One Patient's Positive Perspectives

thEGJELUGJAlthough true for everyone, every lupus patient personally understands this truth: a body at rest tends to stay at rest, and a body in motion tends to stay in motion.  The physical science behind the laws of inertia may not be exactly simple, but they are clearly understood by lupus patients.  A sedentary lifestyle is effortlessly easy to maintain, while changing from a body in at rest to one in motion can be an incredible challenge.  Looking back at the past two years of concerted effort keeping college studies moving with great inertia, it seems other areas of life hopelessly succumbed to a lack of motion!

bathroom scaleWith the accelerated rate of scholarly efforts came an equal and opposite effect on physical exercise and healthy home-cooked meals.  Weighing a full twenty pounds more than two years ago, the lack of inertia impacts several rooms in the house: the bathroom scale registers twenty pounds more, clothes in the closet are two sizes larger, and food in the kitchen lasts only half as long on the shelf.  Too much fast food in too much of a hurry did not help this high calorie, nearly exercise-less existence.  Alas, exercise and healthy meal planning take time.  More time than there was to spend while attending college.

Energy-conserving dinner prep for lupus patients!In efforts to reclaim a healthier lifestyle, a newly restored relationship with the kitchen has been growing again.  The smell of real food in the house, heavy on light, fresh, whole foods and light on the oil, sugar, salt and other forbidden non-fruits of the grocery store processed food isles.  We are also rediscovering the purpose of the dining room table, and the fine art of dinner conversation.  This certainly is a vast improvement to fast food distractingly munched under gaze of a watching computer screen’s light.

As we look at tomorrow’s Valentine’s Day, it was a pleasure to have the time this year to thoughtfully contemplate and purchase a card and small gift bag full of my sweetheart’s favorite surprises, without simultaneously feeling a frantic pressure from struggling with a choice between study and shopping.  Over these two years, he has been an amazing encourager and support, as he single-handedly held down the home front by shopping, cooking, cleaning, and (yes!) doing laundry. College would have been impossible without him!

valentines-day-love-heart-romantic-heart-butterflyA gift bag awaits the morning in the fridge, positioned right in front of the coffee creamer on the shelf.  When he gets the cream to pour into my cup of coffee, there it will be for him waiting to greet him with a, “Happy Valentine’s Day” for me, while I am still struggling in bed with the fog of morning lupus brain.  Every morning he wakes me with a cup of coffee in bed.  This man deserves some very special love and appreciation!

 

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.

Question Mark Key on Computer Keyboard

Lupus and tea at quarter past three

Hugged by a bubble of dim computer light, the keyboard and tablet cast a faint glow over the blankets. While sleep eludes, night thoughts invade the quiet darkness.  He slumbers beside as his slow baritone rumbling comfortingly quivers throughout the room.  Sleepless nights seem merciless when rest seems needed most!  Lingering weariness from a busy day and goosebumps from a cool winter chill disrupt efforts to relax.  Drawing the soft comforter up is warming and eases the chill, but still fails to bring on sleep.

A recent bout of insomnia has made ordinarily foggy lupus mornings more difficult.  Perhaps there are multiple culprits to sleep deprivation.  After spending the last couple of years in college, writing research papers well into the night has destroyed circadian rhythms and perhaps deregulated sensitive endocrine balances.  To reach the arduous goal of earning a late-life college degree, unfortunately, sleep became secondary to prescribed bed times, and school work took precedence.  Life has not yet fully adjusted to new patterns after recently finishing college.  Graduation just before the holidays blended into the normal seasonal stress and distractions.

Only 10 days left until Christmas!

After graduation, there were ten days until Christmas, so the few remaining nights were feverishly used for shopping, wrapping, decorating, and cooking.  There has still been no post-graduation let down.  Immediately after New Years, we moved our bedroom furniture into our home office, and began the reconstruction project in the master bedroom suite.  Dust, noise, contractors, and morphing levels and states of household chaos have permeated all the other rooms in the house.  This has affected any sense of normalcy, and perhaps sets life on just enough edge to rob me of rest in the night.

Surging peripheral neuropathy pain

A surge in nightly onset of peripheral neuropathy pain in legs and feet has contributed negatively to attempted sleep outcomes.  Recently careful timing of nighttime Gabapentin to equalize between twice daily doses is helping reduce the frequency and severity of nightly symptoms.  When the thirteenth or fourteenth hour arrives after morning doses, it is more likely that neuropathy symptoms will set in.  If medications wait until after the onset, it takes over an hour after a new dose to get any relief, and often pain medications are required to quiet the pain enough to allow sleep.  Overall exhaustion increases the likelihood of the this sleep enemy, so this might be a cause, too.

Eliminating trough effect

Eliminating steroid trough effect

Perhaps the split dosing of prednisone between morning an evening might also contribute some to the problem.  A few months ago, quite by accident, we discovered that adjusting daily prednisone doses from single morning 7 milligrams to split dosing of four milligrams at nights and three in the morning immensely improved morning mental clarity.  The Rheumatologist described the positive result as a reduction in “trough effect”, or more simply put, a lack of prednisone dropping to very low blood levels in the night.  A potential drawback impacting sleep may be increased nighttime steroid levels.  Even so, because the net morning result is so much better than it was with single dosing, despite any negative influences in reduced nightly REM sleep, split prednisone dosing was still well worth the risk of any lost rest.

Split dosing steroids not for everyone!

Finally, this spilt dosing is not good for everyone, and in fact, is usually medically discouraged for good reason!  While ordinary medical wisdom recommends full daily steroid doses are best given in the morning to better replicate normal endocrine activity, this was not a concern in my situation.  Since we no longer have any realistic hope that my normal cortisol production will ever resume, after years of failed trials to do it, normal precautions that protect future steroid production were meaningless.  However, in patients that still have some normal cortisol production, morning dosing is recommended to reduce potential suppression of adrenal production of natural cortisol.  But, for those who are completely steroid dependent, the medical wisdom notably shifts to equalizing blood levels throughout the day.  So, split dosing in this case makes perfect sense.

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Wrapped in the promise of dreams

This quickly aging new year is a fleeting annual opportunity for new beginnings.  So, speaking like a seasoned procrastinator who waits until tomorrow to start getting more sleep, here I sit in the night lamenting my loss of it.  I am determined to start earnestly seeking this elusive commodity of sleep.  So, after reaching the bottom of a third cup of decaf tea, my thoughts of sleeplessness finally give way to sagging eyelids.  Slipping the computer onto the bed table and sinking under the warm blankets, darkness finally wraps around me with the promise of dreams.

My Cheering Section!

The Whole Cheering Section!

Finally done!  A two-year long scholastic adventure closed with long-awaited pomp, circumstance, and enthusiastic celebration of family and friends.  It is finished, and the Lupus Adventurer is returning to her blogging home, after sojourning long in the land of learning.  Graduation came as a sweet finish to a college degree put on hold for over thirty-five years.  Returning to college after a 34 year gap was a deeply fulfilling, challenging, and mentally invigorating experience.  Concern that the risk of lupus flares might increase with the added stress of school studies fueled some real trepidation at the beginning, and could have been a valid reason not to try.  However, after being on Benlysta infusions for several years, my health had never been more stable.

Over the years our children grew up, married, and five beautiful grandchildren graced our lives.  Finally health, family needs, and personal priorities were in a place where it made sense.  Personal values put the needs of children and family first, so with great peace of heart college held lowest priority.  Just like many other lupus patients, the years are peppered with various milestone health challenges.  Always thankful for the education received over four years of attending college, a lingering desire to tie a bow on the unfinished degree never lapsed.

th2C28Z9N0With all the credits aging quickly, after ten years had passed without going back, traditional college degree programs required starting all over again.  Until schools began offering degree completion programs, there was little opportunity to consider reviving a quiet personal dream to finish it.  By the time our children were in school, my career was in full stride and lupus was flaring as an unwelcome life companion.  Keeping  up with the demands of home front and work took daily doses of love from husband and family, and the abiding strength gifted though the daily grace and mercy of a walk with God.

With a husband’s support and encouragement from all the corners of life that mattered the most, it is finally done.  After deferring my desire to finish my college degree for many years due to the events and obstacles of life, choosing the priority of putting my husband and family first, and waiting contentedly upon God unless and until He showed me a time when it was right for me to do it.

So, I prayed my way through countless long nights of arduous study, and stretched my brain and heart to embrace and comprehend new ideas and understand new concepts.  Scores of papers were written, supported by hours and hours of academic research.  This was the type of college experience that made me better and my work, and helped me professionally grow.  My husband, family, friends, employer, and co-workers cheered me only continually.

Senior year of high school

College was harder work for me being a lupus patient in my late 50’s who works a full time in government management.  My sleep hours were often deprived, and the hours of study almost always went beyond midnight.  As a result, perhaps, there were some increased health challenges along the way.  But, now at age 59 it is clear that it was a deeply rejuvenating experience.  Study at night after my demanding day job, together with class time, reading text books, and writing innumerable papers were difficult at times.  During the second year of my studies, our son and his wife and family moved in with us and we spent a blessed year as a full household of nine.

Our five young grandchildren brought joyful love and laughter into our hearts, and they prayed for me and encouraged me daily with their hugs and kisses, warmth and smiles.  I felt like my cup of family love was overflowing and spilling out all around me – my heart was full of joy, despite the normal stresses and challenges of sharing our household.  We got to know and love our grandchildren even more deeply and intimately that was ever before possible, and so this will be an ongoing gift to all of our lives for years to come.

 

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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.

cactus butterfly black and white on jumping cactus

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!

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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.

 

Valle Luna Phoenix thEOGYSE51A recent “date night” found us sitting in a quiet booth while the waitress approached the table with a warm welcoming smile.  The Friday night dinner rush was over by our 8:30 arrival, and we had only waited a few minutes for our table.  Earlier, she assured us, was pretty zany at this local authentic Mexican restaurant we had all but forgotten about in recent years.

Tired some of our usual dinner spots, a return to the casual charm of this unpretentious eatery was long overdue.  The decor had not changed in the decade or two since our last visit, but it really didn’t need it.  Part of its southwest charm is the rustic feeling of being just over the border from Mexico, while really eating dinner right in the middle of Phoenix, more than a half day drive north of the border.

Valle Luna Phoenix BestWhile notably absent this evening, it seemed there might still be a faint echo of the mariachi band that had once strolled between the tables during dinner hour.  Amused while studying the menu for tummy friendly fare, a chuckle was stifled while considering my possible order.  Over the past few weeks, life had indeed served up a new menu of possibilities and adventures.

What would I like today with my lupus?  Well, how about a double dose of doctors, a lupus infusion, and a little Lumbar epidural on the side?  Seriously, the mild enchiladas, rice, and beans hit the spot quite nicely.  We enjoyed some quiet small talk over dinner while reviewing events of the day, and contemplated the long-awaited relief achieved by recent procedures that treated a nagging herniated disk.

Butterfly OrangeWith a total of three epidurals over the past few months, there was finally relief from the unwelcome companion of low back pain and leg muscle spasms.  After several months where the need for pain killers (tramadol) became increasingly frequent instead of episodic, it had become clear the chiropractic treatment we tried was woefully inadequate.  So, after visits to three different doctors there was a new personal record, as a little lupus treatment was sandwiched between some “minimally invasive” spine treatments.  Each epidural required a day off of work, sedation and a full day to rest and recoup.  With each of three treatments, the intense pain of sciatic leg cramps and low back pain subsided to more tolerable levels.

Mexican Valle Luna Phoenix thFDZH2OZYIt seems that Lupus alone is quite enough, but when other medical issues overtake a lupus patient, the combination of other medical difficulties and challenges can threaten to overwhelm even the strongest of souls.  It seems this is just the right season of life to be thankful for quiet lupus biomarkers, and be grateful for the blessings of relief from many months of intense pain.  Monthly Benlysta (belimumab) infusions have controlled lupus well.

Thankful to be out enjoying the “date”, and thankful for relief from pain, our Mexican fiesta, without the side dish of screaming pain was delicious!

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