Tag Archives: physical activity

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 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

“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.

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.