One Patient's Positive Perspectives

Posts tagged ‘fatigue’

Lupus in a Victimless Life – Despite Limitations

Series: Lupus in a Victimless Life

Butterfly on yellow daisy

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

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

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

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

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

Despite the Limitations of Lupus

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

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

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

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

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

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

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

 

 

 

Lupus and Listless Grocery Shopping

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We certainly don’t need tomato sauce!

We could stop right there with the article title and begin delving into the woes of shopping while listless, weary, and exhausted from lupus.  But, that sounds way too depressing!  With your permission, our musings can head in a different direction.  This idea is little about fatigue and completely about trusting my memory!

Recently, my husband consented to go along on a trip to Costco to buy many giant-sized packages of groceries to feed the five grandchildren (and their mom and dad) who are temporarily living with us.  Then, a quiet little “how can I possibly do that” panic overtook me when he responded, “okay, let’s go right now”.  There was no shopping list, and I didn’t have time to write one!  What mattered most was having a willing cart pusher and muscular package lifter to help.

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Yes, there’s Plenty of Mustard!

Shopping listlessly (is that really a word?) with lupus is never a very good idea, mostly because of the well-confirmed short-term memory failures in my past.  Listlessness made me too likely to purchase items already on my shelf at home while forgetting to buy the things that are needed the most.  With my short term memory in a somewhat challenged state due to impacts of CNS lupus involvement, shopping with a well thought out list is usually a much better idea!

A nifty high tech solution suddenly popped into an otherwise not so clear brain.  Why not go through the kitchen and just take pictures of what IS in the cupboards, and then check the pictures on my cell phone if we cannot remember whether we need an item.  So, my husband patiently waited, smirked and chuckled a little while I went through the cupboards speedily snapping photos with my cell camera, and even held the fridge door for me for my impromptu visual inventory.  So after a quick dash around the kitchen, it was time to set out for some listless grocery shopping.  Had we stumbled upon a great new technique to simplify shopping?  Maybe not, but perhaps we could spend the grocery dollars a little more wisely than without the photos.

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We always need bottled water in AZ!

As we headed out in my husband’s pickup truck, there were a few minutes between home and Costco for glancing at the photos to see what might have been on a list if one actually was written.  Soon, we were walking up and down the Costco aisles filling the cart.  Believe it or not, the “listless method” actually worked well.  During those moments of matrimonial debate about what we should buy, a photo became the final judge.  Why had this not occurred to me before?  There is nothing like virtually taking the kitchen along to remove uncertainty.  In one instance, mustard was at issue, but the picture of an unopened bottle on the shelf solved the question quite nicely.

While it is unlikely list writing will stop completely at our house, perhaps once in a while I will pull out this newly minted approach when time to plan is at a premium.  I can count on the perfect recall of my digital record in those moments when recall by my lupus challenged memory cannot be trusted.  We will put this idea on the “one more use for a cellphone” list!

Lupus and the recurring visit of the sloth

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Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

Sleep/Rest Goals

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

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!”

Lupus, Christmas shopping and wishing for bags with wheels!

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Photo Attribution: By Pedro from Album, The Wanderings of Jeremiah, “Pack Mule in the Sanctuary Trek”

Somewhere along the way through the second major bout of Christmas shopping, a bright idea popped up, inspired by my second shopping trip of the season without a pack mule (aka, willing family member) to go along and carry my bags.  Where did reason and sanity go?  What would cause a gal like me with lupus arthritis to walk the mall for four hours shopping alone?

Between Penny’s and Dillard’s, while still only carrying 2 heavy bags, my memory cleared about why Kohl’s is my favorite place to shop for “stuff.”  They have shopping carts!  As my number of bags increased from store to store, so did their weight!  Pretty soon I was wishing I could just pile them on a skate board and pull the contraption behind me with a rope.  Where were simple, primitive wheels when I needed them?

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We are still carrying our water, today!

I mused as I trudged along through the mall quietly humming Christmas carols to myself.  There is nothing civilized about being a beast of burden bearing all my heavy packages.  It seems I remember learning in my childhood history class that being civilized meant people didn’t have to lug heavy stuff by hand from place to place like human pack mules

I paused to stop and think about it for a moment, while I set down my bags to rest and reposition!

Civilization – that means no carrying water and no carrying heavy items for miles to just to get them home.  Yet, how is it that we buy our water in bottles and have to lift and carry it home in gallons or cases of small bottles?  I thought we were supposed to have clean, safe water running through the pipes in our homes.  How is it that we drive to a place to shop where we have to carry everything for a mile or two, to and fro in the mall, before we can finally put it all in our car and take it home.

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Maybe carrying on my head would be an improvement!

For a few minutes, I even pondered whether it would be easier to carry all the bags if I put them in a large basket and balanced them on my head. I remembered seeing pictures of indigenous people from far away lands doing that.  By the time I was done shopping, I had a purse on one arm with two large bags, and three large bags in the other hand.  Fingers, wrists, elbows, shoulders all complained at the weight of their burden.

But, my musings made me smirk.  Were any of the other shoppers around me pondering the uncivilized aspects of Christmas shopping?  Probably not!

At one point near the end of my shopping trip, I briefly considered dragging the hefty bags on the ground, but decided that they might wear through and damage the gifts inside and chuckled at myself.  I thought the better of it, but must admit, the thought was temporarily tempting!

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Here I sit musing… it is almost Christmas!

So, done with my evening’s shopping, here I sit tonight at home, musing over my Bing search engine results for “shopping bag with wheels.”  I have learned that the same item I was wishing for can be purchased for anywhere from about $10 up to as much as one I saw for $500!  A modestly priced rolling shopping bag would seem to be a wise investment for someone like me with lupus!

Here are some examples of rolling shopping bags (and links to where I found them) that I am considering before my next major shopping trip:

  • Bag #1 – Looks big enough for today’s shopping trip
  • Bag #2 & Bag #3 – I saw this in purple and lots of other cool patterns, but it cost more than the others
  • Bag #4 – I liked the expandable feature and the price
  • Bag #5 – On E-Bay for a moderate price, and even comes with Butterflies!
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Bag #1 @ $20.00

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Bag #2 @ $25.00 to $35.00

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Bag #3 @ $25.00 to $35.00

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Bag #4 @ $10.00

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Bag # 5 – On E-Bay @ $23.00

Now, there are only a couple of shopping days left before Christmas, and I am getting excited about the prospect of time to spend with family to visit and reflect together on the true meaning of Christmas.

A couple more stocking stuffers to buy, gifts to wrap, the house to clean and goodies to prepare… I can hardly wait, Christmas is in the air!

Lupus and Getting into the Spirit of a Christmas Shopping Safari

Today was hair day!

Today was hair day, and there was a two-part plan!  First, it was time once again for the every eight week ritual of shampooing, hair dye, scissors, a blow out and great conversation during the session of hairdo taming and transformation.  Despite lupus and the handfuls of hair in the drain after every shower, there is a lot of thick hair left for the stylist to work with, arguably a lot more even than most people without lupus.

So, because of all that over abundant hair, there is a lot to dye, cut and dry. Time in the salon usually is measured by half-days and not just a couple of hours, but always at least three hours.  It takes a patient hairdresser like Rosa to handle the work diligently, especially after our recent shift to thicker oil-based hair dye.  It takes longer and requires smaller sections of hair for coloring the roots properly.

Manicure recovery time!

Today, since it was Christmas week, the hair appointment stretched on into a visit the nail tech Stephanie. Pulling out a personal bottle of shimmering red polish from my purse, and requesting a basic manicure and polish change to replace chipping remnants of last week’s manicure, salon time extended yet another hour.

This was nice!  Aching knuckles were soothed by a soak in warm water, followed by a gentle hand massage (by far, the best part of any manicure.)

Emerging from the salon into the adjacent department store, it was now time for part two!  Justifying browsing through the dress section with the need to allow polish to dry and cure before driving home, then set out on foot in the opposite direction from the parking lot.  A safari adventure had just begun, venturing out into the wilderness of a  mall at Christmas!

More than two arms could hold

There were restless natives everywhere, searching through dense racks of hanging garments  Soon, the idea to finish Christmas shopping pulled me on through uncharted expanses of the wilds of sale ridden shops and kiosks.  The natives scurried to and fro every direction around my path, carrying burdens and parcels to unknown destinations and homes.

Finally reaching the oasis of Macy’s department store, soon all the sought after fruits of diligent foraging were added to my sacks.

Eventually, the weight nearly exceeded the load two arms could hold, and with one sack in each hand, they were slung over each shoulder and carried the remaining part of the journey much more comfortably in double back-pack style.  Lupus arthritis began to pull and weigh down each step, and soon feet were dragging along in a weary, exhausted cadence.

Oh no!  The painful realization hit that my car was parked at the complete other end of the mall!  A series of slow deliberate steps led all the way back to the salon and then the car.  It seemed like it took forever.

Safari was over, the desired trophies all stowed in the trunk, and a weary wanderer seated safely in her little car, headed home to a waiting husband and easy chair.

Lupus adventures of a rain-washed garden morning

Gentle rain fell in the night

Gentle rain fell all night

Outside gentle rain fell steadily all night long, playing its soft mumbling music as lupus neuropathy and sleeplessness led to a first cup of decaf tea. Soon, the cup was cool and empty, and in the dark chill of night, it’s comfort and warming gone.

More cups followed in a cycle of comfort and cooling until the counting was lost and the morning was nearing. Sitting alone on the counter, a white saucer held a half-dozen soggy tea bags and a single spoon.  Then, exhaustion overwhelmed and sleep was at last possible.  Many long days filled with many concerns had also weighed heavily on a mind much too troubled with the cares of life.  Added to lupus and it’s challenges, stress and auto-immunity had taken their toll.  But, at last, there was sleep.

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Soaked grass glistened

A few short hours later, morning came especially hard.  But the outside called, and the yard was unusually fresh and scrubbed by the evening’s showers.  Soaked ground glistened, and the moist lawn was saturated.  The air was crisp, moist and fresh, and filled with aroma of damp leaves and soil.  A chorus of giddy birds filled the cool morning air with vibrant chatter, as their song rose in the peaceful freshness of the morning.

It seemed that for a few moments, time stopped for me to briefly to experience the pleasure of a perfect, peace-filled instant. Gently slipping into the porch swing, leaning back and inhaling deeply, my eye lids closed so all my senses could taste and drink in the delightful morning.  If ever there was true simple bliss in this humble mortal world, it can surely be in simple joy of a perfect restful pause such as this!

Creator

Mighty, caring Creator!

Soon rejuvenated beyond the fruits of my shortened slumber, thoughts of prayer and gratitude formed in my heart and mind.  Such rich blessings placed all around me by the hand of a mighty, caring Creator, just waiting for me to notice and appreciate.

Did He envision the comfort and encouragement such an instance like this would bring?  In His infinite knowledge, mercy and love did He plan for even this single moment’s small blessing?  Who can know a weary heart’s simplest, and also deepest needs.

The God of my undeserved salvation surely does!  In His matchless mercy and kindness, it would seem He planned for providing even simple joys like this!  Prayers of words alone were absolutely inadequate, as in my grateful heart deep emotions mingled silently with unspoken thoughts of thanks.

Chilled air rushed deeply in with each breath, filling the deepest corners of my lungs with coolness.  It seemed within a few brief seconds weariness vanished, and a deep calming rest supplemented for lack of true sleep. Lupus not withstanding, my body felt strong and restored!

The day called

The day ahead called urgently

But then, the day ahead now called urgently, ringing its intrusive alarm to pull me toward resuming thoughts of responsibilities and care.  It promised to be busy and full of much to manage and do, but I was now ready for the schedule ahead.

Perhaps these moments are the reason we build porches, manufacture patio tables and chairs, and spend hours and small fortunes on landscaping and lawns.  We surround ourselves with these iconic items, hoping for snippets of time like this to enjoy ourselves in their midst.  For these precious glimpses of perfectness we plan and prepare.

Lupus and believing in mornings...

Chorus of generations of birds

Yet, it would have been too easy to slip right past this common opportunity, to forget to stop, sit a spell, or savor the beauty of finding this moment of perfect peace.  This is a nearly eternal moment.

Time has not seemed to move one second between stop off points, between the strung out lifelong series of moments like this.  They all seem somehow connected, and that perhaps generations of birds have seamlessly continued the same choral masterpiece, falling long ago upon ears of a seven year-old girl — and who now sits on my porch as a grandma!

Fluttering

Fluttering from dandelion to dandelion

Moments like these are when all seems right with the world, and the soul of a little girl returns to my heart.  Decades — no, half a century — has passed and it seems like that the same little girl who sat in the cool brisk dampness of her mother’s backyard, reveling in the birdsong, moist grass, flowers and earthy fragrance, is here, now.

No time has passed at all, and perhaps she is really the same little girl sitting on this back porch today, slowly sipping the delights of this morning’s fresh washed yard.

She closes her eyes and finds the same pure enjoyment of morning as did the little girl of yesterday who sat wiggling her bare toes in the soothing wet grass of her mother’s breezy back yard, patiently watching a Monarch flutter and float from one dew-kissed dandelion to another.

Both girls closed their eyes and savored their precious gift of morning.

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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