Lupus Adventures at the Arizona, Walk to End Lupus Now 2013

Registration & Check in Area

Walk Day

Today, I am sitting here in the shade of a ramada at Chapparal Park in Scottsdale, Arizona enjoying some beautiful spring weather.  I am writing from the registration table at the Lupus Foundation of America (LFA) Walk to End Lupus Now in Scottsdale, Arizona and joining today’s festivities as a virtual walker.  The other (real) walkers took off on the 3.1 mile long course a little while ago.  Today’s walk is much too far a walking distance for my lupus arthritis and joints, and too much sun exposure for lupus sun sensitivity.  Alas, I am relegated to the ranks of sun dodgers sitting here in the cool shade of the registration table.

Key LFA Staff Joined Us

Attendance at today’s walk is impressive!  Key members of the LFA national office staff joined us to support and help with today’s walk arrangements.  Countless participants turned out, so we spent more than an hour checking in a massive crowd of  pre-registered and walk-in teams and individuals.  Including the over $39,000 dollars tracked online ahead of time, today’s fund-raising efforts should net many thousands of dollars to support the LFA.

Many sponsors supporting the walk

We had several sponsors today helping with costs of putting on the event, including co-sponsor, the City of Scottsdale that donated park access without charge for the event.

Walk T-shirts & Prizes

Also, we had support from AllSup disability representation company, Data Doctors computer services, GoDaddy.com, Blanco mexican restaurant, TinySolder.com screen printed clothing.  Additionally, health partner Arizona Arthritis & Rheumatology Research (AARR), the research arm of a large Arizona rheumatology practice, sent representatives to speak with today’s walkers about current and future lupus research studies.

Anne from Glendale, AZ

Today’s walk was a complete success!

As I sat around in my shady oasis, I met several interesting people today.  The first I want to highlight is Anne from Glendale, AZ.  Anne agreed to let me tell her story and told me a little about how her lupus problems have frustrated her over the years.  Her CNS Lupus was diagnosed in June, 1999 on a date she remembers vividly after many years seeking a correct diagnosis.  Before lupus interrupted her career, she worked in and around the Arizona legal community as a court reporter.  Eventually, her central nervous system lupus disrupted her job-related mental skills and triggered her medical retirement.  She began receiving Social Security Disability benefits, and these eventually converted to Social Security Insurance retirement benefits after she reached normal retirement age.  Anne was a joy to speak with and we shared a few enjoyable minutes in the shade chatting.

Liz and Friends after the Walk

Also camping out at a shaded picnic table after the race, Elizabeth and her group of close friends and family conversed about their lupus connections with me.

Liz was hospital nurse for many years, until she reached a point where she felt her CNS lupus might be posing a medical risk to her patients.  It was a wake up call when she realized she was using way too many post-it notes “all over her patient’s medical records” to keep track of their information and things she needed to do in their treatment.  She felt her CNS lupus might be a threat to the lives of her patients.

Eventually, Liz retired because of the  essential physical and mental functions her nursing career required.  She shared her amazing story of personal strength and persistence.  Nearby, the family and friends on her walk team demonstrated the genuine and encouraging support circle every lupus patient needs and hopes for.

Finishers Cross the Line

Also, in my shaded corner of today’s walk was Toni, today’s walk chair, as she stood briefly after the walk talking with ex-nurse Liz and David, the Arizona LFA representative.   Tony moved so quickly without stopping I never managed to snap a good picture of her!

Toni is an amazing woman with lupus who eventually retired from her army career.  While serving our country in Afghanistan, acute lupus kidney failure quickly sent her stateside and terminated her activity duty status.  Eventually, lupus led to her medical retirement.

The winning team raised thousands!

Toni’s team brought in today’s highest combined contributions totaling well over $4,000  from over 60 individual donations ranging from $5 to $500 dollars each. Her team’s efforts are an outstanding example of people joining small efforts together to make a great difference!  Her team of sponsors and walkers showed their overwhelming support of Toni and the Arizona 2013, Walk to End Lupus Now.

The day after the walk

The day after the walk…

Now it is “tomorrow” and Sunday afternoon, and I am finally finishing up my summary about yesterday’s walk.

My husband, advice giver and walk volunteer!

Today, I have stayed home from church to rest — in strict adherence to my husband’s wise and persuasive advice.  After yesterday’s walk, I rested all afternoon while my husband volunteered to do our weekly laundry for me.  Today, I feel as if I walked 30 miles yesterday, but all I did was watch a throng of people do all the walking!  I just sat in the shade chatting, taking a few pictures, processing walker registrations for a couple of hours and watching as real walkers completed their course.

Lupus is unpredictable!

Lupus is unpredictable and funny that way.  Sometimes, just having an eventful day is enough to bring on exhaustion and fatigue in its wake the next day.  Today, somebody (lupus!) pulled my plug and I am all out of steam to run my little engine.

Alas, today I am not even the “little engine that could.”  I thought I could, but I can’t!

Thank you, donors!

Last, but not least, I would like to extend a very special thank you to  my family, friends and co-workers who supported me and invested in the Arizona Walk to End Lupus Now, 2013.

More walk pictures…

Lupus Fatigue and Finding a Fighting Spirit

A tidal wave of lupus fatigue.

As I stand barefoot on my cold, wet beach and watch the receding tidal wave of lupus fatigue ebb away from my shore, I see surrounding me the vast lifestyle devastation the overwhelming flood of tiredness left in its wake.  Mayhem is everywhere.  Laundry sits unfolded, dust accumulated, real and junk mail sit in an unsorted stack overflowing my desk, and my rugs and floors are looking pretty sorry indeed! All around is a general sense of disordered clutter and mishap.

While seeking a means to withstand the exhaustion and bone-tired feelings, all my work seemed half-abandoned at home and at the office.  I spent many days sleeping until noon, some days telecommuting, some days lounging in pajamas all day, a few days going in for half-days, but braved only a couple of full in-the-office work days.  The siege of fatigue waters have left an unkempt landscape about me as my physical weariness finally begins to recede.

Domestic and professional
disorder after a flare

Once again, I begin to pick up the scattered domestic and professional pieces of my normal life following a lupus flare.

Although this flare has been quite disabling and my lupus arthritis was very aggravated, I am thankful that neither my central nervous system lupus nor neuropathy flared.  Through the last couple of weeks, these often clear manifestations of my lupus have remained unusually quiet, and for this I am grateful.  At least, this was not an all out every system lupus attack, it was merely physical and not mental.  The only predictable thing about lupus is its unpredictability.

Hope and snow yesterday!

I had hope yesterday and even more this morning that my two-week flare of lupus fatigue is finally ending.

Yesterday brought a massive real weather storm to Arizona, and parts of the Phoenix valley saw snow, sleet and hail – a rare phenomenon in our desert city!  I stood on the second floor balcony at work with co-workers, as we held our hands out to catch and look at the soft white substance that melted on our hands and accumulated on ground below.  My son-in-law, a native Phoenician, regaled us last night with a report of his first experience driving in snow.

Although we had heavy rain and icy forms of precipitation all day long, I was feeling measurably better and was able to work a full day at the office.  My joints were still very sore, but my spirits and energy were on the rise.

Birds, singing in the rain!

This morning, as I hear the birds singing outside my window, I feel a little like joining them.  Perhaps a couple of the areas of disorder that are now beginning to bother me will get tackled this morning. Earlier this morning, I stood outside in the 48 degree morning chatting with husband while his rain-soaked car warmed its engine and dripped into the puddles on our driveway. The cool, moist morning air felt refreshing today instead of wearying.

With near exuberance I heard myself proclaim, “I feel almost like myself again.”

We will rejoice and be glad

Indeed, every storm has an ending, and today, I have once again found my fighting spirit!

I am just now reminded of the scriptural words I sang to a simple hymn I played yesterday morning at the piano.  “This is the day that the Lord has made, we will rejoice and be glad in it,” Psalm 118:24.

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.

Lupus adventures in a sea of numbers

swimming in a sea of numbers

For me the holidays are always followed by two new years.  First, of course is the one that begins on January 1st each calendar year.  Then, each year I face a mid-January deadline for submission of the government budget request for our legal department.  As the legal administrator, budget management is one of my core responsibilities.

About this time each year, my lupus-challenged brain is floating in a sea of budget numbers surrounded by revenues, expenditures, fees, estimates, projections, averages, trend lines, pie charts and bar graphs.  This means many long hours peddling along in my little raft, floating in a sea of several million dollars.  By the time the budget request is submitted for the fiscal year starting July 1st, calm fiscal waves will once again be gently tossing dollars on a peaceful beach of orderly financial landscape.

challenges at budget season

Over the past few years since the beginning of the recession, there have been challenges to face at budget season that were more stressful and demanding than in any of the twenty-plus years of legal management in my career.

Yet, I am very thankful to work for a government that practiced sound and careful financial management practices, guided by wisdom and thoughtful use of taxpayer’s money.  I take my role of public service very seriously, including my role as an accountable steward of public money.

the next few days…

Over the next few days I will face the last of the budget “crunch” to get the budget finished that began in mid November.  The spring will hold many meetings and balancing efforts, and the eventual approval of our department budget.

Although there will still be much to do following my end of week deadline, the rest of this week will be all-consuming. During this intense time of work each year, extra care is required to prevent triggering a flare of my lupus.  Some years, I have done very well, and some years very poorly, but always I must be careful as I work long hours finishing the budget.

Wish me well, and I will meet you again next week on that peaceful post-budget shore!

Benlysta infusion and forgetting something

stopped at the valet

Today was my last Benlysta infusion of the year, and I was the last infusion of the day at the hospital’s cancer infusion center.  As I arrived, I stopped at the valet parking station and headed right in.  In the waiting room the discovery of my Nook tablet battery on empty made me wonder what I would do for the next couple of hours.  Soon, I was distracted into a Christmas mood by noticing wreaths, a Christmas tree and other colorful holiday decorations bringing cheer to the infusion center suite.  The nurses welcomed me with offers of goodies and an invitation to sample the contents of a generous spread of treats.  The nursing staff and a couple of patients had all contributed to a bevy of sweets.

sampled a brownie

As I sampled a soft, gooey brownie filled with walnuts and chocolate chunks, I started craving some coffee, and made a note to myself for next year to bring something to share at my December infusion.  While the staff prepared my IV infusion set up, I dropped my purse and jacket at the infusion chair closest to the coffee station and brewed a single serving of some surprising great coffee, complete with my favorite hazelnut creamer.

vein on top of my hand

Although I have easy to find veins, the nurse had trouble run getting past a valve in the vein on the top of my hand, just as we both remembered she had the same problem in the same spot once before.  She explained that some patients are what she called “valvy” explaining some people have more valves than normal.  The unusually uncomfortable feeling of pressure in the vein had me communicating my discomfort with conviction, as the nurse commented the IV had just blown out.  Pulling the it out, she and I both agreed she would have to toss it and try another IV in a new vein.

got the infusion going

Soon, she got the IV successfully in place and started the Benlysta flowing.  I settled in to read a novel I had borrowed from the book cart on the way in, not sure it was going to be one I would want to read through to its end, but its early pages sufficed to keep me amused, sans my uncharged techie toys. The short one-hour infusion time passed quickly.  Most infusion days, I arrive at around 3:00 p.m. and am usually walking out by 5:30 p.m. or so. Today was no different, except for stopping briefly to exchange Christmas wishes with the nurses and saying goodbye until “next year.”

cash for a tip

The infusion center validates valet parking for patients at the hospital, but I realized as I left the building that I did not have any cash for a tip.  I left my keys with the valet, and let him know I would be right back.  I headed for the main hospital building to find a teller machine.  Just inside, I found one, pulled out some cash and went to break a twenty at the gift shop.  I found a cute battery-powered necklace made of miniature Christmas lights, thinking it would be fun to wear to work next week, and calculated the cost just was enough to break a twenty with plenty of change left for the tip.

Once back in my car, I headed out toward the street, suddenly realizing I had forgotten the file folder I brought with me, expecting a call from my financial adviser.  I remembered I had left it on top of the teller machine!  In a panic, turned my car around at the light and rushed back to the valet station.  Handing my keys back to the valet, I hurriedly explained I had left some very important papers and had to go get them.  I literally ran back through the hospital entrance, glad I was wearing sneakers, and uttered an audible thank you prayer as I spotted my pink file folder atop the teller machine.

Catastrophic in the wrong hands

Inside the file was a receipt, super bill and lab orders from my rheumatologist and my medication list, but more importantly, it also contained my father’s bank statements and the durable power of attorney for handling his business affairs.  This week, I have worked with the bank to restructure some of his maturing investments.  The file contained all dad’s bank account numbers, statements, account balances, addresses, etc.  This information, together with the details in the power of attorney documents, could be catastrophic in the wrong hands, potentially providing everything someone would need to commit bank account takeover fraud.

Slowing down abruptly to stop the pace of my pounding heart, I retrieved the file with a deep sigh, took a couple more intentionally deep breaths, and whispered another short  prayer of thanks.  Instinctively, I clutched the file tightly to my chest as I slowly walked back outside.  Thanking the valet once again, I was back in the driver’s seat and finally truly headed home.

lupus and short-term memory deficit

As I pulled away, I noticed my heart was still pounding and grumbled to myself.  I was extremely frustrated that lupus and my short-term memory problems from CNS lupus caused me to forget something so important!  I was also angry at myself for being careless with the file.  At the same time, I was extremely thankful I remembered it in time to prevent financial disaster.

My favorite expression from the famous Charles Schultz cartoon character, Snoopy the dog, was on my lips as I drove toward the freeway, voicing a deep guttural “aarrgh!”

 

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.

Lupus and the irony of sleeplessness

Exhaustion and sleeplessness

Exhaustion and sleeplessness – two contradictory problems that stem from lupus when it flares.  The irony is that lupus brings on neuropathy pain and deep bone and tendon aches to my body in the midst of those nights when I am already exhausted and desperately need sleep the most.  Sometimes, on nights like last night, I take pain medication in the hopes of quieting the pain enough to sleep, and knowing the medication should also help knock me out.  Last night, I was resting physically, laying still in my bed, but the mental rest of sleep eluded me entirely.

jealous of those who slept

Morning neared as I heard the grandfather clock strike five o’clock.  I quietly listened to the song birds begin to stir in the predawn darkness, rustling in the lemon tree outside our bedroom window.  I was motionless and sleepless next to my sometimes snoring, slumbering husband.  To be honest, I felt intensely jealous of his ability to fall deep into restful sleep, while I stared at the dark ceiling awaiting the first rays of light.  Soon, there was chirping and some short bursts of morning bird song and cheerful chatter.  Even the birds made me envious!  I knew that they, like my husband, had slept all night and were just now waking a few moments ahead of first light.  Their tiny avian body clocks were in good working order, but alas, mine was not!

slipped my toes into waiting slippers

As smoky first light began to slowly illuminate the room, my body began to respond to acknowledge it was morning.  I sat up, pushed back the covers and slipped my toes into the waiting purple slippers on the hardwood floor.  Scuffling out to the kitchen, I accepted my weary plight.  Morning had now broken and I was completely and utterly exhausted.  Slightly brain-dead and concerned about the tendency of my CNS lupus to flare in the wake of sleep deprivation.

No time left for sleeping

There was no time left for sleeping and slumber, since my day was going to march forward whether I was rested for it.  Soon, we would be breakfasting with our son, daughter-in-law and their four little ones.  Today, I am determined to stifle and rise above my exhaustion, counting on the adrenaline of joy to fill my precious moments with our visiting grandchildren.

the joy of the Lord is my strength

Thanksgiving week is set out before us, and we are blessed with our out-of-town loved ones visiting.  Today, although I would love to be fully rested to enjoy them with full energy and bounce, I will make do with what energy reserves are left over from yesterday mixed with a bit of “faking it.”  The irony of wanting and needing sleep, and not getting a drop is not going to erode the blessings of the day and week ahead.

My thought for the day comes from one of my favorite Bible verses, Nehemiah 8:10, “the joy of the Lord is my strength,” and today God will have to be the sole source of my sustenance and power.  Sleep may have been lost to me, but this day it shall not take my joy with it!

Lupus, an Assistant and an Anniversary

Working with lupus

Working with lupus is most manageable for me when I have good clerical support staff.  Recently, my assistant resigned to take a job in law enforcement working for Arizona’s renowned Sheriff Joe Arpaio.  He is an outstanding young man the age of my son, who came to our office from another department through an internal recruitment.  In the short year he worked for me, he proved to be more competent than any other assistant I have had in the past twenty years.

Congratulations were in order.

So, today, three weeks later I am still feeling the loss of such an outstanding employee.  We wished him well, threw a small party to send him off, and were glad to give him support and encouragement as he set out to break into his desired career.

Over the past 3 years when I had similar position vacancies, the recession forced us to fill jobs internally when possible, as we successfully attempted to downsize without layoffs.  Only recently have we returned to public recruitment announcements, and I was able to extend the recruitment for this vacancy to outside applicants.

Without my personal assistant, I have had to divide the duties of the empty position between myself and another member of my staff.  We are both muddling along in good spirits trying to get all three jobs done between the two of us.  I am doing a few things myself that I haven’t done in years, and it is good for me to handle tasks and see exactly what my support staff must do.

Lots to do…

However, my management duties are suffering a little now while I help members of my office carry out the bureaucratic day-to-day duties my missing assistant performed, such as accounts payable and payroll.  I also must set my own appointments and meetings, file my own records and perform previously delegated research myself.  All the while I continue shouldering my normal responsibilities of managing budgets, personnel, and the general operations of our department.

Workload is bogging down a little

I am feeling the professional stress of the extra responsibilities while knowing that other normal management areas are under-addressed. We will be forced to continue operating this way for a few weeks.  Although the economy has improved, it is not yet good enough to justify spending money on a temporary agency for short-term staffers.

But, I will stay sane since am soon going to get a little break.

Taking a little break soon

Today, my husband and I are planning to head out to a neighboring state where I will attend a two-day legal management conference, and then we are spending four more days on a much-needed anniversary vacation.

This weekend will be celebrating 32 years of marriage.  So,  I will be offline for the next week, unless my Nook and I happen to find a few minutes to write a quick blog post at Starbucks.

Lupus and Benlysta Infusions – after one year

Phoenix Skyline

Today marks one-year since I first sat in this same infusion center in a Phoenix hospital and began receiving monthly infusions of Benlysta (belimumab) for my lupus.

Looking out the windows I can see the downtown Phoenix skyline in the distance bordered by hazy blue sky above and a green urban forest canopy of mature landscape trees across the base of the clustered skyscrapers.

A range of desert mountains completes the scene, flowing like a wide brown ribbon behind the tall buildings, separating the verdant foreground from the cloudy blue expanse above.  It hardly looks like the desert from this vantage point above the tree tops!  But, don’t be fooled by appearances, the temperature outside was over 100 degrees today.

Benlysta quieted Lupus

Today, as I contemplate the beautiful view outside, I compare the state of my health today with one year ago.  The path of this year-long adventure has taken me to a better place, overall improved health and a measurable restoration of my quality of life.

I sit here grateful for the funds made available to pay for my treatment, since the costs to my insurer for Benlysta infusions in the hospital setting (the administration site that my insurance requires) are massive.  The total one year cost is in the neighborhood of double my annual salary!

Assessing my Lupus

So, as the Benlysta drips into my vein, I assess the state of my lupus.  A year ago I would have assessed my “healthiness” at about 50% and now I would rate it at about 75% to 80%.

Today, I am clear-headed with central nervous system involvement quiet and under good control, significantly reduced arthritis inflammation, feeling pretty decent.  I am even having a hard time remembering the last time I had nasal or mouth ulcers from my lupus. It has been a long time since I suffered with deep bone ache in my arms and legs that lasted for more than one day.  My lupus neuropathy was flaring a month ago, but has quieted back down in the past few weeks.

Better health emerged

Benlysta slowly and methodically made a real difference, like the almost imperceptible growth of the beautiful flowers in my garden, that start as tiny seedlings and slowly develop into a blooming swath of beauty. So too, my lupus has quieted and better health has emerged in the place of rampant symptoms, malaise, fatigue and pain. What a great improvement one year of effective treatment has made.

Lupus and Benlysta – One year rheumatologist check up with B+ Benlysta grade

One year of Benlysta

This month will mark one year since starting Benlysta infusions for my lupus.  As mentioned before, my lupus is thankfully now a milder, gentler “monster,” and my overall health has improved markedly.  Most importantly, my symptoms of central nervous system involvement and my energy levels have greatly improved.  Now, my cognitive function is much more stable, my short-term memory has vastly improved and my analytical and problem-solving mental processes are “back.”  I have really enjoyed overall improvement in my ability to complete mentally challenging essential functions of my job as a government law office administrator.  Benlysta helped me continue working.

The progress of lupus improvement from monthly Benlysta infusions was slow and moderate, but cumulative.  At the one-year milestone, looking back at the state of my health then compared to now, there is an unmistakable difference.  In the eighteen months before starting Benlysta, I had come of near remission and my overall condition was deteriorating steadily, and was again threatening my work.  After a few months on Benlysta my lupus quieted enough that recurring steroid bursts were not needed, and my daily maintenance steroid dose was cut in half.

Before Benlysta

Before Benlysta, my worsening lupus symptoms were many:

• CNS lupus was extremely flared w/ increasing cognition, memory and analytical deficits
• fatigue and malaise were overwhelming
• joint pain and inflammation levels were high
• gnawing “deep bone pain” in the long bones of my arms and legs
• horribly itchy lupus rashes were out of control on my hands
• mouth and nose ulcers were almost constant
• malar butterfly rash, mostly showing up “peekaboo” more in the mornings and fading at night
• sjogren’s syndrome was  very active in mouth and eyes
• onset of intense peripheral neuropathy pain almost every night
• insomnia due to neuropathy symptoms

Now, after one year of Benlysta infusions, my lupus complaints are fewer:

• pesky, but much milder neuropathy pain several times each week
• insomnia from neuropathy is much less frequent
• arthritis inflammation in my hands running amok
• a handful of random discoid lupus rashes come and go on my hairline, face, neck and arms

Benlysta gets B+ grade

So, the doctor is continuing my treatment with Benlysta infusions, and is very pleased with the improvement of my lupus.  Although we both originally hoped in vain for approval of Rituxan, because of my past dramatic improvement from using that biologic drug, that is old history.  Now, Benlysta has done a good job of quieting my lupus and improving my health.  If I were to rate Benlysta’s performance over the past year with a letter grade, it would definitely earn a B+ rating.  [Although Rituxan comparatively earned an A+, the insurance company would not pay for it.]  Benlysta’s B+ is an acceptable, welcome outcome!

Sulindac for inflammation

I am re-starting the anti-inflammatory prescription drug Sulindac for my arthritis inflammation.  This is my NSAID of choice, since I cannot take over-the-counter aspirin, motrin or naprosyn due to severe adverse reactions.  I took Sulindac successfully for most of 25 years, and it very effectively controlled ballooning hand knuckles.  For the first time in years, I was able to stop taking it completely for the five years following my Rituxan infusions.  It is time to start taking it, once again, since Benlysta is not effective controlling the arthritis inflammation of my lupus in my hands.

Follow Up in 4 weeks

To address my current problems with peripheral neuropathy, my rheumatologist prescribed Lyrica (pregabalin) to help reduce nighttime nerve pain, without having to resort to taking powerful pain killers to get to sleep.  I was surprized when I my pharmacist told me that Lyrica is not on my insurance formulary, and the drug requires precertification.  I cringed at the $350 it would be without my insurance, so my pharmacist contacted my rheumatologist to get the pre-certification process started.  Hopefully, my insurance will coöperate and the  approval will go quickly.  I will follow-up with my rheumy in four weeks.