A Piece of Me

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.

Your story is as inspiring as your tasty recipes!

Comments

399 responses to “A Piece of Me”

  1. Hello Elana!
    I love your recipes. I also have MS and I’m trying and giving all I have to stay at a health level so I can make it through the day. I know how hard this is and to me sometimes also frustrating. But we have to go on and fight. Did you ever try acupuncture? That helps me a lot. I would like to hear how you are doing.
    PS. Thanks for your work, you are simply amazing.

    • Hi Elana, I have type one diabetes and tried to lose weight by decreasing my insulin and decreasing food intake and lost 20 pounds in three weeks but I got DKA and landed in the hospital and almost died. I too realized that I needed to pull out of life to figure things out and heal which is why I am on your website. People that have not had to deal with health issues do not understand why we pull away. I am trying different recipes and taking my regimen of stuff. I appreciate you sharing your challenges. I am seeing doctors, nurses, and other specialists to get my sugar balanced and cholestrol that is dangerouly high, as well as metabolic syndrome, thyroid, and a stomach and diabetes that does not tolerate grain. I am also starting up exercise and journaling my sugars for all the doctors. Very time consuming. I like spices and miss my old ways of prepping food but am willing to make the necessary changes to get my health on track and that is to say no to events and outings until I figure out what foods help me and what foods do not. so far a vegetable fruit diet levels out my sugars but I do miss pizza. Anxious to make your birthday cakes recipes for my daughters birthday. Thank you for this blog. Blesssings to you as you march forward into wellness.

      • Amy, thanks for sharing your story here, it’s so helpful when we can be together on this healing path and know that there are others who understand what we are going through. So many blessings to you :-)

    • Hello Elana
      It is me, thinking of you again. I have been watching a 9 part episode of The Healing Miracle produced by Jeff Hayes.
      Last night on Episode 4, a scientist moved from the States years ago to Panama to continue research and innovation where the guidelines are more compassionate.
      His name is Dr. Neil H. Riordan. There has been success with MS.
      Each episode is free for 24 hours; then it is possible to purchase the entire documentary.
      Episode 4 is available today 8/4/18/until 6:00 PM Pacific Time. This is the episode where Dr. Riordan
      talks about MS and other major breakthroughs.
      Perhaps you know about him already. The purpose of the documentary is to educate the
      public about the many encouraging advances in stem cells.
      In peace,
      Shri

      • Thanks Shri, I’ve been researching stem cells for about a decade and the work is incredibly promising :-)

  2. Thank you for sharing what you have been through. I have always enjoyed your site and follow you on Facebook. I love your recipes, they are delicious and make Dairy Free and Gluten Free taste better then I ever imagined!

    I was diagnosed with Multiple Sclerosis on February 15, 2018.

    • Charlotte, thanks for your comment and for sharing your news here with me. I’m so sorry to hear about your MS diagnosis, but glad that we are on this healing path together. Thanks for letting me know that my recipes are helping you and make DF/GF taste better than you ever imagined.

      • Elana – I have all your books and love all of your recipes. I’ve often wanted to write you about how much you inspire me. My heart and prayers are with you and those who suffer from MS. I’ve been battling chronic Lyme disease for the last 15 years. I also have a daughter who had battled chronic neurological Lyme disease for 12 years. She spent 3 years in bed. She is now well and flourishing. Although my battle is nothing compared to yours I have been struggling for years with a myriad of symptoms that can be very debilitating. The reason I’ve wanted to reach out to you is because although I am no expert, throughout the last 20 some odd years I’ve learned a lot about Lyme disease. There have been many people diagnosed with MS who have actually unknowingly had Lyme disease and once put on a Lyme protocol started to feel better. I do not know much about MS but I felt compelled to share this information with you. I don’t follow your blogs (due to time constraints) but would love to hear back from you that you received this message. Sending you some healing light and love.

  3. Thank you for sharing a piece of your broken, hurting self. I’ve followed you for years, have two of your books, and have loved your yummy, simple recipe for brownies for a while now.

    It means the world to hear of your work and surrender to the whole process of deep self care.

    Thank you, thank you, thank you.

  4. Wow, I just read this for the first time. Thanks for sharing your story…or a bit of it. Jesus loves you and wants to heal you. I’m right there with you on this journey of wondering what’s around the corner but I choose every day to live in hope with my heavenly Father. I don’t know if He’ll heal me on earth but I live much better, full of joy with His hope. Seven years ago when I got my first diagnosis, you were the first author I was introduced to through my dear aunt. I am so thankful for your recipes! I use your cookbooks regularly and my family can enjoy the dishes also even though they don’t need to eat so restricted as I do. Thank you again! God bless you!

  5. Elena

    Thank you so much for your website and recipes. I have printed several to try out. I just started Dr Gundrys diet and recommend you read it if you have not. He mentions helping people with MS. The book is called the plant paradox by Dr Gundry.

  6. Dear Elana, what a pretty name.

    I have 2 of your books which are now looking rather tatty from use – great recipies. My sincere thanks for your time and effort helping so many people. I am extremely lucky to be a very healthy person in my 70th year.

    The www had been getting bad press because it is so easy to spread nasty things and ideas but people like you wanting to help others eases the awefulness (if there is such a word!!)

    I am very sad that your health has deteriorated but what a lady!! Leading us with words, recipies and suggestions etc. The love and joy that you give and receive from your family shines through every word.

    Keep teaching us, gentle lady.

    Much love Kate (from Australia)

    • Kate, I totally agree, the internet can be a challenging place. But I’m so lucky to have this space in it with amazing people such as yourself. Thanks so much for being on this healing journey with me and for your wonderful words and love :-)

  7. Dear Elana,
    In February 2017 my son (16 years old) began having stomach pain off and on and by March 6th we ended up rushing him to the ER. He was in the hospital for over 2 weeks and diagnosed relatively quickly with moderate to severe Crohns disease. Luckily, my dear friend is a functional medicine doctor, and after witnessing medical miracles by how she treated my daughter and my husband, there was no doubt to have her guide us through this new path for my son. To make my long story much shorter, we have drastically changed his eating habits: gluten free, dairy free, corn free (mostly grain-free) and leaning towards paleo/low carb/ketogenic and specific carb diet. I have been going through the internet finding decent recipes hear and there, but when I happened upon your website, I felt like a new world for cooking for my son had opened up to me! Everything I needed for his diet plan was on your website. Thank you, Thank you, Thank you! I am so appreciative of your research and your hard work. I have shared your website with those who follow the same type of eating lifestyle and will be soon having a cooking day for making and freezing your recipes with a friend who also has a son with crohns. I pray that you feel better and are on the road to recovery.

    • Krystal, thanks a million for your kind words. I’m so glad our families are on this healing journey together and that everything you need for your son’s diet plan is here on my website :-)

  8. Elena, thank you for your transparency! You are an inspiration to keep going No matter what, thank you for all your sharing ame caring for each of us readers. My prayers are with you during this continuous fight!

  9. Hi Elena. We have commented to each other over social media in the past and your people sent me books for my MS group. So awesome. MS is a daily struggle. I was recently accepted at Northwestern for a stem cell transplant. HSCT. Battling insurance but I’m going to get this done and stop my progression. I’m going to live my future better! Always wish you the best. xo

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