One Patient's Positive Perspectives

Archive for the ‘auto-immune’ Category

Lupus, the inertia effect, and my valentine

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!

 

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Lupus in the light of a rainbow’s promise

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

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

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

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

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

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

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.

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!

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.

 

Bring me a lupus infusion with epidurals on the side

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!

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.

Separating Systemic Lupus from Traumatic Injuries

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Separating the Injury Claims

When a lupus patient has an auto accident, work comp injury, or some other personal injury where an accident insurance claim may be involved, sorting out treatment and claims can get pretty tricky.  Personal experience with these type of insurance claims provided some perspectives about working with doctors to sort out each new injury, and distinguish it from previous injuries and chronic illness.  The most recent auto accident that happened makes dealing with several issues fresh all over again!

Years ago, two different injuries resulted in insurance claims.  First, an auto accident followed a few weeks later by a fall down stairs at work.  Communication was the key to sorting out the differences between injuries.  Now, a recent auto accident was followed by a trip and fall at the shopping mall, and the same approach is needed once again.

Granted, with auto-immune illness, there are always many days with pain and discomfort, but new injuries seem to make coping even more difficult.   Day by day it has taken patience through the recovery, meanwhile remembering to ask God for the grace to be able to refrain from too much grumbling.  This too will pass, and the Bible says that the rain falls on everyone, so the storm becomes a little personal.  The new traumas also caused lupus to flare for several weeks.

Because of ongoing medical problems from chronic disease, communication with a doctor after a traumatic injury is very important.  Providing very complete, specific, and accurate information helped doctors and employers understand new symptoms and distinguish accident-related time off work.  Although several past accident injury claims were unfortunate, a few personal kernels of reality and wisdom emerged from the experiences.  While clearly not legal advice (which would be extremely unethical for this non-lawyer to provide), these personal observations may give some helpful insight to others patients with chronic illness who are facing a similar accidental injury situation.

A doctor will finally understand it is lupus

Communicate Well with Your Doctors

Three foundational, if not simplistic, realizations:

  1. Only medical problems clearly a result of the accident injury were covered by any of the claims.
  2. Unchanged pre-existing medical problems were not part of the injury insurance claims. (Obvious but worth saying)
  3. Flares of of pre-existing medical problems clearly triggered by the injury were able to be included in the claims, but only to the degree this diagnosis was included in medical records statements that supported how the autoimmune illness had worsened after the accidents, and because of the accidents.

Four conversations throughout various stages of recovery that it helped to chat with the doctor about:

  1. Asking what percent the doctor thought recovery from the first accident was reached, right after the second accident happened.  This helped establish a milestone in the treatment that we would work our way back toward during recovery from the second accident.
  2. Asking the doctor about how they thought injuries from the second accident were different than the first.  It helped when the doctor compared and contrasted between both injuries, and this gave clear information to use talking to both insurance companies.
  3. If the doctor doesn’t mention the idea, suggesting the concept to the doctor of a “window” in the recovery from the first accident while the second accident recovery was in progress.  This helped work with both insurance companies to make clear agreement about who was paying for what and when.  This helped the first insurance company know what to expect, and to realize they would be resuming responsibility for medical treatment costs after the recovery milestone was reached.
  4. Asking about total recovery in percentages after resuming the treatment just for the remaining first accident injuries, helped keep things straight with the insurance company.  Ongoing conversation about status of recovery with the doctor and claims adjuster helped keep everyone’s expectations and timelines clear.
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June 14th is Flag Day – Happy Birthday, Sis!

After having a couple of previous injuries, three serious car accidents, a work comp fall down stairs on the job, and two slip and fall injuries, personal experiences helped clarify the impact of an accident injury on overall lupus condition and general health.  It seems that if both adjusters and doctors had not been part of the conversations during recovery, proving diagnosis of increased lupus activity due to the traumatic injury would have been much harder.  It seemed better for everyone to be involved in ongoing discussion about the degree pre-accident health had be reached.

Of course, with lupus or any autoimmune disease, there is no “back to normal”, but with good communication, it can become clear when near “normal” health was regained.  Each day, no matter what it brings, is a glorious new day to be alive, what ever “normal” ends up being.

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