One Patient's Positive Perspectives

Archive for the ‘Work’ Category

Lupus in the light of a rainbow’s promise

wp_20170123_16_24_13_proOften, many days go by when looking outside at the nearby trees is overlooked.  The cold rainy day had soaked everyone as they made their way to the office.  Lupus grumbled loudly as aching joints and stiffness responded to the damp chill penetrating the office.

The thermal glass was much too thin to block the deep chill penetrating the wall.  The storm blanketing the mountains to the north with deep layers of winter snow brought a biting chill to our arid desert valley below.  Pelting rain struck the office balcony and trees below, as the sky gave a message of promise read by everyone standing there in awe.

320px-Butterfly_sikkimDark gray clouds hung heavy in the eastern Arizona sky as a billowing contrast to the brilliant brush stroke arc of colors swept across the sky.  The southern clouds even carried a faint echoing hint of a barely perceptible second bow.  Standing where an outstretched hand could touch the drenching rain, the combination of invigorating chill and the intensely beautiful sky snapped away the lethargy of the  aching rainy day.

wp_20170123_16_23_49_proRemembering the story of the first such rainbow adorning Noah’s sky refreshed a keen awareness of God’s many promises spanning the ages: never to flood the whole earth again, His Word delivered through holy men of old, the birth of a Savior, and the cross and resurrection that promise new life to those who believe and receive Him, and even now the promise of forgiveness and mercy while adventuring toward a heavenly future home.

With a heart full of these thoughts, today’s rainy day aches of Lupus were somehow dwarfed under the shadow of grand colors of promise hung over skies of history.  A deep cleansing breath and lingering sigh were the only utterance that really described the sight.

The duties of the day soon called out the time to go back inside and into the office kitchen, where a fresh cup of hot coffee waited to warm and nudge persistently back toward the reality of waiting duties on a desk inside. The image of that gorgeous sky evoked thoughtful quietness as I sat down again to view the distractingly beautiful scene outside my office window.

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Lupus and 200 hours with Benlysta

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Benlysta Infusions Started August 2011

Every four weeks, month after month for almost four years now, three to four hours of each month has been devoted to an infusion chair.  Doing a little mathematics reveals that a little shy of 200 hours have been invested in Benlysta (belimumab) infusions for lupus.  As medical milestones of each month, they are helping subdue and manage the impacts of lupus.  Before lupus, the threat of quitting work due to early disability retirement loomed ahead, but the powerful work of this relatively new biologic drug reversed that.

With the return of greater ability to enjoy challenging adventures, quality of life is improved.  Intensity of lupus signs and symptoms have dramatically decreased over time, although the benefits were slow to show up in the first few months.  The first few months showed little change in lupus severity, but during the next few months that followed, symptoms decreased, pain lessened, and flares began to be shorter and less frequent.  During the second year of taking Benlysta, overall health and strength gradually improved.  Now, after almost four years, the infusions continue and keep lupus in manageable check.

imagesOVOE762VTwo noteworthy observations about effects of a Benlysta monthly treatment cycle:

  • Signs and symptoms of lupus seem to increase during the week before my infusion.
  • After Friday infusions, extreme, bone-tired fatigue lasts through each weekend.
  • Immune system remained strong, if not better

Benlysta may be a great option for many lupus patients, may be just what their doctor ordered!  As for me, I thank God daily for the help and control of my lupus it continues to give.

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!”

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 and the undying hope of a glorious morning

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Glorious Morning!

Glorious morning!

These were not the first thoughts or words a few mornings ago!  Many nights, after dropping off into a hopefully deep slumber, the next realization at 2:00 or 3:00 a.m. is aching joints, malaise, deep bone pain or neuropathy pain, breaking up slumber like an unwelcome intruder.

Then, comes writhing around in bed in the dark of discomfort for a while, until it is clear the best option is just to get out of bed.  It would be nice to say prayer is always the first tactic, but unfortunately, that’s just not the case.  But, even when prayer is remembered at the top of the list, God’s answer does not always come in the form of more sleep.  His wisdom is unsearchable!

The pursuit of more sleep

The things that sometime help are reading, checking email, or playing mindless computer games (bubble popping games are the best,) while sipping a cup of decaf fruit tea.   Sometimes these efforts are enough to make going back to sleep possible, but sometimes the only thing that will bring sleep back is medication for the pain.  When  intense neuropathy is the culprit, augmenting nightly gabapentin with pain medications calms the gnawing nerve pain.  When it works, a return to sleep is sweet relief.

But, on nights when none of these tactics work, pain-induced insomnia becomes intensely wearing and frustrating.  These sleepless, painful nights often end with a realization that night is over, just as first rays of morning light peek over the backyard fence.  The sunrise comes much too early, often bringing with it a not-so-glorious morning. Prayers for sleep shift into requests for God’s gracious help to cope with the responsibilities of the day ahead, and for strength, encouragement and wisdom.

Perhaps one unlikely positive that comes out of a painful sleepless night, is that despite simple mental weariness, there is often little brain fog when morning arrives.

Out of a rough wearisome night emerges an opportunity and adventure of faith: accept the uninvited challenge and be unwilling to be undone by lupus!

A great many work days follow this kind of sleepless nights and personal prayers the next day for God’s help and strength never go unanswered.  As professional demands of the day arise, it is obvious my responsibilities cannot be met alone.  Silent prayer becomes my silent partner throughout each hour of the day.  The opportunity to strengthen faith is woven into the fibers of the day’s duties and activities.

On these bleary-eyed days, my human frailty and weakness is unquestioned, and petitions for undergirding and support are quietly fulfilled.  I clearly see and feel God’s presence and nearness.  As I am weak, He demonstrates His strength.  Borrowing from Him, the unspoken need of each hour is liberally supplied.  Shielded from the sight of all eyes but my own, the hidden miracle of God’s nearness and merciful care is displayed.

Not every sleepless or weary painful night is a battle ending in victory over the next day.  There are days when prayers for wisdom and strength are answered with a clear understanding that lupus flare and physical health situations require retreat into a day of rest and recovery.  Human limits, further narrowed by the effects of lupus, sometime require the wisdom to know when to put on armor and go to battle, and when to wave the white flag in a temporary defeat!

This, too, requires the faith and grace to accept what I cannot control.

Hope springs optimistic

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Hope springs…

Yet, hope continually arises, and the unreasonably optimistic side of my nature anticipates every morning will be better than those that precede it.  Every morning bears new promise to unfold into a wonderful day.  However, some days Lupus just doesn’t get that message and temporarily wins a battle or two.

So, the war against being undone by Lupus goes on, and most days the outcome of the battle turns out for the best. Whether met with brain fog after a night’s sleep, or mental fatigue from a sleepless night, there is always an opportunity to pursue personal victory

Routinely, even after a full night’s restful sleep, the first half of every day always seems to have its own special challenge.  As accommodation for my lupus, my employer has allowed me to shift my hours to start work a little later, along with telecommuting on Fridays.  I am very grateful for the encouragement and support of my supervisors and co-workers.

Most of my days begin with a mentally groggy, foggy, slow moving start.

Why brain fog, in plain English?

Brain

Why brain fog?

Why are mornings with lupus so rough?  As best I can understand, in extremely plain English, Lupus can affect morning mental processes in at least two ways, especially when systemic lupus activity has flared.

First, through accelerated cell death, and second, from inefficient clean up of the stuff those cells were made of.  Beside these common reasons, a small percentage of lupus patients like me, with some degree of central nervous system involvement, may also experience organic involvement of lupus wrecking havoc in their central or peripheral nervous systems.

thKPD1JCKQAs body cells go through the process of replacing themselves with new ones, old cells replicate by sort of unzipping the DNA chain inside the nucleus of the cell and new chromosomes floating around in the cell nucleus connect to each half to create two DNA chains.  Focused around the split up DNA chains, the nucleus divides and the cell pulls apart, separating into two new cells.

This cell division and multiplication happens constantly in the body tissues of every living creature.  As these cells multiply they help replace other cells that have died and broken down by a process called apoptosis, or programmed cell death.

Apoptosis can happen at an accelerated rate in patients with lupus.  So, with more dead cells comes more stuff the dead cells were made of.  These pieces of broken down cells put a strain on the body’s ability to clean up and clear these cell fragments away, and can morph into substances that trigger auto-immune response, like lupus.

I found a relatively easy to understand diagram that illustrates this complicated process as a flow chart, located within Chapter 3, “Interferon and Apoptosis in Systemic Lupus Erythematosus” of an open access book on Systemic Lupus Erythematosus by Daniel N. Clark and Brian D. Poole from Brigham Young University.  See, http://www.intechopen.com/books/systemic-lupus-erythematosus

Lupus Diagram of Normal and Lupus Apoptosis Clearance - Copy

Even when it isn’t working properly, the human body is an amazing miracle of engineering.  The metabolism of the human body is intricately designed to repair and clean up the effects of normal programmed cell death that tends to take place more intensely during sleep.  In lupus, the clean up is slow and the excess substances (cellular debris) that remain tend to distort the normal function of the immune system.

The effects of this housekeeping slow down are especially noticeable in the morning, and often are described as “brain fog.” With Lupus, left over cell fragments are not quickly cleared out of the body the way they would be in a healthy person. This cellular debris includes substances that trigger increases in auto-immunity and as well as clog up a body’s normal chemistry.

Build up of extra cellular debris, and increased autoimmune activity can both add to morning brain fog, joint inflammation, stiffness and pain.  Yet, mornings have their own special character, and if not quite glorious, there is still the new hope every morning that the fog will clear quickly, and there will be a great day ahead.

Sleep techniques for lupus pain

Sleep techniques for lupus pain

Reclaiming half the day

However, some days, like the one I wrote about from last week, morning brain fog lasts especially long and makes going to work on time nearly impossible.  After waiting for the entire morning to pass before mental clarity returned, that day I shook my body into action and headed out for my office at noon to reclaim the half-day of work that remained.

Every time I exercise the ADA accommodation my employer has granted for my lupus allowing me to work around my physical limitations, I am extremely thankful.  That day was no exception, as I drove to work my thoughts turned to thanking God for the gracious support and encouragement of my employer.

After muddling through writing about this in the middle of that ‘”brain foggy” morning, the realization arrived that it would be smart to wait and proofread the post later, when writing and thinking skills would be better.

Getting to “later” took several more days! There were just too many grammatical glitches buried in what I had written during deep brain fog to correct quickly, so most of the editing waited for tweaking during Friday’s Benlysta infusion.  After one last reading, proofreading was done and it was finally ready to share.

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Benlysta for Lupus, the first 1,000 days

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1,000 days of Benlysta

This week (yesterday) marked a quiet little anniversary, the 1,000 day mark after beginning monthly Benlysta infusions for Systemic Lupus Erythematosus on August 24, 2011.  So, without pomp or celebration, today begins as day 1,001 since starting Benlysta.  From the beginning, the Benlysta adventure is chronicled here, and a special page indexes all the posts about this journey.

This 1,000 day Benlysta milestone gave me pause to ponder whether there were any other 1,000 day milestones I could  use to compare to this span of time.  A little research led to an interesting group of comparisons, some were serious and some were fun, some were history and culture changing, and some were of fleeting and trivial impact.

1,000 days might be enough to carry out significant change, or long enough to waste accomplishing absolutely nothing meaningful at all. I will let you be the judge, but history will judge with perspective, and ultimately God will always be the final judge.

How long is a thousand days?

1,000 days is equal to exactly 2 years, 270 days (unless one of the years is a leap year, resulting in 1,000 days being equal to 2 years, 269 days. Also, 1,000 days expressed as a decimal fraction is 2.74 years.

1,000 day comparisons

  • thH9WE6Z7AThe approximate length of the public ministry of Jesus Christ from the first miracle in Cana to his death on a cross outside the City of Jerusalem, as documented in the first four books of New Testament, the gospels of Matthew, Mark, Luke and John.  History and life changing!
  • The length of a Columbian civil war (The Thousand Days War) fought between 1899 and 1902 over an ideological conflict between liberals and conservatives that divided families and took the lives of 100,000 Colombians before a mutual cease-fire was reached.  An end to strife.
  • th7SY4JSR2The approximate length of the presidential administration of John F. Kennedy, that lasted 1037 days, from his January 20, 1961 inauguration  to his assassination on November 22, 1963.  A death that shook the nation.
  • 1,000 days from the start of a woman’s pregnancy until her child’s 2nd birthday, a crucial period for proper nutrition that allows children to develop without permanent cognitive and physical delays.  Important beginnings.
  • How many consecutive days a 6th grade boy from Holmen, Wisconsin wore a Green Bay Packer’s player Aaron Rodgers’ jersey, while living in a household of Minnesota Vikings fans.  Much ado about nothing!
  • How long Kate Middleton has been a duchess after marrying Prince William.  She reached the 1,000 days milestone in her marriage and acquired royalty earlier this week on May 20, 2014.  A royal beginning.
  • thSTW4CIIDThe length of time it takes for Landana 1,000 Days Dutch Gouda cheese to naturally ripen, while stored at a closely guarded secret specific temperature and humidity. The fruit of patience.
  • The length of time the famous Schatz 1000 day clocks can run without winding. Schatz 1000 day clocks bear a “54” in a circle on the back of their movements, and were first made in 1954. An engineering marvel for its day.

Lupus before the 1,000 days

My past 1,000 days with Benlysta have significantly stabilized my Lupus, after all other treatments we tried before it were exhausted.  1,000 days ago I had come out of a five-year, Rituxan-induced remission, and was facing the likelihood of an early disability retirement.  Those were rough days, things were getting worse by the week, and I felt absolutely physically miserable most the time.  But, I was not in despair!  The joy of the Lord was my strength, and my daily walk in dependence upon Him helped me keep personal peace, patience and hope.

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August 24, 2011

1,000 days ago, my joints were swollen constantly, my CNS symptoms were lasting all day long some days, I was increasing unable to manage my work, had significant cognitive difficulty with memory, problem solving, logical thinking, written business communication, and managing my government law office.  I was in an unending siege of bone-tired fatigue.  Mouth and nasal ulcers were almost constant, and my health was a wreck.  I was in the middle of a long, slow, unremitted lupus flare.

While trying to keep up with my job, I was struggling.  I was using up all my sick leave, plus using all my vacation leave in lieu of sick leave, and occasionally had to take a few days off without pay to deal with Lupus.  It was a rugged ride and a very challenging adventure!

Lupus status on day 1,001

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Benlysta after 1,000 days

Gradually after beginning Benlysta, my Lupus problems began to lessen and then become generally well controlled.  I still have bad mornings, but now rarely have to take more than a half-day off due to lupus.  I continually have a modest balance left of my monthly sick leave accrual, and have not had to dip into other types of leave for lupus-related work absences in over a year or so.  Although I don’t feel like my health is “amazing,” most days I feel generally well and handle my daily responsibilities.

Benlysta is expensive, there is no question, and it cost my employer between $8,000 and $13,000 each month, an annual total of about $100,000 for each of the first two years.  A few months ago, my new doctor learned from representatives at GlaxoSmithKline that I was the only patient receiving Benlysta at a hospital.  They told her I was “famous” to them because of this unusual requirement, and that they all knew immediately who I was when she started describing me and began discussing my case.  I thought that was a little bit spooky!

The first two years of Benlysta cost more than double my current annual cost that my insurance pays now for infusions at my doctor’s office.  Only after leaving my previous out-of-network rheumatologist, it was revealed that the insurance-imposed hospital infusion requirement was strictly because my rheumatologist was an out-of-network doctor.  Now, with my new in-network rheumatologist, the average monthly cost to my self-insured employer is only $3,500, and my cost is an affordable $35 co-pay.

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Thankful for Benlysta

I am thankful that because of Benlysta, a premature end and early medical retirement from my career was averted narrowly .  This month, I finally reached full retirement age based on years of service and age, and now qualify for my full government pension.  Now, if for some reason I need to suddenly stop working for health reasons, my full pension is available to support me through life’s next chapter.

My hope is to work at least about 18 months longer, when my retirement percentage formula will reach the last higher level pay adjustment before reaching age 63. I plan to be out and about enjoying new lupus adventures before that age!

 

 

Benlysta for Lupus after 33 Months

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33 months of Benlysta

This week marked 33 months of Benlysta infusions for my lupus, adding up to almost three years of taking the only FDA approved biologic medication just for lupus.  Over these past few years, we have seen my lupus gradually quiet down greatly.  This was time well spent on accomplishing a good, but expensive outcome!

So, after contemplating the amount of time that has passed since I started the infusions, I mused over some mental calculations considering other accomplishments that might have taken comparative amounts of time.

Long enough to  build the Titanic

Build the Titanic

Although the past three  years haven’t exactly sailed right by, it would have been more than enough time to carry out one of these feats:

Build the Titanic –  perhaps if they had spent longer in dry dock strengthening the hull of the ship, it would still be afloat today?  I am glad to still be afloat in my career and personal life, thanks to good lupus medications and treatment.  I am grateful that I haven’t completely crashed, burned and sunk, although I came nearly too close to the reefs of prednisone withdrawal at the holidays!

Master a new language – the linguistic experts all say it takes about 2  years to learn a new language by immersion, but learning a language strictly in a classroom takes at least twice as long or more.  However, I have definitely learned the new language of lupus auto-immunity and infusion speak!

Earn a college degree – It takes about three years to finish the course of study for an accelerated bachelors degree, to complete law school or medical school, or to complete a medical residency after medical school.  The only third degree I have received in the past two years was from my previous doctor, when he wanted to know why I wasn’t exercising enough!

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Sail around the world

Sail around the world – most small ocean cruisers take two to three years to sail around the world.  Although some accomplished sailors have done it in less than a year, some have even taken as long as ten years to carry out this challenging nautical adventure.

Launch a new company or rebrand a product – many experts of business say that it takes at least three years to redefine the image of a company or product, or successfully launch a new one. (There’s the nautical theme again!)  New business ventures are generally considered a 3-year journey.

Drift ashore after circling the entire Pacific Ocean several times –  an incredible three years after the tragedy of the tsunami in March 2011, a little battered boat was found overturned on the shore of Daren Township, Taitung County.  Somehow, this reminded me of the “three-hour tour” of the Gilligan’s Island television show of the 1960s, except that it took three years instead of three hours, and this boat washed up on the beach unmanned.  At least my nautical comparison holds up, in that both were both waterborne vessels, but maybe that is stretching it just a bit.

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Asparagus, 3rd year from seed

Plant and harvest a new asparagus bed – it only takes a mere three to seven years to produce harvestable food from asparagus plants started from seed.  The only thing that ever grew in the asparagus bed in my mother’s yard was a stilly cat that planted herself in it, rolling over on each new sprout and hiding from birds in the dappled feathery shade.  If my mother hadn’t loved the cat more than she loved asparagus, I’m afraid the cat would have been planted in the flower bed instead. My three-month old garden yields Romaine lettuce, spinach and chives this spring, producing faster than we can eat it, but alas, no sign of hard-to-grow asparagus!

Become a not-quite formidable opponent – It takes from 3 to 5 years to attain the first belt in karate, and about the same amount of study under a karate master to gain each additional belt after that.

I think I’ll stick to milder athletic competitions, such as tackling a day’s work, grappling with laundry, subduing a sink full of dishes, navigating the grocery store (nautical theme, again!) or whipping up some supper on a breezy spring evening.  Karate sounds too much like hard work to keep my attention for three years.

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3 years to a calmer harbor

So, instead of spending several hours every fourth week of the past 33 months getting Benlysta infusions, I could have accomplished any one of these other illustrious adventures… (or not!)

But on second thought, the investment in Benlysta infusions for my lupus was proven a very profitable one, and has helped me arrive in a much calmer, safer harbor (one last nautical quip!) than I would have otherwise been likely to reach.

[I realized today that I had reversed the order of the words in the title of this post, and instead of the original “Lupus for Benlysta after 33 months” that didn’t make sense, I correctly renamed the post “Benlysta for Lupus after 33 months.” LA 4/1914]

 

 

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