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!

Post holiday care for a major lupus flare

Happy birthday, sweetheart!

Awaking on my birthday the morning after Christmas, my husband was plying me to enter the morning with fresh brewed coffee.  What could be better at 7:00 a.m. than fresh gourmet java?  After greeting me with a sweet good morning kiss and ”Happy Birthday, sweetheart,” he agreed to my groggy suggestion of where he could find the Christmas leftovers to take with him to work for his lunch.

Soon, he had headed out to work while I sipped half of the hot cup of coffee, and after setting down the partly finished cup, I rolled over and snuggled into my pillow to catch a little more sleep.  After all, I was entitled, it was my birthday!  One more hour would be just what the doctor ordered for my groggy grey matter.

Going for the steroids

Five hours later, I stumbled out of bed toward the kitchen, gasping when I saw the clock face on my stove read 12:07.  I had slept until noon!  The only trouble with sleeping in was that I was supposed to have been to work by mid morning, earlier than it was by then.  I stood there for a moment, and was in a deep state of mental cloud with whopping all over lupus symptoms. I was I the middle of a major post-holiday flare of my CNS lupus.  A not so welcome birthday lupus adventure!

Downed meds with more coffee

I went straight for my morning meds and some extra prednisone, downing them with a cup of fresh brewed coffee from my new Keurig coffee maker.  While it might seem like I should have been fully rested after fourteen hours of sleep, I was everything but refreshed.  I felt completely exhausted!

a quick email to my boss

I sat down at my desk and wrote a quick email to my boss explaining the all too clear truth, and set out to quickly recover the rest of my birthday and work day.

Within just over an hour, I arrived at my office but was still stumbling mentally through my responsibilities.  I had brought goodies with me to share with the skeletal group who staffed our office in the days between Christmas and New Years, and they helped me indulge in my favorite triple berry birthday pie and a plate of Christmas sugar cookies.

Except for the three high points: my husband’s good morning kiss, co-worker birthday greetings and berry pie, it proved to be one of my toughest half work days in recent history due to the extreme activity of my lupus, attacking brain, joints, and just about every other part of me.  My evening however ended on a high note, as I arrived home to a message that the kids were bringing home dinner.  We shared a quiet birthday take-out dinner from a local pizzeria with my husband, daughter and son-in-law.

Taking care of lupus flare

Each morning since, my lupus symptoms have been a little lessened, and each day I have dropped the prednisone dose by a couple of milligrams.  It will take a couple of weeks to get back to my normal five milligrams per day maintenance dose.  Although I have ambivalent love/hate for the steroids, there is no choice but to take them when my lupus flares that severely and suddenly.  The only real option is to burst with prednisone to take care of that kind post-holiday lupus flare.

Unfortunately, the extra sleep had not been enough to prevent it, but a timely burst of steroids can shut it down.  I am grateful my doctor prescribes extra prednisone for me to have on hand for quickly controlling flares just like this.

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!”

 

LUPUS FOUNDATION OF AMERICA – A Stronger Voice Fighting Lupus

Brand New LFA Logo and Awareness Slogan

You may know the Lupus Foundation of America, but have you heard about their new rallying cry and awareness campaign launched last week?  The new logo and branding campaign, should help spread lupus awareness, and help people better understand the mystery, complexity and potential severity of lupus.

Watch the video to learn more about the new LFA logo and awareness slogan:

To read more of the following excerpt from the ALA website, click on this link: more…

Help Us Solve the Cruel Mystery™ National Tour

(From LFA Washington, DC) LFA is launching a multi-city education and awareness initiative to engage the public, healthcare providers and those living with the disease in the fight to end lupus. The Help Us Solve the Cruel Mystery™ National Tour will feature a 45-foot bus, equipped with eight interactive exhibits and displays, where visitors can learn about lupus, experience what it is like to live with the disease, and sign a petition to urge Congress to provide more funds for lupus research, education programs, and support services.

Interact with world-renowned lupus experts

The tour includes a patient education program where people with lupus and their families can interact with world-renowned lupus experts to learn more about the disease. In addition, healthcare providers can attend Continuing Medical Education (CME) events on the biology of lupus, organ system effects, diagnosis, and treatment.

more…

Learn more about the ALA lupus awareness bus tour, new education programs, and ways you can get involved in the fight to end lupus, by visiting LFA’s special site, cruelmystery.org.

You can also help like I did, by adding your comments about lupus at Lupus Voices Across America™

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 neuropathy on the way to breakfast

Breakfast Feast

We had a wonderful time this morning hosting breakfast for the family clan, and celebrated three birthdays over a brunch feast.  Getting ready for company last night after working all week was a bit of a challenge.  Against better judgment, I ended up staying up after midnight putting the finishing touches on my house.  I really like to make sure guests in my home feel comfortable, and for me that means making sure things are orderly and clean.

Where’s the balance?  I’m really not sure, but I keep trying to find it.  I must admit, last night was not balance!  At midnight I got the fruit tray ready, washing the grapes, strawberries and pineapple chunks,  and set the rinsed bananas out for the morning, leaving just enough room on my fruit platter to pile up some halved bananas.  By the time I was sure everything was “done, it was a couple of hours after midnight. “

Blame the dog?

After I finally found myself in bed in the dark, I realized I had stayed up late enough that peripheral neuropathy leg pain rapidly kicked into full gear.  Although I tried to fall asleep, it just wasn’t happening!

After laying awake the dark, I became annoyed as our little dog at the end of the bed kept sitting on my painful legs, shifting around and making continual noises.  Most nights we let him lay quietly on his blanket on the end of the bed. while we watch some TV and occasionally nibble on popcorn.  He usually attempts to be a good little dog, but is often beside himself with exuberance until we break down and toss him a piece of popcorn.  If he is quiet and we fall asleep, once in a while he gets the prize of sleeping on our bed all night.

However, after his prolonged and irritating antics during my slumber-less night, it wasn’t long before I ushered him swiftly to his kennel and crawled back in bed to try again.  Maybe I could blame the problem on the dog!

Soothing sound of waves

I picked up my Nook Tablet from the bedside table and found its “white noise” application. After sampling several noises of birds, wind and waves, I settled on surf rhythmically crashing into some unknown shore.  It was soothing, and if not for the neuropathy pain, I would have probably slipped away into pleasant slumber, dreaming of  driftwood on the make-believe surf.  In the long darkness, the white noise timer shut down an hour later, but still  I was sleepless and enduring painful surges of persistent neuropathy pain.

Calming sound of rain

Wary that taking strong medication for my pain would make waking up in time for 8:00 a.m. company difficult, I finally got out of bed a second time looking for an alternate solution.  A microwaved quick latte made with decaf tea, warm milk and honey actually helped increase my wish to sleep, but the neuropathy still was relentless.  As a last resort, I went out to my leather chair and reclined with my Nook in my lap playing white noise sounds, this time of a calming rain shower.  I finished my soothing latte and decided to sit out the night in my chair, since it was the most comfortable and close to sleep I had been in two hours.

Rested enough to enjoy breakfast

At last, sleep overtook me and brought three hours of precious sleep.  My husband found me asleep in the living room at 5:30 a.m. and woke me gently.  He encouraged me to finish  slumbering back in the comfort of bed.  Now I was finally sleepy enough to catch a few more serious winks on my pillow.  Morning came much too early for my tired lupus-challenged brain, but at least, I had enough sleep to thoroughly enjoy our early morning family gathering.

As for tonight, no midnight housework or cooking.  Instead, for me it is “early to bed” after such an “early to rise” morning!

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.