Tag Archives: Chronic (medicine)

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

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).

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

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

Finding Butterfly Lessons in My Favorite Books? (#HAWMC 12)

Today’s #HAWMC topic is: Stream of Consciousness Day. Start with the sentence “_______”just write, don’t stop, don’t edit. Post!

When I checked the prompt this morning before work I had no idea what I wanted to blog about and figured that I would just write it tonight. But between checking the prompt and opening WordPress, I spotted this blog post

Taking Away One New Lesson From Each Book You Read

from Transitionelle.

I thought to myself. What I wonderful idea! Reading is one of my favorite things in the world. I probably read 5 books a week while I commute to and from work. They are a mixture of fiction and non-fiction. Often, when I read self-improvement type books for women or the general public, I am often struck by how well (or how badly) the advice might translate for people with chronic illnesses.

I think as I read, I am also going to take down “Butterfly Lessons” for my fellow lupus warriors and spoonies and post them on my blog. I think I might start with some old favorites: If you have to cry, go outside, Does Clutter Make My Butt Look Fat?, Princess: You Know Who You Are, the Art of War for Women, and Getting Things Done.

Have a great day! I am off to work smiling (which is code for my arm hurts like crazy, but I will smile all day anyway, because even though I hurt I smile!).

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