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.
Elizabeth says
Thank you for sharing your story, Elana! I’m so sorry you’ve gone so through so much, especially with transverse myelitis. A few years ago I had a sudden onset movement disorder that was initially thought to be a “light” version of TM. Fast forward a few years and it is a different rare neuro-autoimmune mess, but I have found that mold seems to be a factor and symptoms have improved quite a bit with treatment for Chronic Inflammatory Response Syndrome (CIRS). See survivingmold.com for more information. There is a genetic component to CIRS and then the environmental component of mold or other biotoxin exposure. Given your worsening in 2014, I wonder if mold growth in and around Boulder post flood could be a factor. Also DIA is known to have a mold problem. I wonder if that could be part of the worsening of symptoms when traveling? There are two docs in Boulder who treat CIRS – Dr. Jill Carnahan and Dr. Dorninger. In case of interest, the TMA will host a symposium in Denver in the fall: https://myelitis.org/event/2016-rnds/
Elana says
Elana, sharing your recipes and pantry you have been such a source of information and delicious, healthy, safe food in my home. I refer people to your site often, and refer to it myself anytime I need to make something delicious that is also gluten-free. Your story really touched my heart- and I want to thank you for all you share, all the hard work in maintaining your health again and again, and for being a bright light to so many. I am raising my kids in your home-town (had no idea you were from here!). Know that your work is helping a boy with IBS feel healthy and strong enough to ride those greenbelts to school and participate in life. Now, can I offer you something? An affirmation from Louise Hay: “I love and approve of myself.” Now, to make those delicious gluten free donuts for a friend who just lost her Dad (a very dear man who has been a big giver and presence in your hometown). See all the ways your work helps heal?
Margaret Franklyn says
Hi Elena I hope all your todays will be good days.A few days ago while on my journey to read all things pertaining to food as medicine, I found a recipe of yours and followed it to your site.I am thrilled to have discovered your recipes,thank you for doing the experimentation for me?Best wishes and all that,s good and healthy to you and your family.
Valerie says
Thank you, Elana. I imagine everyone who’s found your work is like me, healing through diet. And I’m sure with many other modalities as well. I come back to your site and your books over and over. Thanks for sharing your passion and your journey. You have lots of company.
liz campbell says
I am a new student. thank you for the opportunity. cancer survivor
Alchemille says
Elana,
I know it took a lot of courage to share these words of struggle, pain & suffering with the rest of us. I hope and pray that things will get better for you. I have learned that nothing is impossible and everything starts with a dream…Closely followed by a strong will and a positive mindset.
Many blessings to you,
Jennifer/Alchemille
Melissa says
Bless you Elana! You are dearly loved and appreciated. May you rest in His unfailing love for you. I am praying for your healing. Thank you for serving and blessing us with your many gifts!!
Elisa Cetera says
Thank you both for sharing yourself, and your talent. I’m newly diagnosed with both Diabetes and Hashimotos, and fall outside the norm in that I’m underweight and tend towards hyper symptoms. Well, it seems I’m not the norm, as most things I’ve found seem geared towards losing weight. I’m committed to living a lifestyle that promotes health, but also don’t want to give up so many of my favorite foods. You have helped show me that I can do both. I ordered some of your cookbooks, and expect to be ordering more. Can’t wait for them to arrive so I can master them, and move forward to a healthier life. And happily, my husband is not only supportive of the new diet, but happy to be making the switch with me.
Lee Torrence says
Dear Elana,
I was introduced to one of your dessert books 5 years ago after struggling with chronic pain from inflammation caused by Celiac (I was never REALLY diagnosed but my naturopath never saw a higher number than mine in my test results for gluten sensitivity). I found your posts very inspirational and only found out you had MS half way through. But, what I am writing is to let you know that like the others, I am with you and have appreciated you sharing not only your delicious recipes and expertise, but yourself. Peace be with you in your journey to health.
Gail says
Elana bless you for having the strength to enjoy the moment not just for you but for your family, those memories are priceless, just take the time each day and get the rest, eat correctly, take your meds & do the theraphy you need so it doesn’t set you back so hard when you get home your back in the hospital. I have SLE & CNS Lupus along with Raynaud’s disease & a dissected cranial nerve I live with every day is a challenge, people don’t understand because now I look better (thinner) on the outside but I the symptoms are still there & some days worst if I’m due for my next infusion. But I’d like to say thank you because changing my diet & eating non-inflation foods such as dairy, gluten, peanuts & things my body can’t handle like process foods has helped tremendously, for that sights like yours have been a God send. I thank you so much. Stay strong & God Bless you , I’ll say a special prayer for you tonight at church.
Judith Hodges says
Been visiting your site in search of the best alternatives and comfort for so long….So sad to hear of your deep struggle and proud of your utter willingness to bend and learn and grow and evolve. Thank you for sharing in such transparent and loving way. Big Hugs, Elana dear.
I too have had enigmatic health challenges and recently found a VERY wise and wonderful book by Ramiel Nagel, “Cure Tooth Decay- Remineralize Cavities and Repair your Teeth Naturally with Good Food”. After reading with some trepidation -decided to implement numerous suggestions and wow. Big changes ++. You *may* find it interesting. His approach makes huge sense of numerous seemingly unrelated issues. Packed with deep insight.
Follow your quiet voice within. The answers will come, they DO exist.
Many, many thanks for your loving, kind support and wisdom like an angel.