One Patient's Positive Perspectives

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.

 

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.

 

Whatever normal is, it is not this!

CoronavirusToday 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!

A__F95F (2)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.

Empty Office Chair and DeskPerhaps 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?

benlysta box and bottleIt 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.

6119A821-6291-4B3C-A026-5CAD52CC7BBC_mw1024_n_sSome 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?

http://www.calumo.com/blog/wp-content/uploads/2012/10/forgot.png

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.

Holding Glasses over Bible

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.

bf butterfly on aquaIn 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.

doctor talking to patient - handsUnexpected 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.

http://www.google.com/imgres?hl=en&newwindow=1&tbo=d&tbm=isch&tbnid=xDfp0e2imexYqM:&imgrefurl=http://maybeitsmallory.blogspot.com/2011/06/oh-prednisone.html&docid=lQfZFZZ60UEKKM&imgurl=http://3.bp.blogspot.com/-pNrWWmQbXMI/Te7mz31U84I/AAAAAAAAAOo/IbQe-f2Vr2k/s1600/prednisone-02.jpg&w=500&h=332&ei=VjyfUN-aKonIiwLp7YHIDg&zoom=1&iact=rc&dur=292&sig=110339196146817075919&page=2&tbnh=140&tbnw=212&start=24&ndsp=33&ved=1t:429,r:5,s:20,i:220&tx=132&ty=82&biw=1600&bih=646

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.

CoronavirusSymptoms 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.

computer coffee mugThe 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.

Bible in HandsThis 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

butterfly29Valentine’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.

cafepino pizza

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.

brain x-ray image

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.

CNS lupus, butterflies and a minor milestone piano performanceCounting 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.

Victimless life

five year old feet

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

WP_20170912_11_19_20_ProBorn 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.

MomShe 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!”

Series: Lupus in a Victimless Life

Butterfly on yellow daisy

This is the second discussion in a series about being a Lupus patient or someone with any chronic illness, without becoming a victim.  Society tells us we are victims of the things that make life difficult, but do we really need to see ourselves that way?  No, not even for a minute!

Having Lupus should not mean being victim or powerless against it.  Although we cannot choose whether we have Lupus, determining not to be its victim is matter of mindset and even a choice.  When special events or activities in our life disrupt our normal routines and schedules, it becomes very important to be on guard for signs of physical or other stress.  Stress or fatigue may signal increased risk of bringing on a flare of lupus symptoms.

WP_20180502_18_45_00_ProA recent trip to attend a business conference was an excellent example of this type of self-management that often minimizes the impact of potential lupus flares.  Recently joining about 1,000 peers from all over the nation at an educational conference in Washington, D.C., we gathered at a large resort on the Potomac River for five days of classes and continuing legal management education.  With breakfast starting very early, and classes going all day long, by sunset, everyone was tired.  There were many extra steps going to and fro from class to class, and every situation and conversation was a new experience.  This type of event interacting with countless people and ideas easily causes both physical and emotional fatigue.  This conference was no exception.

Hands Holding Book ReadingSelecting how to best spend the free time in the evenings included a wide array of choices, from dining with old and new found friends to taking shopping trips, going on walks, taking in local entertainment.  The conservative choice was spending the night quietly in a hotel room reading a book or eating a takeout meal, while resting with feet propped on a pillow.  Predictably, most evenings were spent pursuing a sedentary evening that helped prevent over-exertion, while also promoting restoration necessary before the next day’s demanding schedule.  Wisdom is listening to the physical needs of your body, and recognizing without angst that lupus narrows those limits.  It seemed the best idea was the wise one.

WP_20180503_20_03_18_ProBut, of course, a little fun, within physical limits was necessary!  One night, opting to accept the invitation to take a sunset walk with attendees from our local chapter sounded fun!  Midway through our jaunt, it suddenly seemed best to sit and rest midway while the others in our group explored shops at the bottom of a long, long flight of steps heading down toward the shore.  At complete peace with self and lupus limitations, skipping the stairs was an instant no-brainer.  Besides, it was a great opportunity to do some great people-watching.  When everyone else reached the top of the stairway again and reunited our group, we finished the second half of our twilight stroll through the remaining street level shops near our hotel.  The activity was pleasantly enough, without being too much.

Despite the Limitations of Lupus

LA Blog Wordle 2013The onset of Lupus clearly changes a person’s life, sometimes very dramatically.  Whether their presenting symptoms are arthritis, rashes, or perhaps a more serious aspect of Lupus, their life definitely changes.  Often, many lupus patients experience fatigue, pain, and other symptoms long before they ever receive the diagnosis.

After learning that Lupus is the cause of their medical problems, a person often has a great sense of relief, as well as hope that things will improve.  The average patient experiences Lupus symptoms four to six years and sees up to the same number of doctors before getting a clear diagnosis of Lupus.  Many describe the great sense of relief they feel after finally getting a one word diagnosis to describe their collection of multiple medical symptoms.

Doctor with clipboard 2With the diagnosis comes the welcome change of a decisive treatment plan and prescriptions for well-established treatments to help control the lupus.  Often the counsel from doctors and other knowledgeable counselors encourage changes in lifestyle and attentiveness to recognizing physical limitations.  Each lupus patient has their own unique set of symptoms and circumstances influencing their quality of life, despite lupus.  In the same patient, flares of their Lupus may suddenly narrow those limitations and frustrate their life goals and plans.

Over work or inadequate rest can quickly bring on extreme fatigue and lupus flare, so it is critical to learn to perceive physical, psychological, and spiritual signs of weariness, and then to take quick actions to retract the limits temporarily to quash or prevent an oncoming flare of lupus.  For many patients, the onset of extreme fatigue is the first symptom as a flare is starting, so becoming intentional about managing social commitments and activity in balance with physical stamina can go a long, long way to minimizing the length and severity of flares, when they do occur (and they will!).

doctor talking with patientLiving within the limits of Lupus may involve a strict regimen of medications, laboratory tests, and medical appointments, along with costs that that restrict a household budget.  Moderate physical exercise can help increase the physical limitations by encouraging good circulation and promoting tissue health and repair.  Adequate sleep becomes invaluable in fighting many of the affects of lupus, and can diminish some of the morning mental clouding that many patients experience daily.  Communicating with the rheumatologist becomes very important if arthritis or neuropathy pain disrupts sleep, and being willing to ask for and take pain medications can be essential to fighting the negative effects of lupus.

bf resting on benchAll in all, we can choose to make the most of what we have, despite lupus, and accept that lupus may make our life and limitations different than others.  Take a the time to you need to slow down, without letting this need frustrate you.  In the stillness of those quieter moments, focus on the blessings around you, and determine to embrace your limitations rather than becoming a victim of them.  Perhaps consider these thoughts penned by Paul of Tarsus, who also had a life-long chronic illness but embraced the ideas that his weaknesses and limitations were a blessing.  He wished his illness would go away, but he was no victim!

stock-photo-woman-reading-the-bible-in-the-darkness-over-wooden-table-277354922“For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.” 2 Corinthians 12:7-10, KJV

 

 

 

Series: Lupus in a Victimless Life

Having Lupus does not mean being a victim! Because Lupus is only one thing in an otherwise amazing life, it does not need to define us.  In the government law office where I work, we have a professional victim advocate who helps crime victims asset their rights through criminal court case against the person who hurt them.  One thing common to most victims is that they view themselves as victims, and often perceive themselves as powerless against the victimizer.

By looking at several aspects of lupus, this series will attempt to offer some ideas that may help with the effort to move away from a victim mentality, and toward a more positive perspective.  There is no question we cannot choose to have Lupus, but in some ways, we might even find some reasons to see some positives associated with Lupus!

First, consider the idea that becoming a victim is at least, in part, a matter of mindset and even a choice.

Despite the Lupus Diagnosis – an Overly Defensive Immune System

There is no cure for Lupus.  The treatment for Lupus has greatly improved over the past couple of decades, and especially since the new biologic medications such as Benlysta (Belimumab).

However at ease we become with the fact of our Lupus diagnosis, it remains an unwelcome companion traveling along with us in our life adventure.  Does that mean I should view myself as a victim?  No way!  There is a better way to view Lupus.

One afternoon, while sharing the podium and waiting to speak at a Lupus Foundation of America patient symposium, one of the world’s leading medical experts on lupus explained something very profound.   Her explanation provided a radically new perspective on Lupus.  A few minutes later, she explained the same concept to the room full of people.

She spoke about the most recent medical research that had produced a new understanding.   Lupus does not actually attack a Lupus patient, it actually overprotects them!

She went on to explain that immune systems can adapt and attack new and changing pathogens.  This is a testament to the fact that some people will always have auto immunity.  This capacity of the body to create antibodies against itself comes from the same aspect of our autoimmune system that can fight off new variants of viruses and bacteria.

Without the human body’s ability to develop new immune defenses, the human race would become extinct.  We owe our continued existence as a species to the fact that our immune systems, with their imperfections, can respond to either defend us against new threats, or unfortunately, become confused and try to overly defend us against our own cells mistakenly identified as threats.

This over-defensive response results in a wide array of auto-immune conditions, including Lupus.  She explained that this new information helped researchers understand why a certain segment of the population will certainly develop auto-immune responses.http://www.calumo.com/blog/wp-content/uploads/2012/10/forgot.png

After hearing this explanation, my view on the “why” of lupus radically changed.  Lupus is not really attacking me, Lupus is really my flawed immune system working overtime defending me against an imagined threat.  It is demonstrating what friend of mine describes as “being exceedingly helpful” to a fault.

It seems that every lupus patient is actually a living testament to the kindness and protective grace of God.  Because imperfect humans have dynamic changing immune systems, the human race is kept alive.   If not for this ability, each newly mutated germ could wipe out millions of people.   But, due to the same immune processes that cause Lupus, the human race continues to fight new germs and virus mutations as they arise, and therefore survives.

So, instead of seeing myself as a victim of Lupus, I see myself as overprotected by a misdirected, well-meaning immune system.  With Lupus and its known negatives, we still have defense against the microscopic threats that would otherwise kill us off.  So, accepting the downside of Lupus goes along with accepting the upside of a flawed, overactive, but still amazingly effective immune system.

By remembering that 99.9% of my body works properly, it is possible to choose to rejoice about everything else that still works, while acknowledging and accepting the imperfections of having Lupus.

 

Feeling Twice as Good as at Half My Age

valentines-day-love-heart-romantic-heart-butterflyDecades of unexplained symptoms finally resulted in a lupus diagnosis.  What a relief to finally know what to call it, and how to treat it.  At half my age, looking toward the future was a little uncertain and even threatening.  Thirty years ago, many people told me the outdated idea that after diagnosis life expectancy was about 10 years.  At first, it seemed this could mean disability, no cure, and an early death.  This was a scary set of thoughts for a young wife and mother of two small children!

computer coffee mugThe Internet was still mostly in academic circles, and in its infancy.  Although in a few years the “information highway” would take off and become the Internet as we know it today.  Before that, reliable medical information could be researched using dial-up using phone land lines and a modem.

This type of research service was expensive, paid for by hourly credit card charges, and “normal” people could only go to a large university or law library to use it.  Early career experience as a paralegal working on medical malpractice and injury cases exposed me to the online medical information service.  At the time, most people did not have computers at home, and mostly only doctors and lawyers had access to expensive legal and medical research databases.

medical books and stethascopeSo, doing research about my initial diagnosis: “abnormal high anti-nuclear antibodies” and “lupus-like polyarthritis” required a trip to a nearby county law library.  After pouring for hours through massive search results for these terms, some recurring facts emerged.  The search engines as we know them today did not yet exist.  By reading through medical articles, the out-of-date online information was slowly pieced together to explain what ANA was, and what a lupus diagnosis might mean.  These old research databases were not very encouraging, and the picture they offered for the future was discouraging.

Medical treatments and phases of lupus life

Wordle Word Cloud for Lupus Adventure Between the LinesMoving along through the second half of life since then was a rewarding adventure, full of increased knowledge, improved treatments, and vastly improved health.  The journey has had a good number of bumps along the way, but over the long haul the outcome has been so much better than was ever expected!  Moving from the initial partial diagnosis to a full systemic lupus diagnosis added certainty to the nature of the challenge.  Doctors had a clearer focus on treatments to use, and were able to tap into clinical trials and new medications to manage the lupus.

An important part of the partnership between doctor and patient has always included willingness to comply with new approaches that were presented.  Using chemotherapy drugs was tried for about ten years, and then it was time for a change.  An insightful general practice physician asked if the rheumatologist had “thought about trying one of the new biologics” to manage difficult symptoms.  This idea led to a clinical trial that triggered a several year remission, and later opened the path for Benlsyta when lupus  symptoms came back with a vengeance.

Milestone yellow11_02Like for so many other lupus patient, the years of the journey are inevitably marked with mental milestones of major life events, periods of major lupus activity, and new medicines!

First, were the pre-diagnosis years of rashes and pain, followed by many mildly bumpy Plaquenil years.

Then, there was the year to end all years of mourning my mother and developing organ involvement, including CNS problems.  This began the difficult decade of Methotrexate and Imuran.

Next, were the amazing Rituxan clinical trial remission years, followed briefly by a miserable year striving with insurance appeals while hoping for approval of more Rituxan.

youth-active-jump-happy-40815.jpegThis takes us to the current Benlysta years.  This has to be the best decade  since childhood, and perhaps even better than childhood, when lupus symptoms first began their intrusion into a young girl’s life.

Feeling twice as good!

Then came the present realization that sixty feels better than thirty ever did!  It is a true blessing to feel twice as good as I did at half my age!  Now, the future looks better than it ever has before.

At sixty, it is great to feel twice as good as at thirty! Thirty years ago, it never seemed possible that now would be better, not worse, that it was then.  For this small miracle I thank the Lord daily.  My cup is full of joy!

 

 

Empty Office Chair and Desk
Working with Lupus challenges every patient because it impacts the activities of daily living needed for holding a job or career.  At times, it can be downright difficult to work with lupus, when even getting up in the morning is rough.  Thanks in part to the important protections the Americans with Disabilities Act and the Family Medical Leave Act provide to U.S. citizens, it is not impossible.

FMLA from DOL

Recently, we held a meeting at work for the annual discussion of my ADA accommodations.  To prepare for my employer’s annual recertification process, some work was required before the next quarterly appointment with my rheumatologist.

Forms for requesting an ADA accommodation were downloaded from my employer’s Human Resources web site, along with an FLMA Certification form.  The paperwork included a document for my signature permitting my doctor to share my private medical information with the HR department at work.  Because this was not the first year, the prior year’s accommodation and FMLA forms could be used as samples for preparing this year’s forms.

FMLA ChecklistOnce the forms were ready, next came gathering backup documents to attach to the forms:

WP_20170912_11_27_53_ProI set up a meeting with my supervisors a few days before my doctor appointment, telling them about the need to recertify FMLA and update ADA.  I gave them each a copy of the forms and the attachments we would talk about at the meeting.  This helped prepare them to be ready with anything they might want to suggest for the new year’s accommodation, or have conversations with others about the impacts of my past accommodations.

It is always a great idea for an employee to take charge of initiating any ADA/FMLA process!  It helps prevent putting the employee in a defensive position, and demonstrates the employee’s professional approach to workplace challenges related to their disability.  By taking the lead in coordinating the conversation my bosses, human resources, and my doctor before the recertification deadline, it helped me be better prepared to respond to any changes they might propose.  My bosses and the Human Resources office thanked me for making this aspect of their jobs easier.

Calendar a meetingLater, when we met to talk, my bosses both expressed how well my schedule changes and other accommodations had worked out during the past year, and readily agreed with my suggested accommodations for the next year.  I asked them if there were any problems or concerns but there were none.  The meeting gave us opportunity to talk in more depth about some of my personal and work challenges and struggles due to Lupus.  It seems this helped them better understand my commitment to my work, and how willing I am to do my part to make their accommodations of my Lupus successful.  Also, my newest boss had many general questions about Lupus that were answered, raising his awareness and understanding.

Next, at the appointment with my rheumatologist, we talked about my FMLA form, the attached job description, and the attached recent performance appraisal.   This conversation was a great way for my doctor to know more about the daily challenges of my lupus, and to help her understand more about me and how I cope with Lupus and work on a daily basis.  She had gathered enough information to help her honestly evaluate my performance and the reasonableness of my request for schedule changes.

thV6NHX9CTBefore leaving, I also gave my doctor a copy of the ADA accommodation request I was going to file with the Human Resources office, so she would also be ready when they contacted her to talk about it.  It is very important to show that an employee can do the job well with the help of an accommodation, because ADA laws do not protect employees if a reasonable accommodation is not enough to help them do the essential functions of their job.  She filled out the FMLA form after the appointment and sent it to my employer’s human resources office.

A few days later we sat down for the scheduled meeting to discuss how my intermittent FMLA leave and ADA accommodations had been working out over the past year.  We agreed to continue my schedule adjustments that allow a later start to my work and the ability to use telecommuting during flares, when needed.  They also shared positive feedback with me received from my co-workers and affirmed that they knew of no negatives resulting from my schedule modifications.  This was also a great opportunity to tell them how grateful and thankful I am to have supportive bosses who believe in me and see beyond any limitations my Lupus causes.   After the meeting, the final paperwork filed with the Human Resources office documented we had meet and conferred about my accommodations, as the ADA requires them to do, and the human resources department responded by issuing their endorsement of the arrangements.

CommunicateCommunication and cooperation between employee and employer can make all the difference!  With some footwork and planning, a Lupus patient can coordinate workplace accommodations and flexibility for facing health challenges the might otherwise threaten their job.  Sometimes, in past years, my bosses have asked me to make some changes to the accommodations, and by meeting and conferring, reached workable solutions that were better for them, while also accommodating my lupus limitations.  I am grateful, and thank God frequently for the work situation that I have been blessed to enjoy, where they follow not only the letter of the ADA and FMLA law, but the spirit of it, also.

%d bloggers like this: