Category Archives: Lupus Butterflies

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

10 things I would hate to live without (#HAWMC 13)

Today’s #HAWMC prompt was to write a list of the 10 things you need (or love) most.

I found this great quote online about the things living beings need to exist:

All living things need an energy source which may be provided by chemicals or light, an environment that does not poison, cook or freeze them and others of their species (if they are not single celled or asexual) to breed with. Unknown

Since I have food & water and a home with air-conditioning and heat, I think I am set for life (yes, I know mom, I am not married yet!). So I thought my list should be of 10 things I would hate to live without:

  • Faith
  • Family
  • Friends
  • Books
  • Deep Tissue Massage
  • Mani-Pedis
  • An occasional day off from work
  • Sunrises and Sunsets
  • Travel
  • Chocolate

I hope this weekend you have a chance to enjoy the things you love,

Katina Rae Stapleton

Making Lupus Divalicious with Ebonique Jones

Over the past year, I have enjoyed meeting people across the DC/MD/VA area as I have talked about Lupus awareness. It has struck me how many people’s lives have been by touched by the disease. At one public speaking event, I had the good fortune to meet Ebonique Jones, owner of Divalicious Sweet Treats, a DC custom cake company. Ebonique’s father suffered from Lupus before he passed away in 1997. In his honor, Ebonique approached me about using Divalicious Sweet Treats to help raise awareness for the disease. One thing led to another and Ebonique became a cupcake sponsor of the 2011 DC Walk for Lupus Now and walked alongside Team Butterfly Lessons.

I asked Ebonique why she felt it was so important for her to walk and help raise awareness of Lupus. She said:

 “I know first hand how this disease not only cripples the patient’s ability to move and get around, but also the family members who try to do everything to their ability to do what’s necessary to care for their family member. When my dad was diagnosed I truly didn’t understand the disease, but I do remember some days he couldn’t get out of the bed. It was heart breaking to see him that way, but my mom did her best to make sure he didn’t want or need for anything. I think it’s important that families get the help and support they need to battle this disease. So I wanted to do my part and give back to the community and help raise awareness for this cause.”

Ebonique Jones (right) shows her Divalicious Butterfly Spirit at the 2011 DC Walk for Lupus Now!

I feel blessed that I was able to meet Ebonique and that she has been able to lend her unique talents to the Lupus Community.

Take care,

Katina Rae Stapleton

P.S. If you live in the DC/MD/VA area and would like some Divalicious cupcakes, check out Ebonique’s website (http://sweetdivatreats.com). 

Butterflies sure know how to party!

I had a great time tonight at the Lupus Foundation of America, DC/MD/VA chapter’s annual Butterfly Party! Volunteers bonded together over pizza, soda, and ice cream, while we helped the chapter prepare for this Saturday’s 2011 DC Walk for Lupus Now! Who knew that all of those paper butterflies didn’t come pre-assembled . .  . . .

If you are interested in walking with Team Butterfly Lessons, there is still time to sign up to walk with us this Saturday! As on 10:00 pm today (April 12, 2011), Team Butterfly Lessons has 11 walkers who have raised just over $1800.  Additional donations are always welcome.

Thanks to everyone for your support. Without you this walk would not be possible.

Take care,

Katina Rae Stapleton

 

 

Living your life like it’s GOLDEN!

One of the great things about the internet is that it allows people with lupus to locate others who share the disease and learn from them. One of my favorite inspiration-blogs is written by Juliana Joie, a lupus and fibromyalgia survivor that embraces life to the fullest and is actively working to share her blessings with others.

This afternoon I checked my email and spotted Juliana’s monthly newsletter.  She included a powerful message about making the rest of 2010 fabulous:

“It is a wonderful time to seek clarity inside yourself and choose which goals are the juiciest, richest, and most powerful for you! Remember that saying “No” to some things can mean a great big “YES” to other things!

  • As you reflect on 2010, what accomplishments do you want to savor?
  • What will fulfill your heart’s deepest longing?
  • How will you create the life you love with these precious 12 weeks?”

It was a very timely message for me because I just decided that my end of the year goals are to relax and have a good time. I’ve even adopted a theme song. For the next three months I’m going to live my life like it’s Golden . . .

I’m taking my own freedom
Putting it in my song,
Singing loud and strong,
Grooving all day long,
I’m taking my freedom,
Putting it in my stroll,
I’ll be high-steppin’ y’all,
Letting the joy unfold.

Golden, by Jill Scott

The Butterfly Lesson: Life is too precious to waste. But it is a mistake to believe that you must always be doing something “serious” with your time. Sometimes inaction (rest, relaxation, a deep tissue massage!) is what you need.  Other times you should slip on a pair of your favorite shoes and dance, curl up with the television, read a good book, spend time with your friends and family, or anything else that brings you joy.