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.
Tammy H says
Elana, I found your site shortly after my diagnosis of Rheumatoid Arthritis in 2009. Thank you for sharing this part of your story. Your struggles and courage in the face of this disease is instrumental in so many ways. One of the hardest things I needed to do was realize my life as I knew it was no longer and to do my best to figure out and embrace my changed self. And to give myself permission to say no and to learn to listen to my body. It is a mourning we all go through, truly. Thank you for your bravery. I wish you continued recovery, good health, and strength to continue doing what you love most!
Stephie N. says
I can’t express to you how much I needed to hear this right now, as my problems are different, but I am on a very similar path. All that pressure to do, and to maintain The work you’ve started, to withdraw and simply take care of yourself must have been extremely challenging. You gave me the confirmation I need to say no for the rest of this year is well. Thanks for being honest and open, sometimes that single ingredient has more effect then 1000 helpful practical tips. We need to hear real.
Michelle says
Elana, thank you for sharing part of your life with so many of us and for your hard work creating these fabulous recipes. You are such a big help! I am sad to hear you have gone through such a horrendous time and am glad to hear you’ve made progress. I pray your health will be restored and you will be completely healed. May you have life and health even more than ever.
Veronica says
Elana, have you read anything about the German physician Dr. Max Gerson, M.D.? In the last nearly 100 years no one has come close to the success rate of his Gerson therapy … for all these conditions. The basis of their therapy is organic vegetable juices … made with a juice press (not the inexpensive juicers). I totally believe you can get healthy … and that you will.
Lisa Evanoff says
Praying for you!
Ellen says
Sending healing thoughts your way. Your determination to be healthy is inspirational. To say no to the daily grind and focus solely on repairing oneself can be challenging. I am glad that your hard work has paid off. I hope you continue to be healthy. And thanks for your great website. I have followed it since the beginning. We use your hamantashen recipe each year!
Joelle says
I found your site last year when I was looking up ways to treat my own MS with diet. I was so thrilled at your recipes and insights. This post obviously touched home with me. I, too, have struggled. My children are little (4 &6) and it takes every inch of me to slow down so I can have a chance against this disease (I was diagnosed in 2003 when I was 20).
Thank you for your honesty and your inspiration. I will carry it with me.
Be Well,
Joelle
Beth says
Elana, Thank you for sharing your ups and downs with us. You have provided so many wonderful recipes for us. You are inspiration to me.
Keep taking care of yourself, and doing what you need to do.
Erin says
Elena, Thank you for sharing. When what you ingest is vital to your well-being and I for one, have not had the will to be disciplined, it is people like you and many others and your stories, that I look to for inspiration. This must have been a most difficult year for you and I am truly sorry you had to endure it.
All my best for your future!
Dr. Patricia Kane says
Elana, I would like so much to help you with the therapy I developed. Membrane Stabilizing therapy is described on our website at http://www.neurolipid.org If you are interested we can find a physician in your area to assist you in the healing process. Dr. Patricia Kane