One Patient's Positive Perspectives

Posts tagged ‘blessings’

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 Adventures Sojourning in the Land of Learning

My Cheering Section!

The Whole Cheering Section!

Finally done!  A two-year long scholastic adventure closed with long-awaited pomp, circumstance, and enthusiastic celebration of family and friends.  It is finished, and the Lupus Adventurer is returning to her blogging home, after sojourning long in the land of learning.  Graduation came as a sweet finish to a college degree put on hold for over thirty-five years.  Returning to college after a 34 year gap was a deeply fulfilling, challenging, and mentally invigorating experience.  Concern that the risk of lupus flares might increase with the added stress of school studies fueled some real trepidation at the beginning, and could have been a valid reason not to try.  However, after being on Benlysta infusions for several years, my health had never been more stable.

Over the years our children grew up, married, and five beautiful grandchildren graced our lives.  Finally health, family needs, and personal priorities were in a place where it made sense.  Personal values put the needs of children and family first, so with great peace of heart college held lowest priority.  Just like many other lupus patients, the years are peppered with various milestone health challenges.  Always thankful for the education received over four years of attending college, a lingering desire to tie a bow on the unfinished degree never lapsed.

th2C28Z9N0With all the credits aging quickly, after ten years had passed without going back, traditional college degree programs required starting all over again.  Until schools began offering degree completion programs, there was little opportunity to consider reviving a quiet personal dream to finish it.  By the time our children were in school, my career was in full stride and lupus was flaring as an unwelcome life companion.  Keeping  up with the demands of home front and work took daily doses of love from husband and family, and the abiding strength gifted though the daily grace and mercy of a walk with God.

With a husband’s support and encouragement from all the corners of life that mattered the most, it is finally done.  After deferring my desire to finish my college degree for many years due to the events and obstacles of life, choosing the priority of putting my husband and family first, and waiting contentedly upon God unless and until He showed me a time when it was right for me to do it.

So, I prayed my way through countless long nights of arduous study, and stretched my brain and heart to embrace and comprehend new ideas and understand new concepts.  Scores of papers were written, supported by hours and hours of academic research.  This was the type of college experience that made me better and my work, and helped me professionally grow.  My husband, family, friends, employer, and co-workers cheered me only continually.

Senior year of high school

College was harder work for me being a lupus patient in my late 50’s who works a full time in government management.  My sleep hours were often deprived, and the hours of study almost always went beyond midnight.  As a result, perhaps, there were some increased health challenges along the way.  But, now at age 59 it is clear that it was a deeply rejuvenating experience.  Study at night after my demanding day job, together with class time, reading text books, and writing innumerable papers were difficult at times.  During the second year of my studies, our son and his wife and family moved in with us and we spent a blessed year as a full household of nine.

Our five young grandchildren brought joyful love and laughter into our hearts, and they prayed for me and encouraged me daily with their hugs and kisses, warmth and smiles.  I felt like my cup of family love was overflowing and spilling out all around me – my heart was full of joy, despite the normal stresses and challenges of sharing our household.  We got to know and love our grandchildren even more deeply and intimately that was ever before possible, and so this will be an ongoing gift to all of our lives for years to come.

 

Lupus and the recurring visit of the sloth

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Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

Sleep/Rest Goals

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

Lupus and 200 hours with Benlysta

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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

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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: “Dis”ability or This Ability?

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Soothing Warm Dish Water

Washing dishes can hardly be described as an especially inspiring activity, but sometimes during such mundane activities a meaningful thought or two pops up.  So, what do you think about when you are washing dishes?  A couple of mornings ago waking in the first morning light of the chilly winter morning, there was pain.  Cold tiles on the floor chilled the bones of bare feet walking through the frigid dark kitchen.

A pair of stiff, swollen hands welcomed an excuse to soak in warm sudsy water and bubbles filling the kitchen sink.  Meanwhile, my cloudy morning brain struggled to connect.  Painful wet hands drew my attention to thoughts of personally disabling aspects of lupus.

These were not exactly the most upbeat morning thoughts!

Hands slipping into warm dish water almost seemed therapeutic, but the pressure of twisting a wet dishcloth inside a glass brought a painful wince.  Next, trying in vain to grasp and remove the lids from a coffee mug and thermos, after several tries, quivering tendons and stinging knuckles announced it was just time to give up!  With futile efforts abandoned, the stubborn cup and thermos would just have to sit there beside the sink all day, waiting to be opened by the male culprit to come home who had tightened them so firmly the previous morning.

Wordle Disability or This AbilityWhile scrubbing the remaining dishes, amusing thoughts were running around in some foggy grey matter, threatening to stimulate and waken a foggy morning brain.

Disjointed thoughts formed into a series of silly word plays, tossed around during the simple kitchen chore.  Inspired without any clear reason by a glass, dishwater and lupus arthritis, these words scampered around as disjointed musings:

Glass half full or perhaps half empty,
How to be a victor not a victim?
Disability, dis-ability, dish water, dish-ability,
No!  This-ability, THIS ability!
Think instead about ability!
Now, there was a better noteworthy thought!

Even though many activities are painful for those of us with lupus arthritis, there are many activities that are nearly or completely unaffected by it.  These are what we should focus on and be thankful for.  The thought about half full and half empty glasses, and a silly dishwashing soliloquy had triggered an unexpected New Year’s resolution of sorts.

This year should victoriously focus on being thankful for “this” ability and “that” ability that I have, instead of giving the negative aspects of Lupus any undue attention. Perhaps we should be intentionally thankful while thinking of all the verbs (ACTION words) that describe many remaining abilities, such as:

  • doing
  • thinking
  • walking
  • playing
  • sitting
  • standing
  • driving
  • cycling
  • cooking
  • cleaning
  • mopping
  • sweeping
  • working
  • thinking
  • writing
  • rejoicing
  • singing
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What can you add to the list?

And yes, even washing dishes!

What are yours?  What positive actions would you add to your list?

It is resolved, then!  This is the year of this, that and every ability we have!

We can choose to celebrate the abilities we have, while striving to accept and minimize our disabilities with poise and grace.

[Note:  Paragraph two was edited after posting to correct the grossly disjointed sentence about a cloudy brain, written by a cloudy brain!]

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.

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