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

Registration & Check in Area

Walk Day

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

Key LFA Staff Joined Us

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

Many sponsors supporting the walk

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

Walk T-shirts & Prizes

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

Anne from Glendale, AZ

Today’s walk was a complete success!

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

Liz and Friends after the Walk

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

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

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

Finishers Cross the Line

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

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

The winning team raised thousands!

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

The day after the walk

The day after the walk…

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

My husband, advice giver and walk volunteer!

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

Lupus is unpredictable!

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

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

Thank you, donors!

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

More walk pictures…

Living with Lupus: Fact #22 – Not so beautiful butterfly rash!

Living with Lupus: The malar, or “butterfly” rash on the face is present in about one-third of those with systemic lupus. This flat, reddish rash across the bridge of the nose and cheeks, is often the only visible symptom of this form of lupus.  Before I was treated for lupus, a malar rash showed up on my face many times.  As a teenager, my mother was intrigued by the deep purple splotches I had over my cheekbones.

Faces of malar rash

Malar rash is one of the eleven diagnostic criteria for lupus.  After my treatment with Plaquenil, the standard medication for all lupus patients, most of the vivid pigmentation of malar rash quieted down.  Now, malar rash shows up after getting too much sun, or during a flare. To prevent over exposure to sun, I wear a large hat and just try to stay out the heat of the day.

Is it malar rash or rosacea?

The Lupus Foundation of America (LFA) provides this important discussion about malar rash, and compares it to rosacea:

“The butterfly blush or rash is a faint or prominent red rash over the malar area and the bridge of the nose. The rash does not go into the sides of the nostrils or down the fold between the nose and the outer part of the lips. These areas are always spared and look white in contrast to the red rash of the cheeks and bridge of the nose. Sometimes the rash is flat, and sometimes it is elevated. It may be in the form of red blotches or may be completely red over the area. The rash may be itchy, especially if it looks more like a rash than a blush. This rash is typical of SLE but is present in only about 30 percent of patients.

The butterfly rash is often confused by patients and by physicians with a similar red rash which also is over the cheeks. This rash is called acne rosacea. It does involve the areas of the outside of the nostrils and does involve the folds between the nose and the outer part of the lips. In addition, pimples may be seen on top of the red rash in acne rosacea.”

Malar rash or rosacea?

Treating malar rash is best accomplished by treating the lupus, and usually Plaquenil is prescribed.  Patients are encouraged to stay out of the sun to avoid excessive UV exposure, which triggers the rash.  Here are some tips the LFA recommends for reducing sun exposure:

1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

Not make up, it is malar!

Lupus malar rash and an unforgettable social reaction!

Once, I had very uncomfortable and unforgettable moment at work because of my malar rash.  A woman who really didn’t like me or our managing attorney very much began belittling me in front of other co-workers.  I was bewildered as this woman began broadcasting her catty critique, “didn’t you get a little too carried away with your rouge this morning?” assuming the unbalanced redness on my cheeks was because I had used my cosmetics without skill.

I will never forget standing there, with my mouth gaping, wondering what in the world she was talking about! I wasn’t even wearing any cosmetics that day, not even lipstick.  Unbeknownst to me, my malar rash had erupted during my morning bus ride to work from the sun exposure during my three block walk to my office.  I had not looked in mirror since leaving my house, so I was caught completely off guard by her stinging comment.

Forgive the unkind, unaware, rude people

This woman had an unkind habit of making fun of people to try to lower other people’s opinions of them, I suppose in misguided efforts to try to make herself  look better.  It is sad that some people think that making fun of someone who is different, albeit diverse from themselves, is somehow a social “sport.”  I think that people who act this way should actually be pitied, and even prayed for, but not hated — because of their lack of wisdom, kindness, insight and understanding.  They reveal the true shallowness of their own soul by their rude acts, and they completely miss out on the rich blessings that kindness produces in relationships.

Fortunately for me, a couple of coworkers who were the intended audience for her unkind “put down,” instantly arose to my emotional defense.  Without me saying a single word in retort, a couple of other coworkers immediately engaged the woman and publicly shamed her for her rudeness toward me.  They spoke directly to her and harshly condemned her behavior!  Others standing by in the room joined in a spontaneous chorus of rebuke.  My coworkers who knew about my lupus recognized it as the cause of my overly red cheeks. After confronting my critic, they turned to me with many encouraging comments.  As for me, for once, I was speechless!

Grateful for lupus awareness

In retrospect, I was very thankful most of my coworkers were lupus aware, and cared enough about me to take up my cause and handle this woman’s rudeness through a little well-timed peer pressure.  Later, I overheard a “water cooler” discussion among other members of the office about their disbelief and disapproval of the woman’s social crudeness, judging it grossly inappropriate for the woman’s supposed professional, economic and social class.

This woman’s stack of degrees and professional position did not impress anyone that morning, but lupus malar rash certainly had an unexpected impact on my day.

[NOTE:  This post was inadvertently published unfinished at 7:00 a.m. using the pre-scheduled posting feature, before I had really finished writing it and including the personal story I felt was very important to share.  When I realized that this morning, I went ahead and completed it over coffee this morning, and re-published the updated version at 9:30 a.m.  My apologies for making major changes to a post after its initial release.  LA 5-22-2012]

Lupus Adventure’s memory of an ideal, perfect day

Birthday mountain escape

A few years ago was one of those absolutely ideal days that take your breath away and become timeless memories in the patchwork of life. The day was in mid September, on my husband’s birthday, when the blistering heat of Arizona summer still gripped the Phoenix valley and surrounding cement jungle like a sweltering heavy blanket.

We escaped up winding mountain roads to the north for the day, planning to poke around one of Arizona’s rural mountain cities. We found ourselves in the small town county seat of Prescott for breakfast. Sipping coffee and enjoying a quiet morning meal, our café table looked out on the picturesque town center and court building.

Prescott Town Center

The day’s weather was dreamy, with a perfect balmy breeze tossing the leaves and our hair gently as we strolled along through antique shops and other small businesses in the town’s historic district near the town center.  After a while, we picked up a picnic lunch and drove around the wooded town for a few minutes looking for a good spot to enjoy the perfect climate and eat outside.

Always looking for shade, mostly because of my lupus sun sensitivity, we delightfully discovered  just the right spot!  Gathering our lunch, and me donning my sun hat and sweater, we entered a beautiful shady park carpeted with lush green grass, and surrounded by a border of towering mature trees.  The park’s leafy canopy created an inviting and seemingly secluded shady green oasis for our noon meal.

Williams Granite Creek Park

We stretched out the picnic blanket on the grass under some trees, and enjoyed our lunch, lingering for what became a whole afternoon of rare perfectness. There were a few visitors that briefly shared our quiet mountain retreat: a family with a couple of cheerful laughing children playing at one end of the park, a younger couple that passed through strolling together and quietly chatting, and a pleasant young man with his playful golden retriever who stopped to visit us briefly and pass the time of day.

Because we had taken a vacation day off from our jobs to spent the day together, most of the town’s residents were in school or at work that day.  For that reason, there were few other visitors, and for most of the beautiful afternoon, we had the park to ourselves.  We visited peacefully in the dappled shade of our secluded resting place at the midst of the park’s grassy expanse.

Reclining on our blanket and chatting about our dreams and thoughts for hours, eventually we both drifted off into the calm rest of an unplanned peaceful afternoon nap.  After an hour or so in a dreamlike sense of complete physical relaxation and utter peacefulness, I was still laying there quietly stretched out on my back when I first awoke.

Eyes closed and listening

I held my eyes closed while I listened.  I heard my husband gently snoring beside me on the blanket, the breeze was rustling through the leaves in the trees above, a few birds were singing and chirping all around us in cheerful chorus, and the faint buzzing of a few bees could be heard nearby hovering over the lawn.  I remained motionless for the longest time, breathing in deeply and drinking in the mingled sounds.

The slightly warm breeze quietly brushed my closed eyes and lashes, touched my upward turned face, and barely moved the hair around my face.  I didn’t even want to open my eyes, for fear the magic spell and stillness of the blissful afternoon would be broken.   Later, after we both finished napping, we and stayed on and cherished the rest of the afternoon, remaining until the last rays of light began to disappear through the tall trees and the cooling breeze penetrated our light sleeves.

Headed home

As we drove back to our home in Phoenix, heading back toward our children, home, blistering heat and the real world, we carried away from that day a sacred sense of having spent some perfect, restful, dreamlike time together.  We sighed deeply in contentment and emotional refreshment, and still share a memory of that unforgettable day when life seemed to stand timeless and still for a few precious peaceful hours.  That was for us, an ideal, perfect day.

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!

Lupus and a letter to my younger self

Lupus at sweet 16, but not diagnosed

Lupus at sweet sixteen, but not yet diagnosed.  You don’t know this yet, but in a few years you will be a young wife and mother, and will finally be diagnosed with lupus.  However, you will continue to have mysterious symptoms for another ten years before a doctor finally asks the right questions, and runs the correct blood tests to find the answer to why you are so sick.

In the meantime, please just keep trusting God on the days you feel bad. It is not in your head, you are not a hypochondriac, and some day you will have an answer and proper treatment. Until then, keep focusing on your blessings and hold onto the joy of the Lord in the midst of your rough times. The signs of lupus have already been present for most of your life, but the family doctor you have seen since you were five doesn’t know what to look for.  He has repeatedly tested you for rheumatoid arthritis and diabetes, knowing that your mom’s mother had both, in his attempts to try to find an answer to explain why you have had so many health problems.

Even when you had kidney problems and protein in your urine, he never figured out your recurring childhood “kidney infections” were really lupus. Someday you will understand and need to forgive him for what he doesn’t know.

5 year old feet

Remember when you were five, and your knees and joints became swollen and stiff for weeks, and they tested you over and over for rheumatoid arthritis?  It hurt so much to get up and down out of a chair that you cried, and cried?  They were trying to find lupus, but didn’t know what to do to find it. Not very long after that, you went through months of falling asleep in exhaustion in the middle of the afternoon, and the doctor put you on the diabetes diet, thinking it was blood sugar problems, even though you tested negative for diabetes.  They just didn’t yet suspect lupus!

Then, there was that summer when you were a couple of years older, you started getting round puffy red rashes the size of pennies on your face, arms and neck.  This was a sign of your lupus, too,  but the doctor only could describe it as a sun allergy.  He didn’t know to look for lupus.  Later on, you got more round red rashes on your forearms, and your mother thought they were ringworm.  Then you had deep red swollen patches of rash a couple of years after that all over your neck.  Still, probably more cutaneous lupus discoid rashes.

Later, remember another time when you were unusually exhausted for months, and your mom explained to you that the doctor had done blood tests that revealed you were extremely anemic?  Then, you took sustained release iron tablets for several years before your hemoglobin levels stabilized.  This might have been caused by lupus attacking your blood cells, but we will never know, because they didn’t test for lupus.

Summer after grade school

Later, in the summer after grade school, there were high fevers that made you hallucinate.  The doctors at the hospital never suspected lupus, even after searching in vain for a virus or bacteria they thought was causing the fevers.  Still, no lupus diagnosis.  Afterward, you felt bone-tired fatigue for weeks, and in your school pictures from 7th grade you had deep dark circles under your normally sparkling eyes.  Remember how you hid those awful pictures, because they made you feel like you looked like an old sick woman?

Then, a couple of years ago in middle school, they had another opportunity to find your lupus, but missed that, too.  Your sudden severe case of painful pleurisy in your lungs in the eighth grade should have been a clue for your doctor to suspect lupus.

All the migraines you have had since you were a little girl, and the painful mouth and nose ulcers you have had every few weeks from the time you were five or younger were signs and symptoms of lupus. I hate to tell you that you will have to continue having those oral and nasal ulcers for the rest of your life, every time your lupus gets ready to flare. They will become your early warning sign of another major flare ahead.

In a few years, a doctor will even try testing your recurring nose ulcers for cancer, but will again overlook having the biopsy tested for lupus.  I am so sorry to tell you that it will take a few more years and a couple more doctors before one finally figures out that the ulcers are a sign and symptom of your lupus that will eventually be diagnosed correctly.  It is going to take about ten more years.

Senior year of high school

In a couple of years, during your senior year of high school, you will be very sick from October until March. Your legs will ache, your vocal chords will tighten up and you will have fevers and lung infections. You will miss most of your school classes that fall and winter, and have a six-month long bout with what you doctor will dub a “pneumonic viral syndrome.”  During those months you take scores of antibiotics and other drugs, but continue to get sicker and sicker.  You will have no memory of Thanksgiving or Christmas from that year, and the rest of the time will be a foggy blur in your memory.  During those months you will first experience symptoms of peripheral neuropathy pain and nerve irritation in your legs, and you will lose your voice to laryngitis for several months.  The inability to sing will sadden your young heart and be one of your few lingering memories from that long season of illness.

During your second year of college you will experience a long lupus flare that attacks your central nervous system, and have difficulty for the first time remembering what you study. Midway through the school year, you will experience days of intense confusion and sometimes get lost on campus looking for your classes, and even forget your best friends’ names.  Your forgetfulness will have some rough impacts on several friendships, and neither you nor your friends or family will understand why. This will be a lonely scary time, but when you call out to God to be your anchor, He will remain faithful and give you courage and strength to tough it out.

Don’t be afraid of the uncertain years ahead, for in due time you will be one of the lucky ones.  In your fourth year of college you will meet and marry a wonderful man who suffers from asthma and epilepsy, and because he faces his own health challenges, compassionately understands you are facing an as yet unidentified health foe.  You will both share a deep love of God and music, and two solo singers will blend their lives into an amazing duet.  Before you marry, you talk about understanding when each other have the “gray days” when you feel off par, and know you will be able to encourage each other through them.

Young mother in car accident

Shortly after your two children are born, an answer will soon be in sight.  You will have some spinal injuries in a major car accident when you fly into the windshield, head first, and then go through three years of physical therapy.  In the aftermath of that injury, you body will have a hard time recovering.  Arthritis, tendon and muscle inflammation will become out of control, and eventually, you will have intense pain and immobility.  Some days, your knees will be too painful and weak to climb the stairs to your apartment, and your husband will carry you up the stairs.

Difficult to shop

Then, for days at a time, your hands, legs and feet will have so much swelling and intense pain that you end up sobbing by the end of shopping for groceries.  As the pain gets worse, you are eventually walking like an old woman, hobbling in stiffness and pain with every step.  You and your doctor will not at first understand why all this is happening, along with recurring bouts of round skin rashes, more pleurisy, sinus infections and other cycling issues that will come along the way.  Finally, your doctor will look at you one day and say, “you are too young for this,” and you will in wholehearted agreement exclaim, “I AM too young for this!”  In a moment of insight and inspiration, your doctor orders some blood tests that you have never had done before.

A doctor will finally understand it is lupus

A few days later, in excitement and near glee he will call you in to his office to talk!  You will hear the words, “if I am right, you will be doing hand springs in a few months.”  He won’t tell you what he found, but will send you to a rheumatologist he highly respects.  There will be many, many more tests and eventually you will begin receiving medications to treat you for lupus.

From that point on, your life will not be all smooth sailing, but you will always after that know that you are battling lupus.  Your doctors will make many choices along the way that maximize your health and keep you functioning.  You will be able to avoid disability and work a long successful career in law and government, and have a wonderful and fulfilling life.  You will live to see many decades of marriage, grandchildren and much more beyond.

A part of your journey but not in control!

Lupus will cause you many challenges in the years ahead of you, but it will not defeat you.  Your life will be at times a lupus adventure.  You will become strong and will be a victor, and lupus will just be a part of your life’s journey, unwelcome, but not in control.  Your faith and joy will not fail, you will rejoice in the blessings of life.

Lupus and an interesting new UV detecting jewelry product line

Kudos to developers of new UV sun detection product

A visitor to my blog provided information today about a very interesting UV related new product website.  While usually extremely sparing on endorsement of specific products, this new product fascinated me in light of lupus sun sensitivity.  The Sunny Beadz jewelry product line was started in 2011 and was recently featured in gift baskets provided at the Grammy Awards in LA.

Beads in these necklaces change colors in the sun and presence of UV light, becoming increasingly vivid colors as the UV intensity increases.  Kudos for the creative application of technology and sun protection ideas by the Sunny Sleevez company, that also produces arm protection UV blocking “sleeves”!

Check out their website, and the link below for more information about their purple butterfly UV color change necklace and other UV detecting and protection products.

sunnybeadz.com

Lupus patients and UV light in today’s winter solstice

UV light least during winter solstice

Today is the official day on my calendar marking the winter solstice for the earth’s northern hemisphere.  Today is the single day in the year when the entire earth and its north pole are the farthest away from the sun in its orbit.  For sun intolerant lupus patients, today is technically the single day all year with the least danger for UV sun exposure.  So, today a lupus patient could safely linger a few moments longer outside in the sun.

This morning, I did just that!  Standing outside in the cool morning air, I lingered just a bit longer, sipping my hot coffee with the sun’s warmth bathing my shoulders and back.  Watching my amusing dog play on the grass just a few minutes longer than normal, I was smiling and thoroughly enjoying his cheerful exuberance.  Today, I enjoyed a few more rare moments of sun-drenched simple joy.

Safest day for UV Exposure

The winter solstice usually falls between December 21 to 23 in the Northern Hemisphere, and June 20 to 23 in the Southern Hemisphere.  Today’s cooler winter weather is caused by a combination of changing physical conditions coinciding during the winter solstice, but is primarily due to sunlight striking the earth’s surface from the lowest angle in the sky.  Today, the earth travels in its oblong orbit at its farthest distance from the sun.  Today is this year’s shortest day, and tonight will be its longest night.

Earth's Orbit

Today the North Pole will be completely dark all day and night as it falls completely into the shadowed half of the earth facing away from the sun.  Six months from now, a noon sunbeam will strike from high in the sky, but not today.   Today, because the earth’s north pole tilts away from the sun, the same sunbeam travels farther through the earth’s atmosphere and enters it from a lower point in the sky.  Also, today’s same sunbeam covers a larger area of the ground, warming a larger space less efficiently while spreading its total energy more thinly.   Today all the winter cooling factors have their greatest effect.

What does all this mean for a lupus patient or any person with sun sensitivity?  Today is probably the safest day all year for lupus patients to be exposed to the sun’s light, including its UV rays.  But still, we need to wear our sunscreen and remember to be careful out there!

Lupus and Having a Yard Sale – Proceed at Your Own Risk!

Let's have a yard sale!

Let’s have a yard sale!  What a wonderful thought, especially for the forgetful lupus patient, who has conveniently put out of her failing short-term memory any recollection of the true magnitude of a full-blown garage sale experience!  Yet, that is exactly what I did.

My daughter, mother-in-law and sister-in-law all joined me in a two-day yard sale at my house this weekend.

Let’s see, what are some of the things I forgot since the last one?

• How many weeks it takes to get ready
• How many signs there are to put out (and pick back up)
• How much work it is!
• How much change is needed to start out
• How early the ad has to be submitted to get out on time
• How much the ad in the paper costs
• How early the first early bird customers arrive, usually before sunrise
• How heavy the boxes are
• How much sun is involved, and how hard it is to remember to stay in the shade
• How much water I should be drinking all day
• How important it is to have a good weather report
• How exhausted the experience makes me
• How hard it is to wake up the next morning
• How important it is to wear my hat and long sleeves all day
• How little sun it takes to make my lupus malar rash flare
• How much my arthritis flares after standing outside all day
• How long they seem to last
• How much I enjoy meeting my neighbors!
• How many people show up just after you put all the stuff away
• How much fun it can be with people you love and enjoy hanging out with
• How much I spent originally for everything I sold at 10 cents on the dollar
• How much stuff is left when all the customers have gone home
• How many coins there are to roll before they can be deposited
• How old I feel at the end of the day
• How dirty and grimy I feel afterwards

How much I say I never want to do ANOTHER yard sale!

Lupus at the Labor Day Picnic

Wonderful balmy afternoon breeze

Labor Day means picnics, grilling in the park, volleyball, softball, children laughing and fun with family.  However, with Lupus, a day in the park,  basking in the last of the summer’s heat, takes on new challenges.  So, the family set up a shade canopy in the double-shading of the biggest trees, surrounded by a ring of lawn chairs and picnic coolers.

So taking “center stage,” there were countless pleasant conversations enjoyed with those who stopped by to share the picnic blanket.  Slathered in sun screen, and dressed to block the extra UV rays, I was well-positioned for a long restful sun-safe day in the park.  A sister, brother, daughter-in-law, niece, cousins and kin of every other label were delightful visitors to my cool grassy oasis.

Perfect last day of vacation!

I had a wonderful opportunity to share my shady shelter with a couple of extremely little folks, primarily the diaper and toddler crowd!  I expanded some very important relationships with the wee folks in my life.  They certainly know how to enjoy a relaxing balmy afternoon.

Taking notes, I watched as my little granddaughter lifted her face to feel the gentle cool breeze on her cheeks, smiling and giggling as the gentle tickling flow of air made her wispy hair dance.  Learning a little better how to unwind and enjoy the moment, I joyed in my granddaughter and her companions keeping company with me as adept mentors and relaxation coaches.

I am thanking God for this pleasant, love-filled and perfect last day of our vacation!

Lupus and failing my solar math quiz

How much sun is too much for lupus?

How much sun is too much for a lupus patient?  I have heard that 15 minutes per day is pretty much the maximum daily sun any wise lupus patient should absorb.  However, what about little snippets of sunshine, spread out throughout a single day?  Do they count?  I recently learned the hard way how important it is to do the math and add up the day’s total sun exposure.

About 10 days ago, we conducted interviews for a vacant position in the local government law office where I am the legal administrator.  Our legal department has two divisions, one in the main building and a second in the court building.  It was my (self-assigned) role on interview day to walk the final eight candidates to the second office, while conducting a guided tour of the campus.

Dressed, but no hat!

When I dressed that morning, I knew I would be walking outside more than normal, so I wore slacks and a long-sleeved shirt.  However, that was not enough planning.  I didn’t give the sun much more thought, preoccupied with the details of the day’s schedule and coordinating two panels and various tours of our offices.  I failed to consider my need for a hat, and to prepare for repeated applications of sun screen.

This was a major misstep toward failing the upcoming solar math quiz I would face on interview day.

Between both offices is a beautiful desert-landscaped campus.  I picked up each guest at our main office.  After exiting down several stairs outside the building, we crossed the campus on lovely tree-lined walkways, and passed a through a delightful botanical garden.   Crossing this plaza usually takes about 5 minutes,  However, strolling and chatting with a guest took a few minutes longer.  Sometimes, lingering for a moment in the shade,  intent on discussion of a specific thought or topic before continuing on our way.

Walking between the buildings

This was a perfect setting for conducting a casual walking interview.  Our conversations covered interesting high points in the history of the organization and our office, and discussed the workflow and computer issues related to our completely paperless prosecution practice.   By the time the day was over I had thoroughly enjoyed my conversations with 8 uniquely different and highly qualified attorneys.  At the end of the day, I was well-prepared to discuss each candidate with the managing attorneys.

But, I had abysmally failed my solar math quiz!

By the end of the day I had accumulated a total of 2 full hours in the sun.  It didn’t seem like that much, until I did the math.

Each interview caused me to get approximately 15 minutes of sun, half on the way to the court, and half returning to our main office.  After eight interviews, I had accumulated at least 120 minutes in the sun.  I was on my feet all day, as well, and gave my tired aching bones a much longer-than-normal workout.

At the end of the day, I was beginning to realize my folly.  I was thoroughly exhausted, and my feet hurt.  By the next morning, I had no question that I had failed to calculate the potential impact of my misguided actions.

Failing my solar math test!

Morning greeted me with a full-blown flare of my lupus.  My joints were painful and swollen, my arthritis flared, and the long bones inside my arms and legs ached deeply.  New mouth and nose ulcers had erupted overnight, and my pervasive malaise and profound brain fog were debilitating.  My over exertion and over exposure had triggered a whopping lupus flare and overwhelming fatigue.

I had no one to blame but myself, since I had set up the interview schedules and assignments.  My own poor preparation for the solar quiz, resulted in my grade of  “F” for failing, fatigue and flare!  What was I thinking?

In response to the self-induced lupus flare, in the days that followed I had to shorten my work hours.  Several of the following mornings I stayed home due to the flare and increased severity of my morning lupus symptoms.  The next time, I hope I remember my recent flare and folly, and remember to assign someone else to cover outside duty.