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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Let’s Talk about Summer Fun!

Hiding from the Sun
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.

Lupie Day Trips & Style

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I love a nice day trip; it’s nice to get away and explore someplace else. Summertime means more day trips and unfortunately, for me at least, more sun exposure. While planning a wardrobe around work (if you’re at a desk all day) is easy, a day trip usually means you will be walking, exploring, and ultimately spending more time outdoors than an average day during the week.

What does this mean if you’re sun sensitive? You plan ahead. I’ll be the first to admit I never excelled at planning but now that my health depends on it, I make do. Planning means thinking about everything your day will likely include and what that means for your clothing and accessory options. How much sunscreen to pack, what clothes are both cool and breezy but also protect you.

Always check the weather, and try (if possible) to plan your outdoor activities at the earliest and latest times of the day. Activities such as museums, shopping, eating, or shows are the safest bets during peak-sun hours. Once you determine the weather you can begin the process of picking out the appropriate clothing.

Large brim hats, sunglasses, and good walking shoes are a must. The makeup and moisturizer I use also use always contain sunscreen. Currently I’m in love with SUPERGOOP! City Sunscreen Serum with an spf of 30. I’ll talk more about my favorite sunscreens in another post! I’ve tried so many brands. Talk to your Dermatologist to determine what spf suits your needs.

Here is what I stay away from:

  • Tank tops, spaghetti straps, and or midriff baring tops
  • Shorts

Instead, try these options:

  • Maxi dresses with a cardigan or denim jacket
  • Jeans
  • Midi & Maxi skirts
  • Jumpers
  • Khakis

Happy planning!

Credits

Eliza J Scarf Print Woven Maxi Dress $158

H&M Knit Cardigan $12

Zara Jumpsuit $89

DKNYPure Shirtdress $255

Mango Monochrome Check Trousers $59.99

Ralph Lauren Varick Skinny Jean $198

LFA’s Lupus Education Seminar

I received word of an upcoming seminar on Lupus which will be held in Los Angeles, CA on June 28, 2014 by the Lupus Foundation of America. Sadly, being all the way in Baltimore, I unfortunately can’t attend. Please help spread the word; I’ve listed the information for the event below and the link to RSVP. If you have any questions, please contact Laurie Gray of the Lupus Foundation. Space is limited so if you’re interested get your tickets now.

Courtesy of Lupus Foundation of America

 

Our speakers will be Dr. Maureen A. McMahon, Rheumatologist at UCLA Medical Center and Jeanne Melvin from Solutions for Wellness.  Maureen and Jeanne will be speaking on the topics of lupus treatments, living with lupus, and .improving sleep by managing fatigue and pain. In addition there will be a Q&A session. 

The event is free but parking is $6 and carpooling is encouraged. For more information and to RSVP please visit here.

Photo: © 2014 Lupus Foundation of America, Inc.

Cruising with Lupus

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I recently returned from a week-long cruise filled with sleep, food, and more sleep. Here’s an exchange I had with one of the employees on the ship. Enjoy! 🙂

 

Jewel (me) To a twenty-something yr old hostess in the restaurant

Hello! Do you think I could get my water bottle filled up before I leave the ship for my day excursion?

Hostess

Sure, let me get someone for you.

Jewel

Great.

Hostess stares at me with a weird expression

 So were you burned or something?

Jewel paused to quickly determine if I want to give a long or short answer. 

No. I have Lupus, which is an autoimmune disease that can damage the skin.

Hostess

Oh.

She kinda ignored me after that, which is fine but couldn’t she have done so after I received my water? I waited for the mysterious water person to fill up my bottle for about 3 minutes before taking off and having someone at the bar do it. Now, I’ll probably get some backlash from folks but I’m pretty sure Carnival would not have been happy with her had I decided to complain about her service and rude question. But, I saw no real gain in getting her in trouble so I went on with my day. Hopefully she did too. More importantly, hopefully she learned something.

Because I’ve been getting questions like this all my life, the fact that I’m asked does not bother me. I like questions!! I have no issues with helping people understand all that Lupus entails–even though it’s quite subjective, this disease. The Discoid lesions are not something people see so I expect questions. What usually makes me grind my teeth together is the manner in which people ask me. You can ask a genuine question without trying to guess. Perhaps my scars look like I was burned. Okay, I can live with that. But wouldn’t you feel better if just asked me rather than assume?

What do you think? Do you experience similar situations? How do you handle them?

Summer Protection & Lupus

IMG_4957Perhaps the greatest benefit of living in Baltimore is the fact that my doctors are at John Hopkins Hospital, which as you may or may not know, has some of the best doctors in the world specializing in Lupus. Considering I’ve had some pretty pathetic doctors growing up, I’d say this is a major improvement. Go me!

What my team, as I often refer to them as, reminds me of every time I visit is that the sun is not my friend. Well duh, it’s the one thing Lupus has successfully proven to me. Southern California + Jewel = many trips to ER and the ultimate change from Discoid to also include Systemic Lupus. Only me!*

While I’m not afforded the luxury of only thinking about the sun and all its evilness during summer, I do ensure I take extra precautions during the summer months to protect myself.

How? Let me show thee the ways:

  • Sunscreen and I basically become one (just like the Spice Girls’ song)
  • I add a large scarf to my car to drape over any part of my sun-exposed body
  • Buy new hats if necessary (this year it was necessary)
  • Plan my outfits based on how much outdoor activity will take place during the day
  • Do my best to stay the heck out of the sun’s way (which isn’t always easy!)

This list isn’t at all meant as exhaustive but I want to emphasize that when you have any illness or skin condition which by default means you are sun sensitive, it’s a good place to start. I’d be lying if I said that I do all the above everyday but what I can promise you is that I think about the sun and how it interacts with Lupus almost constantly. Even when I’m doing something I know deep down is bad for me, I am aware that it is bad and that I should try harder. Like anything, it’s a process and it takes time, but making certain things habit can definitely help.

*Being that I am not the only person living with Systemic Lupus and probably not Discoid either, this probably isn’t true but I am dramatic. Aren’t we all?

Photo: Isaiah Harris