SYNDROME MOMENTS 2007

December 26, 2007

In contemplating my resolutions for 2008, I came upon the following poem.  I hope I can strive to be a woman of strength in all areas of my life, not just for 2008.

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A strong woman works out everyday to keep her body in shape…
But a woman of strength builds relationships to keep her soul in shape

A strong woman isn't afraid of anything…
But a woman of strength shows courage in the midst of fear.

A strong woman won't let anyone get the better of her…
But a woman of strength gives the best of herself to everyone.

A strong woman makes mistakes and avoids the same in the future…
A woman of strength realizes life's mistakes can also be unexpected blessings, and capitalizes on them

A strong woman wears a look of confidence on her face…
But a woman of strength wears grace.

A strong woman has faith that she is strong enough for the journey…
But a woman of strength has faith that it is in the journey that she will become strong.

December 25, 2007

"For unto you is born this day in the city of David a Savior which is Christ the Lord...Glory to God in the highest and on earth peace, good will toward men."  Luke 2:11 & 14 KJV

"Hope sees the invisible, feels the intangible and achieves the impossible." ~Unknown~

Early morning was spent in quiet solitude.  I need alone time.  I recharge my spirit and rest my "continually-firing" body.

Early evening, my daughter and I went to a movie...a comedy/romance/adventure flick, a nice two-hour departure from life's difficulties.  We shared laughs and popcorn.  I have a serious weakness for movie theatre buttered popcorn.  I get a carb high just from the smell.

SPS liked the movie also, vicariously emitting heightened excitement through me.  The continual action and noise of the movie created an ominous "on the verge," edgy discomfort for me.  I took my "as needed" medication to enjoy the movie.  The chill in the theatre did not help my contracted muscles.  No matter where I go, SPS is an unwanted escort...obnoxious, attention-seeking, ill-mannered, a royal pain!?

Christmas...it means different things to people.  For me, it is a day that signifies God's gift of eternal love and hope with the birth of Jesus.  God's eternal love gives my life meaning.  Hope carries me when my I am too weary to go on.  Hope gives me courage with my daily challenges living with SPS.

I hope the shining star of Christmas touched your heart with promise and hope. (And buttered popcorn.)

Hope is the dream of a soul awake." ~French Proverb~

December 24, 2007

The Night Before Christmas - My SPS version.

December 23, 2007

Last minute Christmas errands and celebration preparations really get my SPS symptoms cranked.  The mall becomes bedlam the days before Christmas...the shopping-crazed in a retail takeover.  I had one errand to run.  Waiting for my medication to peak while mentally preparing for "out there," I took my walker just in case.  I usually only need it for extreme spasmodic episodes.  Mall parking was equivalent to North Pole proximity.  I was emboldened by pulling my folded walker by my side, at an impressive syndrome clip, to the mall entrance.  I got some strange stares, but you see everything at Christmas.

I like to plan my Christmas celebrations early, freeing everyone to pursue other activities on Christmas Day.  I woke the morning of our Christmas with painful tightness in my upper back, shoulders, and down my upper arms.  Excitement over sharing some time with my family and angst over food preparation was an interesting mix of symptom catalysts.

My focus on simplicity helps.  My guys like informal buffet-style munchies.  It makes it easy for me.  I can implement some already-made yummies from the deli combined with some homemade treats from my kitchen served on coordinating disposable tableware, compliments of Dixie.  This frees me to enjoy my family and alleviates some of the holiday stress.

A difficult lesson to relive and relearn with SPS is I only have so much energy reserves for the day.  I have to carefully plan and use those reserves.  A favorite saying of someone I know, "My mind writes checks my body can't cash."  My energy account did not bounce, but I depleted my reserves.  Bed was a very welcome end to a wonderful day.

December 19, 2007

I received an email  from an old friend.  She updated me on her life and wondered how I was doing, wanting to talk.  Others have shared losing friendships with the onset of SPS.  With a twinge of guilt, I realized I was the one who had neglected contact with her.

I called her.  We talked as if only days had lapsed instead of years..  It was a jolt to realize I had allowed the syndrome to strand me on a deserted island away from past friendships and developing new ones.

Maybe I should try to get back in the swim of things?

December 17, 2007

Today I had my neurologist appointment.  It is funny, in a tragic kind of way, as "normal" people will politely avert their glance from the physically-broken or mentally-challenged of society, we in the disabled community will do the same with our own.  "See no evil..."  I make it a point to try and make eye contact and smile in greeting.

He was sitting in the waiting room filling out papers.  He glanced up, looked again, and gave me a friendly smile.  He was a young man and quite simply...a hunk.  I would not categorize him in the "jock" category, a "Gold's Gym" muscle-shirt guy, but he exuded success from clear eyes and a confident demeanor.  A strong build was tastefully dressed in a plum dress shirt and coordinating striped tie.  In deference to winter weather, he topped his attire with a dressy black overcoat.

I felt a tug in my heart as I recognized the too familiar packet of papers a first visit requires, especially significant in a neurologist's office.  I gave him one of my website cards as I said, "I was diagnosed with a rare neurological disorder 14 years ago, Stiff Person Syndrome.  I was crawling on floors in spasm.  No matter what you may be told, there are many things that can be done."

He responded, "I am having numbness, weakness, and tingling on one side and now the other.  They do not know why."

His situation took me back to when I was diagnosed, my fear, how young I was to have my physical health jerk the rug of my future from under me.  Diagnostic possibilities for him broke my heart.

After my appointment, I was teasing the pretty young receptionist.  I said as I was leaving, "There is a hunk out there."

She smiled a huge smile of feminine appreciation and said, "I know."

He was still in the waiting room as I left.  His presence explained the giddiness of the young lady who calls patients back to the examination rooms, the keeper of the door.  

Who Knows?  Meredith Viera married Richard Cohen knowing he had MS.

December 16, 2007

Heightened emotions (good or bad) can cause my SPS body to do a Linda Blair, of Exorcist infamy, imitation of a 360-degree spinning head in time with Chubby Checkers' Let's Do the Twist...in double time.  There isn't an exorcism for SPS, just daily connected respites of medication.  The syndrome twisted version of The Twist may temporarily fade in a decrescendo, but the melody continually plays in the background.

Part of my coping involves relaxing from too much excitement or negative stress...a break from "doing."  I like a dimmed room softened with scented candles, easy listening music (A recent purchase of ocean sounds with soft music is a new favorite.), a funny movie, or just a nap.  Often, these things are as beneficial to me as my medication.  Renewal.

There was a time I could not be touched.  Touch was a trigger for violent body spasms for me.  For now, that trigger seems to be under control.  Another memory for my daughter's Christmas this year was full-body massages for the two of us.

I scheduled our appointment for last Saturday at an exclusive day spa.  It was short of heaven.  A dimly lit and warm room beckoned as we stripped down to our underpants and lay between sheets on the massage beds.  Soft music serenaded for the hour we were rubbed with warm lotion, soothing tight muscles, relaxing almost to the point of sleep.  I felt heavy and lethargic from the relaxation induced with the massage.

One thing SPS has taught me, take time to be still.

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Be Still

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"Don't underestimate the value of Doing Nothing, of just going along, listening to all the things you can't hear, and not bothering."
~Pooh's Little Instruction Book, inspired by A.A. Milne~

December 10, 2007

"Memory is a way of holding onto the things you love, the things you are, the things you never want to lose." 
~From the television show The Wonder Years~

Christmas frenzy can be a nightmare for SPS symptom triggers; braving cold weather, crowds, shopping, hustle-bustle stress.  Life has taught me priceless gifts come from the heart, the treasure of a memory.  I decided to give my son and daughter special memories this Christmas..."in spite of."    

One gift for my daughter was tickets for the two of us at the local dinner theatre, The Cabaret, for last Saturday.  Cabaret tickets include dinner from a choice of five entrees served prior to a live performance of Scrooge.  We dressed up for the occasion, two elegant ladies on the town.  SPS symptoms actually behaved for this special moment, except for muscle contractions from the freezing weather waiting for theatre omission and the always-present aches.

Our table was shared with two older ladies who were free dinner entertainment for us with their colorful gossip and cuisine comments.  During intermission, we ordered cheesecake drizzled in caramel for dessert.  My daughter leaned over, laid her head on my shoulder during the performance, and thanked me.  I could not buy the feeling she gave me. 

Dinner theatre is an event, a savoring of food and entertainment when shared with someone special.  We both loved the entire experience, adding another gem to our special memories cache.  

December 6, 2006

"I am my own woman."  ~Evita Perón~

Living with SPS, there are times when just coping consumes all of my time, energy, and waking thought.  I neglect being just a woman.  During the last year, I have been reconnecting with lost pieces of me and discovering exciting new ones.  I have discovered a wonderful indulgence...pedicures.

One of my syndrome challenges is foot care due a fixed, rigid, and immoveable lower spine.  I have gripped the bathroom vanity, sweat pouring out of my freshly-showered body because of the vicious spasmodic tremors rippling through my entire being as I try to clip my toenails with my free hand.  Applying lotion to my feet while sitting on a carpeted bathroom floor, an unexpected syndrome body slam knocked me backward in a real shoulder-on-the-mat victory for the always masked SPS villian (audible boos)...not a choreographed move on WWF.

I started my pedicure addiction as a paying guinea pig while my daughter was in cosmetology school.  Now that she is licensed, she likes me to come in to where she works.  Besides the luxurious decadence of my pedicure, (scented foot soak, nails clipped, lotion massage) I get a chance to visit with my daughter and do lunch at the mall food court.

Now I cater to my feminine vanity with toe polish.  My daughter chose a dark cherry-red for Christmas.  Nobody sees my flashy piggys, but I wiggle my jeweled set of "stay-at-homes" in tribute to the whimsical fun of being a woman..."in spite of."

December 4, 2007

Chronic illness or temporary health issues can equate to a prison sentence of life without parole or a lighter term in a maximum medical lock-down.  We, the afflicted, congregate in "general population" known as the infusion clinic.  I am serving a life sentence, convicted of first-degree SPS with one count of felonious insulin-dependent diabetes.  Shackled by cold-weather rigidity, I shuffled into the infusion clinic last Friday.

I had two interesting conversations...

He walked into the clinic on wobbly, unsteady legs.  Parking his cane, he chose a recliner across from me and sat down.  Making eye contact, I asked, "What are you in for?"

He smiled.  "MS."  It seems we had met quite some time ago.

He was a man in his prime, married with three children.  He told me his condition had been downgraded from remitting-relapsing to slowly-progressive, diagnosed in 2000.  Anyone with a devastating diagnosis remembers the anniversary the dreaded verdict was handed down...the day your life completely changed with a brief utterance from a doctor.  We discussed treatment options, dire predictions, and eternal hope.

With the empathy of one who lives with physical limitations, I watched him struggle getting the plastic wrap off of his fork and spoon for dinner.  Gallant and courteous, he waited for the nurse to come check on him before asking her to open the packet for him.  She left before he could get the lid off of his soup.  Again he waited for her convenience.

In spite of the obvious struggles of his body, he had such an untarnished spirit.  He radiated genuine kindness and happiness in the staggering weakness of his wake.  He was an inspiration.

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In the recliner beside me was a population regular...twice a week infusions.  She was convicted of multiple counts of serious autoimmune diseases, sentenced to five years on death row...fifteen years ago.  A very attractive petite woman in her mid-forties, she is assertive, vital, spontaneous, and fun..."in spite of."

We already know each other's dour medical history.  Friday, we talked as two women, sharing relationship problems within the confines of our never-ending health issues.

She has several years invested in a dead-end relationship.  I listened as she shared her loneliness, pain, and her fears.  After going through my divorce with all of the challenges of SPS, I could relate to her physical concerns, emotions, and marital situation.

Everyday life can be overwhelming living with a chronic illness like Stiff Person Syndrome.  My future looms with a morbid reality of negative possibilities, creating fear.  Fear imprisons.  Familiarity, at the expense of my sense of self, became a delusional comfort...marriage, a presumed security.  I devalued myself and unintentionally gave permission for others to devalue me also.  I heard the familiar theme in her story. 

Sharing my thoughts with her, she understood, knew she was enslaved by fear, seeking comfort in the familiar, no matter how self-destructive.  I ached for her, understanding the difficult choice...daring to risk or allowing fear to create complacency...security?

Brisk air once again locked me in syndrome's rigidity shackles on my exodus to the car.  I am humbled to walk among these giants of adversity...teaching me by example and uplifting me with understanding.

November 29, 2007

"We the willing, following the unknowing are doing the impossible. We have done so much for so long with so little that we are now able to do anything with nothing." ~Unknown~.

Sunday. I got into the movie theatre by myself...with the help of my trusty hiking pole.  I managed to cross a wide span of asphalt with inlaid textured tiles...asphalt with attitude  Meeting my daughter and her boyfriend, I ordered  popcorn and sodas for the price of two steak dinners or a prescription refill.  We watched Beowulf.

I enjoyed the Hollywood-creative-licensed epic.  On some level, I related to the larger-than-life hero, Beowulf, in his conquest against demonic monsters.  SPS symptoms and triggers morph from "normal" innocence to become hideous creatures I try to vanquish everyday with medication, effort, attitude, courage, and prayer.

Tuesday.  I did my six-lap walk, Nordic-style, armed with two hiking poles, my "just-in-case" medication, and a cell phone.   Empowered with Beowulf mentality, I trekked through the decaying bodies of brittle leaves scattered on the battlefield of winter to challenge an old SPS foe...two asphalt crossings.

Assessing the situation, I looked above the challenge, breathed deeply, and crossed both roads.  Emboldened with triumph, I managed 11 victorious crossings with only one retreat.  A vision of a broken arm at Christmas temporarily squelched my confidence with spasmodic tremors.

Wednesday, my mindset was of an accomplishment mode instead of conquering.  I did not extend my energy reserves to slaying asphalt dragons but concentrated on skillfully walking my six loops with quick and normal strides.  I was rewarded with another "can-do" moment.  With every accomplishment I feel deep gratitude.

Debbie The Conqueror, willing and unknowing, able to do anything with nothing...with occasional unpredictability.

November 26, 2007

This week finds my social calendar penciled in with three days of doctor appointments, Friday being the grand finale with my infusion.  Today I had my yearly appointment with my "lady" doctor.  After a look under my hood, she found my clunker engine to be in working order and gave me another 3,000 miles. Since my SPS diagnosis, there have been times when the impending scrutiny and climb onto the examination table were serious triggers for me.  It is an art to make cheerful small-talk during a pap test.

I was meeting my daughter after my "disrobe and probe" for her lunch break at the mall food court.  I found a way into the mall that does not require crossing the parking lot.  Thrilled at navigating the sidewalk and store entrance to surprise her (Alone!), her cell phone rang mine as I spotted her at another store entrance waiting for me.  She turned and saw me in the store and we both smiled at the significance of me already inside.

I thoroughly enjoy my daughter as a young woman, sharing her thoughts and experiences...and a love of chocolate.  She wanted something very sweet, not just a cookie, but a treat from The Chocolate Factory...a utopia for women where hormones and taste buds can unite in a carboholic feeding frenzy.  A person can have a major sugar spike just from the store's aroma.

I deserved a treat after walking from the food court to The Chocolate Factory.  Shiny floors, crowds of Christmas shoppers, the invisibility of glass walls frequently interrupted with store entrances created a vast and writhing onslaught to my syndrome sensitivities.  Chocolate was the next best thing to medication to smooth my frazzled nerves.

It is great to get into the mall solo, but what do I do once I am in there?

November 21, 2007

Tomorrow is Thanksgiving.  Tonight I decided to go to the store.  Big mistake.  There were three turkeys in the entire store and they were $18.00, pre-baked.  Contemplating what to do...buy the ready-made condor or go on a city-wide turkey trot...I spied some frozen turkey breasts in another bin.  These were a definite doable as they were oven ready...no cleaning the yucky stuff..  Somehow I always feel like I am violating the bird, post-mortem, cleaning out the cavity.

All of the procrastinators, including me and half the town, blocked aisles while wandering aimlessly lost looking for "traditional" Thanksgiving fare.  Another shopper clued me in she discovered everything in a display at the front of the store.  So much for looking for items where they normally go...just like home.  I did feel a moment's jubilation at nabbing the last bag of miniature marshmallows.

The rush, the crowd, the frenzied pace had me syndrome weary and looking forward to home.  The deli broccoli salad I bought was seducing my taste buds.  I should have the spooky background music accompany me throughout my day.  Nothing is ever easy or "normal."  Something sinister is always around the corner.

Getting home, arms chocked full of groceries (Whoever invented the plastic bags with handles was a genius.), I discovered my door would not open.  Laying down my loot, I tried all my keys with no response.  I made a couple of phone calls for suggestions.  Nothing worked.  The 24-hour emergency locksmith was out of town.  I prayed.

Hunger, fatigue, and frustration started working on my triggers.  Giving myself a calming time-out, I gathered up my haul to put back into the car.  I walked on my knees across the three-foot sidewalk to avoid a fall in deference to the danger alarm ringing loudly in my head.

Taking my prescribed emergency "just-in-case" medication, I drove to McDonalds, car heater blasting, to unwind, replenish, and warm-up.  Munching on a McRib, I talked on my cell phone and let time calm my angst. 

Going back home, I tried the door again and "Voila!" it opened.  I unloaded the car, stuffed my cupboards, and said a prayer of thanks.  

Another edge-of-my-seat episode of SPS reality.

November 20, 2007

“A healthy body is a guest chamber for the soul: a sick body is a prison.”  ~Francis Bacon, Sr.~

“The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself.” 
~Mark Caine~

My marriage ended earlier this year.  Out of respect for him, his family, my family, and me, I chose not to disclose the very personal issues behind the divorce in this forum.  It is still my choice to respect that privacy.  

Today, an angry and ill-informed individual could not differentiate between my earlier journal entries, facts, assumption, and purported dialogue.  After long and careful consideration, I decided it would be best for the community I hope this web journal serves to tell my feelings leading to divorce only from my Stiff Person perspective. 

We met when I was 34.  Two years of courtship had us inseparable and totally in love.  We married.  I was disabled from work with syndrome symptoms before our first anniversary, diagnosed a few months following.

He was supportive during that time.  I am tenacious.  Daily I struggled and worked through unimaginable symptoms and pain...privately.  It is my way.  I always made sure any public outings were preplanned around peak medication performance and minimal movement.  My family did not know the severity of my condition.

Anyone with an SPS diagnosis understands the identity annihilation that accompanies it.  I literally lost me: my sense of worth, independence, womanhood, physical abilities, future promise, everything...enshrouded with day-long spasms, pain, and fear.  I also felt enormous guilt toward my children and my husband.  I was broken, useless in my mind.  I felt undeserving.  I allowed myself and my feelings to not matter.  I literally allowed my importance as a person to die.

A physically-limited body becomes a prison.  The nature of SPS symptoms creates isolation.  Moving from Ohio to Colorado, I lost all personal connections except for my husband and young daughter.  Lack of mobility did not allow me to pursue my own life.

The move coupled with SPS created total isolation for me.  My home along with my body became a maximum security prison.  The deterioration of our relationship was not a spontaneous thing.  It was a gradual erosion.  The more I died inside, the more control he had.  He could not have had it if I had not allowed it.  I gave the keys of my life to my husband, unintentionally making him my jailor.

There is a phenomenon called Stockholm Syndrome where a hostage will feel love for the captor.  I lived to please.  As time progressed and we regressed, unhappiness grew inside me.  I always explained it away, trying to convince me. This deterioration created other serious problems in our marriage.  It was easier to pretend nothing was wrong.  I am a woman who cannot live pretense forever.  When I finally decided to take back my life, those other serious problems had become deal-breakers.

It was and is a frightening thing to take off on my own after 14 years of marriage, having SPS and diabetes at the age of 50.  Some think I am crazy, others brave.  I feel alive.

I mourn the grief, cherish the good, and wish good things for both of us.

"It is far better to be alone than wish you were."  ~Ann Landers~

“Begin doing what you want to do now. We are not living in eternity. We have only this moment, sparkling like a star in our hand-and melting like a snowflake...”  ~Francis Bacon Sr.~

A poem I had written several years ago expressing the feelings of my heart then:

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Need

Onerous duty serves until self-effacement becomes the final sacrifice.
Emotionally filleted, viscerally exposed.
Bleeding drops of surrender emit the fetid odor of dejected apathy.
The wounded scent attracts the ravenous hunger of the scavenger.
Watching with eager eyes of rapacious dominion, the familiar wait begins.
Enmity copulates.
The selfish need to possess.
The tragic need to please.
Aberrant love conceived.

©Debra A. Kemery
   June 2003

November 5, 2007

Sentenced to an SPS life without parole, I do what any inmate will do.  I study law hoping for an acquittal.  I found some laws I consider applicable to life with SPS.  With tongue-in-cheek irreverence...

Stiff Person Syndrome Rules of Law 

Newton's Law Of Inertia:

An object at rest will remain at rest unless acted on by an unbalanced force. An object in motion continues in motion with the same speed and in the same direction unless acted upon by an unbalanced force.

I can say with syndrome certainty that syndrome falls prove the law of inertia.  The unbalanced force is always contact with ground zero, e.g., concrete, floor, asphalt, and a body part.   

Murphy's Laws: 

1. Anything that can go wrong, will go wrong.
2. Nature always sides with the hidden flaw.
3. In nature, nothing is ever right. Therefore, if everything is going right ... something is wrong.

Pudder's Laws

1. Anything that begins well ends badly.
2. Anything that begins badly ends worse.

Stockmayer's Theorem

Flap's Law

Looking at Flap's Law with my SPS perception, inanimate objects have been a helpful prop or symptom obstacle, depending on the circumstances...sometimes both?  

Brought to you by the law offices of Murphy, Pudder, Stockmayer, and Flap.

November 3, 2007

Yesterday I "crashed" a party...SPS style.  I was invited to a baby shower.  Any social event can become spontaneously climatic when SPS is your constant escort...any moment of a day.

I was experiencing a very good day...a sure warning.  I was helping to set out refreshments before the guests arrived.  The cake was an adorable confection - a pink baby carriage decorated with flowers.  (It is a girl.)  A baby shower cake is "the" desert and a focal table decoration combo.

The meatballs and cheese plate were on the table.  I was carrying in the vegetable tray and dip, beautifully arranged on a crystal pedestal plate. (May they rest in peace.)  My foot hit an unseen cooler filled with soda causing my body to brake in an instant emergency stop, flinging my body forward in the dreaded familiar fall.  An airborne missile of the crystal dish of vegetables shattered on the floor scattering the contents.  

The thud of my body and the forced splintering of glass created an audible SOS rallying everyone into an impromptu rescue squad.  Managing to pick myself off the floor, I mentally did a physical inventory and concluded I was hurt but not an ER admission.

Mortified, I surveyed the damage to the seconds-before-perfection decor of the refreshment table.  Pieces of glass littered the floor and shimmered on the table.  Strewn carrots and celery were casualties in this SPS siege of the baby shower.  I was the bomb-strapped terrorist who pulled the cord.

I wanted to cry, not because of injury but guilt over ruining the shower for this young mother-to-be...I thought.  I managed to squelch sobs.  I was amazed I did not hit the table and send the cake somersaulting midair, mentally picturing the devastation.  Retaining its' place of honor at the table, the cake remained unscathed.  

Everyone was great.  Within minutes the mess was miraculously cleaned up, a new vegetable tray surfaced, and there was no evidence of the calamity...except me.  My knees hurt and I had injured my right arm, a cut oozing blood while some pooled under the skin in a bright purple-red color.  Luckily, the grandma-to-be is a nurse.  She gave me a look-see and party clearance.

Thankfully, the baby shower turned out to be a wonderful welcome party for the new mom-to-be, her precious unborn, and attendees.  

I redefined the term "party-animal."  

October 29, 2007

I am thankful I have insurance coverage for IVIg.  My infusions have given me a quality of life with SPS.  The Medicare Modernization Act of 2003 has had a negative impact on many in the chronic illness community.  Medicare mandates are often the guidelines for private insurance carriers.  Access to IVIg has become limited in what disorders are covered and cost re-imbursement continually decreased.  Millions of individuals have been negatively impacted with denial of care because of these changes.  Some die.

Chronic illness tends to mold some daunting individuals; people who channel their intelligence and energy to become informed patients and passionate advocates.  I have been in contact with two phenomenal ladies, each with their own health issues.  They are instrumental in the launch and running of a nonprofit organization to lobby government for changes for IVIg coverage, assembling an impressive group of advocates: The Alliance For Plasma Therapies

I am honored and excited to be a part of this group.  I pray I can be an asset.  

"The purpose of life is a life of purpose."  ~Robert Byrne~

October 27, 2007

Yesterday was my infusion.  Ongoing construction at the hospital takes away my "familiarity" crutch.  My check-in point has varied.  Entering a parking lot resembling a war zone, handicapped access is limited, even general parking.  I always equate my excursions with Stiff Person Syndrome to a starring role in an action flick.  The construction noise resembled gunfire.  I know how to hit the dirt.

My medical team and a few infusion regulars have become a social network for me.  We share personal details in conversation outside the realm of our hospital environment and afflictions.  Chronic illness already consumes enough of life.

Vitals taken and vein accessed, I sit back in my chair to contemplate the highlight of my day, what to choose for lunch from the hospital menu. Watching the slow rhythmic drip of immunoglobulin into my arm has become a routine for me since 1994...the days spent in an infusion chair.

After spending the day in idle conversation, reading, or snoozing (Not much else to do tethered to a drip pole.), I am released to re-enter the war-zone to find my parked vehicle.  Feeling a little shaky, a kind gentleman offers his arm to me as he escorts me to my car.

Sometimes treatment can be as difficult as a condition.  My IVIg infusions give me a headache and a heavy lethargy afterwards.  My evening is penciled in...rest, rest, rest.  

October16, 2007

I started working on my solo walking "out there" the beginning of this year, trying to re-teach my rebellious body how to move with the mindless fluidity prior to SPS.  Each ambulating venture is always an adventure into the unknown for me.  I practice mental flexibility with my rigid body. (Know when to hold 'em; know when to fold 'em.)  

I am trying a new walking trail.  My body was painfully resistant with syndrome rigidity on my first attempt.  I took a few laborious acquaintance laps, forgoing crossing a small asphalt road.  My body lurched when the surrounding hedge opened to a view of a swiftly moving canal. I had to back-track.  During one of my laps, a Labrador-sized poodle galloped toward me barking in excitement to sniff me.  I planted myself and managed to stay upright while "Killer Fifi's" owner called the Hulk Hogan-in-drag canine back.

My body responded positively to my second walk.  I managed to cross the small asphalt road twice.  Panic set it on my third attempt, so I chose to end this session of "SPS-crossing-the-road-101" with a double triumph.  Rhythmic crunching of my confident steps on the gravel path was in steady tandem with the swing of my hiking poles.  Mental energy succumbed to pleasant observation of the autumn-kissed trail and peaceful thoughts.

Walk three was a typical SPS paradox.  My steps were brisk and my walk was equivalent to a syndrome marathon.  I easily crossed the asphalt obstacle once.  Upon my second approach, my body rebelled.  I gingerly stepped onto the pavement.  Three steps out, looking like I was walking on thin ice, I retreated back to the safety of the curb.  Another day.

I made several laps back and forth avoiding the road.  Making my U-turns, I had to wait for my body to catch up with my mind.  I was determined to conquer some pavement paranoia.  It wasn't the road, but I walked several feet away from parking lot boundaries with an occasional hesitation.  I practiced pavement pounding for awhile, looking weird but feeling proud.

Today I struggled through four c-section laps.  I started out strong, crossing the small parking lot a few feet from the curb.  Again my body did a complete halt at the road.  Darkening clouds, a strengthening wind, and a swirling of air-blown leaves became sensory overload for me.  Sensory overload physically resulted in a deliberate shuffle with tremors of spasm and the tightening pull of increased rigidity.  I called the game, pleased with what I did do

I don't care why the chicken crossed the road.  I just want to know how.

October 13, 2007

"A keen sense of humor helps us to overlook the unbecoming, understand the unconventional, tolerated the unpleasant, overcome the unexpected, and outlast the unbearable." ~Billy Graham~

I have always loved to laugh, and I still do.  I find humor in SPS.  A sense of humor has proven to be an invaluable coping mechanism and a reminder I still have much in life to enjoy.  I made the following Halloween email greeting last year for my syndrome buddies.  I thought I would share it in my journal.

Halloween Greeting

October 9, 2007

"The young have aspirations that never come to pass, the old have reminiscences of what never happened. It's only the middle-aged who are really conscious of their limitations." ~Saki~

Living with SPS, part of my coping is a periodic assessment of my life.  This last year has been emotionally brutal in acknowledging some realities in my life and finding the courage to make difficult changes.  Some may attribute my decisions as a "midlife crisis."  I have to smile at that term in context with me.  I had a life-altering crisis at 36 with my SPS diagnosis.  Midlife is not threatening to me.   Old age is a goal, not a fear.

I am aware of precious time, the gift of a day, the miracle of a moment.  SPS is a constant reminder of the unpredictability and certainty of my own mortality.  This period has been my "midlife awakening."   I do not want a future someday to haunt me with "what if," and know the pivotal moment was now.  I have to be willing to dare.  I have to be willing to try..."in spite of."

"Decide what you want, decide what you are willing to exchange for it. Establish your priorities and go to work." ~H.L. Hunt~

October 5, 2007

I was given yellow roses when I opened the door.  I had not received flowers from a man in 17 years.  He handed the vase of delicate buttered-colored blooms to me with an appreciative smile.  Almost believing I was whole, I felt beautiful.

The soft glow of several scented candles emitted an atmosphere of intimate welcome, accompanied by a CD of romantic instrumentals.  Crystal water glasses, my good dishes, and cloth napkins decorated the table for the meal I prepared...ambiance. 

In deference to my syndrome triggers of rush and multi-tasking, I kept the meal simple: baked salmon, buttered new potatoes with chives, and peas with mushrooms (a nuke-in-the-bag microwave marvel).  From the creativity of my imagination (spooky), I made a raspberry dessert, a light and tasteful compliment to dinner.

Atmosphere and my dinner guest were fertile ground for bountiful conversation. Time ceased.  My socially drought-starved mind soaked up his drops of thought: witty, deep, philosophical, fun.  I responded to his interested reception...a volley of talking and listening.  Discussing a myriad of topics, excluding troubles, the mundane, or SPS, was scintillating. 

It can be easy to devalue oneself when afflicted with a physically-limiting disorder.  I had temporarily lost the core essence of me.  Dinner was one more affirmation of rediscovering myself as an individual, a mind, a person, and a woman.  As much as I enjoyed his company, he enjoyed mine.  We were the centerpiece of the table. I still have a lot of life to live and much to offer..."in spite of."    

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." ~Helen Keller~

"We will often find compensation if we think more of what life has given us and less about what life has taken away." ~Unknown~

September 30, 2007

"You are home all day."...such a simple sentence.  Loaded with implication, that statement can be very hurtful, whether intentionally or unintentionally.  

Implied:

You have nothing of relevance in your life so I do not feel guilty expecting chunks of your time or attention at/for my convenience.

I am superior because I work.  You have the luxury of being home all day where I am busy.  I expect your unquestioned accommodation to my schedule.

You are not needed or important...a social non-entity.  You need me, therefore you owe me.

=====

I envision the zoo, captivity to many of nature's magnificent creatures.  Forced into bondage for spectator amusement, they are well fed and cared for.  They sleep in apathy.  The confines of their existence steal the fire from their soul.  

My body is captive to a neurological disorder, SPS.  I did not choose the limitations of my life.  If given a choice, I would gladly trade my "stay-at-home" existence and body with anyone who ever uttered those words to me in condescension or misguided envy.  Disability is hard time without parole...24/7.  

"To know what you prefer instead of humbly saying Amen to what the world tells you you ought to prefer, is to have kept your soul alive." ~Robert Louis Stevenson~

September 25, 2007

Double standards and prejudices exist among all groups of people...even those associated with the disabled.

In having a discussion with someone close, the subject of dating and relationships came up.  I was discouraged from ever having another relationship with a man.  I thought I only had health issues.  The last I checked, I have a pulse?

The conversation shifted as to what kind of man I should consider.  Again I think, one with a pulse?  When I expressed I would consider someone with health issues (I should understand, right?), I was seriously discouraged about the problems associated with a relationship with someone with health problems.  (What did I miss?)

I think to myself, "Let me see, I am considered 'marketable,' but I come with enough healthcare baggage to constitute a Samsonite ensemble with a matching trunk, well over the 50 lb. airport limit."

I am biased, but I know a lot of available, warm, caring, intelligent, and fun men and women in the disabled community...with a pulse.

September 19, 2007

As a newly-single woman with a rare neurological disorder, Stiff Person Syndrome, I have some difficult considerations, possibly decisions to make in regard to my life.

I live in a very remote and inaccessible area of Colorado considering time and distance to a knowledgeable medical facility in a city...six hours to Salt Lake and five hours to Denver.  I am my neuro's "first and only" SPS patient...along with being "one in a million."  I could easily surrender my "specialty" status.

During my divorce and busyness in selling the house this summer, I realized just how isolated I had allowed my life to become.  I did not have one person to contact for help, outside of a neighbor's kind offer and my daughter's boyfriend.  My son lives 90 miles away.  What would I do in a medical emergency?

I always look for the high road but maintain a healthy perspective of my reality.  I have had SPS and diabetes for 18 years and I am getting older.  My neurologist is not always available.  I need knowledgeable and proximal care.

I can see me in ER, a frantic call to my internist and "Dr. Somebody", who happens to be on call, in a frenzied shuffle through my two-inch medical file educating himself and a disbelieving ER staff, on the fly, to hopefully stave off a code blue.  My neurologist is gone for one of his weekend retreats...a very real possibility.

I have massive medical files, several two inches thick.  I am thinking about getting all my medical records and insurance EOBs (explanation of benefits) leather-bound by years for an impressive personal library display in my home.  Deep burgundy or mahogany brown?  Definitely gold lettering.

Outside of choosing a matching table book of lab results to match my library, I have some serious things to consider, but the opportunity to decide.

September 8, 2007

Finally!  Freed from house responsibilities, I got to take my daughter on the vacation I promised her for graduation and her 18th birthday in May.  It was our celebration.  She is beginning her life as a young woman.  I am beginning a new life as a middle-aged woman with SPS.

As always, there is the airport security scrutiny of my carry-on, filled with an impressive array of medical supplies for my insulin pump and syndrome medications.  With an over-played sense of duty, one guard confiscated our sealed bottled water and had us watch as he threw it away.  Funny...I forgot to remove my pocket-knife from my key-chain and it made it through?  So much for the eagle eye expertise of airport security guard 007.

My daughter chose our vacation destination with two criteria: water and green.  We spent one day completely spontaneous...letting adventuresome whims take us wherever.  Whether laughing, exploring, gorging on decadent food, sharing secrets, or splurging on souvenir baubles, we thoroughly enjoyed our time together.  

We created a memory to cherish for the rest of our lives, deepening our bond from mother/daughter to woman to woman.

August 18, 2007

We closed on the house yesterday.  It is funny, in a tragic sense of the word, the only remaining link between my ex-husband and me was shared ownership of a house...walls, carpet, doors, and windows...empty.

I do not feel sadness over selling  the house...just the freedom of relief...daring to gulp sweet breaths of air after holding my breath too long.

Living with Stiff Person Syndrome, I have learned to live with continual readjustment and unpredictability, rebuilding my life after the loss of physical ability.  These daily SPS lessons in coping have helped strengthen me during the ending of my marriage.

Stiff Person Syndrome was not the cause of our divorce.  If anything, it contributed to the erosion of our relationship by creating a destructive gratitude in me, an apathetic compliance because I was "damaged goods," therefore lucky to have someone.  I devalued myself and my feelings, giving unspoken permission for him to do the same.  I lost me.

The closing of the house signifies the closing of a chapter in my life.  I hope the future is fulfilling and happy for both of us.

July 28, 2007

We did it!  My daughter and I moved.  I found an adorable condo for the two of us...small, SPS-friendly, and no yard-work.  She and I are so excited.  There is a tentative closing date on the house next month.    

The house already represents confinement to me, exacerbated this summer by court-appointed residency (responsibility) until the house sells.  My life has been so solitary, it is startling to realize I know no one to help me.

With the ever-present challenges of SPS, I have managed to maintain the yard.  Spasms and muscle aches are mowing companions.  I use the mower to blow off the sidewalk and improvise as a macho walker to get into the back yard.  My daughter and her boyfriend help when their busy work schedules allow.

I am thrilled at the accomplishment of "normal" chores.  With a bond of determination and hope, my daughter and I trimmed bushes and packed up belongings, sorting "stuff" into keep, sell, dispose, and charity.

We had some casualties.  My daughter weed-whacked her leg.  Repetitious work has created some tendonitis and hand numbness for me.  We both sported blisters.  The worst...I experienced my first fall in a long time.  

Walking through a dark kitchen, my foot hit a packed box.  My body went into a rigid fall.  I hit the wood floor in typical "tin-soldier" mode.  Somehow, my bent arms kept my head from cracking on the floor.  Jarred and stunned, I did a mental inventory for any serious injuries.  Outside of a bruised knee and elbow, the most serious complication is a faltering in my physical confidence.  SPS "thrills and spills."

Though physically challenging, accomplishment has been empowering for me.  I am grateful to God and thankful for a new home, the hopeful step of a new beginning.

"In the confrontation between the stream and the rock, the stream always wins - not through strength but by perseverance." 
~H. Jackson Brown~

July 15, 2007

In sorting through junk and massive paperwork to (hopefully) prepare for a move, (A future SPS saga on reality television.), I ran across a thought I had jotted down in 2003.  I wanted to share my thought in a web page expression.

Braveheart

July 9, 2007

When diagnosed with a rare neurological disorder like Stiff Person Syndrome, it is a given to want to know "How much time do I have?"  It was one of my first and biggest concerns.  I have had SPS and diabetes for almost 18 years.  I still wonder on occasion, "how long?" or just, "how?"  

I almost bought the farm yesterday.  In sinc with my quirky life, my "almost" did not involve SPS or diabetes but a strawberry twizzler.  I was visiting my mom who always keeps a stash of confectionary goodies.  She had a bag of unopened strawberry twizzlers on her kitchen counter.  A voice from the bag begged me to let the licorice out.  Always obedient to phantom sugar calls, I opened the bag.

Thinking of Mom, I took a couple of strips out to her.  Walking back into the kitchen, some of the candy stuck in my throat while swallowing.  I tried to dislodge it, but couldn't.  My airway was blocked.  In attempting to breathe, trapped air was a sickening rasp in my throat as my lungs screamed for air.

I managed to walk where my mom could see me and pointed to my throat.  She ran over, and in comedic hindsight?, was going to try to Heimlich me.  I bent over and she pounded on my back. (I know...a no-no.)  The pounding dislodged the candy so I could gulp some oxygen.

Mom looked at me and said, "Your back is really hard.  I don't think I could have done the Heimlich on you.  Is that part of Stiffman?"

It is strange how you can live with something so long, share with others, and still have moments bring it to a beginning awareness.  

While my body was frantically reacting to choking, my thought processes were oddly calm.  My thoughts were if this was "it."  "How long before I pass out and EMTs would arrive?"  "Would I suffer brain damage from lack of oxygen?"  "Could I dislodge the candy by throwing my torso against a chair?"

"Death by chocolate," sounds delightfully decadent.  What can you say about death by strawberry Twizzlers?

July 6, 2007

The house has been up for sale since April.  Nothing can test your stamina like being a woman alone with SPS and keeping a house "show-room" perfect for the many intrusive showings.  Show-room perfection extends beyond shiny bathroom faucets to include lawn maintenance.

It is always a Vegas bet which will putter first, me or our piece-meal lawn mower.  I am always amused at the deceptive visual of SPS-afflicted me operating this do-it-yourself repaired marvel of duct-tape-mentality, a poser of an efficient mower.  The mower and I have so much in common.  We both appear functional.  Clutching the mower's handle keeps me upright and balanced.  The mower can only operate with my guidance.  We need each other.

Our sputtering mower's performance did not improve with diazepam in the gas tank.  Replacing a dulled blade, badly corroded spark plug, and condemned air filter put some va-voom back into the grass whacker.  (I wish it were that simple and cheap to jump-start me.)

Rekindled life in the old Troy-built made the mower much more difficult to point and push, now cutting grass instead of laying it over.  Because of my SPS and triple-digit temps, I chose a morning to mow so as not to induce an SPS shake and bake.

Looking at my hands after I finished the yard, I had developed blisters on both palms.  I had felt burning in my hands, but SPS pain makes me oblivious to many "owies."    The left hand had a one-inch bubble that had busted open.

I studied my hands and smiled.  It was wonderful to have a boo-boo that came from hard and "normal" activity, not some injury caused by a crazy Stiff Person stunt.  (A spasmodic asphalt free fall resulting in a broken elbow, chipped tooth, and stitched head.)  I study the progress of my healing blisters with pride.

July 5, 2007

I bought groceries tonight.  Pre-SPS, grocery shopping was an inconvenient chore, part of my "normalcy" routine.  With SPS, grocery shopping is a coveted outing "out there" and a syndrome challenge.  Alone, it is an adventure of independency padded with pre-planned caution.

My youngest child is officially an 18-year-old adult. (?!)  My 30-year role as a mother has been recast to loving advisor and peer or an emotionally-hysterical onlooker...depending on the circumstance.  As I shopped, I recognized this moment as a sporadic SPS reprieve, a good day.  Without the restraints of being somewhere or something to anyone, I deeply inhaled the air of middle-aged emancipation and felt an emotional high.

I slowly savored the home furnishing aisles and indulged my woman's vanity with a leisurely perusal of toiletries.  How long had it been?  I was blessed with a long-forgotten gift of selfish time.  I chose to embrace it, squeezing everything this evening had to offer...awareness of myself as an reemerging fledgling, my response of simple happiness, and my change of self-reliance.

Accomplishment of this solo outing filled my heart with youthful abandon, encompassing me in the warmth of gratitude.  Life is good.

July 1, 2007

“Vitality shows in not only the ability to persist but the ability to start over.”  ~F. Scott Fitzgerald~

I will be 50 this year...a '57 model...a classic.  Looking back over my life, I realize it was a continual series of endings followed by beginnings.  The two hardest beginnings was life after the death of my oldest daughter and coming to terms with my Stiff Person Syndrome diagnosis...both a resurrection.

I am starting over in middle age with two serious chronic health issues.  It is sad, frightening, and exciting.  My emotions in coming to terms with all of the ramifications have been similar to a hyper super-ball gaining momentum in an enclosed cement room, all over the place.

We may have an offer on the house.

June 29, 2007

This summer I am the residential groundskeeper of our house until it sells.  Interesting combo: sharp implements, open yard, and SPS.  Accomplishment thrills me.  My sweat-soaked shirt is a trophy of triumph.  I always thank the Lord.

I cannot mow "at will."  It takes medication timing and a good day.  The mower is a demented walker with road rage for me.  My daughter is my partner.  We high-five one another, our raised hands cementing a bond beyond mother and daughter...a sisterhood of "can do" women on their own.  She thinks we should start a landscaping business.  I can picture us dusting rocks in a remote desert based on our "expertise."  So far, our only casualties have been a blood blister, a weed-whacker cut, and an aggravation of bursitis/tendonitis symptoms.

She and I trimmed bushes the first time for either of us.  I looked for Edward Scissorhands in the yellow pages without luck.  Our bush sculpting abilities lay more in the Picasso abstract vein.  Actually, we did very well.  I kept picturing me falling and impaling myself on the hedge-clippers.  Not a glamorous end to a bizarre life but a syndrome possibility.  I envisioned my epitaph, "She lived life on the edge and died trimming a hedge."

Pulling weeds with SPS can be a "trip."  I have to think how to get up from a crouch.  A frayed broom works as my crutch and prop.

Despite strained muscles and syndrome difficulties, I am ecstatic with the sense of pride in accomplishment.  My daughter feels it too.

June 24, 2007

So much has transpired this year, changes in my life, changes in me.  One aspect of my New Year's pact was to cut unnecessary stress from my life.  The relevance was proven to me.   I can only quote the serenity prayer:

"God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.