One Patient's Positive Perspectives

Posts tagged ‘lupus awareness’

Lupus in a Victimless Life – Despite the Diagnosis

Series: Lupus in a Victimless Life

Having Lupus does not mean being a victim! Because Lupus is only one thing in an otherwise amazing life, it does not need to define us.  In the government law office where I work, we have a professional victim advocate who helps crime victims asset their rights through criminal court case against the person who hurt them.  One thing common to most victims is that they view themselves as victims, and often perceive themselves as powerless against the victimizer.

By looking at several aspects of lupus, this series will attempt to offer some ideas that may help with the effort to move away from a victim mentality, and toward a more positive perspective.  There is no question we cannot choose to have Lupus, but in some ways, we might even find some reasons to see some positives associated with Lupus!

First, consider the idea that becoming a victim is at least, in part, a matter of mindset and even a choice.

Despite the Lupus Diagnosis – an Overly Defensive Immune System

There is no cure for Lupus.  The treatment for Lupus has greatly improved over the past couple of decades, and especially since the new biologic medications such as Benlysta (Belimumab).

However at ease we become with the fact of our Lupus diagnosis, it remains an unwelcome companion traveling along with us in our life adventure.  Does that mean I should view myself as a victim?  No way!  There is a better way to view Lupus.

One afternoon, while sharing the podium and waiting to speak at a Lupus Foundation of America patient symposium, one of the world’s leading medical experts on lupus explained something very profound.   Her explanation provided a radically new perspective on Lupus.  A few minutes later, she explained the same concept to the room full of people.

She spoke about the most recent medical research that had produced a new understanding.   Lupus does not actually attack a Lupus patient, it actually overprotects them!

She went on to explain that immune systems can adapt and attack new and changing pathogens.  This is a testament to the fact that some people will always have auto immunity.  This capacity of the body to create antibodies against itself comes from the same aspect of our autoimmune system that can fight off new variants of viruses and bacteria.

Without the human body’s ability to develop new immune defenses, the human race would become extinct.  We owe our continued existence as a species to the fact that our immune systems, with their imperfections, can respond to either defend us against new threats, or unfortunately, become confused and try to overly defend us against our own cells mistakenly identified as threats.

This over-defensive response results in a wide array of auto-immune conditions, including Lupus.  She explained that this new information helped researchers understand why a certain segment of the population will certainly develop auto-immune responses.http://www.calumo.com/blog/wp-content/uploads/2012/10/forgot.png

After hearing this explanation, my view on the “why” of lupus radically changed.  Lupus is not really attacking me, Lupus is really my flawed immune system working overtime defending me against an imagined threat.  It is demonstrating what friend of mine describes as “being exceedingly helpful” to a fault.

It seems that every lupus patient is actually a living testament to the kindness and protective grace of God.  Because imperfect humans have dynamic changing immune systems, the human race is kept alive.   If not for this ability, each newly mutated germ could wipe out millions of people.   But, due to the same immune processes that cause Lupus, the human race continues to fight new germs and virus mutations as they arise, and therefore survives.

So, instead of seeing myself as a victim of Lupus, I see myself as overprotected by a misdirected, well-meaning immune system.  With Lupus and its known negatives, we still have defense against the microscopic threats that would otherwise kill us off.  So, accepting the downside of Lupus goes along with accepting the upside of a flawed, overactive, but still amazingly effective immune system.

By remembering that 99.9% of my body works properly, it is possible to choose to rejoice about everything else that still works, while acknowledging and accepting the imperfections of having Lupus.

 

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Lupus and tea at quarter past three

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.

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.

 

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.

Check Your Lupus Awareness and Play the Lupus Game at Lupus.org

Know Lupus Game My Score 100 PercentPlay the Know Lupus game online… and earn donations for answering awareness questions.

Try to get through both levels with 100%  It was fun, so check it out and spread the word to others to check out this fund lupus awareness activity at the Lupus Foundation of America site.

Play:  The Lupus Game and see if you can beat the challenge!

 

Lupus Awareness Month, Manicures and Missing Toenails

WP_20141129_15_16_32_Pro (1)Infusion day seemed a fitting event for experiencing Lupus Awareness Month with flare.  With the day spent in a circular junket around town, my little PT cruised from doctor to doctor for treatment for lingering problems from a recent car accident, and then to an annual Plaquenil eye check up.  With two hours to spare, I stopped in for manicure and a pedicure, and had an interesting discovery.Hair curls, manicures, pedicures but no lupus cures...

When the nail tech removed the bright purple nail polish, she noticed that the big toe nail had separated from the nail bed, but without any apparent reason such as fungus or infection.  It appears my big toe nail completely died, and the nail stopped growing several weeks ago.

The salon suggested that trauma during my late March trip and fall at the shopping mall killed the nail.  Perhaps while scuffing knees and straining the ankle, the nail bed base also sustained a hefty wallop on the edge of the cement step or the sidewalk.  The nail salon urged me to show my toe nail to the nurse while at the rheumatologist’s office for my monthly Benlysta infusion.

The verdict,  “Expect to lose the toe nail soon.”  Well, it seems the summer  fashion forecast lacks any nail vanity, and just in time for sandal season.  It will be interesting looking for closed toed summer shoes for a niece’s late July wedding.  What fun!

The infusion was the last planned stop of the full “medical” day.

infusion in handThe afternoon passed in the infusion chair with a monstrous accounting textbook perched on my lap and a fresh yellow highlighter gliding across the pages.

Eventually it was hard to pay attention to studying for my college class.  The friendly chatter of a couple of other patients getting RA infusions was more engaging than dwelling on the accounting formula, “Assets = Liabilities + Owner’s Equity”.  Without asking, it was clear they obviously didn’t want to chat about accounting!

No one does.  The reason is hard to pin down, but no one else seems to get very enthused about chatting about or otherwise dwelling on accounting theory, either!

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