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.
Melanie Gill says
Thank you for your website, books, and newsletters which have been such a blessing in my life. I love your recipes and your down to earth way of communicating. I also appreciate how vulnerable you have been allowing us to peek into your world and see the real you and your amazing life journey. With each share of yourself, it helps me heal too and allows me be more vulnerable too. Keep being you. Keep sharing. And keep being the leader you are in this world.
teri s says
Dear Elana~
What a story! I’m glad it doesn’t end there! As you have done with this amazing site and your son’s health, you’ll continue to learn and grow and heal. Keep searching. Don’t stop at…..I have been diagnosed with….
I too was diagnosed with MS…after being diagnosed with Guillain-Barre, Lupus, and an another unnamed auto-immune disease back in 2007. Something wasn’t sitting right with me. I wouldn’t take their prescribed drugs nor was I willing any longer to helplessly hand over the care of my body to someone who doesn’t even know me. I began to search, learn, question. I found an unconventional doctor who agreed with me — he wasn’t convinced it was any of the aforementioned issues. He sent my blood out to a special lab in CA (IgeneX) that ran testing for Lyme Disease. You see, Lyme is called the 2nd great imitator, caused by a bug similar to the bug that causes Syphilis (the 1st great immitator). Scary, I thought. But, not as scary as treating my symptoms and not getting to the root of my problem! My blood work came back as he thought it would–positive for Lyme….and 8 co-infections. I was one sick puppy, but not with MS or any other disease I was diagnosed with. But, why do I tell you all of this? Because MOST doctors don’t do the sensitive testing necessary to find the Lyme bacteria. I had three negative test for Lyme–two by blood draw, one from spinal fluid. Means I don’t have Lyme, right? No! Means their testing is flawed. A clinic out east (I don’t know where you are…) tested every one of their MS, Parkinsons, etc patients with the specialized test, and almost 100% (it may have been 100%–if not, very close) had the Lyme bacteria——which causes symptoms that mimic these and other diseases.
If you’re interested in looking into this further, for your own good, please contact me. I’m on my road to recovery–it’s a long road, but it’s better than those I have come in contact with over the years who chose to stick with the doctors diagnosis and/or treatment.
BTW, I have nothing to gain from this but the satisfaction of knowing I have done what I would want from others who have traveled my path.
Linda Ricw says
Hi, I have 9 children, yes I gave birth to all of them. I have always been small, never gained much weight and for the most part am a super energetic person. I always thought I was SUPER healthy and habe always been a health freak!. I guess I have Hoshimotos and was told by a functional medicine doctor that if I don’t get it under control and I have 1 or 2 more kids it could turn into MS, my ex husband also has MS. I was instructed to stop eating gluten immediatly. I couldn’t afford to see the doctor any further so I am reading books to learn more about this. I stopped cold turkey taking my hypothyroid medicine that I have been on for 11 years and am trying to contol this by diet. I read a book that you should read if you haven’t already. It’s called Grain Brain. I am also reading “Why Do I Still Have Thyroid Symtoms? When My Lab Tests Are Normal”. I am learning that hoshimotos and MS are both auto ammune diseases just MS is more escelated. I am so sorry about your diagnosis! I hope you continue to stay up! Blessings to you my friend
Amy says
Elana, your life story is a mirror image of my life as well. I am even leaving for our family trip to Mexico in a few days. I share your sentiments about travel and have experienced the setbacks of it.I also take part in integrative care It has been 12 years since I have been plagued with chronic illness, pain and fatigue. In the first few months and years, I would ask why me or don’t you care about me God? I was honest about my groans, pains, doubts and disappointments with those I loved including God. I didn’t have a very close relationship with God and I certainly didn’t know Jesus. At one of my most painful, fiery trials, a friend began to read to me King David from the Book of Psalms in the Bible.I heard his honesty as he cried out in pain and anguish to God, but as the verses went on his distress turned to God’s goodness, God’s gracious character, and His future for those who trust in Him. I began to read the psalms for myself, sought help with understanding on other parts of God’s Word, and came to know Jesus in an intimate personal relationship. My life was transformed and continues to be transformed each day. The illness, pain, and trials are still a part of my life, but my joy has been restored, and it is an inexpressible joy that can only come from knowing I belong to a loving, sovereign God who cares for me. I may not understand why I have chronic illness in my life, but I do know that God drew me closer to Him through this and life is more precious than ever. I have contentment trusting that God knows what is best for me, after all, He gave His Son Jesus so I can go to heaven where I will be set free from pain and illness. This life is short, but eternity in heaven is forever! Blessings and prayers for you, Elana.
Linda Parker says
Dear Elana, thank you for sharing your feelings and your journey. Your words are such a comfort to me! I too have had many health problems but rely on a healthy diet and “real food” to give my body the chance to heal. Stress is a major factor in our healing process and I thank God for the insight and the good solid recipes your website and emails have given me! Found you by chance, or maybe not by chance but by plan. I wish for you many opportunities ahead to be “of service”–this is my desire also. I absolutely love your recipes and the ease with which they are prepared1 Thank you for your efforts and compassion for others.
Three-time cancer survivor, but I choose to THRIVE, not just survive! Thank you again.
Elisabeth says
Thank you for sharing Elana – it sounds like it’s been a tough journey. Thank you too for sharing all your wonderful recipes with us. I’ve made lots of them and have thoroughly enjoyed them!
I’ll be praying for you,
Elisabeth
lisa says
Thank you for sharing your story. I know I’m not alone in saying we are a group of thankful, devoted readers that all wish for health and happiness and appreciate the time/energy you give.
Ashley Breton says
You have been brave both to share and to push through. I have always appreciated your recipes as they helped heal me back to health. I hope you too can continue to forge through and will find peace with your health and well being.
Lene says
Hey. I live in New Zealand. Am a reflexologist, and have a few ms clients. Some are on high doses of vitamin b and it has made a real difference.
I realise were all different and ms is different I every person.
But Google it. I’d you’d like to know more, let me know.
I think there is a Fb page as well.
Lene
Michele says
Dear Elana, Thank you for sharing your story and journey. You are an inspiration to me and so many others. I am grateful to have found your blog (and to have bought your books) because you offer such wonderful resources to those of us trying to heal ourselves. I’ve been grain-free for about a year to address autoimmune illnesses that I have. Finding your recipes has made this change so much easier. It was such a thrill to be able to have “matzo” balls at Passover this year. That’s just one example of the deliciousness and feeling of not missing out that I have found through your work. And I started Pilates again (which I had done many years ago) after seeing your posts about it.
I know how difficult it is to have an invisible and chronic illness. Thank you for leading by example. Wishing you ease and joy.