One Patient's Positive Perspectives

Posts tagged ‘prayer’

Lupus Awareness Month, Manicures and Missing Toenails

WP_20141129_15_16_32_Pro (1)Infusion day seemed a fitting event for experiencing Lupus Awareness Month with flare.  With the day spent in a circular junket around town, my little PT cruised from doctor to doctor for treatment for lingering problems from a recent car accident, and then to an annual Plaquenil eye check up.  With two hours to spare, I stopped in for manicure and a pedicure, and had an interesting discovery.Hair curls, manicures, pedicures but no lupus cures...

When the nail tech removed the bright purple nail polish, she noticed that the big toe nail had separated from the nail bed, but without any apparent reason such as fungus or infection.  It appears my big toe nail completely died, and the nail stopped growing several weeks ago.

The salon suggested that trauma during my late March trip and fall at the shopping mall killed the nail.  Perhaps while scuffing knees and straining the ankle, the nail bed base also sustained a hefty wallop on the edge of the cement step or the sidewalk.  The nail salon urged me to show my toe nail to the nurse while at the rheumatologist’s office for my monthly Benlysta infusion.

The verdict,  “Expect to lose the toe nail soon.”  Well, it seems the summer  fashion forecast lacks any nail vanity, and just in time for sandal season.  It will be interesting looking for closed toed summer shoes for a niece’s late July wedding.  What fun!

The infusion was the last planned stop of the full “medical” day.

infusion in handThe afternoon passed in the infusion chair with a monstrous accounting textbook perched on my lap and a fresh yellow highlighter gliding across the pages.

Eventually it was hard to pay attention to studying for my college class.  The friendly chatter of a couple of other patients getting RA infusions was more engaging than dwelling on the accounting formula, “Assets = Liabilities + Owner’s Equity”.  Without asking, it was clear they obviously didn’t want to chat about accounting!

No one does.  The reason is hard to pin down, but no one else seems to get very enthused about chatting about or otherwise dwelling on accounting theory, either!

Lupus adventures in accidental forgiveness at the side of the road

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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.

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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.

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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!

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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.

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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.

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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.

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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!

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.

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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

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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

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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.

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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!

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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!

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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.

Catching up with lupus adventures

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Writing in the darkness of midnight

What gets put aside during grief?

Sitting down at my desk and writing seems like such a simple thing to do.  Writing has become an essential part of me. But, lately, life has been getting in the way!  Keeping up with my full-time job in a government law office, keeping house, keeping a husband fed and keeping track of all the details in my life has consumed me.  Adding the grief of losing a parent to the mix compounds the challenge and impacts of a busy life with lupus.

What continues to get pushed aside?  Writing!

So, while my husband is already tucked in for the night and emitting sonorous tenor songs of slumber, I sit alone at my desk basking in the pale light of the computer as it casts a gentle glow into the otherwise darkness of midnight.  Not really alone, I guess, since you are here reading, joining me in the written frozen moment of time.  As I write, I am thinking of you, my reader, and what I might share from the recent days or even this moment to help or perhaps encourage you.  Perhaps in these words you will find a common experience to something you are journeying through, and perhaps by me explaining my present reality, you will be strengthened.  I find it helps to understand someone else’s similar journey, to help me feel that I am not alone.

 Thinking more about mortality

Lupus in a complex lifeI find myself thinking more about my mortality, praying as I move about, talking to God about what I am thinking and feeling as I drive around in my car and move through my day.

I think about the fact that both of my parents are now gone, and that this has instantaneously made me a part of the oldest generation of my family.  Suddenly losing the first parent, my mother, was a very different grieving experience than what I find myself passing through now.  This is a loss of everything that was the idea of my parents, as the couple and team that nurtured, shaped, loved and guided me through the first half of my life.  They are my first memories, they were my source, anchor and shelter from the beginning of my being.  They loved me unconditionally, although imperfectly, and I was always one of their five precious children.

Grieving slows the pace of life

My parents loved each of their children with a unique and customized relationship, and encouraged us to find our own personal path and calling.  My siblings and I were very blessed to be their children.  Now, they are both gone, and we are here without them.  Life will move on, but not just yet.  Grieving slowed the pace of moving forward with life, causing me to pause and linger in the memory rich time of this great loss.

Now, it seems the state of being an orphan has come.  Neither  destitute nor abandoned as I am blessed as an adult to have an established life and family of my own.  An orphan, nonetheless, but not as the state of child orphans so often can be in the loss of their provider and shelter, but finding myself an orphan of the heart.  My heart misses the fellowship and love that will no longer be shared with them.  I mourn the idea of “them.”

I think mourning has stressed my health and at times causes flares of my lupus.  Yesterday was a an especially bad day, gnawing bone deep pain in my legs and arms interrupted my routines and  forced me to stop and rest.  In contrast, the day before was a great one, as I was talking about how I felt my health was on an upswing.  Today is somewhere in the middle, as I am finishing this in the morning, after a few more hours of sleep were finally captured.

Probate adventures in patience

Photo by LA's Daughter-in-Law © 2013

Photo by LA’s Daughter-in-Law © 2013

This past few weeks I have worked diligently on the probate matters for my  father’s estate.  I am the executor and have the job of marshalling his assets, paying his final bills, filing his estate taxes and distributing the proceeds of his remaining life savings.  Knowing that I will be able to sign a sizable check and mail it to each of my siblings as a last act as executor of the estate is a pleasant outcome of the loss I am still grieving.  The whole “marshalling of assets” project has become much more time-consuming and difficult than I ever imagined!

About a month after my father died, and after the probate was filed by my lawyer, the letters of appointment as Executor arrived from the court.  So, I set met with the personal banker at the bank where most of my dad’s money is held. The meeting lasted for hours, as we reviewed different CDs, accounts and broker investment details and the banker was on the phone and communicating online with their legal department in New York.  Once the process of converting accounts started, it took four more weeks to get the money moved into a new estate account. Many phone calls, emails and meetings were  required before the estate account was funded.

Paying my father’s bills

I was waiting to pay my father’s last bills to his residence facility, doctors, dentist, pharmacies, and other miscellaneous final expenses.  The smallest of these was the fee due to the on-site hair/nail salon, and this one was so impatient they kept calling and sending emails, threatening to send the bill to collections for the mere $60 owed to them!  I told the persistent woman she would need  to be patient and wait, and after each encounter would hang up the phone and sigh.

When I spoke with my lawyer about her, she and I rolled our eyes and laughed together over the absurdity of the woman’s impatience to collect such a small sum.  So, when the money finally was available, I sent out a check immediately for the balance due, including late fees, along with a thank you letter for the services they provided to my father!  I just felt compelled to choose the high road.

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