Face Forward Turns 7

Excerpt from Blurry Face & the Impending Victory of the Battle of the Brain:pc1902332Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page.  I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know.  Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea.  I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go.  I wrote a caption underneath, “A journey of a thousand miles begins with a single step.  See you at the top!”  I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.”  I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go.  It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet…

A month and a half later, I started this blog.

Exactly seven years have passed and I am still amazed that somehow, while in the throes of brain inflammation-induced psychosis, I not only knew I was about to face something life altering, but I also knew I would conquer it. Amidst all the suffering, it was a beautiful gift, this access to a powerful, confident inner voice that wanted to be heard.

Writing in this blog has helped transform my perception of who I am, my disease, and the kind of life I want to live. It uncovered this magical online platform for healing and connection. I now know that I needed to share my story in order to fully accept what was happening to me.

Terminology note: If you were wondering about the term “keeper” in my quoted text, I stopped calling my loved ones that a few years ago. I can recruit people to help me accomplish my vision of wellness, but at the end of the day, I am my own keeper. I am the CEO of my health.

To begin Face Forward’s 7th year on a positive note, here are my top 7 wellness victories:

  1. I can sleep lying down! (no more chest tissue inflammation)
  2. I’m down to one medication and it’s NOT chemo or Evil P (prednisone).
  3. My rheumatologist sees me every twelve months vs. every two weeks.
  4. I left my FT job, for a flexible, PT position that allowed me to rest if I needed to.
  5. Five years after I did #4, I left that PT job to pursue my true passion.
  6. I ran two 10 K races – I used to struggle with walking one block.
  7. I haven’t been hospitalized since this blog was started.

It hasn’t all been victories and trust me, there have been times when I’ve felt completely paralyzed with fear and anxiety. In fact, the last few months, I’ve been feeling really disengaged and unmotivated when it comes to my self-care. I am starting to feel the consequences and yet, I am unmoved. I’ve been trying to make sense of it on my own, but after weeks of frustration and negative self-talk, I think I’m going to try to figure it out here – with you. Part of the reason why I continue to write is because I think it’s important to be candid about every part of chronic illness, especially how it effects us mentally. More to come on that later…

For now, I will say happy 7 years to this weird, little blog that was born out of chaos, but remains a steadying reminder of miles traveled and hard won. “The top” is in every step, over and over again, everyday of this lupus life.

Thanks for travelling with me. I’m glad you’re here.

Belated Goodbye to 2014

First of all, I’d like to send a virtual hug and a warm welcome to Face Forward’s new followers! Connecting with you and reading your supportive and inspiring comments brightened my days during a very busy and tiring month. I’ve been aching to post, but I’ve had to prioritize napping over blogging in the small amounts of free time I’ve had. It’s late and I should be in bed, but I needed to touch base to let you know I’m thinking of you and to give you a quick update on some recent(ish) Face Forward news.

It’s weeks after the fact, but I’m still excited to announce that my first article as a monthly contributor for New Life Outlook is now online!  Click here or on the picture below for my take on the importance of support and the healing power of shared experience. How do you create and sustain the right level of support in your life? I’d love to hear your story! My upcoming article touches upon my “lupus elevator speech” post and our personal roles in advocating for lupus awareness. I’ll let you know when the article is posted on the site! Screen Shot 2014-12-10 at 1.24.56 AM In other news, I’ve set up a new email address that is connected to Face Forward’s new domain name. If you would prefer to connect privately instead of commenting on the site, you can contact me at elena@lupusfaceforward.com. My email will always be visible at the bottom of the homepage and within the “About Elena” page link.

And so, my friends, we’re already half way through January and full speed ahead into 2015. As we move into another year in search of balance and health, I’d like to share a comment that a follower posted two weeks ago:

“… I will remember that even when I cannot go very far, I can always face forward.”

This comment really touched me. It is the message I hope all my readers receive when they visit Face Forward. It’s the sentiment and change in perspective that moved me into a completely different (and much healthier) phase of my lupus life. Thank you for your wise words, Paloma. I may have to make them a permanent fixture on the blog!

And with that, I say good night. As always, I am locked in a battle with my night owl self. She stuck around even after prednisone left, and she doesn’t care how busy or tired I am. It’s a problem that begs to be solved, but for now, I’ll take my losses and end tonight’s battle here and now.

The Need for Expansion

This blog is overdue for a lupie confessional, so here’s a peep into my most recent stumble into a lupus mental trap:

Last night, I changed my twitter handle from the name of this blog (@_face_forward) to @ElenaAnciro because living with lupus is just part of my story. I was in need of that reminder, of the room to expand beyond the deficiencies in my blood, the ever present defiance of my body. I’m proudly shaped by it, but I struggle not to be defined by it… especially last night, for no particular reason at all. Because that’s what happens when you have a chronic illness, it makes you question who you are, or more so, who you could’ve been without it. It’s a silly social media switch up, but it makes me feel less compact. The name change is a statement: There’s more to me than that.

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(image source)

 

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!