Category Archives: Uncategorized

A Mother’s Journey of Living with A Teenager with Lupus by Guest Butterfly Marier Stapleton (My mom!)

In honor of all the mothers of chronically ill children & teens. Happy Mothers Day!

Butterfly Lessons

One very cold winter morning, my fourteen-year old daughter had a seizure and was taken to the emergency room.  Numerous tests were administered.  The doctors that morning did not find anything physically wrong with my daughter based on the results of the tests.

Hours later, I took her to our general practitioner who also ran a series of tests.  All of the tests came back negative.  Our  general practitioner made several referrals to specialists..  Their tests came back negative also.  Our general practitioner was perplexed and decided to refer her to a psychiatrist.

I recall us sitting in the psychiatrist’s office being asked a series of questions.  After several hours of interviewing my daughter and me, he concluded that the illness was probably physical and not emotional.  On our drive home my daughter looked up at me with a smile and said to me that the psychiatrist needed counseling, not…

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T25: Day 1 Butterfly Style

One of the hardest things for me to deal with over the years is my yo-yo relationship with physical fitness. I have had periods when I build up my stamina and can walk 2 miles a day! But I have also had flares when I could barely walk from the store to my handicapped parking spot. And the shift between the two (active vs. barely walking) can be abrupt, sometimes shifting back-forth in the same day, or slow with months of activity followed by months of chronic fatigue.

Over the past year I have been trying to build up my stamina so that flares won’t be as bad. I started slow – transitioning from many months of PT to water aerobics and gentle yoga.

But tonight I jumped into the deep end & decided to try T25.  On the surface this idea seemed a tad crazy. Just about every time I try an exercise program that is not aquatic, I injure myself. But this time seemed different. I spent so much time in PT that I learned what I can & can’t and how to modify exercises properly.

So tonight I did my first T25 workout. I used the modified T25 exercises as my guide and then modifying them even further when necessary. The key was to keep moving for the entire 25 minutes. When they did moves that were too hard or might trigger a prior injury I just walked in place (I learned that trick from “Walk Away the Pounds” years ago). I estimate that out of the 25 minutes, I walked 10 & did 15 minutes of the modified exercises.

That’s fabulous! I hope I still feel that way in the morning!

Katina

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Man Loses 70lbs So He Can Donate Kidney To Wife

A Lupus Love Story from BlackDoctor.org

Avoid the Sun and Listen to Your Mother: A lupus cautionary tale (#HAWMC 17)

Butterfly Lessons

Today’s HAWMC prompt is dear to my heart because I have learned many, many Butterfly Lessons the hard way.

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

My favorite hard-headed story is about the sunbathing. Probably anyone who has ever heard of lupus knows that one of the illness’ distinguishing characteristics is sun sensitivity. To sum it up in a catchy phrase:

“The Sun is not my friend.”

I am pretty good at minimizing sun exposure, but must admit that I still love to travel to sunny places. I have gone to the Caribbean several times and even went to Hawaii and Tulum, Mexico (which is crazy hot).

Each trip I managed by keeping out of the sun during the heat of the day, always wearing a hat and sunscreen, and become best friends with beach umbrellas. The trips…

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Butterflylessons.com is Back!

Hi everyone, it is super embarrassing how long it has been since I have posted anything to my lupus blog (so long, in fact, that I let my domain name expire).

What’s up with me? As always, I have had some health challenges, but I also have been blessed with a job that accommodates my condition and a loving, supportive family. Now that I am back in the blog-o-sphere, I plan to share highlights (and low-lights) from my day-to-day life in the hopes that my story will help others with lupus or other chronic health conditions.

It’s late, so I am turning in. A good night’s sleep is key to living a fabulous life with lupus.

Night,

Katina

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Butterfly Selfie – Have hat will travel – Israel beach #lupus #fibro

30 Posts in 30 Days: Looking Back on the Health Activist Writer’s Month Challenge

The final prompt for the Health Activist Writer’s Month Challenge asks us to recap our experiences blogging about our health focus for the past 30 days. I had an absolute blast. Check out the photo-essay below on my experiences blogging about lupus for #HAWMC 2012.

I finished! I wrote 30 posts in 30 days, though one was a tad late.

#HAWMC increased readership of Butterfly Lessons: Living a Fabulous Life with Lupus. In February and March, the blog received about 600 visits each month, but in April, Butterflylessons.com received app. 1,500 visits.

I was going to skip writing the #HAWMC post on the 19th, but changed my mind around 11:30 pm. By the time I posted the blog, it was already the 20th. That is why the 19th looks so sad on this calendar of my posts.

Most readers of ButterflyLessons.com are located in the United States.

According to Klout, Butterfly Lessons is a Socializer! During #HAWMC, I enjoyed "meeting" other health activists on Twitter and sharing my story with @Butterflylesson & @KRSProf followers.

I received great feedback from readers.

I received blogger love from other members of the #HAWMC family. This passage is from Rhiann, the blogger behind "My Brain Lesion and Me" - http://brainlesionandme.wordpress.com/. Reading her great #HAWMC posts reminded me that even though invisible illnesses differ, we all face many similar challenges.

The 2012 #HAWMC challenge may be over, but my lupus awareness journey continues. During May 2012, I will celebrate Lupus Awareness Month by continuing to blog and tweet about how to live a fabulous life with lupus.

Take care and stay fabulous,

Katina Rae Stapleton

Counting my high school blessings

This weekend is my 20 year high school reunion and I feel abundantly blessed. I was diagnosed with lupus my freshman year and remember being incredibly scared. I had no idea what kind of future I was going to have. Even though high school wasn’t easy, I thrived with the support of family, friends, and my teachers and school administration.

When my schedule was too stressful, the school changed it. When I needed a nap during lunch time, the school nurse arranged for that too. When I needed someone to carry my books, one of my male friends would quietly pick them up and drop them off at my class without making a big deal out of it.  When my books were too heavy to carry home, the school provided a duplicate set for me.

When I was in pain and had a bad attitude, my friends forgave me and rallied to cheer me up. Even though I cancelled most of the time when they invited me to hang out, my friends understood and kept inviting me anyway.

So despite the fact that having lupus as a teenager was very, very, hard, my school and classmates made it bearable.

So to the Eleanor Roosevelt High School Class of 1991, I give you my thanks and big hug. I look forward to catching up with you soon.

Take care,

Katina Rae Stapleton

Butterfly Lessons Logistics for 2011 Walk for Lupus Now!

I am so excited that Team Butterfly Lessons has 11 official walkers registered online and several more that I expect to join us on the day of the walk. It is going to be crazy packed at the walk with over 1,500 people registered. How may you ask will the Butterfly Lessons Team members find each other ?!?

The Basics:

  • We will meet at the registration area for the walk at 8:30 am (the walk starts at 9:30) on Saturday, April 16, 2011 – Rain or Shine: Pennsylvania Avenue, N.W., Washington, DC between 13th and 12th St. N.W. – Next to Freedom Plaza.
  • When you arrive, go to the appropriate registration table to check-in and receive your paper butterfly (and t-shirt if you raised more than $100). If you have not pre-registered, please fill out the registration form, noting that you are part of Team Butterfly Lessons. If you have any money to turn in, do so at this time.
  • Once you have registered, come find the team. The area is going to be super crowded with people, most of whom will be carrying multi-colored paper butterflies and/or wearing purple shirts.

    Look for someone holding this butterfly on a skinny pole!

    One of the team leaders for Butterfly Lessons will be carrying this lovely butterfly to help you find us. If that doesn’t work, call me on my cell phone (email me at katina@katinaraestapleton.com for my # in advance).

  • The Walk is 5K or 3.1 miles. No one is required to walk the entire way, so do not push yourself. Since the Walk starts and ends at 1200 Pennsylvania Ave, you can turn around if you get tired. Water will provided along the walk route.

How to Get There:

Here are the walk-day travel instructions from the LFA-DMV:

Metro opens at 7am on the weekends, but there will be delays due to track maintenance, particularly on the Red, Blue and Orange lines. The Trip Planner on Metro’s Web site will not reflect the impact of work on its schedules. Customers should build an extra 40 minutes into their travel plans. For more information see WMATA’s press release.

Nearest Metro stops:

  • Blue/Orange line: Federal Center (Ronald Reagan building- 12th St near Pennsylvania)
  • Red: Metro Center (11th & F, 12th & G)
  • Green/Yellow: Navy Memorial/Archives (7th and Pennsylvania)
  • The LFA-DMV doesn’t endorse any parking garage, but here is a list of garages that will be open for the walk.
  1. National Parking – 1220 E Street, NW
  2. PMI – 1111 Pennsylvania Ave
  3. Colonial Parking – 700 11th St. NW (11th & G St.) (Near Marriott Hotel)
  4. Quick Park Parking – 1301 G St. NW (Next to Starbucks)

See you there. Email, Tweet, or FB me if you have any questions before the walk. Call me on my cell on the day of the walk.

Thanks to all the walkers!

Katina Rae Stapleton

The Awesomeness of Doing Laundry

I’m Awesome” posted one of my friends on Facebook. Had she cured cancer? No. Saved the world through micro-loans? No. Become as rich and famous as Oprah? No. The rest of her message read: “I’ve picked up the living room and put a load of wash in the machine.”

To those blessed not to have health issues, doing the laundry may not seem like a big deal. But to someone with a chronic health issue like lupus that causes pain and exhaustion, simple household chores can be as daunting as climbing a mountain.

Every since I was diagnosed with lupus, I have had a hate-hate relationship with chores. When I was a teenager, it took me forever to wash the dishes because I would wash a couple, go sit down, wash a few more, then sit down again. My room often looked like “hot mess” because I would take things out of my closet to organize them and then be too tired to put them back. If my parents weren’t very patient with me, I would have been grounded forever. Instead, they encouraged me to do chores when I could and then left me alone when I wasn’t able. The most important thing they taught me was to ask for help. Over the years, I have followed their advice and hired people to do all sorts of chores when I was out of energy— everything from shoveling snow to grocery shopping and laundry service.

Flashing forward to fall 2010, I found myself with stacks of dirty laundry in my apartment and zero energy to do anything about them. My mom came by one day, saw the situation and not-so-gently asked: “Katina – do you plan on ever washing those clothes?

I can’t remember what I actually said, but it probably sounded something like: “No, I plan to keep buying new clothes so that I don’t have to carry the laundry basket up two flights of stairs. Do I look like I have enough energy or arm strength to do laundry? The pain! The pain! Don’t you remember why I am in physical therapy! If only I had a laundry service like I did in New York, everything would be so much better . . . .

A few days later, she made a suggestion that I couldn’t argue with. If I simply couldn’t do the laundry, then I needed to hire someone else to do them for me. So I did. For the last few months, I have paid to have my laundry washed once per week. I am blogging about it because I am not at all embarrassed. Having laundry service is awesome!

To put this in perspective, think about what it might feel like if someone hit your arm with a bat. Then think of picking up a heavy laundry basket. Then consider how much better your arm would feel if someone else was picking up the heavy laundry basket instead of you. That’s right, it would feel awesome!

When I told another relative that I planned to do try to do a load of laundry last night, she laughed at me because she had heard the bat analogy. She asked me whether or not I planned to take my laundry to the machine one piece at a time. I laughed back, because she wasn’t very far from the truth. When I got off the phone, I loaded a very tiny load of clothes into a basket and made my way to the machine. My mission was successful and I now have a clean load of clothes that I felt well enough to wash for myself. So I am proud to say, “I did my laundry and I am awesome!”

The Butterfly Lesson? Get help when you need it. Rejoice when you don’t need the help.

Take care,

Katina R. Stapleton