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.
Melissia says
Thank you for sharing so much and for offering hope and positivity. For the last several years I have been battling a rare hereditary nerve disorder called Hereditary Nerve Pressure Palsy (which most doctors have never heard of and usually gets misdiagnosed for years as MS or CP or Fibro or “it must be in your head; are you stressed?”). It causes numbness, neuropathy, tingling, pain, weakness and other symptoms that come and go and linger. Right now my hands and feet suffer. When I have flare ups in my hands I can’t chop, cut, write, hold heavy pans, use a fork, or lift weights etc. It can be upsetting, frustrating and maddening to feel limited and to have to find ways to force yourself to stop, slow down, listen to your body. People don’t understand it; they see someone who looks well and fit and is strong and appears to do it all but that’s not always how it feels. Thanks for all you do. The significance and impact means even more understanding what you love with too.
Karen Miller says
I just read your blog about your illness and how you have had to stay close to home to rehabilitate yourself after your hospital experience. I found it so moving that you have such a positive attitude and encouraging spirit for those who are on the same road as you. We may not all have the same issues but we share the same struggles with managing diet and life. I too have celiac disease and believe some issues are a direct result of that condition.
May God continue to strengthen you in your fight.
Elana says
Thanks so much Karen!
Vicki Garland says
Dear Elana…
I am so thankful for your support to stay on a clean Paleo diet… My doctor and pharmacist suggested I look into it for many of my health issues. Discovering your recipes has helped me! My health has improved and yet, as you so poignantly pointed out, there seem to be new events every so often and we just never know what will be.
Thank you for sharing your experience over the last years. I, too, have opted to stay close to home for almost a year and stabilize myself and am finding a contentment that is new while being mindful to not feel badly or guilty for not being more participatory in a social life! My heart is with you and I will include you in my prayers. (I am also Jewish and have particularly enjoyed your holiday suggestions!)
Blessed Be~*
Michelle says
My heart goes out to you. You’re doing the best thing – resting and taking care of yourself.
Thank you for all you give on your site. I love your recipes.
:) xx
Elana says
Thanks Michelle :-)
Elizabeth says
Elana,
Thank you so much for sharing what you are going through with us. You are a great being and I know God is looking over you. I will pray that you find the answers to your situation and that God will bless you and heal you with good health. May God bless you for being such a special and wonderful being!
Best regards,
Elizabeth
Elana says
Elizabeth, thank you for your prayers and God bless you too!
Gloria says
Prayers for you. And your continued strength and determination Much love
Nicole M. says
Dear Elana,
Thank you so much for sharing from the heart. What you said about struggles not being able to be conveyed in a photo encouraged me, as everyone else’s life seems to look so well put together online compared to mine.
Your recipes have helped me so much. Two years ago I finally discovered that our 7 year old son was having emotional difficulties because of gluten sensitivity. Your almond flour chocolate cake recipe has brought so much joy and pleasure to so many of our birthdays and family gatherings!!
I pray that you will receive the answers you need, and that you will experience wonderful health. Thank you for your generosity in sharing your recipes and your life. I admire your bravery and optimism.
Kate says
Elan
Thank you very much for ‘Sharing’ your last year. What a journey for you and yours. You have given so much to so many and very precious to us all. Take care.
With love Kate
Maggie R says
I missed you and your amazing posts and am so sorry that you have been dealing with exacerbation of your MS and the Transverse Myelitis. God bless you and your dear family and best wishes for a steady recovery from your latest dificulties. Both of those diagnoses individually are such a challenge, but together so much more so.You are so determined and such an inspiration to all of us out here. Hugs and prayers
Pat says
Elana
I am so sorry for all of your troubles- you have helped so many on the road to health _ I need to work on mine more. I pray you will feel stronger – and be in better health.you have given us so much. And you are beautiful! Prayers for you.
Brigi says
Dear Elana,
My good friend who is a nutritionist has recommended your website and cookbooks when I was experiencing digestive issues. Love all of your recipes and use them all the time. This was in 2014 and signed up for your newsletter. Even created a Pinterest Board with all of your delicious recipes. I was wondering the other day what has happened that have not received any new posts from you for a while.
Thank you for your post. I am so sorry to hear about your ms, and praying for you to get well. Sending you lots of love and healing from the bottom of my heart.
God Bless, Brigi