Category Archives: Guest Butterfly Lesson

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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“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.

Making Lupus Divalicious with Ebonique Jones

Over the past year, I have enjoyed meeting people across the DC/MD/VA area as I have talked about Lupus awareness. It has struck me how many people’s lives have been by touched by the disease. At one public speaking event, I had the good fortune to meet Ebonique Jones, owner of Divalicious Sweet Treats, a DC custom cake company. Ebonique’s father suffered from Lupus before he passed away in 1997. In his honor, Ebonique approached me about using Divalicious Sweet Treats to help raise awareness for the disease. One thing led to another and Ebonique became a cupcake sponsor of the 2011 DC Walk for Lupus Now and walked alongside Team Butterfly Lessons.

I asked Ebonique why she felt it was so important for her to walk and help raise awareness of Lupus. She said:

 “I know first hand how this disease not only cripples the patient’s ability to move and get around, but also the family members who try to do everything to their ability to do what’s necessary to care for their family member. When my dad was diagnosed I truly didn’t understand the disease, but I do remember some days he couldn’t get out of the bed. It was heart breaking to see him that way, but my mom did her best to make sure he didn’t want or need for anything. I think it’s important that families get the help and support they need to battle this disease. So I wanted to do my part and give back to the community and help raise awareness for this cause.”

Ebonique Jones (right) shows her Divalicious Butterfly Spirit at the 2011 DC Walk for Lupus Now!

I feel blessed that I was able to meet Ebonique and that she has been able to lend her unique talents to the Lupus Community.

Take care,

Katina Rae Stapleton

P.S. If you live in the DC/MD/VA area and would like some Divalicious cupcakes, check out Ebonique’s website (http://sweetdivatreats.com). 

McCulley’s Miracle by Guest Blogger Liz Murphy, 2011 DC Walk for Lupus Now! Team Leader

Just one year ago my sister Cathy and I teamed up for the Walk for Lupus Now in Washington, DC. After being diagnosed three and half years ago, Cathy died from complications from Sjogren’s Syndrome and Lupus on January 31, 2011. For those of you who met Cathy, you know she was courageous throughout her disease. She always had a broad smile and a big hug for everyone she met. She doled out lots of both during last year’s Walk despite the fact that she was constrained by a wheelchair and her oxygen tanks. Nothing seemed to get in the way of Cathy living fully and sharing her love for life with others.

I’ve named my new Walk team McCulley’s Miracle because my sister, Cathy McCulley, lives on through the little miracles her life helps to create each day. She is an inspiration to the family she has left behind. Her story was a wake-up call to the FDA as they considered whether to approve the first new drug for lupus in 52 years. And through contributions made in her honor to the Walk, she will continue to help to improve the lives of lupus patients and their families.

Why do I walk? Because there are far too many lupus patients who can’t, and by walking I can keep hope alive for all of them as we increase awareness and shine a light on a disease that truly needs more attention.

Liz Murphy

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Elizabeth “Liz” Murphy is the Chair of Board of Directors of the Lupus Foundation of America, DC/MD/VA.

 

Liz (L) and her sister Cathy (R)

Her walk team McCulley’s Miracle was formed in honor of  Liz’s sister Cathy, who recently lost her battle with Lupus. Help Liz’s team meet (or even exceed) their $10,000 goal. Join her on April 16, 2011 at the 2011 DC Walk for Lupus Now!


Life, Lupus, & Living by Guest Blogger Edie Aultmon, DC Walk for Lupus Now! Team Leader

Lupus, I had never heard of it; until I was diagnosed with it.

Fevers, aching swollen hands and knees, infections, hair loss, pleurisy and more were all symptoms of lupus.  I wrestled with this disease for two years before anyone would figure out that I had Systemic Lupus Erythematosus.  I started off taking three pills a day in 1984, and now I have graduated to 16; unfortunately, the more areas of the body that lupus affects, the more pills you have to take.  I knew that I wanted to be in control of my life; I refused to let lupus control my life.  I started learning everything I could about lupus, and how it works its way all around the body inside and out.

I made up my mind to be my own person, I have always been strong willed and determined to have my own way.  I fought back by exercising more often, getting enough rest, being careful about the foods that I ate and preparing my own food.  There are many things that I had to modify in my life but it has been worth it.

I would like to see lupus patients fighting back to regain control of their lives too.  Life was meant to be lived…to the fullest.  I focused on being positive minded, and being around positive minded people was the key for me.  I try to keep myself busy so I don’t have time to think about having lupus.  I happen to like being in control of my life, and I want to keep it that way.

I have known lupus for a long time now; it has tried many times to hinder my efforts in maintaining a normal life.  I have refused to cooperate and I shall continue to be uncooperative.  I will be walking for lupus on April 16, and there will be many others walking with me spreading lupus awareness everywhere we walk.

Edie Aultmon

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Edie Aultmon is the leader of DC Walk for Lupus Now! Team Non-Stop.Please help support her team goal of raising $2,500 for the April 16th walk.

Edie is also a health fair advocate and can be found teaching people about lupus across the DC metro area. Edie currently works full time as a Project Manager in the EPA Mail Center.

If you would like to hear Edie talk about living with lupus, check her out on the Lupus Foundation of America, DC/MD/VA video Chasing Butterflies.

Butterfly Social – 2nd Annual Team Kickin it 4 Krista Happy Hour on 4/7/11

This year I have been honored to work as the co-chair of the DC Walk for Lupus Now with Krista Blackburn.  Krista’s Team “Kickin it 4 Krista” is a walk Rock-Star.  Her Team has already raised approximately $15,000 for the Lupus Foundation of America DC/MD/VA chapter. But to meet the team goal of raising $20,000 she needs our help!   Katina Rae Stapleton

An invitation from Krista:

Please join us in supporting a great cause at the 2nd Annual Team Kickin it 4 Krista Happy Hour at The Front Page in Arlington, VA with all proceeds benefiting the Lupus Foundation of America DC/MD/VA.  The event is Thursday April 7th from 5-9pm. $5 wristbands at the door will get you the following food and drink specials:
  • $3 off appetizers
  • 1/2 price burgers
  • $4 shooter special
  • $2.75 rail drinks
  • $3 drafts
  • $3.25 glasses of house wine
  • $2 miller light bottles
Be sure to stick around for the raffle which includes Washington Wizards tickets, gift cards to numerous restaurants in the Ballston/Clarendon area, and other great prizes.  DJ Pat Premier http://patpremier.com/ will be keeping the music going and making sure the party doesn’t stop!  Come on out and help support a great cause! See you all on April 7!

 

New Guest Butterflies: Edie Aultmon and Liz Murphy of the LFA-DC/MD/VA

I am very excited to be counting down the last two weeks before the 2011 DC Walk for Lupus Now! on April 16, 2011. As you know Team Butterfly Lessons will be in full effect at the walk. But we are certainly not the only team that will be there to raise lupus awareness and funds for the Lupus Foundation of America, DC/MD/VA chapter.

I am very excited that two fantastic walk team leaders will be guest blogging this week on the Butterfly Lessons blog. Both have an incredible story about how lupus has touched their lives.  On Monday, we will here from Edie Aultmon, of Team Non-Stop about living with lupus and on Wednesday, Liz Murphy of Team McCulley’s Miracle, will be share her story in honor of her sister Cathy, who recently lost her battle with lupus.

This week Butterfly Lessons will also give a shout to Krista Blackburn, my walk co-chair and leader of Team Kickin’ it 4 Krista. Krista’s team is close to raising $15,000 for the walk. I hope the DC metro Butterfly Lessons family will join Krista for her Happy Hour on April 7th in Arlington, VA.

Take care,

Katina Rae Stapleton

 

This One’s For You: 2011 DC Walk for Lupus Now! by Guest Butterfly Penelope Fletcher, president of LFA-DC/MD/VA

I am so pleased to be a ‘guest blogger’!  The first DC Walk for Lupus Now was in April 2007, and we had 500 people walking on the sidewalks, because we weren’t big enough to close the street.

On April 16th, we hope to have 3,000 people walking down Pennsylvania Avenue carrying butterflies and spreading lupus awareness – that’s so exciting to us at the Lupus Foundation of America, DC/MD/VA Chapter.  This is the biggest lupus event that will happen in this area in 2011.  Time and again, people tell me that when they walk, for one day they realize that they are not alone in their fight against lupus – they know that there are other people who understand and who want to find the same answers that they do.  Lupus is often a lonely disease, but not on April 16th in Washington DC!

People who know me know that I often think about my mother who died 6 years ago of complications of her lupus and the toll that the drugs had taken on her body over the decades.  During that first Walk, on a bright sunny beautiful DC spring day, I looked up at a crystal clear sky and thought, “This one’s for you Mom!”  I still have that thought at the start of each Walk, how much she would enjoy seeing all those people who share the same mission.  The difference for this Walk though is that for the 5th Anniversary Walk, I’ll also be thinking of so many other people that I have come to know and care about.  This one is for each of you, because with the money we raise we will be able to provide a year’s worth of education and workshops and services.  We couldn’t do what we do without each person who walks and donates – so truly, this Walk is for each of you who live with this terrible disease, it’s a salute to your courage and your perseverance – thank you!

Penny

Penelope “Penny” Fletcher is the President and CEO of the Lupus Foundation of America, DC/MD/VA chapter (LFA-DC/MD/VA). The chapter’s mission is to  find the causes and cure for lupus and to provide support and services to all people affected by lupus. The LFA-DC/MD/VA provides services in the District of Columbia, Maryland, and Central and Northern Virginia, including offering current information about lupus, education programs, support groups, and personalized help with the questions that arise for those living with lupus and their family and friends. The chapter also support research and promote lupus awareness. To learn more about what the LFA-DC/MD/VA chapter is all about, watch the chapter video: Chasing Butterflies.

For more information, contact: LFA, DC/MD/VA Chapter, 2000 L Street NW – Suite 732, Washington, DC 20036; Phone: 202-349-1167 or  Toll-free in DC, VA, MD, WV: 888-349-1167; Email: info@lupusdmv.org

Penelope C. Fletcher, president of the LFA-DC/MD/VA stretches her Guest Butterfly Wings

I am always on the hunt for new Guest Butterflies! This Monday, I will be posting “This One’s For You,” a great blog post about the 2011 DC Walk for Lupus Now! by Penelope “Penny” Fletcher, the president and CEO of the Lupus Foundation of America, DC/MD/VA chapter.

If you are interested in participating in the one of the 2011 Lupus Foundation of America’s Walk for Lupus Now! Events, check out the their main walk page.

To participate in the 2011 DC Walk for Lupus Now! as part of Team Butterfly Lessons, register on our walk page or contact me by email, twitter, or FB.

Take care,

Katina Rae Stapleton