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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.

Making An Entrance

“Everybody loves you when you’re easy. . .Everybody hates when you’re a bore. . .Everyone is waiting for your entrance, so don’t disappoint them.” ~Sarah McLachlan

In a conversation with an SPS friend, their spouse had developed anxiety issues when out of caring range for my afflicted friend. It had become a comfortable routine for this individual.  A future solo trip for my friend triggered some anxiety-induced health issues for the spouse.

The topic of this conversation turned toward Stiff Person Syndrome, the various triggers, the security and comfort of routine.  I had been experiencing some increasing anxiety when leaving my home.  I had been aware of opting for the serenity and calm of home more frequently than I had in the past.  I decided it was time to reinstate more frequent “out there” experiences beyond my new normal routine.

Wanting to visit different churches on occasion, I thought Sunday would be a good time.  I could not locate choice #1 so settled for choice #2.  Walking well with my surrogate walker aides, I made it to the front door…unscathed.

Unprepared for the step up into the sanctuary, I did a first-in-awhile SPS fall into the foyer.  Luckily I was able to catch myself with extended arms instead of the “tin man” fall with full impact on the head.

Worried about a possible tear in my dress jeans, I look up from my on-my-knees vantage to the group gathered in the foyer.  Fear, astonishment, and dismay were frozen expressions on all the faces.  I smile from my crawl (prayer?) position, smile and tell them I am alright.

Managing to stand, I extend my arms and say, “I had to make an entrance.”  The humor melted the cold horror into warm welcoming smiles.  Looking at the small group in the sanctuary compared to the large number of cars in the parking lot, I ask, “Is this all the people who come here?”

I was informed this was the Hispanic sanctuary and was given a partial escort to the main English sanctuary.

Without event, I take my seat and mentally assess injury.  My neck and shoulder muscles were sore, most likely from being rigid during the fall.  My knees ached a little but my favorite dress jeans were undamaged.

Relieved, amused, and thankful, I realized…I can fall in other languages!

Copyright © 2012

Lessons From Josey Wales

I watched Josey Wales the other night. From my SPS perspective, I vividly remember the date my normal life was violently destroyed by total Stiff Person assault. With diagnosis, I buried my former life in a daze of disbelief and grief, like Josey buried his slaughtered wife and son.

In a daily fight for some kind of life, I am an SPS outlaw.  I can relate to being hunted down, ducking danger, and waging defensive counterattacks while continually planning survival strategies, yearning for my former peaceful normalcy.

With a satirical parallel to my life with SPS, some of Josey’s quotations had significant lessons in coping as a chronic illness fugitive.

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Josey Wales: Now remember, when things look bad and it looks like you’re not gonna make it, then you gotta get mean. I mean plumb, mad-dog mean. ‘Cause if you lose your head and you give up then you neither live nor win. That’s just the way it is.

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Josey Wales: Dyin’ ain’t much of a livin’, boy.

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Carpetbagger: Your young friend could use some help.
[holds up a bottle of patent medicine]
Carpetbagger: This is it… one dollar a bottle. It works wonders on wounds.
Josey Wales: Works wonders on just about everything, eh?
Carpetbagger: It can do most anything.
Josey Wales: [spits tobacco juice on the carpetbagger’s coat] How is it with stains?

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Quote #1 – Attitude. “If you give up or lose your head you neither live nor win.” I need to focus, think with my mind not my emotions, & stay determined because “that is just the way it is!” 🙂

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Quote #2 – Perspective. The only guarantee life equally gives everyone is an unknown day of death. Fate dealt me a bum hand, but I choose to stay in the game. (Bluff?) Life is still a gift. To live each day like I am dying “ain’t much of a livin’.”

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Quote #3 – Humor & ‘carpetbaggers.’ Humor is vital to my well-being. I have a dark sense of humor about SPS that leaves some scratching their heads. Laughter diffuses the negative SPS grip on my life.

Carpetbaggers–opportunists who have a ‘miracle’ cure, whatever it may be? Really? I went to one of these miracle docs & deliberately messed with him a little. He became very angry at being exposed. How well do your pricey wonder bottles work on BS stains?

If only SPS would make peace with me like Fletcher did with Josey–just ride off to Mexico and quit stalking me.  Until then, don’t lose my head or give up.

The other evening, a body-jerking spasm gripped me in an unexpected assault. I fell against the patio wall, dropping some groceries, my hiking pole, but avoiding a tangled fall in my butterfly bush.  Shaken, I managed to regroup, leaning against the entryway as I shuffled the few remaining steps to the front door. Mentally I heard an appreciative chuckle whisper “whupped ’em again, Debbie”

Spitting dry fear out of my mouth,  I acknowledged with “reckon so.”

Copyright © 2012

The following movie trailer gives a brief idea of Josey Wales. While Josey was motivated by revenge, I am motivated by living.

Not Old Enough

January 2, 2012

“There must be a day or two in a man’s life when he is the precise age for something important.”
~Franklin P. Adams

Back in “my day,” turning 18 was epic–old enough for emancipation from parental rule, to legally buy and drink 3.2 beer, and to vote. Twenty-one was eagerly anticipated by the 3.2 beer crowd wishing to try the harder things in life. Overachievers.

In my early 20s, talk of retirement seemed an eternity away and pointless. In retirement visions, I pictured myself tanned and stylin’ on a tennis court with a handsome senior man, without wrinkles, firm, and athletic. Imposed early retirement was a brutal reality smack-down with my SPS diagnosis at 36. I lost my dream of the tennis court and celebration for turning 65 with a party from my co-workers, complete with presents.

The next milestone was qualifying for an AARP card and all of the membership advantages of turning 50–once again getting ‘carded.’ Deja vu, with beginning wrinkles.

I received some information in the mail about a very interesting social/intellectual/exercise program for individuals 55+…not quite ‘old enough.’ I am going to check into it anyway. Just a minor technicality, I turn 55 this year.

I am not old enough to be racking up the equivalent of cha-ching bonus points on a prescription card, watch older women walk effortlessly in a mall with envy, or have my social calender filled with doctor appointments. Nobody is.

Chronic illness or rare disease is non discriminating regardless of age, ethnicity, beliefs, or gender. NORD, (National Organization For Rare Disease), is our change.org.

Copyright © 2012

Winter Finals

December 26, 2011

“My school was so tough the school newspaper had an obituary section.”
~Norm Crosby quotes

SPSU, Stiff Person Syndrome University, is equivalent to Harvard graduate school if diagnosis was classified as a medical “School of Hard Knocks.” I won a full scholarship with my very high antibody score and impressive EMG results. My final clinical evaluation cinched acceptance.

There are a few fine print guarantees:

1) Graduation upon death, but with highest honors.
2) Lifetime member of the SPSU sorority, Delete Yo *Gamma, DYO.
3) 24-hour homework every day.
4) Year-round finals and labs.

This year, my labs were my year-end finals. Back-to-back, different tests, several different docs, some new courses–my stack of test results and orders got thicker with each week. Anemic by my last blood workup, the tech sported a DNA splattered “Got Blood” shirt, smiling at me with pointed eyeteeth. I was delirious from all the cramming and lack of blood-flow to the brain.

All of my results are in. I aced most of my tests, registering in the coveted and prestigious “normal” range or close. With SPS, physical mediocrity is a coveted Dean’s Award of healthy. I lost privileges to the SPSU Christmas bonfire, but I have enough scars from previous scorchers.

I am on a coveted Christmas break until the first of January, when classes resume…

“I was thinking about how people seem to read the Bible a whole lot more as they get older; then it dawned on me – they’re cramming for their final exam.” ~George Carlin

Copyright © 2011

*GABA is an acronym for gamma-Aminobutyric acid, the chief inhibitory neurotransmitter in the central nervous system. My body’s braking system derailed with a demented mind of its own with Stiff Person Syndrome. Girl gone wild without spring break?

The SPS Circus

“We are in the same tent as the clowns and the freaks-that’s show business.”
~Edward E. Murrow

September was my fall tour, visiting all of my specialists in four weeks with a grand finale–my scheduled booking at the oncology clinic for my monthly infusion of IVIg. Complimentary concessions included crackers and juice to toast my yawner of a performance due to a double dose of pre-poke Benadryl.

Before my Benadryl rendition of Goodnight Sweetheart, I tried some impromptu stand up or “biz” talk with the other acts in the backstage waiting area. Several have been on the healthcare tour too long. Road weary, homesickness for the life left behind was visible in their tired expressionless eyes.

My SPS circus…a Looney Toons unrehearsed and unscripted saga. Stiff Person Syndrome, a rare diagnostic albino elephant fills the small tent while dancing monkeys of thyroid and type-one diabetes disrupt the animal entourage with their unpredictable antics of hypos, fatigue, and annoying the elephant.

I am the one-person star of this show, an unskilled trapeze artist swinging dangerously in the spotlight without a net as the ringmaster (the specialist of the moment) thrills onlookers with a booming voice revealing the mysteries of my lab work. All is well. I execute the transition with grace and feigned skill to applause.

Quickly I donn a clown suit to juggle symptoms and meds for my multiple diagnoses as I try to remain balanced on a unicycle of normalcy. Losing my rhythm, I fall to be drenched by the stalking midget of failure in continual pursuit with the dancing monkeys.

My fall tour was a success. All my labs were good with no mishaps in my performance even though unicycle balance is often compromised in daily practice. My ringmasters were very pleased with my overall performance.

In my daily juggling practice, I notice the addition of a couple of small batons (symptoms) not familiar to my routine. As my labs and follow-ups were good, there wasn’t much concern. As I told my endocrinologist, I do not want another dancing monkey (underlying diagnosis) to sneak in while we are focused on the elephant. An ANA, antinuclear, antibody test was ordered and it came back positive.

Many healthy people will have a positive reading, but my immune system is not healthy. It will be weeks before my booking with a new “ologist” for further exploration of this development, so in the meantime–I will continue my daily unicycle practice avoiding the midget in pursuit, keeping the dancing monkeys at a distance, while calming the albino elephant with meds.

On with the show!!

Copyright © 2011

SPS – Living As Wile E. Coyote

August 7, 2011

Chuck Jones said, “Wile E. is my reality, Bugs Bunny is my goal.”

Diagnosed with Stiff Person syndrome, I am living a Looney Tunes reality as Wile. E. Coyote. The ever unpredictable efficiency of “Acme” prescriptions, situation or emotional stimulus, combined with my personal Wile. E. cunning is a potential recipe for “Th-th-th-that’s all Folks!” My only hope is to capture the ease and speed of mainstream living as the Road Runner, completely resistant to all dangers and evil.

SPS is so hard to explain, the triggers, symptoms, spasms. This cartoon captures some of the fearful uncertainties of some types of syndrome spasm, minus the frozen full-body rigidity. And in every cartoon, Wile. E. falls–several times.

Swallowing the earthquake pills, similar to stimulus overload for me, Wile. E. demonstrates the trepidation, unpredictability, and strength of Stiff Person Syndrome spasms…with the ending death-defying fall. The Road Runner, “normal” humanity, is unaffected by stimulus overload.

And like Wile. E., I will appear in another episode of attempt vs. the odds. Persistent.

Copyright © 2011