Tag Archives: sun

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

Lupus Sucks, Let Me Count the Ways (#HAWMC 23)

Today’s HAWMC topic is writer’s choice and I had planned to write about being happy in spite of being chronically ill. But over lunch I read a wonderful article on ovarian cancer survivor Susan Gubar that inspired me to write about the “dark side” of having lupus instead.

“Motivated by a desire to tackle a writing problem that Virginia Woolf believed the literary women of her generation had failed to solve—telling the truth about the experiences of the female body—I sought to record precisely what I could not or would not speak to most of my family and friends.” Susan Gubar

Like Susan, I often find that I censor what I tell my friends and family about what it is like to live with lupus. I’ve had lupus for decades and have faced a mountain of indignities caused by systemic lupus erythematosus (and her first cousin fibromyalgia). I don’t share for many reasons. The most important one is TMI (To Much Information). Even though I blog about lupus, I am a pretty private person and don’t want everyone who sees me on a day-to-day basis to be preoccupied with my symptoms and wondering “Is she ok?” So most of the time when people ask me how I am, I say I am alright (or fair-to-middling), even if I feel terrible.

So I decided to devote today’s blog to “speaking-truth” about the experience of having lupus:

Anyone who reads the lupus symptom list can tell that it is no picnic, but the list still doesn’t adequately capture the suckiness of the disease.

Disclaimer: Before reading my Lupus Sucks List, please remember that Lupus is very individualized and symptoms (and severity of symptoms) vary across patients. Just because these awful things happened to me as a teen, doesn’t mean they will happen to you if you have lupus. See What are the Symptoms of Lupus for general information and contact a medical professional if you have any questions about your health.

10 Ways Lupus Sucks : The High School Edition

  1. Lupus Can Kill: The first person I ever met with lupus, a middle-school student of my mother’s, died within a week of my lupus diagnosis. 
  2. Lupus Can Affect Any Part Of The Body: Before I was diagnosed with lupus as a teen, I would lose my vision every single morning when I got out of bed. It would come back, but having tunnel vision and then going blind, even for a few seconds, is pretty scary.

    Common Symptoms of Lupus, Wikipedia

  3. Lupus Can Be Exhausting: I would be so tired during the school day that I had a hall pass to go to the health room at any time to take a nap.
  4. Lupus Can Cause Brain Fog: If I did not take a nap during lunch, I often could not remember what we discussed in class—at all—I would have no memory, whatsoever, of my afternoon classes and no notes.
  5. Lupus Can Make It Hard To Have A Social Life: I had great friends who were very supportive. But spending time with them after school was tough because I was always so tired. “I can’t come because I am sick” was my frequent response to my friends’ invitations to hang out. Having to say no all the time was awful (or worse, saying yes, then cancelling, see #10).
  6. Lupus Rashes Can be Worse than Acne:I am still a bit traumatized by having a rash across my face throughout my entire middle and high school career.

    African American Woman with Lupus Butterfly Rash, Wikipedia

  7. Lupus Can Limit Your Outdoor Activities: Being “allergic” to the sun made it hard for me to do sports or even sit outside for long periods of time. It’s a good thing I was a nerd.
  8. Lupus Can Be Super-Painful:  The pain would come and go, but I often had killer headaches, monster stomach cramps, and swollen achy joints. I even had to quit playing the piano because I couldn’t bend my pinky finger (sigh).
  9. Lupus Can Make You Physically Weak: I had to request two sets of books, one to keep at school and one to keep at home because they were too heavy to carry (Ok, that wasn’t all bad. One of my male friends would carry my books to class for me and that was kind of cool). 
  10. Lupus Symptoms Can Strike At Any Time: I could be perfectly fine, get dressed to go out with friends, and then be so exhausted by putting on my clothes that I couldn’t actually go out (see #5 above).

I asked fellow Lupus sufferers on Twitter to tweet me the ways in which lupus sucks in their own lives. Please feel free to join the #lupussucks conversation on Twitter or add comments to this post. I know that lupus sucks in so, so many ways . . . .

So Far From the Twitterverse:  

  • Lupus sucks, because it forces you to change plans more often than you make them.
  • so much pain and tiredness.
  • lots of canker sores for no reason

Take Care and Don’t Let that Sucky Lupus Get You Down,

Katina Rae Stapleton

Avoid the Sun and Listen to Your Mother: A lupus cautionary tale (#HAWMC 17)

Today’s HAWMC prompt is dear to my heart because I have learned many, many Butterfly Lessons the hard way.

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

My favorite hard-headed story is about the sunbathing. Probably anyone who has ever heard of lupus knows that one of the illness’ distinguishing characteristics is sun sensitivity. To sum it up in a catchy phrase:

“The Sun is not my friend.”

I am pretty good at minimizing sun exposure, but must admit that I still love to travel to sunny places. I have gone to the Caribbean several times and even went to Hawaii and Tulum, Mexico (which is crazy hot).

Each trip I managed by keeping out of the sun during the heat of the day, always wearing a hat and sunscreen, and become best friends with beach umbrellas. The trips have gone well though I sometimes get sick towards the end.

For me, sun exposure is kind of like Russian roulette, because I don’t get sick every time (but when I do get sick, it is very, very, bad).  For example:

•    I took a trip to Miami and basically only went from the airport to my hotel.  I was curled up in the bed with stomach pains for 2 days.
•    I went to the Epcot Center and waited in line to get into the park for about 15 minutes. I only made it about 100 hard yards into the park before I was overwhelmed by pain. I had to return to the hotel and stayed in bed for about 2 days. (I am kind of sad that I never actually got to see Epcot and am trying again this summer. Maybe I can get a Drs. note to bypass the line?)
•    I went to Myrtle Beach, South Carolina and walked from the car to a shopping center and had a flare. I was sick the whole rest of the trip.

In all three cases above, my sun exposure was minimal, but the pain was maximal. It hardly seems fair. But one family trip I took in graduate school ended badly when I completely ignored my common-lupus-sense and ignored my mother’s sage advice (recreated below) . . .

Mom: Katina, do you think you should be in the outdoor pool so long in a swimsuit? You know the sun makes you sick.

Katina: Why are you such a kill-joy? Can’t you see I am enjoying myself? Can’t you let a sista hang out with her cousins in peace?

Mom: Ok. It’s your funeral.

On this trip, I didn’t get sick right away. I was lulled into thinking that all my pool-side sunbathing would have no negative consequences. But I was completely wrong. When I went back home, I had a “fatigue” flare and could not get out of bed for an entire week.

Katina: Mom! I’m sooooooo sick. And I live alone. Why, Why, Why do I feel so bad?!?!

Mom: I told you so.

The Butterfly Lesson: Avoid the sun and listen to your mother.

Take care,

Katina Rae Stapleton

Keep Calm and Wear Sunscreen (#HAWMC Day 9)

Today’s HAWMC challenge is:

Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

The Butterfly Lesson:

Take Care and Sunscreen Often,

Katina Rae Stapleton

If was a Marvel superhero, I would be Madame Butterfly Lessons (HAWMC #7)

Earlier this week the HAWMC challenge was to write about your superpower. Mine was resilience. On Twitter, several people suggested going to the Marvel website to create a superhero.

Meet Madame Butterfly Lessons. She can do anything outside because she is completely protected from the sun.

If you were a lupus hero or heroine, how would you protect yourself from the sun’s deadly rays?

Katina Rae Stapleton

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