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.
Laura Crozier says
Just reading this now as I’m a new subscriber to your newsletter (but have followed you on FB for a couple years). I, too, suffer from hashimotos on top of PCOS that has caused significant weight gain that’s proven quite nearly impossible to get rid of. I keep trying all sorts of docs – right now I’m working w a chronic condition chiropractor to heal my gut, which will help heal my thyroid (manage it), and he’s also told me my normal paleo diet is what’s made me overweight (when in 2009, it made me thin! but then broke my gallbladder, so that’s gone). Apparently my body can NOT digest and properly use carbs, dairy, and sugar (bc of the PCOS), but now, also cannot digest much protein. I’ve been fighting it within myself, but I’m going to have to breakdown and embrace vegetarianism, minus soy products and all the other food group mentions, and supplement w a small side of protein at each meal. This is so hard for me, but I want my health back. Reading your stories has given me renewed strength. Thank you.
Elana says
Laura, thanks for leaving this brave comment! Remember we are all bio-chemical individuals and there are no one size fits all diets. It’s critical that you do what’s right for you and it sounds like that’s what you’ve decided which is fantastic :-)
Helene Oldweiler says
Dear Elana, thank you for your sharing. I was diagnosed with MS in July 2011 after having had a terrible Spring and Summer. I was in shock, how could that be. I always felt like I was healthy and did all I could to take care of myself. But I had to do more. I do take Copaxone 40 mg, but I feel what helps me most is a paleo diet. I read Terry Wahl’s book, “Walh’s Protocol” and purchased 2 of your books. Even before I knew you had MS, I always had wanted to contact you and felt such a strong connection.
I do not identify myself with MS, but I do all that I can to take care of myself. A paleo diet (for the most part, not 100% strict 100% of the time), exercise, lots of supplements and herbs, and working with my state of mind.
This summer I plan a spiritual pilgrimage. I am 67 years old and hope and pray and do have confidence in my capacity to do this. I pray and send wishes for your healing and well being and that you can continue to do what is most important to you. If possible, I would love to send you more information privately about what I will be doing…best, Helene
Elana says
Helene, thanks for your lovely comment. I’m so happy to meet you here and am incredibly heartened by your story, and also to know that we are on this healing journey together :-)
Ada says
Hi Elana,
I’m not sure if you have come across it already but if not then you should definitely look into Coimbra protocol. You can find a lot of info on FB these days in a couple of groups.
I also have MS and apart from sticking to a healthy diet and supplements I am on the Coimbra protocol and doing well so far. I started it pretty soon into my diagnosis so can’t tell what difference it made but I know many people with MS (and other autoimmune diseases) swearing by the lifesaving effects it has had on them. For me, after the initial trauma associated with the diagnosis, discovering it was like winning a lottery. I hope you will feel similar about it.
I wish you all the best!
Ada
Elana says
Thanks Ada!
Susan says
Hi Elana, I came across an article a friend sent me regarding MS.
There is a Doctor of medicine in Melbourne Australia who has MS. He has studied and researched The Lancet who published the results of a study by a neurological professor Swank and researched many other diet and lifestyle factors and now uses an evidence based approach, with amazing favorable results. If you are interested I will email the article to you. Happy for private contact.
Susan
Elana says
Hi Susan, thanks so much! I am doing very well in terms of diet, however the radio frequency in the house we built made me very sick and can be detrimental to folks with neurological conditions. Here’s a post I wrote about it that may be of interest:
https://elanaspantry.com/simple-steps-to-reduce-emfs/
Thanks again for thinking of me! I really appreciate it :-)
Elana
Dionne Adamitis says
Dearest Elana,
I came to your site tonight to find yet another amazing recipe. It hit me that I had never said “Thank You” to you for all the work you put into this blog, for the hundreds of times you tried a new recipe and adjusted it and made it again and for the thousands of times that you cleaned up yet another kitchen caper.
I am recovering from Chronic Fatigue Syndrome for the last 20 years. I am driving again and have 1/2 a normal life, of which I am extremely grateful. I am so grateful for you and your work because you have helped to make my life more “normal” as I cook for my family the grain free recipes that we require to heal. Your recipes are good and (mostly) simple to make. I also love that you celebrate the Passover and have recipes for that also. I am a believer in Yeshua and also want to celebrate the Passover as this was the meal that He proclaimed that He was the Passover Lamb, taking away the sins of the world. It means a lot to me that I can look up a recipe to make matzo bread that does not have any grain.
I pray the LORD will heal you and bring you closer to Himself this Passover.
Elana says
Dionne, thanks so very much for your thoughtful comment! I’m so glad to be on this healing journey with you :-)
Beth says
Elena, I’ve never commented on your blog before, but just wanted to tell you that I am very thankful for your blog and cookbooks. You are a beautiful person and have helped so many to enjoy life again. I hope that you are doing okay now. I just lost one of my best friends last month when he was killed by a husband of a wife he was representing in a bad divorce case. His five year old adopted son now has no father, and his wife and friends are devastated. There was just a bill in Oklahoma passed in his name, protecting children with disabilities from corporal punishment in their schools. He was only 48 years old. I’m sharing this because he no longer has his life. I now am so thankful for my own life every day and thankful for people who are as caring as Bryan was. He was a coach, a teacher, a principal, then a lawyer, and most of all the best friend many of us ever had. I think you are one of those rare people that touch many lives too and don’t realize how big of a blessing you are! I will say prayers for your health. Thank you again!
Elana says
Beth, thanks you for sharing your journey with me. I’m so sorry to hear about your friend, that is a tragic loss. I really appreciate your keeping me in your prayers, and you are in mine.
Kim Alexander says
Hi, Elena-
I googled dairy-free, grain-free desert recipe for something for my sister in law and I found your site. I’m SO glad I did for more reasons than that. After reading your MS story, I am blown away at the similarities to my own life. I was diagnosed with MS after losing my sight in one eye temporarily in 2008 after YEARS of wondering what was wrong with me; I wrestle with thyroid issues that they can’t seem to diagnosis (goiters, weight increase); I have a sensitivity to wheat products (not celiac, but digestive problems). And then – 2010 – breast cancer. My life between 2008 and 2012 was a rash of surgeries, meds, chemo, radiation, etc. I took early retirement from an 18 year career in 2013 to focus on my health and that went ok for a minute until I had to start focusing on the health of my parents. My dad has myasthenia gravis and my mother suffered two strokes in 2014 that left her with permanent aphasia and dementia. It’s easy to get caught up in life and forget your own health when you have others to focus on, so I barely missed what was developing into a full fledged exacerbation (just now coming down from three days of steroid infusions and a week of oral). Now I’m trying to pay more attention to my health and I think your website is going to help me a lot. Thanks, and if you ever need any help with anything (I’m also a writer)-please let me know.
Elana says
Kim, thank you so very much for your sweet and thoughtful comment. I don’t write much about it, but in addition to celiac and MS, I have Hashimotos autoimmune thyroiditis and the BRCA gene. Between the two of us our plates are very full! I’m sorry for all that we deal with but am relieved to have people such as yourself to chat with and I’m so glad that we are on this healing journey together. xoxox
Karen says
Dear Elana, I have just found your website while searching for an easy paleo PASTRY recipe for my hungry 13 year old grandson. I haven’t tried your recipe yet but am impressed with how easy it looks. I haven’t had time to read very much on your site therefore I am sorry if the information I am about to send is something that you are already aware of. Please GOOGLE:-
MINDING YOUR MITOCHONDRIA by Dr. Terry Wahls
TEDx Talk – YouTube.
There is also an article on the web – just type in – My Fight Against Multiple Sclerosis by Roger MacDougall. I hope this information helps you and others searching. Wishing you the very best of health and healing. Hugs, Karen.
Elana says
Karen, thanks so much for your wonderful comment. I wrote about and posted that amazing video on my website in 2012. Here’s the link:
https://elanaspantry.com/natural-treatments-for-multiple-sclerosis/
Thanks again!
Elana
Daryl McDaniel says
Elana, I am a recent visitor to your site but am now somewhat of a devotee. We have been struggling with the transition to a Keto diet (recommended strongly by our Dr.). The recipes on your site, and the associated comments, look like they will be a major aid in our adopting the Keto “lifestyle”. It is obvious that you really know what you are doing since your recipes are so straight-forward and don’t require the dozens of ingredients and fiddly instructions of many of the other gluten-free and low-carb recipes. A major plus, is that your recipes work. Thank you for all of your efforts and sharing them with us. I wish the best for you.
Elana says
Daryl, thanks for your wonderful comment, it made my day! I’m so happy to hear that you’ve found my recipes straight-forward, easy, and that they work every time!
Miriam says
Elana, I first came across your blog linked from a guest post you had on joyofkosher. I bumped into it again today while searching for a simple, parve mint patty recipe. I recently started my own food blog at israelisalad, and I find your healthy eating approach inspirational.
My father has had MS since before I was born, so it has always been part of my life, and I understand how it can completely take over someone’s life.
I wish you all the best!
Elana says
Thanks Miriam. I’m so glad to be on this healing path with you!
Patty Stottlemyer says
Dear Elana,
Well, just now reading your post on LDN! Oops, nevermind my last comment. You already know all about it! I’ll be reading more of your site to learn more for myself.
God Bless you!
Patty
Elana says
Dear Patty, I’m so happy to meet you here! Thanks for looking out for me :-)