What Would You Say?

CBC Wire Tap‘s bittersweet video compilation of life’s lessons stirred me to pose this question to all of you: What would you say to yourself at different points of your lupus journey? At diagnosis? After one year? On your last hospital visit?

As most of you know, my most powerful lupus lessons were learned almost exactly six years ago, during my last major flare. This month, my lupus cerebritis anniversary passed unnoticed until a friend mentioned it days after the fact. The shock of not remembering was quickly replaced  with elation. Memory has had too much power over me the last few years. To feel its grip loosening in this way is what I’ve been waiting and hoping for.

Thanks, brain! This is the best anniversary gift you’ve ever given me! 

That being said, I don’t think I should let six hospitalization-free years pass by without some kind of recognition! The video inspired me to come up with my “How to Age Gracefully with Lupus” words of wisdom for the Elena of six years ago. The perfect way to mark this milestone!

Dear 28 year old,

Don’t panic. Take it minute by minute if you have to. No matter how dark and full of pain your life feels, seek out gratitude – it will anchor you, it will keep you fighting. When in doubt, NAP. Saying no will give you more yeses. Seriously, you need to trust me on this one. And most importantly, there are people out there who do understand. FIND THEM.

Love, 34 year old.

—-

One more message, before I go:

Dear YOU (yes, you!),

So glad we found each other.

E.

p.s. Leave me a comment with your words of wisdom to your past selves – I’d love to hear them!

The Gift of Unconditional TLC

Happy Sunday! I hope you enjoyed Valerie’s take on what we can all do to raise awareness in Friday’s post. Since the awareness mojo is already flowing, I thought I would share the article I wrote for New Life Outlook that lists ten more ways you can help raise lupus awareness. Click on the screen shot below and let me know if you have any ideas of your own to add to the list!

awareness article

It’s Victoria Day long weekend here in Canada, so many of us are at the cabin, campgrounds, or settled in for a comfy and relaxed few days at home. Where I live, May long weekend is notorious for giving us heavy rain or as is the case this year, a chance of snow (shudder). Yet, regardless of the forecast, there remains this determination and will to unwind, come hell or high water. The drudgery of daily life can be a black hole, so we cram all that TLC into small pockets of time; long weekends, Christmas holidays, vacation time. Somehow we believe that our worlds will balance in that small amount of time, which is why vacations can sometimes feel more stressful than relaxing. Even in our leisure time, we put pressure on ourselves to achieve instead of letting ourselves relax without conditions.

I like the idea of unconditional TLC, but I am realizing that putting that into practice is another thing entirely. I’m currently on a self-gifted, extended break to recover from several energy depleting months. I am two weeks in and I filled the entire first week with volunteer commitments and the second week, I managed to assemble a schedule that was just as busy. It’s a different kind of busy, which I think is okay, but I need to give myself some time to unravel and breathe first. No avoidance, no conditions, no need for justification, just BECAUSE.

Do you feel like you have to justify the breaks you give yourself? Are you able to create space in your life for “long weekend moments” everyday?

I know my posts have been few and far between in the last little while and most have been around information sharing of various kinds. I’ll be jumping back into my storytelling-focused posts very soon, I promise! In the meantime, I hope you all create some space today for some unconditional TLC!

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?

In Pursuit of TLC

Take care of this momentThe pursuit of consistent self-care lives in the penthouse of my mind, ever present, most often personified by the wagging finger of guilt and dread. Are you sure you want to eat that? You don’t really think you can handle all that, do you? You’ll get sick if you do that. Stay home. SAY NO.

Sometimes I get defiant and turn that voice off because it’s exhausting to care so much about the consequences of everything. I eat what I want. I take on too much. I go through cycles and each time, I pay the price.

A self-inflicted hectic pace has resulted in my absence here and as I start to feel some space opening in my life, I can hardly wait to fully embrace a gentler pace. Ever since high school, I’ve taken on multiple jobs and projects at the same time, my energy and attentions constantly divided. I’ve come to the sad realization that I’ve never given 100% to anything. How could I? It’s time to simplify, to focus in: I need to take care of this moment. I need to figure out what that means in the context of my life. Big decisions lay ahead…

In other news, I’ve missed this tiny corner of the blogosphere! I’m looking forward to spending more time blogging and connecting with you! In the meantime, here are some FACE FORWARD updates:

  • I’d like to give a huge shout out to the winners of this year’s WEGO health activist blog awards. Congratulations to everyone involved! It was such an honour to be nominated for two categories and to have had the opportunity to discover the advocacy work of so many amazing individuals.
  • I also want to spread the word about a fabulous Facebook group called “Changing the World When You are Chronically Ill, Disabled, or Housebound.” According to creator, Esther Smith, it’s a “collaborative community of chronically ill, disabled, and housebound individuals, coming together with ideas to make small differences in the world, changing the world together.” How awesome is that?
  • Lastly, I’ve created a “Links: Get Connected!” page located on the top bar of the blog. I’ve listed a variety of sites ranging from lupus blogs to my favourite food bloggers, to some awesome blogs that will give your brain a break from health-related reading. If you want to be added to the list, email me at elena@lupusfaceforward.com!