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.
Lisa Greenbaum-Bagnoli says
Elana, thanks for being brave and sharing this story. I love your site and while I am blessed with good health often find myself making your recipes. Sending you love and light from Seattle
Sunday Sommers says
Came home a few hours ago and had to sleep after my 13th HBOT treatment! I was so excited to read that it was helpful to you since I am in the early phase of treatment and unsure of its effects on me yet. I have Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, which has put me on crutches for the past 20 years and dealing with A LOT of pain. I saw a few demonstrations by Dr. Harch on youtube and took the idea to my neurologist. He was skeptical but given the acceleration of my pain/disabilty and lack of good alternatives, wrote the referral for HBOT. It has put some people with CRPS/RSD into remission for a period of years, so I have reason to be hopeful.
Hearing from you that it is being used for MS gave me more confidence, so thank you for sharing that. I have only found one study that was done on 70 people in the early 2000’s. If you know of others, I would like to share them with my two neuro’s.
Luckily my husband and I have retired to Mexico where HBOT costs roughly 1/10 what it does in the U.S. No kidding. So if you know of anyone who can’t afford it, please refer them to me for information .My HBOT is done in a hospital associated clinic with an MD on site.
I was enjoying your cookbooks and website recipes for several years until my condition worsened the past two years. A Nurse/Functional Medicine Practitioner had put me on a gluten free diet and fed me your chocolate chip cookie. I was in. Love the creativity and practicality of your recipes, and hope to be back on my feet/crutches and cooking some of them again. I have managed to cook that way when I was in better condition even with crutches. Thank you for being so generous with your recipes on the website. You may have MS, but your heart is in great condition.
So, enough already!
Sincerely,
Sunday
Mary Hallahan says
Dear Elana,
You are a shining light. Thank you for sharing your vulnerability and letting us know what a warrior you are. Saying no, slowing down – those are more difficult than most can understand. You are brave, disciplined, and a leader. May you continue to recover in all ways,
Mary H
BA says
WELL SAID! You truly are a shining light. You deserve the very best life has to offer. Blessings to you and yours.
Sandy Brill says
Elana, thank you for the many ways you have been helpful to me with your recipes and shared blog thoughts, especially while you have been going through so much. I also have Hashimoto’s autoimmune thyroiditis and hypothyroidism, as well as non-celiac gluten sensitivity and several food allergies, so your helpful ideas and recipes have been very helpful. Do whatever you have to do to stay well and happy. All the best to you!
Sheryl Kaplan says
Hi Alana,
I’m truly sorry for what you are going through & proud that you shared your most inner thoughts & feelings.
I go to a Dr in Tijuana Mexico. I have been going to him for 9 years for RA & originally many other ailments. He works with so many people with MS from all over the country. I have personally seen miracles for so many of these incredible people. He does stem cells, chelations & many other things. He is also a medical Dr but he specializes in homeopathy. I will give you his San Diego # just in case you would like to call & hear what he has to say. Also, if you ever want to talk with me here is my # 619.398.7047
Dr. Jose Antonio Calzada Adame. He goes by Dr Calzada. His # is 619.754.4885.
I wish you the best of luck in whatever you decide to do.
Take care!
Sheryl Kaplan
Ann says
I have a 48 year old daughter that was diagnosed with MS 10 years ago by a famous Ohio Hospital facility. She needed lab tests done recently and went to a local doctor–he found she had Lyme disease instead of MS. She went to a doctor that worked with Lyme disease patients and was able to get cured. However, her immune system was so damaged after all these years, she now has an Electrical illness. She cannot be near computers, cellphones, high tension wires, or any other electrical systems. She struggles trying to find a cure or relief for this illness. Thank you for sharing your life with MS.
Amy Broderick says
Ann, please tell your friend there is a new invention on the market called “The wave plug” it plugs into an outlet or can be literally taped to the outlet if in a foreign country and it neutralizes all Emf’s within 5 feet in all directions of the parameter of your home. It can also be placed on your cell phone for 5 minutes and shifts the polarity of your phone to “positive” and can then be used as a healing device. I have one and I love it. Its new and only $35.
http://www.thewave.solutions/
I don’t sell them, my former coaching client does and its ancient technology, every home and office should have them imho!
Joanna says
Elana, thank you for sharing this. I found your website when I was searching for information about paleo and AIP. I’ve been out of circulation for almost 2 years now in a situation very similar to yours, only it’s related to illness caused by breast implants (diagnosed as CFS). We women who have this illness call it BII–breast implant illness. If, by any wild chance, you have implants, please look into having them removed. Many of the women who have them removed (some who have been diagnosed as having MS) experience remission from their symptoms over a period of a year or two. I wish you good health, much happiness, and I thank you for your wonderful website and recipes!
Gargi says
Elana, you are a brave and courageous woman. Thank you so much for sharing part of your journey with us
and also for sharing your recipes. Your are an inspiration. May you continue blogging with good health.
Nancy says
Thank you for sharing Elana. You are an inspiration to all of us that read your blog. I echo many of the other poster’s comments. I also have an auto immune disease which led me to your blog with my interest in Paleo cooking. I have made your almond biscuits a few times for holiday meals. We really enjoy them.
Amy W says
Dear fellow leftie
Your story will inspire countless others. I believe we need to speak up about our challenges to encourage others who have had the same or similar health challenges.
I’m a 2x breast cancer survivor and spent 3 1/2 years dealing with my own medical nightmare. But I’m now over 13 years out. We’ve adopted a former foster child. My chest has a bigass tattoo covering all the scarring – despite the fact that Jews shouldn’t get tats. Now I look in the mirror and see art instead of what I’ve lost.
Btw my 14 year old has a classmate who was diagnosed with TM a year ago. It’s unlikely she will walk again and she was a dancer and competitive swimmer.
You know the power of diet. Fellow GF blogger and cookbook author Amy Green first mentioned Young Living essential oils to me. I’ve since joined this amazing company. One of the leaders also has MS but she hasn’t let it slow her down.
Stay strong. Remember to breathe. And know that humor will get you through.
Xo