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.

27th Annual Maryland Lupus Summit

The biggest lupus event of the year is here! On Saturday, September 13, 2014, the Lupus Foundation will present the 27th annual Lupus Summit for Maryland, in Baltimore. This event features a day of lectures, activities, and information for lupus patients and their families. The summit is free but registration is required; click here for details. The renowned Dr. Michelle Petri will be speaking first (at 9:00 am) and I would encourage anyone in Maryland interested in this event not to miss her talk on treatments for lupus.

For those who do not know, Dr. Petri is one of the leading lupus rheumatologists in the world. She is a Professor of Medicine at Johns Hopkins University School of Medicine. She attended Harvard University for Medical School and currently serves as the Director of Johns Hopkins Lupus Center. At the Lupus Center she leads the research to better understand the relationship between systemic lupus erythematosus and morbidity and mortality. She published a study which linked vitamin D deficiency to lupus  patients which effectively determined all lupus patients must take vitamin D supplements, usually for the rest of their life. For more information on this study, click here.

In addition to the likes of Dr. Petri, the event will also host a series of other sessions which include but aren’t limited to: lupus and the skin, lupus and men, lifestyle and lupus, and tai chi, to name a few. Lunch will also be served but you need to pre-order when you register. The cost for the box lunch is $10.00. The deadline to order the box lunch is September 10, 2014. Pre-order the lunch here. Alternatively, you can  bring a bagged lunch; however, buying lunch at the event is not an option.

Registration is from 8:00-8:30 am

Summit is from 9:00 – 3:o0 pm

I hope to see you there!

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!

Summer Blues

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You know what my favorite thing about summer is? The almost daily occurrence of scattered thunderstorms. I find the roar of thunder chilling. The flash of lightning is beautiful. Most of all, the dark skies allow me to feel less guilty about being outside. I hate that I get it, but I am unable to turn it off. Bright skies? Even fully slathered with sunblock and protective clothing I feel guilty. How can you enjoy life if you’re constantly thinking about what not to do?

While my doctors are amazing and I’m sure they know what they’re talking about, sometimes when one tells me to hide indoors for the duration of my life I stare un-moving for what seems like an eternity. Why would I waste my life away indoors? Everyone will die at some point right? I’d rather live everyday like it’s my last. Inhale the freshly cleaned air while I can. Stare out my rain streaked window while the Gods throw rods at the earth. This is what I live for and this is what I will fight to enjoy. Be it indoors or out.

Don’t let anyone tell you what you can’t have. Sometimes, you just gotta grab life by the horns. Trust me, Lupus can wait.

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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Unexpected Trips

 

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Over the weekend my family lost our wonderful and amazing grandmother, mother, and mentor. She was an extraordinary woman and represented a strength that often transformed us. While we miss her dearly, we are grateful she is no longer struggling as the road to the end riddled with illness, complications, and overall it was something you wouldn’t wish on anyone.

I will be flying into Los Angeles this week and need to write the eulogy and obituary. It’s the middle of June, summer is around the corner and it’s  blazing (but not humid, thank GOD) in SoCal. This leaves me wondering, what am I going to wear!?

Like my grandma, I’m stubborn. Lupus, pffssh! If I ignore you, you’ll go away, right? Sadly, this inability to recognize what could potentially kill me, is a pretty stupid act of rebellion.  But I did it, for a while at least. A chronic disease isn’t something you can ignore, even if you try, nor should it be. It seems really vain but what I wear, is the first line of defense (well, maybe second after my medication) to prevent Lupus flares. Plus, ignoring her own chronic illness, diabetes, is essentially what my grandmother did and in the end…I don’t think even she would want me to ignore Lupus.

Since I have little time to prepare and this trip is so unexpected, I will mostly be wearing my summer staple of maxi dresses, denim jackets, large brimmed hats, and cardigans and light sweaters to keep my arms covered. Normally, a trip like this would leave me giddy at the thought of packing, yoga on the beach, and even hiking, but given the circumstances I’m hoping I can make it through the coming days at work without breaking down. Even when you know something is inevitable, it still hurts as much as an unexpected punch in the stomach.

 

Let’s Talk about Summer Fun!

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Hiding from the sun in Port Lucaya

Now that it’s officially summer the list of outdoor events lined up for the coming weekends is growing by the day, at least here in Baltimore. After a winter like this past one it’s nice to finally walk outside without a thousand layers of clothing. When I look around and see women in their short shorts and summer dresses I gotta admit, I get a tad bit jealous. I look at my milk chocolate skin and think, you are designed for this! Your skin can take it. And it’s true, I don’t burn. My skin I can take it, but Lupus can’t. I want to wear some daisy dukes and not give a %$@#, but I have to care. Doesn’t make it suck any less but it could be worse.

This past Saturday I went to a festival in Annapolis which was really fun. Wine and art, what’s not to love? I wore a long maxi dress that was wasn’t really form-fitting so it kept me somewhat cool. I then tied a decorative scarf across the cleavage area to reduce the amount of skin I could potentially show. I topped it off with some funky wedges, a denim jacket, and a large brimmed hat. This look is basically my summer uniform. Maxi dresses which hit the floor cover practically every inch of your body and what isn’t covered you can fix with a light jacket or cardigan. It may have been a bit too warm for the denim but I managed to make it the entire day without taking it off–which, believe it or not, made me really happy!

While in line for one of the tastings I looked up at the sky and was like “hmm, it’s kinda hot!” There was a woman next to us and she looked at me as if to say “just take off the jacket,” so I responded quite honestly (to her imaginary question, mind you). “I would take off my jacket but I have Lupus and the sun = no bueno for me.” She quickly explained how she knew all about the sun as her mom has Lupus and literally passes out whenever she’s in the sun. What the what! We chatted for a bit and turns out her mom’s sun blackouts is the only reason a Lupus diagnosis exists. Crazy, huh?!

I guess in retrospect, having to wear my jacket wasn’t nearly as bad as it could have been. At least I could be outside enjoying the event and my friends. Sometimes you just have to count your blessings.

P.S. Despite my love of what I wore, I realized (after the fact) that I only took one group pic and don’t have any real proof of the aforementioned outfit. The picture above is the dress I wore but taken a week or so earlier while on vacation. I will need to capture this lovely sun protecting outfit soon for you all. If, that is, you want to see it. haha.