How I Feel vs. How I Look

One of the biggest challenges we face with lupus is that it’s mostly invisible. Aside from the scars on my face (which most people will not immediately associate with lupus) you don’t know I’m sick until I tell you. With this invisible disease comes challenges; how I look doesn’t always correspond with how I feel. It might seem strange, and I definitely can’t say it works every single time, but looking good and dressing up despite how much pain I’m in has helped me.

On days I feel the worst, days where my muscles ache for no reason, days I’m low on spoons, I try to dress up to balance everything. Sure I don’t always feel like it, but I’ve found that on days when I take a little extra time in the mirror and put on that fierce pick me up lipstick (we all have it) I feel a little brighter. And to be honest, sometimes that’s all I need.

I liken this practice to positive thinking. Be the light that you wish to emit, mentality. It can really get you through the tough days. I won’t pretend that I don’t have days that are giant pity parties but it can always be worse and I try very hard to keep that in perspective.

Lupus might kick my ass on some days but I’ll be damned if I don’t look fabulous regardless. I happen to have lupus, but lupus certainly doesn’t own me.

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This is a recent picture from a trip to Portland last weekend. I love how carefree and happy I am here. ūüėÄ Stay positive my friends!

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.

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.

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