Summer Recap

August 25, 2015August 29, 2015 ~ Jewel ~ Leave a comment

My least favorite season is sadly coming to an end. I know what you’re thinking, how can you dislike the season and yet be saddened by its departure? Easy. While I hate summer because of all the extra steps I have to take to protect myself from the wrath of the sun, it means I get to go out and do things I can’t or won’t do the rest of the year. So with that in mind, let’s get into a recap of what I’ve been up to.

Biking (Roadster)

I kicked off the summer with a ride along The Great Allegheny Pass, er, a portion of it. It was a wild and crazy adventure complete with biking through a passing thunderstorm, camping two nights, and the swallowing of many bugs. We did 153 miles in 3 days. It was tough but such an amazing experience.

There are a few reasons I loved this ride so much. For starters, I’ve never done anything like it. Prior to this trip I’d never gone on a ride longer than 20 miles round trip, so this was pretty epic by those standards. Also, I didn’t exactly train for this but that’s because I’m a masochist.

Secondly, the group of people we took the trip with were awesome. They were positive, full of energy, biked circles around me, and lastly were about 20 years older than me. A few of them have kids my age. Needless to say, it was a humbling experience. If I didn’t have them, I wouldn’t have made it. Period.

Would I do it all again? Totally! I love a challenge, but I would probably train the second time around.

Cascade Brewery (and a waterfall or two)

The Pacific Northwest was awesome! Portland in particular. Sure, Portlandia is one of my favorite shows, but did I think I’d find the bliss I experienced only forty-five minutes outside of the city? No. But I did. And I’m grateful. I need PDX in my life, like forever.

Mt. Rainier (in all its glory)

Despite the fact that I threw in the towel about fifteen minutes from Camp Muir, I still made it pretty far. I can’t be disappointed in myself for stopping where I did. In a perfect world, maybe, but given how I felt at the time I did this I am proud of myself. The views were beyond breathtaking. I want to quit my job and move to Washington immediately.

Mountain Biking

While practicing a stoppie, I almost flew over the handlebars. Fortunately for me, my left leg twisted weird and then and voila, instant bruise.

Since I purchased my mountain bike for the epic Allegheny Pass (lots of asphalt), I have been going out once a week away from concrete to get down and dirty on trails it was actually made for. It has been really hard but so rewarding. Mountain biking is dangerous, fun, and makes me feel like I can do anything. I forget about lupus and being sick in general. Simply put, I love it.

Philadelphia

Let’s face it, as much as I love being on my bike riding downhill and through streams, or even climbing trails that take me closer and closer to God, it doesn’t mean I can’t also be a city gal. Out of all the cities I’ve traveled to (not a ton) I have loved them all–with the exception of where I live. God knows how I feel about Baltimore, but I digress. Philadelphia is no exception. It delights me in a way I can’t quite describe. The museums, history, and shopping. Even the parks. The city of Brother Love has my heart.

This summer has been filled with the good, bad, and ugly but through the many adventures I found myself in, I had a blast. Besides, my favorite season yet is fast approaching! Autumn, how do I love thee? Let me count the ways. . .

Until next time! Live. Love. Evolve.

Summer Blues

July 23, 2014August 4, 2014 ~ Jewel ~ Leave a comment

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!

June 10, 2014June 16, 2014 ~ Jewel ~ 1 Comment

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

June 7, 2014 ~ Jewel ~ 1 Comment

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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

Summer Protection & Lupus

June 4, 2014June 16, 2014 ~ Jewel ~ Leave a comment

Perhaps 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