One Patient's Positive Perspectives

Posts tagged ‘fatigue’

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.

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