Category Archives: Lupus Rash

Congratulations, You Have Lupus (#HAWMC 28)

Today’s topic for the Health Writer’s Activist Month Challenge is to write about a “first” in your life: “Write a post about the first time you did something. What is it? What was it like? What did you learn from it?”

I decided to write about my “first” diagnosis of lupus. As a young teen in middle school, I felt “kind-of-bad” two and three days of the week. I would get tired, zone out while doing chores, and frequently had headaches, stomach cramps, muscle pain and the strangest “acne” across my cheeks.

For about two years I went back and forth to different doctors. My pediatrician had me tested for everything from lead poisoning to lyme disease. It wasn’t until I had a seizure in high school (which my mom writes about in A Mother’s Journey), that I saw a rheumatologist who finally diagnosed me with lupus.

con·grat·u·la·tions: an expression of joy in the success or good fortune of another.

That diagnosis was the best news I had in a long time. While I was terrified by having an autoimmune disease, I was relieved that my symptoms had a name. There wasn’t some phantom bad mojo that was stalking me; instead, I had a real, honest-to-goodness medical problem that now could be treated.

That diagnosis was a blessing. I believe to this day that my early diagnosis (and treatment) is what helped me have such a full life over the last twenty plus years.

Katina Rae Stapleton

PS. If you are concerned that you or someone you know may have lupus, check out Diagnosing Lupus, a resource provided by the Lupus Foundation of America. Then contact a medical professional for more information and assistance.

Five Challenges & Five Victories of Lupus (#HAWMC 27)

Today’s Health Activist Writer’s Month Challenge Prompt is:

“Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.”

So, without further ado . . . .

Top 5 Most Difficult Things About Having Lupus for 20+ Years

1.    Lupus is painful
2.    Lupus is exhausting
3.    Lupus is “mysterious” & hard for people to understand
4.    Lupus gave me “Funny”, sensitive skin
5.    Lupus can affect any part of my body at any time

 Top 5 Small Victories That Have Kept Me Going 20+ Years with Lupus

1.    I developed an “Iron Will” to survive and thrive
2.    I do not take feeling good for granted
3.    I discovered that I have wonderful family & friends that love me
4.    Lupus provided inspiration for me to write
5.    Telling my story helps me help others with the disease

Keep strong and carry on,

Katina Rae Stapleton

P.S. In Dinner for Five I wrote that I would have loved to meet Orison Swett Marden, the author of An Iron Will. This is one of my favorite passages:

“Yet in spite of all this, in defiance of it, we know that an iron will is often triumphant in the contest with physical infirmity. Brave spirits are a balsam to themselves: There is a nobleness of mind that heals Wounds beyond salves.”


My Skin Burns: A Third Person Lupus & Fibromyalgia Story (#HAWMC 25)

Katina, founder of Butterflylessons.com has had lupus for over twenty years. When she saw today’s HAWMC prompt to blog in the third person, she knew she wanted to tell a story but couldn’t figure out which one. She finally decided to tell a cautionary tale about having lupus-related skin problems without the trademark butterfly rash:

Katina has gone to the same lupus specialist since she was 14. But for a long time she lived far away from DC and saw a different set of doctors closer to her new home.

One day Katina noticed that her skin was irritated. It looked fine, with not a blemish or rash in sight, but felt kind of “burny” like she was standing a bit too close to a fireplace. It started happening on her face, then the feeling appeared on her arms, until eventually she would have “painful burning flashes” on different parts of her body. Her doctors couldn’t find anything wrong (and they ran tests of all sorts) and had Katina eliminate everything they could think of to stop the burning. She began washing her clothes in sensitive skin detergent (and double rinsed). She switched to sensitive skin soap, drank massive amounts of water, wore only cotton, tried special creams, etc.

But absolutely nothing helped.

Finally, one of Katina’s doctors got frustrated with her and suggested she see a therapist. Katina was very offended and never went to see that doctor again.

Why? Katina’s very own mother was a counselor and Katina thought that counseling was a great idea for people with lupus who are anxious or depressed. But Katina wasn’t anxious or depressed, she was in pain. How was a therapist going to fix Katina’s painful, burning skin?

The Butterfly Lesson in this story is that this doctor thought Katina’s pain was all in her head just because the doctor couldn’t find an obvious cause or solution. That really upset Katina, so she said adios to the doubting-doctor.  But she didn’t give up on the medical profession. Instead, Katina found a great new doctor who specialized in treating the skin. This dermatologist worked with Katina until the burning eventually stopped. It turned out that the dermatologist was not at all surprised that Katina’s skin burned since Katina had lupus (hello!) and fibromyalgia, which apparently also can present as painful burning skin.

“Central sensitization that is associated with fibromyalgia may be the reason this happens according to some experts. It can present differently for people, sometimes being set off by an allergic response, or tight clothing, or banging into something. Suddenly the skin hurts to touch and the most important thing in the world is to get the instrument that caused the pain removed from the scene. Stripping off clothing that causes discomfort and pain is just one of the reactions a FMS person may have.” Skin Problems by Fibromyalgia-symptoms.org

That incident happened about 10 years ago & Katina still sometimes has burny-skin flares.  Through painful trial and error, Katina has discovered that the burning can be triggered by one or more of the following: the summer (sun exposure), chlorinated pools & hot tubs, non-leather shoes, sequins (really) and synthetic hair. But like before, sometimes Katina’s skin will burn for no apparent reason at all. Such is live in lupus/fibromyalgia land.

Love the Skin You are In (Even if it Burns),

Katina Rae Stapleton

P.S. This blog post was written by Katina Rae Stapleton. While Katina has had lupus and fibromyalgia for over 20 years, she is not a medical professional. If you have any questions about lupus or fibromyalgia, including but not limited to diagnosis, treatment, and living with the disease, you should contact a medical professional.

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