The last month has been chock full of milestones: 13 years since my official diagnosis with Lupus, 5 years since my Lupus Cerebritis flare-up, and just last week, the 5th birthday of Face Forward’s strange and unexpected emergence into the blogosphere. To celebrate, I’ve compiled a list of my favourite posts from each of the last five years:
- 2009 – 2010: Where There is Tea, There is Hope and Goodbye Evil P – Yes, I’ve broken the rules already, but considering the first year of this blog has the most posts, I thought it merited two picks instead of one. My earliest posts are arguably the most intriguing in light of how my brain inflammation affected the content, but neither of my choices were written during the height of my manic episodes. “Where There is Tea…” is probably my favourite post of all-time. I fell in love with neuroscience in this post, a strong fascination that has stayed with me to this day. It is a reflection on tea, mindfulness, positive psychology, and brain power, but more importantly, it the first time I express a sense of hope and empowerment when it comes to my health. “Goodbye Evil P” marked the beginning of the end of taking Prednisone, something my long-time readers will know as a huge turning point in my physical and emotional recovery.
- 2010 – 2011: Face-Off: A New Name for a New Game – As my brain and body healed, the clarity of mind spurred a huge transition in the look and direction of the blog from an inward, hyper-personal focus, to one of reflection, but with more of an outward focus. I had finally escaped the confines of my mind and was determined to re-enter the world and my life. The dark and brooding theme of “Lupus Face: One in a Sea of a Thousand” was stripped away and the lighter, horizon-focused Face Forward was born.
Original blog header graphic for “Lupus Face: One in a Sea of a Thousand” (as of Sept. 2009)
New blog header graphic for “Face Forward: Finding Life in Lupus” (as of July 2010)
- 2011 – 2012: E’s Wellness Emergency Kit – The third year, I was immersed in re-engaging with movement through running and my Dance Diaries: Awkward Adventures in an UnCooperative Body series, teaching myself to heal my body with food through my Cooking for the Wolf posts, and starting to share my “Lupus taming” tips and tricks. This post lists the small comforts that have helped me through the Lupie cycles of fatigue and pain.
- 2012 – 2013: The Chance Encounter – During the fourth year, I was focused on setting health goals and the role that stepping outside of your comfort zone and creating new experiences for yourself (ie. varying degrees of epic adventure) can have on overall wellness. In this post, a stranger in a hot spring teaches me lessons in resilience and reveals the surprising conclusions one can only discover when traveling alone.
- 2013 – 2014: Redefining the Mission to Remission – The fifth year, I was very reflective and conscious of how the last few years have changed the trajectory of my life and the way I perceive my disease and my future. This post examines the evolution of my “mission to remission” and the merits of quiet victory.
I hope you enjoy visiting my favourite ghosts of Face Forward past. Comment below to share your favourite post with me, as well as your suggestions on what you would like to see in Year 6. I have some big plans in the works, including an exciting monthly feature by a guest blogger who will provide the unique insights of a medical professional with a personal connection to Lupus. I plan on strengthening my commitment to providing relevant, useful info combined with descriptive storytelling, improve the ease of navigation on the site, and begin to bring in other perspectives and tips on wellness that may not be Lupus specific, but still apply to our goal of sustained health. I also want Year 6 to bring the caregiver’s voice to the forefront, because really, where would any of us be without them? And lastly, be sure to check out my new “Blog Philosophy” page on the top bar menu or click on the image below to read about what I hope to accomplish in the Face Forward future. So, happy belated fifth birthday, dear blog! You’ve remained one of my only constants in a time of great change and uncertainty. We’ve had a tumultuous relationship, you and I, but I think we’re at a point where we can say that we’re in it for the long haul. Year 6, here we come!
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: Head on over to the Mesothelioma Cancer Alliance website 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!
Weeks ago, I marked the fifth year since I felt that strange push back, the crackled snap of separation from who I thought I was and that person who was doing things I never said she could. I took quiet note of this anniversary, the day lupus-induced inflammation took over my brain. I was going to acknowledge it here the way we all do when we find ourselves traveling the cycle of time, pausing to remember the pebble stones we lay down along the way. How far have I come? What have I learned? What will I do now? But I didn’t answer those questions, I didn’t want to. That day, it was enough to say, “yes, that happened.”
Today, an entire month later, I found myself belatedly marking the occasion with a love note to none other than my fascinating, enduring brain:
I still don’t fully understand what happened to you and I’ve come to accept that I never will. I don’t know how you managed to keep me, the real me, conscious amidst the chaos and for the times I was not, I want to thank you for protecting me and making me forget the worst of what “she” did. Thank you for being resilient, for allowing me to not only return to myself, but to uncover the parts I’d long forgotten. I’m sorry for leaving you vulnerable through my denial and meager self-care. I promise I will never do that again.
You are amazing and I’ve been grateful, so very grateful, every one of the last 1,825 days.
We all come to a point where we want nothing more than to wave the white flag, run for the hills, and nap (folded white flag = awesome pillow). Okay, the last part is Elena-specific, but you get the idea. Whether you’re running from work stress or the ups and downs of chronic illness, from time to time, we all need an escape. Fleeing the concrete jungle and freeing yourself out of doors makes sense, but what do you do when you’re stuck in an office or sun sensitivity has turned you into a 10 – 4, vitamin D deprived hermit? Here are 5 tips on how to bring the outdoor retreat indoors:
- In my 2010 post, “Me, My Brain, and I,” I discovered that “natural, tranquil scenes caused different brain areas to become `connected´ with one another – indicating that these brain regions were working in sync. However, the non-tranquil motorway scenes disrupted connections within the brain.” Remarkably, a painting or a photograph of a natural scene has the same benefits. My ninth floor office overlooks the heart of downtown, so I’ve set my desktop image to a lush forest pathway. When I take eye strain breaks, I clear my screen of documents and reveal my electronic get-away. Co-workers often linger for a closer look at the warm, rising sun pushing through the shadowy, dense mass of trees. Most walk away mumbling about changing their desktop image. Maybe you should, too!
- My desk is in a large room with other co-workers, so I usually have my headphones on to dull the noise and distractions around me. Lately, I’ve been listening to the nature soundscapes on Songza, especially the tropical waves playlist. It drowns out the noise and provides a background of soothing, natural sounds that allows me to focus on the large amounts of editing I do in my job. If you can’t go to the beach, listen to it!
- I’ve enjoyed the results of my father’s green thumb both indoors and outdoors my entire life. Because of him, plants are an integral part of my ideal living environment. The fact that I’m a sun sensitive apartment dweller has kept me away from the joys of an outdoor garden, so I’ve cultivated my own indoor version of hanging vines and terrariums, water plants, and other leafy varieties. According to an article by the Daily Mail, hospital patients with potted plants close by said they experienced less pain, anxiety and tiredness, while houses with plant-filled rooms contain between 50 and 60 per cent fewer bacteria than other rooms without plants. Have a murderous history with our green friends? Check out this link on 22 hard to kill houseplants. While you’re at it, add a few potted pals on your desk at work. Plants not only decrease stress and detoxify the air, they also increase productivity and creativity!
Prednisone moon-faced and recovering from Lupus Cerebritis in 2009 with the aid of my dad’s fabulous indoor garden in the background.
- Take your laptop or book and grab a spot in a coffee shop with a view, or somewhere with lots of indoor greenery like a conservatory. You’ll get “out” for a good dose of natural world goodness while getting a break from that sun-sensitive hermit suit.
- Think inside the box when getting together with friends during peak sun hours. Recently, on a particularly hot and sunny day, I had a picnic lunch with a friend in her closed in front porch. Don’t have one? Pick a room in your home with the best natural view, roll out a blanket, and enjoy! Take a scenic drive to a tea house out of the city or for the parents out there, set a playdate and head to an indoor pool, water park, or aquarium.
A nature retreat from the stress and challenges of our lives can be hard to do, especially for those of us living fast, urban lives. Trying to avoid an ever present burning ball in the sky at the same time is even more difficult. If you can’t have it all, be creative and have a small piece!
In other news, I’ve added a new “About Elena” page to the blog! I’ve wanted to create one for a while now, so I’m happy to be able to give my readers a condensed timeline of my lupus experiences along with a few fun, fast facts about who I am beyond my lupus journey. Check it out on the top menu bar of my home page or click here. Feel free to visit this page anytime to post any questions or just to say hi. I’d love to hear from you!