Category Archives: Favorite Things

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

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Hats are this lupus patient’s best friend (Health Activist Writers Month Challenge #1)

Today is Day 1 of the Health Activist Writer’s Month Challenge sponsored by Wego Health. I hope to use each day to provide a Butterfly Lesson based on the #HAWMC prompt.

Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

If I had to make a time capsule that represents my journey with lupus, it would be full of hats. Why hats? Like most people with lupus, I am pretty sun sensitive. Sunscreen is a must year round, but I often found that sunscreen wasn’t enough. In the spring and summer, I use hats as an extra layer of protection against the sun’s rays. In many ways, I have been lucky. It turns out that I love hats and don’t mind wearing them. Over the years, I have developed a pretty large collection of hats, including church hats, Kentucky-derby style hats, visors, and baseball caps.

When choosing a hat, making sure it fit my head was the first step. There is nothing worse than a hat that is too small for your head! Next I would decide how much coverage I really needed. While I like small brimmed hats, they don’t provide enough protection for very sunny places. I’ve found that visors protect well from the front, but leave the side of my face exposed. My “big floppy” hats tends to provide a lot of coverage, but limit my side vision (which is a problem while crossing the street).

If possible, I like to wear hats that are UPF rated (meaning they are treated to block UV rays). I have always been able to find them in my local store, but they are also available online at places like Coolibar, and Sun Precautions.

Finally, my hats have to be cute. After all, if you have to wear a hat much of the time, you might as well look good.

Here’s a virtual look at the hat styles you would find in my time capsule:

The Kangol Fedora:

UPF Visor

Wrap-around UPF Visor

Shapeable UPF Sun Hat

Wide-brimmed Sun Hat

UPF Ball Cap

Katina Rae Stapleton

“My Thoughts on Healing” by Guest Blogger Loolwa Khazzoom, Founder of Dancing with Pain®

Here is the way I intuitively have approached healing throughout my life:

  1. You become aware of something that doesn’t feel right. You feel something off in your body. Or a deep voice inside you calls out for change.
  2. You identify what is the root of this imbalance, distress, or dissonance.
  3. You look at all the factors contributing to this imbalance. What is your part? What is the part of other individuals? What is a systemic issue?
  4. You look at the resources you have at your disposal and think about how to put them to use. You think of other resources and of avenues for accessing those resources. You put your creative thinking to use.
  5. You engage in whatever it takes to transform on your end – not only to clean up your side of the street, but to purify yourself inside and manifest your authentic self in your body, your mind, your spirit, and your life. This involves taking risks without any assurance of the outcomes.
  6. You lovingly and honestly, with your best communication skills, challenge those contributing to the issue to reflect on their own contributions to the problem. You hold out your hand to solve the problem together.
  7. You accept that some people are limited in their thinking, their vision, or their ability, and that they may not be interested, willing, or able to participate in the healing. You then have to do an additional level of healing – letting go of those people, or learning how to co-exist with them, without opening and re-opening wounds, without compromising your own ability to fly. This is the step I became aware of more recently in my life. I used to think we all had the same capacities and interests. I now know that is not the case. Some people are married to or marred in suffering. They don’t want to heal. They thrive off of being victims. Other people have chemical imbalances, mental illnesses, personality disorders. Some people just don’t have the energy or mental capacity. Anyhow, this part is super tough for me, because what do you do when you realize you are not even on the same planet as people you love? And when you realize that having them in your life just hurts you over and over and over, but you really don’t want to let them go, because you very clearly can see the path to healing and how that would benefit everyone involved.

Anyhow I’m laying out my seven steps to healing because I think people get stuck in various places along the way, or they try to jump over some of the steps, to get the goodies at the end – the nirvana. But the nirvana only comes through the process. And as I discussed with myself back in my twenties, as I was going through the process myself, you can’t be doing all the soul-searching and digging and risking so as to get those goodies at the end. Because then you’re not really doing it. You’re just going through the motions. And that is not authentic at all. That’s just pantomime.

About Loolwa

Loolwa Khazzoom is the founder and CEO of Dancing with Pain®, a health & wellness company that offers natural pain relief solutions and that has been featured in media outlets including ABC News and The New York Times. Loolwa has written about health & wellness in general, and natural pain relief in particular, for media outlets including The Washington Post, CNN, Yoga Journal, Self, BBC News, The Boston Globe, and AARP.

Watch Loolwa and a lupus patient talking about Dancing with Pain® on ABC.

Her blog Dancing With Pain® is available online at Dancingwithpain.com. Here you will find a unique mix of personal storytelling, investigative journalism, and political activism, all centered around the theme of living with and healing from chronic pain. Whether revealing the magical powers of dance, exposing common forms of medically negligent behavior, providing nutritional tips for natural pain relief, or getting real about the loss and grief that accompany pain, this blog is raw and uncensored — offering a cutting-edge blend of personal experience, spiritual wisdom, and punk rock attitude. This post “My Thoughts on Healing” is a modified version of a post on the Dancing with Pain® blog originally published on January 13th, 2011. 

The healing power of dance: introducing guest blogger Loolwa Khazzoom of Dancing with Pain

“Be aware of wonder. Live a balanced life–learn some and think some and draw some and paint and sing and dance and play and work every day some.” Robert Fulghum

I have always loved to dance. It is truly one of my favorite things, second only to reading. But over the past few years, the pain and fatigue of lupus and fibromyalgia made shaking my tail feathers a daunting prospect most of the time. I satisfied my dance love by becoming an avid watcher of reality-tv dance shows from So You Think You Can Dance to Dancing with the Stars.

But right about the time I did my first vision board in 2010, I decided that watching dance was not enough. I no longer wanted to be a couch potato wrapped in a fuzzy blanket with my trusty heating pad by my side. I wanted to dance again. I started slowly, occasionally joining my best friend from college to dance to DJ Dredd at the Black Cat. Then this past year, I decided to try salsa, hanging out with another friend at salsa nights across the DC metro area. Sometimes the next day I was miserable, with sore muscles from dancing, while other times, I would wake up feeling perfectly fine. I decided that pain-or-not, I enjoyed dancing again.

This summer I am embracing dance. And for those of you who also yearn to dance despite lupus, I will provide updates on my dance-capades which include salsa lessons and a workshop on Moroccan Healing Dance.* You might even see pictures of my dancing the night away on my upcoming cruise vacation!

One of my dancespirations has been the blog Dancing with Pain written by Loolwa Khazzoom, chronic pain expert and the founder and CEO of Dancing with Pain, a health and wellness company that offers natural pain relief solutions.  Look out for the upcoming Butterfly Lessons guest blog post this Friday, May 27th contributed by Loolwa called “My thoughts on healing.”

May you find your passion and pursue it.

Take care,

Katina Rae Stapleton

* You may be thinking: “Wasn’t her last blog post about being in too much pain to willingly give up her seat on the commuter train?” Yes it was! That is the beauty of dance. I have found that when I dance, I don’t seem to feel the pain as acutely. Please don’t take this as medical advice though. If you plan to start dancing (or any kind of exercise, really), you should contact your doctor first for feedback. This is actually my third set of salsa classes. I completed the first set successfully, but had to quit the second because I was too sick to attend. I keep thinking that the third time is the charm. I won’t let salsa defeat me (LOL). You’re probably also thinking, “Moroccan Healing Dance? What in the world is that?” Well, every year the Belly Dancers of Color Association (BOCA) holds a Movement and Wellness Expo in the DC area on Memorial Day weekend. This is the first year I will be in town and I signed up for the healing dance class and a class on reflexology. I have not the slightest idea what I am in for, but believe that I am going to have a fabulous time. I will let you know how everything goes.

It’s a new day for Feeling Good

As I rang in the New Year, I thought of one of my favorite songs “Feeling Good” by Nina Simone. Her lyrics represent the exact opposite of New Year’s resolutions. This January, instead of coming up with a list of things that you will chastise yourself about if you don’t accomplish them, embrace life.  Sing with me:

Birds flying high you know how I feel
Sun in the sky you know how I feel
Breeze driftin’ on by you know how I feel

It’s a new dawn
It’s a new day
It’s a new life
For me
And I’m feeling good

Consider all the possibilities that 2011 brings: New experiences, new joys, new chances to feel better.

And this old world is a new world
And a bold world
For me

The Butterfly Lesson: So what if 2010 brought exhaustion and pain! Each day in 2011 brings a new day, a new dawn, and a chance to say “I’m feeling good!”

Take care,

Katina Rae Stapleton

Butterfly Bonus: While Jennifer Hudson (above) did a fabulous rendition of Feeling Good, there is nothing that matches classic Nina Simone. Enjoy . . .

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