Tag Archives: teen 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.

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).

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

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 her.  Light moments like that kept us with a sense of humor which helped us deal with the situation.

Before my daughter becoming ill, I was determined not to spoil her. She was our only child.  My motto was “Do you need that”?  After she became ill I went on a spending spree for her.  One day I came home with a pair of navy blue shoes for her.  She politely opened the box and looked up at me.  She told me the shoes were really beautiful but that was the sixth pair of expensive shoes that I had bought her in a month.  I knew I needed to get a grip on my emotions and I felt guilty that I was on such an emotional rollercoaster especially since I was a counselor by trade.

The following twelve months were very traumatic for my daughter.  She became sicker and sicker and missed many days from school.  She lost a lot of weight, her hair fell out, and her equilibrium was off which resulted in her falling often.  She also experienced problems with her vision.  The general practitioner suggested that my daughter return to the rheumatologist for another evaluation but instructed us to ask to see a different rheumatologist. This time the rheumatologist started her on medication, took blood and ran more tests.  He gave her a 2-week follow-up appointment.  At the follow-up he diagnosed her with Systemic Lupus Erythematosus .  He also told her that when he saw her 2-weeks prior, he felt 99% the diagnosis would be Lupus.

The term Lupus was not completely foreign to me because a 6th grade student at the middle school where I worked as a school counselor had Systemic Lupus Erythematosus.  She spent many hours in my office talking about the disease and the frustrations about having such a debilitating disease.  She wore a wig because her hair fell out.  Wearing a wig was very upsetting to her because she was teased often by other students.  She left our school after a year and a half to live with her father.

A week after my daughter was diagnosed with Lupus, the student’s mother called me to tell me her daughter had lost her battle with the disease and died.  The news was devastating.  I remember going to the restroom and crying uncontrollably for the mother and for myself.  The fear of losing my 14 year old set off a panic in me that I can’t describe.

The year prior to her diagnosis, when my daughter spent many days traveling to specialist after specialist, was one of the most difficult years of my life.  I tried to schedule appointments early mornings or afternoons to minimize the time she miss school and the amount of time I miss from work.  Being a counselor in a middle school was taxing even in normal circumstances.  Often times after listening to students problems and answering calls from irate parents all I felt like doing was turning out the lights and curling up in a ball and going to sleep.   Instead, I managed to present a warm and caring atmosphere for the students and the parents.

Each day looking at the changes in my daughter left me feeling helpless and a pain in my heart that medication couldn’t ease.  The fear of not knowing what was wrong was worse than the fear of knowing. I lived that year in a fog.   Several days on my way to work I would be so consumed with my daughter’s illness that I passed my exit to work.  One day in particular, I drove approximately 10 miles pass the exit.  When I realized that I had driven so far pass my exit, I pulled off on the shoulder and cried.  It took several minutes for me to refocus and turn around and continue to work.  Another day I went to the grocery store and purchased groceries.  I left the groceries on the sidewalk to get my car.  I got in the car drove home pull up in the driveway and couldn’t remember why I left the house.  I sat in the car for what seemed forever with tears streaming down my face.  Then I heard a soft whisper in my ear, “groceries my dear”.

Many days on the 45 minutes drive home from school, I stopped for coffee to drink to keep me from falling asleep behind the wheel.  I fell asleep several times traveling home and I know it was only God’s grace that keep me from having a major accident.

I always felt that I was a person of strong faith.  Even though my family’s faith was tested during that year, we didn’t lose hope and give up.  We continued to pray daily and seek answers. One night during Bible study I felt that my family’s faith was being questioned.  The discussion in class that night in essence was that if a person had enough faith, physical healing would take place.  I left the complex that night and drove home in a fog.  I didn’t remember stopping for red lights.  All I remember was the tears rolling down my cheeks and a talk I had with God.  I told God I could handle whatever the diagnosis was but I couldn’t handle not knowing.  I walked in the house that night with a sense of peace that things would be alright.  The next week my daughter had a diagnosis.

The rheumatologist that made the diagnosis was very knowledgeable.  He encouraged us to attend workshops and conferences to learn as much as we could about the disease.  He talked to us about living a productive life with lupus rather than succumbing to the disease.

After treatments, my daughter began to feel better and excelled in school.  She graduated from high school and college with honors.  She also earned a doctorate in Political Science.  Currently, she leads a productive life and manages pain and the disease.

The Butterfly Lesson: My advice to parents of children or teens with lupus is . . .

1.       Don’t be afraid of the disease.  Embrace it and learn as much as possible by attending workshops, conferences, reading literature and visiting reputable internet sites such as the Lupus Foundation of America, the S.L.E. Lupus Foundation, or the Lupus Alliance of America.

2.       Find a doctor that listens to your concerns and is knowledgeable about immune disorders including arthritis, lupus, chronic fatigue, fibromyalgia, etc.

3.       Don’t assume that your child is a hypochondriac.  Embrace her or him and offer positive ways of reducing some of the stressors in your child’s life.

4.       Don’t embrace people that question your faith.  Your level of faith is your personal journey with God.

5.       Celebrate life to the fullest.  This may include changing and rearranging some of the things in your family’s lives.

_____________________________

 

Marier (pictured right) and Katina (pictured left) Stapleton show off their Butterfly Style!

Marier Stapleton, in addition to being my mother, is a retired school counselor.