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I’m Raising Lupus Awareness on the Stroke Diva Fabulous Show (Sun. May 6, 2012, 7:30 PM EDT)

This Sunday, I am partnering with my Sorority sister & LifeStyle Blogger Kamaria T. Richmond to bring you twice the fabulousness and some great information about living with lupus.

Kamaria hosts The Stroke Diva Fabulous Show, a monthly radio show on Talkshoe Radio. Kamaria was inspired to create The Stroke Diva Fabulous Show after her 2004 stroke. The show is a celebration of life and topics include spirituality, healthy living, lifestyle reinvention, the arts, music, current issues, popular culture, fashion, beauty, travel, gourmet food, wine, home decor, and so much more.

This Month’s topic on the Stroke Diva Fabulous Show is Lupus in honor of Lupus Awareness Month and features me (Katina Rae Stapleton) the brains and beauty behind the Butterfly Lessons: Living a Fabulous Life with Lupus Blog.

WhatLupus Awareness w/ Katina Rae Stapleton on the Stroke Diva Fabulous Show!

Where: Online at Talk Shoe Radio

When: Sunday, May 6, 2012 at 7:30 PM Eastern Daylight Time

We would love if you joined us as I dish with Kamaria about the ups and downs of living with lupus and the nature of fabulousness:

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? . . . as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” Marianne Williamson

Until Sunday,

Katina Rae Stapleton

Want more Kamaria? She shares her lifestyle insights and experiences on her Cinchcast audio blog: http://www.cinchcast.com/kamaria. Follow Kamaria on Twitter: http://twitter.com/kamaria and connect with her on Facebook.


30 Posts in 30 Days: Looking Back on the Health Activist Writer’s Month Challenge

The final prompt for the Health Activist Writer’s Month Challenge asks us to recap our experiences blogging about our health focus for the past 30 days. I had an absolute blast. Check out the photo-essay below on my experiences blogging about lupus for #HAWMC 2012.

I finished! I wrote 30 posts in 30 days, though one was a tad late.

#HAWMC increased readership of Butterfly Lessons: Living a Fabulous Life with Lupus. In February and March, the blog received about 600 visits each month, but in April, Butterflylessons.com received app. 1,500 visits.

I was going to skip writing the #HAWMC post on the 19th, but changed my mind around 11:30 pm. By the time I posted the blog, it was already the 20th. That is why the 19th looks so sad on this calendar of my posts.

Most readers of ButterflyLessons.com are located in the United States.

According to Klout, Butterfly Lessons is a Socializer! During #HAWMC, I enjoyed "meeting" other health activists on Twitter and sharing my story with @Butterflylesson & @KRSProf followers.

I received great feedback from readers.

I received blogger love from other members of the #HAWMC family. This passage is from Rhiann, the blogger behind "My Brain Lesion and Me" - http://brainlesionandme.wordpress.com/. Reading her great #HAWMC posts reminded me that even though invisible illnesses differ, we all face many similar challenges.

The 2012 #HAWMC challenge may be over, but my lupus awareness journey continues. During May 2012, I will celebrate Lupus Awareness Month by continuing to blog and tweet about how to live a fabulous life with lupus.

Take care and stay fabulous,

Katina Rae Stapleton

Living a Fabulous Life with Lupus (#HAWMC 26)

“No matter what the disease has thrown my way, I have never lost sight of my dream to have a fabulous life.” Katina Rae Stapleton

This week, I am coming into the homestretch of the Health Activists Writer’s Month Challenge. I am excited that I was able to blog every day (with the exception of a post that went live after midnight). Today’s HAWMC topic is close to my heart:

“Today you are challenged with the task of writing a tagline. This can be for your blog, your health condition or for yourself.”

Since I already have a tagline for the Butterfly Lessons blog, this assignment was super easy . . .

Living a Fabulous Life with Lupus

I picked “fabulousness” as the theme of my blog, because I hate low expectations. I refuse to believe that a lupus diagnosis must lead to a sad, dreary, lonely, painful life. I have a full life and know many fellow lupus butterflies who are overcoming obstacles to pursue their hopes and dreams. Many of them I have “met” online:

There is Christine Miserandino, who came up the idea of using spoons to describe living with lupus. Her website But You Don’t Look Sick is an oasis for spoonies who live with chronic illnesses and invisible disabilities. You can find her on Twitter as @bydls.

I am also inspired by these super fabulous “tweeps” and fellow lupus bloggers:

Before you leave Butterfly Lessons today, check out the Blogroll for links to other lupus bloggers and organizations who are trying to make life better for those of us living with lupus (one day at a time).

Take care & be fabulous,

Katina Rae Stapleton

P.S. To learn more about how the blog Butterfly Lessons: Living a Fabulous Life with Lupus came about, read “About Katina Rae Stapleton.”

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

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