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.
ali says
thank you for sharing Elana. I was diagnosed 14 years ago and have lived the last 8 years eating clean and exercising my way to health. I run an MS support group (for 9 years) and stay positive. keep on keeping on!!
Maggie says
Elana you definitely have people that you have helped. I have PRMS. the recipes you and the spunkycoconut have posted has been a God send. I was able to stop 17 medications that’s including Gilenya. Your fans are here to support you! I am. Be blessed because you’re blessing others with your gift.
Brette says
Thanks for sharing, Elana. I’ve often thought of you and wondered how you’re doing. I love how you take care of yourself. Blessings, brette. <3
Deb Gluskin says
I’ve been following, admiring and supporting your site for years. Reading the latest is beyond amazing – very brave to share the real life day to day (especially during struggles). if its even possible, know that your community supports you EVEN MORE and will continue through all the stages that we face with autoimmune. We have your back !
Susan Gerber says
wow – thank you so much for sharing – you look beautiful in the picture – my social life is non-existent – they spiraled out of control when i was a young widow at age 47 – I’ve seen your recipes and unfortunately, I am basically allergic to everything so i just stick to the basics until i can heal. thank you for you
Teresa Fischer says
I know this is terribly difficult for you and thank you for sharing this part of your life with us. Your recipes have been a lifesaver for me and others in my circle of friends and family who no longer eat wheat. Our lives are much brighter because of the hard work and effort you have put in to developing and sharing your recipes. Thank you so much!
Sara Just says
So happy to see you improving, celebrating with a trip to Napa and sharing your candid story of recovery. You are an inspiration.
Corrie Ann Gray says
Thank you for sharing part of your story Elana. I love your site and often refer clients and friends when they are searching for gluten free options. I pray you continue to find healing strength. I don’t know if it is legal in your state, but do look into medical cannabis. Montel Williams, among others have found great success with this modality. I wish you all the best.
Charlene says
Thank you so much for making yourself vulnerable and sharing of yourself and your journey. I am grateful I do not have a major health issue at this point but I appreciate the challenge of dealing with difficult life struggles. I love your site and enjoy many of your recipes! Hope you continue blogging for many years ?
Kate says
Elana, you are a Godsend. I dare not stray from a Paleo diet and I love your recipes. I can 100% relate to your message. I was diagnosed with stage III ovarian cancer in 2009. My doctor gave me less than a year, but here I am, due to my choices to incorporate a treatment plan similar to yours, 7 years later, healthy and in remission since 2010. This cancer is notorious for coming back, so I understand your day to day uncertainty. I vowed, shortly after completing treatment, to enjoy every moment I have and not worry about tomorrow. I take extremely good care of myself and live in the moment as much as I can. May good health continue for you.