Category Archives: Theme Songs

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.

I’m Walking

“Some people say walking takes too long
But I say with walking you can’t go wrong”

All week I have been grooving to Mary Mary’s song “I’m walking.” As I go about my business, I sing the verse in my head:

Tell me what you see when I pass by
Shadow a cloud or a light in the sky
Am I getting it wrong or am I getting it right
Well all I can take is one, one step at a time

I ask myself, what does my lupus walk say about me?

What does my life say about me?
Can anyone see?
Does it show I rock with the greatest?
I can’t get back the time I spent
Use the rest of it to show all the world how I made it

Then I sing the chorus

I’m walking I’m walking I’m walking
I’m walking I’m walking I’m walking
I’m walking I’m walking I’m walking
I’m walking I’m walking I’m walking

What makes me so excited about the song is

a)      I can walk! Most people take that for granted. But when I was in college I had a lupus scare and could barely walk or stand.  Since I recovered, I give thanks every day that I can get out of bed and walk on my own.

b)      I can walk for Lupus! Across the country, people are gearing up for the 2011 Lupus Foundation of America’s Walk for Lupus Now to raise awareness of the disease and needed funds for research, outreach, and patient services.

As the head of Team Butterfly Lessons I will be putting on my walking shoes on April 16th for the 2011 DC Walk for Lupus Now.  Check out the Lupus Foundation of America- DC/MD/VA chapter’s DC Walk website for general information on how to form your own team or walk. If you would like to walk as part of Team Butterfly Lessons email/tweet/or FB me to let me know and then sign up on the team website. I would love to have you.

This year I will be doing double-duty as Co-chair of the DC Walk for Lupus Now with the fabulous Krista Blackburn of Team Kickin it 4 Krista. I feel very blessed to serve in this role and am excited to enlist the Butterfly Lessons family in my efforts to make this a successful event. If you have walk suggestions, feel free to contact me or Kassandra Kearse of the Lupus Foundation DMV.

If over the next few days, weeks, or even months you feel yourself struggling with living with lupus, check in with your doctor and reach out to the Lupus Foundation or other lupus organizations for support.

Keep walking,

Katina Rae Stapleton

P.S. If you are in the MD/DC/VA area, please join me at the free 2011 DC Walk for Lupus Now Kickoff Party on Tuesday, February 15th in Rockville, MD. To RSVP email your name and number of guests to development@lupusdmv.org or call 202-223-1828.

Austin Grill
36 Maryland Avenue, Unit A
Rockville, MD 20850
Metro Station: Rockville
5:30-7:30 pm

A Few of My Favorite Things . . .

“When I’m feeling sad
I simply remember my favorite things
And then I don’t feel so bad”

 My Favorite Things, The Sound of Music

During the holiday season, people with lupus are often expected to be happy, cheerful, and grateful, but find that difficult because the physical and emotional effects of lupus causes them to feel exhausted, in pain, and generally miserable.  

Over the years, I have developed a tried-and-true strategy for myself to insert a note of levity back into the holidays if I become overwhelmed. The Sound of Music  is one of my favorite movies and it seems to always be shown around Christmas. One of the best songs in the film is “My Favorite Things.” In it, Maria (the nun) advises the Von Trapp children she supervises that you can battle all sorts of bad things by calling on thoughts of your favorite things. Watch here.

 “Cream colored ponies and crisp apple streudels
Doorbells and sleigh bells and schnitzel with noodles
Wild geese that fly with the moon on their wings
These are a few of my favorite things”

Like Maria, I have many favorite things, but I have narrowed it down to a few that make me laugh or bring me joy when I think of them.

1. Family trips with my parents. Since I was a teen we traveled the world together. They have always helped me make sure that the trips were lupus-friendly.

The Stapleton Family on vacation in Mexico (Check out the sun hats!)

2. Hot Fudge Cake. 100% wonderful, this should require no explanation, but if you need one: “Hot Fudge cures many ills.”

Pictured: The original Big Boy's Hot Fudge Cake

 3. Deep Tissue Massage – I love, love, love massage for my lupus/fibromyalgia. It makes my muscles and aching joints feel so much better.

Massage Therapy is frequently used for people with disabilities

4. Star Trek. This is my guilty pleasure! If Geordi Laforge can conquer space, then I can conquer living with lupus!

Pictured: Geordi La Forge, the blind chief engineer from Star Trek: The Next Generation

#6 Miscelaneous Amusing Objects. Throughout my home and office I keep small funny/amusing objects that I like to look at if I am feeling stressed out or taking myself to seriously. I love to buy “happy pens.” I have all different versions of pens that are pretty useless, but very funny.

A Disney Princess and the Frog "Magic Wand" pen bought for me by a friend

What are some of your favorite things?

Take Care,

Katina Rae Stapleton

Living your life like it’s GOLDEN!

One of the great things about the internet is that it allows people with lupus to locate others who share the disease and learn from them. One of my favorite inspiration-blogs is written by Juliana Joie, a lupus and fibromyalgia survivor that embraces life to the fullest and is actively working to share her blessings with others.

This afternoon I checked my email and spotted Juliana’s monthly newsletter.  She included a powerful message about making the rest of 2010 fabulous:

“It is a wonderful time to seek clarity inside yourself and choose which goals are the juiciest, richest, and most powerful for you! Remember that saying “No” to some things can mean a great big “YES” to other things!

  • As you reflect on 2010, what accomplishments do you want to savor?
  • What will fulfill your heart’s deepest longing?
  • How will you create the life you love with these precious 12 weeks?”

It was a very timely message for me because I just decided that my end of the year goals are to relax and have a good time. I’ve even adopted a theme song. For the next three months I’m going to live my life like it’s Golden . . .

I’m taking my own freedom
Putting it in my song,
Singing loud and strong,
Grooving all day long,
I’m taking my freedom,
Putting it in my stroll,
I’ll be high-steppin’ y’all,
Letting the joy unfold.

Golden, by Jill Scott

The Butterfly Lesson: Life is too precious to waste. But it is a mistake to believe that you must always be doing something “serious” with your time. Sometimes inaction (rest, relaxation, a deep tissue massage!) is what you need.  Other times you should slip on a pair of your favorite shoes and dance, curl up with the television, read a good book, spend time with your friends and family, or anything else that brings you joy.

You’ve Got to Know When to Hold ‘Em: Can the Gambler by Kenny Rogers help you prioritize your activities?

“Every gambler knows that the secret to survivin’ is knowin’ what to throw away and knowing what to keep.” Kenny Rogers, the Gambler.

September has been one of the busiest months of the year for me.  It presents me with a challenge: how much activity is too much? In my heart and mind I am a social butterfly, but my body doesn’t always agree. When I overdue it, my body says: “Did you forget that you have a chronic illness? Don’t you need your rest?”  This week has been particularly overscheduled. According to my calendar, I was scheduled to:

  • work my 9-5 job with a 45 minute commute in each direction.
  • attend a church committee meeting on Wednesday evening.
  • attend a Saturday morning sorority meeting.
  • have three appointments after work.
  • go to yoga after work.
  • hang out with a friend on Thursday night.
  • hang out with other friends on Friday night.
  • And, write the Butterfly Lessons blog every night this week.

I am tired just typing this list. In fact, I think there are more after-work activities than there are available hours in the evening.

When I really, really, looked at my schedule, I decided it was time that I invoked The Gambler, my lupus theme song, in order to make some crucial decisions about which activities were really important to me and which could be cheerfully deleted.

I love using the lyrics from the Gambler to decide! Here is how I go about it . . .

  1. You’ve got to know when to hold em: “Hold-em” activities are things that you really want to do (or have to do) and it is worth it to you to do them even though they use up your energy.  For example, one of my priorities is to spend more time with my friends, so I do my best to “hold”  one spot in my week to hang out with them.
  2. Know when to fold em:  “Fold-em” activities are things you would like to do, but could wait for another day. They can be deleted from your schedule like this: “I’m sorry, I really would like to do XYZ, but I can’t make it this week.  I can do it on next (week, month, year) instead.”
  3. Know when to walk away: “Walk-away” activities are things that shouldn’t be on your schedule, because you don’t want to do them, don’t have to do them, and/or can’t see any purpose in doing them right now. Who knows, though, you might change your mind later, so you should leave your options open: “I’m sorry, but I won’t be able to attend XYZ, but thanks for thinking of me.”
  4. Know when to run:  “Run-away” activities are almost self-explanatory. They are energy black holes that should be avoided or activities you don’t like or want to do at all. Politeness is key, but you should also get straight to the point. For business, try: “I’m sorry, but I don’t think that this is something I want to be involved in right now, but thanks for thinking of me.” For social situations try: “I am going to have to pass, but thanks for thinking of me.”

The Butterfly Lesson? Consider this great advice from Ashleigh Brilliant: “Sometimes the most urgent thing you can possibly do is take a complete rest” and this advice from me: “When in doubt, cut something out!” Notice that three of the four “Gambler categories” involve not doing the activity. This will leave you with a smaller set of activities that are most meaningful to you. I won’t tell you which activities I dropped, but I narrowed down the list considerably and am now have enough time to curl up on my couch and catch up on a good book.

For other great tips on how to deal with having an invisible illness check out 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.

Take care,

Katina Rae Stapleton

P.S. A Butterfly bonus: I think this is one of the funniest videos ever: Kenny Rogers performing the Gambler with the Muppets!