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.
Kerry says
Thank you so much for sharing your frustrating health journey. I’m so sorry you have these scary setbacks, that is a lot to handle emotionally, mentally and physically. I wish you all the Heath and strength in the world.
Thanks again for sharing. ❤️
Kerry says
Btw: you have tremendously helped me thru my own food/autoimmune struggle! Thanks thanks thanks!!! And people still think I’m crazy and/or making it up as I go along, because the symptoms vary week to week.
Suz says
First Elana, I want to thank you for your delicious recipes which I use often, and which help me to stay mostly wheat-free, dairy-free, and sugar-free. (Sometimes I’m bad or lazy, and I cheat)
Second, I want to thank you for sharing yourself and your struggles with us. I, too, have just taken a year off due to illness. It’s difficult to not be able to be ourselves and do what we’ve always done, to no longer be energetic and competent, when one is sick. But if we want to be well, and be there for the ones we love, we have to put our health first. My husband often tells me that I am the only person I can’t live without, so I better take care of me. lol
I was diagnosed in 2005 with GERD, Hashimoto’s and Primary Biliary Cholangitis all on the same day! Not my best day. Then, in 2007, diagnosed with RA markers, Gallbladder disease and Ulcerative Colitis.
Your recipes always work, and are a major part of my diet. I’m sure it’s why I have felt better than I used to . (the illness was caused by inulin in Stevia that was not listed on the label!! It took a long time to find out, and I only did so because the newer bottles of this brand of Stevia now have inulin listed as an ingredient. It’s been 2 months since I stopped using the stevia ( switched to unpasteurized honey as my sweetener) and I’m feeling much better each day, thankfully.
My hope is that you will return to better health. Thank you for being an inspiration. Take care.
Yuen Lee says
Thank you so much for sharing your life with us, it is truly appreciated. By sharing, you have given us a huge lift especially for those who are close to giving up. I had a friend who was so disabilitated by a disease, the doctors gave her only a 10% chance of full recovery. Instead of fighting, she gave up. I wouldn’t know what I would have done in her place, but if she could have read what you’ve shared of your life, maybe…..
Jersey Girl says
Elana, thank you for sharing this. My life is difficult dealing with my son’s autism for the past 10 years. Your recipes have helped him tremendously with his gut issues. I’m so thankful for your helpful blog and delicious recipes. Stay healthy! We love you!
Linda Corsetti says
Hi Elana, I am sorry to hear about your MS event. Do you have both Celiac and MS?
I have had MS since 1992 and use this book as my Bible: It was published in 1995.; not sure if you can get it but the title is The Brain Wellness Plan by Dr. Jay Lombard and Carl Germano. The Medical field is just recommending some of the supplements I have been taking for 15 years thanks to The Brain Wellness Plan.
I would love to hear from you.
Julie says
Thank you, Elana. Your story helps me understand what you and so many are going through. A dear friend of ours once told me that ” we don’t know what the future holds, but we know Who holds the future”. You take care, get the rest you need.
Debbie says
Elana I speak Shaloam over your entire body from the top of your head to the tips of your toes. May the God who heals speak His blessing over you and bring you peace dear one., clarity of mind and resounding Joy. Hugs. Debbie L
Heather C says
Perhaps paradoxically, it is this kind of authenticity and honesty that is more uplifting for me than any neat, tidy, sexy image painted on social media.
I have been reading EP for years because of celiac disease and chronic illness. Now, as a diagnosis of MS becomes a possibility, it is so frustrating to read things that seem to say, “Do what I do, and you can live well with this condition, too” even as I struggle to get out of bed or do very basic things.
Hearing that it is up-and-down even for those people who totally have their lives together…well, it’s encouraging to me. It helps me to blame myself a little less.
I’m so sorry that this has been happening for you. But thank you for sharing it with me.
pia says
I agree.
Thank you!
Newly diagnosed. Mind blown as well.
Kath says
I am so sorry to hear about what you’ve been going through. I feel so blessed to have discovered your blog and your books. They have helped me tremendously. Praying that you’ll be able to build your health back soon.
Cass Watters says
I have just begun to move away from wheat and other grains and your books recipes and posts are precious to me, especially since so many of your recipes fit my semi-kosher practices. You are on my personal mi sheberach list. I wish for you a refuah shlemah, and may you walk from strength to strength.