Portraits of the Butterfly

I never knew what The Butterfly rash was, until I was diagnosed with lupus last year. In some individuals, lupus leaves an extremely distinguishing (sunburn-like) rash across one’s nose and cheeks…a trademark of inflammation and skin sensitivity, exacerbated by sunlight, florescent light, heat, fatigue, and/or (ironically) emotions. I’ve always had an awesome ability to blush… and this would be the reason why.

Well that, and I tend to laugh pretty easily – which also causes me to blush. There you have it.

Until my own diagnosis last August, I had no clue why parts of my face were consistently red. No amounts of sunscreen, cover-ups, or my personal favorite – zinc oxide – made a difference. And I was oftentimes on the receiving end of people commenting on my bright red nose – earned (they assumed) through some lovely afternoon spent in the sun’s rays.

“You look like you had a little sun last weekend! Wow, you must have been outside for quite a while!”

It was easier to nod and agree, instead of trying to explain myself. I never felt the comments were malicious – well, at least not in my 20’s. Kids are just mean, and I know we’ve ALL had bad experiences growing up.

Red cheeks or not.

I was still embarrassed though, and I was especially self-conscious during those vulnerable teen-age years. (Then again – who isn’t?) I became well adept at wielding a powder brush and skin concealer. Growing thick skin and confidence helped as well, but that didn’t come until I was well into my 20s.

And honestly… For YEARS, I thought I was at fault…. That I was doing something wrong and my inability to practice proper sun protection was making my skin turn red.

Oh well.

Now I look at myself – and I’m OK with my Butterfly Rash. Not happy – but okay. And my relief comes from my understanding of why my body does this… It’s NOT my fault, I’m NOT doing anything wrong, its simply part of how my skin deals with lupus.

I’m still aware of it (always), and do my best to conceal and blend my skin…. But sometimes, in spite of my best efforts, I still feel like I have a butterfly etched across my face….So- the rest of the world sees me as one way, sometimes I feel especially sensitive.

To Everyone else, I look like this:

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Taking a break while hiking Coyote Peak, ABDSP

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Getting ready to take the plunge at Cedar Creek Falls with friends.

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These girls make being a Gunfighter Gal AWESOME.

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I LOVE USGS Markers! Agua Tibia Mountain, Cleveland National Forest.

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Me and N. - enjoying a Santa Barbara sunset

But more often than not, I feel like this:

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March 2011 - enjoying the view near the top

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December 2010. The water was C-O-L-D! But we didn't get eaten.

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December 2010, Gunfighter Annual Ornament Exchange.

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January 2011 - I found 2 out of the 3 markers at the top.

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December 2010 - watching a beautiful sunset with my love.

This just a part of who I am – the Butterfly will always be with me. There’s beauty in everything – of that I am convinced. Red nose, cheeks and all.

One more butterfly picture – from a different perspective though. Just because… sometimes my violin feels like an extension of my soul – and more often than not, I can express myself best through it’s voice.

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~You see some pretty amazing things when you look in a different way~

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10 thoughts on “Portraits of the Butterfly

  1. This post reminds me of how beautiful you are inside and out. Wish I lived on the west coast….would love to come and say hi. 🙂

  2. I love butterflies and every time I see one I smile. Now I’ll smile and think of you 🙂

    It’s always nice to be able to put a why to things your body does. It doesn’t necessarily make it easier to deal with, but easier to accept that you have to deal with it.

    BTW- I have a date with a hottie marine this weekend.

    xoxoxo

  3. Soul and Skin and Voice
    Come, come, Marit’s Butterfly
    Play more beautifully

    You have made me smile and cry at the same time.

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