Tag Archives: childhood lupus

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

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.

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

A Perfect Day, With Lupus (#HAWMC 14)

Today marks my 14th day Blogging for the Health Activist’s Writers Month Challenge. I am excited that I blogged 2 weeks in a row without having to use a get-out-of-blog-free card. If you have been following the posts, I would love to hear from you. Please feel free to leave a comment on the page or send me a message through Facebook or Twitter.

So, now let’s turn to my perfect day . . . .

My requirements for a perfect day are very simple, though harder to achieve than I wish. I simply want to wake up without any pain and fully rested and stay that way for an entire day.

Katina Rae Stapleton

P.S.  I saw this lovely quote that represents my wish for all my lupus butterflies:

This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.” Unknown

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

Have Lupus, Will Travel (HAWMC #5)

Today’s HAWMC prompt was: “Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When I explored Flickr, I spotted this lovely (copyrighted) picture by Rob Dickenson of Hawea. It reminded me very much of my own travels around the world. When I first was diagnosed with lupus as a teen, I was terribly afraid that I wouldn’t be able to travel or that I would travel, but get sick on the road. Over the years I have had a chance to travel several times to the Caribbean, to Europe and across the United States (even Hawaii and Alaska). I came up with several rules that help make traveling easier for me:

  1. I make sure I have all my medicine, including meds I take regularly and “emergency” meds that I might need if I have a flare.
  2. I plan for proper rest. On my last cruise I went to be around 9 pm every night (crazy early!) because that is what I needed.
  3. I pack things that I can use to battle muscle and joint pain. I always, always, have some sort of heating pad in my luggage.
  4. I always respect the sun. Even though I frequently go to very sunny places, I try not to tempt fate too much. I pack my trusty hat collection, sunscreen and shades and try not to linger in the sun during the heat of the day.
  5. I make sure I have at least one day after the trip to rest before returning to work. This allows me to unwind from the trip (flying sometimes makes me sick) and gear up for the 9-to-5.

If you have lupus and love to travel, what do you do to make your trips go smoothly?

Katina Rae Stapleton  

Lupus Lessons from Star Trek TNG: (Health Activist Writers Month Challenge #2)

Day 2 of HAWMC 2012: Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

I must confess that I spent most of my 15 minutes trying to decide what quote I was going to write about today. I finally settled on some wisdom from one of my favorite tv series: Star Trek TNG:

It is possible to commit no errors and still lose. That is not a weakness.            That is life.
-Captain Picard to Data, Star Trek: The Next Generation, “Peak Performance”

Since I was diagnosed as a teen I have worked very hard to take care of myself and try to minimize the effects of lupus on my health. In the early years, I made many rebellious decisions, such as flushing my medicine down the toilet, sunbathing on the beach, and not getting enough rest. As you may suspect, this triggered lupus flares and I became very, very sick.

Other times, things would happen that were outside of my control that would also trigger flares, like getting caught in the rain, sitting in cold classrooms, or experiencing really stressful events.

What all of these things have in common is that I could see (or at least figure out) the connection between the event and the lupus flare. What has been much harder to deal with is the randomness of lupus flares that are both out of my hands and have no apparent rhyme or reason.

What I take from the Star Trek quote is that sometimes bad things happen that are not your fault. You could do everything that your doctor suggests and still have a flare. That is life and that is lupus.

Katina Rae Stapleton