One Patient's Positive Perspectives

Hands of Woman Using Laptop Computer

Shut down a little early

Off to class, but not quite making it

A stressful event has just occurred, and once the dust has settled and the adrenal rush quiets down, next comes the inevitable question.  Will my lupus flare?  Traumas, losses and major life events have an effect on everyone experiencing them, but the impact can be more intense for someone with an autoimmune disease like systemic lupus.  Only time will tell, but I will do what I can to help prevent it.

Earlier this week, like every Tuesday night, when 5:00 p.m. arrived, the computer at work shut down a couple of hours ahead of normal schedule, and a current project file stashed into a waiting tote, along with cell phone and a note or two about calls to make from home the next morning.  atypically time conscious on Tuesdays, the quick dash to my parked PT Cruiser takes three minutes flat.  The seat belt “clip” sounds at 5:05 and soon the little PT  is off and rolling!

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Need gas before crossing town

On schedule, but alerted by a sound from the gas gauge, the little PT must first head off toward a gas station on the way to the outer loop freeway.  With plenty of time to spare for the stop, it feels good to be on schedule.  Soon we, driver and PT, are merging onto the highway, on our way across town for a 6:00 p.m. degree completion class.

The Bluetooth cell phone speaker rings on the visor.  My boss calls for a quick conversation about the status of a pending job offer to a prospective employee.  That done, thoughts turn to the leadership topics we have studied at school, and the joint presentation my group will complete tonight.  We are nearly ready to present it to the class next week, and just need a little more time after class to tweak content and coördinate our plans.

Silence, sounds and a sigh

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Still gripping the wheel

Leaving the radio off, the silent noise of my thoughts is plenty of company.  Up ahead, lanes are full and alarmingly tight with traffic.  Suddenly, the PT brakes must slam down very hard and fast, quickly stopping behind the forming traffic jam.  After a little controlled skidding,  we came to rest a safe distance from the car ahead.  The sighing thought forms in silence, “It is a good thing my little PT likes hanging back from the crowd of cars ahead, so there was room enough to make this urgent stop.”

The jarring sound of metal on metal instantly shatters the silence, and a millisecond later overwhelming force pounds through my body from behind.  Still gripping the wheel, startled and shaken, awareness shifts to assessing emergent issues in a mental checklist: 1) am I okay? 2) get out of traffic 3) how bad is it? 4) how is the other guy? 5) call 9-1-1.  By the time I got to the end of my checklist, I was in the emergency lane, out of my car for safety’s sake, leaning against the barrier, and put down the cell phone when I looked up at the other car and realized highway patrol was already on the scene.

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Grateful it wasn’t worse

A little bumped and shaken (okay, a lot), and very frustrated missing my college class, I was just grateful and thanking God it wasn’t any worse. Stinging, quickly tightening  muscles in my back, neck and arms made it clear that going to class was no longer in the evening’s plan.  After the officer pushed the man’s disabled pickup to the emergency lane behind mine, we answered questions and the officer returned to his patrol car with our licenses, insurance information and vehicle registrations.

Both drivers turned to cell phones to reach out to family, and in my call to contact my professor. The officer returned, offered to call paramedics for me, and held out a printed preliminary police report to me, and still holding the other copy in his hand, told me I was free to go.  I heard him turn the gentleman that hit my care and start what sounded like a more intense conversation.  I presumed to give him a traffic citation for causing the accident.

Back in the saddle, sort of

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Headed to emergency room

Back in the saddle, and merging back into traffic and exiting the freeway, the side streets seemed the most welcoming route home.  My house was only five minutes away, so after driving with much trepidation, arriving home was a relief.  I met my husband at home and he took me to the E.R. for a check up.  After my spine x-rays were reviewed they gave me a muscle relaxer (Flexeril) and instructions to take Ultram for pain.  I took the next couple of days off from work to rest and let my hurting neck and back recover.  The day after the accident, the man’s insurance company contacted me to assure me they were accepting full liability, and would take care of my car repairs, a rental, my medical expenses and any other impacts from the accident.

We are unable to choose what life or traffic throw at us, but we can do what it takes to care for ourselves once it does.  After a couple of days resting, I sat down at the computer and sent my two papers to my professor by email that were due to turn in the night I missed class.  While resting over the weekend, the next thing was to finish writing the last paper for my class that ends next Tuesday night.  The project presentation my team is giving on Tuesday was almost ready before my accident, so I am grateful we did not procrastinate on the project, so that I was able to fully rest when I needed it most.

going to work

Let’s be careful out there!

The rental car will delivered early Monday morning, and then it will be back to work for me.  Life moves on, trauma or not, so we slide back into the groove of daily life pretty quickly in the wake of life’s bumps and bruises.  Perhaps because of the lupus, we can take these minor setbacks a little more in stride, after learning resilience from the stuff lupus throws at us on an ongoing basis.  Just like lupus, so too with car accidents.  We cannot pick the traumas and challenges we will face, but we can be grateful for what is good in our lives, and make the best of what is, without worrying too much over what we do not have or may have lost along the way.

And meanwhile, let’s be careful out there!

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!

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!

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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!

CNS lupus involvement

CNS Lupus strikes unexpectedly

Just when you would like to hope and think it is gone forever and never coming back, lupus brain fog and crossed wires show up again, unexpectedly.  It is not that the head is not on straight, it is just that sometimes, just for a moment, it is unclear what week or day you are in, or what subject you just wrote an email about.  Recently, several similar projects overlapped in the same time and space, and it was a sure prescription for a mental mishap!  While finishing up interviews for one vacant job, new applications just started coming in for another.

Here is where the confusion starts.  Keeping the two recruitments straight was a mental quagmire.  The call was placed just a little too early on a Monday morning for the normal state of my “lupus brain,” and a group of questions were asked and answered as I spoke with an applicant’s work reference.  All throughout the call, it seemed odd how much all the answers were describing skills and abilities that fit the other open job, perfectly!

Too early on Monday

Returning to my office to re-do the form

After filling out the title of the position on the required form for Human Resources and filling in answers in the comment areas, I signed it.  It was then I realized things had gotten a little murky.

Walking over to my assistant’s desk, I began explaining how unusual it was that the applicant seemed to fit the other position, but not the one she had applied for.  My assistant looked up at me with a very quizzical look, explaining that the answers fit the position that applicant was seeking!

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Crossed wires!

The sudden realization hung heavily in the awkward moment, as humility stepped forward, compelled to admit to a mental crossed wire.  Reclaiming the form, and returning to my office to redo it, the correct job title and all the answers were copied into a new version.  Now, the applicant seemed to fit the job perfectly, and even qualified for a second interview.

It is amazing what a little central nervous system lupus can do when you least expect it!  It might even inadvertently alter the course of someone’s career, if not kept in check by a good assistant, not afraid to say, “what are you thinking?” when it is needed most!  A good assistant is hard to come by, and no, you cannot have mine!

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!

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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!]

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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