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.
Suzanne says
Elana – I had no idea that you suffered such a flare up this past year, but I have certainly missed your presence online. I am thankful you are healing. I will be saying a Mi Sheberach on your behalf for your continued healing.
Connie says
Thank you for sharing………you are right, we tend to think people like you have no worries and always look fabulous. I will keep you in my prayers. I enjoy your site and your recipes. Have you heard of Dr. Terry Wahls? She is from my state of Iowa and has healed herself of MS through her diet and has a book. Just wondered if you had………..may God keep you blessed………………and thank you for what you do.
Leah Golberstein says
Elana, thank you for sharing yourself so fully. You are an inspiration to me and I have benefited from your posts and recipes.
All best wishes for a Refuah Sheleimah.
Shabbat shalom.
Angela Taylor says
I have been subscribed to your emails for a couple of years and never made a comment but I have been reading them and been grateful for your recipes. I sincerely thank you for sharing your life with us and what you are still going through. My Prayers are going up for you . Only very special people suffer as you have and with your suffering it has brought out a wonderful soul . God knows what he is doing. Trust him.
I pray for a recovery for a normal pain free life for you, keep going and never give in, as you have proven you won’t. Thank you for your inspiration and making us stop and think when we get a few twinges.
Mearced says
So thankful for your transparency. Yes, so many times, the online health gurus look so perfect and I feel so imperfect and flawed. I’ve also had debilitating diagnoses for years and have been fighting my way back to health. It’s somehow comforting to know that others have been dealing with similar issues – letting work and social activities pass on by to focus on health and rebuilding. I’m truly sorry that you’ve had to be on this road but thank you so for sharing!
Diane Eblin says
Elana I’m so sorry you’ve been through all of this. MS can be so damn unpredictable. I see it in Scott. It seems you’re on the up slope and I hope that is true and keep moving in that direction. I think about you often and how much you have had a positive influence for our family and so many others. If there is ever anything we can do please ask. If you make it back out to CA let me know. I’m in Santa Monica and will be traveling to Davis a lot since Brad will be there this fall equipped with your cookbooks in hand! Went there last weekend for the first time. Love it. Sending you a lot of love.
Ginger Deverell says
Thank you from my whole heart for sharing Elana. I think so many of us think everything is perfect for others, especially with social media showing it that way, and I just want to say my heart goes to you and the pain and challenges you’re navigating. I have health challenges and know all about the ups and downs and the retreating from the rest of the world and feeling misunderstood or judged. I’m touched and inspired by your honesty, and send you lots of positive energy for wellness. xo
Christy K. says
Elana I have followed you for years and I too am an MS survivor. Thanks for sharing your story so that others may not feel alone and that the world will learn more about this ass-kicking disease that just does not let up. I wish you wellness. I wish happiness. I wish you the best health possible inspite of the circumstances. I do believe we can still heal from this disease through diet, exercise, Chinese medicine, large doses of nature and the support of the people we love.
Linda says
I can’t tell you how much I appreciate your taking your time to help other people with their health problems when you have had such a struggle with your own health. When I was diagnosed with leaky gut a few years ago, I was put on a very strict diet to curb inflammation and food allergies. At the same time I was struggling with thyroid problems, and at the time it just seemed that I had more than I could cope with to get to a point where I had enough energy to get out of bed in the morning. I realize that my problems are small compared with your struggles and you are an inspiration to me to continue on the path of healthy eating and taking care of myself. Thank you for being there and continuing to inspire all of us in our journey.
Sarah says
Elana,
What a struggle you have had . Thank you for sharing it … we are all human here and every one of us has something we are improving/changing/battling. Thanks for being open, it will encourage us to be the same with our friends and get lots of support!
I am sure you will get better.
Kathy says
Please have yourself tested for Lyme Disease and related conditions. A regular test by your doctor will not be of much good. There is an osteopath in Denver who is an expert in this field. Check out the Sound Clinic. My daughter who is 25 has suffered for years with all kinds of things. She was just diagnosed and is begin treated there. It is worth a try at least. Otherwise, your problems may continue to get worse IF this is the cause. Feel free to contact me privately if you want to talk about it more.
Elana says
Thanks Kathy! I was tested by a Lyme literate doctor and thankfully have this base covered. I really appreciate your comment as it may help others.