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.
Zee Habibi says
Thank you
There is some research being done with genetics, but not sure if it is helpful. I will send anything relevant that I see to you.
I am hoping that there is a cure soon for this horrible MS.
Be well Elana. You are loved. You have a wonderful family.
Zee Habibi
Kris says
I admire your courage..your character…and you sharing your story. I wish you God’s love and strength moving forward with your journey. I love your blog, and have made several of your mouth watering yummy recipes for my family. Thank you so much for being so open…..you have given me courage too. Hugs and warm wishes always to you…
Kate says
Dear Elana,
I’ve been reading your blog since 2008 and I can’t tell you how many people I’ve recommended it to for recipes and general healthy lifestyle tips. I know it’s rare for you to share your personal struggles on the blog, but I am very grateful you are sharing this piece.
It is hard to understand what someone’s life is outside of a beautiful blog or lovely instagram pictures. It’s all too easy to think their life is perfect and they have no struggles. But I have yet to meet a blogger who doesn’t struggle with this polished perception. It’s hard to be honest and transparent while maintaining a sense of privacy and positivity. You always seem to find that balance, given the time and space needed to sort through it all.
Wishing you and your family the very best and please keep us posted :)
Kate
Linda says
May you be filled with Loving Kindness
May you be safe and protected
May you be healthy and strong
May you take care of yourself joyfully
<3 Linda
thank you for all that you share
Shari says
Refuah shlema, Elana. Have you looked into the Autoimmune Protocol by Dr. Sarah Ballantyne, PhD.
Thank you for all your recipes so freely shared. They were live-savers when I first started my Paleo lifestyle.
Nana says
Elana—Thank you for your delicious recipes and all of your posts. Here are some thoughts about your illness- Have you tried Electrodermal/Bioenergetic testing? It is amazing what you can find out and how a person can be helped. Have you tested for mold in your house especially in a finished basement or undetected leaks behind the refrigerator or inside walls? I read that mold as well as lyme are neurotoxins. Heavy metals have been said to cause major health issues, also. http://www.klinghardtacademy.com/images/stories/neurotoxin/NeurotoxinProtocol_Jan06.pdf Have you been checked by a biological holistic dentist? Many sources of illness originate in the mouth, so I’m told. There are many interesting articles about chronic illness found here – http://betterhealthguy.com/ Elana, I wish for you the best of health and lots of joy.
Mary Bangert says
God has seen you this far in life and will see you through what ever you are going through, your trust in him inspires and helps us realize he is always there for us. My husband was diagnoised with diabetes 2 and you have been a blessing in our life for I have bought your cook book and it is helping keep my husband in check thank you and may God bless you for your knowledge to help others
Joan S Sidney says
Hi Elana,
Thank you for your openness. I’m happy you’re taking care of yourself though I wish you didn’t have so many health challenges. Bravo for PT (I also go 3 times a week), OT (once a week), swimming (4-7 times for 14-18 laps), adaptive skiing, sailing, therapeutic riding. I’ve had MS since my first exacerbation in Oct. 1965. It’s an ongoing challenge but my husband of 40+ years helps me manage.
Please checkout my website: http://www.joanseligersidney.org . Let me know if you’d like my book (s). I’ve been loving your recipes online.
Be well.
Joan
Janet says
Elana, I just found your blog “by accident” while looking for information about arrowroot powder. I don’t believe it was an “accident” at all. My diagnosis of Sjogren’s and my husband’s of leukemia have set us on this journey of healing and health for the past 3 years. It is hard to face my limitations. Reading your story about your own limitations and letting to in order to heal is a message I truly needed to hear today – an answer to my prayer for direction. Thank you! Your strength shines brightly through your vulnerability to light the way for others. Deeply grateful!
sandy starkman says
Refuah shelamah- wishing you a full recovery and healing- Thx for sharing- impt that others know they need to take care of themselves, and thx for taking such great care of us- pls take the time you need to heal yourself with your family’s help and assistance of the medical community too-
Matty says
You sharing is an inspiration. I will keep you in my prayers. You are a shining light and never underestimate the love that’s coming your way, or the help you’ve brought others with your incredible recipes. Nothing wrong with Slowing down, all best wishes.
Jenny Butt says
You have been recent discovery for me since i am new to Paleo. You are my favorite blogger and I use you recipes more than any other. You have alluded to health problems since i have been following you. I hope you know what an inspiration you are to many people. I marvel at your inner strength and wish you well.
Amanda says
Thank you for sharing your story of strength, hope and resiliency. You touch so many people’s lives and make us feel better even in your darkest times. You have such a gift and I’m so grateful that you continue to share yourself with the world.
Alisa says
Sending you love, healing, and a big thank you for being so open about your struggles. You help millions Elana, and have always been an inspiration to me.