One Patient's Positive Perspectives

Posts tagged ‘music’

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.

Lupus adventures contemplating a musical quasi-retirement

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Stress & lupus are unfriendly companions

With lupus, it is clear that health issues could shorten the years that I can continue working in the demanding legal profession.  There is no question that handling stress is part of my job description as the legal manager of government law department!  However, stress and lupus are not friendly companions, so reducing my career stress is part of my longer-term, second quasi-retirement work strategy.

The idea of retiring sends many skittering thoughts across my mind, more and more often, as I face the adventures of my second half-century.  I turned 56 recently, so I cannot claim anymore that I am in my early fifties.  Not by a long shot!

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Challenged by voice on the radio

The thought of stopping work completely is hard to imagine, and I plan to keep working, somehow.  Perhaps, a new kind of work with less stress would be a more wholesome alternative to idleness.  This week while driving home from work, I heard a college commercial about going back in time to ask yourself what your twelve-year-old self wanted to do with your life.  The voice emitting from my car stereo challenged me to think creatively about an enjoyable quasi-retirement career.

So, some days I mull over possibly teaching music, perhaps part-time as a choir director in a private school, or by taking on a few private voice and piano students.  This sounds like the dream job my twelve-year-old self might have approved of.  When I was young, I played the violin in my school orchestra, long before lupus arthritis in my hands made me put my violin down.  My dream job at twelve was to see myself playing in the Oakland or San Francisco Symphony.

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12 year old self dreaming…

I envisioned enjoying spending long hours of rehearsals, playing classical music among a host of other instrumentalists with violin bows moving together in perfect synchrony.  I never really dreamed about doing anything else.  I thought about other things, but only about playing in the symphony did I sigh wistfully time and time again, wishing and hoping that would be my lifetime occupation.

My parents had season tickets at the Oakland Symphony in the East Bay in Northern California.  Occasionally, I would get to go along, and I vividly remember evenings I was able to enjoy the great Itzhak Perlman play his violin when he was in his prime.

San Francisco (old) War Memorial Opera House

San Francisco (old)
War Memorial Opera House

I have always loved music, and had the privilege of attending many performances in Oakland, and even more across the bay in San Francisco.  Symphony and opera performances at the old War Memorial Opera House on Van Buren Street brought me such joy!  As music students, we could purchase special reduced-price seats on the end of the ground floor orchestra section, reserved where we could see the flamboyant conductor, Seiji Ozawa, “up close.” I loved to watch his expressiveness and visual interactions from my favorite spot at the end of the first row on the concert hall floor.  I was forever changed by this rich set of musical experiences.

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BART subway under the bay

As a music student at the university, my friends and I would head for the opera house in a group, riding on the B.A.R.T. subway trains through “the tube” submerged under the San Francisco Bay and then through the Embarcadero, Montgomery and Powell Street stations buried beneath the heart of the City.  Disembarking at the Civic Center station, we emerged to cross the plaza, walking past city hall in the chilly evening air, to arrive for 8:00 o’clock evening performances at the opera house.

I had the privilege of serving occasionally in high school and college as an usher several times during Opera performances, and fondly remember Beverly Sills in her performance of Thais.  I recently found a recording online of one of her 1976 performances, just a few months before I graduated from high school. Beverly Sills in Thais, San Francisco 1976

Music Teacher Ads

A job like this, but not yet…

When I entered college, I really anticipated becoming a high school choir director.  Now, part of my planning for a future retirement includes reducing debt, lowering monthly living expenses and determining the costs and insurance coverage for my lupus treatment.  The other part is contemplating an arrangement where I can work at something that I love, like music, with hopefully at least half the stress of my current career.

Recently, a local charter school organization here was recruiting music teachers for two new campuses opening in the fall of 2015, and it made me stop and assess my retirement timeline.  However, I am not quite ready, but will be looking for just that sort of opportunity when the time is right.

I have worked ever since I started my first summer job when I was sixteen, first as a cashier in a neighborhood hardware and variety dime store.  My duties included stocking shelves with a variety of products such as porcelain vases, bath towels, kitchen appliances, drills, nails, TV vacuum tubes, board games, toys, train sets and women’s clothing. Most of my time was spent at the cash register and nearby candy, counter, jewelry counters and gift wrapping station.

Open a book about Lupus

Worked in libraries to law…

Over the years, I worked in the libraries at both universities that I attended, got married, was a public relations representative for a major fast food company, gave birth to our daughter, spent a couple of years as a church secretary and then gave birth to our son.  My husband was finishing college while was working at home for a neighborhood tailor, while my husband grew increasingly ill with life-threatening asthma.  During these early few years, my husband was repeatedly hospitalized, as his asthma continually worsened.  For about three years he was completely unable to work and disabled.

As a result, starting in the mid 1980s, my work outside the home became a must.  Today, I look back at nearly thirty years working in legal offices.  First, starting as a paralegal trainee in a private law firm, I grew professionally in three more firms over the next half-dozen years.  Then, twenty-three years ago, I went to work for a government law department, promoting up through non-lawyer supervisor and management positions to my present role as the third member of the management team, along side two senior attorneys.

Lupus and the budget crunch

Posturing finances for
quasi-retirement

I have loved my career to this point, and I am sure that after I retire, there will be a great deal about it that I will miss, dearly.  However, with my health and lupus reminding me that I am not getting any younger, I have spent much time recently in prayer and serious consideration over the next steps in my career.  My husband and I talk more and more often about it, and we are actively posturing our finances for an inevitable change in my occupation.

More lupus facts, melodies and familial autoimmune maladies

Familial Autoimmunity

Me with siblings @ 1963

Me (youngest one) and my siblings 50 years ago

This original post was written once on Saturday May 18th, but went into the netherworld of glitches in cyberspace.  Today, I am reviving that attempt.  The day I started this post would have been my mother’s 80th birthday, and remembering her prompted me to take a very special look at our familial autoimmunity.

Over just four generations, my family has many autoimmune examples including lupus, rheumatoid arthritis, gout, psoriasis, thyroid disease, diabetes, severe allergies and asthma.  All month-long we had thus far been spotlighting various lupus bloggers, but this post is different.  Long over the intense grief that followed the loss of my mom, now she is remembered with twinges of recurring lament over her failure to survive a massive stroke at 65.

Cousins

Me (shortest) with siblings (in front)
and cousins (behind)

My mother was part of an autoimmune heritage that began with her mother, and extends through four generations through me to my daughter.

Happily, our four generations also share a deep love of music, also passed down from mother to daughter like a beautiful melody unrelated to our shared autoimmunity.  This post is about melodies and autoimmune maladies.

Grandma with RA

Warming hands in soapy water

My grandmother Bonnie had rheumatoid arthritis.  My mother remembered her mother arising each morning with aching, swollen, stiff hands.  Grandma would walk over to the kitchen sink and massage her hands in the dish pan’s warm soapy water, while her painful hands were soothed by its penetrating comfort.  Then, she would grab a kitchen towel to dry her hands, and then neatly fold and set it back on the kitchen counter.

Next, on most mornings, grandma would go to the piano in their old-fashioned parlor and sit down to play.  My mother followed her, watching, but sometime was still sleeping at this hour and woke to the strains of music wafting through the house.  Although it was equipped as a player piano, grandma played it herself every morning without running the player scroll.  Grandma explained to her that it felt better in the long run if she made her painful hands gently play the piano, so they could become stronger and more able to fight the arthritis that tried to cripple them.

Playing piano in the mornings

My mother explained that my grandmother took quinine every day for her rheumatoid arthritis.  By the end of her life,my grandmother was diabetic and blind, perhaps from the diabetes, or from her cataracts from a lifetime of steroids,  or perhaps from collection of quinine on her retina.  Quinine is the drug from which modern-day Plaquenil is derived.

Oranges, quinine and grandma

I cannot break into a fresh orange without remembering my mother tell me about the quinine in its peel, and how good quinine was for me.  It was often in this context she would mention her mother’s RA. We never knew what actually caused my grandmother’s late-life sight loss, but she lived to the age of 83, finally succumbing to complications of her diabetes.

Mom with Gout

Mom and her gout

My mother never showed any signs of RA, but she did suffer from gout, another form of autoimmune arthritis.  Her gout came and went in occasional flares and episodes.  When uric acid levels built up too high in her blood, she eventually suffered pain when it began to spill over from her blood into her swollen, red finger and toe joints as painful uric acid crystals.

Mom 1990

My mom @ 1990

My mother described the intense pain and we could see the obvious redness, distortion and swelling of her joints.  Gout only bothered her acutely a few times, because with the diagnosis she learned about specific diet changes that help control uric acid build up and prevent flares, so she managed it fairly well.

Mom watched and learned

As a little girl, my mother liked to watch and listen to grandma play the piano, and eventually learned to play a little herself.  She told me about times she would enjoy sitting at the piano herself, and how she learned to change the songs on the player roll.  Mother also loved to try to play the keys along with the automated pianist as it rolled its way through the songs.  My mother grew to love music, and infected me with that love, too.

Me with Lupus

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Reading to my grandchildren

My childhood foreshadowed my adult lupus diagnosis with many signs and symptoms of this autoimmune disease.  At the age of  five,  signs of knee and hip arthritis appeared, and by sixteen arthritis invaded my hands and fingers.  Growing up, there were several episodes of discoid lupus rashes on my hands, face and neck that showed up after playing outside in the sun.  My parents called the rashes a “sun allergy.”  Then, there was a year of unexplained severe anemia in my early childhood, along with severe episodes with unexplained high fevers in the absence any signs of infection.  Throughout childhood there were countless episodes of weeks of extreme fatigue.

All these recurring and varied signs and symptoms led my doctors to repeatedly test me for my grandmother’s autoimmune diseases: diabetes and rheumatoid arthritis.  With tests always being negative, my family doctor would diagnose “unknown virus” and put me on a diabetes diet at five as a precaution.  The diet was a good thing, overall, because it was a healthy balanced meal plan, very much like the Weight Watchers plan I am following today.

bf on musicMy autoimmunity finally was clearly diagnosed as lupus when I was thirty-something: not surprising, considering the known familial autoimmune heritage from the two generations before me.  Any earlier history of auto-immune disease in our family remains unknown, however, my sister had her thyroid removed after autoimmunity destroyed it.  One of my brothers is showing signs of major arthritis, and I encouraged him just this week to discuss our familial autoimmunity with his doctor.

Now, I am under a good treatment plan for my lupus, and stay active, exercise and play the piano almost every morning.  Even when my joints are swollen, I try to exercise gently, do mild yoga stretches and I sit down to play music.  I hope to retire from my government legal management position in a few years, and move into my second career as a music teacher.  I look forward to this less stressful future occupation.

Daughter with Psoriasis

my kids @ 1989

My kids when they were little

My daughter inherited the genetic autoimmune legacy and has severe psoriasis and has severe asthma.  Her psoriasis is the head to toe variety that is measured in percentages of total skin involvement.  She never has a time when she does not have countless plaques on arms, legs and body.  Thankfully, her lovely face and contagious smile are mostly spared from its marring eruptions, although her scalp has constant aggressive flares.

In her teen years when she first developed psoriasis, its severity broke my heart.  I amazes me how gracefully she bears this autoimmune burden.  She plays many instruments, teaches elementary band, choir and general music.  She watches and waits, ever alert for signs of psoriatic arthritis that might threaten her dexterity and ability to play the flute and other instruments that she loves.

My son has four children and the oldest has severe asthma, just like my husband and daughter.  He is a young assistant pastor, church choir director and plays a little piano too.  His son is learning piano, just like my husband, my grandma, my mother and me.

Lupus Facts @ Prognosis and Hope

Lupus & Normal Life Span: With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.  The 10 to 20 percent of Lupus patients with more severe lupus can expect to live a long, productive life with proper early treatment.

For more information about this lupus fact, please read my full post on this subject from last year – May 28, 2012

Pregnancy Outcomes: Advancing technology and better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with inactive lupus can have successful pregnancies.  First, it is a great idea to learn about the issues and risks of pregnancy in lupus.

For more information about this lupus fact, please read my full post on this subject from last year – May 29, 2012

Working with Lupus and Accommodation: Most people with lupus are able to continue to work. However, some may need changes to their work environment and schedules, such as flexible work hours, job-sharing, and telecommuting.

For more information about this lupus fact, please read my full post on this subject from last year – May 30, 2012

Lupus Fatigue and Finding a Fighting Spirit

tidal wave

A tidal wave of lupus fatigue.

As I stand barefoot on my cold, wet beach and watch the receding tidal wave of lupus fatigue ebb away from my shore, I see surrounding me the vast lifestyle devastation the overwhelming flood of tiredness left in its wake.  Mayhem is everywhere.  Laundry sits unfolded, dust accumulated, real and junk mail sit in an unsorted stack overflowing my desk, and my rugs and floors are looking pretty sorry indeed! All around is a general sense of disordered clutter and mishap.

While seeking a means to withstand the exhaustion and bone-tired feelings, all my work seemed half-abandoned at home and at the office.  I spent many days sleeping until noon, some days telecommuting, some days lounging in pajamas all day, a few days going in for half-days, but braved only a couple of full in-the-office work days.  The siege of fatigue waters have left an unkempt landscape about me as my physical weariness finally begins to recede.

tsunamipic

Domestic and professional
disorder after a flare

Once again, I begin to pick up the scattered domestic and professional pieces of my normal life following a lupus flare.

Although this flare has been quite disabling and my lupus arthritis was very aggravated, I am thankful that neither my central nervous system lupus nor neuropathy flared.  Through the last couple of weeks, these often clear manifestations of my lupus have remained unusually quiet, and for this I am grateful.  At least, this was not an all out every system lupus attack, it was merely physical and not mental.  The only predictable thing about lupus is its unpredictability.

Butterfly in the Snow

Hope and snow yesterday!

I had hope yesterday and even more this morning that my two-week flare of lupus fatigue is finally ending.

Yesterday brought a massive real weather storm to Arizona, and parts of the Phoenix valley saw snow, sleet and hail – a rare phenomenon in our desert city!  I stood on the second floor balcony at work with co-workers, as we held our hands out to catch and look at the soft white substance that melted on our hands and accumulated on ground below.  My son-in-law, a native Phoenician, regaled us last night with a report of his first experience driving in snow.

Although we had heavy rain and icy forms of precipitation all day long, I was feeling measurably better and was able to work a full day at the office.  My joints were still very sore, but my spirits and energy were on the rise.

Lupus Alone

Birds, singing in the rain!

This morning, as I hear the birds singing outside my window, I feel a little like joining them.  Perhaps a couple of the areas of disorder that are now beginning to bother me will get tackled this morning. Earlier this morning, I stood outside in the 48 degree morning chatting with husband while his rain-soaked car warmed its engine and dripped into the puddles on our driveway. The cool, moist morning air felt refreshing today instead of wearying.

With near exuberance I heard myself proclaim, “I feel almost like myself again.”

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We will rejoice and be glad

Indeed, every storm has an ending, and today, I have once again found my fighting spirit!

I am just now reminded of the scriptural words I sang to a simple hymn I played yesterday morning at the piano.  “This is the day that the Lord has made, we will rejoice and be glad in it,” Psalm 118:24.

Lupus and the Name Inside the Book

The name inside the music book

I opened my choir book to look inside the front cover of the Christmas music the choir director had just passed out.  This year, my church choir will be re-performing a cantata we last sang several years ago.  This year, the music was not reassigned to the same musicians and was given to different singers.  Peeking inside the front cover of mine brought a wistful tear to my eye, and a flood of memories about the last person who used it.

The book had the name “Gaynel” written in pencil in the upper right hand corner of the title page of the music.  Gaynel had lupus, too, and I have mentioned her here once before.  She was almost old enough to be my mom, or at least my aunt.  Gaynel was a charter member of our church, and was loved fondly by everyone who knew her.  She and her late husband were very close friends with my in-laws who all originally came from New York.  My husband and I have known and loved her and her extended family for over 25 years.

Gaynel’s story is unfortunate while also one of faith, hope and courage.

Lupus Nephritis

In the last years of her life, Gaynel was a widow and battling kidney failure due to lupus nephritis, while undergoing home peritoneal dialysis.  Everywhere she went, she carried a rolling oxygen tank with her.  When she finally became so ill that she left the transplant list, we all sorrowed with her.  It became clear to her doctors that she was too weak to make it through a second transplant surgery, after her lupus nephritis destroyed the transplanted kidney she had received several years earlier.

I remember Gaynel before she had kidney failure.  She was a dynamic, cheerful spiritual leader in our church.  She and her late husband directed a large children’s bible club ministry in our church that involved countless children over more than twenty years, including my son and daughter.  She was also the church treasurer, a role she continued until right before her death two years ago.  The one other ministry that she was extremely determined to continue until the end, was her love of singing in the church choir.  For several of her last few years, one of the choir members helped her to her seat at the end of the alto section of the choir, with oxygen tank in tow.

Preparing for Christmas music

So, this season as we prepare our Christmas Cantata, I have the bittersweet memory-invoking honor of holding the choir book that was last used by Gaynel.  She was a hero to me, and an inspiration to everyone who watched her last years of suffering.  She faced them with cheerfulness and unwavering joy of faith.  Although she was the victim of lupus, she was neither bitter nor blaming, and accepted her fatal situation with poise and grace.

She often acted as if her lupus didn’t even exist, and never was the one to bring it up in conversation.

Her life touched so many, including mine

Two years have now gone by since her passing, and she is still mentioned from the pulpit and on the lips of all who knew her as a stalwart example of faith through trial.  She set a benchmark and example that I fear I cannot begin to meet, except as the grace of God might help me become a little more like Him.

Gaynel was a Christian, both in faith and in practice – facing her lupus and death, she had unwavering faith and strength of heart.  She was very much “Christlike,” the real meaning of the word “Christian.”

Gaynel’s life touched so many, and now, in the quiet small way her book now is held in my hands, she is still touching mine.  May I sing to God’s glory with a heart of faith as she did.

______________________

To learn more about lupus nephritis, read “Kidney Disease,” an article on the Lupus Foundation of America‘s web site.

Lupus and remembering a few of my favorite things

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Raindrops on roses

What are my favorite things that somehow connect with my lupus?  How can my favorite things make a difference? There are so many good things in life to cherish and celebrate, no matter how difficult our limitations and challenges may be.  I am very thankful for a few new favorite things that are part of my life with lupus.  Some of these new favorite things have filled the void created by the things are no longer part of my life, because of lupus.

I am reminded of the Rogers & Hammerstein musical, The Sound of Music, when Maria and the Von Trapp children burst into one of the all-time favorite songs of my childhood:

Whiskers on kittens

Raindrops on roses and whiskers on kittens
Bright copper kettles and warm woolen mittens
Brown paper packages tied up with strings
These are a few of my favorite things

Girls in white dresses with blue satin sashes
Snowflakes that stay on my nose and eyelashes
Silver white winters that melt into springs
These are a few of my favorite things

Warm woolen mittens

When the dog bites
When the bee stings
When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad

Here are a few of my own favorite things, sans the singing:

Cycling and swimming and gardens with butterflies,
Cooking in the kitchen, and crows feet with kind eyes,
Freshly mown grass and my favorite porch swing,
Wind in the branches and birds as they sing.

A husband who loves me!

Friends who listen and people that care,
Playing the piano, with a hymn in the air,
A husband who loves me, and being his wife,
Together, we can weather most any tough strife.

When the pain strikes, and neuropathy stings
And my lupus gets bad,
I try to remember life’s many blessings,
And think on the joys I’ve had.

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Think on the joys!

Lupus and the top ten essentials of life

There are many essential things every person and lupus patient needs for health and a balanced life. These critical things fall into two major categories: the things that cost money to get, and the most essential things that are priceless that cannot be bought.  For a healthy person not facing the challenges of lupus or any other chronic illness, their list might be a slightly different, but my hunch is that many people would have a list very similar to mine.

My list is simple, divided into the two categories and listed in descending order of their overall value, importance and necessity:

Priceless

THINGS THAT DEFINE ME AND MY LIFE… PRICELESS!

  • My husband: love of my life, companion and best friend
  • Spiritual life: God, the Bible, my church and fellowship with other christian friends
  • Family: children, children-in-law, grandchildren, in-laws, siblings, father
  • Music: Our piano, singing, at least one hymnal and other music books

Paycheck

THINGS THAT MAKE ME GO TO WORK

  • Nutrition: water and healthy food
  • Comfortable secure home: yard, garden and large patio with lots of shade, basic plumbing
  • Comfortable wardrobe: clothes, shoes, and a good sun hat
  • Physical needs: sleep, hygiene, dental care, medical care, medications
  • Transportation: car, gas, maintenance, insurance, tires or public transportation
  • Communication/Education: cell phone, Internet access, texting ability, radio, books

What is on your list?

Coming up with a list of top ten essentials is a challenging exercise that is part of the 30-day health writer’s challenge.  This made me ponder a little more than normal what really matters the most in my life.  I found it very interesting that I didn’t even include my legal career or job in the top ten list anywhere, unless you infer the need to make money to get the things in life that are not “priceless.”

What is number one on your list?

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