Category Archives: Fibromyalgia

My Skin Burns: A Third Person Lupus & Fibromyalgia Story (#HAWMC 25)

Katina, founder of Butterflylessons.com has had lupus for over twenty years. When she saw today’s HAWMC prompt to blog in the third person, she knew she wanted to tell a story but couldn’t figure out which one. She finally decided to tell a cautionary tale about having lupus-related skin problems without the trademark butterfly rash:

Katina has gone to the same lupus specialist since she was 14. But for a long time she lived far away from DC and saw a different set of doctors closer to her new home.

One day Katina noticed that her skin was irritated. It looked fine, with not a blemish or rash in sight, but felt kind of “burny” like she was standing a bit too close to a fireplace. It started happening on her face, then the feeling appeared on her arms, until eventually she would have “painful burning flashes” on different parts of her body. Her doctors couldn’t find anything wrong (and they ran tests of all sorts) and had Katina eliminate everything they could think of to stop the burning. She began washing her clothes in sensitive skin detergent (and double rinsed). She switched to sensitive skin soap, drank massive amounts of water, wore only cotton, tried special creams, etc.

But absolutely nothing helped.

Finally, one of Katina’s doctors got frustrated with her and suggested she see a therapist. Katina was very offended and never went to see that doctor again.

Why? Katina’s very own mother was a counselor and Katina thought that counseling was a great idea for people with lupus who are anxious or depressed. But Katina wasn’t anxious or depressed, she was in pain. How was a therapist going to fix Katina’s painful, burning skin?

The Butterfly Lesson in this story is that this doctor thought Katina’s pain was all in her head just because the doctor couldn’t find an obvious cause or solution. That really upset Katina, so she said adios to the doubting-doctor.  But she didn’t give up on the medical profession. Instead, Katina found a great new doctor who specialized in treating the skin. This dermatologist worked with Katina until the burning eventually stopped. It turned out that the dermatologist was not at all surprised that Katina’s skin burned since Katina had lupus (hello!) and fibromyalgia, which apparently also can present as painful burning skin.

“Central sensitization that is associated with fibromyalgia may be the reason this happens according to some experts. It can present differently for people, sometimes being set off by an allergic response, or tight clothing, or banging into something. Suddenly the skin hurts to touch and the most important thing in the world is to get the instrument that caused the pain removed from the scene. Stripping off clothing that causes discomfort and pain is just one of the reactions a FMS person may have.” Skin Problems by Fibromyalgia-symptoms.org

That incident happened about 10 years ago & Katina still sometimes has burny-skin flares.  Through painful trial and error, Katina has discovered that the burning can be triggered by one or more of the following: the summer (sun exposure), chlorinated pools & hot tubs, non-leather shoes, sequins (really) and synthetic hair. But like before, sometimes Katina’s skin will burn for no apparent reason at all. Such is live in lupus/fibromyalgia land.

Love the Skin You are In (Even if it Burns),

Katina Rae Stapleton

P.S. This blog post was written by Katina Rae Stapleton. While Katina has had lupus and fibromyalgia for over 20 years, she is not a medical professional. If you have any questions about lupus or fibromyalgia, including but not limited to diagnosis, treatment, and living with the disease, you should contact a medical professional.

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Dinner for Five (#HAWMC 19)

Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.
Orison Swett Marden

Thursday’s HAWMC prompt was:

Who are 5 people you’d love to have dinner with (living or deceased) and why?

My five are:

  • Rosalind Joffe, author of Women, Work, and Autoimmune Disease for inspiring women with chronic illnesses to stay in the workforce.
  • Dolly Parton, my favorite country singer of all time and icon of fabulousness.
  • Orison Swett Marden, motivational writer and founder of Success magazine for his sage advice on perseverance in the face of struggle.
  • Laura Hillenbrand, chronic fatigue syndrome survivor who managed to write the international bestseller Seabiscuit despite being homebound.
  • Salt-N-Pepa (who I am counting as 1), my favorite female rappers for inspiring me to tell my story.

Who would you invite to dinner and why?

Katina Rae Stapleton

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.

Am I too invisible for accessible seating?

The Backstory:

Last year I wrote a blog post called “I need a do-over” about the perils I face when I have to stand on the commuter train all the way to work. My commuter train has double-decker cars with about ten seats on each end that don’t require going up or down stairs. The “no-stairs” seating area can be used by anyone, but is supposed to be prioritized for  people with special needs. 

The Wheelchair/Cane Guy Incident:

Sometimes my legs feel perfectly fine and I can stand all the way into DC, about a 35 minute ride.* But if I am having a lupus or fibromyalgia flare, my legs sometimes feel like someone has hit them with a car. On those days I really need a seat.

One day last week I got on the train with my legs feeling a hot mess. So I took my own advice and sat in the first available seat, which happened to be in the accessible seating area. I rode the train happily until we reached the second-to-last stop where someone in a wheelchair was being helped on the train by the conductor.

The person seated next to me got up so that the wheelchair could be moved into our two-seat row, but nobody else moved an inch. I didn’t move either, because I was waiting to see where the conductor wanted to place the chair. It could go in the 4-person section I was sitting in or the 4-person section across the aisle.

Right across from the aisle from me (also in a wheelchair accessible seat) was a guy who walks with a cane. “Cane Guy” started waving at me to get up and move even though 1) the wheelchair could have just as easily replaced Cane Guy’s seat as mine, and 2) the woman in the wheelchair was still being helped onto the train. Cane Guy just kept waving at me and I started to feel uncomfortable, like I had done something wrong. Finally, I did something I immediately regretted. Instead of holding my ground, I got up, walked up the flight of stairs, and found another seat. 

It was very surreal for me because I give up my seat all the time for people with wheelchairs when I am feeling well. But that day my leg hurt and I felt a wave of disgruntlement, especially towards Cane Guy. As I limped up the stairs, I thought to myself: “My leg hurts! Bad! Why did I have to move? I have just as much of a right to sit on the ground floor as you do, Cane Guy! Does your leg hurt as much as mine?!?.”

I got even more upset when I realized that not only was Cane Guy still sitting in the accessible seating area, so were four other people who could have moved instead of me. 

I have never felt more invisibly ill than I did at that moment.

To Cane Guy and my other seatmates, I probably looked like a perfectly healthy person who should have been willing to give up her seat without question. After all, I did not have a health challenge that they could easily see.

At the moment I gave up my seat, I couldn’t think of what else to do besides refuse to move and create a scene.After all, the woman’s wheelchair did have to go somewhere, and my seat was one of the two best options (Cane Guy’s seat was the other).

What was I supposed to say? “Excuse me, I may look healthy (and fabulous), but I am really an invisibly ill person who is having trouble standing and navigating stairs.  Can one of you move instead?” Well, actually, that is what I should have said, but I didn’t think of it until I had already moved and was mad, mad, mad about it.

As I stewed in my seat, I decided while it was too late to say something to Cane Guy, it wasn’t too late to say something to the conductor. So when I got off the train, I waited to speak to the conductor and told her I had felt pressured by Cane Guy to give up the seat I really needed. She was actually quite kind, but noted that there was no visible signal (like a wheelchair or a cane) to indicate that I also needed the accessible seating. While I agreed with her in principle, I wondered if this could have all been avoided if there was some way that I could indicate being “physically challenged” without having to tell my entire health history on a public train. While I love blogging about living with Lupus, I have no desire to tell my fellow commuters about it just for an accessible seat!

I finally came up with a future option that strikes the balance of providing information without over-sharing. If someone asks me to move for a wheelchair and I am not up to it that day, I will simply say: “Can someone on this level switch seats with me? I don’t mind moving for the wheelchair, but because I have a disability I also need a ground-level seat.”

Has something like this ever happened to you? What did you do? What do you think I should do in the future if I face a “wheelchair vs. my seat” dilemma?

Take Care,

Katina Rae Stapleton

* The irony is that Lupus and Fibromyalgia are so fickle that sometimes my legs are so painful that I can barely walk and other times my legs are strong enough for me to dance the night away. By this weekend my flare had passed and I was able to go to a party and dance for much of the night. Go figure . . . .

Hot off the Press! Butterfly Lessons Founder is in the Washington Informer!

I’ve had such a great time as the Co-Chair of the 2011 DC Walk for Lupus Now! One of my most important goals was to raise awareness of the disease in the DC Metro area.  Today I am featured in the Washington Informer on page 17.  Click on the picture below to read the advertorial.  I think it’s fabulous (if I do say so myself)!

Katina Rae Stapleton

"Living with Lupus", The Washington Informer, April 14-20,2011 Edition, pg. 17

 

Tips to Organize When You Suffer from Fatigue-Causing Ailments by Guest Butterfly Wendy Taddeucci

Fibromyalgia, chronic fatigue, lupus and arthritis – limit sufferers from many activities.  However, de-cluttering and organizing does not have to be one of them.  I will share some strategies on how to work with your ailments so that you can de-clutter and get organized.

Space.  You need more of it and de-cluttering, organizing and maintaining your space are imperative to your health and well being.

  1. Work around your best times – when you have the most energy and are functioning at your highest.
  2. You may suffer from depression.  Work with your health care provider to get the assistance you need.  In the same regard, however, “Visual clutter = mental clutter”, Peter Walsh, an organizer who has written many books and has appeared on Oprah and as the Host of Clean Sweep said this.  When you have clutter around you, it weighs you down – emotionally and physically.  Clearing the clutter may help with depression.  I have witnessed clients moods change drastically once the space we have been working on is cleared and organized.  They often tell me that it’s like a weight being lifted off their shoulders.
  3. Set a timer and only work a short amount of time – whether it’s 15 minutes or up to one hour.  Rest.  If you feel up to continuing, set the timer again.  Be sure not to overdo it.  Sometimes when I work with clients, they get an organizing high and continue working after I leave – and are then exhausted and neglect the space we were working on because they feel overwhelmed.
  4. Work on one space at a time and completely finish it.  Then you can move on to the next space.  Give yourself permission to take as much time as you need.
  5. Work with a professional – cleaning service, household handyman – professional organizer.   To learn more about how a professional organizer can help you or would like to connect with a professional organizer in your area, visit www.napo.net and enter your zip code.  You will find a list of organizers in your area.
  6. Work with a non-judgmental, supportive friend or family member.

Once your space is de-cluttered and organized you will be amazed at how it makes you feel – more energy, hopeful and happy.

___________________

Wendy is an organizational and productivity consultant with Simply Organized, LLC where she is the owner and operator. Since the launch of Simply Organized, LLC in October of 2005 Wendy and her team have worked with clients to control the clutter and set up systems to save time and money. Wendy’s goal with her clients is to have them, “know what they have and where to find it.”

Wendy is an active member of NAPO (National Association of Professional Organizers) and is a trained provider for NAPO in the Schools. Wendy is also a member of the NSGCD (National Study Group on Chronic Disorganization). Wendy has earned her Level II CD Specialist Certificate as well as her Certificate of Study in Chronic Disorganization.

Wendy has been featured on A & E’s Hoarders as well as WNDU-Channel 16 news and in print. You can learn more about Wendy by visiting www.putclutterinitsplace.com or following @OrganizerWendy on Twitter.