The Wolf

It is snowing right now outside, covering my immediate world in a blanket of white that mutes the sounds of life.  How I came to be living in the northeastern portion of Arizona I am not sure.  I grew up near the ocean. The sound smell of surging tides is where my body and soul find an unearthly connection to peace.  Only by its absence does the heart and soul really know what nourishes its existence.  

I outrun the wolf…

My journey began after the birth of my daughter and the natural hormone changes brought about by pregnancy, childbirth, and nursing a baby.  I have been reflecting as 2012 draws to a close how the disease of Lupus has changed my physical being with its internal assault on my brain and central nervous system. Those aberrations have occurred in chorus with the changes to a person’s framework known as a skeleton.  Like many allopathic remedies, the drugs that stop disease processes often cause irreversible harm. Prednisone sucks the strength from bone but it has also given me life.   Do I feel as though I suffer from a lack of bone density?  Not really, though that perception may change once I fracture more than a toe or finger. 

Treatment for Lupus Cerebritis ranges from massive doses of Prednisone, its liquid cousin Solumedrol, Methotrexate, and various forms of chemotherapy.  A filled prescription for Azathioprine takes up residence in my medicine cabinet intact.  Toxic poisons to make me well – oh the irony!  Do not get me wrong, I am grateful for being the “guinea pig” when it comes to how to stop an unseen monster creeping through the recesses of my body and brain.  I guess the evidence of Lupus Cerebritis can be seen.  The scarring in my brain is the evidence according to the radiologists that read the results of any MRI.

 I dance with the wolf…

From there to here is a story and this is the “Reader’s Digest Condensed” version of this life.  I have not written in this blog for a few months, mainly because I came to another turning point in Lisa’s life with Lupus.  Suffice it to say that the first six months of this year only showed me that I would need to find a greater understanding of what wellness means.  More importantly I was shown that the willingness to live and embrace life requires sacrifice.  I guess that I somehow felt I might have some input in the form that sacrifice might take.  Silly me!  Learning to dance is a process, and first one must learn how to walk.  Learning to walk means an individual must learn to stand, and the only way that I could balance was to realize the wealth of family and friend there to lean on when I need them. 

I run with the wolf…

I was diagnosed with Systemic Lupus or SLE in 1983.  I was told many people live a fairly productive life after diagnosis.  Some spend their life on a couch.  Since that discussion with my firs rheumatologist I have buried my father, finished a degree and gradate with honors, divorced after fifteen years,  started my  own  business, watch my baby grow into a terrific young woman,  swam with sharks off the Great Barrier Reef, been published in the National Gallery of Writing, and work with some amazingly talented people.  I am pretty sure you get the picture. 

Not bad for someone who was told by doctors in 1995 that I would likely be dead within ten years after my diagnosis of Lupus with brain and central nervous system involvement?

I outran the wolf...

Happy to prove those medical professionals wrong this time.

www.Lupus.org 

What is Lupus?

General features of Lupus

It should be made clear that although Lupus is a complicated illness, capable of affecting almost every part of the body, the majority of patients suffer from only a small number of the long list of features described.

Few have heard of lupus, yet worldwide it is more common than leukaemia, muscular dystrophy and multiple sclerosis. Some 30,000 people have the disease in the UK, of whom 90% are women. However, men and young children can also have lupus.

Lupus is a condition whereby the body's defence mechanism goes into overdrive and starts to attack itself. The symptoms are many and varied and the illness seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the GP or consultant is alert to lupus.

The name "lupus" comes from the Latin meaning wolf and refers to the erythematous red ulcerations on the face. Systemic Lupus Erythematosus (SLE) did not acquire its name until the middle of the 19th century. Lupus is a chronic autoimmune disease, characterised by exacerbations and remissions. Although there is no cure, this does not mean it cannot be controlled. Sometimes, patients find in their forties and fifties that their symptoms settle and they can come off all therapy. Although people of any age can suffer from lupus, women outnumber men by nine to one. It is a disease of young women, the peak age being 15 to 40 years.

LUPUS IS NOT CONTAGIOUS

. . . but can be triggered:

• at puberty
• after childbirth
• through sunlight
• during the menopause
• after viral infection
• as a result of trauma
• after a prolonged course of medication

Features

The most common features are:

• skin rashes
• joint pains
• profound fatigue

Other features include:

• heart and lungs
• involvement of the central nervous system
• anaemia
• hair loss
• kidney disease
• mouth and nasal ulcers
• eye problems
• gastrointestinal disorders
• vasculitis

It is important that patients should only read literature about Lupus that is not more than five years old. This is because, until recently, Lupus was widely regarded by doctors as a dreaded disease, progressing to kidney disease and usually fatal.  

My Immaculate Conception

I sat there staring at my doctor.  This new rheumatologit just keeps telling me I am going to die.  Everyone is going to die.  Too bad she looks like one of my former Brownie scouts all grown up.  This Girl Scout turned young college student is a hoot, so I just keep nodding my head as this "doom and gloom from womb to tomb" fear monger with a white coat keeps repeating herself.

"You need to be taking Imuran!  You need to be on Plaquenil! You are going to die!"

I just keep smiling a tiny grin and nodding.  Three weeks before I had gotten my lab results from the hospital that showed my liver to be in a pre-hepatic state.  

For months I had been walking around with an abdomen that looked like I was carrying a five month old baby.  Problem was I had a hysterectomy in 1997. No unborn child in there other than whatever dysfunction my friend Systemic Lupus had created without my knowledge.    Since the fall of 2011 me and the land of funny jammies had become quite close with a visit every five weeks or so.  Thankfully those lab results in June had helped me give birth to a new idea, one radical and scary.  How can I help my body heal??

The new ideas baby was born!  Willing to push out any concept or perception that kept me ill, I went to friends who had helped heal themselves of issues relating to fibromyalgia and liver dysfunction.  Asking questions, I began a liver detoxification process that has included juicing and living a vegetarian lifestyle.  Giving up sugar is a bitch but would you if it gave a life free from disease?  

The short of this experiment on healing and wellness has placed me in a unique position.  Years ago I had given my spot on the waiting list to see Dr. Andrew Weil to someone much more sick than I.  The one thing that I was able to convince my rheumatologist of was to order a repeat of the tests that came back so hellishly out of whack.  I went in and had those drawn yesterday. This hard stick would send lab techs on break.  

Reporting in that after one attempt a solid vein was hit that did not collapse which is a miracle in itself.  The second miracle was that four vials of blood were drawn and filled to the top in five minutes.  No this is not a vampire show.  It is the fact that a patient can say no to the doctor whose treatment may give them symptoms through medications prescribed that may create a different kind of living death.  

More on my immaculate conception . . . .

University of Arizona Center for Integrative Medicine

The Merry-Go-Round.

Have you been away?  It seems that I have pondered that question over the past few months.  The joy of writing a blog and living with a chronic illness is that sometimes the dis-ease takes over.  In this moment I sit here wondering how I got to this place again.

Guess I better clue you in to the next part of the journey.

Five years ago I gave up being sick.  The vegetarian boyfriend helped as I became someone who ate VERY well for the state of wellness to take hold.  Stress elimination is my favorite stress management.  Fast forward to this past nine months.  Finding myself in the hospital over and over again, nearly every two months or so, I thought maybe it was time to go back to the specialists.  Living three hours from where the practitioners practice, I willingly walk back into the cycle of driving, doctors, tests, and the merry-go-round began.  This last week included a visit with a rheumatologist to see what she could find out about how to get off of the merry-go-round.  I have been a passenger on this ride before.

New patient visits are always fun when a person like me has been living with a disease like Lupus since 1993.  The questions, the history, and more importantly what I am willing to do as a patient to play in the land of western medicine.  My experience has shown me that tests don't often tell the tale, but I have not had the full battery of tests checking my disease in years.  I left Dr. Crowley's office on Monday with twenty different lab tests. Can I hear an "oh my gosh!"

At the lab this morning I was told that there would need to be seven vials of blood drawn to cover what the doc had ordered.  Oh but let me back up.  The doctor's office had called this morning after reviewing records from my last stay in funny jammies right before the benefit for the United Food Bank a few weeks back.

"Doctor Crowley wants to put you on Imuran immediately."

Imuran is a pretty toxic friend for those with inflammatory or immune system malfunctions.  I took it years ago, a chemotherapy whose first side effects are malignancy.  To really understand what I am talking about follow the link  IMURAN (asathioprine) where the fun really starts.  My father died from lymphoma.  My mother is a breast cancer survivor.  I really try to avoid any drug whose first "side effect" is malignancy or cancer.

My rule in the land of practitioners of medicine is a bit like Missouri - show me.  I went to the lab, found out exactly how much blood they were needing, got stuck three times and sent away unsuccessful in providing the materials needed for tests on my anticardiophospholipids and neat stuff like that,  Tomorrow is another day I say.

In the meantime I write,  If the blood doesn't justify the toxicity of the cure, no is a complete sentence.  I am well right now, in this moment.  I hate being scared but in reality none of that changes the reality of my dis-ease.  I have missed you all, the ramblings of my soul.

One thing I know about the merry-go-round is that I can get off the ride any time I want.  I can and do have the right to say no to treatments that can cause severe harm along with the good.  I guess it is today that I will go see the vampires.

In the meantime I promise not to stay away so long or don't let the illness get you down.  I will let you know what happens next - to chemo or not to chemo, that is the question. . . .

Now

Here I am again.  Now.  A moment in a life that seems to blur from one steroid sweat induced coma o pain killers and fear.  Contrast shows nothing.  Medicine knows nothing.  Only in the hope for another day break do I try again.

This is a blog written by a woman living with Lupus Cerebritis.  Only in the hope for tomorrow do I find the strength to go on today.

The Imposter

1998


Lupus is a wicked parasite that robs the host of energy, time, and if not careful dreams.  At the moment I had none of those previously mentioned attributes, just that impostor Moon Face that kept taking over my life.  I would hear me and see her when I looked into the mirror, a hellish caricature .


 Crazy how she doesn't seem to notice . . . .


My daughter still smiled at me the same, but was it me that saw the fear in here eyes?  Was it my fear reflecting back on her innocence?  It doesn't matter.  What matters is that I am here for her now.


2012


I have no idea how many of those "first days of school" were missed along the way to this moment.  As I watch her prepare to move off to university it saddens me to know that part of her dreams will always include memories of when I was not there while she grew up.  Now I look in the mirror seeing a version of me who is not a reflection of the Moon Face.  I also see a woman who is longing for those days in 1990 before I started feeling like a narcoleptic crazy person falling asleep in the middle of the afternoon.


1991


I loved being pregnant.  Somehow womanhood brought to me a sense of well being.  Glowing I wander about my day expectant to meet the life that was becoming.


I need to remember to tell the obstetrician about the narcolepsy thing. . . .


I still feel her kick me, those wiggles forever imprinted upon my soul.


2012


Lupus has robbed many of us who suffer (not excluding family here) of moments.  The missed chances to be present at the send off to the first day of school.  The chance to go on those family events or vacations robbing memories from the book of life.  Chemotherapy robbed me of the thick luxurious hair that hung down my back as a child.  Moon Face Lady has not been around lately.  As the next phase of life as a mother begins I reflect back to all of the times that my  child of Lupus is a parent to the parent afflicted.    I was blessed to complete a degree at Northern Arizona University last year and see the pride in my daughter's face after the ceremony.  Now as I look forward to the last day of her junior college career and the first days of her university career I realize a few things.


I may have missed holding her hand on the way to the bus, but I have not missed being a part of the school of life.  


Damage from the scarring footprints Lupus has left on my brain present some challenges.  I do not look disabled on the outside, and I am pretty good at hiding it to the outside world when I feel it happening. The experience of a disease like Lupus has left me ready to walk into the next chapter of my life as my daughter walks on to the next chapter in hers.


 The only way I will miss any part of life is if I fall asleep again while I am typing  the next sentence and never wake. . . . damn you impostor!  


Guess I am still here . . . 



More on Brain Dysfunction and Lupus

The Sticky Part of Being Well Part II

2012


If there is any positives to living with a disease like Lupus or any chronic illness I must say it is the doctors that you may stumble across while visiting the emergency room.  After being diagnosed with strep throat a month or so ago I found myself in the land of funny jammies.  Again.  This time respiratory difficulties made it necessary to get antibiotics of which I am allergic.  The irony here is that in order to start administering medication prior to me ending up in real distress like this isn't? nursing staff brought in an anesthesiologist after the staff vampires could not find a vein.  


Needless to say that this guy came from the operating room, freshly scrubbed, and upon entering the curtained cubicle got my nearly seventy eight year old mother gesturing at his incredible Adonis like physique and ruggedly handsome good looks. All this happening while I am waiting to have a needle stuck into my jugular . . . .


I am recovering, albeit slowly.  In the meantime remember there are laughs out there even when Lupus is being a real pain in the neck . . . 




Lupus and the dangers of  Streptococcus  presented by the Lupus Foundation of America . . . 

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. 

I Walk Among the Living

Alive!

I walk among the living.  In 1993 I was tested for systemic lupus erythmatosis, a really long word for immune system malfunction.  That really big word means a really grand malfunction that simply translated is an almost the complete antithesis of AIDS. Pregnancy brought out the best in a disease that loves hormone changes, afflicts predominantly women, mostly of childbearing years.  Guess I walked right into that one.

1996

 I am alive.  My thoughts described feelings of terror after the diagnosis of brain involvement and a tumor growing alien near the pituitary gland.  Brain swelling had forced me into the hospital until the menu had begun to rehash green jello and repeated mush.   Crisp white sheets and cheerful nurses were stained by reality. Being friends with the radiologist afforded me a different level of care above and beyond what my insurance would pay. He strolled with the mannerism that being a lifelong hippie and Grateful Dead head ingrained, laid back, loose, slightly long haired gentle soul and a doctor.  Who would have thought . . .

 In his matter of fact tone he pointed to the grayer mass on the grayish x-ray tucked into the gleaming metal frame that hung on the wall. This meant nothing to me, but the MRI image next to the regular familiar image highlighted in living color the distinctly different spot of malfunction hidden in the gray matter.

“You need to see a neurologist. Soon.  These types of things are usually not malignant; however there is no way of knowing what this is other than how it appears based on the symptoms it is presenting.  The surgery for this is not that big of a deal.  They go in and remove things like this all of the time.  Up through the nose, into the brain.” 

He pantomimed some kind of insertion of an instrument into the nasal cavity like picking his nose with the nostrils pulled back and open like some weird clown hippy wearing a stethoscope. 

“Thanks for the extra explanation Ken.”

You are talking about my brain like you can remove a piece of ham from a sandwich!  My hippy doctor friend turned and pulled the x-ray film off of the monitor with a snap.  He smiled at me and with a nod of his head, left the room.  My brightly dressed nurse whisked into the room, pulled purple sterile gloves out on the wall. Is that Scooby-Doo slinking around her smock with Shaggy, Fred, Daphne, and Velma? Where is the Mystery Mobile to solve this mystery? What the hell!   Not-Daphne checked my vital signs and IV site. There was something in Ken’s smile as he walked out of the room.  It could be fear, but I have not seen that expression from him either so how the hell would I know?  Stunned and stranded with my friend the IV pole and monitor; it ticked and tocked my life to a mechanized beat.  I contemplated the concept of now.  Now I am told I am possibly dying but who isn’t?  Am I dying any more now than I was two weeks ago?  The day something is born it begins to die, and only in that certainty does someone truly begin to live. No matter what “they” say and in spite of all the medical evidence, experts, or pamphlets introducing me to my new nemesis that suggested I should be otherwise I am alive.

The Beginning

This blog is dedicated to my life living with 

Systemic lupus erythematosus. If you don't know what it is I suggest you take a look on the website for the  Lupus Foundation of America  in order to familiarize yourself with the disease.  Please do not give it to yourself after reading more about what Lupus does to those afflicted.

You may learn about what has happened to me, and in doing so learn about what has this disease has done to people that you know.  There will be excerpts from my book, in progress.  I am pretty sure it will end with my death so now that you know the ending I am pretty sure you get why this blog is named as it is.  

Join me for the laughs and tears living a life with Lupus.