Tag Archives: Lupus Foundation of America

Lupus Has Many Voices

As a teen with lupus, I felt very alone, like I was the only person my age with the disease. But teen lupus isn’t actually that uncommon. According to the Lupus Foundation of America:

Lupus develops most often between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve more rapidly into serious health complications.

Yesterday I added my “Voice” to the LFA’s online album of lupus stories. I shared my Butterfly Lessons philosophy and a brief snipped of what my life as a teen with lupus was like. Please check it out at http://bit.ly/JIOAcy and add your own story.

Take care and share your voice,

Katina Rae Stapleton

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

A Six Sentence Story about Sigma Gamma Rho Sorority, Inc. and Lupus Awareness (HAWMC #29)

Today’s Health Activist Writer’s Challenge Month assignment was to write a six-sentence story. I decided to write mine about how my sorority, Sigma Gamma Rho Sorority, Inc., has helped me raise awareness about lupus in the Washington, DC metro area.

Katina (2nd from the left) with sorors from her undergraduate chapter of Sigma Gamma Rho Sorority, Inc. at the DC Walk for Lupus Now!

One day not-so-long ago, Katina Rae Stapleton discovered that her sorority sister from college worked for the Lupus Foundation of America, DC/MD/VA chapter (LFA-DMV). Katina’s soror encouraged her to become involved in the LFA-DMV and later recruited Katina to become the 2011 DC Walk for Lupus Now Co-Chair.  Other members of Katina’s undergraduate and graduate chapters of Sigma Gamma Rho Sorority Inc.  supported her by walking in DC and Baltimore to increase awareness of lupus. One evening last year, Katina went to a social networking meet-up hosted by the Black Public Relations Society of Washington, DC.  At the event, Katina met her soror Ananda Leeke and later wrote a guest-blog on lupus & social networking for Ananda during Digital Sisterhood Month. At the meet-up, Katina also met her soror Kamaria T. Richmond, who later invited her to talk about lupus on the upcoming May 6, 2012 Stroke Diva Fabulous Show (7:25 pm EST).

Hope you enjoyed my very short story.

Take care,

Katina Rae Stapleton

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

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

Black Men also get Lupus: A Pinterest Board (#HAWMC 16)

Today’s HAWMC challenge was to create a Pinterest Board:

Pin it – Health Activist Style. A picture is worth a thousand words and today’s prompt proves it…. What images did you “pin” that mean the most to you when you think about your health, your condition, or your time as a Health Activist?

Nick Cannon has been on my mind a lot lately because he is a great example of “exceptions proving the rule.” Lupus is largely a female disease. According to the Lupus Foundation of America, only one out of every 10 lupus patients is male.

Nick’s case of Lupus Nephritis (when lupus affects the kidneys) is one of a very few cases in which black male celebrities with lupus have called public attention to men and lupus.

Seal has become the “face” of discoid lupus,a version of lupus that severely scars the skin.

Rapper Trick Daddy also has Lupus. Listen to his interview with Wendy Williams here:

If you are interested in viewing my Pinterest Board Black Men with Lupus, please check it out.

Katina Rae Stapleton

Dear 16-year old me (#HAWMC 10)

Today’s HAWMC prompt is:  Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

I’ve had lupus since my early teens, so today’s prompt was very touching to me. I have so many things that I would tell myself, but I think this letter captures the most important.

Katina Rae Stapleton

————————

Dear Kat –

I just wanted you to know that everything will be all right. I know that it is very scary to have lupus. You hurt a lot, it’s hard to concentrate, and having “funny skin” as a teen really sucks. But I am here to tell you that you already have what you need to finish high school, go to college, and even graduate school if you want. You are a smart girl, and most important, you are a fighter. Reach inside and channel that inner strength that will allow to thrive against such a rotten deal of the cards. Your family and friends will be there to help you along the way. Cherish and appreciate them. Despite lupus, you are truly blessed.

Love,

Yourself (just older, wiser, and a bit more fabulous).

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).