One Patient's Positive Perspectives

Posts tagged ‘Autoimmune disease’

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

 

 

 

Advertisements

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.

 

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.

cc

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

WP_20160423_12_13_26_Pro

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.

WP_20160423_12_14_32_Rich

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

sleepy sloth.htm

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

th (4)

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

insurance-claim-form

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.
cc

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.

%d bloggers like this: