Lupus and teaching an old dog new tricks

Teach an Old Dog New Tricks

I just fed my dog his dinner, and am reminded once again of the age-old adage says that “you cannot teach an old dog new tricks.”  Recently, I determined to test this decidedly negative behavioral theory.  As a result, the outcome encourages me in my own efforts toward building new healthful habits to help my battle against systemic lupus.  This adventure started with an annoyance that I determined had to be stopped, and ended with profoundly reformed behavior in my aging dog. I proved that even old dachshunds with greying noses can be retrained in their declining years, so there is still hope for me.

How old is that old dog?

Rudy is fifteen years old next month, and not a pup by anyone’s standards.  In the most conservative of “dog years” that makes him equal in age to an 80 year old person, and by many people’s standards he could be as old as 105.  You can’t tell him that, because he still thinks and tries to act youthful, exuberant and only recently ceased jumping waist-high to peer at approaching visitors through the window in the kitchen door. He still thinks he is a puppy, even though he can no longer jump up on our bed due to some doggie arthritis.

80 in Dog Years!

I miss seeing Rudy popping up and down, with his rust colored miniature long hair dachshund ears flopping up and down in mid-air as I unlocked the door each evening.  I greeted him with  the commentary, “jumping doggies”.  It was pretty cute behavior and lasted for well over a dozen years.  He is still decidedly enthusiastic about everything.

Perky behavior gone awry!

That same perky behavioral trait became a source of exasperating annoyance and began to wear on me.  At some point, it was not so cute any more.  My little dog began demonstrating some serious anti-social behavior, exacerbated after my daughter and her husband came to live with us.  He seemed ultra-motivated by the presence of four adults in the kitchen each evening, all gathering around the stove chatting socially as I finished cooking.  He didn’t like being ignored by the humans in his kitchen.

As dinner is just about ready to be served, many nights we stand around at the counter after I have put dinner on the plates to pray together before dispersing to sit in front of computers or televisions with our meal.  Other nights, we stand around and chat for a while while I finish, and then sit down at stools around the large kitchen counter and eat together.

Yelping and Flipping Bowls

Paws in our prayer time

Rudy began identifying this family gathering and prayer time as an excellent opportunity to get attention and remind us it was time for his dinner or for a water refill in his bowl.  His food sits at the base of the counter, just to the side of the stove area.  Each night he started yelping, barking, jumping and cavorting to get our attention, dancing around our feet, tripping us and creating chaos.  He would grab his bowl in his mouth and flip it on the tile floor, annoying us even more.  High volume and yapping kept escalating until one of us would finally raise our voice in exasperation and shout at him loud enough to get him to stop, “RUDY!”

After the outburst, the congenial chatter was disrupted, and a stressful sense of irritation was felt by all the humans in the room.  Yelling at Rudy made everyone on edge, and we had all succumbed to the temptation, pretty much taking turns.  Four adults had become victims and Rudy was the perpetrator!  Meanwhile, after disrupting our conversation and invoking our ire, Rudy would roll around on the floor wagging his tail in front of us in victory.  It wasn’t long before we were getting pretty fed up with the dog.  What could we do?

.

Theory: I am smarter than the dog!

I theorized that he felt rewarded by the intense attention he received after accomplishing his twisted anti-social goal to become the nightly focus.  This was clear when he often did not even eat the food we had put down to shut him up!  My sneaky little dog was pretty smart and had figured out how to make us notice him by acting out with bad behavior, much like a child, until he got our attention. Perhaps I should consider if there was a better way to meet his real little doggie need better.

Yelling at him simply didn’t work any better than it had with my strong-willed children.  Dachshunds are known for their stubbornness.  In fact, hollering fueled his (and my kids’) poor behavior more.  I knew I had to be smarter than the dog!  I pondered how to change the behavior of my old dog, and toyed with how to apply the proven concept of conditioned response to find a solution.  I wondered if it would it work at his age, or was he just too old to learn a “new trick?”

Control with Conditioned Response

I began interrupting his antics with verbal and visual hand commands to sit and then lay down and stay.  I consistently worked with him until he would finally respond each time and lay all the way down and stay in that place until fed.  Within just a few days he started connecting the reward of being fed or getting water with the sequence of first being made to sit in a specific position on the rug by his bowls.

I make him stay down and be quiet while I fill the bowl, and while holding it in my hand, I squat down and pat him on the head and pet him, telling him softly how much better I like him being such a good dog.  Any time he would get up from “the position” before I was done, I would stop getting him food and go back to doing something else, reminding him meanwhile to return to the “please feed me pose” using the visual command of pointing down, while saying “down.”  Once he would resume the proper pose, I would resume getting the food.

When I have his food, I signal him to stay down until I place the bowl on the floor and say “okay, go ahead.”  I stuck to this training consistently, and within a couple of days he got the idea, and within a week he had learned it.  It has been a month now, and he is consistently behaving properly in the kitchen.  If he starts his earlier antics, a hand gesture stops him and he grudgingly (but quietly) assumes “the pose” and waits for me.

Learned New Tricks

The old dog learned new tricks

As a result, he is getting positive attention and affection, on my terms instead of getting yelled at.  He has learned to quietly sit in the “feed me pose” on his own, without being told to so.  Each time, we reward him with the pat on the head, kind words and then food.  Also, we have let him know it does not work any other time.  He doesn’t get to use it to push our buttons to make us do things like give him treats.  This “communication” is only to tell us he wants food or water, and only works twice a day, at normal doggie meal times.

The problem was solved.  We again have control of our pre-dinner chat time, and my old dog has again accepted that he will not be rewarded for trying to be an annoying center of attention.  I won!  I am smarter than my dog! Hurray! (Was there a doubt?)

What about me?

Next, I began to correlate what I had learned from Rudy, and started to think about myself and the need to consistently exercise, and to lose about 25 pounds.  I thought to myself, if my very old dog can learn a new positive behavior at this advanced stage of his life, what about me?  At 55 is it too late to get weight off and drop a couple of dress sizes?  In the last year I have gained 10 more pounds.  I don’t want to do that annually, or very soon I will have  grave health troubles!

I am inspired with new goal to drop to 155 while I am still 55.  I need to comply with my doctor’s exercise goals, and eat the healthy diet that used to be my normal eating patterns before the kids moved in with us.  I have most of a year left to  develop the self-discipline, healthier eating habits and meet my exercise and weight loss goals.

After all, if my old dog Rudy can change his behavior in a week, surely I can succeed in the adventure of accomplishing my exercise and weight loss goal this year!

Surely, I am smarter than my dog!

Lupus and Benlysta Infusions – After 18 months

18 Months of Benlysta

This afternoon marked the 18th month of Benlysta infusions for my Systemic Lupus.  In August, 2011, I started Benlysta infusions trying to control the rising level of my lupus activity.  A little over a year earlier, I had started coming out of a biologic drug induced five-year near remission.  Today, my lupus is well moderated and has quieted greatly.  Neither my doctor nor I am calling it remission, but “well-controlled” is an apt description of my lupus now.

During the year before  starting Benlysta, my CNS lupus, arthritis and other systemic symptoms had been on the constant rise, things were getting pretty rough, and my ability to continue working was threatened.  My symptoms and cognitive disruption from CNS involvement were worsening.  However, I had long before failed traditional chemotherapy drugs sometimes used for lupus.  My insurance had refused to pay for the biologic drug (Rituxan) that had previously put me into extended remission (the details about Rituxan appeals are best left for another discussion and are mentioned in other earlier posts.)

Before Benlysta…

Two Years Before Benlysta

Two years before starting Benlysta, I had scheduled a trip to the San Francisco Bay Area to visit my dad.  This was the beginning of my journey out of remission and toward Benlysta.

My father had lived alone for almost a dozen years after the sudden passing of my mother.  He had managed pretty well on his own, with a few periodic check-ins and refresher courses from me to reinforce the month-long “Home Economics 101″ training I put him through twelve years earlier.  For years he had managed to live a respectable widower’s existence, fulfilling his personal goal to keep the neighborhood widows at bay.   But, he knew something was wrong and resigned his post as treasurer of the local American Legion chapter because he was suddenly making math errors in his reports.

Sonoma, CA Wine Country

About this time, I had registered to attend a legal conference north of the Bay Area in the Sonoma wine country for two days of educational meetings.  I coordinated plans to spend several days before and after the conference visiting with my dad.  I was helping him make final plans to move to Arizona and put his house on the market, and he had seen a lawyer to set up my role as power-of-attorney for his affairs.  He had fallen a couple of times and he realized the wisdom of being nearer to family.  Little did we know at first that he would soon have the rapid onset of dementia overtaking him, and that the math errors and a couple of falls were just the beginning.

Just before I was supposed to leave for San Francisco, I called my dad about him picking me up at the subway vs. taking a cab to his house.  To my surprise, he seemed nearly catatonic when I spoke with him, drifting in and out of consciousness.  During his few lucid moments, I learned he had fallen again, and had since been sitting in his recliner for at least four days unable to get up.  He had not eaten nor drank anything, and from his description of his symptoms, I correctly deduced he was suffering confusion caused by kidney infection and failure.  He might not have survived had I not called him when I did.  One of my sisters was able to get to him immediately and she oversaw getting him to the hospital.

Two months flying between AZ & CA…

Two Months of Travel

By the time I got to California, he had been hospitalized and was receiving life-saving treatment.   After a week of comprehensive care and testing he received a clear dementia diagnosis.  He would not be allowed to ever return to his home again, and would from then on need around-the-clock oversight and some ongoing nursing support.  He spent the next eight weeks in aggressive physical therapy, learning to help get himself in and out of a wheelchair while regaining enough strength to get around using a walker.  Only then I could put him on a plane to relocate to Arizona.

During those two months commuting between Phoenix and San Francisco I seemed to do fine, traveling back and forth every week to spend three or four days in Arizona alternating with three or four days in California.  I systematically cleaned out and packed up each room in my dad’s house, while meeting with realtors, estate sale shops, lawn care people and scores of doctors.  I also was forced to undergo a crash course in elder law, medicare, social security and pension benefits!

Flying back and forth took some toll on me, but buttressed by intercessory prayer from family and friends, my lupus seemed to stay quiet.  I secured an appropriate place in assisted living facility for dad near my Phoenix home, sold his house, and brought him back to Arizona with me in time for the holidays.

View from Infusion Center

Weariness, Insurance Appeals & Giving Up

The next few months were very rocky and wearisome, as it soon became clear my father would need a higher level of care than assisted living.  After months of middle of the night calls from his caregivers, and 3:00 a.m. trips to his residence facility (because they were unable to quiet and calm his recurring agitation) I was wearing out.   Dad’s worsening dementia and my growing sleep deprivation and increased stress took a big toll on my health.  Although we eventually got him into a wonderful dementia/Alzheimer’s care facility perfect for his needs, and my horrible extended stress about dad’s situation was finally relieved, I paid a great physical price.

I was steadily moving out of the long stretch of remission I had enjoyed for so many years, and was rushing headlong into a major unabated lupus flare.

Surrender

A year after my dad had been first hospitalized in California, my rheumatologist and I starting trying to get insurance approval for Rituxan again, since the clinical trial I had participated in years before had ended.  Before entering that trial years earlier, lupus began attacking my liver and I failed treatment with Methotrexate and with Imuran, a drug commonly used to treat lupus rare cases of lupus liver involvement.  Failure of standard treatments qualified me to take part in the phase three tests of Rituxan for lupus.

Now, in this new post-remission flare, plaquenil and steroids were all I could take for my worsening lupus.  Without Rituxan approval, my doctor and I were in a quandary.

Infusion Center Nurses

What Next?  FDA Approval of Benlysta for Lupus!

I was seriously asking God what to do! Retire with hopes lupus would quiet down?  Go back to liver toxic chemotherapy drugs?

I didn’t have any answers for my worsening lupus, and for the second time in my life, I was at a place where I was considering a medical disability retirement.  I had once before narrowly skirted past this point after Rituxan turned my lupus around for so long.  Since my health insurance refused after several appeals to pay for Rituxan, my doctor and I had finally given up.

Infusion Center

Within a few weeks of our “white flag,” Benlysta, the first new drug for lupus in over 50 years, was approved by the FDA for lupus in March 2011.  Everyone in the lupus community was in an uproar about the great news.

I was quietly hoping that I might be able to get approval for Benlysta, but after the failed year-long battle with underwriters and medical insurance directors over the earlier biologic drug, I was not confident it would be possible.  The published annual price for Benlysta was equal to the drug my insurance had adamantly denied to cover!

After a brief period of discussion with my doctor and an amazingly prompt insurance approval, a mere five months after giving up on Rituxan appeals, I was soon set to begin receiving Benlysta. Now, eighteen months into Benlysta treatments, my health is certainly not perfect – lupus is still there and my lupus neuropathy is somewhat troublesome – but, overall I am clearly healthier than before.

Lupus & Benlysta Now

Lupus & Benlysta Now

My overall stamina and strength in are in a wonderfully better place, and I feel more resilient and energetic!  Thoughts of immediate medical disability retirement are now off the radar screen again, and I am continuing to plan for the rest of my professional future and a normal retirement in a few more years.

I am praising God for His unseen guidance through past events and issues I could not control, and for the unseen future ahead.

Benlysta seems to have no negative side effects except for a few days of extreme fatigue after most of my monthly infusions.  Extra care to prevent infections is always order, but over the past few months I have been exceptionally free of infectious diseases, somehow (by God’s grace!) avoiding strep, influenza and bronchitis, even when its seemed everyone else around me at home, work and church has been sick.  I have been both grateful and amazed!

Note:  If you are interested more information about my experience during the days, weeks and months after Benlysta treatments started, please feel free to check out my posts starting in August 2011 that explore that early part of my Benlysta journey toward better health and quieter lupus on my new Benlysta Journal page.

Thanks-giving and Lupus

Focus on Thanksgiving

This is the one week of the year when the entire nation focuses on thankfulness.  Giving something means someone is receiving the gift.  Thankfulness is a gift, that when given blesses and honors the recipient.  To be worthy of thanks being given to them, the recipient must have behaved in such a way to inspire the gratefulness of others to such a degree that they are motivated of their own will to offer the gift of thanks in response.

Although lupus certainly is not a person, it at times seems to take on the status of person-hood.  It is often personified in my speech, as if it were an actual being.   Thus, it nearly has personality, perceived to change daily in response to the things I do to it, to aggravate or placate it.  At times it is unpredictable, capricious and even annoying.  Supposing for the sake of argument, lupus was a person, it would not be worthy of thanksgiving based on its demonstrated behavior.  It is off my “thank you” list.

Thanking God the ultimate focus

However, after thanking Almighty God, who is the ultimate focus of my highest thanks-giving, for his unconditional abiding love, undeserved forgiveness and boundless power, there are several things and people surrounding lupus in my life that are worthy of heart-felt thanks.

Thankful for people

People I am thankful for:

My husband for his patience, kindness, comfort, candor, help, encouragement, love and amazingly high opinion of me

My immediate family and a few close friends who believe lupus is real, and have eyes to see and care about my invisible challenges and chronic illness

My church family and friends, for those who care and pray for me, and ask how I am doing when they know my life has become busy or stressful

My supervisors who unfailingly support me, encourage me, accommodate me and believe in me even on my bad CNS lupus flare days

My coworkers who support me and who have made a point to gain lupus awareness, and who take time to ask questions so they can understand

Thankful for doctors

My primary care doctor who was persistent enough to search for an answer when I was arthritic, crippled and pain ridden at thirty

My rheumatologist, who continues to cajole my proactive management of my lupus, pushes me to set goals for improvement of my health, confronts counterproductive behaviors, and prescribe the right balance of medications for optimal management of my lupus

My chiropractor, who uses gentle adjustment methods that neither aggravate my old cervical spine damage nor my lupus arthritis, who understands how auto-immunity plays a part of my total health, and shares faith in God and some lighthearted humor and chuckles with me

My pharmacist, who calls me by name, watches over my drug interactions, and processes hundreds of insurance claims for prescriptions each year

Things I am Thankful for:

Thankful for things

My Bible, whose words are a constant source of comfort, strength, encouragement, wisdom and whatever else I might need at the moment

My piano, and the joy of playing it each morning to overshadow the difficulties of the earliest hours of my day, and that helps me gauge my fitness for driving by helping me measure and improve the quality of my eye-hand-brain coördination.

My house and large outdoor covered patio that gives me ample indoor and outdoor roaming room outside the rays of the sun

Thankful for blog and readers

My bike and the fluid trainer I ride it in for indoor exercise, and for how much better and how much less pain I feel after each workout

My tile and wood floors that are so much easier to clean than it would be to vacuüm that much carpet!

The Lupus Foundation of America, and it’s role in supporting lupus research, awareness, patient advocacy and physician education.

My blog (and readers!) and how much I have enjoyed receiving the encouragement of others as well as having the opportunity to connect with other bloggers, and to inform, encourage and challenge others related to lupus issues.

Thanks-giving and Lupus!

Can I be thankful each day?

This ends up a long list!  Who would have thought there were that many things to be thankful for, with a focus on lupus?

Perhaps if I just think about one of these people and one of these things each day, while thanking God for them, it might influence my attitude positively.  It might just help me keep today’s thankful heart well into the new year and beyond the Holidays.  This might be a good goal, that at the end of next year, I might be able to be thankful for, as well.

Benlysta infusion #10 while pondering the good, the bad and the ugly of lupus

The good…

Lupus brings on many challenges and many victories.  Today I am sitting in the cancer infusion center at the hospital getting my tenth Benlysta infusion, and am pondering the good, the bad and the ugly of lupus.

First, the good – Five good things and small victories that keep me going.

1. An outstanding support and encouragement team:  my husband, family, employer, church and friends
2. Overall improvement using new biologic drugs:  first, two isolated Rituxan infusions; and now, monthly Benlysta infusions
3. A great medical team:  a great family doctor who first suspected lupus, the top rheumatologist my family doctor sent me to over 20 years ago, a great insurance program, awesome infusion team, flexible dentist, a careful conservative chiropractor, and the Great Physician.
4. Finding out that exercise can reduce my pain, lift my emotions, give me more stamina to fight the lupus fatigue, and help me lose some of the weight that prednisone makes it easy to gain.
5. The resources available today on the internet that inform, encourage and challenge me:  Lupus Foundation of America, internet medical resources, other lupus bloggers, blog followers and the online lupus community. Check out my blog roll on the Great Lupus Blogs page for more.

the bad…

Next, the bad – Five of my toughest challenges from lupus.

1. Central nervous system lupus involvement:  Brain fog, mental confusion, short-term memory loss, forgetting names, confusion about date and time, and impaired conceptual and analytical thinking
2. Fatigue: the bone-tired weariness that everyone else does not see nor understand the reason for
3. Arthritis:  Deep pain and inflammation in all my body’s joints, pain in my tendons, deep bone ache in my arms and legs, and occasional lupus migraines
4. Peripheral neuropathy: pain and nerve irritation in my legs, cranial nerves and spine
5. Sjogren’s syndrome:  dry mouth, increased dental challenges, and recurring painful mouth and nasal ulcers

the unacceptable!

Last, the ugly – Five totally unacceptable things that require me to be humble, to ask for forgiveness and/or take other, sometimes remedial actions.

1. Completely forgetting to go to a really important social or work event, weddings, birthday parties, business meetings, doctor appointments – there is no way to recover the lost opportunity, so honesty and an apology is usually the best and only response.
2. Inadequate sleep and the brain-dead morning that follows – sometimes it makes me have to write off the next day and go to bed to keep from going immediately into a flare, and sometimes just requires taking longer the next morning to wait on CNS symptoms to clear before driving to work.
3. Times when I have a bad attitude toward my lupus or others around me – this is tough, because the best way to deal with a bad attitude requires humility and fixing the unacceptable condition of my attitude and heart. Sometimes, this simply cannot be corrected without the grace and forgiveness of God, and His kind work to allow me to borrow from Him an attitude I cannot author by my own imperfect self.
4. Overactive social schedule, and not knowing when to say “no” – This is difficult when I have to retract a promise or commitment because I have misjudged my abilities. The hit on my credibility and reliability is something that I have to sustain to correct things after over committing myself.
5. The times I am unable to meet the needs of my family because lupus wins a battle – This requires honest, direct communication with those closest to me, balanced by realizing that love sometimes must be selfless, and the realization that I am not the only one with needs. All good and healthy relationships need give and take to be balanced. It is important to acknowledge that there are unmet needs, and it may not be fixable.

A heart-felt conversation, but not about Lupus today!

Easter conversation in my heart

Today is Easter Sunday!  My thoughts are focused completely away from my Lupus, and onto the silent conversation going on today in my heart.  Easter is not originally about bunny rabbits and Easter eggs, although they are certainly a colorful and fun part of many modern-day Easter observances.  Today, I am looking forward to an Easter that is all about Jesus Christ, and the amazing thing that happened early on a Sunday morning 2,000 years ago.  My internal conversation dwells on my gratitude for the One whose focal birth divides the Gregorian calendar into two halves, B.C. and A.D. ["Before Christ" and Latin "Anno Domini," or "year of our Lord."]

The Bible tells the Easter story

The Bible teaches clearly and simply that God Himself loved man so much that He Himself condescended to enter into His own creation, and came to earth, born miraculously as an infant in the person of Jesus Christ.  It reports that he He lived a sinless life, and then for three years had a ministry preaching and performing many miraculous acts in front of thousands of people all over the land of Israel.  He then died in undeserved punishment on a Roman cross outside the city of Jerusalem in Israel.

After His death, Jesus’ body was wrapped in ointments, herbs and fine linen and placed into a new tomb owned by a man named Joseph.  A boulder was rolled over the opening in the rock, and Roman soldiers sealed it.  The Roman’s remembered that Jesus had predicted in his preaching that he would return to life from death after spending three days in a grave, so soldiers were posted outside the tomb to keep watch for three days, guarding it against tampering, fearing the theft of His body by Jesus’ followers.

Empty tomb

Early in the dawn of the first Easter morning, Jesus arose from death miraculously, as He predicted.  The soldiers guarding his tomb were astonished, overwhelmed and stunned by His resurrection and the opening of His tomb.  Historical passages in the Bible report that after Jesus died and was buried, He arose from death after three days.  He then appeared after his resurrection to his disciple Peter, then to the other disciples, and after that to over 500 people at one time.

My heart today ponders and marvels at the love of a Creator that would motivate such selfless, merciful, forgiving behavior, and the importance of that event in connection with my life today.

The term “gospel” or “good news” comes from the Christian belief that Jesus’ death is offered as a substitute punishment for each man’s sin, available to any man who would believe in Him as their own Savior.  The “rest of the story” of the “gospel” includes the report of Christ returning to life after three days, and as a result conquering both sin and death.  This has the effect of forging a way for man to follow Christ’s experience of resurrection after their own death.  As a Christian, I believe that He gave his life in place of mine, and took the punishment I deserved for my own sins upon himself, and then arose from death. This sets me free by faith in Him from the punishment for sin, makes me eternally grateful, and opens a miraculous door for me to have a restored personal relationship with God himself.

Easter celebration!

Easter for a Christian is the annual celebration of the powerful victory of Christ over death and sin that reaches down through the ages to us, to me, to you, to any person who will believe in Him and trust Him to forgive their own sin and save their soul.

Later this morning there will be some beautiful, glorious music at church, where the worship service will focus on the Bible’s message of the gospel of Christ, the “good news” of Easter.  It will be a privilege to sing with the church choir some amazing songs of celebration and gratitude.  It will be a blessing to listen to my husband’s magnificent tenor voice as he shares a special solo about Christ’s resurrection with the congregation.  Finally, our family and friends will gather at my in-law’s home for a special afternoon Easter dinner, together recognizing and remembering the single historical event most pinnacle to our Christian faith.

Today, my conversation is all about celebrating new life, and faith in the One who makes life possible.  I can live, because He lives!  Happy Easter!

Lupus and the quote that most inspires me

A quote that most inspires me

Inspiration and strength of character necessary to fight an auto-immune illness come from many sources.  My most powerful and trans-formative resource for healthy psychological and spiritual perspectives are found in the Hebrew and Christian scriptures of the Bible.  Many passages and quotations strengthen my heart by encouraging, challenging or even instructing me to better understand my human nature.  Many verses within the Bible help inspire a positive outlook on my auto-immune disease, but one simple verse best expresses how my faith and relationship with Jesus Christ enable me to face lupus and all of life’s other challenging adventures.

The Holy Bible - a source of joy and strength

A Hebrew prophet living long before the time of Christ penned the words, “the joy of the Lord is my strength.” This single phrase reminds me that a joy-filled life and daily experience are not dependent upon circumstances, such as lupus, that cannot be changed nor controlled.  The prophet Nehemiah’s proclamation resounds with timeless truth: powerful joy and exuberant overcoming strength of character find their source in a faith relationship with our Creator, and not in the conditions and circumstances of our human condition.

The joy of the Lord is my strength.

This joy of the Lord flows through my daily life with an overcoming exuberance that need not be defeated by pain, illness, adversity, nor even lupus.  Real joy from God runs through me at a deeper level than the challenges of lupus or other life struggles.  This true joy is an unchanging and unfailing source of daily strength, mingled with great gratitude to the God from whom I borrow my strength.  The source of this amazing overcoming joy and power do not arise out of me, myself, but rather these strengths flow from God himself.

Lupus, and adventures in learning

Lupus and learning...

Lupus patients with CNS involvement often have trouble with short-term memory, and can find learning new information especially challenging.  For me, it took over two years of study and two examinations before receiving the good news today that I passed a professional certification exam.  A heartwarming “Congratulations!” opened the letter I received today announcing the results of the exam I took last month.

The approach I successfully used as a lupus patient with CNS involvement and short-term memory problems, is expressed through an acronym describing the behavior of effective learners.

LEARNERS retain what they know and understand.

Learners retain what they understand

L – Listen repeatedly to recorded learning materials for long term memorization using aural gateway to mind while exercising, driving, etc.

E – Endeavor to gain total comprehension and mastery of new subjects for long-term retention

A – Allow time for study and mulling over information for extended time period without short-changing the effort required

R – Remember details with flash cards, acronyms and memorizing techniques/tricks using oral and visual review

N – Note down and outline key points while reading large volumes of learning materials to involve deeper mental processes and multiple senses

E – Establish a schedule and divide topic areas into date-specific learning goals, and celebrate incremental learning successes

R – Review and repeatedly study information multiple times to deepen familiarity with material

S – Summarize key concepts and restate ideas in simple terms to increase comprehension, and “teach” to imaginary or real captive audience

Rote memorizing is less effective

For people with short-term memory problems, rote learning has limited value.

Rote learning focuses on memorization by repetition, often without gaining an understanding of the reasoning or relationships involved in the material that is learned.  I used rote memorization only as a support to the material that was also studied for long-term comprehension.

ROTE memorizing emphasizes words without necessarily comprehending the information.

R – Risks quickly forgetting information

O – Omits understanding and comprehension in learning process

T – Taxes short-term memory and fatigues conscious mind

E – Effective for learning details, dates, acronyms and abbreviations

Grateful for support and prayer

After now successfully passing my second certification exam, I am very grateful for the support and sacrifices of my husband, family and friends who encouraged me and prayed for me during my extended study efforts, and for my study group and an extra special study buddy.  I am also very thankful for the support of the attorneys I work with who persisted in their belief that I would succeed.

Mostly, I am extremely thankful for God‘s help, strength, and for many answers to prayer throughout my study, a failed exam, more study and a second exam.

The night before this most recent exam, I could not sleep and was bleary-eyed and foggy brained the next morning.  I am certain that without God’s grace and mercy, my weary lupus-impaired mind could have failed me during the grueling test, despite the effectiveness of all my prior learning efforts.

I am truly humbled by my success, and the necessary support of the many who participated with me in prayer and emotional support.  We have gained a victory together.  When I arrived home after work this evening, my husband had a lovely vase of roses and a scrumptious layered cake bearing a “congratulations” message waiting for me on the kitchen counter.  Our family celebrated the success with us, joining us for dinner and a special dessert.

[Follow up note:  January 12, 2012 - Today brought a special honor when the national publication of this professional certifying association published my article, that included an expanded discussion outlined by my acronym describing "LEARNERS" first published here in this blog post. Please see today's post about the publication of my article. ~~ Sincerely, Lupus Adventurer.]

Benlysta Infusions for Lupus – Day 60

4th Benlysta Infusion - Day 60

Today was my fourth infusion of Benlysta for Lupus, since they began in late August.  It has been one month since the last infusion, and I am beginning to think I may be just starting to feel the benefits.  The medical literature about Benlysta indicates the earliest benefits may be noticed as soon as 8 weeks after starting treatment.

Today, I woke up feeling unusually good, and had one of the best days I have experienced in weeks, or even months.  Just yesterday, my friend commented about my unusually spry steps while going up and down the choir loft steps at our church.  Feeling good yesterday and today was somewhat surprising to me.

After being out-of-town for several days, and arriving home late Saturday night after a three-day professional education conference in a nearby state, I expected that my lupus would flare from sheer exhaustion.  However, so far this trip has not been followed by a lupus flare!

This was a better outcome than I expected.

Walking, a misguided decision

During the first day of my conference I made a woefully misguided guided choice, and walked the distance between my hotel and the conference hotel twice.  Since there was no “straight shot” to get there on foot, I walked the long path that traversed elevated walkways and tunnels, meandering around and through several large (massive) connected shopping malls and resort hotels.  After committing myself to walking, I was soon filled with regret.  Severe lupus arthritis pain quickly set into my feet and legs, followed by the onset of neuropathy in my legs later that night after returning to the “safety” of my hotel room.

Soaking tired feet in the roman tub

To help alleviate my leg and foot pain, I soaked for over an hour in the luxurious roman tub in my room, until all the pain and stiffness had melted away.  Chatting with my husband on the phone, we devised a better plan for the next two days.

To my amazement, I felt reasonably well the second day.  I was even was able to get up and out to an early morning breakfast meeting on time!

This feat would ordinarily be very hard for me to accomplish on any given day, since waking up most mornings includes experiencing significant lupus symptoms.  My mornings are usually greeted with pronounced arthritis symptoms of joint stiffness, swelling and pain, along with measurable evidence of persistent central nervous system involvement, including cognitive deficit, reduced eye-hand coordination, “deep brain ache” and mental fogginess.  My arising sense of well-being is usually complicated by each morning’s adrenal insufficiency symptoms, which linger for at least an hour after a morning prednisone dose.

Definitely worth the investment!

However, with renewed wisdom and following my husband’s advice, I took taxis during the remaining days of the conference every time I went back and forth between the two hotels.  This simple preventative step was worth every wisely invested dollar.  As a result, crippling lupus arthritis pain did not recur during my trip.

Infusion Center Hospital

I worked a short half-day this morning, and then headed out from my office toward the hospital.  This afternoon’s Benlysta infusion treatment went very smoothly.  Realizing I had forgotten to bring along the adventure novel I started reading on my trip I sought a different diversion.  Finding some alternate amusements, I was quite contented to kick up my heels in the infusion center recliner and browse old magazines, watch an afternoon re-run episode of Law and Order, and munch on snacks while sipping spiced tea.

The next Benlysta infusion will be one month from now, early on Thanksgiving week.  The month ahead will be an unfolding adventure, as we watch and wait to see how Benlysta may begin to control and improve my lupus symptoms.  However, the outcome is in God’s hands, and I am thankful for His will to be done in my health and lupus, whatever that proves to be!

Lupus and Benlysta after six weeks and six days

Benlysta works slowly

Well, the reports that Benlysta works slowly have been validated in my experience.  While there seems to be a hint of lighter lupus symptoms, overall changes have been slight or perhaps coincidental so far.  My general health and lupus has been up and down, responding as usual to recent stressful events and exhaustion with its usual tendency to flare.

Six weeks and six days ago was Benlysta infusion number one, repeated two and four weeks later.  The fourth is set for another two weeks from now.

Why does Benlysta take so long to work?

Six weeks and six days... and waiting

The best I can understand it, response to Benlysta is slow because existing malfunctioning B-Cells that produce lupus anti-bodies take weeks, or as much as two or three months to die off.  After they are gone, new replacement B-Cells emerge which function more normally, rather than in the confused state that Blys protein bombardment causes.  Benlysta seeks out roving Blys messenger proteins produced by bone marrow stem cells, reducing the amount that reach the B-Cells.

It seems that B-cells don’t like being surrounded by a yelling throng of messengers, and the overwhelmed B-cells get extremely confused by the bio-chemical cacophony.  Benlysta works by dispatching the messengers away on other errands, therefore permitting the B-cells to live out quieter, more peaceful and healthfully productive lives in the absence of the previous chaos.   An occasional Blys messenger comes by now and then, but without having to vie for the B-cell’s attention, the message is delivered accurately and received clearly, and is supposed to successfully trigger an appropriate immune response.

Lame duck B-cells

I can hardly wait until my confused, worn out, lame duck B-cells pass on into their cellular debris afterlife, and the upcoming fresh new, unconfused ones take their place.  A few more weeks, or perhaps another month or two, and I hope to see measurable improvement in my lupus.  I  have been praying that I will be one of the lupus patients that Benlysta infusions will help.

As patient of a patient as I may seem to be, tomorrow would not be too soon.  It might be just “ducky!”

Lupus and Benlysta after five weeks and five days

Slight glimmer of improvement?

Today is October 4th, and exactly five weeks and five days after my first Benlysta infusion for my lupus.  Even though I have had some thoroughly exhausting activity over the past week, it seems many of the recent mornings are still showing a slight glimmer of improvement.  It may be too soon to tell, and this morning is clearly a great flaring exception, but I have been encouraged a little by awakening with what seems like slightly lighter symptoms followed by a little bit quicker and more complete morning recovery from lupus fog, CNS difficulties, joint stiffness and pain.

However, this morning dawned with an exceptionally acute flare, most likely triggered by last night’s lack of sleep from neuropathy pain.  Deep bone pain is in my fingers and wrists, feet and knees and the long bones of all four extremities.  However, while taking this morning off from work to help fight and turn around the effects of this flare, I am choosing to remember yesterday.

Morning fog clears

Yesterday was one of my most productive work days in weeks.  Morning fog was lighter and lifted a little more completely than normal.  It seemed as the day progressed everything inside me was clicking along like “clock work” and I got great things accomplished on my job.  I am choosing to focus on the recent slightly better mornings, and consider this morning as a mere stubbed toe in the ongoing battle against my lupus!

My prayers are that Benlysta will keep doing its thing and that it will soon make a big difference.