Lupus fatigue midst the hope that springs eternal

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

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.

Montreal report shows possible connection between lupus activity and smog particulates

Photo credit Ben Amstutz, used with permission

Today, I read in Environmental Health News about a 2010 research report about lupus and environmental triggers.  A lupus treatment center in Montreal studied the possible connection between pollution and lupus flares. Citywide collection of smog readings and lupus activity for over two hundred lupus patients were reviewed over a seven-year period, leading to evidence of a possible connection between a specific smog component and increased lupus activity.

This is one of the first reports to study a connection between smog and its possible affects on lupus activity.  To read the full report, please visit the following link.  PM 2.5 Pollution Linked with Lupus Activity

Smoggy Bay Area

Smoggy Beginnings

My own connection to unhealthy smog exposure dates back to my early childhood.  I grew up in the San Francisco Bay Area, and developed allergies to the region’s smog.  I remember my doctor talking to me about my condition he called “bay area throat” in the 1960s and 1970s, described then as a regional phenomenon connected with smog irritation.  I can remember summer smog alerts when I was a child.   Late summer climatic heat inversions trapped the brown smog laden air near the ground and caused rare hot weather around the Bay Area.

After high alert smog exposures, I would often develop respiratory congestion with symptoms of inflamed vocal chords and a hoarse voice.  This was a great recurring frustration when I was studying classical music and voice performance at the university there!  One time years after leaving the San Francisco Bay Area, I returned to my home church in the East Bay to do a concert with my singer/pianist husband, and lost my voice with the same symptoms.  He had to perform all by himself!

High smog exposure levels in cities

Smog exposure commuting

While living in Phoenix, I was eventually diagnosed with smog-connected nasal allergies, long before also receiving lupus and asthma diagnosis.

My own lupus was not diagnosed until my early childbearing years.  After my second child was born, my ever-changing symptoms showed distinguishable patterns and I was finally diagnosed with lupus.

Smog exposure commuting

Over the next ten years, I commuted to my jobs in Phoenix law offices every day on the city bus, usually switching buses at points in the heaviest morning commute corridor of the city.  Over those years, I had daily exposure to some of the heaviest concentrations of smog possible in Arizona, and according to an article I read, one of the ten most polluted areas in the country.

Perhaps any connection with smog in my auto-immune history is a coincidence, but perhaps smog components were one of many causes or contributing factors to my development of active lupus.  This type of possible environmental trigger should be studied more to help find or rule out smog as a possible link to triggering lupus and its flares.

Avoiding smog while commuting

Avoiding smog exposure

I no longer commute on the bus for several health-related reasons:

1) Waiting for buses and walking several blocks to my destination provides too much sun exposure for my lupus and causes skin rashes and other lupus symptoms to flare.

2) My lupus arthritis prohibits my ability to walk any measurable distance.

3) Exposure to the smog aggravates my allergies and asthma, which when flared, also seems to trigger flares of my lupus.

Consider healthiest commute alternatives

Now, I drive my car a total of almost 50 miles each day commuting four days each week and telecommute the fifth day.  While driving, I keep my car windows closed, my air conditioner on (it is Phoenix, after all) with the fan set to circulate the air inside my car.

I shun the smog as much as possible!  Whether or not this helps my lupus or not, I do know it helps my allergies an asthma.

My advice to other lupus patients is to carefully consider your form of transportation carefully.  If you show any worsening of symptoms that seem triggered by exposure to smog or other environmental elements, talk to your doctor about it!

Read more about smog and health/lupus:

• The Mayo Clinic article Non-allergic Rhinitis Risk Factors identifies lupus as a risk factor in upper respiratory conditions.
• The Lupus Foundation of America lupus expert Dr. Mark Gourley in Lupus and the Environment discusses air pollution and other possible environmental triggers for lupus.
• A Science Daily reference article, Pollution, mentions a possible lupus connection to air pollution.
• In the medical journal, Epidemiology an article on Long-term Exposure to Air Pollution and Increased Mortality in Lupus by the University of North Carolina School of Public Health, the U.S. EPA’s National Center for Environmental Assessment, the National Taiwan University Department of Bio-environmental Systems Engineering, and the San Diego State University Department of Geography provide epidemiological evidence supporting the novel hypothesis that particulate air pollutants increase mortality in lupus, likely through cumulative cardiac damages.
• In the US National Library of Medicine, National Institutes of Health, Environmental Health Perspectives Journal, a 2011 report on Associations between Ambient Fine Particulate Levels and Disease Activity in Patients with Systemic Lupus Erythematosus (SLE) discusses the above-cited Montreal study on the potential influence of particulate matter (PM) air pollution on clinical aspects of SLE.

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, tendons and the happy sometimes pedestrian

Shopping in shoes that hurt

There is nothing more difficult to bear than walking in shoes that make your feet hurt.  When lupus focuses on the tendons in my feet and ankles, my ankles swell and it seems no pair of shoes is comfortable.  Usually, I have worn my high quality sneakers to go shopping.  Lately, I have worn them to work with slacks to baby my swollen tendons.  However, on Saturday, my sneakers were soaked in a deep puddle during the morning’s drenching rain storm.

Sneakers soaked in a deep puddle!
Photo credit:
http://theshoegame.com/articles
/nike-air-flightposite-photography.html

Even in Arizona, we have very cold weather in January and February, and with several days in a row of non-stop rain, it was too cold to wear wet sneakers on a shopping trip.  I slipped my prescription orthotics into a pair of reasonably comfy flats, and set out shopping on Saturday.  What a mistake!

Let me back track a little and explain.

I had put off shopping for a family member’s birthday as long as possible because of the inflammation in my joints for the past couple of weeks.  Now, my time was gone to buy some other gifts I also needed, so Saturday was my last available chance to shop for them.

Gift Shopping on Sore Feet

Before I was finished shopping at the first store, my feet were hurting and the back top edge of my shoes was riding too low on my heel because of the orthotics.  The shoe back was pressing into the back of my aching Achilles tendons, and very soon I could hardly take another step.  My feet were not going to last the afternoon without some serious intervention!

As soon as possible, I finished up quickly at the first store and then hobbled to my car to drive to the nearest Kohl’s department store.  I had only one mission in mind to do first – I would buy some new, comfortable shoes before destroying my tendons in what I was wearing.  I was determined that giving up on the shopping trip was just not an option! I thought, maybe I could also find something that looked better than sneakers to wear to work on lupus flare days.

Let me give a little more background.

Lupus Patient who shredded
her Achilles tendons

I know a lupus patient who shredded her inflamed and swollen Achilles tendons when she was in lupus flare several years ago.  Now, she is wheelchair bound without hope of repair for her ruined tendons.  Then, a few years ago I shredded one of my own Plantaris tendons where it branched off the Achilles tendon in my right calf.  At the time, I had been in a lupus flare and was performing some mildly athletic activity.  Unfortunately, I forgot to consider the risk of tendon injury during flare.  Then a couple of years ago, I came within a few steps of shredding the tendons in my heel while walking back and forth between the hotel and events at a legal conference in Boston.

Therefore, now, I am very, very careful when my tendons are swollen or sore.

Achilles tendon injury
Photo Credit:
http://www.scripps.org/articles/
3372-achilles-tendinitis

By the way, shredding an Achilles or Plantaris tendon is suddenly and excruciatingly painful.  While my torn Plantaris tendon hurt a great deal and grounded me for a couple of days, I understand that an Achilles tendon is much, much worse.  When the Achilles rips, it has been said to feel like a gun shot in the calf.  Plantaris tendons are optional, but Achilles tendons are essential when it comes to walking.  Since I like being able to walk, I really like the idea of keeping my remaining leg tendons as healthy and whole as possible.

Ultra-light, comfy and supportive

So, my Saturday shopping goal was achieved before the afternoon was over.  First, I found the new pair of shoes that helped me finish the rest of my procurement mission.  I found a pair of Sketchers Go Walk slip on shoes that are now my new favorites.  They were a little more pricey than I would have liked, but are light as a feather, and are amazingly comfortable and supportive.

I have even worn them to work for the past two days.  I think they have contributed to the improvement and healing of my sore foot and ankle tendons, because tonight, my feet and legs are much less painful.

Walking today with little pain

Today, I walked between buildings across the campus of my workplace without hurting my feet and ankles, and was even able to keep up with my associate as we crossed the plaza. For the past three days, my feet have been better than they were at the beginning of my Saturday afternoon shopping expedition, or for that matter, at any time in the past two to three weeks.  What a relief!

Tonight, I sit here as a much more comfortable and happy sometimes pedestrian.

[Note:  The product endorsement contained in this post is unsolicited and completely uncompensated.]

Come to see the butterflies, and leave with lupus awareness

Come to see the butterflies…

A significant number of people who visit my blog find it through search engines like Google, Bing, and Yahoo.  Since this blog is primarily about lupus, one might think that everyone who finds it is looking for information about lupus.  While that is true for many visitors, a good number also follow links here because they are looking for images of butterflies (maybe because they like butterflies as much as I do!)

No matter why people might find this blog, I am glad that everyone can leave with greater lupus awareness.  This is a place where both butterflies and lupus awareness can be found in abundance.  If you want to know more about the connection between lupus and butterflies, check out my April 24, 2012 post, “Lupus and it’s mascot: butterfly or wolf?“.  This quickly took the “LAward” for the most highly read post on this blog, well into tens of thousands of reads!

And leave with…

So, if you are one of those who found me because you were seeking butterfly images, welcome!  I trust you will take a moment to learn a little more about lupus, perhaps by stopping for a few minutes to read a post or two.  You will find at least one butterfly picture in every blog post.

If you want to find out more about lupus, please read the “Lupus Medical Information” page of this blog.  It will take you to a page with basic information about lupus and links to more detailed authoritative information.  I suggest at very least visiting the Lupus Foundation of America at www.lupus.org.

If you just want to see the pretty butterflies and don’t feel like reading about lupus, no problem!  Please just click on the “Butterfly Collecting Adventures” button or browse through posts to see the butterflies on each, and enjoy.

My hope is that maybe you will do both — enjoy the butterflies and learn more about lupus!

If all you really want is a postage stamp summary of lupus, and no more, here are a few quick points:

• Lupus is a systemic connective tissue disease in the same family of auto-immune illnesses with rheumatoid arthritis affecting skin, organs and other tissues and body systems.
• Many lupus patients have skin rashes, arthritis, fatigue, mental clouding, mouth/nose ulcers, a butterfly shaped rash on their cheeks and are positive for antibodies against their own body cells such as ANA (antinuclear antibodies).
• Lupus can attack the kidneys, and is a leading cause of kidney failure.  50% of lupus patients have some level of kidney involvement.
• Lupus is difficult to diagnose, because it affects so many systems of the body, and can easily be confused with other diseases.
• Lupus affects each person differently, and can change suddenly and unpredictably in the same patient, going in and out of flares and remission.
• Although lupus is potentially fatal, if found early enough and treated properly Lupus can be well-controlled.
• Most patients can live a normal life span with little or no organ damage with standard treatments.
• Lupus is an important women’s health issue – it discriminates unfairly against women and minorities.  90% of lupus patients are women.
• Lupus is more prevalent in women of color: Hispanic, black, Asian, and American Indian women, with the highest mortality rate in elderly black women.

Lupus awareness…

Lupus awareness is very important, especially for those people who don’t yet know they have lupus.  For example, many people know enough about diabetes to recognize possible symptoms in another person, and would urge someone with diabetes symptoms to seek medical advice.  So, also, knowing enough about lupus to recognize its common signs and symptoms in a friend or family member could make a great difference, or possibly even save her life.

Lupus awareness is very important.  Although there is no cure yet, there are new and exciting medications, treatments and ongoing research that can help prevent lupus from destroying the health of those who have it.  Because one out of every 150 people has lupus, it is very likely that someone you know has lupus.

Thank you so much for stopping by, even if it was just to see the butterflies.  If you learned a little about lupus, even better!

Thank you for visiting
Lupus, the Adventure Between the Lines!

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.

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 arthritis and a string of things

Arthritis and difficult activities

Some of us lupus patients and those with similar types of inflammatory arthritis find that activities of daily living are sometimes nearly an insurmountable challenge.  Sometimes, with inflammatory arthritis, just doing normal everyday activities of life becomes much more difficult than we would like!  Lupus, psoriatic, rheumatoid, gout or other auto-immune or inflammatory arthritis can affect hands, wrists, elbows, shoulders, hips, knees and feet.  The inflammation and pain can impair normal functions, and can be very frustrating at times.

Thankful for what I can do again.

As I was driving to work this week, I pondered a list of some everyday things that lupus arthritis has affected in my personal life. Somewhat recently, I after ten years off of the NSAID Sulindac due to remission of joint inflammation, I started taking it again.  I was greatly relieved that, when added to my other lupus medications (Benlysta, plaquenil, prednisone) the resumed prescription NSAID relieved most of my arthritis symptoms.  The severity of increasingly painful and disabling arthritis in my hands was greatly reduced.

I have the use of my hands back!  I was thankful as I thought about these simple daily activities that I can do again or at least do better.  Just a couple of months ago these activities were at times excruciating and nearly impossible:

Mornings

holding a hair dryer
clipping fingernails
buttoning clothes
putting on pantyhose
buckling shoes
fastening a necklace or bracelet clasp
opening pill bottles
sealing a zippered sandwich bag
pulling the foil seal off a coffee creamer bottle
opening my favorite thermal Starbucks mug

Out and About and at Work

opening a car door
opening binder rings
using a stapler
opening a new bottle of soda
opening a plastic packet of Taco Bell sauce
carrying a shopping bag
walking through a shopping mall
climbing a flight of stairs
putting a case of soda into a shopping cart
pulling credit cards out of a wallet
opening plastic merchandise packages

Evenings

turning the key in a stiff lock
cutting uncooked meat with a knife
turning on appliance switches
opening a soda can or bottle
turning the knob on my can opener
holding a heavy skillet
stirring stiff cookie dough
pushing down the faucet sprayer button
taking off boots
scrubbing dishes

Weekends or Anytime (some of these I still can’t do)

turning socks right-side out
doing the laundry
changing bed sheets
moping a floor
pulling weeds and grass in the garden
walking up stairs
washing my car
playing my violin

Vacations (these are still on the “no” list)

Walking through amusement parks in the daytime
Roller coasters
Canoeing (part of my past)
Hiking

My choice how to respond

When each of these actions is difficult and painful to do through out my day,  I have a choice how I will respond to the frustration and difficulty of the moment.

Can I make the pain go away in that moment?  No.

Can I by wishing it so, make my joints strong and healthy again?  No way.

Can I make my lupus go into remission, or better yet go away?  Certainly not!

However, I can adjust and do things in new ways, slow down, pace myself, and at times humble myself to ask others to help me with what I cannot do myself.

Sliver of light of God’s wisdom

I resolve to not let this minor string of daily inconveniences steal my joy!  Perhaps, if I can just borrow a sliver of the light of God’s wisdom, I can then see reasons to thank Him for these present difficulties.  Out of the little struggles of day-to-day life such as these, our character is formed.

Perhaps, a new list of things that I can still do, despite my lupus, could be prime mental fodder for my next commute.