One Patient's Positive Perspectives

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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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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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

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