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.
Gayle says
Thanks for sharing. Sending healing thoughts and blessings your way!
Terry T says
Thank you for sharing, Elana. I’ve enjoyed your recipes, especially the Paleo Cooking ones. I see others have offered advice with what has worked for them. We are all different and our bodies respond differently. I encourage you to check out Low Dose Naltrexone (LDN). You can get additional info from Skip Lentz in Boca Raton Florida. Skip has a compounding pharmacy and has MS. I am using LDN for fibromyalgia and it seems to help.Please message me if you desire additional information. Prayers being sent for your health.
Bettina Moore says
Elana, I have celiac disease and 2014 was a challenging year for me also. I started to have numbness and tingling in my feet, worse in my left and my legs became so heavy I could barely walk. For months the doctors focused on Neuro problems thinking MS and other disorders. I had MRIs, dopplers, CT, and no one could figure it out. Ultimately I could no longer walk more than a few feet and the pain was horrible. A cardiologist finally found out I had arterial blood clots. He placed a Cath down my artery and dripped Tpa (a clot dissolver) until I got some circulation back and now I have some collateral circulation that has helped. Turns out there is some correlation between celiac and clotting disorders. The 6 months it took to diagnose and treat me left me with a permanent disability and pain. My point is I love your blog and I consider you a strong, inspiring role model and I hope that helps you in some way. I value your postings, recipes and positive attitude. Survival is all about attitude so I salute you and hope you can carry on. ?
Rebecca Montgomery says
Elana Several years ago I found your website since then I have shared it with many people because I have found that your recipes are delicious but not complicated like some other gluten-free recipes can be . I am sorry to hear about your health struggles it’s good that you were able to take a break sometimes that’s what we need to do . I will pray for your continued strength and healing .
Katrina says
Thank you for sharing this. I have followed you/your blog since about 2008 or so. And I just think the world of you. Out of nowhere, in 2012, I was DX with MS (unfortunately, it runs in my family). Have loved you even more since then. Sad to hear what you’ve been dealing with this last year or so. Glad to hear it’s a bit better and I will hope and pray it continues to get better. You certainly have a perfect knack for sharing what works for you and your health and I have sure appreciated it and loved many of your recipes! <3
Marilyn says
Elana: it takes courage to bare your soul and I am sure your story gives strength to many. It seems each of us on this journey on earth have many life lessons to learn and they are varied, indeed. God Bless You…..you seem to have an open mind so I am sure that as you listen, learn and practice you will find the health answers your body needs.
Lorraine says
Elana,
I love, love, LOVE your recipes. It is amazing to me that you find the energy and time to develop your recipes and put them on this website, given everything you are going through. I am a physical therapist, so I can really empathize with your struggle with MS. I’ve worked with many patients who face this disease day in and day out. I also am an (almost) 5 yr breast cancer survivor, so I personally understand the strain a significant illness places upon you. You inspire me. Thank you.
Best,
Lorraine
December Long says
Your courage to be vulnerable is so powerful, Elana. Thank you for being willing to share yourself. Gives hope to those of us who struggle and gives permission to be real with our own hearts. I love how Brene Brown frames it – “Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness”
Paula says
Reading your story and all the comments, it is evident that your influence has touched so many, myself included. I am in awe of the strength, determination and perseverance you demonstrate on a daily basis to maintain your health. Your journey reminds me of what’s important in life and for that, I thank you.
Michele Spring says
Oh Elana – I knew you weren’t feeling well but had no idea the extent of what you were going through! I think of you all the time and had I known I would have stopped by with chicken stock and read you historical fiction novels until you screamed for me to leave :-) I admire your bravery and honesty more than you could know and am so inspired by you. I hope someday you find the answers you need. If you ever want an ear to listen to your woes you know how to find me!