Category Archives: HAWMC

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 Picture Speaks a Thousand Words: A Butterfly Lessons Wordle (#HAWMC 30)

Today is last day of April and the Health Activist Writer’s Month Challenge hosted by Wego Health is coming to an end. My task today was to “make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests.” I used Wordle, an online program to generate word cloud of the text that appears in ButterflyLessons.com.

Wordle: Butterfly Lessons: Living a Fabulous Life with Lupus

I think this makes a pretty picture. I hope you have enjoyed my posts. I will be wrapping #HAWMC with a closing post on May 1, 2012. Then I look forward to blogging about lupus during May for Lupus Awareness Month.

Take Care,

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.

Five Challenges & Five Victories of Lupus (#HAWMC 27)

Today’s Health Activist Writer’s Month Challenge Prompt is:

“Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.”

So, without further ado . . . .

Top 5 Most Difficult Things About Having Lupus for 20+ Years

1.    Lupus is painful
2.    Lupus is exhausting
3.    Lupus is “mysterious” & hard for people to understand
4.    Lupus gave me “Funny”, sensitive skin
5.    Lupus can affect any part of my body at any time

 Top 5 Small Victories That Have Kept Me Going 20+ Years with Lupus

1.    I developed an “Iron Will” to survive and thrive
2.    I do not take feeling good for granted
3.    I discovered that I have wonderful family & friends that love me
4.    Lupus provided inspiration for me to write
5.    Telling my story helps me help others with the disease

Keep strong and carry on,

Katina Rae Stapleton

P.S. In Dinner for Five I wrote that I would have loved to meet Orison Swett Marden, the author of An Iron Will. This is one of my favorite passages:

“Yet in spite of all this, in defiance of it, we know that an iron will is often triumphant in the contest with physical infirmity. Brave spirits are a balsam to themselves: There is a nobleness of mind that heals Wounds beyond salves.”


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.”

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.

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

Patiently I Have Never Run: A Mad Lib Style Poem about Lupus (#HAWMC 21)

Today’s HAWMC prompt was to write a poem in a Mad Lib format. So, I went to http://languageisavirus.com/cgi-bin/madlibs.pl and filled in parts of speech with words that reminded me of living with lupus.

This is the e.e. cummings inspired poem that was generated.  It doesn’t quite make sense, but neither does Lupus. I hope you enjoy it.

Lupus

patiently i have never Run, quietly beyond
any Lupus, your Sun have their Outstanding:
in your most Painful Work are things which Fear me,
or which i cannot Protect because they are too final

your Exhausting look now will unRelax me
though i have Succeed myself as Money,
you Trust always Day by Day myself as Fatigue Worry
(Yawning recently , soon ) her Frustrating Anxiety

or if your Doctor be to Help me, i and
my Massage will Rest very much, amazingly,
as when the Pain of this Lupus Sleep
the Joy brazenly everywhere Playing;

nothing which we are to Cry in this Sorrow Shout
the Loss of your Glorious Freedom: whose Friends
Sing me with the Rash of its Sun,
Dancing Enemy and Nap with each Considering

(i do not Exercise what it is about you that Encourage
and Heal; only something in me Improve
the Starbursts of your Sun is Hopeful than all Fatigue)
Medicine, not even the Heat, has such Perfect Shoes

– Katina Rae Stapleton & e.e. cummings

Create Your Own Madlib on LanguageIsAVirus.com

Take care,

Katina Rae Stapleton

Starburst Candy Cures Lupus! . . .I Wish (#HAWMC 20)

Today’s HAWMC prompt is:

Write a news-style article on a miracle cure. What’s the cure? How do you get the cure?

In my other life as a pop culture expert, I fell in love with tabloids. So my story is short, sweet, and ready for the National Enquirer.

Starburst Candy Cures Lupus!

Dr. Katina Rae Stapleton has discovered the cure for Lupus pain – Starburst Candy. Katina has had lupus since she was a teen. One year she went South for a family vacation and was bed-ridden at her grandparents’ homes for two weeks. She ran out of prescription pain meds and decided to pretend that Starbursts would stop the pain. It worked, but Katina was sure the cure was only in her mind. Years later after she went to graduate school and learned how to conduct scientific studies, Katina secretly tested the Starburst cure on herself. Every time her muscles hurt she eats Starbursts instead of taking painkillers. She gained a lot of weight, but is now pain-free. Even if this turns out to be a placebo effect, Starbursts rule.

Disclaimer: This story is sort-of-true. Katina really was stuck in bed for TWO weeks and ate packs and packs of Starbursts to keep from crying. Even though she still believes in her heart-of-hearts that candy makes the world a better place, she can’t prove that Starbursts stop lupus pain. If you have lupus pain, get proper medical treatment. And perhaps a massage (if your doctor thinks it is a good idea).

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