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.
Debbie Lunsford says
Hi Elana, Thanks for sharing your journey. I’m sure it helps others that are struggling to know we are not the only one. I’ve had CFS for six years and have had to limit my life in so many ways too. It has been difficult. I’m sure you’ve tried many things but thought I’d pass this on. I’ve done Somatic Experiencing for about 3 years and it helped me more than anything. It is a mind body healing that helps regulate the nervous system. Anyway thought I’d pass it on if it can help in any way. Blessings
Pancake Organics says
I am grateful to read your post today. Thank you for your honesty. You articulated so well the journey. I appreciate your candor about having to slow down, accept your own limits and be gentle with yourself.
Tamara says
Thank you for sharing. I am sorry you have had to go through this. The only way I can describe it, is that MS is a bitch! I was only diagnosed a few month’s ago and after some diet changes, I no longer need a walking stick but have a way to go. I am inspired by your approach of taking time-out & letting yourself heal – I should follow suit myself. Blessings to you.
Sharon C says
Elana, thank you so much for being brave and open enough to share this ‘Piece of You’ with us. You are such an inspiration and I take my hat off to you. Keep on fighting my prayers are with you. I was diagnosed with Fibromyalgia in 2014 and have not said much about it in general – you have given me hope .
Annemieke says
Elana, you are an inspiration – not just in your willpower and dedication to remain healthy, active and happy, but to want to help others feel that way too. Thanks for sharing your story, and I’m wishing you the best of times ahead. I’m going to bake something from one of your amazing recipes today to celebrate your bravery and kindness!
anna says
Jesus knows……Jesus cares.
” When I am afraid, I put my trust in You.” Psalm 56:3
Colleen says
I’m sorry to read of your struggles. You have been a wonderful celiac resource for me and my clients/patients. I’m not sure if you have sought alternative practitioners throughout your healing but there is hope. I spent many years with health issues, mostly digestive and then over 12 years ago my daughter was diagnosed with cella so disease. Through trial and error, I tried many different avenues of healing. When I found that helped was a whole food diet, homeopathics and specialized kinesiology. I became a registered holistic nutritionist because I was so passionate about helping my daughter and others. I then went on to study further why disease develops and what to do to heal the body (which takes time and patience). Check out Unda numbers which are from Begium and are truly amazing for healing deeply within the body on a cellular/mitochondria level. I’m sure there is a doctor or practitioner in your area that uses these products. They are gentle but produce amazing results. If you want more information, I’d be happy to help as well. Ideally, you want someone who can read your body to meet you where you’re at to begin healing. Good luck and all the best to you. May you be blessed and protected on your journey of healing.
Cheryl says
Hi Elana
I was diagnosed with ms in late 2001 it answered a lot of questions on why I felt like I did, I have had symptoms for many years I have learnt that ms is silent & unpredictable, no one knows what it’s like people say to me you look so well & that maybe the case but it’s not what’s going on in my body.
Thanks for sharing your story Elana stay well.
Mercy says
Elana, I knew about the MS but not the Hashi’s. I started using your recipes in 2012 when I was diagnosed with Hashi’s. I am even more thankful for your work, knowing the suffering you have endured while still helping others. I haven’t been able to afford eating right, lately, which has an effect, as you know…but your recipes are in my forever box and I treasure them, because they represent the good periods…the times when I am doing well and life is more vibrant; when I am me again. Love <3
Karen Chandler says
Thank you for sharing more of your life and health struggles with us, Elana. I am so sorry to read that you became severely ill from plane travel. I completely understand the set backs brought on from various exposures during travel. I am mostly well now, but was incapacitated for many years from severe chronic fatigue syndrome after mono, improperly treated Hashimotos, and chronic migraines. I still need a few weeks to recover after plane travel and long car trips. I have been gluten-free for 12 years and have enjoyed many recipes from your books. And I always look forward to reading your blog posts! Thank you for your dedication and hard work to develop delicious recipes. You have helped many people cope with celiac disease and other dietary challenges!