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.
Kathy says
Have you heard about the link between MS and silver (Mercury) fillings? Do you have any of these fillings? Many people who have them removed by a qualified biological dentist have had wonderful improvement in their symptoms. I hope you will check it out (Google search) if you haven’t already.
Issara Willenskomer says
Thank you for this post Elana. My girlfriend was diagnosed with MS 3 years ago and since then we’ve became fans of you and your work. Your recipes have made a huge difference for her and myself, as I have largely adopted her paleo diet as well. I know from running my own business that it’s hard to publically share what goes on behind the scenes. Thank you for letting us in. We wish you the absolute best. – Issara
Angie Adams says
I have a hard time finding just the right words…but then I figured it out, there are no right words.
Thank you for sharing your life’s journey, a very rocky one. It reminds me to be thankful for what I have and not wa wa so much. And it is giving me the boost to finally go all the way with paleo. My body has spoken many times but I needed your story to listen.
Wishing you healing and strength and love.
Katherine M says
Thank you for sharing this! I have lupus and only found almost 100% relief/cure since I’ve found that every flare up I’ve had was caused by something “bad” that I put into my body. It started as the sun, which after 20 years for some reason no longer bothers me, the last time I used antiperspirant I ended up in the hospital for one month with three organs shutting down which led me to find that I was highly sensitive to many metals. And food. My doctor told me no sugar, grains, soy, dairy and I was so desperate for a cure and never cheated but eating was more of a chore in the beginning. I tried all different recipe sites with different diet names and it wasn’t until I discovered paleo which led me to you. You’ve made food happy again for me and I barely even know that I have lupus anymore. Thank you for doing what you do and I feel bad that I didn’t know how much you had gone through to get to where you are. Every morning I thank you because I still have your banana bread every single day when I wake up.
Bev er ly says
I had no idea you were sick. I follow your facebook daily I n have your books and have learned from you how to survive with celiac. You have given me strenght and courage to push forward when all was dark and I wasn’t able to help myself . I have learned how to travel and go on each day from reading your books recipes and social media. I hope you can continue to get well each day. God luck Elana.
Linda says
I’m just one reader/follower of many, and my comment is just another comment. But I couldn’t read and run. I wish only the best for you, health for as long as possible and forward movement always. Thankyou for sharing a piece of you xxx
Risa says
First: I knew you were CALIFORNIA grown! :D ~ me too.
Second: you have been of great service to many.
AND, Thanks for sharing. It is not easy having multiple issues and no one knows what is causing set backs. I noticed that the stress of travel, packing and such is also an issue for me. I hope your recent trip back home brings rejuvenation and health. Napa food can fix almost anything. Davis, The Bear’s bathroom… LOL! I think I am too old to be entertained there.
Here’s to Health!
Linda Rich says
Thank you so much for sharing. I’m about to try and go paleo… without cheating… and your story inspires me. Wishing you the best of health!
Barbara Helfet Cohen says
WOW Elana! What a story! Thanks for sharing! I wish you good luck, good health and much happiness for the years ahead. You have inspired & helped so many people – may you continue for many more years to come. Your recipes – along with those of Pete Evans – form the backbone of my Paleo collection. Thank you.
Julie Earnest says
You are such an inspiration to me and to others! Thank you so much for sharing. Now I know we have something else in common – Davis! (I was married under the gazebo on Putah Creek after graduating from UC Davis.) All the best to you and family, and good health, and rest, to you.