Five Years Later: A Love Note to my Brain

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:

Dear 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.

Love, Elena



(Image Source)

5 Tips on How to Bring the Retreat Indoors

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:

  1. 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!
  2. 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!
  3. 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.

    Prednisone moon-faced and recovering from Lupus Cerebritis in 2009 with the aid of my dad’s fabulous indoor garden in the background.

  4. 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.
  5. 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!


Redefining the Mission to Remission

On the side bar of this blog, I, in my regular exclamatory fashion, boldly proclaimed that I was on a “Mission to Remission!” The accompanying photo was romantically side-profiled, my feet perched on the edge of a dusk-reflected shore, backpack adventurously strapped on, eyes fixed on the rocky, lupus path ahead. Typical Elena-style dramatics to say the least!

19534_267734393703_3560850_nI deleted it recently without much thought, but with the feeling that it no longer belonged, although at the time, I couldn’t articulate why. This past weekend, I walked proudly beside my brave and amazing friend, who is in remission from another chronic, invisible illness, Crohn’s. I started to think about the word “remission” and what it means to me now, almost five years after my dramatic proclamation.

Remission is defined as a temporary or permanent absence of the manifestations of disease. According to the Lupus Foundation of America, the more common usage in relation to lupus would be:

… “in remission on medications, or quiescent (quiet).” This would mean that the person with lupus is taking Plaquenil® (hydroxychloroquine) and/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc. This is the goal for most people with lupus, but is not always possible.

As it is defined above, I am not in remission, although I am the closest I have ever been in my almost 13 officially diagnosed years. I am on Plaquenil, my ever “Constant P,” and I have not had a major flare causing hospitalization in almost five years, the longest gap of time in my lupus history. I no longer suffer from debilitating pain caused by joint and organ inflammation, but I still have a constant butterfly rash, Raynaud’s Syndrome, lupus headaches/fog, muscle weakness, fatigue, sun sensitivity, and a chronically (and sometimes, dangerously) low white blood cell count. A few weeks ago, my rheumatologist decided I was stable enough to only see her every nine months, an unexpected milestone I never thought I would achieve.

The war cry of my mission to remission was what I needed at the time I put it up, the aggressive self-motivation that helped push me through my long and hard recovery. I am on the other end of that journey now, sitting on the simmering pot of my semi-dormant disease. The difficulties are different now, the struggle to keep my independence, the professional and personal sacrifices required to keep the wolf at bay, the pressure, the stress, the fear that I will fail and all the pain will come back. The mission is a quieter request these days, a mindful striving for “quiescent” or from its latin roots, “to be still.” I want to capture that stillness, to hear the slow, softening whisper of the simmering pot whether I achieve my dream of getting off my medications or not. The goal of being medication-free has been a huge fixation, a result of over a decade of on and off experimentation with a long line of drugs that at one time, almost cost my life. The goal remains, but a dormant, quiet state with the use of medication is a more realistic and equally desired outcome.

I used to think that remission would be trumpeted in, red carpets unfurling, but I suspect there will be nothing at all, just the sweet, non-existent sound of lowered fists, of balance restored. A mission accomplished for that one moment in time, a silent celebration I hope I will be lucky enough not to hear.

Thank You For Being Here

Much to my complete shock and amazement, FACE FORWARD has been selected by as one of the best lupus blogs of 2014! I am so incredibly humbled and honoured to be featured on this list! To my followers and visitors, both new and old, thank you for being here. I am always so grateful to face forward with you.

And of course, a big thank you to for such unexpected and wonderful news!

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Screen shot of my feature page on!