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.
Jane says
Thank you for having the courage to take what you needed for yourself and begin to heal. Time off is one of the most difficult things to do — especially for women. I think your revelation will be a catharsis for you, and I hope that you benefit greatly. I have had 30-plus years of fibromyalgia/chronic fatigue and finally found a doctor who not only believed me, but also worked with me to overcome and heal. I am currently on 4.5 mgs of low-dose naltrexone, and I strongly suggest that you look into this drug. It had been nothing short of a miracle for me. Also reading about Dr. Teri Whals (Iowa City, Iowa) will be an inspiration and help to you. She has made great strides with her MS, going from a wheel chair to riding her horse! All the best to you and continued progress! Jane
Gabriella Kortsch says
Dear Elana, Your story has moved me a great deal. Due to my work as a psychotherapist, I read a great deal in and out of my field, and one book, by neurologist David Perlmutter, MD, comes to mind. “Brainmaker: The Power of Gut Microbes to Heal and Protect Your Brain – for Life”. Briefly, he writes of patients with numerous diseases, but also of those with MS who have FULLY recovered after changing their gut microbiome. He makes no promises, nor is it necessary to see him for this. It is mainly necessary to inform yourself about why this might work. Clearly, I have no idea what you and your doctors have been working on already, BUT, if you have not already, at least make a point of giving this book a once-over.
Wishing you & your family the very best of luck!
Gabriella Kortsch
Lacy says
Dr. Perlmutter has great information regarding activation of Nrf2 within our bodies!
Karen says
I’m sorry to hear that you’ve been having a rough go and I want to thank you for being such a beacon of hope. Your honesty in posting your experiences and your determination and commitment to health and healing not only for yourself but to share with and encourage others speaks volumes about who you are. As my elders taught me to say, “You show up in a ‘good way'”.
When I first started following you I was extremely ill with no idea and no diagnosis coming forth. In time I learned I have Chronic Lyme Disease and I was fortunate to stumble on an amazing and wonderful physician. I have improved markedly and I work at regaining more health daily.
I am grateful for the progress and optimistic for the future. I’m also realistic about things that ‘may’ happen. I’ve worked hard to learn to live in and appreciate the moment, to schedule my life to reduce stress and encourage healthy eating, and to let go of those things that don’t serve me. It is difficult for those who have never experienced something such as this to understand, and that is ok. They are where they are just as I am where I am. You are where you are. I hope for you support, encouragement, love, and understanding from those who mean most to you. Blessings and thanks for all you’ve shared. I love your recipes and your grit.
Renee A Davis says
Elana,
I am so, so sorry for all that you have been through. you are truly an amazing & courageous woman. You have such a heart of compassion & genuine desire to help people get healthy.
I had posted a comment a while back & the response from you was such a blessing to me, I could feel your compassion & tenderness from you.
I will be praying for you, may God Bless you & your family abundantly.
Julie Rodgers says
Elana…thank for sharing your struggle;I wish you strength in your healing journey and thank you so much
for all your recipes.Health and Blessing to you Julie
Tami Kaminsen says
Have you tried the Autoimmune Protocol to help with MS? AIP along with Paleo eliminates so many foods that I’m kind of overwhelmed. Would love your opinion.
Stephanie says
There may be something else going on with the plane ride too. With the recirculated air, it’s not just that the oxygen is low, but also that bacteria thrive. There’s a probiotic spray you can get to take to spray your seat and the air around you that might help. Also fasting might be best with just coconut water or an electrolyte drink. Best wishes, question everything. Love your cookbooks and make your quiche all the time!
SUSAN says
Elana, MS is a truly terrifying diagnosis; how brave you have been. I am so glad that you that you have found helpful modalities, and have the financial resources to access them. I have lupus and several other autoimmune diseases, and I remember, when I was first diagnosed, over 30 years ago, reading that MS and lupus are related, and if a cure is found for one, it will also be found for the other. I started to see a doctor of traditional Chinese medicine last summer, and his acupuncture treatments are the only thing that have helped me with pain and with restoring normal function for my body in decades. I have never heard of whatever your oxygen treatment is, but it sounds like is is working well for you. Thank you for being real about your life; I get so tired of these cookie cutter perfect lives some of the foodie bloggers foist off on us… I admire you so much!
Gina Hughes says
You are an amazing individual! I don’t have the same health profile as yourself, but I have had my own struggles in life, so reading something like this just reminds me to be grateful for every day, be grateful for every loving person we have in our life, and be grateful to know people like yourself who have the ability to share eloquently little parts of yourself, which may be difficult to do, but is incredibly powerful to others … thank you … thank you! xo
Lorraine says
Elana, I feel like you are part of my family!,I know you and think of you as the Almond Flour Queen! I am always quoting you and am constantly sharing your recipes. One of my 5 year old granddaughters has just taken my copies of your books and put post it notes all over the books showing me which recipes she plans to make! You are a household legend in Stamford Connecticut! I pray you continue to heal! We are all here for you!