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.
tracie eliot says
Hi Elana! I have followed you for years, you are a blessing! I am a 46 year old mother and have my own autoimmune and health problems which led me to your site. Thank you for so much for sharing, it really helps me, looking at your pics you seem to be busting with energy, I had no idea how much you have struggling. I have to rest so much, unable to carry on like most mothers with activities. Even vacuuming is a huge effort! I understand having to withdrew from activity and the guilt! One example is having to cancel much needed girl hiking time with my very fit friend due to exhaustion. People might not understand but rest comes first! My Rheumatologist told me to even be careful not to let my hubby drain me and to speak up when I need my rest. Seems like you have a supportive husband like me! God Bless!
Lauren says
Elana,
I am just wondering if you have ever been tested for Lyme disease? I’m sure this isn’t the first time you have heard this but a very prominent Dr., Dr. Klinghardt, said every one of his MS patient when having their brains examined, Lyme disease was found. It is very prevalent all over the country. Also, because you had mentioned having major flares after flying, I have read that Lyme patients also have this issue. It is just a thought, and there are many tests for it that are not accurate. Many people have been diagnosed with MS only to years later ind out its actually Lyme.
Elana says
Thanks Lauren, I went to a Lyme literate doctor who ruled this out quite some time ago.
Mardi Spitzer says
If you were tested a long time ago for Lyme’s, the tests now are much more accurate. A friend’s daughter also was tested years ago and nothing showed up. Last year she tested positive with the newer, more sensitive testing. Just a thought.
My husband has numerous health challenges as a result of an usual blood cancer…having a compromised immune system has lead to so many challenges. I am so very sorry that you, and your whole family have to go through this. May tomorrow be a better day…and may your “speed bumps” be smaller. Shabbat Shalom
Angela says
I somehow missed your post when it came out – but my goodness, I had no idea how much you went through because your blog always is so awesome and inspirational. You really rock, young lady! In spite of all you are suffering you still keep life going.
It takes a special kind of courage to share your private life so that others may benefit. I don’t think I ever commented on your blog before, but have been reading it for a long time now an have been making your outstandingly delicious matzo balls soup countless times over, as well as other awesome recipes.
Congratulations on our recent trip and being able to enjoy it!
If you ever come to Southern Oregon, let me know! :)
Sandra Brown says
Elana, I want to shout that your courage, dedication and spirited confronting of the multiple health issues you face is beyond inspiring. Your wisdom in dialing back your blog, much noticed, was confirmation of your personal priority for healing of self for your family, and to allow you to continue to help others in their unpredictable life journeys. Dazzling life path! So happy you feel better and are back with us.
Bill Styler says
Your story is moving and inspiring. Writing about your trip through Napa and Davis (my hometown, as well) sounded cathartic to me when I first read your column after the trip. I am homesick, at times, and the photo of your family enjoying the gathering at Osteria Fasulo was heartwarming. I did laugh (out loud) at the comment on Instagram. Sometimes reconnecting with family and your roots are powerful medicine. Best wishes to you and may all the good vibes you deserve surround you.
Ron Grantz says
Hi Elana. We never know what’s in store for us any day. You’ve made some remarkable progress and I hope that you continue to do so. May God be with you in your journey. Thanks for sharing your story.
Chaya says
Dear respected, cherished and loved Elana,
I have followed your site for many years. Your recipes have always been successful for me. You are a person with a huge heart and love for your fellow human. You have brought comfort to thousands over the years – emotionally and gastronomically. Celiac runs in the family so your books are our recipe bibles and your personal blogs are a strength to us. Now that we are living in Israel, your recipes will have a whole new audience. May you be blessed with a refuah shlaima (perfect healing in Hebrew) strength, courage and joyous life. You are loved xxxxxxxooooo
Elana says
Chaya, Toda rabah!
Violette says
Bless you sweet spirit, you have demonstrated extraordinary strength and courage in dealing with your health issues. I am praying for your highest and greatest good and improvement in your health.
Elana’s Pantry was my first and favorite site since changing to a grain-free life style. Your posts continue to provide wonderful recipes. You are a gracious, gentle and delightful woman many would wish to emulate. I sense you are an, “old soul” here to teach others a different way of life.
AmyKRO says
you’re so right — it’s easy to look at photos online & assume that other people are living “charmed lives”. everything looks picture-perfect…
thank you for sharing your struggles. giving thought to other peoples’ problems is very helpful. it enables us to better put our own problems into perspective.
Kären Ahern says
Elana, glad you are getting better. I have MCS, always get very ill after flying, right after and end up with a virus, bronchitis, fever, feel horrid for rest of trip. Now I take care of myself and refuse to fly. We rent non-toxic beach homes, stay home in our garden and PNW home or we have had an RV we take to the ocean. I consider myself lucky and if I never get to Europe as planes are toxic, people wear too may scents, etc., ….it is OK, health comes first. Keep healing.
I recommend your recipes and website to everyone I meet. Thank you for your great work.
Kena Elizabeth says
Thank you so much for sharing. My troubles to stay healthy seem to mirror your day to day choices to keep pressing toward wellness. This week I got more negative results with my autoimmune problem with large amounts of skin outbreaks. Thankyou for helping me understand my world has to become smaller and more directed what will help me become one day closer to wellness:) I had to cancel a plane trip to Florida because of germs that could be harmful to my body. Thank you again for sharing and helping us all stay gluten free each day without missing flavor in out foods.