I started this site shortly after I received a terrifying diagnosis. My goal was simple. To be of service. To make life easier for people with celiac disease and other digestive disorders. Helping others was the perfect distraction. When I started out, I wanted to cheer people up, not bring them down.
I realize now that while I mentioned the diagnosis several years ago, I haven’t shared a piece of myself that matters. The part that went into shock the day I was told I had multiple sclerosis. I’ve dealt with this neurological condition every day since I was diagnosed in 2006. But the feelings that come up are something I haven’t spoken about. Something I’ve been holding in for a long time.
When I was diagnosed with multiple sclerosis I entered a strange limbo. For 8 years, my health was good enough. Then, in 2014 things took a turn for the worse and my life since has been full of ups and downs.
Things got bad last year after a trip to Mexico with my husband. Upon returning, I ended up in the hospital with transverse myelitis, numb from the neck down. I remained that way for months.
I’ve spent the entire last year rebuilding my health. Going to Hyperbaric Oxygen Therapy treatments 6 days per week, getting physical therapy 3 days per week, receiving intravenous nutrients 1 to 2 days per week, and occupational therapy to regain use of my left hand (my dominant hand) 1 day per week. It was a grueling rehabilitation, and thankfully it mostly worked.
I stuck to my schedule week-in-and-week-out. I missed almost every winter weekend trip to the mountains with my family. I entirely skipped trips to Denver for work. Events such as book signings, TV appearances, and fundraising dinners went out the window. I haven’t been to Denver in well over a year. The geography of my life became extremely small.
In addition to local trips, I also gave up air travel because each time I’ve had an MS attack has been right after an airplane flight. My doctors think the low pressure in planes might affect my brain and nervous system, or that it might be the radiation. Frustratingly, no one understands it. So they told me to avoid air travel. I wasn’t happy about that, but I didn’t set foot on an airplane for over a year.
Last week I went on my first trip in 13 months. My husband and I flew to California. We ate our way through Napa, then we met up with the boys and threw my Dad an 80th birthday party at an adorable restaurant in my hometown, Davis.
It was challenging to take more than a year off and truly slow down. Many people could not understand it and questioned my decision. It took all of both my willpower and my ability to surrender to get well. To give myself the space I needed to heal. To say no to countless invitations for work and play.
I wanted to write about this to give you all a real update of where I am. It might look neat and tidy, and even perfect on social media, but that is far from the reality. Like so many of you, I have struggles both large and small everyday that can’t be conveyed through a photo. I live in limbo, dealing with a major neurological illness, on top of celiac disease, hashimoto’s autoimmune thyroiditis, and several other challenging medical issues.
Although I’m continuing to rest and heal, I live not knowing what’s around the corner. I hope that by sharing this piece of myself I can provide comfort to others walking their own tightrope. Those in the darkest days, dealing with something we are told to hold in. Thank you for supporting me since I started this blog in 2006. I’m so grateful we are on this path together.
Robin says
Elana, you are such an inspiration! Thanks for sharing your story. I have shared your blog with others and your books. I have severe digestive disorders that showed up in 2009 and going gluten free has saved me. Thanks for being a huge part of my journey.
Sara says
How brave you are! Thank you for this post. You are the light in many people’s lives and you are an inspiration.
Lynn Warnock says
((((((((((((((((((HUGS))))))))))))))))))))))))))
Marlana says
I hope that you have more ups than downs this year. Thank you for sharing your struggles.
wheelingit says
You’ve been a fabulous inspiration over the years. I can’t tell you how many of your recipes I’ve enjoyed and that have helped me in my own health journey. You absolutely did the right thing to focus on your health, and I truly hope you have many, many years of time to enjoy the benefits of that. I have family members with MS and I know how difficult a journey it can be. You are a strong and amazing woman to share this on your blog.
I won’t pretend to offer any nutritional advice, but I do want to suggest another mode of travel if that’s something you are open to and want to continue do. RV (recreational vehicle) travel can be very satisfying and very accommodating to all levels of disability and health. We’ve been doing it ourselves for 7 years fulltime and have many friends, including some with MS who do the same. Your world can be as large as you want it if you take your home with you.
I wish you the very best on your journey.
Nina
Patty Donovan says
TY…all I can say is thank you, for your site and now, for your honesty. I have admired you since I first learned about your site and now admire you even more. You are an inspiration. You have been a Godsend to myself and several others I know. May you be blessed with healing.
Elana says
Thanks so much Patty.
Kathrine says
Elana,
I have been thinking all this time about what to write. Your story was lovely, honest, brave, thoughtful and spoke to me. In 2006 I was a high-flying executive with 3 young kids and I got an MS diagnosis. For years I was ok but I am now a single mom on disability raising the now teenagers and suffering through highs and lows too. Your blog and efforts mean the world to me. I wish you well and hope that that few words here help you know how much all you do is appreciated.
Elana says
Thank you Katherine. I’m touched by your sharing a bit of your story in this comment.
Ndo says
Hi Elana, long-time lurker here!
Thank you so much for sharing this private and painful portion of your journey. Your recipes and other posts have been very helpful to me as I’ve dealt with my health issues. I’m glad you are starting to move around and travel a bit more. You are such an inspiration to me and so many others. Keep blogging even as you keep taking care of yourself!!
Elana says
Ndo, thanks for moving from “lurker” to commenter, that means a lot to me, and thanks also for your support :-)
Theresa Jelliffe says
My Dearest Elana,
Thank you for your courageous sharing. God has gifted you with so much talent, love for your family, and you have glorified HIM by your work and by the love you extend to family & friends. HE is the great physician and healer. Keep leaning on HIM. You are at the top of my prayer list. Pat’s Mom.
Ann T Sheedy says
Dear Elana It is good to know all you are going thru so that all of us that care about you can pray for you and for you to be in our thoughts and hearts–you seem to be a very disciplined person so I am sure you will continue to improve with God’s help—Good luck fondly Ann Sheedy
Heidi wixom says
Dear Elana,
Wow! This post blew me away. I am so sorry for your health issues but so glad to hear that you are healing. Your courage and desire to get well holistically is an inspiration to us all.
I have been following your recipes since 2013, and I am so thankful for your work. Please know that your efforts have made a difference in my life and the many people that I have directed to your website. Your excellent in your field! I always trust your recipes, because none of them have failed me! Thank you….. Thank you… thank you….
Arlyn says
Elana…thanks for being so transparent, real and honest. I’m inspired by your strength!