One Patient's Positive Perspectives

Posts tagged ‘sunscreen’

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 and my theme song – 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 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.

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 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, fishing poles, and a North Pole ozone hole?

Blackfoot River in western Montana

I have always been fond of nature, but would not describe myself as a nature nut.  When you cannot spend more than 15 minutes in the sun without aggravating lupus, its kind of difficult to enjoy the great outdoors, unless you are willing to sit by a lake braving the mosquitoes and gnats to go midnight fishing for catfish.

This evening I had a nice chat with my brother who lives in Montana.  He is pretty down-to-earth and a true lover of nature in the purest sense.  He is an amazing fisherman, and a brilliant, quietly intelligent man.

A few years ago, the two of us went fishing early one cold September Montana dawn on the Blackfoot River (the same river in the movie “A River Runs Through It”.)  That morning we caught several 20 inch trout and whitefish, and took them home for a wonderful breakfast.  We were back home with our bountiful catch long before the morning sun hit the chilly river banks.

My brother really understands nature as very few people do.  He can look under a rock on the shore of lake or river, and tell from the tiny creatures in the mud what kind of fish are swimming down in the depths of water below.

This evening, we started by talking about our aging dad, and then ended up discussing ozone.  I’m not sure how we got there, but with my brother, a wonderful conversation can meander through a countryside of topics and arrive at some of the most interesting destinations!

North Pole ozone hole?

My brother got to telling me about recent news of a hole forming in the arctic ozone layer.  In Montana, the arctic almost counts as local news.  I admitted I knew very little about the ozone layer (and have always shrugged off the fluorocarbon hype.)   Going on into the ozone layer, we chatted some about lightning, O2 (oxygen) and O3 (ozone) molecules and how they are formed and destroyed.

Leave it to my brother to gab with me about ideas as diverse as fishing for trout, and ozone in the atmosphere.  He is not a predictable fellow, and talking with him is an adventure and education every time.

While my brother explained ozone creation and destruction, I Googled “north pole ozone hole.”  I found a wonderful recent article on the National Geographic website precisely discussing our topic of the evening.  I went back to read it later, and enjoyed the beautiful picture heading the story, with a touch of the aurora borealis in the background.  What an interesting read!

A took an interesting tidbit away from the environmental news article to apply to lupus.  I learned that the ozone layer filters out UV light, and that thin ozone filters less and allows more UV to pass through the atmosphere.  The article explains that the effect of thinning ozone is seasonally increased, especially during the spring.

Although the article did not mention lupus specifically, I could clearly see the lupus-application of excellent admonitions about sunburn and skin cancer found in the article:

“The stratosphere’s global blanket of ozone—about 12 miles (20 kilometers) above Earth—blocks most of the sun’s high-frequency ultraviolet (UV) rays from hitting Earth’s surface, largely preventing sunburn and skin cancer.”

“A good message for people [is] to just be aware that this is a year where ozone will be likely thinner this spring.”

“You should watch out for your skin and put on your sunscreen.”

A lupus patients should be aware that UV light can trigger flares due to increased activity of ANA (anti-nuclear antibodies) when the UV passes through the layers of a lupus patient’s skin and strikes ANA in her body’s tissues.

So, I guess if I am going to let the sun warm my shoulders for that extra moment or two, I’d better be careful to put on the sun screen first.

So, let’s be careful out there,  and don’t forget the sunscreen!

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