Living in Maryland means my life is void of mountains—sad I know! As a native Californian I live for the outdoors, and it’s something I’m not ready to give up. Of course, we do what we can in Maryland such as hiking the trails that do exist near our home. Aside from that I’ve given up any hope of finding real mountains or ideal camping conditions though it hasn’t stopped us from trying. Needless to say, when we travel and happen to end up in a place with either a beach or a bad ass mountain range we gravitate towards that. Continue reading
Author: Jewel
Biking in the Mid-Atlantic
I’m writing today’s post from the comfort of a friend’s car. Our convoy of cars, trucks, and SUV with bike racks are headed north to Pittsburgh. This weekend we are going to ride a portion of the Great Allegheny Passage, starting from Pittsburgh, PA and ending in Cumberland, MD. The total distance will be around 150 miles and unfortunately it isn’t all flat! But hey, let’s live a little.
I started mountain biking around the same time I met my fiancé, in 2010. It’s a challenging yet rewarding activity I really love. Since moving to Maryland a few years back I haven’t been on a bike much, but that’s all changing since I purchased a new bike a few weeks ago. We took it out on some trails and had a blast. It is clear I will need some work before I feel completely comfortable and I’m also looking into taking a skills course to speed that process up. I need all the help I can get! If you’re interested in mountain biking only I have a blog dedicated to that. I’ll add that link below.
Road biking (this particular ride will be road and trail) isn’t something I’m all that familiar with, but that’s not to say I don’t like it. When the opportunity presented itself and we were invited I signed up immediately. This weekend will be the farthest I’ve ever rode-should I finish! I’m both enthralled and nervous. What if I get sick? What if I’m just too weak? What if I hate it!? I can’t help thinking like this, I’m hard wired.
Today we ride for about 6 1/2 hours to cover 65 miles. I really hope I make it and I also hope I’m not the last one. Wish me luck ya’ll, and maybe a prayer or two 😆.
I’ll be posting pics as I can! Have a great weekend!
Live.Love.Thrive.
Portland!
The Pacific Northwest has always been a favorite of mine and I’ve often wondered if it’s because the sun only shines during the summer. I fantasize about living in a place where the sun isn’t my constant enemy and I’m not constantly worrying about what clothes I should wear, if my hat will cover enough, or if the sun beaming on my arm will cause a flare. Thoughts like this make me hate the sun, but then I realize there are worst things so shut-up and be grateful. Naturally, I’ve thought about living in sun challenged Seattle, Portland, or even Vancouver.
When the opportunity to visit Portland presented itself, I almost leaped out of my chair. The people are warm, the city is gorgeous, and there’s so much to do!There are beautiful hikes only 30 minutes outside of the city. And the restaurants, oh my God, they were so good. I haven’t had decent Mexican food since leaving California–and I’m a bit obsessed with Mexican so you can imagine my suffering here in Baltimore. The carne asada tacos I tried every chance we had in were legit. Let me rewind and say that the food period was amazing. Portland is a foodie’s dream!
I have a girlfriend who put together a list of places were seeing or eating at and every place she mentioned was absolute heaven. I’m going to pay it forward and share my gems (during my uber short visit) with you!
Prost! – Cool German pub on Mississippi Ave. that has a cool vibe and really great beer. I will admit that I am not a beer drinker–but Portland is known for its beer so it was only right to try, which I did. Franziskaner Weissbier was crisp, refreshing, and dare I say…delicious!
Por que no? – A taqueria with yummy margaritas. I devoured my tacos with much pleasure.
Powell’s City of Books – Largest independent bookstore in the world. If you love books check this place out. Their rare book collection is impressive, and their self-publishing station is really cool!
Mapplewood Coffee & Tea – A quaint coffee shop with a special area in the back for the little ones to play while you sip tasty lattes. Divine.
10 Barrel is perhaps my favorite because of their pizza. No words can describe the quiet party in my mouth. It. Was. Good. Go some of their food and you will not be disappointed. Promise.
I can’t wait to go back and explore all Portland has to offer. I really enjoyed my sampling during the long weekend we were there. Until the next visit I will be dreaming of beer and coffee. #westcoastbestcoast.
Live.Love.Thrive.
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.
This is a recent picture from a trip to Portland last weekend. I love how carefree and happy I am here. 😀 Stay positive my friends!
Discover Soapwalla
Having Discoid lupus, an auto-immune disease, causes skin sensitivity to harsh chemicals and because of this I am constantly looking for natural skin care products. I like to think that I would care about the ingredients in my products even if I didn’t have lupus but hey, who knows. I do think it’s important for everyone to look at what they’re putting on their bodies, whether it’s hair products, makeup, or general skin care. Our bodies are absorbing all the stuff we put on it, so let’s try not to use products with ingredients no one can pronounce!
A while ago (it’s been years) I stopped using conventional deodorant. I didn’t like the idea of rubbing a stick containing aluminum on my underarms. I searched for alternate types of anti-antiperspirants and for some time settled on Tom’s. Tom’s has been alright and for the most part it works. Still, when I heard about Soapwalla and their natural deodorant cream, I couldn’t wait to try it. Unlike so many other deodorants on the market, this cream is formulated without the use of aluminum zirconium, sulfates, parabens, and petroleum. And yes, at first I was hesitant of a cream, am I supposed to rub this all over my underarms? But I can assure you it’s really not bad at all. The texture is like creamy frosting. Frost yourself my friends!
One thing I will note is that I used it once after I shaved and did experience minor irritation. The website clearly mentions this can occur but I took a chance. I like to live on the edge. ha!
I especially love that Soapwalla mentioned Lupus Awareness Month on their e-mail last week so yay for that! For the entire month of May they are donating a portion of their proceeds to Lupus Foundation of America and New York City Lupus Foundation. I have an excuse to try some more of their products, and for a great cause! Who doesn’t love handmade, vegan goodness?
If you’re interested in their story or simply want to try their natural goodies for yourself, please do! http://soapwallakitchen.com/ The founder actually has SLE so I am now happily supportive of her brand, mission, and with my limited exposure aside, products.
Lastly, please note that the above mentioned product was purchased with my own funds and I am not in any way affiliated with Soapwalla. The above opinions are my own. In the event I do receive compensation or use affiliate links I will always let my readers know.
May is Lupus Awareness Month!
Did you know that May is the LFA’s* dedicated Lupus Awareness Month (LAM)? As a result, I’ve decided to start a Discover series to spotlight my favorite brands who are also supporters or advocates of lupus. I am a brand loyalist through and through, though I love finding new brands who have beliefs which align with mine. This is not to say the companies must write monthly checks to LFA (or some other lupus non-profit), but if they so much as mention LAM I might be more than simply intrigued.
Stay out of the sun, protect yourself, and love the skin you’re in.
*For more information about lupus, please visit the Lupus Foundation of America’s homepage. www.lupus.org
Ciao!
Jewel
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.
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
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
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.
What's on my face 