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.
Cassie says
Dear Elana,
Thank you for sharing your experience. You’ve had a rough year, and it sounds like it’s been a challenging process to try to figure out exactly what is triggering your symptoms. Hang in there. You are getting better bit by bit, it sounds like. Your trip to Napa is proof of that. It’s wonderful that you got to celebrate your dad’s birthday with him. Thank you for the recipes you painstakingly create, test, refine and share. You absolutely are of service. You chose a wonderful way to distract and move yourself forward in the face of the diagnosis of MS. Thank you again, and very best wishes and thoughts to you.
Stacie says
Hi Elana,I found you site a few years ago when I started to see a naturopath. She was ok but I found out I had leaky gut and was allergic to dairy and a few other things that I didn’t know about. At that time I was also going through the change at 53. I am now 54 and I’ve had to battle the normal changing symptoms plus I started on paleo a few years ago also. My journey has been interesting. If you can look up Christiane Northrup, MD Woman’s Health, (holistic health) she defies growing older with different diseases in a whole new light. Our minds are very powerful to overcome just about anything! Your diagnosis is not necessarily the worst.
You’ve saved me with all your recipes! My family and friends love the things I make from your recipes. The newest one is the Creamy Ricotta Dip which is awesome! My Mom just turned 89 and my Mother-in-Law turned 86 years young. They still live alone in their homes and still drive and go different places. We are blessed to have them still in our lives! They have taught me to live every day to the fullest and to treat everyone as you would want to be treated! Congratulations on your Dad’s 80th Birthday!
You have been an inspiration to me with all your wonderful recipes! All my best to you and your family!
Sarah says
Elana.
Thank you for sharing so much of yourself with the world. I would love to especially thank you for this post though. I have discovered in my own battle with chronic illness & pain, that the most difficult balance we must find is the one between feeling too much, and forcing ourselves to feel too little. Many of us face a lifetime that contains a lot pain, and we all must find a way to live so that we do not let ourselves be defined by that pain and somehow, we must learn to do so while also adapting to our limitations with grace.
Even though most of my life has now revolved around pain and illness, I find that I still push myself too hard, too often; that I’m often overwhelmed by the feeling of inadequacy–that I’ve somehow failed because I cannot function at the same level as my peers. Perhaps I will never shake the feeling that I should be doing more, if for no other reason than I want SO badly to do more. There is no blueprint for this kind of life, no model for how to manage the feelings of isolation and frustration that are at times so overwhelming. That each of us must find our own peace and balance, and learn to coexist with our pain in our own ways only compounds the feelings of frustration and isolation. But when individuals such as yourself let us in, and remind us that happiness, love, success, and the struggle with pain and illness can co-exist…these are the moments when so many people feel a little less alone, and so much more hopeful.
Thank you for your honesty, your hard work, and thank you for persevering. Always carry in your heart the loving presence of your audience; you have touched the lives of countless people and I hope that the comments left here are able to return the favor in some small way.
Tony Delgado says
All your comments and the others I read are inspirational and I pray that all of you live a wonderful life for as long as you can. Making good food and lifestyle choices can help a lot and I am very thankful for all that you have done Elana to share a healthy direction and wish you many more years of life!
Rochelle says
You are in my thoughts and prayers although I have not written regarding your latest posting until now. You are such a giver and such a disciplined hard worker as well as a creative knowledge filled person. I hope that with all your work and treatments that youwill be blessed to have improved healthin spite of your difficult diagnosis.
A refuah shleimah to you!
Judy says
Hello Elana,
You have been an inspiration to me, I’ve been using your recipes for years and I too, have MS. Since I was diagnosed in 2006 like yourself, I’ve been using complementary medicine and for me five years into it, added western medicine to the list as I could feel a decline in my body. My experience has been the slow steady decline, mostly exasperated, I think, by stress. Now I’m following the Wahl’s Protocol and struggle with it as I find it difficult eating organ meat, but it’s supposed to be a good healer. Where I’ve lacked is in the meditation department, and I’ve just been introduced to a great guided meditation for healing by Peggy Huddleston – Relaxation/Healing CD, there is also a book to accompany it. It’s geared toward post surgical healing but is definitely more global than that. After sitting through the 25 minute session, it leaves me in a happy place, a good place to be for healing. I continue to strive for reversal of disease, like Dr. Terry Wahls. I can’t give up and know that you won’t either. You are an amazing woman and have a lot more to share with us when you are ready. I send love and healing wishes your way…..be Well!
Danelle says
Thanks for sharing. Your website has been a mainstay in my life over the past few years, and I have referred many to it – people dealing with celiac and other disorders or just trying to eat healthier. You provide a great service – and it is amazing that you do so while battling your own physical issues. Thank you and God bless you!
karen says
its lovely how you express this very scary and unknowing experience. thanks for the transparency. a cheer to you. sending great energy to your healing journey. and thanks for keeping my stomach full of tasty morsels. karen
Sandra says
Dear Elana, blissful creator of the carrot cake recipe I love to make into muffins, which will fuel my 10-year-old daughter for her first triathlon of the season in Longmont tomorrow. She has type 1 diabetes and is an incredibly strong and beautiful human being like you — unstoppable in spirit, even if she has to take a rest. I will bake your endurance into tomorrow’s muffins for her ; )
I wish you all the equanimity you need every morning to make your day normal. I know normal is different for you, as it is different for us. And sometimes “not bad” is all you can hope for. You have created a brilliant body of work already. It is ok to rest and heal… while people are celebrating you and your books, stories and recipes. Your tribe is growing all the while.
All my best to you,
Sandra
Lafayette, CO
Lizi459 says
Hello, I happened to stumble across your website while doing some extensive research (some contradictive) on celiac and I’m hoping that the paleo way may be the most effective and rewarding for my family. I’ve read comments and praises and that’s really been the only uplifter for me so far.. However I would like to as you about the travel portion of your article, what is it you eat when you travel? And how?? These recipes seem to be quite particular, however simple and delicious sounding, but going away I can’t imagine people are as accommodating! I have just learned to pack our own snacks when spending the day out, but dread the phone call that has us invited anywhere because I have no idea what we can eat.
I would appreciate it if you had the time to shed a little light on this for me, we have our first family vacation planned and now I also don’t want to upset the kids because I’m going to make them feel as if they are caged at home because of my fear for their health.
Lots of positive vibes your way…