SYNDROME MOMENTS 2004

December 4, 2004

Friday was my infusion.  As always, I am very thankful for the treatment that has given me a quality of life with this syndrome.  My IVIg infusion always wipes me out.  My daughter is at a very busy social age (Fifteen.) and rest was not an option last night.  I plan to make up for it today.

A new CNA (certified nursing assistant) was working in the infusion clinic.  My daughter would describe him as "a hottie."  He was.  He recently graduated high school.  He had deep "baby blues," stylishly tipped blonde hair, and a dazzling white smile.  He was pleasant, keenly observant of what the nurse did, and performed his duties with "textbook" accuracy.  I was impressed with his obvious dedication.

I may be "middle-aged" and have a chronic illness, but I still appreciate "eye candy" when I see it.  I teased him.  I told him, "You know, women are going to be requesting a second bath for the day from you."  He slightly blushed, but smiled his killer smile.

I am still having mental flashbacks of severe continual spasm, causing  my physical confidence to falter.  I was anxious about how I was going to get into the hospital for my infusion.  As I have shared, with SMS, you continually plan.  I put my purse, book, some insurance information, my glucometer (blood checker), and cell phone into a small carry-on with wheels and a handle. (Surrogate walker.)  I had my trusty hiking pole.  Luck was with me.  The parking lot, where I needed to walk, was free of ice.  Pulling my supplies, with the aid of medication and my pole, I made it into the hospital, with a standing ovation resounding in my mind.  My reward was the attractive CNA and an easy vein access.☺

November 29, 2004

Today I did it!  I finally managed my appointment with my neurologist.  As I have shared in the last couple of entries, my physical confidence took a hammering with the spasmodic episode.  I had to "trick" myself so I wouldn't have a repeat of the previous Monday.  I made my appointment for after lunch, instead of morning.  My mom and I went to McDonalds for lunch, before my appointment.  Timing, the diversion of lunch, and my mom's company took anxious focus off of my appointment.  Successfully getting to my appointment helped bolster my confidence.

I discussed with my neurologist some tactics for my impending insurance hearing, pertaining to IVIg coverage.  Discussion was focused upon my more frequent break-through symptoms.  (Stress, cold weather, hormone fluctuations, and break from comfortable routine help contribute to some of my current problems.)  I am his first and only SMS patient.  While wanting to keep him as my neurologist, I am considering evaluation at a larger hospital in Utah.  I talked with their nurse and this neurological practice has 4-6 SMS patients.  My neurologist knows this neurologist and has referred patients to him.  I have had conversations with one of the patients.  She is a sweetheart, intelligent, and speaks highly of the Utah neurologist and facility.  I think it would be helpful to me and the other SMS patients, the more examples of the syndrome seen in one practice.  I would like to wait for more predictable weather before scheduling an appointment.

November 24, 2004

Today, I am very sore after my encounter with the dragon's breath of SMS.  It is a good day to cool my jets.  I always question, after an ugly encounter like that, "Am I getting worse?"  It is a natural knee-jerk reaction.  I don't believe so.  I cannot believe so.  My system is so sensitive to life with this syndrome.  Sometimes, it doesn't take much, or anything, to set SMS symptoms off.

November has had me very preoccupied with the election, government intrigues, and world events.  I devour news articles.  I still take time to give my soul a daily vitamin.  I like to read some Scripture and have a quiet time of prayer.  I am guilty of allowing this personal time with God to become routine.  Sometimes, I am blessed with an appreciative reconnection.

Recently, I read about the hymn, Just As I Am.  The hymn is synonymous with Billy Graham.  I know the words and always associated the song as a hymn of invitation - Just As I Am, God accepting me with all of my faults.  The origin of the hymn was unknown to me, and is made more dear to me, because of the writer.  I can relate on a spiritual and a physical level with the hymn's author.☺

Charlotte Elliot was an invalid.  In 1834, she was reduced to being just a spectator as her family raised money to build a school in Brighton, England.  One night, feeling the helplessness of her physical condition, she realized God accepted her, loved her, just as she was.  From this epiphany, she penned the words to the beloved hymn, Just As I Am.  It was published in The Invalid's Hymn Book.  Almost two hundred years later, her song continues to touch and bless hearts.

Nursing sore muscles from yesterday's experience and dealing with the brutal blow to my physical confidence, this reading blessed me today.

Just As I Am.☺

November 23, 2004

Good days will still have flecks of SMS scattered among the minutes, a mild apprehension, a momentary stiffness, a mild ripple of a spasm, fatigue, and the constant reminder of illness in taking medication on time.  Good days, or moments within a day, allow me to put Stiffman Syndrome temporarily out of my main focus of thought, a welcome mental and physical reprieve.  Yesterday was a very bad day.

I had an early morning appointment with my neurologist.  This was an SMS symptom setup for me.  I do not do early, time restraints, or hurry very well.  I am very weather sensitive.  A drastic drop in temperature was an added stimulus.  I could feel my body's protest as I was getting ready for my appointment.  Movement, with cement heaviness, yielded to rigid immobility.  From there, I graduated to minor spasms of clonus.  Clonus is a continual, rapid repetition of painful spasm, from my understanding.

I found myself "stuck" in the foyer.  I tried to get down and crawl, but the openness of the entryway just fed my SMS trepidation.  I managed to climb up the wooden coat rack.  Typical veteran SMS thought, I looked at the situation, gauged my physical symptoms, and tried to plan an exit strategy.  I had already taken an extra diazepam and had my emergency indoor cane in hand.  It was not enough.  I took the coat rack and used it as a gait aid into the kitchen.  From previous experience, I recognized this to be a serious situation for me.  I ended up taking another diazepam, something I never do.  I managed to get into the laundry room which leads into the garage.

Trying to bend down to put on my shoes, my torso was locked in rigidity with occasional ripples of spasm.  I kept thinking, "Once I get my shoes on, I will be alright."  Severe non-stop torso spasms hit me at that moment.  I was on my knees, arms outstretched (Ironically, crucifixion style.), clutching the door handle with my right hand, the dryer with my left.  I had not had an episode like this in awhile.

My body was out of my control and kept contorting with severe spasms.  It was especially painful in my lower back.  Breathing was shallow and in short gasps, in time with my spasms.  I did not cognitively orchestrate this breathing choreography.☺  I kept trying to calm myself by reciting Scripture in my head and slowing my breathing.  I couldn't do it.

I unsuccessfully tried to let go of the door handle.  I thought I probably looked like someone being electrocuted.  My mind kept working during this episode.  I wanted to get up or lay down.  I could not do either.  Sweating profusely, (This is an intense workout.) my nose started to run and I could not wipe it.  I had medication in my pocket that I could not access, let alone open the vial.  I could only repeat a two-word prayer, "Please, God."

I looked into the kitchen, so close and inaccessible.  The phone was a "forget it."  Finding a brief moment of amusement at my predicament, I knew my heart had to be strong.  I wasn't going to die of cardiac arrest, at least not right then.  Cardiac or respiratory arrest during severe spasm was one of my diagnosing neurologist's concerns.  He had published an article about it, "Sudden Death."  (Somehow, "Sudden Death" conjures up an image of Charles Bronson or Stephen Segal, as a tough guy hero beating the cinematic odds.)  I was not living in a movie, but was desperately wishing for a stunt woman, body double, or stand-in.

The diazepam I had taken before entering the laundry room started to kick in.  I had a brief break in spasms.  I tried to get up.  Movement precipitated the entire thing all over again.  After a few minutes, (Seemed like hours.) I was able to get up and creep around the cupboards to the phone.  I was determined to go to my appointment.  I called and said I was running late.

I crept back to the laundry room.  With sore muscles and traumatized confidence, I tried to get my shoes on again.  It was going to be a "no go."  I could barely reach my feet as I stuffed my untied shoelaces into my shoes.  I had to wall slide to get into the car.  Backing out, I knocked over the garbage can, scattering garbage across the sidewalk.  Knocking over the trash kicked in another round of spasms not as severe as before.  I called my neurologist during a lull and talked to him.  He told me to just stay home and rest.  No problem, except I was stuck in my car in the driveway.  I called my husband and told him that I needed him.

I waited until he got home. (Like there was a choice?)☺  He smiled at me as he got out of his vehicle.  We have had so many SMS adventures together.  He picked up the garbage.  I was feeling better and was able to pull the car into the garage.  As we entered the house, he noticed the coat rack in the middle of the kitchen floor.  He started to chuckle.  "What is that doing there?"  he asked.

Living the SMS comedy/drama/tragedy with me, he was not surprised at my "spur of the moment" improvisation of the coat rack.  He settled me in the recliner before he went back to work.  My moment had passed.

Why do Tales From The Crypt come to mind?  I can hear the maniacal laugh of the gruesome little crypt keeper.☺

October 18, 2004

Reality and fantasy.  Common words and antonyms.  Funny how they both share relevance in my living with illness.  Daily I face the realities of Stiffman Syndrome in taking my medication, gauging pain level for the day, and handling whatever obstacles may surface. I am an SMS meteorologist predicting a calm or stormy day.  As typical with many weather forecasters, I am often wrong.  Some days, the reality of SMS surrounds me with physical challenges while squelching minions of panic and fear. 

Oh, but then there are the good days. For whatever reason, the rotation of the moon or planets are aligned, I have earned a break?  My body remembers how to function ("N" word alert!) "normally."  When I have episodes of physical clarity, I allow myself to temporarily forget I have SMS.   Believing the fantasy of "normal" is so easy.  A return to SMS reality is so cruel.

I always take my morning medication when I awaken.  Last weekend, we slept in a couple of hours.  That has not been a big problem in the past.  I got caught up in morning activities while my husband drove my daughter to an engagement.  Swiftly, without forewarning, Stiffman Syndrome waged a brutal attack.

My body stiffened and my back locked in the familiar, but never used to, SMS warning mode, "Don't move, I've got you covered!"  The mini spasms started and from past experience and instinctive self-preservation, I managed to slide down the wall to "ground zero," the floor.  This was a vicious assault and I needed an extra diazepam.  No problem except I was alone, stuck in the hallway leading to the kitchen, and there was the visual boundary of carpet leading to a hardwood floor.  As I have done so many times, I try to plan a strategy.

I could stay on the floor and wait for my husband.  My independent streak did not want to consider that option...yet.  If I could get my nerve up and my body calmed down, I could crawl to the pantry and creep up the door to the doorknob, a handhold.  (SMS people would make champion rock climbers.) ☺  I managed to achieve that directive.  Standing at the pantry, I only needed to cross the laundry room door, slide by the fridge, and I would be at the cupboard where I keep my medicine.

I held onto the first laundry room doorjamb, reached for the second and managed to, somehow, reach my medicine cupboard.  I opened my medication bottle and was dismayed to discover I hadn't taken my first dosage of medication yet! (I put my day's medication in one small bottle to monitor when I take what.)  Like an addict needing a fix, I downed my medication and waited for it to produce its magic.

As I usually do with my SMS moments, I will ponder or dissect them for a lesson or future survival tip.  This episode taught me something.  "Normal" is a chemically induced fantasy.  (Some do drugs to get high.  I do drugs to be "normal.")  I am truly thankful for the positive response I get from my medication and treatment.  It is sobering to realize your survival, (Maybe too dramatic a word.) and physical quality of life are dependant on medication.

I feel I should wear army fatigues.  (I may design a comfortable SMS fashion line.)  I often use military analogy in describing my experiences with SMS.  SMS is an ongoing war with daily battles.  Sometimes, a page from The Exorcist seems appropriate.  It seems my body is possessed by an evil spirit.  SMS makes me do some physical, crazy, out of control things, but I have yet to turn my head in a 360-degree rotation.

I have promoted myself to general.  (That is one of the great things about being an army of one.) ☺  I may not be able to control the assaults, but I can use my mind, a positive attitude, faith, and effective medical technology to engage my enemy one battle at a time.  Being the eternal optimist, I look to the day when the war will be won.

September 25, 2004

This week was focused on Stiffman maintenance, not my daily regimen of medication, but my appointments with my SMS Chief Of Staff, (my neurologist,) and my five week destiny with IVIg.

Living with this syndrome, I have developed an expectation for the vagaries of SMS.  Days or moments within a day can quickly change on an SMS whim.  I do not become concerned until there appears to be a consistency of adverse changes.  Since Spring, I experience more frequent  SMS moments of complete spasmodic immobilization or phobic angst.  These manifestations primarily occur when preparing to go somewhere, the element of punctuality.  I do not do hurry, time restraints, or unknown scenarios well.

Years of living with the reality of uncertainty, I am not overly obsessed with this heightened Stiffman insurgence.  Many factors could be in play.  I had an extremely hectic, frenzied summer.  This is not good for my SMS-stimulated nervous system.  Life will not relinquish you from other problems because you have an illness.  (I think chronic illness should qualify you for exemption.) ☺  Some of my loved ones are going through difficult times.  Worry is stress fertilizer for the syndrome.  Hormone fluctuations and insurance battles have been thrown into the mix.  Without Stiffman Syndrome, there is enough ammunition to qualify me for tranquilizers and a padded room.  I am also ten years older than when diagnosed.  Healthy bodies slow with age.  Stiffman Syndrome is rumored to be progressive.  I stubbornly refuse to embrace that thought. ☺

I discussed the past few months with my neurologist and we decided to adjust my medication for those "hard to handle" SMS moments.  I am hoping the predictable routine of fall and the comfort of slower days will contribute to a tapering of my bad episodes.  However, I do have an active teen in the house.  Predictable, comfort, and slower may be wishful words.

My neurologist and I got into a passionate discussion of politics.  We share the same views.  I cannot get too emotionally stimulated.  True to the nature of the SMS beast, my back drew into a rigid protest making it difficult to walk out of the office, even with my hiking pole.  I was parked outside of the building, close to the door. I had a handicapped parking spot.  Mentally, I gave myself a pep talk and tried to divert my anxiety to approach my car.  I balked, indulged in a brief spasm, and knelt to softly touch the bush in front of my car, a visual support.  I managed the couple of steps to my car and my ever-present phantom retreated as quickly as he came.

I arrived on time for my IVIg appointment on the scheduled morning.  "He" was there again.  He had been there for a few of my infusions and I always noticed him.  He was younger and looked healthy.  (Nice legs.)  I understood the deception of "looks" from my own situation.  The only clues to him having an illness were he was in the infusion clinic and a permanent multi-tubing vein access was visible from under his shirt sleeve.  The plastic tubes clacked with freedom from his clothing.  His complicated tubing made my one temporary vein access seem very inferior.  I decided I would talk to him today.

He was warm, friendly, and pleasant.  We did not exchange names.  I guess when you are dealing with serious chronic illness, you will introduce yourself to another by your disease.  There is an immediate unspoken kinship and names seem irrelevant.  I told him about Stiffman Syndrome.  He told me he had a candida infection of his throat and digestive system.  Laughing, he said, "I am not even a woman." 

You learn a lot of medical snippets when you live with illness for years.  I told him babies get thrush.  He told me he could not eat anything with sugar, fruit, artificial sweetener, or yeast.  He gave me an assessing look and then he said, "I am HIV positive." 

He waited to gauge my response.  I had a very bad cold.  I asked him if I was going to be a problem for him.  He was surprised and touched.  He said, "Nobody ever worries about me.  They usually try to get away from me." 

I do not have HIV, but I understand an uninformed and judgmental society when it comes to illness.  I understand explaining your illness to unreceptive minds.  I told him, "There are many afflictions known to man but I think the greatest is ignorance."

Our approaching nurse heard our exchange.  She said, "I have to agree."

I am glad I talked with him.  This was his last visit to the infusion clinic.  He was moving to another state.  He wanted to try an experimental drug and insurance was denying it.  He had to move where he could get treatment.  Luckily, he would be living with his sister and her family.  He was optimistic and hopeful  Optimism, hope, humor, and faith - emotional armor that has stood me well. ☺

September 20, 2004

Today, two significant things come to mind.  

First... 

The cosmetic representative, I had mentioned in a previous entry, called me last week.  The cosmetic company was planning a meeting at a local hotel.  Invitations were extended to local women who were in business for themselves.  The meeting served a dual purpose for showcasing individual businesses while possibly recruiting future cosmetic saleswomen.  I was not representing any business.  I was representing Stiffman Syndrome. 

It was interesting and gratifying to hear women speak of fulfilling their dreams with various creative enterprises.  The national rep, for the cosmetic firm, was a very vivacious and engaging woman.  She spoke of her seventeen years of work and accomplishments with the cosmetic company.

It is funny.  I do not get nervous.  Stiffman Syndrome is a very unpredictable escort to every function I attend.  I tried to anticipate (and thwart) his antics by taking some extra medication.  I dressed up for the occasion, black dress, muted gray blazer, and my pearls.  My daughter helped me with sheer black stockings.  My husband does not have a clue how pantyhose work, but he has given some successful past performances.  (He reminds me of the prince fitting Cinderella with her glass shoe.) ☺

My daughter walked up to the front of the room and stood with me.  Though rigid, I managed to briefly explain SMS, autoimmune disease, and the relevance to women.  My audience was kind and very interested.  You could have heard a pin drop.  The national representative shared her most impressive accomplishment at this time.  She was diagnosed with MS five years prior.

The attending cabaret owner asked me to call her.  She wants to give me tickets.  I hugged her.  A couple of ladies shared their personal stories with me afterward.  People are very kind and open to learn.  You have to give them a chance while taking a chance.  I kissed my fingers in a salute to the gentleman in the back.  He told me I was a "classy lady."  That was my motive for dressing up - to show serious illness can often be disguised and hidden.  I also wanted to be seen as a woman, not an illness.

It was a rewarding experience.  I wish for all of the creative and daring ladies the realization of their dream's pursuits. ☺

Second...

There has been some list discussion about fear and future uncertainties in having Stiffman Syndrome.  I understand, all too well, the reality of that consuming terror.  Terror is a good word to describe my feelings.  In the beginning, (An ominous portent.) I felt all of those dark emotions.  Panic was in every breath I took, every one of my thoughts.  Looming unknowns become my suffocating reality, not just a couple of descriptive words.

The stark realities of SMS, the physical pain, bizarre symptoms, and emotional energy required are frightening concepts I wake up to every morning.  SMS is not just a temporary problem that will resolve itself - the enormity of the realization...the rest of my life.  Illness robs me of physical control.  I always fear for my family.  The uncertainty of progression  involving severity of symptoms scares me.  Pain and uncertainty are a terrifying combination.

Life was never certain.  Life is based on fate and choice.  SMS teaches me that.  I cannot do anything about my fate, but I do have power over my mental choices.  Fear and sorrow are emotions I need to acknowledge.  I can choose how much time, effort, and control I want to give them.  I rely on my faith to help me cope.

Coping is a word used frequently.  I never realized how much emotional energy coping takes.  I recently explained my perception of coping.  "Coping is a destiny I travel every day.  I never arrive."  Cope and hope, mental vitamins for every day.

September 2, 2004

I have an illness.  In spite of everything, I am convinced, more than ever, the worst affliction known to man is to feel or be unloved.  In my life, I have observed embittered people deliberately turn their back on love.  Confused individuals misinterpret love as sex or fitting in. Misguided people will falsify self to become "whatever" or "whoever," in the pursuit of love. Sometimes illness is used as an excuse to become unlovable or a demand to be loved.  The childhood story, The Velveteen Rabbit, expresses the concept of love, sweetly, simply, and eloquently.  I will share an excerpt.☺

The Velveteen Rabbit

by Margery Williams

"What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"

"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

**********

I hope I spend my life always "becoming" and striving to be "real."

August 29, 2004

Hormones.  A convenient excuse, probable cause, or miniscule time-bomb in a woman's make-up.  From the time I received my first booklet about being a woman, (My secret document in the form of a softly muted purplish-blue handbook with a frilly dressed ingénue in pink adorning the cover.) explaining the mysteries of menstruation to my fourth grade mind.  Reality and time have expounded on that primitive journal.  Dismissing the acronym of PMS, premenstrual syndrome, which purportedly turns demure women into raving lunatics; I have been pre, post, or mid some hormonal mystery all of my adult life.  Even pregnancy begins with a pre.

I guess pre and post were not enough.  The elusive "they" have added another descriptive prefix to compound the mysteries of female hormonal fluctuations, creating a new phase altogether - perimenopause.  I am not sure what differentiates perimenopause from premenopause?  I know I still have regular cycles.  I know because of my age, I am lumped into that gray limbo of peri.  I am not sure when peri leads to pre. (?)  Post is a year off with good behavior. ☺

Having Stiffman Syndrome and diabetes, my time and effort are severely tried and consumed in dealing with the symptoms of my combined illnesses.  I only know that monthly hormone fluctuations give additional energy to both of my adversaries.  Sugar levels are erratic and SMS symptoms increase in severity and frequency.  I do not have the luxury to indulge in PMS baying at the moon. ☺

Being a medical sleuth, (necessary survival skill) I have tried to look up detailed information about the relationship between hormones and illness.  There is fuzzy acknowledgement of autoimmune illness exacerbation with hormones, but no clear data as to the why or how.  I just know that from ovulation on, especially since I am considered peri, for up to the next possible10 years, (Sounds like a prison sentence.) my SMS symptoms have become increasingly difficult.

Last week had several bad hormonal-induced SMS moments and days leading up to Sunday.  I was showering for church.  The spasms hit and I knew I was going to need help.  I yelled for my husband.  Being a typical man, he viewed helping me out of the shower as an opportunity.  While I was clinging to his neck, he had something provocative to say.  I had to smile with my chastisement of it not being a good time.  (I think he would come out of a coma for food or romance.)

I made it to the kitchen.  I downed an extra half of a diazepam.  By that time, my back was painfully bending backwards in the familiar, but never quite used to, rigidity.  Myoclonic spasms started.  Experience, with the illness, has taught me to chill for a spell.  My husband was helping me to the recliner.  My daughter saw and recognized the signs of SMS assault.  She came to my other side.  She was holding me at my midriff, one hand on my back and the other on my stomach.

She had never felt the strength of my spasms before.  Kneeling at my feet, she laid her head on my lap, embraced my legs, and started to silently cry.  Her fright and worry were harder to deal with than the Stiffman Syndrome episode, a real heartbreaker.  I stroked her hair, assured her, calmed her, and told her I would be alright.  After a few minutes of rest and giving the med a chance to kick in, I made it to church.☺

Sunday was a quiet day.  My hormones were rioting a protest, wreaking havoc in my system with SMS symptoms.  One positive in all of this, considering what hormone fluctuations can do with illness, hot flashes should be a breeze!  My internal body temperature is low anyway.  I figure I will hopefully register at 98.6.

August 25, 2004

"What I do today is important because I am paying a day of my life for it. What I accomplish must be worthwhile because the price is high." --- Author Unknown

Wow!  Looking at my life through that mind-blowing epiphany of a quotation really puts things into perspective.  Actually, reading that quotation just reaffirmed a very valuable lesson chronic illness has taught me - a renewed reverence for the uncertainty and fragility of life. 

One of the most frequently asked questions for a newly diagnosed SMS individual is about longevity of life.  I was no different.  Faced with the reality of mortality, I discovered a fervent desire and love for life.  Ironically, the future was just a taken-for-granted delusion I bought into, spending my days as a no-limit credit card.  I realized tomorrow had never been a guarantee for me.  My diagnosis tempered my frivolous expenditure of time.  Illness gifted me with the priceless treasure of a deep appreciation for each day.  I love the lyrics to the following song.

LIVE LIKE YOU WERE DYIN'

~ Tim McGraw ~

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
And he says,

I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fu Manchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

He said I was finally the husband,
That most the time I wasn't.
And I became a friend a friend would like to have.
And all the sudden goin' fishing,
Wasn't such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look at what I'd do
If I could do it all again.
And then.

Like tomorrow was a gift and you've got eternity
To think about what you do with it,
What could you do with it, what can
I do with with it, what would I do with it.

Sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fu Manchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin'.
And he said someday I hope you get the chance,
To live like you were dyin'.

To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.

August 14, 2004

Nocturnal bathroom trips - an annoying disruption of sleep, warmth, and comfort.  After laying awhile, trying to determine if I can wait until morning, a glance at the clock's illuminated 4:10 AM tells me that waiting is not negotiable.  Stiffman Syndrome adds a dimension of challenge to my frustration of leaving a warm bed.  I walk to the end of the bed and my nonexistent night-time vision trips my SMS involuntary "stop or drop" statue mode.  This is a mandatory "take a breather" and assess the SMS moment situation.

After a quick navigational strategy is reached, self-preservation has me cross from the bed to the television case, the shortest open space distance under the threat of darkness.  My imagination dresses me in camouflage jammies, dangling from the rope of a whirring helicopter, with Arnold Schwarzenegger leading a toilet paper charge.  Bravely, I slide around the television stand to the bathroom door, hugging the wall at all times.

Confidence is in control upon entering the bathroom and I am able to leave wall security to achieve my directive, a-middle-of-the-night pee.  Mission accomplished.  SMS is temporarily thwarted as I slip into the safety of my now cooled side of the bed and drift back to sleep.☺

August 11, 2004

I like to end my emails with this closing, "May today gift you with one memory worth reliving, one thing to bring a smile, the chance to share love, and the wisdom to recognize opportunity."  Opportunity.  Every day is filled with opportunities.  So often I let them pass by me but sometimes I recognize an opportunity and grab it.☺

Last night, my daughter was invited to some sort of meeting to model a makeover for cosmetics.  I went with her.  It was a small gathering of sales representatives for a brand of cosmetics.  My daughter and I were the only two who were not affiliated with this cosmetic venture.  My daughter did her makeup and showed the ladies her chosen look.

The ladies were a very pleasant group who enjoyed their mutual vocation.  Celebrating individual accomplishments was the purpose of this meeting.  Some of the sales perks are travel and jewelry.  I was asked if I liked to travel.  Smiling, I did not really answer.  Inwardly, I was thinking unhindered movement at the mall would be nice.  I did indulge in a brief moment of envy.  Life can be wonderfully frivolous for some.  I still possess a woman's vanity, but illness dulls the brilliance of trinkets and baubles. 

As an outsider to their job interests, I could still enjoy their obvious pleasure in group discussion and individual appreciation.  Each lady was introduced and her accomplishments shared.  I knew I would be asked about myself.  An opportunity.  Society's usual introductory question, "What do you do?"  Well...☺

Truthfully, I answered that I was unable to work due to a rare neurological disorder, Stiffman Syndrome.  I proceeded to briefly explain the illness.  I gave this website as an introduction for anyone who was genuinely interested in learning about SMS.  Conversation was generated in the altruistic cancer endeavors of this company and possible ideas to showcase challenged customers.  Time will tell if this was a moment's whim or a serious prospect.  What mattered to me was a few more individuals learned about Stiffman Syndrome and for a brief moment - were interested.

My daughter was amused as we walked to the car.  She said that she knew I was going to say something, calling me outspoken.  She then said something very poetic and beautiful to me.  She said, "Mom, you spread your seeds with words."

The meaning was not lost to me.  I guess it doesn't matter if an audience is large or small.  What matters is enlightenment, one person at a time.

July 27, 2004

Sometimes, there is a fine line between fantasy and reality, fact and fiction, sleep and wakefulness.  In my dreams, I can run unhindered or even fly.  Often, my dreams have an unspoken but omnipresent undercurrent of Stiffman Syndrome laced into my subconscious thinking - similar to my life.  This dream is a nightmare, reminiscent of living with SMS.  I am trapped in my body, unable to move.  My body is submerged under thick ice.  Mesmerized, I can see myself under the ice while I feel the consuming terror of my likeness imprisoned in the constricting cold.  My hands are futilely beating on the ice.  I am trying to scream and cannot.  Screams fill my mouth and find no release.  Despair and panic fill my heart.  I want someone to hear me.  With resolution, I try harder to scream.

Lost in the fog between wakefulness and sleep, I feel terror and hear faint whimpering, knowing the sound is coming from me.  Feeling renewed hope, I try harder to be heard.  Sleep refuses to completely release its hold on me.  I am conscious of strong arms pulling me close.  I am enfolded into the familiar warmth of my husband's chest and am vaguely aware of comforting words.  I only know I was heard.

Waking up in the morning, my husband tells me I must have been dreaming.  He said I was crying in my sleep and he heard me.

In the confining misery of dream and reality, I only know I was heard.

July 26, 2004

Amazed, I sit here and look at the date.  Summer is flying by.  Childhood summers stretched for an eternity.  Life's clock was a gentle tick-tock of indefiniteness.  Reaching middle-age, (?)☺I hear a booming gong, gong, gone of Big Ben proportions with an urgency spurred by illness.  Time and good days are precious gifts.

My husband and I went to Frisco on a camping trip last week, just the two of us.  Frisco is a typical Colorado perception for anyone who has never been.  Snow-capped mountains, towering pines, and a sparkling lake provide breathtaking vistas. 

I loved our campsite.  Quiet was a comforting cocoon.  No telephone ringing, television distraction, computer absorption, or clock watching.  Time is irrelevant when we camp.  We eat when we are hungry and sleep when we are tired.  My husband and I indulged in an afternoon nap while a gentle rain fell on our tent.  Supper was simple, garlic vermicelli with artificial crab meat.  Enveloped in darkness, sitting by a crackling fire, we talked endlessly about many things.  Illness was temporarily set aside.  I envy the pace of "just living" by those who lived long ago.  Sometimes, I think for every step forward in progress, two steps back are sacrificed in simplicity of life.  When did Paxil replace One a Day?

As always, every day is riddled with reminders of illness.  Jokingly, I refer to my daily medical routine as life support.  My daily challenge is to mesh normalcy with medical upkeep.  I am a high maintenance woman.

We decided to try an easy (No such word in SMS land.) trail that followed a creek.  Seniors, toddlers, and girls wearing thong sandals (Thought I should clarify thong.) were traversing this path.  I used two hiking poles and wore hikers.  My husband has a strap he will hook onto his backpack (Supplies for my SMS and diabetes.) for me to hold on to when I am in the grips of living rigor mortis or panicked spasm.  People, in passing me, assume I am blind.  They do not realize I can see how they look at me.  I find it amusing.☺

I have several SMS moments bite me in the butt.  I still manage a few appreciative peeks at the creek and the mountains, willing to pay the price of SMS panic.  It is hard to explain the gang assault of SMS on your psyche and body over a simple rock protruding in the path.  I finally had my husband move, per my instructions, 4-6 inches and stop, to allow me the unhindered time to slide my feet to his while hanging on to my tether.  We continued this sequence for the two feet around the rock.  Most people would just walk over it.  For me, that was not an option.

Our trip was lovely.  I thoroughly enjoyed myself..."in spite of."☺

Retrieving the mail on our return home, I had seven denials of IVIg coverage for Stiffman Syndrome.  I have only been on IVIg since the fall of 1994.  Funny, I do not freak out.  I take a deep breath and realize this for what it is, another opportunity for me.  I will be scheduled for a hearing at which I requested to attend.  It will be my life that is being discussed and decisions made.  I will have a say.

I just don't see my situation.  I see faceless individuals who think insurance denial is the final word and accept it.  I feel passionate indignation within me.  Medical care has gotten to a place where it is not always about the patient.  Often, it is about profit.  I have been blessed to have connected with some renowned neurologists.  Unfortunately, they become unwilling puppets to a greed oriented system themselves.

I do not believe in whining about the cards fate has dealt me.  A gauntlet has been raised and I will prepare myself to face the challenge.  I do not know what the outcome will be, but I choose to make a memorable impression.  The downfall, dealing with stress is just stoking the fire of SMS wrath against me.

The true tragedy, chronic illness is devastating in a person's life on its own.  Dealing with the medical community's misunderstanding of a rare illness, hopefully finding efficacious treatment, and having to be your own advocate in receiving treatment approval is morally wrong.  I have stated, "There are no absolutes in medicine."  The only absolute in life, you die.

I may have to run for office in 2004.☺

July 19, 2004

Yesterday was a very nice day.☺  We started our day with church.  Worshiping with music and a sermon helps keep you grounded and spiritually on track.

My morning was one of those slow moving, extra tight mornings.  I do not do hurry well.  I do not do hurry in the morning well at all.  (That sounds like a song or some sort of movie musical - Hurry In The Morning.)  I am "Hurry Putter."  I wanted to spend some time with my husband.  I suggested a picnic on the Monument. 

I had stamps to get a free 12-inch sub at Subway.  Buying the qualifying drink to get the free sub came to $1.28.  Not bad for a dinner for two.  A storm was threatening in the distance.  There was some bluster, wind, and thunder, but just a few sprinkles of rain.  A desert rain has a distinct smell.  Pinyon pines refresh their sweet musky scent in the air.  The cloud cover, along with the wind, was cooling.  We decided to take a walk.

The chosen trail is relatively easy.  Seniors do it and have passed me on occasion.  It is wide, safe, but is a gradual incline.  I have dubbed it butt hill.  Reason being, doing that particular trail in its entirety, on a regular basis, would give you glutes you could crack walnuts with.  I had both of my hiking poles.  My husband is akin to having my own private, trained, SMS, seeing-eye dog.  Living with ten years of my Stiffman Syndrome paranoia gives him an idea what some of my perceptual triggers are.  He stood at a place in the trail that had a dip to one side and was a visual wall of support for me.

During our walk, I did a full body jolt, three times, causing my footing to slip but caught myself with my poles.  As always, I am doing the continual SMS mental visual scope to check for anything that will cause a potential problem for me.  My back pulled and burned.  I always am aware of pain but the exultation of being out and "doing" helped in dealing with my physical discomfort.  Our thoughts mutually turned to the anticipated sub.  We headed back.

Stiffman Syndrome gives me a heightened misguided sense of danger.  I am also blessed with a heightened awareness of everything - the cool wind caressing my body, an occasional drop of rain on my skin, sporadic jags of lightening, and exhilaration of being alive.  I noticed the ancient rock formations.  I was silently thinking, "These mountains have seen so much with the passage of time.  They guard their secrets with stony silence.  They will continue eons after I am gone.  They endure."

I noticed a large rock that appeared like someone splashed paint all over it.  Nature had painted hues of sienna, sage green of lichen, black, and a turquoise shade from an unknown source.  All of this was on the roughened backdrop of the sandstone-colored rock.  Maybe that is why I chose this background for my website.  It reminds me of the desert rock I love so much.  Like an exuberant child, I had to stop and admire this Rembrandt marvel of nature.  The illness gift of appreciating the simple is one worthwhile compensation.☺

I had a couple of SMS struggles toward the end of our walk.  My husband, my Linus security blanket, had to wear me as an extension of his water pack.  I am also a diabetic.  I always have this partner tagging along with Stiffman Syndrome, partners in crime.  My glucometer is a must-have accessory.  I started out with a blood sugar reading of 211.  My sugar plummeted to an 86 within a few minutes.  I turned off my pump and my sugar still dropped to 67.  Raisins and crackers sustained me until we returned to our vehicle.

My husband helped me remove my socks.  I brought sandals along because I knew my hooves would be hot.  We had a tailgate party.☺  We enjoyed our subs, chomped some chips, and indulged in cold sodas.  We had downed 64 oz. of water while we were exploring.  Code of the desert - hydrate.  We were the only ones at the picnic area.  We could see the two barren storm clouds overhead.  In the distance, the vibrant blue sky and glowing white clouds provided a sharp contrast.  The quiet was welcome.  We talked, shared, and enjoyed moments of companionable silence.  Reluctantly, it was time to leave.

I am eagerly anticipating a hopeful camping trip this week.☺

July 17, 2004

Yesterday, I had my infusion.  In the last ten years, I am sure I have had over 150 intravenous infusions of immunoglobulin, IVIg.  A good read is a must-have way of passing time.  I have had infusions in a doctor's office, in a cancer clinic and now an infusion clinic. So many days spent, people encountered and stories shared.  A commonality shared by all of us, illness treated with vein exposure and invasion.

Insurance is denying coverage for IVIg for Stiffman Syndrome.  It seems, with recent rewritten policy, that Stiffman Syndrome is not on the "covered" list.  I had a brutal insurance battle in 1994.  IVIg denial resulted in a very dramatic and rapid decline with my Stiffman Syndrome symptoms.  Oddly, I do not feel overly anxious this time.  I am older, definitely wiser, and illness has gifted me with the tenacity of a hungry dog with a bone in my chops.  I will not let go.  I also have the assurance God will not let go of me.☺

I was summoned to the office, pre-infusion, of the nurse who handles hospital reimbursement with difficult insurance claims.  I make sure I know and understand all aspects of my illness, even insurance issues.  I am accustomed to the shell-shocked looks and minimal conversation reciprocation once I am in SMS soapbox mode.  Apparently, many take insurance bureaucratic mandates as the final word.  I tend to become confrontational, using calm knowledge as my offensive tactic, implemented with an offensive line-up of thorough record keeping and information gathering.  Underestimation has become a home field advantage for me.☺  The insurance nurse told me that I was obviously very passionate about this issue.  If passionate is defined as perceiving our healthcare system as flawed, inadequate, and strictly motivated by profit, I am passionate.  Chronic illness is stressful enough without jumping through fire hoops of bureaucratic decisions, made by unknown and medically inept pencil pushers, regarding whether a treatment or medication is "covered" or not.  There is not one guarantee or absolute in medicine.  More later as the drama unfolds...

The infusion clinic has become a familiar place with pleasant nurses and personal acquaintances.  Stress from my talk with the insurance nurse has me more rigid than normal.  A comment is made concerning my stiffness.  I hold on to the table as the nurse administers the vein-seeking poke.  I feel my torso flinch in protest, but the repercussions do not, thankfully, reach my arm.  One try and we have a gusher.☺

One of  my routine infusion highlights is ordering lunch.  Amy, one of the clinic nurses, redid the menu.  It looks very attractive.  I have the choices memorized, but selection is always difficult.  This is a serious thought-provoking moment of the infusion experience, choosing my food.  Lunch is usually pretty good.

I enjoy meeting the various people who come for infusions or shots for different chronic illnesses.  We can play the game of "What do you have?"  It is interesting to learn about the many autoimmune diseases.  One man is there every time I go.  Names are unnecessary.  We know one another by illness.☺  He has pulmonary fibrosis.  He gets shots three (?) times a week.  Some days, he does not feel well.  He is always very friendly.  He works in the healthcare field and wears the colorful attire of the trade.  He was pleased with his Friday's ensemble, black pants and a demure black print shirt.  As he and I discussed, it was more masculine than the flamboyant turquoise and purple of some of his previous outfits.  He accented his attire with a black hoop earring.

My infusion was uneventful.  This is a good thing.  As is the case with many chronic illnesses, you do not look sick.  I am aware that many do not perceive the seriousness of Stiffman Syndrome by looking at me.  One younger man came in as I was finishing up.  I did not get the chance to talk with him.  He looked very healthy.  He had on shorts and sported nice legs.  I noticed he had a percutaneous intravenous catheter, pic line, (Medical lingo in case you want to look it up.)☺ so he was having more than one day of medication administered.  Since SMS, I no longer prejudge anyone who parks in a handicapped parking spot.  It is misleading, the wheelchair icon for disabled.  Disability goes so much deeper than the inability to walk.

I am thankful my disability is physical.  I would not want to be disabled in my heart, thinking, or in my humanity.

July 15, 2004

They say lightening doesn't strike twice in the same place.  I have always wondered at the mysterious "they," who come to erroneous conclusions quoted as fact.☺  I have said, "I do not have a gene pool, I have a genetic cesspool."  (I like my inherited high cheekbones.)☺  I lost a child to a genetic neurological illness, Werdnig-Hoffman, and my mother was diagnosed with a dystonia, torticollis, approximately five years ago.  I am told the dots do not connect between the three illnesses.

Moment digression - I was actually asked by a very enthusiastic young neurologist, at the beginning of my SMS diagnosis, how it felt to have two exotic illnesses in my family. (!!??!!)  Exotic?☺  I am sure anyone desperate enough to read my online ravings about SMS is someone who can relate to me.  If so, (Odds - one in one million.) you have had contact with medical personnel who need a crash course in Bedside Manner 101 or Basic Mediquette.☺ 

Dystonia is a movement disorder.  Torticollis is a form that involves the neck.  My mom has continual pulling and spasms that draw her head painfully to the left.  She is on similar meds as me, baclofen and a benzo.  She receives periodic botox injections in her neck to help deaden the hyperactivity of her erratic muscles.  An EMG syringe is used to gauge which muscles are the most contrary.  Snap, crackle, pop.  From an emotionally disengaged perspective, it is an interesting procedure to watch.

Yesterday was her botox day.  As is the case with most "exotic" illnesses, there is not a hometown specialist.  You travel.  Round trip, with two meal stops, took twelve hours including the twenty minute visit with the neurologist.  (Priceline.com did not have any specials for "botox and a burger.")☺  From a personal interest angle, it was great fun for me.  My daughter learned that Grandma had dated, some never-before shared details, and she was given a glimpse of her grandma as a young woman.  She admitted she would have liked to have lived in Grandma's time. 

The botox destination has the imperial name of "Neurological Institute."  As the name implies, the lame, gimps, non-movers, and shakers converge with assorted modes of gait-aids for their respective appointments.  This is one time I am not a specimen.  I am a waiting room extra.☺

I watch with interest and understanding the various movement handicaps of each afflicted individual.  I really see the lady in the motorized wheelchair.  The wobbly leg weakness and dependency on a cane of the man checking in tug at my emotions.  My mom has on her neck collar with her head resting against the wall.  Looking deceptively "normal," I feel like a fraud because I am one of them.  I want to reach out, touch, talk to, and hug each one.  What is your story?  How are you?  I know.  I always feel a sense of mutual unfairness when confronted with another stricken individual.  Maybe it is looking in the mirror of illness instead of just peeking out.  I feel pain for all of us.

Mom's neurologist is a sweetheart, petite, pretty, and compassionate.  As I have asked for the last couple of years, I ask again.  "Do you have any Stiffman patients?"  I, again, receive the familiar negative response.  We talk about the GAD antibody titer in other illnesses.

It may sound strange, but I enjoyed yesterday.  Getting lost in my thoughts, admiring the scenery, and spending a day with my family was nice.  It is always sobering to see others in similar physical situations but good for me.  Focus is reinforced on the big picture of others and keeps self-absorption in perspective.  Having my daughter look at her grandma with a sense of peer kinship and awe was priceless.  Even my husband was amused.  Yesterday's moments would not have unfolded as they did had it not been for illness.  The sun is always shining on the half of the world not enshrouded in darkness.

A nostalgic toss - a weekly radio show, Mr. King, Tracer Of Lost Persons.☺

July 13, 2004

We were watching a television show about magic.  The participating woman was put into a zone (Can relate).☺  She was lifted and placed between to cushioned footrests - her head on one and her feet on another.  There wasn't any support for her body and she lay perfectly straight, suspended, and still.

My husband turned to me and said, "You could do that."☺

I need an agent.

July 12, 2004

The Saturday before last was pizza and movie night.  One of the features we settled for was a 1994 film, Mary Shelley's Frankenstein, starring Robert DeNiro.  I have seen many film depictions of Frankenstein in my life.  For me, the most impressive three in my memory are the immortalized Boris Karloff horror films, Gene Wilder's comedic spoof of Young Frankenstein, and the lovable, timid Herman of The Munsters.

Robert DeNiro's role of the monster moved me, from a Stiffman Syndrome perspective, to finally read Mary Shelly's novel.  While the 1994 film is the closest in accuracy to Mary Shelley's book, the film took some creative cinematic detours.  I was deeply touched by Robert DeNiro's portrayal of the monster in the film and Mary Shelley's 1816 narrative.  (Ms. Shelley is beautifully expressive and eloquent.)

Frankenstein's monster gripped my insides with a parallel empathy with having Stiffman Syndrome.  He is a created being, alone, misunderstood, and isolated in his monstrous deformities.  He has questions, is afraid of what he is, and yearns for acceptance, understanding, and love.  In his quest for knowledge, answers, and acceptance, you see a depth in his character and feel his loneliness and aloneness.  He watches the world, in which he so wants to be a participant, from a tiny peephole, hiding his difference from humanity - a longing spectator.

Aversion to his hideous physical difference and imposed isolation wrack his soul with a pain so deep that he lashes out in destructive rage.  He seeks his creator, Dr. Frankenstein, with a simple request - make another like himself, a mate.  Together they will hide from the world and have each other.  Frankenstein looks at the atrocity of his creation and questions creating another such being.

I was seared to my heart.  Stiffman Syndrome.  One in one million.  I understood feeling like a freak.  I had/have many unanswered questions.  I lived the aloneness and loneliness of desiring to know another such as I.  I was torn to think of another living with my illness symptoms while desiring the understanding that only one with Stiffman Syndrome could know.

Unlike Frankenstein's monster, I was blessed to make contact with others like me through an email support group.  Acceptance and understanding unlocked the bonds of loneliness and aloneness.  I am not the cursed abhorrence.  My illness is.

Mary Shelly gave me a valuable gift of serious reflection with her story.  Frankenstein was a powerful and surprising inner analogy of Stiffman Syndrome for me.  Thank you, Mary Shelley.☺

July 11, 2004

As Forest Gump said," Life is a box of chocolates.  You never know what you are going to get."  Life with Stiffman Syndrome is not a box of chocolates (A Pandora's box would be more appropriate!) but you still never know what you are going to get.  Sometimes, just moments within a day are hazardous to your health.☺

I woke up and felt pretty good.  I thought I would iron a couple articles of clothing.  I always hated ironing.  I do not know if that was the trigger or if SMS just decided to be mischievous.  (Maybe because of my aversion to ironing he thought he was being helpful?)☺

My back started drawing and became very tight.