulfully lip-syncing with gritty emotion…usually at an occasional pity-party for only me, impromptu and private.

A common misconception…expectation (?) of coping for an individual facing/dealing/living with a crisis will be “buck-up,” with a smile and fortitude, head on. I can candidly say, “Faith, humor, flexibility, and prayer have been my mainstays in coping with my chronic ails.”

I can also say, “Coping is a new challenge every single day. It is not a destination, but an endless journey.”

As with all long and difficult journeys, a traveler will become weary. Daily living within a limited body, frenzied merry-go-round of medical appointments, and centering my activities around medication timing and peak performance are not only physically-draining, but emotionally depleting. I have moments or days when my personal expense of thought and energy is overwhelming. I crumble under the burden.

Pain woke me in the wee hours of Thursday. Darkness surrounded me in comforting silence and appropriate gloom. Laying still on my back, I counted the areas of pain in my body, giving a severity score to each one. Thinking about my hectic medical schedule and trying to fit the normalcy of life into “eye of the storm,” I grieved.

I grieved over the loss of what I was, what I am, fear of what I may become. It can be cathartic for me to acknowledge my grim realities, as long as I do not allow myself to get sucked into a vortex of hopelessness. Sometimes my bravery becomes bravado and I need to privately nurture my pain.

In those quiet hours, I (obviously);-) thought about my physical pain, my emotional pain, and future uncertainties. Sometimes the pain of living with chronic illness is too deep for tears, just a heavy, consuming darkness in my soul. Feeling alone, I mourned, thought, and prayed.

Then came the morning, a new day, a fresh start. 😉

“The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?” Psalm 27:1

Copyright © 2008

Pinned

I have two “invisible” (hidden…indiscernible) disorders, diabetes and Stiff Person Syndrome. Disguised in presumed health, I have social anonymity from the stigma of disability. IDDM and SPS are lettered jocks on a champion chronic illness team and I am their girl. Going steady.

Dates are plentiful…to my staff of physicians, the infusion clinic, the pharmacy. In preparation of an impromptu ER gala, I know how to accessorize. I have purchased a serviceable stainless steel chain and pendant, personally engraved, tagging me from the healthy herd. I am officially pinned as a chronic sweetheart.

As much fashion thought went into the design of medic alert jewelry as Good Will throw-aways. I do have a choice, the ever-visible bracelet or the belly-button-length necklace I can wear under my clothes. The screaming red logo is consistent with serviceable. Pretty is not an option. One problem, my illnesses and the lengthy list of my medications, not to mention the 800 hotline, require a tablet size pendant.

What I would give for a delicate gold chain, simple diamond charm, and my information intricately written on the back with the artisan flair of a rice picture carver.

“Adversity is the diamond dust Heaven polishes its jewels with.”
~Thomas Carlyle~

Copyright © 2008