Tag Archives: high school

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.

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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

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).

Hot off the Press! Butterfly Lessons Founder is in the Washington Informer!

I’ve had such a great time as the Co-Chair of the 2011 DC Walk for Lupus Now! One of my most important goals was to raise awareness of the disease in the DC Metro area.  Today I am featured in the Washington Informer on page 17.  Click on the picture below to read the advertorial.  I think it’s fabulous (if I do say so myself)!

Katina Rae Stapleton

"Living with Lupus", The Washington Informer, April 14-20,2011 Edition, pg. 17

 

Butterfly Wrestling

“Do what you can, with what you have, where you are.” Theodore Roosevelt

This is a story about making lemonade out of lemons, or in my case earning a letter in a high school sport even though lupus prevented me from being an athlete. When I was in high school I was a nerd. Since I went to a science and technology high school I fit in perfectly. But underneath my bookworm nature, I had secret dreams of being an athlete. Most of my friends were scholar-athletes, combining a challenging academic course load with indoor and outdoor track, cheerleading, or Poms (dancing). Every time they had a game or match, I looked on from the sidelines because I knew that participating in team sports was out of my range. I had learned the hard way during my freshman year when I tried out for track. It only took a couple days before the tryouts triggered a massive lupus flare and I ended up having trouble walking. After that, my parents and friends gently and lovingly suggested that perhaps I should pick after school activities that didn’t require any physical activity. So I did. I joined the school newspaper and successfully ran for student government. But I always had a picture in the back of my mind of my being part of a sports team, even though I had no idea how that might happen.

My junior year in high school, a friend of mine pulled me aside and said something like “hey if you still want to be part of a sports team, you could always join the wrestling team.” The wrestling team was looking for student physical trainers to assist the school’s sports teams with minor injuries in the absence of the senior (adult) physical trainer.

I am sure my friend meant the idea as a joke, but it turned out to be a genius idea. I loved wrestling! I was a closet professional wrestling fan as a kid and would watch it all the time with my father. And I definitely understood pain. So to the surprise of all of my friends I tried out to be a physical trainer and was assigned to the Eleanor Roosevelt High School wrestling team. My main duties were to bind up swollen ankles and knees and massage sore muscles. With my fellow trainer Jill, I went to every practice and match and traveled with the team. I had the best time ever.

The most fantastic part was that I didn’t have to be an athlete to be part of a team. The wrestlers were like my brothers. Sometimes they acted like pesky little brothers and teased me (especially about boys). Other times, they took on the role of protective older brothers, watching out for me if I didn’t feel well. One wrestler who shared a class with me would even go out of his way to make sure I had the notes if he saw that I was in pain during class. Even though I thanked him, I was never sure he really understood how much that meant to me.

After two years, I earned my very own letter in wrestling.

The Letter and pin I earned as a physical trainer for my school's wrestling team!

In that time, I learned a valuable Butterfly Lesson: If you open yourself up to the world of possibilities, great things can happen.

Now that’s fabulous!

Katina Rae Stapleton

P.S. This week I will be blogging every day in support of National Invisible Chronic Illness Awareness Week (September 13-19, 2010) started in 2002 by Lisa Copen. The event features a variety of ways to get involved, including a free virtual conference on September 13-17 with speakers each morning from 10:30 am – 12:00 pm, USA Pacific time. You can also go to the website to download a free 80-page ebook on living with an invisible illness.