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.

Goodbye, 2015!

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While writing my latest article for New Life Outlook on the benefits of journaling, I realized that when I reflect, I prefer the least amount of structure, and most often, I don’t journal at all. It’s just me, my cup of tea, and my random, scattered thoughts. So, I thought I would change it up and mark the end of 2015 with some structured contemplation. Yes, that’s right, the year-end questionnaire! After browsing a few sites, I decided to combine some of HubPages’ Year End Review health questions with their general review questions. Why? Because life isn’t just about managing lupus!

  1. What was your favorite exercise this year? Taking long walks in the park/forest (but not during peak sun hours, of course!)
  2. What medications are you currently taking? Plaquenil
  3. How did you manage your stress this year? Ginger tea, treats, a blanket, and a Netflix or reading binge
  4. What was your biggest health achievement this year? Discovering on December 23rd that due to my stable health, my next rheumatology appointment will be in ONE YEAR. It’s the longest I’ve gone between appointments!
  5. What do you wish you would have done differently in regards to your health this year? I wish I would have defeated my inner night owl more often, exercised more consistently, and said no to all that Halloween chocolate that led to two months of eating and feeling terrible.
  6. What did you do this year that you have never done before? I did a theatre performance in a moving elevator!
  7. What one word best sums up and describes your experience last year? Surrender
  8. What was the biggest risk you took? Quitting my job of over ten years.
  9. What are you most grateful for this past year? The fact that my lupus continues to be stable, the support and love of my family and friends, time with my nephews, the opportunities I’ve had to do what I love, and the freedoms I have living in Canada.
  10. What do you wish you had done more of? Writing
  11. What do you wish you had done less of? Procrastinating on the internet
  12. Knowing what you know now, if you could write a letter to yourself that would travel back in time so that you would receive exactly one year ago, what advice would you give yourself? Stop doing too many things at once! Don’t procrastinate. Be confident – you are on the right path. Don’t be afraid to let go.

What were you asking yourself as the year came to an end? Share your answer to your favourite question from the list above. I’d love to hear how you’ve been feeling about your triumphs and challenges from the last 365 days!

A quick update regarding the Make Great Light draw from last post. Unfortunately, there were no entries, which I assume is because you have the same problem as me and don’t have the right type of lighting to try out the filters! Regardless, I want to send out a big thank you to Make Great Light for generously offering a free filter and for offering a discount to people with UV-sensitive lupus.

Also, a head’s up that the New Life Outlook article I mentioned will be online in mid-January. As a huge journaling geek, I had a lot of fun writing this one. I can’t wait to share it with you!

There are also a few more additions to Face Forward’s Links page for you to check out. Are you writing about your lupus journey? Remember, getting your name added to the list is as simple as commenting on this post or emailing me at elena@lupusfacefoward.com!

Happy Day 1 of 2016, my friends. Wishing you all good health and happiness!

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!