One Patient's Positive Perspectives

Posts tagged ‘sun exposure’

Lupus Poem: Sunshine My Enemy, Sunshine My Friend

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Sunshine My Enemy

In our sky a yellow orb emits its brilliant light,
its hues combined, a streaming beam so powerful and bright.
Traversing space and vast expanse, illumining earthly day,
in eight minutes’ time arriving here, from a hundred million miles away.

The rays arrive in many types, some harmful and some good,
the earth responds from warmth it makes to yield our needed food.
Our bodies need its help to make Vitamin D we truly need,
produced by sunlight’s UVB, the sun performs a necessary deed.

Sunshine is my friend, its true, and an enemy at times, as well,
those same productive rays of light can cause my joints to swell.
Within my skin an autoimmune reaction to UVA and B,
Burning, wrinkling skin over time, and triggering lupus flares in me.

Sunshine is my enemy, but sunshine is also my friend,
In doses small enough it’s good, if exposure can quickly end.
With sunscreen on, long sleeves and hat, I’m ready for some fun,
Cautiously I head outdoors for brief encounters with the sun!

by Lupus Adventurer
Copyright March 26, 2014

Sunshine is My Friend

Sunshine My Friend

 

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POSTPONED: Walk to End Lupus Now™ Scottsdale, AZ was 5-3-14 >> Rescheduled to 9-27-14

 4/16/14 UPDATE: Arizona Walk to End Lupus Now™ rescheduled to sunset on 9-27-14 and relocated to Scottsdale Center for the Arts

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Getting good news of seemingly quiescent lupus

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Develop a good doctor-patient rapport

Developing a good relationship with our doctors is critical to effective management of lupus.  The second appointment with my new rheumatologist went very well, focused on reviewing the battery of lab tests done a few weeks earlier, and communicating a quick update of current symptoms.  My health has continued to stabilize and improve since a failed steroid withdrawal crisis three months ago.

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quiet lupus biomarkers

We discussed the surprising news that all my lupus biomarkers had become very quiet.  Because of my very long history of lupus activity, this means my lupus is now under good control.  However, we talked about the present but improved recent recurring mouth and nasal ulcers, arthritis, fatigue and mild cognitive challenges I have had since my last visit.  She also explained her interesting supposition — in the absence of my medical history — if I had been a new patient coming to see her with such good blood tests and quiet lupus biomarkers, she would never have suspected I had lupus!

This quieter lupus is a blessing, attributable in part to important medications: an appropriate daily dose of prednisone, continuation of long-term daily plaquenil (for over fifteen years) and two and a half  years of monthly Benlysta infusions.  My lupus is now under better control than can I remember in a long time. It is hard for me to know how much the decision to stop prednisone withdrawal factored into this, but removing the confusion of steroid insufficiency symptoms from the mix had to have helped.   Now that I am getting adequate prednisone, everything else seems so much better, too.

Quieter lupus...

Quieter lupus…

We still don’t know if I will eventually be able to get off prednisone completely.  Although we discussed the possibility of dropping from 7 mg of prednisone to 6 mg, for now we agreed to wait a little longer to try that.  Frankly, I am a little “gun-shy” to give it a try yet and am being very honest with my doctor about this.  However, I am determined to be a compliant patient, and will coöperate with my doctor if she decided I should try prednisone withdrawal again.  But, I’ll just need to have assurance beforehand that my doctor is accessible and will check any problems as they arise.

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Hiding from the sun…

My doctor explained that she doesn’t usually recommend lupus patients attempt getting off of steroids in the winter, when they tend to have more flares following increased summer sun exposure.  She asked if I get rashes after being out in the sun, and my answer was, “no, because I no longer go out in the sun for more than a minute or two,” adding, “if I would, then I would!

This exchange made me think about how many of us have made radical changes to our lives to accommodate our lupus, in our attempts to keep the upper hand.  There was a point in my life when I would have been horrified by the idea of an illness that prevented enjoying the great outdoors on a sunny day.  Now, I never spend any time in the sun, not at all.  So, now I guess I just take this loss in my stride, while even perhaps being a little thankful that at least I know I must avoid the sun to stay well.

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Triple stress: a perfect storm

My doctor asked a question about recent major stresses in personal or professional life, and we discussed a trio of extremely stressful work situations in my government law office management responsibilities.  While I cannot talk about the confidential issues themselves, I could explain the type of uniquely and intensely stressful situations I’ve handled over the past couple of months.  Describing how these overlapped in their impacts on me mentally, physically and even spiritually, they have truly been what she aptly described as “the perfect storm.”

It has amazed me that I’ve been able to manage these three intensely stressful professional situations, while also working long hours while compelled to search for uncommon wisdom and insight to resolve them. Although there have been a few moments when I thought I would, at no time did I buckle under the weight of these challenging responsibilities.

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He gives more grace
when burdens grow greater

For this, I am grateful, and thank God for hearing my prayers and allowing me to graciously borrow a drop or two of His wisdom in the midst of the churning cauldron of stress.

A couple of take away thoughts at this point in my lupus adventure?   My biomarkers may be quiet, but the ongoing presence of mouth ulcers, arthritis, neuropathy, fatigue and CNS issues still continue to tell me my lupus is there.  It may be quietly lurking in the background for now, but it is still there.  My challenge now is to keep lupus suppressed and less prominent and less disruptive than it was in the not-too-distant past.  This is truly a part of the great and often unpredictable path of our lupus adventure.

Lupus Adventurer and little digital butterfly collecting

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Albuquerque Bio Park
Butterfly Sanctuary

During a recent trip to Albuquerque, a trip to the Aquarium and Bio Park included spending time in the butterfly sanctuary on the grounds.

To prevent too much sun exposure that might flare my lupus, precautions such as a wide-brimmed hat, long sleeve sweater and pants were donned at the outset.  Getting through the park without over-exposure was very doable, even in the middle of the day, as we found abundant shade from the well established tree cover in the park.  Also, there was plenty of dappled shade throughout the butterfly sanctuary.

The outing was a thoroughly wonderful afternoon, and provided a first-hand opportunity for catching some butterflies to share with you.

All the photos below were recently added to the full gallery on the Butterfly Collecting Adventures page, with the newest “specimens” shown below for your enjoyment.

Some of the photos are mine, some are my daughter-in-law’s.  If you look closely, you might even find a couple of pictures of my grandchildren enjoying the day and in “close encounter” with a butterfly.

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

LFA 2013 Walk Registration

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.

LFA 2013 Walk Kris from LFA

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

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.

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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.

LFA 2013 Walk Anne

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.

LFA 2013 Walk Elizabeth

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.

LFA 2013 Walk Finshers

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.

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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.

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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.

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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.

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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…

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LFA 2013 Walk Taylor

LFA 2013 Walk Walkers

LFA 2013 Walk David from AZ LFA

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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.

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