Lupus Fatigue and Finding a Fighting Spirit

A tidal wave of lupus fatigue.

As I stand barefoot on my cold, wet beach and watch the receding tidal wave of lupus fatigue ebb away from my shore, I see surrounding me the vast lifestyle devastation the overwhelming flood of tiredness left in its wake.  Mayhem is everywhere.  Laundry sits unfolded, dust accumulated, real and junk mail sit in an unsorted stack overflowing my desk, and my rugs and floors are looking pretty sorry indeed! All around is a general sense of disordered clutter and mishap.

While seeking a means to withstand the exhaustion and bone-tired feelings, all my work seemed half-abandoned at home and at the office.  I spent many days sleeping until noon, some days telecommuting, some days lounging in pajamas all day, a few days going in for half-days, but braved only a couple of full in-the-office work days.  The siege of fatigue waters have left an unkempt landscape about me as my physical weariness finally begins to recede.

Domestic and professional
disorder after a flare

Once again, I begin to pick up the scattered domestic and professional pieces of my normal life following a lupus flare.

Although this flare has been quite disabling and my lupus arthritis was very aggravated, I am thankful that neither my central nervous system lupus nor neuropathy flared.  Through the last couple of weeks, these often clear manifestations of my lupus have remained unusually quiet, and for this I am grateful.  At least, this was not an all out every system lupus attack, it was merely physical and not mental.  The only predictable thing about lupus is its unpredictability.

Hope and snow yesterday!

I had hope yesterday and even more this morning that my two-week flare of lupus fatigue is finally ending.

Yesterday brought a massive real weather storm to Arizona, and parts of the Phoenix valley saw snow, sleet and hail – a rare phenomenon in our desert city!  I stood on the second floor balcony at work with co-workers, as we held our hands out to catch and look at the soft white substance that melted on our hands and accumulated on ground below.  My son-in-law, a native Phoenician, regaled us last night with a report of his first experience driving in snow.

Although we had heavy rain and icy forms of precipitation all day long, I was feeling measurably better and was able to work a full day at the office.  My joints were still very sore, but my spirits and energy were on the rise.

Birds, singing in the rain!

This morning, as I hear the birds singing outside my window, I feel a little like joining them.  Perhaps a couple of the areas of disorder that are now beginning to bother me will get tackled this morning. Earlier this morning, I stood outside in the 48 degree morning chatting with husband while his rain-soaked car warmed its engine and dripped into the puddles on our driveway. The cool, moist morning air felt refreshing today instead of wearying.

With near exuberance I heard myself proclaim, “I feel almost like myself again.”

We will rejoice and be glad

Indeed, every storm has an ending, and today, I have once again found my fighting spirit!

I am just now reminded of the scriptural words I sang to a simple hymn I played yesterday morning at the piano.  “This is the day that the Lord has made, we will rejoice and be glad in it,” Psalm 118:24.

Lupus and the Name Inside the Book

The name inside the music book

I opened my choir book to look inside the front cover of the Christmas music the choir director had just passed out.  This year, my church choir will be re-performing a cantata we last sang several years ago.  This year, the music was not reassigned to the same musicians and was given to different singers.  Peeking inside the front cover of mine brought a wistful tear to my eye, and a flood of memories about the last person who used it.

The book had the name “Gaynel” written in pencil in the upper right hand corner of the title page of the music.  Gaynel had lupus, too, and I have mentioned her here once before.  She was almost old enough to be my mom, or at least my aunt.  Gaynel was a charter member of our church, and was loved fondly by everyone who knew her.  She and her late husband were very close friends with my in-laws who all originally came from New York.  My husband and I have known and loved her and her extended family for over 25 years.

Gaynel’s story is unfortunate while also one of faith, hope and courage.

Lupus Nephritis

In the last years of her life, Gaynel was a widow and battling kidney failure due to lupus nephritis, while undergoing home peritoneal dialysis.  Everywhere she went, she carried a rolling oxygen tank with her.  When she finally became so ill that she left the transplant list, we all sorrowed with her.  It became clear to her doctors that she was too weak to make it through a second transplant surgery, after her lupus nephritis destroyed the transplanted kidney she had received several years earlier.

I remember Gaynel before she had kidney failure.  She was a dynamic, cheerful spiritual leader in our church.  She and her late husband directed a large children’s bible club ministry in our church that involved countless children over more than twenty years, including my son and daughter.  She was also the church treasurer, a role she continued until right before her death two years ago.  The one other ministry that she was extremely determined to continue until the end, was her love of singing in the church choir.  For several of her last few years, one of the choir members helped her to her seat at the end of the alto section of the choir, with oxygen tank in tow.

Preparing for Christmas music

So, this season as we prepare our Christmas Cantata, I have the bittersweet memory-invoking honor of holding the choir book that was last used by Gaynel.  She was a hero to me, and an inspiration to everyone who watched her last years of suffering.  She faced them with cheerfulness and unwavering joy of faith.  Although she was the victim of lupus, she was neither bitter nor blaming, and accepted her fatal situation with poise and grace.

She often acted as if her lupus didn’t even exist, and never was the one to bring it up in conversation.

Her life touched so many, including mine

Two years have now gone by since her passing, and she is still mentioned from the pulpit and on the lips of all who knew her as a stalwart example of faith through trial.  She set a benchmark and example that I fear I cannot begin to meet, except as the grace of God might help me become a little more like Him.

Gaynel was a Christian, both in faith and in practice – facing her lupus and death, she had unwavering faith and strength of heart.  She was very much “Christlike,” the real meaning of the word “Christian.”

Gaynel’s life touched so many, and now, in the quiet small way her book now is held in my hands, she is still touching mine.  May I sing to God’s glory with a heart of faith as she did.

______________________

To learn more about lupus nephritis, read “Kidney Disease,” an article on the Lupus Foundation of America‘s web site.

Lupus and remembering a few of my favorite things

Raindrops on roses

What are my favorite things that somehow connect with my lupus?  How can my favorite things make a difference? There are so many good things in life to cherish and celebrate, no matter how difficult our limitations and challenges may be.  I am very thankful for a few new favorite things that are part of my life with lupus.  Some of these new favorite things have filled the void created by the things are no longer part of my life, because of lupus.

I am reminded of the Rogers & Hammerstein musical, The Sound of Music, when Maria and the Von Trapp children burst into one of the all-time favorite songs of my childhood:

Whiskers on kittens

Raindrops on roses and whiskers on kittens
Bright copper kettles and warm woolen mittens
Brown paper packages tied up with strings
These are a few of my favorite things

Girls in white dresses with blue satin sashes
Snowflakes that stay on my nose and eyelashes
Silver white winters that melt into springs
These are a few of my favorite things

Warm woolen mittens

When the dog bites
When the bee stings
When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad

Here are a few of my own favorite things, sans the singing:

Cycling and swimming and gardens with butterflies,
Cooking in the kitchen, and crows feet with kind eyes,
Freshly mown grass and my favorite porch swing,
Wind in the branches and birds as they sing.

A husband who loves me!

Friends who listen and people that care,
Playing the piano, with a hymn in the air,
A husband who loves me, and being his wife,
Together, we can weather most any tough strife.

When the pain strikes, and neuropathy stings
And my lupus gets bad,
I try to remember life’s many blessings,
And think on the joys I’ve had.

Think on the joys!

Lupus and the top ten essentials of life

Top ten essentials

There are many essential things every person and lupus patient needs for health and a balanced life. These critical things fall into two major categories: the things that cost money to get, and the most essential things that are priceless that cannot be bought.  For a healthy person not facing the challenges of lupus or any other chronic illness, their list might be a slightly different, but my hunch is that many people would have a list very similar to mine.

My list is simple, divided into the two categories and listed in descending order of their overall value, importance and necessity:

Priceless

THINGS THAT DEFINE ME AND MY LIFE… PRICELESS!

• My husband: love of my life, companion and best friend
• Spiritual life: God, the Bible, my church and fellowship with other christian friends
• Family: children, children-in-law, grandchildren, in-laws, siblings, father
• Music: Our piano, singing, at least one hymnal and other music books

Paycheck

THINGS THAT MAKE ME GO TO WORK

• Nutrition: water and healthy food
• Comfortable secure home: yard, garden and large patio with lots of shade, basic plumbing
• Comfortable wardrobe: clothes, shoes, and a good sun hat
• Physical needs: sleep, hygiene, dental care, medical care, medications
• Transportation: car, gas, maintenance, insurance, tires or public transportation
• Communication/Education: cell phone, Internet access, texting ability, radio, books

What is on your list?

Coming up with a list of top ten essentials is a challenging exercise that is part of the 30-day health writer’s challenge.  This made me ponder a little more than normal what really matters the most in my life.  I found it very interesting that I didn’t even include my legal career or job in the top ten list anywhere, unless you infer the need to make money to get the things in life that are not “priceless.”

What is number one on your list?

Lupus and my theme song – singing in the rain!

Singing in the rain

If there were one well-known song that would best be the theme song for this blog, it might well be “Singing in the Rain.”  Click above to watch the You-Tube video of the original Gene Kelly rendition of this fun-filled ditty.  This was a favorite of my mother and I as we would walk arm in arm in the afternoon San Francisco rain.  I miss her, and the California rain.  For the rest of the story, see the About the Adventure page of this blog.

Butterfly in the rain...

Whether sunshine or rain, the goal of this blog is to present the positive, but realistic side of the lupus adventure.  That means that there are times when we can choose to walk along, singing in the rain, rather than moping over the inclement weather.  We can’t really control the weather or our lupus.  Whether life gives us lemons, like the ones that grow on the tree in my Arizona back yard, and then we choose to make the proverbial lemonade, or whether we chose to smile and sing during the storms of life, we can to choose to look at our lupus experience from the positive angle.  From this vantage point, we can count the blessings and find the good things lupus does not have the power to take away.  We keep lupus in its place, and sing and dance a little, sometimes, even when we don’t feel like singing at first.

Music has great power to lift the spirit

Singing has a subtle emotional and spiritual impact, and it raises our endorphins, elevates our mood, and even has a place in lowering the perception of pain.  Music is one of the most powerful art forms for its dynamic effect on the human mind, body and spirit.  Music can motivate and captivate, and its potency to influence is woefully under esteemed.  Martin Luther called music “the universal language.”

The next time our Arizona weather turns to summer monsoon rains, if you pass by my house, you might just catch a glimpse of me stepping outside to while I am singing, dancing and puddle jumping in the rain showers.  There is something very, very therapeutic about the exercise of puddle splashing with song and dance.

You will never know until you give it a try!

Lupus and a letter to my younger self

Lupus at sweet 16, but not diagnosed

Lupus at sweet sixteen, but not yet diagnosed.  You don’t know this yet, but in a few years you will be a young wife and mother, and will finally be diagnosed with lupus.  However, you will continue to have mysterious symptoms for another ten years before a doctor finally asks the right questions, and runs the correct blood tests to find the answer to why you are so sick.

In the meantime, please just keep trusting God on the days you feel bad. It is not in your head, you are not a hypochondriac, and some day you will have an answer and proper treatment. Until then, keep focusing on your blessings and hold onto the joy of the Lord in the midst of your rough times. The signs of lupus have already been present for most of your life, but the family doctor you have seen since you were five doesn’t know what to look for.  He has repeatedly tested you for rheumatoid arthritis and diabetes, knowing that your mom’s mother had both, in his attempts to try to find an answer to explain why you have had so many health problems.

Even when you had kidney problems and protein in your urine, he never figured out your recurring childhood “kidney infections” were really lupus. Someday you will understand and need to forgive him for what he doesn’t know.

5 year old feet

Remember when you were five, and your knees and joints became swollen and stiff for weeks, and they tested you over and over for rheumatoid arthritis?  It hurt so much to get up and down out of a chair that you cried, and cried?  They were trying to find lupus, but didn’t know what to do to find it. Not very long after that, you went through months of falling asleep in exhaustion in the middle of the afternoon, and the doctor put you on the diabetes diet, thinking it was blood sugar problems, even though you tested negative for diabetes.  They just didn’t yet suspect lupus!

Then, there was that summer when you were a couple of years older, you started getting round puffy red rashes the size of pennies on your face, arms and neck.  This was a sign of your lupus, too,  but the doctor only could describe it as a sun allergy.  He didn’t know to look for lupus.  Later on, you got more round red rashes on your forearms, and your mother thought they were ringworm.  Then you had deep red swollen patches of rash a couple of years after that all over your neck.  Still, probably more cutaneous lupus discoid rashes.

Later, remember another time when you were unusually exhausted for months, and your mom explained to you that the doctor had done blood tests that revealed you were extremely anemic?  Then, you took sustained release iron tablets for several years before your hemoglobin levels stabilized.  This might have been caused by lupus attacking your blood cells, but we will never know, because they didn’t test for lupus.

Summer after grade school

Later, in the summer after grade school, there were high fevers that made you hallucinate.  The doctors at the hospital never suspected lupus, even after searching in vain for a virus or bacteria they thought was causing the fevers.  Still, no lupus diagnosis.  Afterward, you felt bone-tired fatigue for weeks, and in your school pictures from 7th grade you had deep dark circles under your normally sparkling eyes.  Remember how you hid those awful pictures, because they made you feel like you looked like an old sick woman?

Then, a couple of years ago in middle school, they had another opportunity to find your lupus, but missed that, too.  Your sudden severe case of painful pleurisy in your lungs in the eighth grade should have been a clue for your doctor to suspect lupus.

All the migraines you have had since you were a little girl, and the painful mouth and nose ulcers you have had every few weeks from the time you were five or younger were signs and symptoms of lupus. I hate to tell you that you will have to continue having those oral and nasal ulcers for the rest of your life, every time your lupus gets ready to flare. They will become your early warning sign of another major flare ahead.

In a few years, a doctor will even try testing your recurring nose ulcers for cancer, but will again overlook having the biopsy tested for lupus.  I am so sorry to tell you that it will take a few more years and a couple more doctors before one finally figures out that the ulcers are a sign and symptom of your lupus that will eventually be diagnosed correctly.  It is going to take about ten more years.

Senior year of high school

In a couple of years, during your senior year of high school, you will be very sick from October until March. Your legs will ache, your vocal chords will tighten up and you will have fevers and lung infections. You will miss most of your school classes that fall and winter, and have a six-month long bout with what you doctor will dub a “pneumonic viral syndrome.”  During those months you take scores of antibiotics and other drugs, but continue to get sicker and sicker.  You will have no memory of Thanksgiving or Christmas from that year, and the rest of the time will be a foggy blur in your memory.  During those months you will first experience symptoms of peripheral neuropathy pain and nerve irritation in your legs, and you will lose your voice to laryngitis for several months.  The inability to sing will sadden your young heart and be one of your few lingering memories from that long season of illness.

During your second year of college you will experience a long lupus flare that attacks your central nervous system, and have difficulty for the first time remembering what you study. Midway through the school year, you will experience days of intense confusion and sometimes get lost on campus looking for your classes, and even forget your best friends’ names.  Your forgetfulness will have some rough impacts on several friendships, and neither you nor your friends or family will understand why. This will be a lonely scary time, but when you call out to God to be your anchor, He will remain faithful and give you courage and strength to tough it out.

Don’t be afraid of the uncertain years ahead, for in due time you will be one of the lucky ones.  In your fourth year of college you will meet and marry a wonderful man who suffers from asthma and epilepsy, and because he faces his own health challenges, compassionately understands you are facing an as yet unidentified health foe.  You will both share a deep love of God and music, and two solo singers will blend their lives into an amazing duet.  Before you marry, you talk about understanding when each other have the “gray days” when you feel off par, and know you will be able to encourage each other through them.

Young mother in car accident

Shortly after your two children are born, an answer will soon be in sight.  You will have some spinal injuries in a major car accident when you fly into the windshield, head first, and then go through three years of physical therapy.  In the aftermath of that injury, you body will have a hard time recovering.  Arthritis, tendon and muscle inflammation will become out of control, and eventually, you will have intense pain and immobility.  Some days, your knees will be too painful and weak to climb the stairs to your apartment, and your husband will carry you up the stairs.

Difficult to shop

Then, for days at a time, your hands, legs and feet will have so much swelling and intense pain that you end up sobbing by the end of shopping for groceries.  As the pain gets worse, you are eventually walking like an old woman, hobbling in stiffness and pain with every step.  You and your doctor will not at first understand why all this is happening, along with recurring bouts of round skin rashes, more pleurisy, sinus infections and other cycling issues that will come along the way.  Finally, your doctor will look at you one day and say, “you are too young for this,” and you will in wholehearted agreement exclaim, “I AM too young for this!”  In a moment of insight and inspiration, your doctor orders some blood tests that you have never had done before.

A doctor will finally understand it is lupus

A few days later, in excitement and near glee he will call you in to his office to talk!  You will hear the words, “if I am right, you will be doing hand springs in a few months.”  He won’t tell you what he found, but will send you to a rheumatologist he highly respects.  There will be many, many more tests and eventually you will begin receiving medications to treat you for lupus.

From that point on, your life will not be all smooth sailing, but you will always after that know that you are battling lupus.  Your doctors will make many choices along the way that maximize your health and keep you functioning.  You will be able to avoid disability and work a long successful career in law and government, and have a wonderful and fulfilling life.  You will live to see many decades of marriage, grandchildren and much more beyond.

A part of your journey but not in control!

Lupus will cause you many challenges in the years ahead of you, but it will not defeat you.  Your life will be at times a lupus adventure.  You will become strong and will be a victor, and lupus will just be a part of your life’s journey, unwelcome, but not in control.  Your faith and joy will not fail, you will rejoice in the blessings of life.

A heart-felt conversation, but not about Lupus today!

Easter conversation in my heart

Today is Easter Sunday!  My thoughts are focused completely away from my Lupus, and onto the silent conversation going on today in my heart.  Easter is not originally about bunny rabbits and Easter eggs, although they are certainly a colorful and fun part of many modern-day Easter observances.  Today, I am looking forward to an Easter that is all about Jesus Christ, and the amazing thing that happened early on a Sunday morning 2,000 years ago.  My internal conversation dwells on my gratitude for the One whose focal birth divides the Gregorian calendar into two halves, B.C. and A.D. ["Before Christ" and Latin "Anno Domini," or "year of our Lord."]

The Bible tells the Easter story

The Bible teaches clearly and simply that God Himself loved man so much that He Himself condescended to enter into His own creation, and came to earth, born miraculously as an infant in the person of Jesus Christ.  It reports that he He lived a sinless life, and then for three years had a ministry preaching and performing many miraculous acts in front of thousands of people all over the land of Israel.  He then died in undeserved punishment on a Roman cross outside the city of Jerusalem in Israel.

After His death, Jesus’ body was wrapped in ointments, herbs and fine linen and placed into a new tomb owned by a man named Joseph.  A boulder was rolled over the opening in the rock, and Roman soldiers sealed it.  The Roman’s remembered that Jesus had predicted in his preaching that he would return to life from death after spending three days in a grave, so soldiers were posted outside the tomb to keep watch for three days, guarding it against tampering, fearing the theft of His body by Jesus’ followers.

Empty tomb

Early in the dawn of the first Easter morning, Jesus arose from death miraculously, as He predicted.  The soldiers guarding his tomb were astonished, overwhelmed and stunned by His resurrection and the opening of His tomb.  Historical passages in the Bible report that after Jesus died and was buried, He arose from death after three days.  He then appeared after his resurrection to his disciple Peter, then to the other disciples, and after that to over 500 people at one time.

My heart today ponders and marvels at the love of a Creator that would motivate such selfless, merciful, forgiving behavior, and the importance of that event in connection with my life today.

The term “gospel” or “good news” comes from the Christian belief that Jesus’ death is offered as a substitute punishment for each man’s sin, available to any man who would believe in Him as their own Savior.  The “rest of the story” of the “gospel” includes the report of Christ returning to life after three days, and as a result conquering both sin and death.  This has the effect of forging a way for man to follow Christ’s experience of resurrection after their own death.  As a Christian, I believe that He gave his life in place of mine, and took the punishment I deserved for my own sins upon himself, and then arose from death. This sets me free by faith in Him from the punishment for sin, makes me eternally grateful, and opens a miraculous door for me to have a restored personal relationship with God himself.

Easter celebration!

Easter for a Christian is the annual celebration of the powerful victory of Christ over death and sin that reaches down through the ages to us, to me, to you, to any person who will believe in Him and trust Him to forgive their own sin and save their soul.

Later this morning there will be some beautiful, glorious music at church, where the worship service will focus on the Bible’s message of the gospel of Christ, the “good news” of Easter.  It will be a privilege to sing with the church choir some amazing songs of celebration and gratitude.  It will be a blessing to listen to my husband’s magnificent tenor voice as he shares a special solo about Christ’s resurrection with the congregation.  Finally, our family and friends will gather at my in-law’s home for a special afternoon Easter dinner, together recognizing and remembering the single historical event most pinnacle to our Christian faith.

Today, my conversation is all about celebrating new life, and faith in the One who makes life possible.  I can live, because He lives!  Happy Easter!

Lupus, singing and a visiting hummingbird

Back to singing and the swing of things

After any illness, it is hard to get back into the swing of things and resume a normal schedule. Sometimes this is due to lingering symptoms and post illness exhaustion, as well as adjusting to the shift back into active mode. With lupus, the challenge for me is knowing how to find the right speed to resume my normal activities.

Today, was my first Sunday back attending my normal schedule of church activities, singing at a morning choir practice, along with the congregation during the service, with the choir, and even in a duet with my husband (all without choking or exhibiting other socially unacceptable post-bronchitis behaviors.)  He sang the lead, and I did a softer not-too-demanding harmony part.  I love singing with him, it is one of our life’s special joys.

After church we headed home to cook a nice Sunday dinner for my family, and to enjoy a much-needed relaxing afternoon.  Kicking up my feet for a while sounded like a perfect plan, especially since my hand joints were swollen and red this morning from mildly flaring lupus arthritis.  Hopefully, this week my family doctor and rheumatologist will allow resuming my monthly Benlysta infusions that were delayed two weeks due to bronchitis.

Surprise dinner guest

Then, during dinner, we had a delightful surprise visitor!  A little backtracking will fill in some missing information:

About a week ago, my husband and I were sitting in the kitchen and noticed that a hummingbird had begun building her nest outside our dining room window, anchored to a small branch in our lemon tree.  We enjoyed watching her as she industriously came and went, poking dry leaves and other building materials from our yard into her nest construction project.   After last week’s late winter storm, we hadn’t seen her since.

During today’s Sunday afternoon dinner, we noticed the tiny mother bird had returned and was settled in, sitting atop her newly built nest.  I grabbed my digital camera, and walked around the house, sneaking quietly into a good vantage point near her nest and waited.  I enjoyed a quiet restful moment drinking in the smell of the ripe lemons hanging above me, and tried to blend unnoticed into the dappled afternoon shade of the tree.

Another bird's tiny hummingbird eggs

Soon, I was rewarded when she returned to tend her nest.  She momentarily fanned her whirring wings over the nest, held them still for a split second, and then tucked them to her sides.  It was exciting be close enough to zoom in and catch the tiny mommy bird nestled on her perch.  It seems to me she posed very nicely for my snap shots of her motherly waiting game, and amazed me with the small walnut size of her nest.  If I didn’t think getting too close would scare her off, I would peer over the edge of her nest to catch a picture of her tiny eggs.

However, my respect for the tiny bird mommy-in-waiting will probably keep me from intruding that closely. I will borrow my picture of the eggs for the time-being.

Lupus work-life balance in special life events and celebrations

Life's special events and celebrations

Life’s special events and celebrations present special challenges to lupus patients.  These special family times and events, such as weddings, birthdays, anniversaries and holidays can tax the limited resources of the most balanced person, let alone a person facing extra challenges from a chronic auto-immune disease, like lupus.  Intentionally acknowledging physical and emotional limits, and planning effectively to deal with limits, can help minimize the exhaustion and possible flares after special or  extraordinary life events.

Planning time to rest, lighten work schedules before trips and events, and allowing recovery time afterward can greatly improve the health outcome for lupus patients.  Before and after non-routine events, I intentionally schedule a partial work day to allow for preparation.

This week, we celebrated our 31st wedding anniversary.  My planning for date night out with my husband included taking some time off from work to permit extra special primping and beautifying for the fun dinner out.  So, I communicated with my boss and scheduled my Friday telecommute for a shorter 4-hour half-day.

Much-needed manicure and pedicure

This allowed me time to go out in the early afternoon and get a much-needed manicure and pedicure, which was a pleasant gift from my husband to help make the whole day more special.  I actually had time left to coordinate my outfit and special makeup and hair touches without feeling rushed.

In this way, my preparation activities became and important part of our whole day’s celebration, and proved to be quite rejuvenating and enjoyable.  Amazing foot and hand massages were enjoyed during my manicure and pedicure, and helped me feel very refreshed and relaxed.  There was plenty of time in the afternoon left for leisurely special hair fixing and makeup touches.  By evening, early day lupus physical and mental challenges had melted away over the hours, and our fun date night began filled with energy and my best physical and mental well-being.

We had such a wonderful evening together.  Our before dinner stroll through a nearby plaza included stepping into the jeweler’s shop for a (lovely) bracelet purchase.  We sauntered on, momentarily slowing our steps to drink in the balmy night air, the smell of roasting popcorn, and the scene of relaxed folks gathered on the park lawn enjoying an old movie musical under the stars.

Unhurried candlelight dinner together

We enjoyed an unhurried dinner at Seasons 52, positioned just within ear shot of a nearby skillful jazz musician at the piano bar, and her occasional quiet serenades.  A fitting backdrop for a pair of musicians to share a romantic anniversary meal.

In our dinner chatter, we contemplated 31 years of God’s blessings, thankful for beautiful fruit of joy and love maturing throughout our shared lives.

CNS lupus, butterflies and a minor milestone piano performance

At the piano every morning

Music and lupus goals

Over the past couple of years, learning to play the piano has been a personal, musical and spiritual goal woven throughout the activities of each day, with a purpose.  My husband is an accomplished church pianist, and music performance is focal point of both of our lives.   We sing solos and duets together, and he is the church choir pianist, and one of several pianists that play for church services along with congregational hymn singing, and solo piano pieces played as offertories.

For most of my life I have studied and performed vocal music, and studied conducting and music theory during four years of college in San Francisco and Phoenix.  I also played the violin for years, although lupus arthritis has challenged my joints and caused me to set my favorite instrument down, because vibrato motion causes my left hand finger joints to balloon excessively.

When I realized that playing the piano did not aggravate my arthritis, and that playing was an excellent morning measure of my neurological abilities, I began sitting down at the piano every morning to sight-read through hymns.   This excellently measures activity of my CNS lupus symptoms, and gauges the fitness of my reflexes and eye-hand coordination necessary to safely drive to work.

Musical stepping stones

Musical stepping stones

Playing piano soon became a regular part of my morning routine, and before very long my piano reading and playing skills started improving.  My long-term desire has been to gain piano proficiency.  I was delighted to learn that my active CNS lupus symptoms would not prevent it, and that the very diagnostic tool I had used to test my mental fitness each morning was actually improving it!  I realized along the way how much I simply enjoy playing and making music at the piano.  I am no virtuoso, but the experience is extremely musically  satisfying.

Recently, I started taking piano lessons from one of the other church pianists.  My husband is a great coach and encourager, but it didn’t seem like such a great idea to have him as my piano teacher.  He heartily agreed, and supported me in this important step toward reaching my personal musical goals.  The added structure, coaching and accountability of formal piano lessons helps my confidence, and helps me find and improve some of my specific musical weaknesses.

For some time now, I have played piano for services at a weekly nursing home church service conducted by our church.  This helps exercise my developing musical skills and allows me to deal with the butterflies and nerves associated with playing a new instrument in public.  A few times recently,  I have also played piano during hymn singing for our adult Sunday school class when my husband was ill at home.  Each new performance setting has strengthened me.

Musical milestone

Butterflies surrounding a musical milestone

Each time the use of my newest musical skills are stretched, my prayers for focus and victory over “the butterflies” have been graciously answered.  This past Sunday evening was a major musical milestone in my piano adventures.  I was asked to play the offertory for the evening service, and for most of the congregation, this was the first time that they have heard me play the piano.

Many of my closest family and friends were kind enough to support me in personal prayer.  They understand my desire for the music to bring attention and glory to God, and not undue attention to me.  Those closest to me, who understand my battles with CNS lupus, were also interceding on my behalf for God’s help with my mental focus and memory.  These personal “prayer warriors” were asking for God’s gracious help to keep my lupus from interfering with my mental processes during my performance.

The result was both encouraging and humbling.  It was clear to me that I must be humble enough to risk making mistakes, in order to cross over to the next threshold of usefulness as a pianist.

Performing butterflies

Finding “the zone”

That afternoon, I was as well-prepared as possible, well-rested and “prayed up.”   A couple of hours before the service began, I slipped onto the platform and sat down at the grand piano to familiarize myself with the feel of the piano.  It was very different from ours at home.  The keyboard was lower, the touch of the keys was softer, the bench was  slightly different height, and the sound and resonance of the notes I was playing were crisp and clean, slightly different than my piano at home.  There were enough different sensations around me to easily distract my focus from the music, but it seemed like my CNS lupus was being quiet.   The piano seemed pleasant and enough different from home to give me a sense of heightened awareness.  I had a “green light” to go ahead.

I realized during this run-through that a great deal of mental discipline would be required during my performance.  I played through the solo I had prepared several times, as well as another short piece that I have worked on for mental contrast.  This short rehearsal helped me minimize and prepare for the distractions and disorientation that might have overwhelmed me if I had encountered them for the first time during the performance.  This dry run also helped me find the mental “place” that I would need to return to during my performance.

There were many members of the church mingling in the sanctuary as they assembled for the afternoon choir practice.  This helped me practice “zoning” them out, and I was pleasantly surprised (and encouraged) that I was able to concentrate on playing the piano without making a mistake when the song leader, and a couple of other people came up to me at the piano and spoke with me briefly while I practiced.

Focus on music, purpose and message

Spiritual preparation and intercession

Although I must admit I was slightly tempted to “chicken out,” it was clearly the time for me to put my apprehension aside, and take the next important musical step.  I mentally rehearsed the pleasantness of my encounter with the sanctuary piano during my quick rehearsal.  I intentionally repeated the idea that I was looking forward the opportunity to play such a lovely instrument (instead of rehearsing  apprehensive thoughts.)

One of the other pianists encouraged me greatly when she enthusiastically expressed how much she was looking forward to hearing me play.

I knew success would require tuning out all other thoughts except the keyboard and the music.   To meet the spiritual and musical goals associated with playing a solo for a church service, I would need to have my mind completely off of myself, not thinking about what others might think of me or my musical skills, risks to my self-esteem or any other self-preserving concerns.  Focus belongs solely on the music, its purpose and its message.  I would need all of my lupus-impaired mental abilities 100% focused on the music.

It is my philosophy that performing music for a worship service is not about the performer, it is about the message of the music and the One being worshiped!  I replayed the mental mantra that playing this piano solo, “Rejoice, Ye Pure In Heart,” was not about me.

This mental and spiritual approach, and the prayers of others who supported me,  helped me keep my focus where it was needed.  My offertory went well, and although I made a couple of “mistakes,”  these were unnoticed by the listeners.   I had a couple of transient moments when my ability to mentally multitask was at its absolute threshold, and I could not quite mentally embrace all the notes on the page in front of me.  I was able to compensate by simplifying notes for a couple of beats, and leaving out a couple of chords in the mental “overload” zone.

More musical adventures ahead

 

The next adventure is ahead

Feedback I received after the evening church service was very encouraging and supportive, and very honest.  One of our close friends commented about how “focused” I was, and how they are looking forward to the time when I will be able smile while playing the piano, as is my custom when singing solos.  It was easy to admit that  smiling was just one too many things for me to think about during this first public performance.  This important refinement will have to come later, when my skills and ability to split mental focus while playing are stronger.  I was happy to have been musically successful.  Unfortunately, the aesthetics will have to wait a little.

Another pianist complimented me, explaining that she enjoyed my “absolutely perfect” rhythm.   Her unsolicited comment meant a great deal to me.  Other friends expressed their kind compliments and encouragement, many also expressing their surprise to learn that I could play the piano.

I was very grateful to have successfully crossed through this important milestone in my musical piano development.  Getting through these experiences of first public performances, dealing with the nerves, “butterflies” and distractions and learning to keep focus is essential.  In order to cross over to a place of piano competency and usefulness in music ministry, this process cannot be side-stepped.  Every new instrument a musician learns, allows re-experiencing beginner’s humility, and learning these important truths all over again.

This week, I passed through a major musical transition successfully.  Whew!

I am grateful those whose supported my musical adventure emotionally, spiritually and medically.  All three are necessary in my lupus and life support network.  My life goals of piano proficiency, and my specific desire to acquire skill necessary to accompany my husband for his vocal solos, and to teach private music after I retire from my “real” job in a government law office, are now a bit closer.

I am careful to praise the Lord for his goodness and help!  After all, my music is for Him.

The latest “score” in my piano proficiency v. lupus adventure:  Pianist 1, Lupus 0!