The Best Side Effect is Staying Alive

1999

In the real world a person hopefully learns to read.  When cerebral 

damage occurs that can become an adventure in the bizarre. More on this later.  Ask any vet coming home from combat.  The problem that I was having is that all my damage was taking place in the present time, each flare causing more and more gray matter in my brain.  That pretty MRI became more and more mottled hinting at the dysfunction that kept marring the matter  between my ears.  Massive doses of prednisone were not halting the onslaught.  The enemy was winning the battle, and I am the one bloodied, battered, and bruised.

From the outside someone suffering with Lupus may appear perfectly normal.  Only upon closer observation does one begin to see the constant bruises from steroid use, that telltale moon face, and seemingly unrelenting fatigue.  As I said, I looked perfectly normal to people who "knew me when" -  that mystical before I was sick time.  My symptoms had become so bad that my neurologist and rheumatologist began a meeting of the minds with my internist where I live.  Another challenge I may have forgotten is that I live three hours one way from the specialists that were helping me to find my life.  That might as well be another continent when dealing with a woman who is blacking out on the way home from the grocery store.

"We want to try chemotherapy," Dr. Chintis said.

"Huh?"  

I don't have cancer. . . . 

"It may be the one thing that can stop this beast from taring you apart" he said. "We will start with a low dose of cytoxin followed after the three week course with injections of  methotrexate."

"So the side effects are . . . . ?"

"You staying alive to battle another day." 

So began my every other day visits to the IV Therapy Room at Navapache Regional Medical Center. This is where people go to die! The nurses were either Debbie or Debra depending on the day, and to me it seemed to be an excessively cheerful room that people came to pretend they were not dying.  Am I dying? My mother had chemo after a mastectomy and that ugly c-word! What are the side effects?  I slowly learned that cancer and malignancies are side effects of small giant doses of poisons, and my mother who went through chemotherapy and did not loose her hair gave me the magic cocktail of what herbs kept her hair growing.  This coming from a woman who had a thicker head of hair than I.  Why am I worrying about my hair? Who gives a shit as long as I am here to see my daughter get married and have a life? Maybe grandchildren?  

The best side effect I could see at the moment was staying alive.  

Learn about treatment options and medications at the Lupus Foundation

The Sticky Part of Being Well

2011

After completing a Bachelor of Science Degree in Integrated Humanities through Northern Arizona University I felt like I was safer on the couch.  Funny thing is that lately the couch has felt a bit more comfortable than life.  This may not seem unusual to anyone, but as someone with an often paralyzing disability I was again forced to redefine my limitations.  Do I have any limitations?  How do I live life to its fullest while caring for a body that loves to malfunction at the slightest imbalance? 

In July I found myself faltering with the stresses of event production.  Usually this lands me in an illness state and it did just that.  After a brief stint in the hospital I was sent home to regain my strength which occurred fairly rapidly.  Days blur into months as they often do for everyone and suddenly it was the end of September.  I had signed up to attend a women’s retreat for the first time in years, confident that I was feeling strong physically yet needed a recharge spiritually.  I had joined my mom for shopping and lunch before a check up at the doctor on Thursday before leaving on Friday for a weekend of serenity.  At JC Penny’s I felt a bit light headed and had to sit down fairly suddenly.  My mom took me to the doctor where they brought out a wheelchair for me to sit in after complaining of dizziness.  It is times like that when a medical office seems a place of fear, and everyone present is glad they are not as sick as me.

With a blood pressure of 80/54 it was suggested that I head to the IV Therapy department to receive some fluids in an attempt increase my blood pressure.  This is the land of chemotherapy where the really sick folks go to live or die.  I have been a guinea pig on chemotherapy before in an attempt to slow the disease process.  These caustic drugs destroy a person making veins twisted and scarred. I am going on a retreat tomorrow, no matter what.

I am not sure how long I sat there while the experts in difficult intravenous placement stuck me with a needle, attempting to get what is called a “flash” signifying success in finding a vein.  I had learned long ago how to achieve a trance like meditative state, removed from the horrors of the present reality.  Over and over, nurse after nurse, they tried and failed.  My mom said she counted at least thirty times.  Thank God for meditation.

“We can’t get an IV started. No. Yes we have had four different nurses try including one from neonatal ICU. Okay we will send her over to emergency.”  Yes Doctor. The human pincushion is on her way.

As I lay on one of the few couches in the local emergency room my mother located the phone number to the retreat organizers so I could call and cancel my reservation.  Waiting to be seen in the emergency room is a valid reason to receive a refund though not very conducive to serenity.

1998

Only ten percent of patients suffering with SLE (as Systemic Lupus Erythmatosis is called) are challenged with central nervous system and brain involvement.  Living with pain became a constant state of being.  Doctors are often unable to cope with a patient in chronic pain, yet the interesting thing about pain and pain medication is that real pain precludes a patient becoming addicted. During this time of scary shit diagnosis and body malfunction I had a doctor.  A skin faced angel to borrow a friend’s phrase.

“You practice medicine Dr. It is not yet perfected."

“Acupuncture is not proven to do anything other than appease the patient and drain the wallet,” he said looking serious.

  He knew that I was on the waiting list to see Dr. Andrew Weil at University of Arizona Medical Center outside of Tucson.  Finding a way to alleviate and cure illness by combing natural, eastern, and western interventions had become my only hope.   I refuse to take morphine even time released morphine!    After one injection in the emergency room kept me from being admitted to the land of wind wept asses, and I was able to go home and balance the family checkbook. Finally I can think clearly and perform basic math!  Pain creates stress and stress creates a flare with chronic diseases.  I was in fear of addiction. Does taking this miracle make me less sober?  Not any more than a choice to allow a practitioner of Chinese Medicine make me a junkie!  Anything that will help me find that elusive word "well" is worth a shot.  Thus my livelong gratitude to the eastern philosophy and medical approach was born.  

For more information on the program in Tucson and how to find a practitioner in your area follow the link - 

Arizona Center for Integrative Medicine

Me and My Shadow

2004

Stress is a deadly captain holding the wheel of any vessel with Lupus in the cargo hold. Any shift in perception and inner peace can go overboard, letting loose the Kraken to wreak havoc on everyone close to the disease. I had gotten married in 1990, for the first and last time.  No relationship is perfect, and certainly my marriage was filled with many happy memories and the blessings that  a child brings.  She was like a keel helping to keep me on course as the waves of life came in and out.  The problem was simply that the tide of despair pulls with an undertow that slowly had begun to wash away the joy in life.  How to leave behind the warped perceptions of a fear filled life?  Was I afraid to die or simply afraid to live? 

My marriage had sprung leaks long before the day I realized that  the holes were too big to fix even if I was capable of doing the job alone in the fall of 2004. I sold my soul a nickel at a time to the pirate who had been keeping the ship afloat for sixteen years.  Is this why I did not notice my soul was a shadow lurking behind me like Peter Pan’s,  trying not to get reattached to the directionless woman being tossed about in the storm?  My daughter was my joy. My life’s purpose had always been to help her grow into a healthy woman both physically, spiritually,  and mentally. I was not teaching by example.

I am not physically, emotionally or spiritually well. I am showing her how function in a completely dysfunctional relationship!  I am killing myself with denial in the name of Lupus and showing her how to dance with the devil too!  Repeat the land of funny jammies.  Repeat menu.  Repeat nurses. Repeat beep beep beep  the song of my constant companion the IV pole dripping Solu-Medrol into my veins blending with the morphine-ativan cocktail that keeps my soul inside of my skin.  There is plenty of time to think while trapped in a sterile hospital hoedown. Antiseptic ideas strip away the layers of pain, and I was left with the causes and conditions of my situation. I have a dis-ease and for that I am not responsible.   I am responsible for my willingness to accept reality.   I am responsible for my actions that promote wellness as well as  those actions that do not.  I am the only person who can decide what relationships are not healthy and which ones are nurturing in my life.  

The neon light began to flash on and off in a surreal display of hidden personal truths. Reality under the covers. Crisp white linens covering up the self deception.  I felt miserable. Physically. Emotionally. Spiritually. That was real, tangible.   Waves of dark  despair washed over me, through me, into every cell of my being.   How can I teach her how to be happy when I am not happy myself? I am teaching her how to stay stuck in a situation that leaves no hope, little love, and a constant gnawing fear of the future . . . of the present!  She is learning all right!   I  have become a toxic waste dump of despair with hopelessness futility weighing down my soul.  An anchor sinking the ship. Time to make a decision.  I walked away from my shattered fairy tale dream of a happy ending.  Little did I know that the fantastic voyage lay ahead.   

 Time to write my own happy ending. . .

Alien Invasion

1998

Who is that?  I gazed into the mirror wondering who was staring back at me.  I am someone who had battled eating disorders as a young woman. The rapid transformation of a body on prednisone is intensely disturbing.  Odd hunger drives a soul to feed, yet the logic in realizing that suddenly you have eaten the whole loaf of sourdough bread brought home from the bakery with butter oozing into the warm tangy deliciousness is insane.  Looking at the destruction of our spaghetti dinner’s friend I gasped in horror.  Bite by bite the transformation occurred.  I don’t remember eating that . . . . no wonder I look like an overstuffed cannelloni with eyes.

The funny thing about psycho steroid bitch is that I had no idea she was present until after the destruction.  Usually this happened at the cost of feelings being eviscerated by her acidic tongue.  I would find myself obsessing over the tiniest inconsistency in cleanliness, dress, or some other ridiculous detail.  Imperfection is the enemy she would think, all the while walking through life looking like some circus freak and attempting to act like no one notices.  Going to the grocery store, my daughter’s school, or anywhere feeling like there is a bulbous alien representing is a pathway to insanity.  I learned how to take steroids, one blast at a time, in order to avoid the visitations of the being from another planet who would invade my body. 

1999

Tonsillectomy, thyroidectomy, appendectomy, gall bladder, hysterectomy, shoulder surgery, foot surgery, angiogram.  I look at the emergency room nurse as I rattle through the surgeries, all but the angiogram having been performed at the same hospital.  History is one thing but having to memorize these strange medical terms for you cut another scar into my malfunctioning machine gets ridiculous.  Visiting the land of funny jammies is not my thing, but it seemed to happen on a regular basis as my body shifted from well to not.  Learning to recognize that one side of my body did not feel the same as the other was an exercise in self honesty.  This trip began standing in front of my bathroom mirror with a toothpick, slowly poking one side of my face and then the other in some surreal attempt to verify that I was crazy.  The only thing eventually confirmed was that the Sesame Street song “one of these things is not like the other” kept running through my thoughts in some maniacal way.  Am I having a stroke at thirty five years old?  Succumbing to reality I found myself attempting to explain to an overly kind registered nurse what was going on in my body.  Her blank expression led me to believe that she had no idea what to make of this moony faced woman with Lupus Cerebritis.  After getting me into bed I was hooked up to my friends the monitors who began their beeping song.  At the first blood pressure reading it was obvious that I was not imagining that something was amiss.  186 over 110 are not anywhere near normal!  When the mystery machine arrived in the shape of not Velma, the nurse stood there looking at the readings.  “Let me get the doctor” in a calm panic squeaked out and in that moment I felt validated and not psychotic.  

Faith

1999

People can take for granted the little things in life are simple to accomplish.  I had applied for disability insurance after being dropped like a five million pound hot potato by my insurance company.  This after finding a $7000 error on the part of Navapache Medical Center Emergency Room coding for some heart medicine administered during the first fifteen minutes of a heart attack.  I am NOT having a heart attack at this point in my life!  I had finally begun to feel better after being put on the magical drug Prednisone.  Interestingly it is the one pharmaceutical that is proven to reduce serious inflammation and brain swelling; its side effects are horrific though.  Brain swelling and scarring is considered serious I guess?  Discovered in 1954 scientists found that cortisone could be microbiologically oxidized to prednisone by the bacterium Corynebacterium simplex.  The side effects include softening of the bone due to calcium depletion, thinning of the epidermis, weight gain, and the “moon face” that marks anyone on long term steroid use.  What they, them, or collectively known as “the medical profession” neglect to discuss with patients is the emergence of the evil twin, psycho steroid bitch. 

I had driven my daughter to the mall in Mesa as a treat getting ready for school.  We began wandering around the mall and went up to the second floor.  As we got ready to go back down I watched a seven year old jump on and grab the rail holding on, looking back at me and smiling. I walked up to the moving staircase and looked at the slope of slats moving like a glass gray missing definition and depth.  I balked digging in and refusing to move.

“Come on mom!”

I stood there shaking my head back and forth slowly, not moving.

“Hurry!”

Suddenly she was standing next to me tugging at my hand, trying to move me forward. 

“What’s wrong mom?”

I could not figure a way to explain to a kid what I was trying to comprehend that I didn’t even understand.  The escalator was like a sheet of gray ice sloping down to the bottom of the mall.  Frozen like the downward ski slope I was staring at, my daughter did not know what to do.

“Close your eyes.  Take my hand”

I did as she asked and stepped out in faith.

And the Beat Goes On

1998

BOOM BOOM BOOM clackclackclackclack. BOOM BOOM. 

“Okay you are done!”  A cheery disembodied voice from nowhere made this announcement as if I could do anything but breathe. They had told me the test would take about an hour in the torpedo tube machine called the Magnetic Resonance Imaging Machine.  Space aged jargon for a torpedo tube in a hospital that makes fancy pictures that cost quite a large amount of money and sounds like it is going to explode with you inside.  The Mayo Clinic in Scottsdale, Arizona is a geriatric marching ground for the not quite dead and somehow I just did not fit in as a member of the green Jell-O set.

I was marched through a battery of tests to figure out what was wrong “under the hood” so to speak.  Samples of every shape and substance, tests with electrodes tapped into my brain like acupuncture without the wisdom of a thousand of years of eastern medicine’s practice.  Going from one nameless doctor to the next, the one constant being the tuft of gray hair tinkling every day at the grand piano in the lobby like some misplaced sidekick for Benny Hill.  I wondered if he was just propped there with a hidden player piano mechanism somewhere nearby.  Perky.  Cheery. 

This place smells like old people and death in some odd dance of efficiency and stool samples.  The one nameless face I dreaded most was the neurosurgeon commandeered to investigate the alien in my brain.  On the third day of a four day run of the machine called super expensive health care I met with the man in white to discuss the results of the MRI film that I had sent prior to my visit as well as those from the torpedo tube in Scottsdale.

He breezed into the room, a geek with glasses who unfortunately looked like he could have been a regular on General Hospital as Doctor Mcheatonyourhusbandwithme.  As I gave in to his bespectacled blue eyes I became aware that he was talking and pointing at the colorful images in the viewer.

“And here Mrs. Bucey is the culprit.  A tiny nodule about the size of a pencil tip.  nicely sharpened.  The neurosurgeon referred to you by your neurologist is a bit daft to suggest the necessity for removal of this.   Chances are this will grow a millimeter every ten years, and the only reason it was found now was because of the swelling in your brain caused them to go poking around up there with an expensive camera shaped like a torpedo tube.  Good news is we have verifiable proof you have a brain.”

Did you say daft?  After all the years of school these guys do?

“Should anyone ever suggest that you need to have this removed please come see me.  I will either be here in Scottsdale or at the Mayo Clinic in Rochester, Minnesota.  Look me up.”

He flashed me a smile that was worth more to me than his fancy education and extended his hand to shake mine.  Locked in a gaze that was knee buckling handsome and immensely reassuring at the same time, I was grateful to be sitting down.  He breezed back out of my life not yet to be seen again.  I am saving that one for when someone practicing medicine decides they need to stick forceps up my nose and go fishing.

Blindsided

1992

My daughter was born in 1991, and it was not long after that fabulously painful life event that weird things began to happen.  I found myself driving and not knowing where I was even though I was miles from my home in Globe.  Pulling over onto the side of the road, I was forced to find my way in the blackness that swam in my vision, creeping forward in the middle of the daytime until I was able to turn off the engine. I found myself looking out eyes that did not see in anything other than a rolling tunnel vision like a speed reading machine.  Moments across the page of my life spotlighted and blacking out the rest of reality in case I might wonder. Silently sobbing terrified woman with newborn at the side of the road report at 5 PM.

 My husband was manager of the truck shop at the mines nearby, keeping the behemoths carrying ore for processing.  Sometimes he would work for twenty four hours at a time.  Leaving me alone with a new baby, I was barely able to care for myself.  I was huddled over the steering wheel of our black Toyota Celica, tears blinding my already dimmed sight. I heard the familiar diesel engine slow down as he pulled up beside me.  I heard a door shut and sensed his presence nearer to me as the gravel sounded the alarm.  He smelled of diesel fuel and cigarettes which was surprisingly comforting.  He opened my car door and put his arms around me, holding me as I leaned into his familiar shape.  Our baby was asleep in the car seat; I sat there silently crying so I wouldn’t wake her up.  Feeling desperately alone in the shrouded darkness of daylight, my husband calmed me down as our daughter awoke. 

“Can you follow me home?  It’s not far, and I will be right ahead of you.  Drive as close as you can so you can see the tail lights.  I am going to go slow so just do the best you can and we will get you home.”

I would fall asleep folding clothes, sitting on the couch like a narcoleptic idiot with a baby.  Our wolf Ozzie would watch over the baby letting me know if she needed me.  We had a pair of sibling Akita mixes who would take care of me, staying close, laying at my feet.  Buck and Kiki would jump any time I twitched.  Thank god someone was taking care of me!  I groped my way along the highway on that blacked out morning.   I turned up 4^th Avenue creeping up the hill behind the giant white service truck with a crane mounted across the top from back to front.  We turned into the driveway like synchronized swimmers preparing for the final movement of pointless beauty.  I reached up and turned off the ignition, popping the clutch in jerky exhaustion.  Made it home, four miles, with a crying baby in the car seat and all I could do was cry along with her.