The butterfly has landed

March 13, 2012

As life goes on with Mixed Connective Tissue Disease, you find yourself waiting for symptoms to come on just to tick them off.

“Raynaud’s? Of course I have that. Which joints hurt? Any of them and all of them, depending on the day. It changes. Oh yes, some days I feel like someone has taken a baseball bat to my back – I’m used to it.”

I’ve become quite blase about what it means to be sick all the time and honestly….sometimes I just forget I have it, especially if I’m lucky enough to be feeling pretty good.

But then, ever so quietly, the butterfly lands and there is no hiding some things.

One of the most obvious symptoms of MCTD and lupus for that matter, is the Butterfly Rash.

I’d been keeping an eye out for this one because, from my research, the butterfly rash is meant to be a big, red rash over my cheeks and bridge of my nose.

Despite scattered red dots turning up randomly on my face, they never took the shape of a beautiful, winged creature so I thought it wasn’t that. But a visit to my rheumy revealed that, this is infact the dreaded moth and that the rash shows up how it wants, when it wants.

I’ve always been a rosy gal. I blush ALL THE TIME, over the most ridiculous things. I actually blush when I’m not nervous or embarrassed, just because I’m in a situation where I think someone else might be nervous or embarrassed so I flush.

It’s incredibly frustrating. But what’s even more bizarre now, is that I am going red, without even thinking about thinking about going red. I’ll look in the mirror and WHOA there is that butterfly in all its glory.

So…luckily I’ve had years of experience of hiding the blush. This might involve caking on the foundation, it might involve trying to keep my body temperature much lower than is should be and holding ice-cold drinks against my face – which in turn, turns my fingers white thanks to raynauds.

All I can do is be thankful that, as a woman, I can hide behind make-up and try to not think of the superficial aspects of this disease….when there are so many physical symptoms – that are unseen but so much worse.

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5 Responses to “The butterfly has landed”

  1. Sascha said

    “they never took the shape of a beautiful, winged creature” – this is what I’d be hoping for too! Next time we catch up, we can hang in the air con together and keep things cool 🙂

  2. Bev said

    hey there the princess —- i think the red hue lends a certain glowing look of health and youthfulness, even if it belies the truth that lurks under? well, for me, at my age, my peers all have either leathery creases, crepey crinkles, dried crackly arrangements, gravity challenged sags/bags and suchlike. so, a bit of a rosy glow isn’t such a bad thing by comparison? gotta find the positives…. sigh!! ;o) and i feel positive that you’ll achieve attainment of plenty of positives in your rosy glow ….. :o) xox.

  3. Susana Basanty said

    My butterfly is quite delicate, blotchy, light pink and lacey therefore beautifully hidden under powder and makeup, but it has taken years of shunning the sun to avoid this beautiful creature, which on my face also has not taken the butterfly shape but maybe a flock of tiny baby butterfly dots.

  4. Jodiebodie said

    My rash is a signal that my immune system is struggling and that is the time I need to take things easy. It is infuriating to have people come up to me and say “You’re looking well, you have a bit of colour in your face!” and they seem genuinely pleased for me! Meanwhile I wonder do I really look pale and sickly when my butterfly is not there?? I cannot use make-up because it aggravates my skin even more!

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