A Mother’s Journey of Living with A Teenager with Lupus by Guest Butterfly Marier Stapleton (My mom!)

In honor of all the mothers of chronically ill children & teens. Happy Mothers Day!

Butterfly Lessons

One very cold winter morning, my fourteen-year old daughter had a seizure and was taken to the emergency room.  Numerous tests were administered.  The doctors that morning did not find anything physically wrong with my daughter based on the results of the tests.

Hours later, I took her to our general practitioner who also ran a series of tests.  All of the tests came back negative.  Our  general practitioner made several referrals to specialists..  Their tests came back negative also.  Our general practitioner was perplexed and decided to refer her to a psychiatrist.

I recall us sitting in the psychiatrist’s office being asked a series of questions.  After several hours of interviewing my daughter and me, he concluded that the illness was probably physical and not emotional.  On our drive home my daughter looked up at me with a smile and said to me that the psychiatrist needed counseling, not…

View original post 1,154 more words


T25: Day 1 Butterfly Style

One of the hardest things for me to deal with over the years is my yo-yo relationship with physical fitness. I have had periods when I build up my stamina and can walk 2 miles a day! But I have also had flares when I could barely walk from the store to my handicapped parking spot. And the shift between the two (active vs. barely walking) can be abrupt, sometimes shifting back-forth in the same day, or slow with months of activity followed by months of chronic fatigue.

Over the past year I have been trying to build up my stamina so that flares won’t be as bad. I started slow – transitioning from many months of PT to water aerobics and gentle yoga.

But tonight I jumped into the deep end & decided to try T25.  On the surface this idea seemed a tad crazy. Just about every time I try an exercise program that is not aquatic, I injure myself. But this time seemed different. I spent so much time in PT that I learned what I can & can’t and how to modify exercises properly.

So tonight I did my first T25 workout. I used the modified T25 exercises as my guide and then modifying them even further when necessary. The key was to keep moving for the entire 25 minutes. When they did moves that were too hard or might trigger a prior injury I just walked in place (I learned that trick from “Walk Away the Pounds” years ago). I estimate that out of the 25 minutes, I walked 10 & did 15 minutes of the modified exercises.

That’s fabulous! I hope I still feel that way in the morning!



Man Loses 70lbs So He Can Donate Kidney To Wife

A Lupus Love Story from BlackDoctor.org

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

Butterfly Lessons

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…

View original post 376 more words

Butterflylessons.com is Back!

Hi everyone, it is super embarrassing how long it has been since I have posted anything to my lupus blog (so long, in fact, that I let my domain name expire).

What’s up with me? As always, I have had some health challenges, but I also have been blessed with a job that accommodates my condition and a loving, supportive family. Now that I am back in the blog-o-sphere, I plan to share highlights (and low-lights) from my day-to-day life in the hopes that my story will help others with lupus or other chronic health conditions.

It’s late, so I am turning in. A good night’s sleep is key to living a fabulous life with lupus.




Butterfly Selfie – Have hat will travel – Israel beach #lupus #fibro

Stand Up, Be Strong

“Don’t let your young life get you down” 

   Brand New Heavies, Brother Sister

Tonight I was driving to exercise class and one of my favorite songs, Brother Sister, by the Brand New Heavies came on. I started listening to the lyrics and was struck by how blessed I am and how far I have come over the years.

I remember so clearly how when I was a child I tripped and fell all the time. I wonder now if that imbalance problem was an early sign of the lupus to come. In my preteens I started getting terrible pain in my legs. By high school my legs would swell like a sausage sometimes and in college I went through a lupus flare in which I couldn’t really walk. I literally could not lift myself up from a seated position without help. Once up, my legs would shake and it felt like a puff of air would knock me over.

Fast forward to today, I am not only standing and walking, I am going to a dance-based exercise class three times a week. If that isn’t a miracle, I don’t know what is.

Stand up
Be strong go out there
Hold on
To the real things that matter
‘Cause no one’s gonna hand’ em to you
On a silver platter

Brother Sister, Brand New Heavies

So my Butterfly Lesson for today is borrowed directly from the Brand New Heavies: Don’t let lupus keep you down. Stand Up and Be Strong!

Take Care,

Katina Rae Stapleton

P.S. Check out BNH performing this live.

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