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.
Christine Robertson says
Elana, Thank you for sharing your story. I have been relying on your recipes more and more to keep my SIBO under raps. You do make a huge difference and your delicious recipes are treasured. I have recently found myself giving up grains and refined carbs and have been relying on your almond flour recipes. Your chocolate chip cookies have become a regular hit at family gatherings. Every time one of your mouth- watering recipes shows up on my FB, I will send you healthy thoughts!!
Connie Carver says
Thank you Elana, for sharing your journey. It is appreciated by all.
Jenna says
I’ve also taken most of the last year off to heal. My world has become smaller and my focus narrowed to what I need to look after myself. It has been a challenge but full of amazing lessons. Your post inspires me to share more of my journey too. Thank you!
Joy D says
You are handling this with such grace and dignity when I am sure you would like to scream out loud “why me!” I hope a cure or treatment is found so that you can bounce your grandkids kids on your knee. Best wishes Elana. (and btw if it weren’t for your spectacular recipes i think my physical condition would not be as good as it is today – thank you)
Kim Donavan says
So happy to hear that you are taking care of you, and still finding a way to be of service to others. Much love and energy being sent to you by myself and so many, I am sure of it!
barbara tobar says
Elana thank you for sharing such private moments…when i see all you are going through it makes my own problems seem so trivial…thank you for all your great reciepes..ive been working hard to go total paleo but im still weak..come this weekend it is my goal date to go extreme paleo…im sure with all your books,advice menus i should be good
Monika says
Hi Elana! Have you heard of Dr Terry Wahles? She has progressive MS & decided to work out what feeds healthy mitochondria. She’s on tedex, YouTube. Worth a google
Patricia Espinoza says
Elana, Thank you for sharing “a-piece-of-me”. It means a lot to know this about you, and that your journey continues to lead you toward the best health possible. It is more than encouraging! Your recipes have brought me into a Paleo world, and helped me say goodbye to wheat! And now, with that victory behind me, I’m restricting my diet even more so that I can find my triggers to the high TPOs I’ve continued to have after a diagnosis of Hashimoto’s. Changing lifestyle and eating habits has been really hard, and I continue to struggle. Taking one day at a time, preparing one meal at a time with many of your wonderful recipes is bringing me closer to better health. Thank you
Anne M. says
Dearest Elana, Sweet friend of more than four decades,
So happy to read of your journey of healing, so sadly sobered to read of the tough road you’ve traveled these past few years. I hope your humor, wisdom, charm, and energy along with the love of the three men in your life have sustained you. So glad you got to drink some Putah Creek Cabernet with your family to celebrate your Dad’s 80th. :-).
Love you,
Anne
Jessica Malionek says
This made me cry, Elana. Thank you for your brave honesty. Wishing you strength and courage on your journey. We are an autoimmune/cancer/stress family and this helps. It does. XO