The Outdoors (Despite Lupus)

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

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. 😀 Stay positive my friends!

May is Lupus Awareness Month!

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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

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!