Category Archives: Fabulous

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

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.

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.”

Dinner for Five (#HAWMC 19)

Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.
Orison Swett Marden

Thursday’s HAWMC prompt was:

Who are 5 people you’d love to have dinner with (living or deceased) and why?

My five are:

  • Rosalind Joffe, author of Women, Work, and Autoimmune Disease for inspiring women with chronic illnesses to stay in the workforce.
  • Dolly Parton, my favorite country singer of all time and icon of fabulousness.
  • Orison Swett Marden, motivational writer and founder of Success magazine for his sage advice on perseverance in the face of struggle.
  • Laura Hillenbrand, chronic fatigue syndrome survivor who managed to write the international bestseller Seabiscuit despite being homebound.
  • Salt-N-Pepa (who I am counting as 1), my favorite female rappers for inspiring me to tell my story.

Who would you invite to dinner and why?

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).

A Lupus Haiku for you (#HAWMC 6)

Today’s prompt was a doozy: Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like.

I must confess that I almost used my get-out-of-post-free option today. But in a moment of inspiration I came up with this Haiku that summarizes my experience with systemic lupus erythematosus (SLE or lupus for short).

Inside I hurt bad
Outside I am fabulous
I have SLE

Want more Haiku about lupus? Check out Lupus Haiku and Lupus Haiku & Why I Write.

Katina Rae Stapleton

Top 5 Reasons I Write About Lupus (Day 4 of #HAWMC)

Today’s prompt was: “I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping.”

So without further ado, here are the Top 5 Reasons I Write About Lupus

#5     Even though House is always mentioning lupus, it is a disease that not enough people know about.

#4     I have always loved to write and find it very rewarding to write about a subject I know a lot about.

#3     Telling my story lets me give others a glimpse into what life is like for someone who has an invisible chronic illness.

#2     Writing about lupus allows me to be part of a wonderful community of health activists, lupus warriors, and spoonies online.

#1     Inspiring others brings me great joy. If one of my blog posts helps even one person with lupus live a more fabulous life, I will consider my words a success.

Take Care,

Katina Rae Stapleton

“My Thoughts on Healing” by Guest Blogger Loolwa Khazzoom, Founder of Dancing with Pain®

Here is the way I intuitively have approached healing throughout my life:

  1. You become aware of something that doesn’t feel right. You feel something off in your body. Or a deep voice inside you calls out for change.
  2. You identify what is the root of this imbalance, distress, or dissonance.
  3. You look at all the factors contributing to this imbalance. What is your part? What is the part of other individuals? What is a systemic issue?
  4. You look at the resources you have at your disposal and think about how to put them to use. You think of other resources and of avenues for accessing those resources. You put your creative thinking to use.
  5. You engage in whatever it takes to transform on your end – not only to clean up your side of the street, but to purify yourself inside and manifest your authentic self in your body, your mind, your spirit, and your life. This involves taking risks without any assurance of the outcomes.
  6. You lovingly and honestly, with your best communication skills, challenge those contributing to the issue to reflect on their own contributions to the problem. You hold out your hand to solve the problem together.
  7. You accept that some people are limited in their thinking, their vision, or their ability, and that they may not be interested, willing, or able to participate in the healing. You then have to do an additional level of healing – letting go of those people, or learning how to co-exist with them, without opening and re-opening wounds, without compromising your own ability to fly. This is the step I became aware of more recently in my life. I used to think we all had the same capacities and interests. I now know that is not the case. Some people are married to or marred in suffering. They don’t want to heal. They thrive off of being victims. Other people have chemical imbalances, mental illnesses, personality disorders. Some people just don’t have the energy or mental capacity. Anyhow, this part is super tough for me, because what do you do when you realize you are not even on the same planet as people you love? And when you realize that having them in your life just hurts you over and over and over, but you really don’t want to let them go, because you very clearly can see the path to healing and how that would benefit everyone involved.

Anyhow I’m laying out my seven steps to healing because I think people get stuck in various places along the way, or they try to jump over some of the steps, to get the goodies at the end – the nirvana. But the nirvana only comes through the process. And as I discussed with myself back in my twenties, as I was going through the process myself, you can’t be doing all the soul-searching and digging and risking so as to get those goodies at the end. Because then you’re not really doing it. You’re just going through the motions. And that is not authentic at all. That’s just pantomime.

About Loolwa

Loolwa Khazzoom is the founder and CEO of Dancing with Pain®, a health & wellness company that offers natural pain relief solutions and that has been featured in media outlets including ABC News and The New York Times. Loolwa has written about health & wellness in general, and natural pain relief in particular, for media outlets including The Washington Post, CNN, Yoga Journal, Self, BBC News, The Boston Globe, and AARP.

Watch Loolwa and a lupus patient talking about Dancing with Pain® on ABC.

Her blog Dancing With Pain® is available online at Dancingwithpain.com. Here you will find a unique mix of personal storytelling, investigative journalism, and political activism, all centered around the theme of living with and healing from chronic pain. Whether revealing the magical powers of dance, exposing common forms of medically negligent behavior, providing nutritional tips for natural pain relief, or getting real about the loss and grief that accompany pain, this blog is raw and uncensored — offering a cutting-edge blend of personal experience, spiritual wisdom, and punk rock attitude. This post “My Thoughts on Healing” is a modified version of a post on the Dancing with Pain® blog originally published on January 13th, 2011.