FF’s First Guest Post: Fight the Wolf by Valerie Green

My inbox has been filled with emails from some pretty amazing and inspiring lupies (and non-lupies) from around the world. Recently, I had the pleasure of “meeting” Valerie Green, the author of our very first guest post. She is a passionate lupus advocate with some stellar suggestions on how we can “fight the wolf” during Lupus Awareness Month. She is based out of the United States, but regardless of where you live, the info still applies! Valerie, I’ll let you take it from here:

FIGHT THE WOLF by Valerie Green

May is a month to celebrate life and howl in the face of lupus. The disease affects millions and now is the time to rally together to take a stand against the wolf. Lupus awareness and research nonprofits are making incredible strides to find a cure, but they, like everyone else, need all the support they can get- it get’s slippery! Apparently, research shows that Americans know little or nothing about lupus. We need to change that! There are many ways you can support lupus awareness during May, but here are some really fun ways to make an impact.

Move, dance, and beat the street! The Lupus Foundation of America hosts walks all over the country. Find a walk near you by searching your local lupus chapter and join the movement! If you can’t attend a walk, support someone who is or join the Alliance for Lupus Research’s virtual walk.

POP! Put on purple on May 15th and do what we all do best- take a selfie. This great tumblr sponsored by The Lupus Foundation of America is a fun way to tell people why you’re looking great in purple to support lupus awareness. And don’t limit yourself. Lavender, violet, lilac, magenta- wear every shade with pride!

Remember Lucy floating around the sky with diamonds? Well, apparently she was a real person, who sadly died of lupus. One of the most famous Lucy’s in history was slain by the wolf. How does everyone not know this? John Lennon’s son, Julian, is trying to change that. He’s the Lupus Foundation of America’s Global Ambassador and was a dear friend of Lucy’s. May 10th is World Lupus Day and Julian wants us to take a pledge to educate others and raise awareness.

Lastly, you can shop for a cure! Literally, anywhere online. Goodshop.com has donated thousands of dollars to lupus research because people like you have shopped through their website at stores like Pottery Barn, Hotels.com, FTD. Signup and select one of their 24 lupus research foundations, like The Lupus Foundation of America or The Alliance for Lupus Research and they’ll donate up to 20% of any purchase you make online to help find a cure for lupus.

Valerie Greene is passionate about spreading awareness about lupus because it is a cause close to her heart. She has devoted her life to fundraising for nonprofits to help make an impact on the world. Purple is also her favourite colour. 

Thank you, Valerie!

Here’s a sneak peek of what’s on deck for Face Forward:

I’m pleased to announce that I’ve been asked to review “Fabulupus,” the first lupus book for young people on how to be young, successful, and fabulous (with lupus). I’m turning the pages as we speak and I’m looking forward to sharing my review here on the blog! For now, check out their website at fabulupus.com. The ebook version is now available, so it’s even easier for you to read along with me! Book club, anyone?

What is Your “I Have Lupus” Elevator Speech?

You can always feel it coming. Your lips hover over the rim of your glass in a polite smile as your new acquaintance chortles over the newest viral cat video. You try in vain to empty your glass and excuse yourself for another, but the words come much too swift, racing over the crescendoed buzz of the crowded room.

“So… what do you do?”

It’s a social nicety we’ve all come to expect and depending on where we are in our lives, it can be a loaded question. Out of all the tedious small talk topics, the answer to this question has always required a deep, preparatory breath in. Back when I was in university, I prepared myself for judgement over what many viewed as an impractical and useless degree. Years later, when I was on sick leave for six months, I sweated over explaining why I could no longer take care of myself or do my job like a normal person. And now that I’m half-time, I struggle with how much to reveal in regard to why I work less. The “I have lupus elevator speech” has always been a challenge for me. In business, an elevator speech or pitch is the short, succinct expression of an idea, a company, product, etc. that is approximately two minutes, or the average length of an elevator ride. In this specific case, the goal is creating a short and sweet explanation of how lupus has affected my work life that doesn’t make anyone feel uncomfortable, myself included. How much do you say? Should you say anything at all? Do you avoid the question? Do you tell a white lie? These days, I am so open about having lupus, I have a real fear of doing this:

Cartoon by @ MartinShovel

by @ MartinShovel

(image source)

The overshare monster is definitely worse than the cooing cat video addict.  Anyone who hears, “I work half-time because five years ago, lupus-related brain inflammation made me lose my mind,” is guaranteed to feel awkward. And although I’ve never quite said it in that way, I’ve definitely given more information than necessary, the kind that I normally keep to the pages of this blog. The whole concept of a lupus elevator speech made me think about the patient’s role in lupus public awareness. How can I spread awareness beyond the lupus-sanctioned months of October and May? What are the small things I can do everyday? Writing in my blog and my twitter account primarily connects me with people who know about lupus already, so I’m preaching to the choir. So, when I have the opportunity to let cat video guy know that lupus exists and that, yes, I have it and that I’m not ashamed of it, shouldn’t I do that? More often than not, my standard, quick response is, “I’m half-time for health reasons.” The person I’m talking to usually refrains from asking questions and instead of feeling relieved, a strange sense of guilt washes over me. It’s a half-truth, but I feel like I’m lying. What is the balance between being honest, doing your small part in promoting awareness, and oversharing? As the social invites of the holiday season start to roll in, I’m hyper aware that I need to give my “I have lupus elevator speech” some serious thought.

What is your elevator speech? What do you say when you face questions that can’t be answered truthfully without mentioning lupus? How do you promote awareness in your everyday life? Tweet me @ElenaAnciro or comment below. I’d love to hear your thoughts!

Now, for some general Face Forward news:

  • You may have noticed that our FF meeting place has a new, wordpress-free domain name: www.lupusfaceforward.com.  I wanted to pay homage to the original domain and blog name (Lupus Face) and merge it with the current. It represents this blog’s journey and reminds me to move forward, but to never forget the lessons of the past.
  • I’ve had some exciting opportunities come up lately, including training and learning how to be a graphic recorder. I’m hoping to practice my doodling skills here on my blog, creating images like the lovely cartoon @MartinShovel created above, but on aspects of living with a chronic illness. In the meantime, here’s a great article on graphic recording/facilitation in case you want to learn more!
  • I’m also excited to announce that I’ve been asked by New Life Outlook to be a monthly contributor for the lupus portion of their website. New Life Outlook is an online health resource network, chock full of personal stories, medical information, and a chat forum for a variety of illnesses. I’ll link up my November article when its posted, but in the meantime, check out New Life Outlook’s awesome website! 

And lastly, since my busy schedule last month caused me to miss the opportunity of posting during Lupus Awareness Month, I’d like to share some of the lupus awareness materials that have caught my eye over the years. Click on the graphic to link to the original website.



Till next post, my friends.

Sending you positive vibes for the week ahead!

An Unexpected Honour

Earlier this week, I was notified that Face Forward received nominations for two WEGO Health Activist Blog Award categories: Best Kept Secret and Best in Show. I’m feeling incredibly honoured and grateful to be counted amongst such passionate and inspiring health advocates!

As my long-time readers and newfound followers, I hope you will consider supporting Face Forward by taking a moment to vote.  Click on the WEGO Health Activist Award image on the sidebar, or click here to be directed to my profile link. They allow you to vote twice, once for each of the categories I am nominated for. They don’t allow you to vote for both at the same time, so you will have to click the endorsement button again to vote for the second category. I also encourage you to nominate a health activist in your life and to check out the rest of the nominees and their respective causes. It’s amazing to see so many people advocating for, and creating positive change in patient care and support!

One of the things I love about the WHAAs is that the contest isn’t driven by popularity alone. The top 3 nominees with the most endorsements (votes) in each category will automatically become finalists, but the remaining finalists will be determined by other factors. A nominee’s blog/social media follower count isn’t considered in the judging process either, which gives lesser known blogs a fighting chance. Becoming a finalist would be exciting, but my real hope is that my nomination will create more visibility for the site, so I can connect with more people. As I said in my last post, I really want to increase FF’s reader-driven content and this could be a great way to do it!

Coming up next on Face Forward, I’ll be posting my thoughts on public awareness campaigns, inspired by the recent ALS Ice Bucket Challenge criticisms and the commencement  of Lupus Awareness Month. My first of what I hope to be a series of reader suggested posts will make its debut as well! Oh, and be sure to check out the newly posted “FF Quote of the Moment” on the side bar. It’s one of my all-time favourite proverbs that has, at particularly troubling and difficult junctures of my life, given me focus and perspective.

So in closing, I want to send out a big thank you to WEGO Health for all they do for health advocacy and to you, my readers, for all your support!

Taking a Moment for Meso

The creation of Face Forward revealed a community of lupus patients and caregivers from across the globe, who continue to be a major source of inspiration and support. My hope has always been that this blog would be a meeting place for health warriors of all kinds, since all illness/pain sufferers can, on some level, relate to the day-to-day struggles of maintaining one’s quality of life. One such warrior is Heather Von St. James, a rare mesothelioma cancer survivor who beat the odds eight years ago when she was given only fifteen months to live. Mesothelioma is a cancer caused only by asbestos exposure and is completely preventable. Heather and her husband, Cameron, launched the “Take a Moment for Meso” campaign to spread awareness and approached bloggers like myself to join in the effort. Face Forward is happy to spread the word and to share the wonderful news that Heather continues to thrive after a life saving surgery that included the removal of her left lung. Since today, September 26th, is Mesothelioma Awareness Day, there’s no better way to celebrate than to share some potentially life-saving facts in honour of our cancer defeating superhero, Heather: SUBTITLE Head on over to the Mesothelioma Cancer Alliance website or mesothelioma.net/mesothelioma/ for more information. If you know anyone you believe to be at risk, please “take a moment for Meso” and spread the word! And keep an eye out for a “best of” list of my favourite posts from the last five years of Face Forward. It will be a belated blog birthday celebration in a month of lupie milestones, so get ready to fill the comment section with your favourite post choice and what you want me to write about in the Face Forward future!