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.
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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.
Patty Stottlemyer says
Dear Elana
Just reading your post. Wow, you have a LOT Of comments. I didn’t read them all.
I don’t know if you know about LDN: Low Dose Naltrexone. It is probably most prescribed in the UK where the incidence of MS is very high. LDN was discovered by a Harvard trained internist, practicing in New York in the 1980s and 90s.
It is of great benefit to the immune system, thus really helping people with autoimmune stuff, including myself.
Looks like you have some great articles on your site that I will read, like the EMF one, and great recipes.
Thanks for your contributions
Best to you,
Patty Stottlemyer RN
Encinitas, CA
Elana says
Patty, I started taking LDN in 2005, and wrote about it here!
https://elanaspantry.com/low-dose-naltrexone/
Thanks for reaching out!
Elana
Paula N Pierce says
I was transfixed to find my 25 or so diagnosis’ amongst this wonderfully written item explaining how Lyme disease is many times at the ‘base of’…pretty much all that has ‘been wrong with me’ for most of my almost-70 years….may be you will find yourself as well ? Like you, besides Hashimoto’s that for me was diagnosed 20+ years ago….I was (( just)) diagnosed 1 month ago with Lyme disease….this chart was 1 of the items i began researching…..my bloodwork was done by a great internist/diagnostician here in the Houston medical center, named Patricia Salvato….mine is chronic aquired when i was a very young child, altho i have no memory..like most people diagnose…of a particular tick bite…i have come to believe that mosquitoes & flies are also involved….i am battling Lyme with prescribed antibiotics altho it goes againist all i believe about antibiotics…as well as many supplements, eating yeast free, exercise, and the energy machines Ondamed and Rife…..Hyperbaric Oxygen Therapy has also been a suggested option for ridding yourself of the Lyme spirochetes….I hope this reaches you…and mostly I hope it is of some comfort….feel free to contact me !
Elana says
Paula, I’ve written about that part of my journey here:
https://elanaspantry.com/new-approaches-to-neurological-conditions/
Thanks for reaching out!
Elana
Gina says
Most likely it is the mold on the plane that shuts you down, planes have a HUGE amount of mold and I am guessing you are highly susceptible to it. Wear a personal ionizer while on a plane, not perfect, but will cut down on the reaction. My husband was having the same problems, and we were “grounded” for a few years until we figured it out.
Teresa Dunivent says
Thank you for this post. I have had the same Thyroid issues for ten years now. Then, I was diagnosed with Celiac’s over three years ago. Currently, I am experiencing other health issues, and dread another diagnosis. Your blog has been a blessing for me. The changes I have had to make in my life have been easier hearing I am not alone, and knowing that I can still eat food that seems a splurge when it isn’t. Thank you so much for sharing. It seems very few people really understand what it feels like to be sick and yet look like you aren’t. My daughter has not been diagnosed, but started the same journey with food and health after seeing my struggles. She loves your recipes too, and we always share our thoughts about the them via text as she lives in California now. Thank you again!
Patricia Stephens says
Elana,
Thanks so much for sharing. You are one lovely woman. I so appreciate the wonderful recipes. I rely on your website so often, especially when I want to make something spectacular.
I understand your health stuggle because I was totally disabled with fibromyalgia almost 20 years ago. Praying and researching made a big difference. Today, I have recovered and believe I did so mainly by balancing my hormones. Hormones are power players in our health and well-being.
I have written a book about my recovery and it is free on Kindle. Reversing Chronic Disease: A Journey Back to Health. Blessings to you and your own journey to recovery.
Mia says
Love to you Elana! Thank you for sharing your story with your followers. Wow. You are really a warrior and you will get through this. Amazing what you do and have accomplished despite your challenges.
warm regards,
Mia
Brooklyn, NY
Leslie says
What a heavy diagnosis, and a heavy year. Your will to heal to truly inspiring. Wishing you the best,
Michelle C says
There’s strong and then there’s Elana strong. Keep fighting! You are in my prayers and I am so sorry I never took the time to tell you thank you for all your hard work that has benefitted me and my family for years. Thank you.
Veronique says
Elena, your recipes have never failed. Love and appreciate your ability to create such tasty dishes. I’m very happy that you have been able to use nutrition to your advantage, food can be a powerful healer. Stay well my friend. Best wishes!
Elvia says
Dear Elana,
This social media thing and using your cookbooks in some ways, makes the rest of us feel like we “know” you, which really we don’t. But what I do know is that your blog and your cookbooks have brought fun recipes, tasty treats, and inspiration for us and for our daughter who has been following the Specific Carbohydrate Diet for over 6 years.
I’m back on your site these days due to other health issues going on in our home and just read your “piece of me” pouring out of heart. I pray you heal and are able to have a semblance of “normalcy” (we call it the “new normal” in our home). I pray you are surrounded by people who support you and lift you on the darkest days. I pray you are surrounded by answers and direction in order to gain energy, mobility, and greater strength for your well-being and for you to enjoy your family. I pray you are able to let go of all the stuff in order to allow space to just be in the silence of what can sometimes only be defined as sorrow, pain, and greater yet, the road to a healthier you. You have blessed so many of us with the tools and energy to lead a better life, I pray God will grant you the blessings you have already given so many. May your body heal, your mind be at peace, and the love of family and close friends be your rock.
To your health and road to recovery!