About Elena

THE LILYPAD

Suffering from severe arthritis and pericarditis (inflammation of the heart lining), I was officially diagnosed with Lupus in 2001 at the age of 20.

In 2007, I took Celebrex in an attempt to quell debilitating joint pain and a case of costochondritis (inflammation of the cartilage that connects the ribs to the breastbone). As a result, I went into organ failure and almost died of anaphylactic shock. From that moment on, anti-inflammatories (NSAIDS) were no longer available to me as treatment. Within a few months, the costochondritis returned. Changes in elevation caused chest crushing pain, but my fears of another allergic reaction kept me from seeking treatment. I “slept” sitting up for the next two years.

In the summer of 2009, my lack of sleep was chronic due to costochondritis pain. I lost my appetite and shed 23 pounds over the course of two months. Joint pain and inflammation was limiting my mobility and I would wake up with swollen body parts, including my head. I started staying up all night and eventually I experienced personality changes akin to the symptoms of bi-polar hypermania. The doctors diagnosed me with Lupus Cerebritis (inflammation of the brain) and warned my family that I may never be the Elena they knew again.

After six months off work, four cycles of chemo, pharmaceutical experimentation with prednisone, imuran, methyltrexate, and plaquenil, switching to a half-time position, major lifestyle and diet changes, and with the love and support of those closest to me, I slowly found my way back to the Elena they knew.

“… to have been always what I am, and yet so changed from what I was.” – Samuel Beckett

I’m still on the journey of understanding how Lupus lives in my body, in constant search of that magic combination of treatment, lifestyle, and diet that will keep my condition stable. By losing who I was; my job, my health, my independence, even my personality, I was given the chance to start again, to face forward with a clean slate.

I found myself writing for the first time since my teens via the strange birth of this blog, rediscovering my creative self and reclaiming old dreams, running two 10 Ks, solo traveling in the mountains, and as of 2017, it’s been 8 years since my last hospital visit due to lupus. The last few years have been wrought with some of the most difficult mental and physical challenges of my life, but it has also been a time of rebirth, rediscovery, and personal re-engagement.

Speaking of getting personal…

  • I’m a mostly vegetarian prairie girl who loves the arts, neuroscience, daydreaming, and a good nap.
  • I’m a sucker for epic adventure stories, ripple chips, inspirational quotes, and my two adorable nephews.
  • I’m a chronic night owl/aspiring early bird and a textbook Gemini, who tries to see the glass half full!
  • I also write monthly articles for New Life Outlook – Lupus on a variety of topics re: living your fullest life with lupus. Click here to check them out!

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I’m happy you dropped in to see me here in my little corner of the Internet Universe. Relax, make yourself a cup of tea, and stay for visit!

 

 

Do you have a question or a comment you would like to express privately?

Email me at elena@lupusfaceforward.com.

Make dreams come true

4 thoughts on “About Elena

  1. I’ve really enjoyed reading through this blog. I was diagnosed with lupus a year and a half ago (more recently, RA), and it has been one hell of a struggle to adjust to this life. It is refreshing to read about someone who has fought through it and flourished in spite of it (thinking about the 10Ks…). In any case, thank you for making this blog and I look forward to reading more in the future!

    • Hi, David! It’s so nice to meet you. I am so glad that you’ve enjoyed reading my blog. I’m sorry to hear of your recent diagnoses, but rest assured there is a whole community of people online who are here to support you. Let me know if there is a topic or question that you would like me to explore on Face Forward. I’ve been behind on posting lately, but will rectify that soon. I hope you will continue to visit and comment on the site!

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