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.
Kathy Marsden says
I am grateful to read your post today. Thank you for your honesty. You articulated so well the journey. I appreciate your candor about having to slow down, accept your own limits and be gentle with yourself. This is what is encouraging me today as a result of your post. I can also be kinder to myself by accepting my limits and respect how difficult my journey actually is and I could also be honest with those around me instead of having a Media face. Bravo Elana. I have followed you and baked with you for a long time and am so grateful for your part in making my life better…thank you.
Sidney says
Thank you for being authentic and transparent about your health. It is inspiring. Wishing you many years of vibrant health!
Tania says
PS to my other comment… my sister was diagnosed with fibromyalgia, and doctors suspected MS but did not diagnose it in the end because her brain lesions improved/disappeared. She finally was diagnosed with Lyme Disease, and that’s when she began to get well. Her doctor does not “officially” treat Lyme (and therefore is “cash only”) because apparently, official medical “doctrine” is that Lyme Disease does not exist in our state. (Say what??) Just thought I’d throw that in, just in case you haven’t yet explored that possibility. Blessings to you!
Susie Hollams says
Hello from Perth Australia another place that”doesn’t have Lyme” can your sister remember receiving a tick bite and did she present with the normal circle Lyme rash? I ask this as I have MS symptoms but I am diagnosed Fibromyalgia plus some undiagnosed neurological condition. I have been like this with episodes years then months and now continual and “we” are still trying to solve this. Any comments or advice will be gratefully received. Regards Susie Perth Australia.
Joanna DeHart says
Supposedly Igenix is the only U.S. lab that is reliable when diagnosing Lyme Disease. Many Lyme “experts” believe MS, Parkinson’s, Alzheimer’s etc are just Lyme disease. I was diagnosed with MS in 2013 but am wondering if it really is just Lyme. I plan to be tested again and use Igenix. Good luck to you!
Tania says
Elana, thank you for sharing this part of your journey. You are certainly an overcomer and an inspiration, not to mention all the great recipes that have helped so many of us! My prayer is that you will uncover any hidden factors in your health challenges, that your health will be fully restored, and that you will live in ever-increasing peace and joy. :) Thanks for who you are as well as what you do!
Here’s a little blessing I like to share: I bless you with fresh hope, new strength, supernatural wisdom, and the best strategies for your situation.
Linda says
http://www.gizmag.com/ccsvi-multiple-sclerosis-ms-cure-zamboni/13447/
Elana, please read this. Could it possibly help you?
Stacia says
You are very brave ! It takes both a wise and brave person to let go and take time to work on getting well. Determined folks often put on a strong face and fight to get well . It takes a lot of honesty and self reflection to recognize that taking some steps back, slowing life down a bit may be the best option. Give yourself to your work when you have it to give and gift yourself some compassionate rest when you need it. I dislike the word ” balance” since we know life cares not a lick about that! We don’t often get to choose what gets thrown our way. We can control our attitude . We can choose to be patient and kind with ourselves when none of it goes our way. I am sending good thoughts your way that your health improves.
Linda says
Thank you for sharing your story. I found out three years ago I had lupus and in February that I also have MS. My co-workers and some family members know but others and friends do not. It is not easy to share your story. I have made changes to my diet and have seen some improvements but not all. I now have a support system medically so I am pleased and grateful for that. I Thank You for your site and books you do provide so much for others and thank you for allowing others to be here to support you as well. It is difficult to accept support sometimes as we do think we can do it by ourselves. Through sharing your story you are supporting others too. Thank You Elana, for all you do.
Adine Marc says
I am sorry you have not been well. I love your blog. Thank you for WONDERFUL recipes; you are my go-to when thinking about what’s for dinner. My advice to you. Do what you need to do for your life, your family. If anyone has a problem with that, well they can suck it. No one but you knows the inner voice that guides your life. Honor that. My best to you.
Adelia Neptune says
I am so very sorry that you have suffered so. After reading your posting, I truly could only think that you might well have neurological Lyme disease and/or one or more of the co-infections. You see, my son, his wife, daughter, myself, and my cousin ALL have the above mentioned disease. Lyme disease is called the “Great Imitator,” and that is why. Many people have been diagnosed with MS when indeed, they had Lyme disease. It might be worth looking into to. I am so very happy that you have been able to return to some normalcy in your life.
Sharon Rimland says
I was going to write the same thing about it being Lymes and co-infections. My daughter and I are both patients of an integrative medicine doctor who practices biological medicine. I believe that if you have not gone this route yet you must. She has many health issues related to epstein barr and lymes. I have colitis which was caused by mold and parasites. I also have a co-infection to Lymes called Babesia. Our doctor has treated many who were told they had MS but actually did not.
Lynne says
Bonjour Elana!
C’est si bon de te lire aujourd’hui. …
Ça fait un an que j’ai fait ta connaissance à travers ton livre de recette paléo ; ça a changer ma vie! Mal en point depuis maintenant 6 ans,on a découvert une thyroidite d’haschimoto,des intolérances alimentaires ( gluten,produits laitiers,soya,café, thé et solonacees ). Tes recettes m’ont redonnées le goût de cuisiner et de manger! Mille merci! Aussi,jj’aime ta newsletter qui me donne plein d’espérance et de connaissances.
J’apprécie particulièrement ta lettre aujourd’hui car j’avais l’impression que tout allait bien pour toi ( je vais y arriver moi aussi )et ton partage me fait réaliser que je ne suis pas seule à avoir des hauts et des bas…que ça fait partie de notre périple. Merci de faire partie de ma vie! Courage,t’es pas seule!