One Patient's Positive Perspectives

Archive for the ‘Opportunities’ Category

Lupus in a Victimless Life – Despite the Diagnosis

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.

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.



Lupus and Working with ADA and FMLA

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.


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.

Lupus Adventurers in Butterfly Wonderland

Butterfly Wonderland opened a couple of years ago in Scottsdale, Arizona!

Many experiences photographing butterflies protected in butterfly sanctuaries has been a highlight of trips to some nearby states.  For this butterfly enthusiast, such an outing is nothing short of delightful!  Now that Arizona has its own butterfly sanctuary, we recently took our five grandchildren out for an afternoon of butterfly watching and photography.  Armed with cameras and snacks, we set out for a few hours of fun.

As my granddaughters watched, one butterfly slowly closed its wings into instant camouflage, suddenly resembling a dry leaf!  We enjoyed our pleasant diversion wandering through Butterfly Wonderland, not very far from my own backyard.  It is the perfect shady oasis for a restful afternoon getaway.


LA’s Musical Background

piano lamp1

Learning to play

First, I am not the accomplished pianist my husband is.  He can just sit down and play, read pretty much any music, add notes, embellish to make it better than what is written, and think on his musical feet (or perhaps musical seat!)  As for me, first comes being a singer, then a student pianist.  Only after struggling with CNS lupus, did  learning to play the piano in earnest become incredibly important.  In the beginning it was primarily cognitive therapy and a musical test eye-hand coordination before commuting.  With slow improvement a vision for more musical purpose emerged.

Playing the piano started almost ten years ago, not long after a fiftieth birthday.  Although a handful of exceptional pianists are friends of my husband and me, personal goals include the realization not ever being in his or their league!  Still, a love for playing the piano makes it fun.  Learning is slower than might otherwise be for young student of the instrument, it will always be a work in progress.

What high and lofty musical goal is being pursue?  To be useful!  As a church musician, I see that there is always a place for any level of competent piano skills, even if just to improve my effectiveness coaching other singers and helping them learn their music.  If I am careful not to overdo it, my lupus arthritis doesn’t flare and I can play the piano without hurting my hands.

So, perhaps quitting the day job to pursue music more fully isn’t reasonable, but then again, maybe it is!  It won’t be too long before I need to cut my work stress down considerably, especially with my lupus.  I consider retiring from my current day-job in government law, collecting my hard-earned pension and doing something less stressful like teaching private voice, piano and music theory lessons to children, or perhaps work part-time as a school choir director.  Perhaps there should be a shingle hanging from my mailbox that reads, “will teach music for health insurance.”

thDOENQV8E (2)

California State University Campus

Going into college, my talents and gifts included more voice than money, so following music scholarships was the practical choice.  The first three years of college offered solid voice technique and music theory instruction by wonderful music professors in the music school of a large public university in the San Francisco Bay Area.  Then, in the fourth year followed a music performance scholarship to a private Christian college in Arizona.  This opportunity included touring the U.S. performing 8 concerts each week for three summer months.  This experience helps me realize my lack of stamina required for living as a traveling minstrel.  What a wearying lifestyle!  Realizing this hinted that there were greater physical challenges ahead that a few years later would be diagnosed as Lupus.  But, it was a life-changing and broadening experience that enriched a young singer’s life!


Arizona Campus

Music has always been part of my life, long before the Lupus diagnosis.  Long before a head-first flight through a windshield herniated three discs in my cervical spine and before lupus arthritis made finger joints balloon, it was still possible to hold a violin under my chin, bending neck to the left.  Hands still could cradle the violin neck with vibrato motion in the left hand and a bow in the right.  Now, that violin sits untouched in its case, proper in the corner by the piano.  My younger sister and her first husband were also violinists, and excelled at it.  It was their primary instrument.  The violin was always my second, and the skill with was mediocre, at best.

singing a lupus solo

Just couldn’t stop singing…

Singing was a non-stop activity from the time of my early childhood.  Apparently, there are always going to be a few of us musical misfit kids that show up in kindergarten singing their ABCs with a natural vibrato.  Thankfully for me, there was no stage door mother to go along with that phenomenon, and I was allowed to have a normal well balanced childhood!  I was the elementary school librarian’s daughter, so books and homework always came first, before the music.  But, there was always a whole lot of singing going on!

Everyone at my family liked music, was musical or sang, except my older sister.  (She was strictly an artist, but could draw and paint like no one else we had ever seen, except maybe Norman Rockwell.  Her music was played on paper and canvas.)  Our two brothers have a bit of down-to-earth music in them too, between them playing the clarinet, guitar, sitar and some mean toe-tapping harmonica.  Our dad had a smooth rich Baritone voice and loved to break into songs unexpectedly like, “Swing, Low, Sweet Chariot,” or his favorite, “The Yellow Rose of Texas,” and performed for several years in his youth with a barbershop quartet.

But, our mother absolutely loved music!  She played the piano a little, as her mother did, too, and owned some various instruments that she dabbled with, including an autoharp, balalaika, mandolin and a couple of violins.  But, when she sang to us with her sweet pure high soprano voice, we melted. Hers was not a shrill sound like so many women who desperately try to sing in the upper soprano ranges, but rather a warm milk-and-honey sort of lullaby voice with a lilt.  She sang from the happiness of her heart, without affectation or guile.  Her voice was genuine, humble and beautiful.  She could hug you with a song, and then make you feel like singing along.

Mom infected me with incurable love of music and singing.  Family describe me as singing while playing, walking to school, washing dishes, bathing (of course) and every night at the dinner table, my mom would gently repeat a special table manners rule created just for me, “we don’t sing at the table.”  This stern but musing directive would jar me from my humming world of musical bliss to the rude awakening of my green beans, meatloaf and milk.   Not being very objective about my own behavior at the age of five, it’s best to take other people’s word for it.

My Parent's Record Player

My Parent’s Old Record Player

Often sitting cross legged for hours on the hardwood floor of my parents living room, 45 rpm singles would play on an old Zenith monaural record player my parents bought in the early 1950s.  Every note was memorized, mimic each narration and singing along with the different instrumental sounds dramatizing Prokofiev’s “Peter and the Wolf.”  This was my favorite, and sometimes in the quiet I could silently “listen” from memory to the entire score, just as if the turntable on the Zenith were still spinning.  Some days, I would sing along with Julie Andrews’ songs from musicals like Mary Poppins or the Sound of Music.  By the time I was old enough to learn to read, I had already learned every note and syllable of all the 45s in our house.

My mother was an elementary school librarian, so there wasn’t a lot of television.  It was turned on for a specific program, and turned off again.  Most nights, various members of the family were practicing instruments, doing homework or reading books in one corner of the house or another.  Mostly, there was a calm peace filling our home, subdued conversations, interrupted sometimes by one of us playing records from my parent’s diverse collection of 33 rpm albums.  They had just about everything, the popular music included a little Glen Miller, Roy Rogers or Nat King Cole and the “real music” included a broader selection of symphony and chamber music including Beethoven, Tchaikovsky, Brahms, Berlioz, Bach, Mozart, Haydn, Handel, Puccini and of course, my favorite Prokofiev.

The advent of rock music seemed respected and nominally welcome at our home, and was tolerated in limited volumes and time frames, as my older siblings embraced contemporary music of the late 1960s and early 1970s.  I didn’t get much past the Beatles and Peter, Paul and Mary into the foray of rock music (if you can even call them rock by today’s standards) and was once again sort of a musical misfit, or simply put, just not “hip” in the hippie age.  I guess I never got the memo, or just forgot to read it.  I was too wrapped up in my love of the classics and by high school was studying Italian and German art songs and arias from composers like Scarlatti, Puccini and taking parts in musicals plays such as Oliver, Oklahoma, Carnival, Little Mary Sunshine and others.

San Francisco Symphony at old War Memorial Opera House on Van Buren St.

San Francisco Symphony at the old
War Memorial Opera House, Van Buren St.

Growing up, we sometimes attended the Oakland and San Francisco Symphonies with my parents, and the love of music grew.  As an adult, my music is pretty much performed only in the church setting, as a member of our church choir, as a soloist, as a duet partner with either my husband or a dear friend, in an occasional ensemble group, or playing the piano for services my church holds for seniors in independent and assisted living residences in our community.  Recently, ab opportunity to serve with playing the piano for an entire church service was a nerve-stretching challenge, and a new milestone in this personal musical ministry journey.

[I posted this a couple of days ago, by mistake, before it was finished and edited.  My apologies to those of you who received the rough, unedited version in your email.  WordPress has had some changes while I was on a writing sabbatical, which I am still learning to navigate.  Thanks!  LA]



Lupus Adventures Sojourning in the Land of Learning

My Cheering Section!

The Whole Cheering Section!

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

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

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

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

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

Senior year of high school

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

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



Returning from East Coast Lupus Adventures

thDDSVWJG3After all the fun traveling from Arizona to Philadelphia for the 2015 GSK Lupus Blogger Summit, life and reality always have their return.  The high point was stepping off the plane 10 minutes earlier than expected and calling on the cell phone to find out my husband was already almost at the airport.  It is so nice when you have those moments that remind you that the one you miss, misses you, too!  After leaving the east coast at noon it was eight when a suitcase and tired girl slipped into the pickup truck.

Hungry and tired, we stopped off at a coffee shop for comfort food, pie and a coke, did some catching up.  A friend was working last night, and waited on our table, and with the sodas, placed a fresh red carnation table in front of me with the gentle explanation, “a flower for you.”  That was sweet and a welcoming thought after a long, flight weary day.  Tummies full and spirits a little revived, we were thankful to be together and soon ready for the last five-minute trip home.

Exhaustion overtook both of us, and after a quick shower blasted away the grime of taxicabs, airports, and airplanes, sleep arrived almost instantaneously.  The night passed nearly as quickly, ending abruptly with the welcome smell of fresh coffee on the bed table beside me.  Leaning on the pile of pillows he tossed my direction from the nearby bench, eyelids drooped off to moments of sleep and husband’s chatter between sips from a warm caffeine-filled mug.

th2C28Z9N0Unlike the night, morning moved very, very slowly, matched only by slow reflexes and even slower murky disconnected thoughts.  If ever there was a day to be tempted to call in sick with my lupus after a trip, this was it.  Unlike the sweltering sauna on the east coast, the Arizona desert morning was unexpectedly crisp and refreshing.  After kissing my husband goodbye in the driveway, the second cup of coffee led me through the house into the back yard’s fresh air and fragrant rose blossoms.

Delightfully, the cool morning breeze invigorated and refreshed, as deep draughts of blustery breeze wakened a sleepy set of lungs, slapping fresh life into the lupus fogged gal walking around the yard in my slippers!  The day began to look suddenly promising and worthy of pursuit.  The refrain actually passed over astonished lips, “Oh, what a beautiful morning!”  What a blessing to be home in my back yard!

Quickly gathering all the loose ends of hair, clothing, keys and a sack lunch, every thing seemed to tumble to the floor as a startling reminder CNS lupus might be a little flared from exertion and travel.  The reality of lupus limitations has a sneaky way of keeping a gal humble.

The commute drive was executed with extra care and attention, followed by a couple of conversations at work with obvious moments of difficult enunciation.  Mild lingering CNS difficulty lasted through mid afternoon, but finally the fog burned away completely.  Eventually, the morning song continued into later afternoon with, “Oh, what a beautiful day!”


Lupus Adventures in Advocacy with Lupus Sisters

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Breakfast of Lupus Champions @TiffanyAndLupus @LAlupuslady @LeslieRott and @LupusAdventurer (taking pix)

Sharing stories and coffee we nibble and smile,
while catching a quick bite to eat.
All kindred spirits fighting for health,
if only our foe to defeat!

We strive and endeavor to get the word out
and tell anyone who will hear
Awareness of facts each person should know,
information to replace their fear.

WP_20150512_001Each of us bloggers and advocates strong,
we gather with purpose as one,
We’ll talk and discuss issues we know so well,
informally we’ve already begun.

A few minutes later we join all the rest,
in the summit we’ve come to create,
With meeting of minds, a free flow of thoughts,
and messages we each came to state.

For just a few hours, we gathered together,
a great combination of voices we were,
Relationships strengthened in this rare adventure.
If only there could be a cure!

Short of that miracle, so much can be done
through research and tireless care,
Joining perspectives and wisdom diverse
by patient advocates with personal flare!

Our voice will be different, more united and strong,
after meeting together today,
What once was just virtual has leapt into life,
after meeting in this wonderful way.

Encouraged and enthused, still striving on
to reach out to every life we can touch,
Advocating, writing, and partnering together.
Alone, we could never do as much!

Lupus Adventurer
© May 2015

Edited in Lumia Selfie

Lupus Adventurer and Sarah Gorman at GSK Lupus Summit

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Leslie Rott @LeslieRott

#GSKsummit Lupus Summit

#GSKsummit on Lupus @shanelleG @LeslieRott @LAlupuslady @LupusAdventurer @cmswrites @TiffanyAndLupus @marlajan @despitelupus

A very special thank you goes out to Glasko Smith Kline for sponsoring the May 12, 2015 GSK Summit on Lupus — #GSKsummit , and inviting  lupus bloggers to join in this precedent-setting lupus event. Note to Reader: GSK provided reimbursement for travel and expenses to attend the GSK Lupus Summit.  However, this post is voluntary, represents my own views and I was not paid to write it, nor asked to promote GSK or its medicines.

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