Tag Archives: Alaska

Embracing the Lupus Butterfly . . .rash and all (#HAWMC 24)

“Your skin is the fingerprint of what is going on inside your body” Georgianna Donadio

Today’s Health Activist Writers Month Challenge topic is:

“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”

This is the easiest post of the month for me because Lupus (aka Systemic Lupus Erythematosus & SLE), a chronic autoimmune disease, has long been associated with butterflies.

Why? One of the “tell-tale” symptoms of lupus is a “butterfly rash” that appears across your nose and cheeks.

According to the Lupus Foundation of America:

Acute cutaneous lupus lesions occur when your systemic lupus is active. The most typical form of acute cutaneous lupus is a malar rash — flattened areas of red skin on your face that resemble a sunburn. When the rash appears on both cheeks and across the bridge of the nose in the shape of a butterfly, it is known as the “butterfly rash.” However, the rash can also appear on your arms, legs, and body. These lesions tend to be very photosensitive. They typically do not produce scarring, although changes in skin color may occur.”

Butterfly rashes can vary in appearance and severity and can affect lupus patients across nationalities, race, gender, and age.

Courtesy: Edward Zabawski, Originally posted in "Scientists closing in on true identity of the 'great imitator' " http://bit.ly/IDCe3l

Originally Posted in "Lupus Diagnosis Can Be an Exercise in Suspicion" - http://bit.ly/ICw4k3

Photo from Medline Plus - "Lupus, discoid on the face" http://1.usa.gov/Jx108o

Seal is perhaps the most famous person with a butterfly rash. He has cutaneous (discoid) lupus, a form of lupus that is limited to the skin - http://bit.ly/9iCql3.

Over the years the lupus community has turned the butterfly rash into a powerful symbol. In nature, butterflies represent change. They start out as worms that metamorphose into beautiful creatures.

“The butterfly is the symbol of change, joy and color. It is the symbol of the soul. . . They teach us that growth and transformation does not have to traumatic; it can occur gently, sweetly, joyfully.” Lins Domain

When I was looking for an image to represent the Butterfly Lessons Blog, I knew it had to be a butterfly-woman, since Lupus is predominately a woman’s disease. I had just come back from Alaska and was inspired by the Native Alaskan Butterfly Art I saw there.

Some of my favorite pieces were by Sue Coccia:

Sue Coccia's Butterfly Pin. Copyright Sue Coccia. http://www.earthartinternational.com/Butterflypin.html

I even colored a Coccia-inspired Eagle-Butterfly totem of my own.

So when I contacted Karen Presley of Anointed Press Graphics to design a Butterfly Lessons logo for me, I told her that it had to have an “Alaskan spirit” and capture the strength and beauty of lupus butterflies. Here is the result:

In the meantime, I also purchased this lovely Butterfly Woman graphic from Istockphoto because it was so joyful (and it closely resembles a picture I had on my personal vision board). I use this photo on Butterflylessons.com and as my Twitter icon.

Embrace each day by living your dreams!

If you have a favorite butterfly picture that represents your lupus journey, include a link in the comments below or tweet me at @ButterflyLesson.

Take care. And to all my fellow lupus butterflies, don’t let a rash get you down . . .

Katina Rae Stapleton

Update: Check out this great Butterfly Picture from @PilarUrzainqui.

Butterfly Pilar Urzainqui - @PilarUrzainqui on Twitter

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Have Lupus, Will Travel (HAWMC #5)

Today’s HAWMC prompt was: “Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When I explored Flickr, I spotted this lovely (copyrighted) picture by Rob Dickenson of Hawea. It reminded me very much of my own travels around the world. When I first was diagnosed with lupus as a teen, I was terribly afraid that I wouldn’t be able to travel or that I would travel, but get sick on the road. Over the years I have had a chance to travel several times to the Caribbean, to Europe and across the United States (even Hawaii and Alaska). I came up with several rules that help make traveling easier for me:

  1. I make sure I have all my medicine, including meds I take regularly and “emergency” meds that I might need if I have a flare.
  2. I plan for proper rest. On my last cruise I went to be around 9 pm every night (crazy early!) because that is what I needed.
  3. I pack things that I can use to battle muscle and joint pain. I always, always, have some sort of heating pad in my luggage.
  4. I always respect the sun. Even though I frequently go to very sunny places, I try not to tempt fate too much. I pack my trusty hat collection, sunscreen and shades and try not to linger in the sun during the heat of the day.
  5. I make sure I have at least one day after the trip to rest before returning to work. This allows me to unwind from the trip (flying sometimes makes me sick) and gear up for the 9-to-5.

If you have lupus and love to travel, what do you do to make your trips go smoothly?

Katina Rae Stapleton