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.

 

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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 

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. 😉