One Patient's Positive Perspectives

Posts tagged ‘family’

LA’s Musical Background

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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.”

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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!

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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]

 

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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.

 

Lupus and the adventure of finally finishing something

Senior year of high school

Finishing Something!

Finishing something

There is no feeling quite like setting out on an adventure to finish something that has been waiting a very long time to be completed. So it was this week. After a long thirty-four year interruption, there was finally enough health, time and money to return to college to finish a nearly-complete bachelors degree.  Thirty-four years was time enough to equal more than half of a life, filled with countless challenges and blessings.  Yet, this was the one undone endeavor that still carried a sting of lament.  After investing four years at two colleges, the final semester of college was never completed.

Over the intervening years, a lot of stuff happened!  Enough years had passed to,

  • Love a husband more than a third of a century
  • Work long enough in a career to earn a pension and start to think about retirement
  • Conquer great financial hardship and recover, and go on to own two homes
  • Face the threat of imminent death three times
  • Raise two children and watch them graduate from high school and college
  • Watch children marry and enjoy four grandchildren
  • Lose one parent suddenly and lose the other slowly to dementia

Why the long wait?

Paying medical bills

Paying medical bills

Why did it take so long to get to this point? In a couple of words, life and lupus got in the way!

Several times a target date was set and never worked out.  First, after taking a semester off college to get married, a baby [note, the pill does not always work!] was soon on the way and a prayerful decision reached that my husband needed to finish college first since we had started a family who needed nurturing.  We assumed my degree would quickly follow, as soon as toddlers went off to school.  But, when severe asthma shattered those plans my husband’s medical bills equaled enough to pay off a house (without ever having a house to show for it.)  Somehow we paid all the bills, but it took seven years, and thankfully, without declaring bankruptcy.  It was a small price to pay, and we were grateful, because the doctors saved his life!

Sober concerns about my husband’s long-term survival made him urge me to find a job that could support us right away as well prepare me financially for the very real possibility of losing him.  So, this meant going to work without finishing the degree.  Even then, Lupus was lurking around in the shadows, but still had not introduced itself properly.

As kids went to school, their dad was home, through kindergarten and several years along.  This meant my job was the sole support for the four of us for a while.  It was a great blessing to see God’s wonderful provision meeting our financial needs through my new career as a paralegal trainee, over the next three decades promoting through the law office ranks to government law office management.  Eventually breakthroughs in asthma medications stabilized his health, but by then our children were a little older and my career was well-established.

Trading places!

Photo Lupus Adventurer's Daughter-In-Law

Photo by Lupus Adventurer’s Daughter-In-Law

Then, we traded places.  lupus came out of hiding while he regained health and became the strong one.  As children turned into teenagers, lupus was in full flare with arthritis, fatigue, rashes, mouth ulcers and deep gnawing bone pain.  Many nights spent in a chair rocking back and forth was sometimes the only tolerable way to pass through those early morning watches.

Then, while grieving my mother’s death, opportunistic lupus rampaged through my body, targeting my central nervous system and muddying memory, coordination, speech and analytical thinking.  That was the year lupus moved in like an unwelcome intruder, threatening my career and nearly completely disabling me.  When abdominal artery ruptured, nearly taking my life, while our kids struggled with a mom who got confused, forgot things and was struggling to stay afloat.  When there wasn’t enough of mom to go around, there was also complete peace that husband and children were the priority that came first.  College was never even a consideration because of time and money.

Finding an open door

Two important questions

It did not make sense to put personal goals first unless it made sense to heart, budget and what mattered the most in the depths of my heart.  While wishing I could finish college, other commitments and priorities mattered far more. Character and patience required waiting until a right combination of physical health and strength, priorities and schedule, and financial resources and wisdom would (ever) add up an open door.  A final decision also required defensible answers to two important questions, especially this late in the game:

  • Would there be enough return on the investment to make spending the money a wise financial investment?
  • Would the degree contribute enough to reaching future goals to merit spending the necessary time and energy?

Regardless how long it took to get here, there are no complaints about the wait. It was always clear when God used events to deliver a very personal message that not all moms should be “stay home” moms, and not all moms are supposed to get their college degrees before their kids do!  Sometimes, God calls a few of us down a different, sometimes difficult path to help us understand His love and care through the struggles.  Now, it makes sense to spend the time and money on getting the degree completed. It will boost earning power and open up a wider arrange of choices for a meaningful semi-retirement second career.

Back on campus!

So, this week it was thrilling (and a little nerve rattling) to become a college student once again.  On-campus classes are held one night each week for the next eighteen months as part of the degree completion program. Someday husband, daughter and son — who all finished their college degrees (daughter has two) — will assemble to watch mom put on cap and gown and cross the stage to receive her diploma.  This is the time to make it happen, lupus and life not withstanding!

Catching up with lupus adventures

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Writing in the darkness of midnight

What gets put aside during grief?

Sitting down at my desk and writing seems like such a simple thing to do.  Writing has become an essential part of me. But, lately, life has been getting in the way!  Keeping up with my full-time job in a government law office, keeping house, keeping a husband fed and keeping track of all the details in my life has consumed me.  Adding the grief of losing a parent to the mix compounds the challenge and impacts of a busy life with lupus.

What continues to get pushed aside?  Writing!

So, while my husband is already tucked in for the night and emitting sonorous tenor songs of slumber, I sit alone at my desk basking in the pale light of the computer as it casts a gentle glow into the otherwise darkness of midnight.  Not really alone, I guess, since you are here reading, joining me in the written frozen moment of time.  As I write, I am thinking of you, my reader, and what I might share from the recent days or even this moment to help or perhaps encourage you.  Perhaps in these words you will find a common experience to something you are journeying through, and perhaps by me explaining my present reality, you will be strengthened.  I find it helps to understand someone else’s similar journey, to help me feel that I am not alone.

 Thinking more about mortality

Lupus in a complex lifeI find myself thinking more about my mortality, praying as I move about, talking to God about what I am thinking and feeling as I drive around in my car and move through my day.

I think about the fact that both of my parents are now gone, and that this has instantaneously made me a part of the oldest generation of my family.  Suddenly losing the first parent, my mother, was a very different grieving experience than what I find myself passing through now.  This is a loss of everything that was the idea of my parents, as the couple and team that nurtured, shaped, loved and guided me through the first half of my life.  They are my first memories, they were my source, anchor and shelter from the beginning of my being.  They loved me unconditionally, although imperfectly, and I was always one of their five precious children.

Grieving slows the pace of life

My parents loved each of their children with a unique and customized relationship, and encouraged us to find our own personal path and calling.  My siblings and I were very blessed to be their children.  Now, they are both gone, and we are here without them.  Life will move on, but not just yet.  Grieving slowed the pace of moving forward with life, causing me to pause and linger in the memory rich time of this great loss.

Now, it seems the state of being an orphan has come.  Neither  destitute nor abandoned as I am blessed as an adult to have an established life and family of my own.  An orphan, nonetheless, but not as the state of child orphans so often can be in the loss of their provider and shelter, but finding myself an orphan of the heart.  My heart misses the fellowship and love that will no longer be shared with them.  I mourn the idea of “them.”

I think mourning has stressed my health and at times causes flares of my lupus.  Yesterday was a an especially bad day, gnawing bone deep pain in my legs and arms interrupted my routines and  forced me to stop and rest.  In contrast, the day before was a great one, as I was talking about how I felt my health was on an upswing.  Today is somewhere in the middle, as I am finishing this in the morning, after a few more hours of sleep were finally captured.

Probate adventures in patience

Photo by LA's Daughter-in-Law © 2013

Photo by LA’s Daughter-in-Law © 2013

This past few weeks I have worked diligently on the probate matters for my  father’s estate.  I am the executor and have the job of marshalling his assets, paying his final bills, filing his estate taxes and distributing the proceeds of his remaining life savings.  Knowing that I will be able to sign a sizable check and mail it to each of my siblings as a last act as executor of the estate is a pleasant outcome of the loss I am still grieving.  The whole “marshalling of assets” project has become much more time-consuming and difficult than I ever imagined!

About a month after my father died, and after the probate was filed by my lawyer, the letters of appointment as Executor arrived from the court.  So, I set met with the personal banker at the bank where most of my dad’s money is held. The meeting lasted for hours, as we reviewed different CDs, accounts and broker investment details and the banker was on the phone and communicating online with their legal department in New York.  Once the process of converting accounts started, it took four more weeks to get the money moved into a new estate account. Many phone calls, emails and meetings were  required before the estate account was funded.

Paying my father’s bills

I was waiting to pay my father’s last bills to his residence facility, doctors, dentist, pharmacies, and other miscellaneous final expenses.  The smallest of these was the fee due to the on-site hair/nail salon, and this one was so impatient they kept calling and sending emails, threatening to send the bill to collections for the mere $60 owed to them!  I told the persistent woman she would need  to be patient and wait, and after each encounter would hang up the phone and sigh.

When I spoke with my lawyer about her, she and I rolled our eyes and laughed together over the absurdity of the woman’s impatience to collect such a small sum.  So, when the money finally was available, I sent out a check immediately for the balance due, including late fees, along with a thank you letter for the services they provided to my father!  I just felt compelled to choose the high road.

Lupus, loss, grief and taking time to actively mourn

Reflection
Taking time to reflect on grief

 

Keeping up with a very busy life along with having lupus is always a huge challenge, and takes planning, consideration and careful management to prevent becoming spread out too thin.  Always mindful of sudden flares, and cautiously navigating within ever-changing boundaries is part of the lupus journey and adventure.

My life is usually very full just managing family, career, lupus, music performances and my writing.  Before my dad passed away, at least four other major things were also in the mix:  participating in a local Lupus walk planning committee, some ongoing major home renovations, a couple of highly stressful and unusually challenging work projects, and participating in a Benlysta clinical trial of weekly self-injections.

These extra things meant plugging in plenty of extra goals and activities.  Honestly, I thought I could handle it all.  Adding the clinical trial recently meant more doctor appointments and follow ups, and planning my weekly injections and filling out the simple patient log.  A year ago I had signed on with my Lupus Foundation contacts to build a walk team and contact a group of local professional contacts to promote the upcoming walk.

Our home renovations have been slowly moving along, but the stress of a household in flux that adds some psychological chaos and stress to the mix.  Then, just when the heaviest portion of the major work projects was in full swing, my dad died on Friday, July 4th.

When eternity knocks, life stands still.

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Plant from coworkers

After dealing with mandatory arrangements in the first few hours after he passed away, I had no choice but to call in to  work out for a “time out.”  It really didn’t matter what other work responsibilities I had, nor even how important any of it was.

First things first, my life ground to a halt.  It was time to erect a temporary protective perimeter so I could stop, slow down and start to cope with grief.  Without apologies, I called my office to start there and speak with my boss about taking bereavement leave the following week. My major work project was immediately put on hold until I got back to work.  This was horribly untimely for work commitments, but I was so grateful for the support I received at my office for my need to deal with my loss.

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Returning to the office

A week later when I returned to my office, one of the most difficult emotional and mental tasks I have ever undertaken was to focus through my grief and complete my professional writing responsibilities.  I still had to finish a complex and heavily analytical major report.

There was no way I was anywhere near over my grief after only the first week had gone by, but I had to exercise extreme discipline and force myself to work through it and complete the huge project.  There were major legal issues involved, and the project was not something that could wait more than the week’s postponement or be delegated to someone else.

I had regained barely enough objectivity to be able to do the writing task, but it took twice as long as it would have if I had not been in the middle of the extreme emotional distractions of grief.  In all honesty, I really just wanted to check out of all my responsibilities for the next few weeks and go sit by a pool somewhere with my thoughts and drink lemonade!  Consequently, every half hour or so, I had to throw up my hands in emotional surrender and  stand up and walk away from my desk.  Each time I took a mental break and allow my heart and mind to reset I was able to sit down again in a few minutes and focus for another session.

It felt like my efforts on the writing project were actually unwelcome thirty-minute recesses from processing my grief.  I am not sure how, but it got done, and we finally completed the difficult drawn out project.

My highest priorities have sorted out and family, conversations with siblings and people in my inner support circle, and dealing with dad’s financial and legal affairs have taken obvious precedence.  Life stood still for a few days during a week of bereavement leave, and then after the big push to complete “the project,” many mornings in the following few weeks were borrowed from my normal work schedule to slow down, deal with emotions, take care of family things, meet with bankers, lawyers, government agencies, funeral directors and handle other urgent family business.

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Hired a probate lawyer

Quickly, without any hesitation, a lawyer was hired to handle the probate of dad’s estate.  Although I started out my career as a paralegal and worked in probate for three years, I wouldn’t think about doing the legal stuff myself.  Even with my lawyer handling all the court paperwork, I have many duties as executor of his estate.

Wow!  These details are consuming!

Although I have drafted hundreds of wills, trusts, probate court documents and deeds of distribution in my career, I have never seen an executor’s side of the process.  I already knew what my attorney had to handle, but my side of all this probate business is a new experience.

Taking time to pray

Taking time to pray

I have found there just isn’t time for some of the things I had set out to do before my dad died.  I am making a point to take time to think about what I am going through, and to talk to God about my feelings and grief.

I often remember the last day and the hours I spent at my dad’s bedside reading the Bible to him, and Psalm 23 was one of the last things I read to him.  The words spoken to him hover in the backdrop of my memories, and that last conversation and prayer  as I sat beside him.

Writing, Lupus Foundation activities and even little personal things like taking time to go get a manicure and pedicure have been brushed aside without a moment to consider how to do them!  I am finding it hard to sleep, and have been sleeping in too long in the mornings after I don’t sleep well.

Today, I finally made it to the hairdresser for a color (I should say “cover”) and cut. One by one, my habits and routines are being re-established.  Grief and loss are still there, but the wounds of grief heal slowly.

Managing Lupus While Managing Grief

Stress of loss

Stress of loss

The stress of loss

Losing a loved one is hard on everyone, and it seems we can never be ready for it.  Over fifteen years ago mom passed away unexpectedly, and now my dad has gone after a four-year battle with Alzheimer’s.  Although I thought I was adjusting to the idea, and in a way I was already grieving the loss of my father as I knew him before Alzheimer’s, it feels different than I thought it would.

It is just difficult any way you look at it.  When people you love are gone, it leaves a vacuum where a warm loving soul once was in your daily life, and it hurts.  With a deep ache beating in your chest, your heart sobs in silence.  Pain is stressful, whether the cause is physical or emotional, and that stress has predictable influences on health.  Stress can weaken us physically, weaken our immune system, or aggravate an auto-immune disease, such as lupus.  Sustained stresses like grief, stretch out their load on the normal endocrine balance, that is already somewhat out of whack when a person has auto-immune disease.

Fight or Flight

Fight or Flight

The part of our body chemistry that produces a surge of helpful chemicals to sustain us during a fight-or-flight situation or crisis, becomes very strained during periods of prolonged, sustained stress.  This crisis mode response can only continue for limited time, while glands pump out “emergency” help.  After a while, a body’s chemical response to continued stress becomes weaker and weaker, and the person experiencing sustained stress has a seriously reduced ability to cope in the face of continued pressure.  For someone with lupus, ongoing presence of stressful situations become the perfect environment for lupus to flare.  So, it becomes especially important to communicate well with our doctors about the major life events we are experiencing and about how these stressors are impacting physical health.

The storms of life

The storms of life

The storms of life

Over the years, many helpful articles about employees going through life’s most stressful events have passed over my desk in human resource magazines and legal management journals.  Usually they merit at least a few minutes of my attention, since employees routinely drop by my office, sit down with a sigh opposite me, and start to talk about the major events taking place in their personal lives.  Sometimes, employees have multiple stressful events raining down on them at one time, and some face virtual storms of stress, and even rarely an occasional emotional or spiritual hurricane!

My heart goes out to these burdened co-workers, and I privately pray earnestly for them, because I know personally how hard it can be to cope when flood waters of stress wreak havoc and bring unexpected mayhem.  It is no wonder these overwhelming events are commonly called “the storms of life.”

Stress affects people physically

The different responses people show to these events get my attention, and often I’m motivated to start a conversation about what they are experiencing.  Ever since reading an article years ago about how stress affects people physically, I have been especially focused on how it impacts employees, friends and others in my personal life when they go through unusually stressful circumstances.  What I see most often is employees who struggle with either the severe illness or death of a family member, face surgery, are moving, their spouse has lost their job or they are having turmoil or difficulty between members of their household.

I too, have had my share of these stressful situations, and some of these have triggered past lupus flares and at times some lasting escalation of lupus severity.

Measuring the stress of life’s events

Measuring Stress

Measuring Stress

A couple of research psychiatrists, Thomas Holmes and Richard Rahe, studied over 5,000 people to understand better how stress affects health.  They developed a time-honored list of the most common stressful life events that people routinely face, assigning a “stress score” to each type of stressful event.  The total score falls into one of three basic ranges of impact.  People with lupus or any other auto-immune disease may easily find that their stress score indicates a moderate or high likelihood of illness.  The items on the list may seem obvious, but reviewing it was thought-provoking for me.

Striking up a conversation about the effects of stress on people who are going through rough times usually starts by mentioning that they are experiencing one or more of the major stressful life events on “the list:”

Life Event Stress Score
Death of a spouse 100
Divorce 73
Marital separation 65
Death of a close family member 63
Imprisonment 63
Personal injury or illness 53
Marriage 50
Dismissal from work 47
Marital reconciliation 45
Retirement 45
Change in health of family member 44
Pregnancy 40
Business readjustment 39
Gain a new family member 39
Sexual difficulties 39
Change in financial state 38
Death of a close friend 37
Change to different line of work 36
Change in frequency of arguments 35
Major mortgage 32
Foreclosure of mortgage or loan 30
Change in responsibilities at work 29
Child leaving home 29
Trouble with in-laws 29
Outstanding personal achievement 28
Beginning or end school 26
Spouse starts or stops work 26
Change in living conditions 25
Revision of personal habits 24
Trouble with boss 23
Change in residence 20
Change in schools 20
Change in working hours or conditions 20
Change in church activities 19
Change in recreation 19
Change in social activities 18
Minor mortgage or loan 17
Change in sleeping habits 16
Change in eating habits 15
Change in number of family reunions 15
Vacation 13
Christmas 12
Minor violation of law 11
TOTAL EVENT RELATED STRESS SCORE:

Add up the numbers of stressful events that apply to you in the past two years to get your own score: _____

th3SLP7QUMHow might the level of your life stress be likely to effect your health?  If you are a lupus patient with active disease (53), high medical costs (38) and have lupus affecting your ability to keep up with recreation (19), your social life (18), and pain keeping you from sleeping well (15), you could easily have a score over 140.  Add just one more event on the list, like moving (2) or getting pulled over for a traffic ticket (11) and you have a moderate risk of illness.

Score of 300+: At risk of illness.
Score of 150-299: Risk of illness is moderate (reduced by 30% from the above risk).
Score <150: Only have a slight risk of illness.

Read More about the Holmes and Rahe Stress Scale @ Wikipedia.

The speech about stress

Down-to-earth advice

As the manager of a government legal department, when an employee goes through these rough times, one of my roles is to approve sick leave, bereavement leave or vacation, or to encourage them to otherwise take care of themselves.  After pointing out that they are going through one of life’s most stressful experiences, the advice is usually down-to-earth and pretty simple: 1) breathe, 2) drink, 3) sleep, 4) rest and relax.

Why?  Breath deeply, because so often people seem to psychologically hold their breath during intense stress, and deep cleansing breaths help reduce the effects of stress.  Drink plenty of water because it helps the brain function, supports the immune system and flushing out toxins from the body (usually I am the one who goes around offering glasses of water to everyone.)  Get enough sleep and rest, because stress is exhausting and emotionally fatiguing, and lack of sleep just increases stress even more.  If proper to my relationship with the person, I also suggest prayer, Bible reading and hymn singing in the times when sleep just doesn’t come, because finding spiritual rest through these alternative activities can help in the absence of sleep.  Rest and relax, because they need to be reminded to give themselves some slack and to realize that what they are going through is a normal human response to stress, and to be expected.

thRTKMIR17Every new employee we hire gets a similar version of this speech as part of their orientation, along with explaining that almost every employee we have hired in the past 25 years (except one exceptional person who either listened especially well to my advice or was just an rare physical specimen) became sick within their first month on the job.  Every employee gets the speech again as a friendly reminder, every time they go through something on the top half of the list, or any combination of things from anywhere on the list.

This type of stress seriously affected my health many years ago.  Just one week after my mother died, my father and I both visited his doctor to treat our severe bronchitis.  Grief and bronchitis do not go well together!  During the year that followed, I was naturally still grieving deeply, and that normal process had its impacts on my body and my lupus.  Within a few weeks after losing my mother, I was hospitalized with a ruptured abdominal artery, infected appendix and ruptured ovary (a very close call!) and within six more months my spine destabilized around an old trauma (and required neck braces and neuro rehab) while my lupus escalated to organ (CNS) involvement.  Within just one year of mom’s death I had graduated from treatment with only plaquenil to requiring adding weekly methotrexate, daily high dose prednisone and Imuran (azathioprine).  For ten more years, my medications never could be rolled back to the earlier levels, and eventually even those would no longer control my lupus.

Four resolves in grief

So, it is time to follow my advice.  My hope is that as I now grieve my father’s death in the coming weeks and months, the advice repeatedly shared with others will ring in my own ears and hopefully may help me remember to grieve healthfully.  These are my four resolves…

breathe

Breathe, hydrate, sleep, rest and relax!

First, I will breathe!  Taking long draughts of air, in and out, deep and full, inhaling, cleansing, body-calming breaths.  I will take my asthma sprays on schedule, and listen for my body telling me when it is having trouble, and I will make a point to intentionally breathe.

Then, I will hydrate, hydrate, hydrate.  Easy to say and harder to do.  But now, there is no fluid better for me than the cleansing goodness of pure, refreshing water.  I will carry it with me in the Arizona heat as I drive around, at home or work pour another glass often, and even set a timer if necessary to remember to drink water.  Eight ounces every hour, would not be too much water!

Next, sleep is the hardest resolve to carry out right now, but I will keep working at getting the sleep I need.  Since lupus robs me of so much sleep when I wake up in the middle of the night with pain, this takes some extra effort.  Yet, I am promising myself to make the most of my opportunities to sleep.  This means I need to replace my broken c-pap machine as soon as possible, since I fall asleep faster, rest better and wake up less often at night when I am using it.  Using my c-pap for my sleep apnea helps reduce fatigue, and that’s a good idea, especially now.

Last, I know that prayer, Bible reading, singing hymns and playing them at the piano are forms of worship that can become a bridge to real rest.  When I simply cannot sleep, I will turn to these until I get exhausted enough to fall back asleep, and in the process find a different kind of peace and rest.

When emotional or physical pain robs me of sleep, there is no place like the shelter of the Most High to calm and comfort my weary soul!  In the shadow of His wings, I sing for joy!  Even in my grief, even in the valley of the shadow of death, I will fear no evil, for thy rod and thy staff, they comfort me.  These were some of the last words I read to my father from the Bible a few hours before he left us.

Now, they speak peace and health to my heart as I grieve and remember.

Benlysta for Lupus Without Infusions?

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Benlysta (belimumab) for Lupus

 FDA approved Lupus drugs

Clinical trials are an incredibly important contribution to new drugs for lupus.  Before 2011, there had not been any new FDA approved drugs for systemic lupus in over 50 years.  Before that there were only three, aspirin, plaquenil and prednisone.  Now, with Benlysta, there are four.  New biologic drugs like Benlysta are constantly being researched and we will likely have more soon.  We all hope it won’t take another 50 years to get number five!  In the mean time, there are still things we can do to improve treatment.

using autoinjector

Using Auto Injuector

One of the drawbacks to Benlysta is the great cost for the drug and the infusions.  It is mixed following exacting rules before infusion, taking at least thirty minutes to prepare.  Living within walking distance from my new rheumatologist, I am also within each reach of the research arm of the practice.  The practice is participating in a handful of lupus related research trials, including some patients from the first Benlysta clinical trials.  The next chapter of my lupus treatment will mean a break in the monthly infusion routine.

What comes next?

autoinjector practice

Practicing self-injection

After having my last infusion a few days ago, in about ten more days weekly self-injections of 1/4 the amount of Benlysta will begin to replace monthly infusions.  The next couple of months will be spent participating in a clinical trial to test an auto injector that delivers Benlysta as a subcutaneous injection.  Last week, I had my training in how to use the auto injector and shot (wasted) a whole real dose of Benlysta into a fake “skin” device to prepare for my first self-injection.  The plan is to do the first and two of the other eight injections under the watchful tutoring of the research nurse, and the rest of my weekly infusions are at home.

Official information about the clinical trial

GlaxoSmithKline’s Phase II Open-Label Single-Arm Study to Evaluate the Reliability of an Autoinjector that Administers Belimumab Subcutaneously in Subjects with Systemic Lupus Erythematosus (SLE)

The primary outcome of the study is to assess the suitability of the autoinjector for self-administration of belimumab by subjects with SLE in real-life conditions. The study will assess the use of the autoinjector inside the clinic setting and outside the clinic setting. The study will also assess the safety and tolerability of belimumab administered subcutaneously (SC) via the autoinjector. Subjects will self-administer belimumab SC into the thigh or abdomen using the autoinjector device for 8 weekly doses. Subjects will return for a follow-up visit 4 weeks after the last SC dose of belimumab. All injections will be assessed by the investigators for success based on direct observation and/or the subject diary. A total of 118 subjects (treated with at least one dose of study drug) are planned to be enrolled in this study. The study will last through mid-2015 and is being done in these cities:

Gilbert and Phoenix, Arizona
Lansing, Michigan
Charlotte and Greenville, N. Carolina
Greenville, S. Carolina

autoinjection sites

Benlysta injection sites

Nearly foolproof auto injector

It seems like this will be nearly foolproof.  I am no stranger to “Sub Q” injections, after giving scores of them the old-fashioned way helping my husband with blood thinning Lovenox injections.  After a bed-side crash course in his hospital room a few years ago, I became a pro at using short-needles with pre-filled injections, and jabbing him in the tummy to help stave off the return of massive blood clots.  I stayed pretty calm doing them, so I have no apprehension about doing them with an auto injector with Benlysta.  In comparison, the new auto injector seems like child’s play.  Just like many other “Sub Q”  injections, it is injected somewhere either in a U-shaped area around the navel, or in either upper thigh.

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Making a difference

Fewer flares?

Because with the monthly infusions I tend to flare during the last week, it will be great to find out if evening out the dose to weekly injections will help prevent the recurring monthly flare cycle. I will be keeping a journal as part of the study, so look for updates here, too.

It is my hope that by my participation I will help decrease the costs of getting Benlysta to the people who need it most.  One bonus?  During my participation in the clinical trial, there is no cost for seeing my rheumatologist, lab work or the medication.  Also, at the end of the trial, there will be a small stipend coming to me of $5o for each in-office visit during the study.  There is always room in my wallet for a little fun money!

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