One Patient's Positive Perspectives

Posts tagged ‘flare’

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.

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!

Returning from East Coast Lupus Adventures

thDDSVWJG3After all the fun traveling from Arizona to Philadelphia for the 2015 GSK Lupus Blogger Summit, life and reality always have their return.  The high point was stepping off the plane 10 minutes earlier than expected and calling on the cell phone to find out my husband was already almost at the airport.  It is so nice when you have those moments that remind you that the one you miss, misses you, too!  After leaving the east coast at noon it was eight when a suitcase and tired girl slipped into the pickup truck.

Hungry and tired, we stopped off at a coffee shop for comfort food, pie and a coke, did some catching up.  A friend was working last night, and waited on our table, and with the sodas, placed a fresh red carnation table in front of me with the gentle explanation, “a flower for you.”  That was sweet and a welcoming thought after a long, flight weary day.  Tummies full and spirits a little revived, we were thankful to be together and soon ready for the last five-minute trip home.

Exhaustion overtook both of us, and after a quick shower blasted away the grime of taxicabs, airports, and airplanes, sleep arrived almost instantaneously.  The night passed nearly as quickly, ending abruptly with the welcome smell of fresh coffee on the bed table beside me.  Leaning on the pile of pillows he tossed my direction from the nearby bench, eyelids drooped off to moments of sleep and husband’s chatter between sips from a warm caffeine-filled mug.

th2C28Z9N0Unlike the night, morning moved very, very slowly, matched only by slow reflexes and even slower murky disconnected thoughts.  If ever there was a day to be tempted to call in sick with my lupus after a trip, this was it.  Unlike the sweltering sauna on the east coast, the Arizona desert morning was unexpectedly crisp and refreshing.  After kissing my husband goodbye in the driveway, the second cup of coffee led me through the house into the back yard’s fresh air and fragrant rose blossoms.

Delightfully, the cool morning breeze invigorated and refreshed, as deep draughts of blustery breeze wakened a sleepy set of lungs, slapping fresh life into the lupus fogged gal walking around the yard in my slippers!  The day began to look suddenly promising and worthy of pursuit.  The refrain actually passed over astonished lips, “Oh, what a beautiful morning!”  What a blessing to be home in my back yard!

Quickly gathering all the loose ends of hair, clothing, keys and a sack lunch, every thing seemed to tumble to the floor as a startling reminder CNS lupus might be a little flared from exertion and travel.  The reality of lupus limitations has a sneaky way of keeping a gal humble.

The commute drive was executed with extra care and attention, followed by a couple of conversations at work with obvious moments of difficult enunciation.  Mild lingering CNS difficulty lasted through mid afternoon, but finally the fog burned away completely.  Eventually, the morning song continued into later afternoon with, “Oh, what a beautiful day!”

Lupus adventures in accidental forgiveness at the side of the road

6fa91cc3b80f7a86a82d5eb745d50704

Softening that first impulse… Stop, breathe, think and pray!

Accidents happen!  For emotional and spiritual health, it is important after a traumatic injury to start by sorting out emotions and clarify the difference between fault and malice.  If someone was at fault due to negligent, careless, or otherwise the unintentional actions causing an injury, for our own health and peace of mind we should try to forgive them. They did not mean to cause hurt, as there was no malice in their actions.

thEHW97T5I

Admitting responsibility

We should not confuse forgiveness with the need to hold others responsible for the results of their actions, but we should understand we will only hurt our own heart and spirit by rehearsing and feeding anger and resentment toward someone who caused our injury.  Imperfect humans cause accidents, and we should see them as simply that.  Imperfect.  Human.

Amazingly and unexpectedly, healing began right at the scene of a recent accident, when the man who caused it stood there by the side of the road, holding out his hand with regret on his face.  Hands were shaken and the lament in his eyes was clearly genuine, his words of apology were real, and his full acceptance of fault meant only one thing.  He was concerned with my wellbeing, took responsibility for his actions, and deserved nothing short of immediate forgiveness.

Toppbild-handshake-Mostphotos-fri-252622-man-and-woman-shaking-hands-with-path

Expressing a response of kindness

Thanking him for his integrity and sincere apology, it was somehow easy to  shake his hand and respond with a message of kindness.  Agreeing the insurance companies would work out the financial issues, our clear understanding was that the gentleman was clearly at fault.  I felt compelled to assure him of the absence of resentment or anger toward him.

As we shook hands again upon leaving, our polite agreement was that it was just an accident, and that it had happened because we are imperfect and make mistakes.  It was a heavy, bumper-to-bumper rush-hour traffic jam, and we were grateful only the two of us were involved.  Accepting this perspective on the situation helped immediately dismiss strong negative emotions and shift attention to thankfulness for the good aspects of the otherwise generally negative experience.  Considering that we both walked away in “one piece”, no one else was hurt, and we amicably communicated at the side of the highway, we had much to be thankful for!

black-butterfly-photography-pretty-road-Favim.com-319704

Bright spot in memory of accident

In the midst of the early pain of injuries, the gentle human connection with the other driver remains now a little glimmering bright spot in memories of the traumatic experience.

Sometimes we feel justified in our anger, but we are not forced to exercise that “right”.  If someone causes injury for reasons such as mal intent, criminal negligence such as drunk driving, over aggressive driving, or road rage, it might still behoove us to show charity of heart and pity them for their poor self-control and lack of wisdom, and not focus the inwardly destructive potency of hatred upon them.

Many times these infractions ultimately put the erring doer in jail, with severe legal punishment, fines, and restitution.  We should choose to let that be enough.  God’s important message to us in the Bible on this issue gives us that better perspective.  “Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, vengeance is mine; I will repay, saith the Lord. Therefore if thine enemy hunger, feed him; if he thirst, give him drink… be not overcome of evil, but overcome evil with good.” Romans 12: 19-20.  The negative emotion of resentment hurts the one who hates more than it affects the object of such feelings.  Just as forgiveness is emotionally and spiritually healing and freeing, resentment and hatred bring a painful grip that hurts and damages the hater more that the hated.

thDRVL3I34

How many times must I forgive?

Jesus said we should forgive our brother that hurts or wrongs us, not only seven times like an inquirer had suggested to Him, but instead we should forgive them “seventy times seven”.  That comes to 440 times!  It seems pretty clear that He did not infer that we should stop forgiving the 441st time someone wrongs us, but perhaps by then we will have well exercised our ability to forgive with reasonable success.

thL96KOAO8While it is impossible to count the number of other people throughout time who have ever lived on the face of the earth, Jesus bore the sins of all of us in His body on the cross, that He might bring us to God.  He offers lasting forgiveness to us, not at the side of the road, but at the foot of the cross.  If we will accept his sacrifice there for our own sins, and receive his offer of love, forgiveness, and eternal life, we can walk away spiritually healed and whole.  The apostle Paul explained, “for the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord” Romans 3:23.

The body will heal, although lupus may flare after trauma, that will pass in time.  More important than the healing of our body, or any flares of chronic illness such as lupus triggered by trauma or stress, is the healing of our heart, soul and spirit.  Sinners like me who are saved by God’s gracious undeserved kindness, can choose to extend the healing of simple forgiveness to fellow sinners who happen to collide with them on the roadway of life.  With God’s help, I can, too!

Forgiveness does not happen by accident, but rather it is a choice.  I have made mine, and as a result, am well on the road back to health!

Lupus and the adventure of finally finishing something

Senior year of high school

Finishing Something!

Finishing something

There is no feeling quite like setting out on an adventure to finish something that has been waiting a very long time to be completed. So it was this week. After a long thirty-four year interruption, there was finally enough health, time and money to return to college to finish a nearly-complete bachelors degree.  Thirty-four years was time enough to equal more than half of a life, filled with countless challenges and blessings.  Yet, this was the one undone endeavor that still carried a sting of lament.  After investing four years at two colleges, the final semester of college was never completed.

Over the intervening years, a lot of stuff happened!  Enough years had passed to,

  • Love a husband more than a third of a century
  • Work long enough in a career to earn a pension and start to think about retirement
  • Conquer great financial hardship and recover, and go on to own two homes
  • Face the threat of imminent death three times
  • Raise two children and watch them graduate from high school and college
  • Watch children marry and enjoy four grandchildren
  • Lose one parent suddenly and lose the other slowly to dementia

Why the long wait?

Paying medical bills

Paying medical bills

Why did it take so long to get to this point? In a couple of words, life and lupus got in the way!

Several times a target date was set and never worked out.  First, after taking a semester off college to get married, a baby [note, the pill does not always work!] was soon on the way and a prayerful decision reached that my husband needed to finish college first since we had started a family who needed nurturing.  We assumed my degree would quickly follow, as soon as toddlers went off to school.  But, when severe asthma shattered those plans my husband’s medical bills equaled enough to pay off a house (without ever having a house to show for it.)  Somehow we paid all the bills, but it took seven years, and thankfully, without declaring bankruptcy.  It was a small price to pay, and we were grateful, because the doctors saved his life!

Sober concerns about my husband’s long-term survival made him urge me to find a job that could support us right away as well prepare me financially for the very real possibility of losing him.  So, this meant going to work without finishing the degree.  Even then, Lupus was lurking around in the shadows, but still had not introduced itself properly.

As kids went to school, their dad was home, through kindergarten and several years along.  This meant my job was the sole support for the four of us for a while.  It was a great blessing to see God’s wonderful provision meeting our financial needs through my new career as a paralegal trainee, over the next three decades promoting through the law office ranks to government law office management.  Eventually breakthroughs in asthma medications stabilized his health, but by then our children were a little older and my career was well-established.

Trading places!

Photo Lupus Adventurer's Daughter-In-Law

Photo by Lupus Adventurer’s Daughter-In-Law

Then, we traded places.  lupus came out of hiding while he regained health and became the strong one.  As children turned into teenagers, lupus was in full flare with arthritis, fatigue, rashes, mouth ulcers and deep gnawing bone pain.  Many nights spent in a chair rocking back and forth was sometimes the only tolerable way to pass through those early morning watches.

Then, while grieving my mother’s death, opportunistic lupus rampaged through my body, targeting my central nervous system and muddying memory, coordination, speech and analytical thinking.  That was the year lupus moved in like an unwelcome intruder, threatening my career and nearly completely disabling me.  When abdominal artery ruptured, nearly taking my life, while our kids struggled with a mom who got confused, forgot things and was struggling to stay afloat.  When there wasn’t enough of mom to go around, there was also complete peace that husband and children were the priority that came first.  College was never even a consideration because of time and money.

Finding an open door

Two important questions

It did not make sense to put personal goals first unless it made sense to heart, budget and what mattered the most in the depths of my heart.  While wishing I could finish college, other commitments and priorities mattered far more. Character and patience required waiting until a right combination of physical health and strength, priorities and schedule, and financial resources and wisdom would (ever) add up an open door.  A final decision also required defensible answers to two important questions, especially this late in the game:

  • Would there be enough return on the investment to make spending the money a wise financial investment?
  • Would the degree contribute enough to reaching future goals to merit spending the necessary time and energy?

Regardless how long it took to get here, there are no complaints about the wait. It was always clear when God used events to deliver a very personal message that not all moms should be “stay home” moms, and not all moms are supposed to get their college degrees before their kids do!  Sometimes, God calls a few of us down a different, sometimes difficult path to help us understand His love and care through the struggles.  Now, it makes sense to spend the time and money on getting the degree completed. It will boost earning power and open up a wider arrange of choices for a meaningful semi-retirement second career.

Back on campus!

So, this week it was thrilling (and a little nerve rattling) to become a college student once again.  On-campus classes are held one night each week for the next eighteen months as part of the degree completion program. Someday husband, daughter and son — who all finished their college degrees (daughter has two) — will assemble to watch mom put on cap and gown and cross the stage to receive her diploma.  This is the time to make it happen, lupus and life not withstanding!

2014 in review – Lupus Adventures Between the Lines

WordPress.com prepared a 2014 annual report for Lupus, the Adventure Between the Lines…

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 60,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 22 sold-out performances for that many people to see it.

Click here to see the complete report.

Thank you!

Thanks for reading!

A very special thank you goes out to regular readers and other visitors who have shared their lupus adventures, challenges, comments, emails and various thoughts here.  Every reader contribution has made a difference to me, and other readers have expressed how comments often strike common threads with their own experiences.

2014 was a year of great personal ups and downs, including the difficult loss of my father on the evening of July 4th.  Amid the fireworks of Independence Day, after suffering with Alzheimer’s for five years, my father had his own unique independence day of release from that very difficult struggle.

July was indeed the low point in being able to share my lupus adventures, as I struggled with grief and the needs of family and his affairs, writing was pushed aside.  Only one post was published during the month.  The many kind words and thoughts of condolence received in comments and emails from many of you were so appreciated!  You helped make a difference in my grief experience, encouraging and touching me greatly.

ELLENBIGTAB - WIN_20141206_002632

Thankful for each of you!

It is important to take this opportunity to stop and share thankfulness and gratefulness for being allowed to share this great lupus adventure with each of you!  My continued hopes and prayers are that my pondering and perspectives on lupus and its impacts will help you, too.

I have also been blessed to hear from those of you who expressed a common fellowship of faith in Christ, and appreciated you sharing your thoughts and experiences.

Whether your are a lupus patient or are impacted in some other way by lupus, I am deeply humbled and honored that you have visited here and shared precious moments of your own journey with me!  May 2015 be a year of many blessings and few flares for each of us.

%d bloggers like this: