December 31, 2006

New Year's Eve.  I celebrated quietly with my husband, daughter, and her boyfriend with pizza.  My cold is is a forgotten memory.  Another chapter of my life is completed.  In thankful retrospect, 2006 was a year filled with blessing and memories worth reliving..."in spite of."

December 27, 2006

I frequently trickled saline drops down my nose while mopping my snoot with paper towels.  Kleenex just weren't up for the task and a tablecloth wouldn't fit in my pocket.  Running a cool-mist humidifier at night gave a dewiness to my sallow complexion. Looking through slits of pain at my husband intently studying me, he commented, "You don't look good."  Having a chronic illness requiring prescription medication, I cannot self-medicate with OTC relief, possible adverse reaction.   

Fate decided the flu/head cold/virus crowd wasn't enough.  My body decided to have one of my twilight "ladies' days?"  (I am thinking "the curse.")   The pain in my head overrode any discomfort of cramps.   The previous days' Christmas activities induced syndrome back activity for which I took one of my extra "as needed" meds.  The party kept growing with unsavory crashers.  

Attempting to SPS navigate the dark to take my 6:00 AM meds, I grab the bedroom door to physically and mentally orient.  My husband asks me what I am doing.  (Always a loaded question.)  I explain about my morning meds.  Upgrading my condition from crappy to lousy, I tell him I am experiencing weather fronts at both my North and South Poles.  His laugh follows me out the door.

December 21, 2006

I have rediscovered there is something worse than being diagnosed with Stiff Person Syndrome...SPS with a cold...days before Christmas.  Mentally I hear the grim forecast - We have a severe nasal front moving in, sneeze and sore throat advisory.  Nasal passages are closed.  We repeat, "Nasal passages are closed."

I suspect infiltration of this current virus is a result from my infusion last Friday.  I have to go through ER to register. (Where every sick individual within driving distance congregates.)  I can visually imagine the thick germ cloud hovering in the air and over the hallway carpet, rug fibers to catch and hold the descending germs.  Vacuuming scatters these little invaders, allowing them to be airborne once again.  What happened to good old linoleum; a surface you can daily disinfect?

My pointer finger selects the the fourth floor at the elevator.  How many contaminated fingers touched "my" elevator button.  In infusion, one nurse is recovering from the nasties while a patient is wearing a mask.  Is he avoiding possible contamination or preventing a spread.  He is sitting next to me.

Over-the-counter (OTC) medication is not an option because of my kick-butt prescriptions - toxic reaction.  It is suggested to me by another syndrome friend to try saline drops for my nose.  She tells me saline is like ocean water.  Going out into 20-degree snow and ice to buy saline drops, I envision flying to an isolated beach in Hawaii and inhaling the Pacific instead.

I am not a "crafty" person.  I do wonder about the possibility of taking soggy Kleenex and making little snowmen to put into the stockings of individuals on my "bad" list.  My own stocking worries quickly squelches that idea.

It seems SPS and diabetes invited a guest for the holiday, Mr. Common Cold.  I wasn't consulted and I am the host.  Hopefully, it will be a short stay.

December 16, 2006

Yesterday was my IVIg infusion…one day every five weeks.  The fourth floor infusion clinic of the hospital is familiar, an infusion is routine.  The clinic nurses have become social acquaintances through the years.  We know names, children, and trivial details of one another’s lives.

I pick a chair and wait for the preliminary blood pressure and temperature reading.  Vein scrutiny follows, searching for easy accessibility.  Sometimes it is a drought for a hungry vampire.  The veins hide.

I assure my nurses.  They are very sensitive to their patients when they have to poke more than twice for a gusher.  I only find the vein search slightly uncomfortable, not painful.  It is probably a combination of living with syndrome chronic pain and daily pokes having diabetes.

Nurse #2 comes on the scene after Nurse #1 surrenders after two attempts.  Number 2 believes she has found a winner in my right hand.  She tells me she needs to straddle my knee when she pokes.  I tease her about a lap dance.  She chuckles.  Keep in mind, she is standing the entire time.  Wrapped in neon-colored CoBand, I look quite festive.

My infusions take anywhere from 4-6 hours, depending on several circumstances.  I usually get lost in the paper imaginings of a hopefully good book.  Sometimes I enjoy conversation with others from the chronically-ill community…ailment show and tell.  From young and virile to elderly and frail, chronic illness is often not physically discernible.  I study the faces of those who enter the Infusion Clinic.  I see resignation and apathy in some.  Some are unsure.  Others are upbeat and fun.  I am studied with interest, inquisitiveness, or ignored.

I feel the cold liquid enter my veins, watch the steady drip of the immunoglobulin from the bottle into the tubing into me.  Gratitude for a therapy that gives me a quality of life struggles with my feelings of inconvenience and dependence.

Ordering lunch…a highlight of my day.  I have the menu memorized but always deliberate over my selection.  The 2-inch square of chocolate cake is good.  I feel I deserve a dessert, earned chocolate.

The minutes have dragged until my infusion is over.  Another blood pressure check, temperature reading, and neon-colored bandage and I am free to go.  The infusions go well but they always wipe me out.  I sleep the deep sleep of a drug-induced Snow White.  Since my infusions are always on a Friday, supper is an easy burger and fries.

December 12, 2006

I love Christmas.  Stiff Person Syndrome is a grinch.  Trying to do the hustle and bustle, without busting anything, can be a challenge.  I have previously shared multi-tasking and a frenzied schedule does not mix well.  Combine those triggers with emotional upheaval and you have SPS combustion.

Yesterday was a culmination of overload on all three levels.  The final straw was taking my graduating daughter to check on college funding.  My zealous accomplishments of the previous days caught up with me.  My body went into SPS overdrive.  My temporary physical reprieve ended with severe spasm and immobility entrapping my body into painful arching, rigidity, and continual spasms with attempted movement…movement equivalent to inchworm creeping.

With these episodes, the best thing for me is to take a nap, rest my easily exerted body.  Today rest was not an option as this was the only time my daughter had available for the college funding appointment.  I took my “extra prescribed medication if needed” and it did not help much. Worry about keeping the appointment blew on the embers of my symptoms, keeping them ablaze.

Love always finds a way.  I feel secure with my daughter.  We made it to the appointment.  After the symptom catalyst of the appointment was resolved, my physical condition improved.  Another day in my life.

I loved you before,
I know I love you more,

You nurtured me young,
I shall nurture you old.

I know you feel pain,
And its such a big problem.
I look up to you mom,
I know you will make it work.
Your eyes are still wild,
Like your body sometimes is.
Spiderwoman on the wall,
Who can cling best of all?

My mommy can,
best lady of them all.

October 15, 2006

Living with integrity means:

• Not settling for less than what you know you deserve in your relationships.
• Asking for what you want and need from others.
• Speaking your truth, even though it might create conflict or tension.
• Behaving in ways that are in harmony with your personal values.
• Making choices based on what you believe, and not what others believe.

(Sometimes speaking my truth does create conflict and tension, simultaneously.)

October 14, 2006

A day of remembrance and reflection.

My melt-down came the following morning.  I opened my eyes to an empty crib, an open diaper box waiting for the next change that wouldn't come, and neatly hung, frilly dresses that would never be worn.  Breathing was gulps of air greedily snatched between "from the gut" sobs.  

Time tempers pain. Casey's life and death taught me many lessons.  I was given a crash and burn course in the harsh realities of incurable illness, loss, social misunderstanding, and dealing with the medical community.

Casey was one of my greatest blessings.  Sharing her short life, I learned to live in the moment, appreciate the simple, and understand unconditional love.  She gave me strength, strengthened my faith, and taught me hope in hopeless situations.  I learned life goes on when I think it has stopped.

In remembrance of this day of loss, I celebrate the goodness of life.  I celebrate Casey.

October 9, 2006

Unbelievable...and so exciting.  Today, I managed to get into two places without my hiking pole...solo flights!  In honest admission, I didn't traverse any parking lots, but this is still cause to celebrate.  I parked in front of the beauty school to get a deep conditioning for my hair.  I did balk at the mirrors lining both sides of the room, giving the illusion of infinity, troubling with syndrome perspective.

There is a small grocery that has a parking place by the side door.  A brick wall offers solid visual and tangible comfort.  Inside, the aisles are narrow, not wide and glassy.  I squelched a brief panic in my throat at the entrance.  Returning to my car, I inwardly celebrated.

September 29, 2006

I love water therapy.  The pool is a comfortable 91 degrees.  There is a handrail to hold and it is fun time with my mom.  All of the patrons are either elderly, several knee victims...distinguished by a visible scar or limp, or physically-challenged in some way.  It is a group I am comfortable with.  I belong.

The hot tub soak, afterwards, is delicious decadence.  I am thankful for the medications/treatment that have allowed me to get to this place where I can physically work on things Stiff Person has stolen from me.  It is empowerment.

September 20, 2006

So much for my previous entry.  The pendulum always swings back to syndrome mode.

My daughter had her wisdom teeth surgically removed today.  I was "mentally" prepared as I knew the layout of the oral surgeon's office.  I was with my daughter so I left my hiking pole in the car.  Everything was a green light.  I was confident.

The oral surgeon suggested I pick up my daughter's prescriptions while he was removing her teeth.  Panic replaced confidence.  My pole was in the car.  My mental strategy evaporated with this change in plans.  The hospital pharmacy required crossing a parking lot...unexpected unknowns equals syndrome unraveling.

I manage to get outside the door.  The only thing between me and my car was a sidewalk.  It might as well have been a river.  My body tensed with syndrome rigidity.  The most simple things require war-time planning.

I left my morning caffeine fix of a diet soda on a waist-high light.  I draped my daughter's coat over my purse and held it straight down...a residual memory from pre-diagnostic days as to how to carry something while "uptight."  I awkwardly made the 3-4 steps to my car and unthawed.  Depositing my armload of "stuff," I grabbed my hiking pole to go back for my "must-have" soda.

I pulled around the back of the hospital to the pharmacy to retrieve my call-in prescriptions and my heart sank.  I was expecting a parking lot.  The destruction of the parking lot and ensuing chaos of remodeling assaulted my syndrome sensitivities with additional angst.  Construction site netting draped the entrances of the hospital with the obstacle of unfamiliarity and challenge.

Assessing the situation, I found an entrance I thought I could possibly do, in part to an elderly parking lot guide who was standing beside my entrance of choice.  Knowing his presence was proximal, I made it into the pharmacy.

As I exited, my escape plan disappeared with the absence of my elderly parking guide.  He had moved quite a distance from me.  I only had to cross a double lane of asphalt to reach my car.  My body rebelled.  Trying to implement self-trickery, the construction workers began welding and jack-hammering.  Amid the sparks floating by my sleeve and the rumble of the noise, I was reminded of a Freaky Friday Super Bowl half-time show.  My clothing didn't malfunction, I did.

Finding quirky humor in my predicament, I one-stepped, slid the other foot to join while attempting to divert my syndrome attention by singing the spiritual fitting for the situation, "Nobody Knows The Trouble I've Seen."

Reaching the sanctuary of my car, I had to laugh.  Nothing is ever simple or routine.  I live a personally-scripted action thriller every day.

September 12, 2006

I look so "normal."  So often I will hear, "You don't look sick."  I am not sick.  I have a disorder that is physically challenging.  The only give-away is when my body does a stiff person trick.  I have become an expert at healthy illusion...a David Copperfield of SPS.  Sometimes, the joke is on me.

Today my mom and I decided to sign up for pool therapy.  We had to do a physical assessment before we could join.  Today was an exceptionally good day...an unbelievable day.  I am occasionally gifted with physical glimpses of when my body actually remembers to work like it did before, effortlessly and smoothly.

My assessment did reveal the inflexible range of motion in my limbs and torso, but it was a good assessment compared to other moments.  I had to smile.  What a traitorous body.

August 30, 2006

Today, I got checked out...at the age of 48!

I had ordered business cards for a project of my daughter's.  I was excited about her reaction when my husband drove me to pick them up.  (He wanted to go along.)  In my childish exuberance, I wanted to get a card holder to surprise her.  Now, Hubby did not like the tag-along as he wanted to just go home.  With a couple of attempts at feminine "Please," he just gave in just because I am the woman he was going home with.

He pulled up to the entrance of Office Depot to let me out at the door...avoiding the syndrome phobic cliché of paved open space.  Since this stop was not in my mental preparedness for this errand, I felt the familiar beginnings of a slight tightening of my torso.  I gave myself a mental pep talk as I took my hiking pole in hand and traversed the 4-5 steps to the door.  "Home-free," I thought.  I still haven't learned not to think.

I asked the lady at the checkout where the cardholders were.  Inwardly my bravado sank as she said, "Aisle 25 toward the back."  I had bypassed the security of obtaining a shopping cart and was left to solo the polished aisles, hugging the sides, until faced with a cross-over to another section with only my hiking pole.

The shiny reflection of the glassy aisles magnified my syndrome perception of distance and danger...a fragile snow bridge on Everest.  Panic escalated as I made my way to the no-man's land of "Aisle 25 toward the back."  Finding a plastic smoky-gray holder, I only had to make my way back to the front of the store.

Clutching my prize and navigating the maze of mocking electronic gizmos, software, and paper, I made the last hurdle of an open aisle to the cash register.  I realized I could have picked up some copy ink but my courage was spent.  I was still determined to make it out the door without a very tempting cell phone "SOS" to my husband.

While the man in front of me was checking out, I was planning my escape strategy from the cash register to the door...a flyer stand, cement pole, two steps, door.  I made it out the door.  Three large cement poles provided tangible vertical support as I gauged a syndrome friendly path to a bricked column at the store front.  

My husband pulled up as I made the final couple of faltering steps to the safety of our car.  My husband looked at me and smiled.  "A lady with two canes left the store before you came out.  She noticed you and was watching you leave the store."

Okay.  My first sentence to this entry was misleading, but I was checked out.  I had to smile.  I do the same thing to others with movement challenges...a mental comparison, a disability show without the tell.  In looking at The Invisible Disabilities Advocate mercantile, I noticed a shirt that says, "I do my own stunts."  I will have that shirt.

August 29, 2006

It was only a child's birthday cake.  My obviously homemade cakes are a labor of love to celebrate another milestone year in a cherished life.  I would never had made a living at cake decorating "pre" syndrome.  Now cake decorating has an undercurrent of menace...a likely confectionary debacle.

Icing, like makeup, can hide imperfections and accentuate positives, if applied properly.  There lay my challenge...proper application.  Three hours into my powdered sugar struggle, Mr. Stiff decided I was doing a little too well, be it slow.  It came down to needing exact precision to outline parts of the cake...a steady hand.

It was all the catalyst necessary to have my back go into lockdown, my neck and shoulders doing a syndrome rendition of dueling banjos with my lumbar rigor mortis.  In trying to keep a steady hand,  my body did accompanying shivering spasms to make outlining the eyes simulate a 10-second, live or die, disarming of an active atomic bomb.

During my symptom chaos, I could only think one thought...It is good I am not a surgeon.

August 4, 2006

SPS/SMS not only affects me, but those around me; those who love me.  I am aware of that.  Once in awhile, I get a reminder just how much my family is affected.

Recently, in the middle of the night, my husband awakened me by holding me too close and too tight.  He was awake and troubled.  He had a nightmare and shared it with me.

We were taking my mom to Las Vegas to meet my brother who was flying in.  We were staying at the Belagio.  (If you are going to dream, might as well make it first-class.)  My husband took a nap while my mom, daughter and I went out to explore.  When he awakened, we hadn't returned and he was worried.  Three hours later, the ambulance dropped me off.  I had fallen, skinning my knees, blacking my eyes, and bruising my brain.  (I wondered at the subliminal message of a brain bruise?)  My husband felt guilty because he believed I would not have been hurt had he been with me.

After I got past teasing him of a Vegas ambulance taking me to a casino hotel instead of a hospital (Though the treatment might be better?), and some comments about my brain bruise; I seriously dissected the meaning behind his dream's symbolism.

He must feel an enormous protective responsibility toward me.  When he wasn't vigilant, I was hurt, creating guilt.  Unspoken worry is a constant.  I see it in his eyes at times.

Chronic illness creates coping issues for the afflicted and the affected.  I endured his overly-protective cuddling for the remainder of the night...comforting his fears by holding me.

July 31, 2006

I was feeling good, cocky good.  I wanted to go on a familiar hike I have dubbed "Butt Hill" and take a Subway picnic to eat afterwards with my husband.  I planned my medication timing with our hike.

We started up the familiar terrain when my back let me know my previous confidence was a sham.  Sometimes I get angry at the syndrome, determined I will "in spite of."  This was one of those times.  I can shake my fist in the face of my adversary, but he can definitely make it a bloody 10-rounder at my expense.

My gait was a painful shuffle from the turtle brigade.  Geriatric rehab patients would have whipped my butt, but I sweated through.  My blood sugar plummeted, requiring a raisin fix and insulin pump readjustment.  Female cramping decided to tango with syndrome spasms.  The heat caused the raisins to sit heavy on my stomach creating mild nausea.  I should have thrown in the towel, but there are times I stubbornly refuse.  The muscle pain, burn of labored breathing, pounding heart, and profuse sweating reaffirmed a glorious truth to me...I Am Still Alive.

We reached the halfway turn-around.  Euphoria of accomplishment helped with my physical discomforts.  I checked my blood and was sickened to see it had dropped even more.  This required another raisin fix for my protesting stomach.

We finished the hike.  I actually made it!  I was thrilled.  It took us double the usual time, but I was high on finishing.  The view, our picnic, everything had heightened pleasure for me.  I felt like I had won a national "Attaboy" for something.

Later in the evening, my nausea increased.  I checked my blood and it was over 500.  I could not understand why, until I checked my pump site.  The exertion of the hike had my pump site disconnected from sweating.  I changed my site.  Giving the insulin time to bring my sugar levels down, everything settled and I began to feel normal again. (for me)

George Clooney starred in The Perfect Storm...a convergence of three terrible storms uniting into one deadly assault.  I had the syndrome acting up, hormone difficulties with "my time," and erratic blood sugar fluctuations because of hormones.  Unlike George, I survived. 

July 14, 2006

After the frenzy of our vacation and returning home to record pinball scoring and the paddle bruises of  summer spur-of-the-moment activity, my husband and I opted for a two-day camping get-away...just the two of us, well, three counting my stiff tag-along.  We went to the cool, placid peacefulness of Lake Dillon.

I love to camp...no ringing phones, television, fast-track living, meals on a dime, rapid morning-to-evening rush...living by the clock  It was the two of us amid the peaceful healing of nature's solitude without a schedule for anything.  Meals were eaten when hungry, naps were an indulgence in our tent against a backdrop of gentle afternoon rain, and we enjoyed intimate conversation or shared silence sitting around an evening campfire.

Syndrome physical symptoms abated for a time, but always lurk with a respectful vigilance in my mind for the next "confrontation."

The day we left.  My husband went to the bathroom, leaving me alone at our campsite.  Without warning, I became "stuck."  I could not make the 10-foot walk from the picnic table to our vehicle.  The embedded river cobble under my feet morphed into perceived scales on the back of a mythical creature wishing to devour me.  I was acutely aware of each stone.  Hans Christian Anderson has nothing on syndrome-induced imagination.

I tried to take a halting step just to step back to the safety of the picnic table.  Feeling conspicuous, the people in the neighboring campground added a dreaded audience to my syndrome dilemma.  I like nothing better than to blend into my environment and bogus facade of "normal.".  Syndrome antics make that impossible at times, greatly adding to my "damsel in distress" role, fueling my physical symptoms and syndrome angst...a vicious circle.

I spotted him coming down the hill, my knight-in-shining-armor without a steed.  I could feel relief welling up inside of me.  When he got to me, I smiled and said, "I am stuck."  Familiar with this scene, he extended his hand and I was freed from the grasp of my imaginative dragon, curious on-lookers, and statue mode.  I was able to walk to the vehicle.

June 30, 2006

June was the beginning of summer - filled with promises of fun and unspoken obstacles for me.  We went on a vacation to visit relatives.  "Interesting" is an all-encompassing adjective.  With SPS/SMS, "interesting" morphs into additional connotations from the dark recesses of my syndrome mind and macabre reactions of my syndrome body...living in a continual thrills, spills, chills of a demented amusement park without an exit.

A trip "home" is many things for me.  I am always excited about seeing missed loved ones.  Nostalgia gently tugs my heart with memories.  Imagination is tweaked at the passing and changing scenery from the passenger window of our car.  Motel stays and frequent dining out is decadent indulgence creating an atmosphere for heightened closeness between my husband, daughter, and me.  Special times.

I also take my obsessive fear of "Where is my medicine?"...a continual awareness of the locked location of my "life support."  Unfamiliarity, an extreme syndrome catalyst for me, becomes a daily change of my external environment - stage, script, and players.  The syndrome freezes with stage fright at "impromptu."...Interesting. :-)

There were subtle syndrome nuances entwined with vacation laughter and fun.  It is my life.  Some antagonistic incidents/perceptions stand out from our trip.  Two houses had bathrooms up long flights of wooden stairs.  Syndrome perception in going down seemed like walking into the dark, yawning jaws of a creature wanting to devour me.  Dark and hard were words I could feel..  My husband was my bathroom escort and syndrome defender.

Three wonderful and rambunctious grandsons were loved and enjoyed.  Add their antics to equally playful big dogs...it gave both homes a syndrome illusion of everything moving, loss of my limited sense of control, and heightened "danger" angst fueling rigidity, spasm, and "statue-mode" for me.  A volatile storm front was moving in creating an additional trigger for me.  I struggled with my syndrome symptoms, but was more concerned with my battle to appear "normal."

Recognizing my body needs therapeutic "time-outs" to physically cope, I would retreat to our motel room to regroup in solitude, cursing the syndrome that is my physical weakness.  While one can never be fully prepared, we have learned to make some concessions for our unwelcome traveling companion.

Our trip, in spite of the syndrome, was wonderful.  It was great to connect with family, spend time with our grandsons, and meet our new, and first, granddaughter. :-)  An added bonus, on the way home, we stopped to visit three fellow "stiffs."  I always cherish my in-person meetings.  It makes the stiff world a little smaller, less lonely, and so much brighter. :-)

April 21, 2006

This is part of an edited post I wrote to an Internet support group explaining my views involving Stiffman/Stiff Person anxiety:

Years before my diagnosis, when my physical SMS/SPS symptoms seemed more like physical nuisances than what was to come, I started having "anxiety" related to surroundings in doing physical things I had done for years...climbing, running, walking in certain areas, the top of stairs before descending.  Beginning anxiety was not as bad as it came to be with my syndrome progression.  I would have an unexplained sense of unease or lack of physical confidence.  My body would react to snow, concrete and parking lots with a stiffening and internal anxiety that I would struggle to quell.  I thought I was losing it.

I could go on and on with this subject, having had hours of deep conversations with several of my stiff buddies comparing and sharing observations and experiences. It is fascinating, the Stiff Person-induced anxieties and phobias - a malfunctioned and heightened "fight or flight" response.  Others think you should/could help it but you can't.

For me, situations that my syndrome-compromised nervous system perceives as a danger - stairs, the foyer, outside, vast areas of concrete or asphalt, possibly a four-foot expanse of floor, unknown situations, (Just to name a few!) :-) my body will respond wrongly with physical syndrome symptoms while my mind knows it is the wrong reaction.  Home equals safety to me.  I know every handhold, corner, element in my home.  It is familiar (known), a comfort zone.

There is a psychological school of thought - positive and negative reinforcement.  We use positive reinforcement when we train a dog to do a trick and reward him with a treat or cheer when our little one uses the potty.  Stiff Person Syndrome uses negative reinforcement, such as a fall, to give my anxiety fuel in future dealings with that location or situation.  It is as if the syndrome has taught my body incorrect ways to respond to areas/situations where I had previous bad SMS/SPS moments.  This is in addition to my dysfunctional syndrome preprogrammed "fight or flight" response. 

As medication and IVIg have lessened my physical symptoms and decreased anxiety, I think of ways to help lessen my learned or acquired misperception of a "something" and try to do the task or face the situation.  With repeated positive results, the hesitation, fear, and anxiety will lessen for some tasks, an area, or a situation.  I still haven't stomached the idea of crossing a road by myself.  Does positive reinforcement always work for me? No.  Some days the syndrome says no. But it has helped me in some ways along with diverting mind games, focus, deep breaths.

For me, the syndrome has gone beyond the spasms, tests, and current facts of the physical mechanics of SMS/SPS.  I am fascinated with the conflicting thought/body response of the syndrome.  Personally, that means I think about my syndrome-induced phobias and anxieties - know them, recognize possibilities, and search for inward understanding.   I try to think of solutions I can implement to help me accomplish something that tightens my body, shakes my core, and makes my heart beat fast...always with personal safety in mind.

An analogy:  Having SMS/SPS anxiety is standing on a single step.  Your eye and brain recognize it is only one step.  Your body reacts like you are on a precipice of Grand Canyon, half of your feet hanging over the edge, with a 50 mile tailwind at your back with nothing to hold on to.  The hell is you know it is only "a" step...a cruel disconnect between your mental rationale and your body's syndrome insanity.  Only one thing is worse...having an audience to this continual tug-of-war and trying to explain it?? :-)

April 18, 2006

This winter has seemed especially long to me.  Weather fluctuations play havoc with my syndrome symptoms during season changes.  I am eagerly anticipating the warmth of summer and enjoying the outdoors.  It is healing to me physically, and to my spirit.  

My sweetie took me for a walk the other night.  The wind was fierce, but I loved it.  It is such a feeling of "being alive." :-)  I like walking at twilight.  The darkness is a protective cloak from the scrutiny of others.  Darkness hides many perceptional obstacles from me but lends enough illumination to the white sidewalks to avoid tripping.  Twilight is a waning from the busy frenzy of the day...a calming time.

Our walk started out with the familiar syndrome tightness in my back.  As we continued, my body started to remember the correct way to walk, step, move.  I love those moments of physical recollection. :-)

April 4, 2006

I do not live for Stiffman/Stiff Person Syndrome.  I live with it.  My life is happy and full...in spite of.  As I go through my life, there is always an awareness of "The Syndrome."  What I do, how I do it, future plans, always involve a thought process to accommodate this possession of my body, and consequently, my thoughts.

I have always been an avid dreamer during sleep.  Since diagnosed with Stiffman/Stiff Person Syndrome, almost all of my nocturnal dreams involve the disorder in some capacity.  In a dream, I function normally, but know about the syndrome and need to "hide" it from others...my secret.  A dream may involve a physical challenge I resolve.  The most recent dream involved going down a long, wide flight of stairs and crossing a large brick space to board a shiny cylinder elevator.  Doctors were involved in some way. (Always!) 

Even when the syndrome is not picking on me with physical symptoms, he is always a part of my thoughts...a silent stalker of my soul.

March 31, 2006

Remote.  A couple of thoughts come to mind...an adjective meaning far removed or isolated, or a noun as in television remote control.  I had a syndrome moment where both meanings of remote applied - a remote remote.

Sometimes, I will have a syndrome symptom where I just freeze up.  Nothing will physically work.  I usually have hold of something and I cannot get my body to respond to a mental command of "Move."

I was searching for the remote and stopped at our combo magazine/lamp table.  The entertainment center was approximately three feet away with the remote parked beside the television.  I had a grip on the lamp and could not make myself let go or take a step.  I stood there, helplessly looking at the remote and thought...heck.

Usually, these lockdowns require serious mental diversions or a "bite the bullet" ability to physically commit to symptom unknowns.  At this particular moment, I just did not feel like summing up the mental or physical endeavor.  I called for my daughter.  She came, recognized my statue mode, and smiled.  At my request, she handed the remote to me.  Instantly, I unthawed and the syndrome moment had passed.

Moment by moment. :-)

March 21, 2006

A big worry for me is how my having SMS/SPS affects my family.  I was especially concerned about my youngest child as she was only four when I was diagnosed and syndrome symptoms were severe.

My daughter has learned an acceptance and compassion for people living with challenges.  It always touches my heart and fills me with pride when a situation exhibits this side of her.

She and her girlfriend were at the bowling alley/arcade as my husband and I were preparing to go meet them.  This was during our Spring Break vacation.  My daughter called me on her cell phone, filled with enthusiasm.  She had met a young boy with Spina Bifida.  She had given him her excess tickets and talked with his father.  They had a "compare and share" about this child's situation and my own.

I met the father when we arrived at the bowling alley.  His son is a beautiful boy.  The father was taken with my daughter's acceptance.  We ended up meeting the mother and sister as well.  They are an amazing family, supportive of their son and advocates for understanding of his condition.  Part of our conversation revolved around society's discomfort with physically/mentally-challenged people.

Having Stiffman/Stiff Person Syndrome has taught my daughter that "normal" is only a word.  Humanity and brotherhood include all of us.  As the boy's father hugged my daughter, I felt warmth, kinship, and pride.

March 20, 2006

Spring Break! Traveling is always an experience with the stiff guy.  He eats cheap, takes no room in the car, and stays in motels for free, but his presence can dominate any situation.

There are always the unspoken curiosities of movement disorders, especially sex.  Bathroom duties are discreetly inferred or silently kept in a socially-perceived etiquette of "cannot disclose." (Unless raunchy.)  Stiffman/Stiff Person Syndrome has stripped much of the taboo from my pre-syndrome perceptions and shyness about such matters.  I remain in awe of how intricate and miraculous the human body is...a perfect machine that performs so many interactive functions.  As David said, "I am fearfully and wonderfully made."

Bathroom duties can be a syndrome challenge on many fronts.  I am going to share a familiar traveler's woe...constipation...with the added thrill of a syndrome twist.

A couple days into our vacation, I knew I was in a defecation drought.  Bummer.  We were going to go to Vegas for a day...a shopping spree for a prom dress for my daughter; a joint mega-thrill for her and her girlfriend.  Searching the Internet before our trip, we discovered a shopping Emerald City in Vegas Oz.

Pulling up to this glistening architectural marvel of seductive shops and credit card snares, I felt the call of nature.  Figures...  In syndrome timing of hurry...I glanced at the beckoning stores in a race to the food court and waiting thrones in the ladies room.

Choosing a stall to rule, I took my seat.  Immediately, I recognize a red-alert moment.  I have the urge but inability to purge.  Unfortunately with SMS/SPS, the effort to go created strong spasms in my torso and quaking of my legs.  What to do?  I try, for a time, with the spasms aborting any and all efforts.  My diazepam prescription allows for "prn," (as needed) in accelerated syndrome situations.  This is one.  I take my prn and call my husband.

I stifle a chuckle as I hear his phone ring outside the bathroom door.  My imagination never turns off and I think..."Vegas, strange man outside the ladies room...mall security?"  (Stalker captured in Vegas Mall...news at five.)  I explain my situation to him, my stall in the stall.  Bless his heart, he remains a vigilant sentry while I am holding court.

Fast forward 90 minutes...nothing.  Mall security does take notice of my hubby and he settles for a soda in the food court while waiting for my periodic cell phone updates. ("Recon to Captain, no sign of the enemy.  Over.")  We discuss a change in tactic and decide to look for a drug store.

Feeling "anal," we look at all of the products to help "move things along."  I decide maybe suppositories (depositories?) may be a quick fix.  We resume our stations.  I did move to the handicap stall during my first reign and take up rule there again.  My syndrome over-sensibilities find comfort in the extra room and handrail grip.  I give the suppositories an hour and...nothing.  Continued effort creates horrible spasms that drench my shirt in sweat.  I need a break.

Walking and looking around, I feel like I have a boulder in my stomach.  I fear I have an impaction.  If I were home, I would go to the hospital.  My dilemma, I am in Vegas.  With a rare disorder like SMS/SPS, I cannot chance a spasmodic episode in ER for a roto-rooter excavation.  Talk about adding to my burden...

After a couple of hours, my meds and the suppositories feel like it may be a "go."  I enter yet another bathroom.  I struggle, push, and strain.  In honesty, giving birth was not this difficult.  I am having spasms, but they seem to be "controlled"? compared to earlier.  After an intense struggle, I did it!  I went potty.  I clapped and cheered.  (It was a mental celebration.)

Because of the intensity of my prolonged torso spasms, my side and stomach muscles were very sore for a few days afterward.  I felt like I had a weight lifted, but not off my shoulders.

Hubby and I were able to find humor in this situation, but there was a very serious lesson learned.  Minor problems can have a huge "impact" (groan) on ER care with the lack of knowledge about syndrome symptoms.  This fact was reinforced to me with my hesitation to seek immediate comfort for severe constipation through an out-of-town ER.  Because constipation can be a side-effect of my medication, future vacations will require careful forethought in cosmetic bag contents coupled with a traveling diet rich in prunes.

This is my end of the tale. :-)

March 1, 2006

Having a rare chronic illness involves so much more than finding a physician and effective medication/treatment...affordable and accessible healthcare. (Searching and bagging a Bigfoot would be easier.) I swim in insurance paperwork, drown in the ink.  I am fortunate.  I have two coverage plans but I am still frequently denied payment for treatment.  I fight with the tenacity of a bulldog with a thorn buried in a hemorrhoid.  I am acquiring the defense finesse of Perry Mason.  I can actually speak and understand insurance jargon...necessary weapons in appeal battles and phone encounters.  My gift of gab is a genetic gift?

If the fight for healthcare coverage only involved me, my heart would not be as burdened.  I carry images of so many who do not have access to healthcare; treatment that could enhance quality of life.  I feel righteous anger at America's healthcare system that denies so many.  In talking with NORD, I was told there are approximately 7,000 rare diseases, collectively afflicting 25 million individuals.  We are the unseen; the unknown.  Lack of medical care for the most needy is our social dirty secret.

Many good citizens recognize the cracks, chasms, in our healthcare system.  A national movement is taking place to find a solution to escalating costs and lack of coverage - The Citizen's Healthcare Working Group.

There was a meeting in Denver on February 27.  My husband and I attended.  Concerns and ideas were discussed within a large crowd.  I wanted to be a voice, a face for the millions of "unknowns."  In a discussion about healthcare, rare disorders still do not find a place.  A lady sitting next to me said, "If it weren't for some treatments, 'these' people would not be alive."  I asked her to qualify "these" people as I happened to be one...a person alive because of modern medical technology.  Give the lady a swastika and a time-travel ticket back to Nazi Germany.

In spite of the view some may have of people like me being a "disposable" person, a burden to society, I met a very compassionate committee person who understood and gave me some ideas.  There are some caring leaders in Washington who are pushing for healthcare change.  I left the meeting heartened because it is a beginning.

"You must be the change you wish to see in the world." ~ Gandhi

February 6, 2006

Today, I have a date with one of the other men in my life...my neuro.  When in public, I know the majority of my social contacts from the medical community.  I need to figure out how to get a monetary piece of the pie as my busy medical schedule almost qualifies me as a separate affiliate.  It is vital for me to have a medical team/physicians I can have trusting and personal relationships with.  Until a cure, we (My docs and I) are in this thing for life.  I am betting on longevity.  Fluid mobility?  I have cherished moments or interesting situations...a combination of "Touched By An Angel," "Tales From The Crypt," and "Laugh-In."

Today is a good day...I should say a "better" day physically.  Any day can be a wonderful day.  I plan on taking advantage of myself by stripping the beds and laundry...with enthusiastic anticipation.  

Having Stiff Person/Stiffman Syndrome can have some "twist of fate" perks.  Because of my "princess and pea" sensitivity to many things...especially stress...I find myself trimming recent negativity of some individuals from my life.  Stress will trigger a painful drawing of my torso and can lead to spasms.  Self-preservation over-rides a guilt-laden duty to tolerate boorish behavior.  It is liberating.  I question why I did not give myself permission for healthy emotional "deficit cuts" before the syndrome.  Life needs balance.