“The Worst Atrocity You’ve Never Heard Of”

I came across this video tonight and feel compelled to share it. I will warn you that it is graphic, disturbing, and like Kristof suggests, it will haunt you.

But maybe that’s a good thing. Maybe if enough people are disturbed something will change. I have to believe this, because the images and their stories are absolutely heart wrenching.  See for yourself. . .

The Worst Atrocity You’ve Never Heard Of

The Beauty Counter

Makeup is fun to shop for and something that never gets old. I am guilty of spending way too much time in Sephora, Ulta, or even MAC. Recently I picked up a few items at MAC and am horrified by the customer service, or lack thereof, I received.

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Whenever I walk into a makeup store I always have a tinge of hesitation which stems from the fact that regardless of why I’m there the sales associate or makeup artist is usually going to make some assumptions before I open my mouth. Perhaps its human nature but just because you see someone with a scar across their face, or any part of the body, and they walk into a beauty store, does not mean they are looking for a product to hide behind.

Some artists are really nice and can teach me a trick or two, others I want to call a manager on. Either way, the lack of service at the Harbor East MAC store wasn’t enough to deter me from purchasing. I did walk out empty-handed, but the next day drove to a different location to pick up everything I looked at the night before.

Discoid Lupus & Kids

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Children are awesome. They say whatever it is they’re thinking, whether you ask or not, and they’re usually pretty positive overall. So why jade all that positive goodness with talk of chronic illnesses? Because while I may not know everything, I do know that eventually children ask. Simple as that. If you think they won’t, well, then you live in an alternate universe!

All joking aside, it’s something you’re going to have to do at some point so it’s best to be ready. I say this as someone who does not know the meaning of preparation. I typically wing it, because I’ve explained to so many people throughout my life what’s on my face. Hence my blog’s namesake.

When my four-year old niece asked me, I was not ready for how she would react…

We’re laying down on an air mattress because I was able to convince my sister that to let me babysit since I’m never in California. After she discovered the joys of memory foam pillow-top and calmed down a bit we were resting on the heavenly clouds facing each other. I could feel her tiny breath on my face and remember being very sleepy and hoping that if I stopped moving and closed my eyes, she would too. Wrong.

She looked at me and in the most innocent way, asked, “Auntie, what’s that?” while pointing and touching one of my scars. “Aunty has lupus. Lupus is like a cold for the skin. My skin was sick and this is what happened. Now, I have these as reminders, but don’t worry, I am not in any pain.”

This bundle of joy inched even closer to me, and snuggled up. She kissed my face and I stared, dumbfounded. I’ve had cousins tell me, “we think you’re pretty but would be prettier without lupus.” I’m not delusional about how children perceive things. It’s hard to actually put into words the series of mini-actions that took place after I explained to her what lupus is, the best way I thought she could understand. I would be lying if I didn’t say I was surprised, after all these years, after all I’ve been through. The moment we shared was filled with love and understanding. How a four-year old was able to connect with me on a level most adults cannot is beyond my comprehension but I am eternally grateful for her. She’s my sunshine and no disease could ever take that away from me. If anything, I think lupus has actually made us stronger.

Still, while I’m no expert I think if a child asks us a question we should do our best to answer. You might be surprised by how well they handle what you say. It might even make you tear up–like me, cause I’m a huge baby. At some point I’ll have this talk with kids I will hopefully have–I can only hope it goes as smoothly and is as touching as this was.

Happy Monday everyone!

Purple Fever!

Purple has always been a color I’ve loved. It has different meanings depending on the culture. Once when my partner asked years ago why I liked it so much, I couldn’t explain it. I like what I like was probably my answer. He does not like purple because in Poland it’s associated with death. I explained that it’s the color or royalty and grand here–at least in my eyes. No matter the culture, it maintains important to me because it’s the color the Lupus Foundation of America uses to represent Lupus. While I was in Long Beach, I came across the cutest store right on the harbor. The entire store is purple, something I’ve never seen before. I was thrilled when I stumbled upon it. I’ve snapped a few pictures below to share with you.

Next time you see purple, I hope you think of Lupus!

 

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What’s on your face?

302215_2685422014272_1248408401_nWhen I was a child I remember asking my mum whether she had seen anyone in the world who has “my type of Lupus.” I remember her shaking her head and looking quite sad. As I’ve grown older my fascination with the fact that I’ve only come in contact with one other person with the disease has not faded. Since Discoid lesions aren’t exactly something you see everyday, when people meet me for the first time they usually have a series of questions for me–which I am more than happy to address unless they display traits such as diarrhea of the mouth. If you start spewing out nonsense in an attempt to guess what happened to my face, I will not answer. I may roll my eyes and walk off unimpressed. Or, because I’m sometimes an evil little wench, I may lie and feed into whatever story you conjured up (I know it sounds mean, but it’s mostly* harmless). Here are some common questions along with the true answers.

  • Discoid Lupus is NOT contagious. It’s not going to jump off my face and onto yours. Even though some folks act like it, but that’s an entirely separate post.
  • Discoid lesions on my face are never painful and rarely change. Lesions on my scalp have had the tendency to make me cringe.
  • Discoid Lupus is not a disability. Although if someone wanted to send me a check every month because he or she believed it is, I will not stop you. Message me for my full contact information.
  • Discoid Lupus has an arch-enemy. *cue ominous music* Enter Sun. *ominous music fades*
  • Discoid Lupus is pretty permanent. Unlike the butterfly rash that occurs in some people with Systemic Lupus, as far as I’ve experienced, Discoid Lesions are permanent. If not, someone or some Doctor has some serious explaining to do.

If you’re still itching to find out more about the different forms of Lupus, including Discoid, visit here.

*While it’s very rare I do this these days, I would be lying if I didn’t say the thought usually crosses my mind for maybe a split second before I decide to “be the bigger person.” Too bad there’s less gratification in doing so. 😉