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 Adventurer reflects on the first Christmas

One Perfect Lamb

Down from the glory of eternity’s home,
a baby was born as a carpenter’s Son.
Willing so humbly to enter our world,
Creator and Master, the Savior did come.
History splitting, prophecy fulfilling, sin forgiving,
life transforming man,
Jesus Christ, both Son of God and son of Joseph and Mary,
a miraculous plan.

Three decades passed without one wrong or sin,
lived as the One Perfect Lamb.
He offered Himself, life and blood for man’s sin.
Buried three days, He arose up again!
Overcoming sin, death, sickness and the grave,
giving life unto all reborn men he would save.
Accepting His gift, true forgiveness is found,
New life, new joy, and truest Christmas blessings abound!

Thank you for letting me share my poem from two Christmases ago with you this year.

Jesus Christ is my reason for Christmas!

Merry Christmas,
Lupus Adventurer

Copyright 12/24/2010

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 remembering a few of my favorite things

Raindrops on roses

What are my favorite things that somehow connect with my lupus?  How can my favorite things make a difference? There are so many good things in life to cherish and celebrate, no matter how difficult our limitations and challenges may be.  I am very thankful for a few new favorite things that are part of my life with lupus.  Some of these new favorite things have filled the void created by the things are no longer part of my life, because of lupus.

I am reminded of the Rogers & Hammerstein musical, The Sound of Music, when Maria and the Von Trapp children burst into one of the all-time favorite songs of my childhood:

Whiskers on kittens

Raindrops on roses and whiskers on kittens
Bright copper kettles and warm woolen mittens
Brown paper packages tied up with strings
These are a few of my favorite things

Girls in white dresses with blue satin sashes
Snowflakes that stay on my nose and eyelashes
Silver white winters that melt into springs
These are a few of my favorite things

Warm woolen mittens

When the dog bites
When the bee stings
When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad

Here are a few of my own favorite things, sans the singing:

Cycling and swimming and gardens with butterflies,
Cooking in the kitchen, and crows feet with kind eyes,
Freshly mown grass and my favorite porch swing,
Wind in the branches and birds as they sing.

A husband who loves me!

Friends who listen and people that care,
Playing the piano, with a hymn in the air,
A husband who loves me, and being his wife,
Together, we can weather most any tough strife.

When the pain strikes, and neuropathy stings
And my lupus gets bad,
I try to remember life’s many blessings,
And think on the joys I’ve had.

Think on the joys!

Lupus and the best of the red, white and blue!

Today, we celebrate freedom!

Today, in the United States of America we are celebrating a national holiday, the anniversary of the declaration of our independence as a nation.  Our exceptional country, founded as a nation that protects personal freedom and liberty for all citizens.  I am, without excuse or apology, both a lupus patient and a patriot!  As a lupus patient, I also celebrate and thank God for many things in our country that impact lupus patients positively.

Many things together have helped make our country the most favorable place in the world to live as a lupus patient, and these all contribute greatly to the health and quality of treatment of people with chronic illnesses, such as lupus:

Best of the red, white and blue!

• Available medical care from the best system of well-trained doctors in the world
• Liberty to choose which doctor I will visit and choice to see any doctor on my health insurance plan, or to pay extra if I can afford it to see another doctor or specialist of my choosing
• Protection from discrimination due to illness or disability, protection for my medical privacy, and protection of my job when lupus interrupts my ability to work through laws like the Family Medical Leave Act, the Americans with Disabilities Act and the Health Care Insurance Information and Portability Act
• Drug companies that offer programs to pay the co-pays and drug costs for patients that need help
• Bankruptcy laws that protect me from financial slavery in the event I cannot pay unexpectedly huge medical or other bills
• Social Security and Medical Care funded by other taxpayers for persons who are unable to work because of disability
• Open access to public libraries and internet medical information sites provided free of charge
• Attorneys in our legal system that aid patients with navigating the disability application process, and are paid only if and when they help secure a patient’s benefits
• Lawyer’s professional ethics requirements that they donate a certain percentage of their work to people who cannot pay for their services, such as underemployed or unemployed lupus patients or others with limited resources
• Special parking laws, placards and plates that give close access to buildings for disabled persons and require wheelchair access everywhere
• Communities all over our country that fund no-cost or reduced-cost transportation for disabled citizens
• Major retail corporations and pharmacies that willingly offer lists of hundreds of common medications at low ($4 to $5) costs
• Tax exempt status for non-profit organizations such as The Lupus Foundation of America, and its many local chapters that support lupus patients, lupus research and support services and for lupus patients, by encouraging benevolent tax-free giving by citizens and corporations
• Federal and state tax laws that give deductions for high medical treatment and transportation costs

Celebrating our precious freedom to vote,
and to exercise our will as a people!

And lastly, I celebrate the wisdom of the voters in all of our great states, who watch the ongoing decisions of their elected representatives.

We cast our ballots in local and national elections and exercise our liberty to check any failure to represent our wishes.

We have the recurring ability as voters to correct any dangerous or uneven balances of power that could harm our freedom or well-being as citizens of this great nation.

God bless the adventure of freedom in our great nation!

God Bless America!

Lupus and Benlysta – after 10 months & infusion #12

12th Benlysta Infusion

This week I received my 12th Benlysta infusion, and am glad to report moderate success with it as a contributor to controlling my lupus.   While I had keenly anticipated it might be as miraculous as the Rituxan (Rituximab) infusions I received several years ago, it has fallen far short of that hope.  However, the drug I received during the phase three clinical trials of Rituximab proved to have remarkable effectiveness for some lupus patients, but treatment with it presented grave danger for others.

While I entered a five-year dramatic near remission of my lupus after receiving just two infusions of Rituximab, a few unfortunate patients in the clinical trials lost their lives to a fatal brain infections.  A normally harmless common childhood virus was re-awakened in some of the clinical trial patients, causing their untimely deaths.  The number of these deaths was compared to the total number of patients in the trial, and it was clear the fatalities were too many to be a coincidence.

Benefits v. Risks

Benefits of effective drugs may not outweigh the risks

The Rituximab deaths demonstrated that lupus patients seemed to have too much risk to take the drug, and the excitement about Rituximab as a treatment for lupus cooled off quickly.  The FDA did not approve it and many insurance companies will not pay for Rituximab to treat Lupus.  Although Rituximab is FDA approved and widely used with outstanding results for rheumatoid arthritis, certain cancers and many other auto-immune diseases, Rituximab proved much too risky for lupus patients.  The potential benefits of Rituximab for Lupus clearly did not outweigh the great risks.

I also thank God for many answered prayers and His gracious protection through the clinical trial, and that I was spared from developing a horrible infection.  I am thankful for the many people who prayed for me during the time I was receiving Rituximab* infusions, knowing there were possible great risks, and even a remote possibility of death.  Although I was more concerned about a possible allergic reaction, there was an even greater risk from infection revealed during the trial.

So, I now continue to take Belimumab infusions, and do enjoy its moderate help with controlling my lupus. Still,  I cannot help but wonder how I might feel right now if Rituximab had been safer, and if it were still available to me.  One of the important issues patients must realize when they take part in clinical trials, is that, although they may feel great in response to new drugs being investigated, the medication being studied may not continue to be available.  If access to drugs taken in a clinical trial stops and they are not approved by the FDA, then participants must be ready to accept a return to using less effective drugs and a possible return to more active lupus.

safe “okay” is better that dangerous miracles

“Okay” with safe drugs is better than dangerous miracles

For me there is some clear amount of disappointment to cope with after having received both Rituximab and Belimumab infusions.  But, still I am very thankful for the five years of dramatically improved health that I enjoyed after Rituximab.  I am also very thankful to for the slower, but clearly modest improvement of my lupus after ten months of Belimumab infusions.

Although after almost one year of Belimumab I hoped to feel absolutely wonderful, instead have to describe how I feel today as just “okay.”  Okay is better than where I was  a year ago, and that is still very important progress in treating my lupus.  It is not miraculous, like Rituximab seemed to me, but it gives acceptable improvement.  I’ll take it and thank God daily for the ability to receive this helpful and safer FDA-approved treatment.

opportunity to make a difference

Participation in clinical trials makes a difference

It is also very important to me to know that my participation in a clinical trial contributed to the greater process of helping find new drugs that are safe and effective for treating lupus.  Even though the drug I took did not ultimately become a help to future lupus patients, the clinical trial helped in other ways.  If not for patients like me, being willing to put their hopes and health at some level of risk, new drugs would never be found for lupus.

The safest trials to take part in are phase three clinical trials, when medicines are tested that have already proven effective in phase one and phase two trials.  The phase three trials help verify appropriate doses, and measure how effective the drugs are in treating a specific disease.  Phase 3 trials help doctors know 1) how much medicine to give, 2) how often to give it, and 3) how well the medicine works. Progress in finding these new drugs would never be reached without patients and their doctors being willing to participate in the lupus adventure and risks of joining a clinical trial.  I am still grateful for that opportunity to make a difference.

*[Errata:  The incorrect word "Benlysta" was deleted and correct word "Rituximab" was inserted after publishing.]

Other posts about Rituxan and Benlysta:

Lupus Rituxan treatment denied by insurance company
Pending FDA approval of new lupus drug Benlysta
Lupus, and Benlysta in my future…
Benlysta Infusions for Lupus – Day One
Benlysta infusions for lupus – Day 15
Benlysta Infusions for Lupus – Day 30
Benlysta Infusions for Lupus – Day 60
Benlysta Infusions for Lupus – Day 90 – Thanksgiving
Lupus and Benlysta after 21 weeks
Lupus post-infusion infection, steroids and the E.B. effect
Benlysta & Rituxan infusions for Lupus: the tortoise and the hare
Lupus and Benlysta – 25 Weeks and Infusion #8
Lupus, Benlysta infusions and almost glorious mornings
Lupus and postponing a Benlysta infusion
Lupus, singing and a visiting hummingbird
Lupus and Benlysta after 7 months – Infusion #9
Benlysta infusion #10 while pondering the good, the bad and the ugly of lupus
Diagnosis and Treatment of Lupus: Fact #12 – Lupus requires multiple medicines!
Prognosis and Hope: Lupus Fact #28 – Normal life span expected with current treatment standards
Prognosis and Hope: Lupus Fact #31 – Lupus research lengthens lives!

Understanding Lupus Fact #2 – Lupus unfairly discriminates

Understanding Lupus: It doesn’t seem fair, but lupus definitely discriminates.  Although our federal laws forbid discrimination based on gender, there are no laws of auto-immunity that follow those edicts.  Unfortunately, 90 percent of the people who develop lupus are women.

Lupus further discriminates because it is two to three times more prevalent among women of color — African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders — than among Caucasian women.  However, despite its bias toward women, and especially women of color, when men develop lupus, their disease can be more severe and organ threatening than lupus in female lupus patients.

If one member of a family has been diagnosed with Lupus, other members of their immediate and extended family should be alert to possible symptoms of lupus  About 5 percent of the children born to individuals with lupus will develop the illness.  20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.

Discriminating Lupus!

Of all the discriminatory impacts lupus can have on women and women of color, the one that gives me the greatest concern is that elderly black women lupus patients have the highest rate of mortality, as compared with all other groups of lupus patients.  Early diagnosis and treatment of lupus patients helps reduce mortality and improve quality of life.

Lupus and my theme song – singing in the rain!

Singing in the rain

If there were one well-known song that would best be the theme song for this blog, it might well be “Singing in the Rain.”  Click above to watch the You-Tube video of the original Gene Kelly rendition of this fun-filled ditty.  This was a favorite of my mother and I as we would walk arm in arm in the afternoon San Francisco rain.  I miss her, and the California rain.  For the rest of the story, see the About the Adventure page of this blog.

Butterfly in the rain...

Whether sunshine or rain, the goal of this blog is to present the positive, but realistic side of the lupus adventure.  That means that there are times when we can choose to walk along, singing in the rain, rather than moping over the inclement weather.  We can’t really control the weather or our lupus.  Whether life gives us lemons, like the ones that grow on the tree in my Arizona back yard, and then we choose to make the proverbial lemonade, or whether we chose to smile and sing during the storms of life, we can to choose to look at our lupus experience from the positive angle.  From this vantage point, we can count the blessings and find the good things lupus does not have the power to take away.  We keep lupus in its place, and sing and dance a little, sometimes, even when we don’t feel like singing at first.

Music has great power to lift the spirit

Singing has a subtle emotional and spiritual impact, and it raises our endorphins, elevates our mood, and even has a place in lowering the perception of pain.  Music is one of the most powerful art forms for its dynamic effect on the human mind, body and spirit.  Music can motivate and captivate, and its potency to influence is woefully under esteemed.  Martin Luther called music “the universal language.”

The next time our Arizona weather turns to summer monsoon rains, if you pass by my house, you might just catch a glimpse of me stepping outside to while I am singing, dancing and puddle jumping in the rain showers.  There is something very, very therapeutic about the exercise of puddle splashing with song and dance.

You will never know until you give it a try!

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

Easter conversation in my heart

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

The Bible tells the Easter story

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

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

Empty tomb

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

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

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

Easter celebration!

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

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

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