One Patient's Positive Perspectives

Posts tagged ‘God’

Lupus in the light of a rainbow’s promise

wp_20170123_16_24_13_proOften, many days go by when looking outside at the nearby trees is overlooked.  The cold rainy day had soaked everyone as they made their way to the office.  Lupus grumbled loudly as aching joints and stiffness responded to the damp chill penetrating the office.

The thermal glass was much too thin to block the deep chill penetrating the wall.  The storm blanketing the mountains to the north with deep layers of winter snow brought a biting chill to our arid desert valley below.  Pelting rain struck the office balcony and trees below, as the sky gave a message of promise read by everyone standing there in awe.

320px-Butterfly_sikkimDark gray clouds hung heavy in the eastern Arizona sky as a billowing contrast to the brilliant brush stroke arc of colors swept across the sky.  The southern clouds even carried a faint echoing hint of a barely perceptible second bow.  Standing where an outstretched hand could touch the drenching rain, the combination of invigorating chill and the intensely beautiful sky snapped away the lethargy of the  aching rainy day.

wp_20170123_16_23_49_proRemembering the story of the first such rainbow adorning Noah’s sky refreshed a keen awareness of God’s many promises spanning the ages: never to flood the whole earth again, His Word delivered through holy men of old, the birth of a Savior, and the cross and resurrection that promise new life to those who believe and receive Him, and even now the promise of forgiveness and mercy while adventuring toward a heavenly future home.

With a heart full of these thoughts, today’s rainy day aches of Lupus were somehow dwarfed under the shadow of grand colors of promise hung over skies of history.  A deep cleansing breath and lingering sigh were the only utterance that really described the sight.

The duties of the day soon called out the time to go back inside and into the office kitchen, where a fresh cup of hot coffee waited to warm and nudge persistently back toward the reality of waiting duties on a desk inside. The image of that gorgeous sky evoked thoughtful quietness as I sat down again to view the distractingly beautiful scene outside my office window.

Lupus and 200 hours with Benlysta

th (4)

Benlysta Infusions Started August 2011

Every four weeks, month after month for almost four years now, three to four hours of each month has been devoted to an infusion chair.  Doing a little mathematics reveals that a little shy of 200 hours have been invested in Benlysta (belimumab) infusions for lupus.  As medical milestones of each month, they are helping subdue and manage the impacts of lupus.  Before lupus, the threat of quitting work due to early disability retirement loomed ahead, but the powerful work of this relatively new biologic drug reversed that.

With the return of greater ability to enjoy challenging adventures, quality of life is improved.  Intensity of lupus signs and symptoms have dramatically decreased over time, although the benefits were slow to show up in the first few months.  The first few months showed little change in lupus severity, but during the next few months that followed, symptoms decreased, pain lessened, and flares began to be shorter and less frequent.  During the second year of taking Benlysta, overall health and strength gradually improved.  Now, after almost four years, the infusions continue and keep lupus in manageable check.

imagesOVOE762VTwo noteworthy observations about effects of a Benlysta monthly treatment cycle:

  • Signs and symptoms of lupus seem to increase during the week before my infusion.
  • After Friday infusions, extreme, bone-tired fatigue lasts through each weekend.
  • Immune system remained strong, if not better

Benlysta may be a great option for many lupus patients, may be just what their doctor ordered!  As for me, I thank God daily for the help and control of my lupus it continues to give.

Lupus adventures in accidental forgiveness at the side of the road

6fa91cc3b80f7a86a82d5eb745d50704

Softening that first impulse… Stop, breathe, think and pray!

Accidents happen!  For emotional and spiritual health, it is important after a traumatic injury to start by sorting out emotions and clarify the difference between fault and malice.  If someone was at fault due to negligent, careless, or otherwise the unintentional actions causing an injury, for our own health and peace of mind we should try to forgive them. They did not mean to cause hurt, as there was no malice in their actions.

thEHW97T5I

Admitting responsibility

We should not confuse forgiveness with the need to hold others responsible for the results of their actions, but we should understand we will only hurt our own heart and spirit by rehearsing and feeding anger and resentment toward someone who caused our injury.  Imperfect humans cause accidents, and we should see them as simply that.  Imperfect.  Human.

Amazingly and unexpectedly, healing began right at the scene of a recent accident, when the man who caused it stood there by the side of the road, holding out his hand with regret on his face.  Hands were shaken and the lament in his eyes was clearly genuine, his words of apology were real, and his full acceptance of fault meant only one thing.  He was concerned with my wellbeing, took responsibility for his actions, and deserved nothing short of immediate forgiveness.

Toppbild-handshake-Mostphotos-fri-252622-man-and-woman-shaking-hands-with-path

Expressing a response of kindness

Thanking him for his integrity and sincere apology, it was somehow easy to  shake his hand and respond with a message of kindness.  Agreeing the insurance companies would work out the financial issues, our clear understanding was that the gentleman was clearly at fault.  I felt compelled to assure him of the absence of resentment or anger toward him.

As we shook hands again upon leaving, our polite agreement was that it was just an accident, and that it had happened because we are imperfect and make mistakes.  It was a heavy, bumper-to-bumper rush-hour traffic jam, and we were grateful only the two of us were involved.  Accepting this perspective on the situation helped immediately dismiss strong negative emotions and shift attention to thankfulness for the good aspects of the otherwise generally negative experience.  Considering that we both walked away in “one piece”, no one else was hurt, and we amicably communicated at the side of the highway, we had much to be thankful for!

black-butterfly-photography-pretty-road-Favim.com-319704

Bright spot in memory of accident

In the midst of the early pain of injuries, the gentle human connection with the other driver remains now a little glimmering bright spot in memories of the traumatic experience.

Sometimes we feel justified in our anger, but we are not forced to exercise that “right”.  If someone causes injury for reasons such as mal intent, criminal negligence such as drunk driving, over aggressive driving, or road rage, it might still behoove us to show charity of heart and pity them for their poor self-control and lack of wisdom, and not focus the inwardly destructive potency of hatred upon them.

Many times these infractions ultimately put the erring doer in jail, with severe legal punishment, fines, and restitution.  We should choose to let that be enough.  God’s important message to us in the Bible on this issue gives us that better perspective.  “Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, vengeance is mine; I will repay, saith the Lord. Therefore if thine enemy hunger, feed him; if he thirst, give him drink… be not overcome of evil, but overcome evil with good.” Romans 12: 19-20.  The negative emotion of resentment hurts the one who hates more than it affects the object of such feelings.  Just as forgiveness is emotionally and spiritually healing and freeing, resentment and hatred bring a painful grip that hurts and damages the hater more that the hated.

thDRVL3I34

How many times must I forgive?

Jesus said we should forgive our brother that hurts or wrongs us, not only seven times like an inquirer had suggested to Him, but instead we should forgive them “seventy times seven”.  That comes to 440 times!  It seems pretty clear that He did not infer that we should stop forgiving the 441st time someone wrongs us, but perhaps by then we will have well exercised our ability to forgive with reasonable success.

thL96KOAO8While it is impossible to count the number of other people throughout time who have ever lived on the face of the earth, Jesus bore the sins of all of us in His body on the cross, that He might bring us to God.  He offers lasting forgiveness to us, not at the side of the road, but at the foot of the cross.  If we will accept his sacrifice there for our own sins, and receive his offer of love, forgiveness, and eternal life, we can walk away spiritually healed and whole.  The apostle Paul explained, “for the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord” Romans 3:23.

The body will heal, although lupus may flare after trauma, that will pass in time.  More important than the healing of our body, or any flares of chronic illness such as lupus triggered by trauma or stress, is the healing of our heart, soul and spirit.  Sinners like me who are saved by God’s gracious undeserved kindness, can choose to extend the healing of simple forgiveness to fellow sinners who happen to collide with them on the roadway of life.  With God’s help, I can, too!

Forgiveness does not happen by accident, but rather it is a choice.  I have made mine, and as a result, am well on the road back to health!

Lupus and not sleeping but still singing in the rain

Rain splashing on the window

There is nothing quite so satisfying for a college student as getting the paper finished, just right, proofread and printed — ready to hand in the next day.  Pleased with self and ready to snuggle into bed for the night and sleep in the sweet peace of readiness.  All is well as evening medications are downed, slumber time routines done, and tucked into the covers.  Here in the darkness, listening to the rain pouring outside in the chilly evening just beyond the bedroom window, soothed by the quiet murmuring of rain splashing in puddles and gently sloshing against the glass.

thM1WVJBMO

Living by the ocean means rain!

There’s no rational explanation for why the rain brings on such a quiet excitement, except perhaps so many childhood memories wrapped up in the blanket of glorious rainy days.  Living by the ocean will change anyone’s opinion of rain deeply, to either detest or delight.

Rain triggers the memories rushing back to the carefree, worry free days of childhood.  Skipping along in the rain, splashing in puddles, emulating Gene Kelly while he danced and sang.  Perhaps my childhood motto was “singing in the rain” since I loved the driving, pouring, pounding storms the best.  There was nothing sweeter than strolling in the rain, arm in arm with mom!  Sometimes, we would sing as we walked… precious memory.

100_1142

Over this and loving the rain!

Even so, ever so briefly my fascination with rainy days and nights was shaken, after a violent monsoon Labor Day thunderstorm storm sent a towering 80 foot Eucalyptus tree into our house a half-dozen years ago.  But, over the trauma now, trusting the rain returned.  Although briefly shaken, friendship with stormy weather is restored!  Back to lacking reason to adore inclement weather.  Why in the world is its allure so great?

It is not logical to love the rain

It really is not logical!  Lupus arthritis doesn’t like the rain.  Neither does the accumulation of osteoarthritis that accompanies a history of several joint and spine traumas.  So, on nights like this when the bed is comfy and warm, but body pains just will not permit sleep, it makes no sense to like the rain.

I curl up in the dark praying for those I love, some far away and some very near.  Trying to make good use of this time to commune with the Lord, intercede for others, and redeem some good use while being frustratingly awake.  I know He hears in the dark, and perhaps the sole reason sleep eludes is to pray for God’s help for another.  This is reason enough to rest here all night in the dark without sleep.

Finding joy in the rain!

But, still laying here in pain brought on by the barometric shift, it still seems wonderful, and the hours are occupied sleeplessly listening to rain, rain, and more rain.

Others all around earlier today grumbled as they darted from car to office.  But this silly gal’s reaction?  Loving it, senselessly, and determined to find joy in the gloriously pouring rain.

Rain, rain, don’t go away…

At last sounds of morning begin to stir in the neighborhood around the house, and out on the street early commuters start their cars and the noise of splashing traffic sends a signal to get up.  Not the first or last slumber-less night, but at least there was a symphony of showers to not fall asleep to.

Goodnight!  Its morning!

Back to school a little late with lupus

Road sign saying College Just Ahead

Returning to College

Returning to college after a 34 year gap has been an exciting adventure, and after the finish of the first class, the jury is in with a verdict.  This IS possible, even with lupus.  Finding an adult degree completion program that would work with lupus was essential.

Early morning college classes were not an option, so traditional college was out of consideration long before planning to going back even started.  Planning activities in the morning with lupus is never a good idea!  There had to be a better way.

College fund label on glass Jar full of dollar bills

Figuring out the funding

When a program was located that would honor all the work put in over four years of college, split between two schools, and make the most of it to complete the degree, I was glad.  The second college started an adult degree completion program a year ago, and they began sending out emails.

After figuring out the logistics and funding, the day finally came for registering and signing up on the dotted line!

College library books on shelves in the stacks

Plenty of work, but no exams!

It was finally time to go back to school, and it was both exciting and a little scary.  An unexpected blessing came on the first night of class in January, when the professor announced there were no exams!  A brain, sometimes impaired by short-term memory problems from lupus, heard that news and did an exuberant back flip!

What could be better than that?  Lots of books to read, awesome!
Major research to do, how fun. Lots of papers to write, bring it on!
Presentations to make, even better.  But, no exams? Absolutely perfect!

thNOQ98AWP

A thing or two to learn!

Now, class number two is already underway, with one down and 13 more to go after this one.  June 2016 does not seem too far away and with prayer, some amazing support from my husband, quiet lupus, and the grace of God, graduation will be 17 months from now.

In between, there might be a thing or two to learn!

Lupus and the adventure of finally finishing something

Senior year of high school

Finishing Something!

Finishing something

There is no feeling quite like setting out on an adventure to finish something that has been waiting a very long time to be completed. So it was this week. After a long thirty-four year interruption, there was finally enough health, time and money to return to college to finish a nearly-complete bachelors degree.  Thirty-four years was time enough to equal more than half of a life, filled with countless challenges and blessings.  Yet, this was the one undone endeavor that still carried a sting of lament.  After investing four years at two colleges, the final semester of college was never completed.

Over the intervening years, a lot of stuff happened!  Enough years had passed to,

  • Love a husband more than a third of a century
  • Work long enough in a career to earn a pension and start to think about retirement
  • Conquer great financial hardship and recover, and go on to own two homes
  • Face the threat of imminent death three times
  • Raise two children and watch them graduate from high school and college
  • Watch children marry and enjoy four grandchildren
  • Lose one parent suddenly and lose the other slowly to dementia

Why the long wait?

Paying medical bills

Paying medical bills

Why did it take so long to get to this point? In a couple of words, life and lupus got in the way!

Several times a target date was set and never worked out.  First, after taking a semester off college to get married, a baby [note, the pill does not always work!] was soon on the way and a prayerful decision reached that my husband needed to finish college first since we had started a family who needed nurturing.  We assumed my degree would quickly follow, as soon as toddlers went off to school.  But, when severe asthma shattered those plans my husband’s medical bills equaled enough to pay off a house (without ever having a house to show for it.)  Somehow we paid all the bills, but it took seven years, and thankfully, without declaring bankruptcy.  It was a small price to pay, and we were grateful, because the doctors saved his life!

Sober concerns about my husband’s long-term survival made him urge me to find a job that could support us right away as well prepare me financially for the very real possibility of losing him.  So, this meant going to work without finishing the degree.  Even then, Lupus was lurking around in the shadows, but still had not introduced itself properly.

As kids went to school, their dad was home, through kindergarten and several years along.  This meant my job was the sole support for the four of us for a while.  It was a great blessing to see God’s wonderful provision meeting our financial needs through my new career as a paralegal trainee, over the next three decades promoting through the law office ranks to government law office management.  Eventually breakthroughs in asthma medications stabilized his health, but by then our children were a little older and my career was well-established.

Trading places!

Photo Lupus Adventurer's Daughter-In-Law

Photo by Lupus Adventurer’s Daughter-In-Law

Then, we traded places.  lupus came out of hiding while he regained health and became the strong one.  As children turned into teenagers, lupus was in full flare with arthritis, fatigue, rashes, mouth ulcers and deep gnawing bone pain.  Many nights spent in a chair rocking back and forth was sometimes the only tolerable way to pass through those early morning watches.

Then, while grieving my mother’s death, opportunistic lupus rampaged through my body, targeting my central nervous system and muddying memory, coordination, speech and analytical thinking.  That was the year lupus moved in like an unwelcome intruder, threatening my career and nearly completely disabling me.  When abdominal artery ruptured, nearly taking my life, while our kids struggled with a mom who got confused, forgot things and was struggling to stay afloat.  When there wasn’t enough of mom to go around, there was also complete peace that husband and children were the priority that came first.  College was never even a consideration because of time and money.

Finding an open door

Two important questions

It did not make sense to put personal goals first unless it made sense to heart, budget and what mattered the most in the depths of my heart.  While wishing I could finish college, other commitments and priorities mattered far more. Character and patience required waiting until a right combination of physical health and strength, priorities and schedule, and financial resources and wisdom would (ever) add up an open door.  A final decision also required defensible answers to two important questions, especially this late in the game:

  • Would there be enough return on the investment to make spending the money a wise financial investment?
  • Would the degree contribute enough to reaching future goals to merit spending the necessary time and energy?

Regardless how long it took to get here, there are no complaints about the wait. It was always clear when God used events to deliver a very personal message that not all moms should be “stay home” moms, and not all moms are supposed to get their college degrees before their kids do!  Sometimes, God calls a few of us down a different, sometimes difficult path to help us understand His love and care through the struggles.  Now, it makes sense to spend the time and money on getting the degree completed. It will boost earning power and open up a wider arrange of choices for a meaningful semi-retirement second career.

Back on campus!

So, this week it was thrilling (and a little nerve rattling) to become a college student once again.  On-campus classes are held one night each week for the next eighteen months as part of the degree completion program. Someday husband, daughter and son — who all finished their college degrees (daughter has two) — will assemble to watch mom put on cap and gown and cross the stage to receive her diploma.  This is the time to make it happen, lupus and life not withstanding!

2014 in review – Lupus Adventures Between the Lines

WordPress.com prepared a 2014 annual report for Lupus, the Adventure Between the Lines…

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 60,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 22 sold-out performances for that many people to see it.

Click here to see the complete report.

Thank you!

Thanks for reading!

A very special thank you goes out to regular readers and other visitors who have shared their lupus adventures, challenges, comments, emails and various thoughts here.  Every reader contribution has made a difference to me, and other readers have expressed how comments often strike common threads with their own experiences.

2014 was a year of great personal ups and downs, including the difficult loss of my father on the evening of July 4th.  Amid the fireworks of Independence Day, after suffering with Alzheimer’s for five years, my father had his own unique independence day of release from that very difficult struggle.

July was indeed the low point in being able to share my lupus adventures, as I struggled with grief and the needs of family and his affairs, writing was pushed aside.  Only one post was published during the month.  The many kind words and thoughts of condolence received in comments and emails from many of you were so appreciated!  You helped make a difference in my grief experience, encouraging and touching me greatly.

ELLENBIGTAB - WIN_20141206_002632

Thankful for each of you!

It is important to take this opportunity to stop and share thankfulness and gratefulness for being allowed to share this great lupus adventure with each of you!  My continued hopes and prayers are that my pondering and perspectives on lupus and its impacts will help you, too.

I have also been blessed to hear from those of you who expressed a common fellowship of faith in Christ, and appreciated you sharing your thoughts and experiences.

Whether your are a lupus patient or are impacted in some other way by lupus, I am deeply humbled and honored that you have visited here and shared precious moments of your own journey with me!  May 2015 be a year of many blessings and few flares for each of us.

Lupus and the Year of Unseen Adventures Ahead

WP_20141223_03_30_52_Pro

The year before us has promise and hope,
waiting outstretched just ahead,
Month after month, new choices to make,
each day as we rise out of bed.
Where will our road lead, where will we be
when a year rolls around once again?
Will there be progress, victory, growth,
or just stuck where we always have been?

Challenges, true are no easy path,
worth striving to traipse intentionally well,
In sickness and health, whichever shall come,
it’s a marriage of sorts to be ill.
Unwilling partners, my lupus and me,
but still joined at the hip and heart,
Morning by morning, reminded it’s there,
but wishing that it just would depart.

Some choices just cannot be made,
like whether to be an autoimmune me,
But others we exercise with volition and grit,
to make each day the best it can be.
By the end of this new year, we can purpose to say
that we’ve done better at last,
Taking control, living wisely and well,
making the most of the year that’s just passed.

So this day is the beginning of a fresh new walk,
through our adventures yet unseen,
Promising the mixture of challenge and joy.
When its done, what will this year have been?
Hoping, praying earnestly for myself
and for the journeying companions with me,
That God will enable us to triumphantly go,
and not under, but above our circumstances be!

By, Lupus Adventurer
© January 1, 2015

WP_20141223_03_46_28_Pro

Lupus Adventurer reflects on the first Christmas

One Perfect Lamb

Down from the glory of eternity’s home,
a baby was born as a carpenter’s Son.
Willing so humbly to enter our world,
Creator and Master, the Savior did come.
History splitting, prophecy fulfilling, sin forgiving,
life transforming man,
Jesus Christ, both Son of God and son of Joseph and Mary,
a miraculous plan.

Three decades passed without one wrong or sin,
lived as the One Perfect Lamb.
He offered Himself, life and blood for man’s sin.
Buried three days, He arose up again!
Overcoming sin, death, sickness and the grave,
giving life unto all reborn men he would save.
Accepting His gift, true forgiveness is found,
New life, new joy, and truest Christmas blessings abound!

Thank you for letting me share my poem from several Christmases ago with you again, this year.

Jesus Christ is my reason for Christmas!

Merry Christmas,
Lupus Adventurer

Copyright 12/24/2010

Lupus adventures of a rain-washed garden morning

Gentle rain fell in the night

Gentle rain fell all night

Outside gentle rain fell steadily all night long, playing its soft mumbling music as lupus neuropathy and sleeplessness led to a first cup of decaf tea. Soon, the cup was cool and empty, and in the dark chill of night, it’s comfort and warming gone.

More cups followed in a cycle of comfort and cooling until the counting was lost and the morning was nearing. Sitting alone on the counter, a white saucer held a half-dozen soggy tea bags and a single spoon.  Then, exhaustion overwhelmed and sleep was at last possible.  Many long days filled with many concerns had also weighed heavily on a mind much too troubled with the cares of life.  Added to lupus and it’s challenges, stress and auto-immunity had taken their toll.  But, at last, there was sleep.

grass

Soaked grass glistened

A few short hours later, morning came especially hard.  But the outside called, and the yard was unusually fresh and scrubbed by the evening’s showers.  Soaked ground glistened, and the moist lawn was saturated.  The air was crisp, moist and fresh, and filled with aroma of damp leaves and soil.  A chorus of giddy birds filled the cool morning air with vibrant chatter, as their song rose in the peaceful freshness of the morning.

It seemed that for a few moments, time stopped for me to briefly to experience the pleasure of a perfect, peace-filled instant. Gently slipping into the porch swing, leaning back and inhaling deeply, my eye lids closed so all my senses could taste and drink in the delightful morning.  If ever there was true simple bliss in this humble mortal world, it can surely be in simple joy of a perfect restful pause such as this!

Creator

Mighty, caring Creator!

Soon rejuvenated beyond the fruits of my shortened slumber, thoughts of prayer and gratitude formed in my heart and mind.  Such rich blessings placed all around me by the hand of a mighty, caring Creator, just waiting for me to notice and appreciate.

Did He envision the comfort and encouragement such an instance like this would bring?  In His infinite knowledge, mercy and love did He plan for even this single moment’s small blessing?  Who can know a weary heart’s simplest, and also deepest needs.

The God of my undeserved salvation surely does!  In His matchless mercy and kindness, it would seem He planned for providing even simple joys like this!  Prayers of words alone were absolutely inadequate, as in my grateful heart deep emotions mingled silently with unspoken thoughts of thanks.

Chilled air rushed deeply in with each breath, filling the deepest corners of my lungs with coolness.  It seemed within a few brief seconds weariness vanished, and a deep calming rest supplemented for lack of true sleep. Lupus not withstanding, my body felt strong and restored!

The day called

The day ahead called urgently

But then, the day ahead now called urgently, ringing its intrusive alarm to pull me toward resuming thoughts of responsibilities and care.  It promised to be busy and full of much to manage and do, but I was now ready for the schedule ahead.

Perhaps these moments are the reason we build porches, manufacture patio tables and chairs, and spend hours and small fortunes on landscaping and lawns.  We surround ourselves with these iconic items, hoping for snippets of time like this to enjoy ourselves in their midst.  For these precious glimpses of perfectness we plan and prepare.

Lupus and believing in mornings...

Chorus of generations of birds

Yet, it would have been too easy to slip right past this common opportunity, to forget to stop, sit a spell, or savor the beauty of finding this moment of perfect peace.  This is a nearly eternal moment.

Time has not seemed to move one second between stop off points, between the strung out lifelong series of moments like this.  They all seem somehow connected, and that perhaps generations of birds have seamlessly continued the same choral masterpiece, falling long ago upon ears of a seven year-old girl — and who now sits on my porch as a grandma!

Fluttering

Fluttering from dandelion to dandelion

Moments like these are when all seems right with the world, and the soul of a little girl returns to my heart.  Decades — no, half a century — has passed and it seems like that the same little girl who sat in the cool brisk dampness of her mother’s backyard, reveling in the birdsong, moist grass, flowers and earthy fragrance, is here, now.

No time has passed at all, and perhaps she is really the same little girl sitting on this back porch today, slowly sipping the delights of this morning’s fresh washed yard.

She closes her eyes and finds the same pure enjoyment of morning as did the little girl of yesterday who sat wiggling her bare toes in the soothing wet grass of her mother’s breezy back yard, patiently watching a Monarch flutter and float from one dew-kissed dandelion to another.

Both girls closed their eyes and savored their precious gift of morning.