Tag Archives: Hawaii

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

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 have gone well though I sometimes get sick towards the end.

For me, sun exposure is kind of like Russian roulette, because I don’t get sick every time (but when I do get sick, it is very, very, bad).  For example:

•    I took a trip to Miami and basically only went from the airport to my hotel.  I was curled up in the bed with stomach pains for 2 days.
•    I went to the Epcot Center and waited in line to get into the park for about 15 minutes. I only made it about 100 hard yards into the park before I was overwhelmed by pain. I had to return to the hotel and stayed in bed for about 2 days. (I am kind of sad that I never actually got to see Epcot and am trying again this summer. Maybe I can get a Drs. note to bypass the line?)
•    I went to Myrtle Beach, South Carolina and walked from the car to a shopping center and had a flare. I was sick the whole rest of the trip.

In all three cases above, my sun exposure was minimal, but the pain was maximal. It hardly seems fair. But one family trip I took in graduate school ended badly when I completely ignored my common-lupus-sense and ignored my mother’s sage advice (recreated below) . . .

Mom: Katina, do you think you should be in the outdoor pool so long in a swimsuit? You know the sun makes you sick.

Katina: Why are you such a kill-joy? Can’t you see I am enjoying myself? Can’t you let a sista hang out with her cousins in peace?

Mom: Ok. It’s your funeral.

On this trip, I didn’t get sick right away. I was lulled into thinking that all my pool-side sunbathing would have no negative consequences. But I was completely wrong. When I went back home, I had a “fatigue” flare and could not get out of bed for an entire week.

Katina: Mom! I’m sooooooo sick. And I live alone. Why, Why, Why do I feel so bad?!?!

Mom: I told you so.

The Butterfly Lesson: Avoid the sun and listen to your mother.

Take care,

Katina Rae Stapleton

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Have Lupus, Will Travel (HAWMC #5)

Today’s HAWMC prompt was: “Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When I explored Flickr, I spotted this lovely (copyrighted) picture by Rob Dickenson of Hawea. It reminded me very much of my own travels around the world. When I first was diagnosed with lupus as a teen, I was terribly afraid that I wouldn’t be able to travel or that I would travel, but get sick on the road. Over the years I have had a chance to travel several times to the Caribbean, to Europe and across the United States (even Hawaii and Alaska). I came up with several rules that help make traveling easier for me:

  1. I make sure I have all my medicine, including meds I take regularly and “emergency” meds that I might need if I have a flare.
  2. I plan for proper rest. On my last cruise I went to be around 9 pm every night (crazy early!) because that is what I needed.
  3. I pack things that I can use to battle muscle and joint pain. I always, always, have some sort of heating pad in my luggage.
  4. I always respect the sun. Even though I frequently go to very sunny places, I try not to tempt fate too much. I pack my trusty hat collection, sunscreen and shades and try not to linger in the sun during the heat of the day.
  5. I make sure I have at least one day after the trip to rest before returning to work. This allows me to unwind from the trip (flying sometimes makes me sick) and gear up for the 9-to-5.

If you have lupus and love to travel, what do you do to make your trips go smoothly?

Katina Rae Stapleton