Lupus Adventurer and Two Interviews

New Chapter of Life and New Resume

A new chapter of life in retirement requires a new resume, so it was time to get busy and draft a new personal marketing tool for a desired new part-time career. After going back to college to wrap up my unfinished degree with four years of college in music, Bible, and general education classes, evenings were spent in a two-year degree completion program ending with a bachelor of science degree in Business Administration. Upon a careful review of the initial four-year transcript, an academic minor in music was also granted, along with cum laude honors at graduation.

One of the marketing course projects was developing a written business plan and a marketing plan. This included the milestones and steps that would support starting a part-time business as a private music teacher and substitute teacher. Some of these details included getting state substitute teacher certification, writing a music resume, and networking with some nearby private and charter schools. With the 2023/2024 school year just beginning, these goals were accomplished: the the approval of substitute certification, a finalized resume, and substitute teacher applications submitted to four local schools.

Interviews Leading to Onboarding

It was heartening to get overnight responses from three schools and to be sitting in two interviews yesterday that led to solid job offers for substitute teaching in two charter schools and a private Christian school. It is exciting to anticipate going to work one or two days per week as a substitute teacher in music, technology, or general classrooms. Substitute teaching sometimes gets bad press, but it seems like something that will an exciting adventure in coming years. A love of working with children in church programs over the years and a natural talent for teaching expressed in business settings over the past thity-plus years makes the idea of substitute teaching sound like great fun, not something fearful! Also, teaching piano lessons to my grandchildren fanned the flame of my love of working one-on-one with children.

Much thought and prayer was given to how working in retirement might affect Lupus, and a two-day per week maximum is the goal, leaving the other three days free to attend exercise classes at the gym, work on sketches for a drawing class, spend time on watercolor painting, and attend greeting card making classes. This leaves time to play the piano and work on practicing vocal music for upcoming church services. Also, with social security there are annual dollar limits on earnings before mandatory reductions in benfits kick in, so earnings should stay comfortably below any problematic amount.

While grateful and blessed to have our budget needs met by a public service pension and social security payments, the earnings from substitute teaching are targeted for “fun money”, vacation, and special projects. Since substitute teachers are in high demand, especially after the Covid-19 pandemic, there are strong assurances there should be more requests for help than necessary to reach the two-day per week goal. There should be more than enough requests for help from the schools.

Lupus and Finding Balance!

Always a concern with Lupus is the risk weariness from overdoing and the possible detriment this can be to Lupus! There is nothing more disheartening than wanting to do more than there is energy to, or not being able to enjoy life because of flaring Lupus symptoms. Going back to work part-time will require paying close attention to health issues, and responding promptly to signs of flare or exhaustion. As a substitute there is the liberty and flexibility to say “not today” in order to focus that day on rest or leisure. Part of this new life chapter should be called retirement “work/play balance!”

Working as a “guest” teacher will be an adventure, and perhaps will not turn out the way it has been imagined in my mind. However, it will be something new and different from the four decades spent in “serious business” working in law firms and a local government law department. Embarking on this new direction is filled with an expection of fun and experimenting… a new place to interact with people who just happen to be children, and help them try to continue their learning on days when routine has been disrupted by the absence of the regular teachers. This will be an opportunity to for me to learn along with the students. Every day will be a unique and inspiring adventure!

Lupus Adventurer in a New Season of Life

Seasons of change are part of life, and the past few months and few years have been seasons of change. Writing here was almost a daily expression of my adventure, and yet something suddenly changed. Lupus and Covid combined in a seemingly sinister shift to daily life, and suddenly there was no space or drop of energy to write. Life became all about praying for the daily energy for existing, breathing, heart beating, moving, thinking, and staying afloat… as the waves of health buffeted and tossed a drifting exhausted body. Work invaded the once sacred home front, as Covid-19 caused a sanctuary home office to become the business workplace. The computer became the taskmaster, and work submerged and surrounded every moment there, with no place to escape.

There was nothing left to write after each day’s measure of strength was expended, especially after COVID and Lupus combined to overwhelm and overpower, but only for a time, for a season. There were things that had to be done to prepare for the coming changes.

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In this environment, business became overwhelming and yet the doctor’s adamant orders were, “work from home!” Employers were supportive and understanding, and so Zoom and Teams became the new conference rooms and virtual office, and working in a less personal and efficient environment took over tha space previously reserved for private life. There were no more daily 30-minute commutes to decompress and shed the stresses of the office, and the cell phone became the office phone. Even text messaging was now mixed with personal and work concerns. No getting away, no relief from constant and now overwhelming work demands.

When Covid came, there were just three years left until the magic retirement date on the calendar loomed. Half of that time was fulfilled working from home. But in the fall of 2019, Covid-19 became personal, including the loss of two close family members, and a personal experience with the virus. This included its ordinary respiratory illness phase, followed by a phase with a hospital stay for Covid pneumonia, and then a final phase of a miserable coordinated attack by Lupus and Covid on the central nervous system (CNS). What resulted was something worse and more profound than any Lupus CNS flare of the past. Brain fog, mental confusion, dizziness, loss of balance, and eye hand coordination were all symptoms. There also was a protracted house quarantine, due to the failure of a lupus-disregulated immune system to stop the infection and sustain communicability. From Thanksgiving until early January total physical quarantine was in force, followed by months of slow recovery and withdrawl from dexamethasone and prednisone.

The aftermath of Covid with Lupus complications was grueling. The hospital stay brought on head-to-toe muscular deconditioning, that extended to pulmonary and other systems. Before discharge, even standing up from a squat was impossible, and the pre-discharge physical therapy eval was a total failure. The other gift of Covid was a re-calibrated heart rate and some heart muscle changes that included extreme tachychardia (rapid heart beat), edema, and high blood pressure. Lungs were also affected with Covid-caused intersitial lung problems and trapped air. Doctors refused to permit any exercise until the heart was under control, which took months and heart medication. Before long medical charts all included “Covid-19 long hauler” in the multitude of diagnoses.

The medical team now includes a much broader list of “ologists”, including pulmonologist, cardiologist, neurologist, and of course rheumatologist, as well as physical therapists, and a new primary care physician. Unfortuately, a fall and broken foot at work 12 months ago added orthpedist and more therapists to the mix, and slowed down the progress of reconditioning immensely! Everything post-Covid was exhausting and fatiguing, with no quick solutions or answers.

In all of this, just four months after returning to the office, the 14-month notice of intent to retire was submitted. A successor was promptly hired for cross-training over the following year, and the happy march toward retirement was in motion. At the end of 2022 would be a 65th birthday, the final level of qualifying for full public service pension, and Medicare eligibility. All these numbers had to align to make retirement affordable, and in early January that day finally arrived!

Since then has been a season of decompression, rest, and adjusting to the reality of few demands and total freedom from business responsibilities. This is a shock in itself, and is one of the reasons retirement is in the well-documented list of the top ten most stressful life events, right up there with marriage, divorce, death of a loved one, financial hardship, and other similar experiences. However, even this season of vacation from duties needs to come to an end. The computer calls again, and the urge, no need, to write is coming alive again. Time now to tell the story, and tell the new ones that follow. Time now to put the season of recovery behind, and press on to what lies ahead.

Idleness is not a healthy goal or state to languish in, so now is the time to move forward and forge a new chapter, and tell the story of this adventure between the lines.

Lupus Adventures and a Hospital Covid-19 Unit: Pneumonia

It all started out on the Saturday morning before Thanksgiving in 2020. After my husband had started coming down with something we hoped wasn’t Covid-19, then we both woke up with the same cough and congestion he had experienced the previous night. We reached out to a house-call doctor. She came to the house, checked us out, and collected nasal swabs that she took to the lab that same Saturday morning. By Monday morning, her email arrived with news from the lab we were both positive for Covid-19.

The first three days were a lot like having a miserable type of flu. Fever, deep cough, loss of taste and smell, malaise, and misery.  Our asthma flared and we shared some identical rough lung symptoms of coughing and incredible internal lung pressure and heaviness. This was not our first rodeo with respiratory infections, so we were ready with plan that included a pulse oximeter, digital thermometer, acetaminophen, plenty of fluids, homemade chicken noodle soup, and as much rest as possible.

Thanks to local grocery stores offering online ordering and delivery services, we stocked up on food we could handle, like chicken noodle soup, clear liquids, and food fit for a good recovery.  However, walking into the kitchen brought a strong fear of contaminating my food supply!

Each time fixing food, gloves, a fresh disposable mask, and a clean robe were donned.  After fixing a meal, the lightweight robe went back into the dryer for a “steam sanitize” cycle, and became part to my cooking “hazmat suit.” Imagination went wild with invisible Covid “germs” everywhere!

The second half of the week brought relief and feeling better, and telecommuting resumed a couple days before Thanksgiving. It seemed like it was beatable, and that health was on an upswing. We were supposed to host the Thanksgiving dinner that week for immediate family. Instead, the turkey stayed in the freezer, and other members of our family fixed dinner and dropped it off on our front porch. We sat in the double recliner lethargically eating Thanksgiving dinner of of lap trays!

Then, over the next ten days, recovery turned backward, going downhill fast. A rising fever and seriously worsening symptoms consumed me. On Sunday night, fifteen days after getting Covid, symptoms turned to miserable and unbearable, including several wretched trips to the bathroom. Pain, nausea, coughing, fever, a blinding headache, and a strong sense of pending complete collapse overtook me. Waking my husband, we quickly decided he would have to drop me off at the hospital.

In the emergency room, triage was swift. The ER staff did everything possible to help get me stabilized. There were lung x-rays, lab tests, and they gave me the complete go over. They knew about my lupus and asthma and my daily steroid dependency (7 mg), and had my medical history from a previous visit. My ever-ready list of medications was pulled from my purse for the doctor. Eventually, the emergency room physician came back to announce my CT-Scan showed deep Covid-19 pneumonia in both lungs. Given a choice to go home or be admitted, but feeling overwhelmingly horrible, there was no way going home would work. It seemed odd they even suggested going home as an option at that point.

Searching the doctor eyes my request was, “would you please admit me? I cannot care for myself, and my husband is too sick to take care of me!” Was there really a choice? My husband was still struggling to get better, and was very worried my health would continue worsening.  We had just lost his mother to Covid-19 with a cytokine storm destroying her organs a couple of months earlier, so the potential risk seemed all too real.

The ER doctor admitted me, explaining it would probably be for just a couple of days until my symptoms stabilized. That was late on a Sunday night. It was not until Friday morning that it became possible to start dictating this article into my phone from my hospital bed. (Just now, this is finally being published!) During the week in-between there was a whole lot of sickness going on!

The first couple of days were incredibly difficult one of the most unbearable in my memory. A blinding headache was untouched by my normal pain medication (Tramadol) and overwhelmed me for two sleepless days and nights.  Coping with the intense pain and discomfort came only through prayer. God’s comfort and presence could carry me through this excruciating pain, and he answered by giving me a strong sense of His immediate presence and protection comforting me.  This situation was well beyond my control, but not beyond God’s ability to loan me His strength to endure a few otherwise unbearable days.  Clinging to God’s throne of grace, He gave abundant mercy by supplying my lack in a helpless and difficult time of need.

Waiting to see what the next day would hold, my determination was to trust the Lord that he knew what was best for me, even with worsening Covid.  Lupus was not a choice, nor was getting Covid. There was nothing within my power to change that fact. After months of doing everything possible to care for my lupus while dodging the coronavirus, it seemed inevitable that at some point Covid would catch me. But even in my Covid illness, there was still a great cause for gratefulness that my Covid came a full nine months into the horrible pandemic. Rather than getting sick with it at the beginning, it was much better to be sick after the medical community found standards of treatment and knew enough to improve the outcomes for hospitalized patients.

A Good Night’s Sleep

In the middle of my stay, the talk of sending me home was started. But, waking the next morning with a new fever of 101 and worsening breathing problems, that quickly changed. The Covid and pneumonia were suddenly getting worse. This was somewhat ironic, since for the first time since being admitted, my sleep that night had been deep, refreshing, and lasted a full eight hours! But, also waking with brain fog and malaise, my assumption was that Lupus was was beginning to stir into activity and might show itself in the mix with Covid.

So, there were going to be a few more days in the hospital. The treatment provided by the nurses and doctors in the Covid unit was compassionate and caring. The remainder of my stay became more bearable, and soon it was obvious improvement was underway.

This was just the beginning of a long-hauler experience post Covid! Covid-19 and Lupus were waiting to join forces in the coming weeks, and the virus was not nearly done with me yet! The weeks and months that followed eventually redirected the course of my health and career and prompted some major life decisions.

Just now, two years later, after many partially drafted but never published posts, “the rest of the story” is long overdue.

Lupus and Telecommuting in a Soft Spring Breeze

It began shortly after hanging my new calendar.  Just after the holidays, we were filled with the spirit of new beginnings and rearranged our home office.  My husband and I did not know it would soon become my “new normal” workplace.  For several years, ever since the great recession of 2008, my workplace has closed down one day each week to save on utility expenses.  As a result, most employees work a 4-10s schedule now, starting at 7:00 a.m. Mondays through Thursdays.

With Lupus, mornings were already an incredible challenge, so the idea of 10-hour days starting that early was unthinkable, especially since the CNS involvement of my lupus is most symptomatic in the early mornings.  Always grateful for the incredible support of my employer,  the accommodation of staying with a 5-8s schedule and telecommute on Fridays was worked out.   About half the employees in our local government law department had been working from home on Fridays for years.

In recent weeks (that have turned into months) every day is now a telecommute day.  When offices shut down almost entirely in mid March, a good number of our employees stayed home, or took turns working to cover the most essential functions of our office.

Right now, the role of the role of the general counsel attorneys to local government is especially important.  They advise elected and appointed officials as they make legal and thoughtful choices that have profound impacts on their organizations, employees, and citizens.  Even now, many employees are returning to work after some initial fears and waiting periods have passed.  However, our state is not yet out of the woods, nor have we seen the end of our community escalation of COVID-19.

So, this is my workplace, at the desk in my home office, telecommuting eight or more hours each day.  I have successfully participated in some phone and teleconferences with co-workers and peers in other legal offices, and have attended webinars to obtain required legal certification education credits.

This year, there are no legal conferences to attend, or travel to visit friends and family.  It is a great endeavor just to brave the pathogens in the local Walmart or Walgreens Pharmacy every couple of weeks, to pick up essential groceries or medications.  These outings have me wearing a cloth mask, and returning home to change clothes and shower as an extra precaution.  As the pandemic got worse, the groceries were ordered online from Costco or Fry’s and delivered or picked up curb side.

The higher risk that COVID-19 presents to people with compromised immune systems is something to take seriously and soberly.  Those of us with additional chronic health issues are at even higher risk, as are those in the 65+ age group.  With Lupus, Asthma, and being well into my 6th decade of life, these risks are not taken lightly.  Yet, I will trust God’s borrowed strength and presence in my life are enough to face this challenge.

Still, more important reminders surface to resist the temptations to be afraid.  While appropriate caution is in order, so is an optimistic outlook!  Doing all the things that the government and medical experts suggest, I can only trust that the outcome will be okay.  If I were prone to folly, and were to throw caution to the wind to my own detriment, then perhaps I should be afraid.  But, there is no cause for undue fear.

Instead, while striving to find the pluses in the new normal, the view outside refreshes me.  A blooming yard of purple, pink, and yellow, and the song of birds and buzzing of bees in the garden nearby were my coworkers.  Sounds of rustling leaves were their accompaniment.  Our spring was especially long and beautiful, becoming our welcome office guest.

We enjoyed a delayed Arizona summer and spent a little more time outside.  This meant coffee breaks in the garden, sometimes with a mug in one hand and a hose in the other,  sometimes sipping my first cup on the porch swing.  My participation in a couple of web conferences even took place sitting in the shade of the back patio!  A few free moments are found here and there to quench the thirsty salad greens sprouting in the garden, and often refreshed me, too.

Back again at my desk, the divide between outside and inside blurs.  For the first few months, the open window freely invited fragrant breezes into the office.  Crossing over my desk, rustling papers, toying with hair, and brushing past my cheeks, it carries subtle hints of outdoors further into the other rooms of the house.  Closing my eyes, a deep sigh of relaxation gives quiet pause and briefly interrupts the clicking rhythm of my computer keyboard.

My thoughts become prayers of gratefulness for these momentary blessings, sprinkled through recent days.  Despite the challenges of this present health emergency, there came a clear realization that so many longed-for moments of rest and peace had arrived!  They were mixed right into my everyday telecommuting work world.  There is no other memory of any time quite like this.  It is a blessing to be at home while basically healthy, Lupus notwithstanding.  This is a rare opportunity to feel good enough to savor and absorb the simple wonder moments of a beautiful spring.

Working at home has helped prevent fatigue — the two-minute commute down the hall seriously shortens my day.  My retired husband brings me coffee and lunch at my desk. Occasionally, iced-tea and coffee breaks include a hug of encouragement from him whenever most needed.  We take the time to pray together more these days, interceding often before God’s throne of grace for those we know and love who have been affected by the coronavirus.

These dearest ones include my husband’s mother and brother.  As I write this, she is back in a hospital battling still for her strength, and possibly for life itself.  She is in God’s able hands and arms.

A ring neck pheasant found sanctuary, displaced by Arizona wildfires north of Phoenix, staying a month in our yard

Recently,  the blistering Arizona heat made us shut our windows up tight and start up our air conditioners.  From Memorial Day to Labor Day we hide inside from the persistent dragon’s breath of summer, and eagerly await fall’s spring like return.  Temperatures rise well into triple digits, everything is parched and hot.  Now, our summer has finally turned to mid August, and summer’s blistering heat will soon yield to dusty monsoon and thunderstorms.  This is the harbinger of Arizona’s second spring, autumn.

We have been under isolation orders and siege for almost six months, now, while homebound due to the COVID-19 pandemic.  My cherished memory crosses my thoughts throughout my telecommute work days.  Sitting the desk, eye lids closed, I experience a vivid memory of delightful spring breezes gracing my daily business activities.  Even the moving air from an overhead fan can easily evoke this potent recollection!

I think briefly on those precious weeks of spring.  Air swirling across my face and flowing gently over my work space, as it delivered welcome touches of rest and peace.  In all the stresses of the current emergent events, recalling the simple blessings of spring lifts my burdens with a quiet joy.  I close my eyes and sigh deeply, say a quiet prayer of deep gratitude, and resume my work with a full and joyous heart.

Short List of Definative Reads about Lupus and COVID-19 Coronavirus

Where can I get reliable information about Lupus and COVID-19?  The Internet is simply swarming with articles discussing Lupus and giving incredible attention on the commonly used lupus medication Plaquenil (Hydroxychloroquine).  It can be extremely difficult right now to find definitive and accurate information about coronavirus issues that focus specifically on the needs and interests of Lupus patients.

The following is my short list of the most highly recommended and medically reliable reads discussing COVID-19 Coronavirus and issues specific to Lupus patients. 

https://www.lupus.org/resources/coronavirus-and-lupus

This is a great article, Coronavirus (COVID-19) and Lupus, curated by the Lupus Foundation of America.  It is frequently updated and has several focused sections with links to the latest reliable information and news about coronavirus issues that relate specifically to Lupus patients.

https://rheum-covid.org/

This is an important registry for autoimmune patients and their doctors who test positive for COVID-19.  The COVID-19 Global Rheumatology Alliance has two registries, one for doctors of patients with rheumatological illnesses who have positive test results for the novel coronavirus, and one for rheumatology patients with or without positive test results.

https://www.lupusresearch.org/covid-19-frequently-asked-questions/

This site by the Lupus Research Alliance provides another great source of information selected just for Lupus patients and others interested in COVID-19 and its relationship to Lupus.

 

Lupus and Getting By the Gatekeepers

Life can be measured in four-week increments by lupus patients receiving monthly Benlysta infusions.  Just four weeks and one day ago the results from my COVID-19 test came back negative, and it was possible to resume infusions after a bad case of bronchitis postponed them.  After returning to work for only two days my office closed down and many of us began daily telecommuting.  Going to work now involves a quick stop at the coffee pot and a walk through the living room to my home office.

Today was infusion day again, but now, things at the doctor’s office were different!  An email had been sent out advising patients that only shots and infusions were being done in person, and consultations all were being done by telemedicine.

The waiting room was empty except for the gatekeeping nurse by the door.  She wore a face mask, and approached me with a forehead thermometer to take my temperature — thankfully it was 98.4 degrees!  She responded as if should could see me smiling at her from behind my homemade purple floral mask.  After passing this hurdle, permission was granted to cross the room to check in.

All of the other office staff at the front desk and in the infusion department wore face masks.  As their last infusion of the day, it was easy to achieve optimum social distancing in a room full of mostly empty infusion chairs, where a single patient sat across the room from me.   Another temperature was taken, and then the infusion was started.  Some text messages with my boss and some time spent reading news on a tablet computer helped passed the infusion time quietly and quickly.

To achieve an economy of effort and public exposure, today’s planned outing also included a trip to the grocery store.  After leaving the doctor’s office, I stopped for gas for my thirsty car, slathered hand sanitizer on my hands, debit card, and key fob.  Once decontamination rituals were complete, it was time to head to the grocery store.

Shopping has always been a germ dodging affair for those of us who seem able to see the invisible.  We clearly see the pathogens in our mind’s eye on every high touch surface, while most of the world walks by them in blind, ignorant bliss.  While driving, the thought emerged that the whole world has suddenly developed keen microbial sight also, seeing germs and viruses everywhere.  Those that once thought me a “germaphobe” now have the deepest respect for the invisible threat lurking on every shopping cart and door handle.

The grocery store had gatekeepers also, and a sign at the door that said “maximum occupancy 100”.  A young woman in a face mask greeted me at the door, and two young men were stationed inside the door using sanitizing wipes on a shopping cart before handing it to me.  It must have just been habit, but my hand reached out and grabbed a couple of wipes from the dispenser while passing it.  Once done, the compulsion to re-wipe the handle and front of the cart again was irresistible.

After finding almost everything that was on the shopping list, it was time to check out.  Near the registers, there were lines painted on the floor six feet apart, and at the register, there was a plastic shield erected between me and the cashier.  There was no purse on my shoulder, I had left that in the trunk.  All that was in my pockets was a cell phone, debit card, and car key.  After loading my groceries, a generous blob of hand sanitizer was slathered on hands, debit card, and key fob once again.

Then it was time to head for home, where there would be no gatekeepers.

 

Lupus and Longing for a Normal Life

Whatever normal is, it is not this!

Today was somewhat like yesterday, and but this month is certainly not starting out like last month did! After over six weeks of working mostly from home as a telecommuter, I am finally starting to get the knack of connecting with support staff and colleagues who are not down the hall from me. We have rediscovered the original purpose for telephones – conversation. But, it does not seem quite right to call this the new normal. Something in me just refuses to accept the idea of living in this state of isolation and social distancing forever! Perhaps it is more aptly described as longing for normal. Whatever normal is, it is not this!

The only office mates around our water cooler are my husband, often seated at his desk facing me from the other side of our home office, and a couple of twelve pound furry friends. Annie, our adopted rescue dog, has house privileges, unlike her dearest friend “Porch Cat” who adopted the three of us, perhaps because we came with a large back porch, an attractive patch of grass, and a few tempting flower beds. The cat unfortunately never learned house manners and is forever banished to the yard. He would likely wreck havoc on our leather couches and rugs. The four of us are quite a rag-tag workforce!

Normally, at this time of year I would begin conversations with co-workers at my office about their upcoming annual performance reviews, discuss their new goals for the upcoming year, and spend some time listening to their new ideas and suggestions. But, right now, no one wants to be that close to anyone else. It is hard to have a meaningful heart to heart conversation across a six-foot divide.

Perhaps instead, Annie and Porch Cat would like to have their canine and feline performance evaluated for determining their merit pay increases. Would they be more playful and fulfilled if they received an extra half-ounce of dog or cat chow daily in recognition of their essential contributions to the team?

But, I would have to guard against any demonstration of favoritism, remembering to give equal chow for equal work!

Whatever normal was, will it ever be like that again?

It has almost been a month since my negative COVID-19 test, the results received after recovering from a rough bout of mid-February bronchitis, and just in time for approval to go ahead with my March Benlysta infusion. I cannot remember spending this many days in my home, except after the birth of each of my children. There is much uncertainty, and I hear a common thread in the voices of my employees: fear of an unknown future.

Some events are like a plumb line or reference point running through the experience of everyone in a culture. For us in the U.S. who remember the early 1960s, we think back to answer the question, “Where were you when you heard that JFK (President, John F. Kennedy) was shot?” Although I was only five, I remember standing in my mother’s living room as she and other mothers from the neighborhood watched television and cried together. The other event is 911. My children and I stood dumbfounded that morning as we watched the news coverage of an airplane, and then a second fly into the New York twin towers. That moment we saw the towers collapse evoked emotions I will never forget, and hope to never experience again.

Yet, this will be all of that and perhaps much more. We will remember those we know who were infected with the novel coronavirus, and perhaps those who lost their lives to it. We will remember words forever that had not place in our vocabulary just eight short weeks ago, “social distancing.” We will remember how a booming economy shuddered and quaked as the world was swiftly overtaken by a pandemic unlike anything in our collective memories. This is the stuff novels and movies are written about, but not anything we ever thought would become a real experience in our own daily lives. There will be normal again, we can be sure of that, but it will not be the same normal as before. As a people, we are never the same after this type of shared profound experience.

Whatever this not-normal is, can it be good somehow?

So, what are we to do in the meantime? We have some choices, and how we navigate them will perhaps shape how this experience changes us. Some things we cannot control, and yet there are some things that we have a great deal of say about. We cannot choose all the experiences and trials that come into our lives, but we can make choices about our response to them. We may all sense our mortality in new ways, and perhaps a new humility from facing our lack of control of this disease.

Some of us are doubly at risk – immune compromised by lupus or other auto-immune diseases and also as risk because of respiratory conditions like asthma. For us, there is a greater threat from this life-threatening and insidious pathogen. But, should we live ever in fear of it? Maintain a very healthy respect for what it can do to me? Yes! Spend every day dwelling on fear? No way! But, taking every precaution to prevent becoming its victim demonstrates wisdom.

What to do then, with the temptation to fear? Dwell on the great love of God for you, and choose to trust Him. “In this was manifested the love of God toward us, because that God sent his only begotten Son into the world, that we might live through him.” I Jn. 4:9 “There is no fear in love; but perfect love casteth out fear: because fear hath torment. 1 Jn 4:18a

This trial we face, however difficult and overwhelming it may be, may have some positive effects in relationships with others and with God. When we realize we are not in control of events in our lives, we have the opportunity to remember that God is still in control. This is a humbling, vulnerable place, but God is there in the midst of every trial, protecting and leading the way through it.

In my life there have been three times that the moment of possible death blocked my path. In each of those moments, the soberness of mortality and the awareness of God’s presence consumed me. My heart’s cry echoed the words of Job, ” though He slay me, yet will I trust Him.” Each time, God delivered me, but I had no control of the outcome. That was up to God! My choice now is to trust in God, regardless the threat of COVID-19. I will strive to let this mindset of faith and trust be the substance of my normal life.

Lupus and Living Gratefully – Coronavirus Social Yet Not Spiritual Distancing

Unexpected arrivals can interrupt our game plan, but sometimes are blessings in disguise.  When bronchitis suddenly showed up aggressively and urgently during a mid-February 30-minute drive home from a morning appointment, the urgency of symptom onset caused an in-auto (hands free) phone call to arrange a same-day doctor visit on the way home.  Diagnosed with bronchitis and a sinus infection, the next stop was medications at the pharmacy, followed by a week in bed, and then two more weeks quarantine.

In retrospect, my perspective on the experience is simply gratefulness!  Just as the Coronavirus (COVID-19) epidemic was erupting outside of China, I was watching world events while home sick in bed for the 10 days.  Finally improving after two prescriptions of Azithromycin, Cephalexin, and extra prednisone, the next few weeks were spent in self-imposed and work-imposed quarantine.

Symptoms were exactly the same as the coronavirus, but there were no tests for it available until mid-March.  I was the first Coronavirus test performed in my doctor’s office, and after three days wait, my doctor contacted me with the negative test results.  The negative COVID-19 test made me welcome to return to the workplace, and able to receive a postponed Benlysta infusion the following day.  Back in the office for two days before the President, Governor, and Mayor declared a public health emergency and asked for social distancing, by the third day, telecommuting resumed again for the rest of the week.

The at-home work allowed for less physical exertion than normal, permitting my already taxed lungs to fully recover from an asthma flare that had followed bronchitis.  The normal daily commute and long work hours might have delayed a full recovery, so the extra time and rest were a welcome advantage of working remotely.  Then, for one week, it was my turn to be part of the skeletal on-premises workforce, with great social distancing in place.  Offices were cleaned and almost sterile, and appropriate sanitizing efforts continue.

While my immediate office normally houses about twenty employees, that first week there were never more than three of us in the office at any time.  While productive with few distractions, the office felt a little too quiet for my liking.  Once again, next week began the full resumption of telecommuting until the spiking Coronavirus (COVID-19) cases increases would start to level out.  Like other immune-compromised patients, my plan is to stay away from others as much as possible for now, and then for as long as appropriate to my health situation.  Yet, there is no room for fear or panic in my prescription, only wisdom, prudence, prayer for our President and country, and a big dose of trust in God.

This is a challenging adventure ahead for all of us, and a time for us to draw on resourcefulness and faith.  My husband attended a live-stream production of our church services, only because my husband was scheduled to sing a solo during the service.  We sat (six feet apart from others) in an empty church along with the pianist and church staff — spread out in a handful of seats across the front of the sanctuary.  Other church members were watching on computers, televisions, and cell phones as a sermon, music, and prayer were offered in this unusual worship format.

It was a special blessing to be able to be in the house of the Lord, that day in March.  Now that my church has started having services with social distancing, my rheumatologist’s orders are to stay away from the office and congregate places such as my church.  Since March, I have continued attending services online, and miss the fellowship of the other members.  However, I am very grateful for the encouragement of the sermons, music and being able to participate in some way.  Still, Sundays remain the Lord’s day, and I can join others in worship and say, “This is the day which the Lord hath made; we will rejoice and be glad in it.” Psalm 118:24 KJV

Lupus, Laughter, and Loving Support

Valentine’s Day was a telecommute Friday, at the end of an odd week.  Mid-week saw a couple of days diverted due to a sudden respiratory infection, but after seeing the doctor and taking some antibiotics, all was much better.

The house whispered soothingly throughout a productive day.  Alone with my tea and laptop the hours passed computing quietly about business issues and communicating to other colleagues working remotely.  My chair was enveloped in warm indirect light streaming through a living room window.  My winsome little dog curled up on the rug next to my feet, as the melody of windchimes sang peacefully in the breezy yard just outside.

As twilight began to fill the yard, the timers in several flameless candles lit in the living room and dining room.  As I finished a last email to my boss, my husband arrived with gifts — flowers, a jar of red vines, a big bag of popcorn, iced valentine cookies, and a couple of pizzas.  We had decided a cozy night at home would be an ideal way to share our evening.

Dinner and a movie included a favorite comedy film about a young woman who lost her ability to form short term memories after a serious head injury.  My situation was all too similar to the gal in the movie.  We chatted and laughed about how bad my lupus had been many years ago, before treatment with Rituxan and Benlysta.  Those were the dark days, by comparison.  But, at the time they didn’t seem as bad as they seem now, in retrospect and in comparison to the incredibly improved state of my health and mental recovery today.

Each time we have watched this film, it has triggered a comparison of me and the girl in the movie, and how my lupus had changed for better or worse since the last time we watched it.  This night we reflected gratefully on the realization that my mind and cognitive function is currently better than any time we can remember over the last thirty years.  Although morning brain fog and some other aspects of lupus are ever-present, my cognitive acuity is the best is has ever been.

He remarked how my growing piano skills are also continuing to improve, and pondered how persistent piano training over the last dozen years has helped establish new neural pathways around the CNS damage caused by lupus.  We are grateful for the changes, and have never ceased to pray for God’s help with this uphill battle to regain what lupus had temporarily stolen.  We laughed at the movie, we laughed about the joy of our nearly forty years of being in love, and we laughed about the joy of seeing a recovery we had once thought could never be achieved.

Counting our blessings, we finished off the movie with popcorn, red vines, and cola.  Tossing an occasional piece of popcorn to little Annie dog, we enjoyed a quiet lovely evening filled with talk of lupus, laughter, and loving support.

Without my husband’s support through the bad times we might never have made it to this good time in our lives.

Lupus and Choosing the Victimless Life Despite Physical Scars

Victimless life

Perhaps some conclusions about the issue of victim-hood can apply to Lupus.  In our society today, there is constant conversation about people who are victims.  While addressing vast socioeconomic issues in contemporary public debate would be daunting, discussing the possibility and options to a victim mindset in chronic illness, such as Lupus, is a worthy effory.

Those of us with Lupus do not want to have it.  The idea of being a victim of lupus seems like it might be a personal choice, not an inevitable consequence of Lupus.  Being a victim of a physical flaw, injury or health problem could be based on the reaction to the situation, and not a foregone conclusion of it.

Getting hurt or having a disease, no, this is not a choice we can make.  But, becoming a victim of the injury or illness, yes, this is definitely up to us.  No one can make a person remain a victim.  While we might be temporarily overwhelmed by a situation that we cannot prevent, we can still choose to reject the whole crippling idea of remaining in a state of victimhood!  Is there another alternative?  Yes!

How can a person prevent being a victim?  First lets consider some personal non-lupus examples .

Disfigurement

Born with a minor birth defect that caused a two-inch round hole in the skin of my little thigh, there was a large permanent scar above my knee.  Growing up in the 1960’s, in the day of mini skirts, the scar presented an emotional challenge dealing with a visible large puffy red scar.  As a baby, my mother took me to a plastic surgeon who repeatedly burned the inside of the hole with dry ice, and eventually layers of scar tissue developed and covered the muscles and inner tissues.

Although stories were told by my mother about how painful the treatment seemed, there is no conscious memory of it.  However, blood curdling baby screams during the procedures shook my mother so much that she could not bear it and canceled the final appointment.  Nonetheless, the dermatology treatments were a complete success.

The scar remains until today, but is not bothersome at all.  There is no sense of self-conscious about it, even though was and still is quite noticeable.  Fortunately, time has faded and diminished awareness of it, and it seems all but invisible.  A Mother’s gently applied wisdom helped the visible mar from causing any sense of insecurity or unattractiveness.

I wore dresses, shorts, swim suits, and gymnastics leotards without much concern for the large scar on my thigh.  As natural as it is for every young girl to be sensitive about their appearance and imperfections, and even insecure, this flaw did not make me feel insecure or damaged.  I just saw it a part of imperfect “me.”

My playmates asked about it when the saw the large red egg-shaped bump on my lower thigh, but over the years, it eventually bothered me very little.  Why?  Because my mother taught me from very early childhood to accept this imperfection with grace and confidence.  She taught me never to view myself as a victim.

She was an amazing life coach and teacher.  She was an profound blessing to me and an incredible mother.  I was not emotionally scarred, nor did I feel like a victim of this small disfigurement.  Instead, it was a character strengthening physical flaw.

Perhaps, a faint subconscious memory from my infancy of the tissue-building burns even prepared me for coping with today’s gnawing persistent pain of lupus arthritis and neuropathy.  Perhaps this early experience with a scar prepared me for facing life’s adventures with a non-victim attitude.

When the positives do not seem to exist, victors must create them, dig deep and find them, and push hard to make them add up.  Pray to the God of heaven to help you look up to Him for saving faith, help and strength, instead of hanging your head in defeat.

Being a victim is passive, embracing victory says, “lupus is not everything, lupus is only one thing.”  In the face of the pain or imperfection, victory shouts instead, “by God’s grace I will not be undone!”