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.
Bettie says
Elana, I have your cookbooks and love all the effort and hard work you have put in to helping others to have a healthier life by sharing your knowledge. I am sending all positive thoughts your way to keep you well. Thanks for sharing what has been and still is a major health issue. That took a lot of courage and made us all appreciate you that much more! Rest easier knowing you are a blessing to others!
Abbe S says
Your writings are inspiring and the dedication to yourself and all the others who appreciate what you share is a way of paying it forward..
IR says
Thank you for sharing your story. It’s important for us to know your health relapses, as we all care about your well being. Please take time to rest when (or if) possible. I will keep you in my prayers.
Debbie says
Elana, I have crohns and have the same experience with air travel. I am a mess particularly after the return flight on a brief trip of, say 2-4 days. There has been research on this for people with IBD, that visiting high altitude after living at a lower one is the trigger, specifically going over 6500 ft above sea level for more than an hour or two. I’m a sea level dweller though. You live at altitude I’m Colorado. So I’m not sure how that all adds up for you, but you’re onto something for certain. Thanks for your site!
Jen says
Hi, I found your blog a few years ago and have made a few of your recipes (I’ll admit I never was good about following it all the time, but I think I’ll have to start doing that!). I think I first started making your recipes in 2012… about a year after I was DXed with Transverse Myelitis. In August 2011 (when I was 13), I was suddenly paralyzed from the neck-down and recovered a lot but I still have some paralysis, weakness, pain, fatigue, etc., and I had a relapse-type thing in 2014 (when I was 16). Before that, I was diagnosed with Celiac Disease (as a toddler) and had bad reactions to dairy as a baby, so I’ve been on a gfree and dairy free diet most of my life, and my parents always had us on very low refined sugar. Anyway, the celiac ended up being a misdiagnosis– it was actually Crohns Disease, but we didnt find that out until 2012, and the untreated crohns may have caused my TM (or at least was likely a strong contributing factor). Not sure why I’m commenting all of this… But I just found this post now and had no idea you had all of this. I know a few people with MS (there are a lot of people in the TM community who ended up having MS, and I know some other people personally), and I was tested for it, myself, due to the relapse. These conditions are terrible– I can relate to a lot of those feelings about it– and my heart goes out for you. I wish you the best of luck:)
Pam says
Dear Elana,
So very sorry you are struggling with ms along with hashimoto’s. It certainly can and in your case be debilitating. I am not an expert, but have you tested for Lyme? Chronic Lyme can certainly be a contributing factor to your illness. I didnt read all remarks so if mentioned already. So for repeat. ?
I just stumbled across your website this morning. I can’t wait to try the bread. Making today
Take care
Becky P says
Elana,
I was diagnosed in 2007 with lupus, fibromyalgia, and rheumatoid arthritis, and I found your website 3 years ago when my doctor suggested I try Paleo to control my symptoms. My entire family went Paleo to support me, and your recipes are a huge part of our lives.
Pam mentioned Chronic Lyme, which is why I’m writing this…in case this can help anyone else out there. A year ago, my Mom read an article in the Costco magazine about Lyme disease. The symptoms of Chronic Lyme are disturbingly similar to many autoimmune diseases. I told her my internist had tested me for Lyme several years ago, which came back negative. (Apparently it is not uncommon for the Western Blot test to come back negative, even with confirmed cases of Lyme.). My Mom took me to a Doctor who specializes in Lyme, and it turns out I have Chronic Lyme along with 4 additional co-infections from Lyme. The Lupus, RA, and fibromyalgia were a misdiagnosis.
Two people from my parents’ church were diagnosed with MS, and discovered they actually had Lyme, underwent treatment for Lyme, and are on the road to recovery. I encourage everyone out there who suffers from autoimmune disease to at the very least do a bit of research on Lyme, and consult with a doctor who specializes in Lyme. Even if you don’t recall ever being bitten by a tick or “live in an area where Lyme does not exist” (which is what I was told by an urgent care doctor 20 years ago when I had a tick imbedded in my arm and turns out when I contracted Lyme)
This is the first time I have ever responded to a blog, but I woke up this morning and started reading your readers’ comments, and felt compelled to write this, in case you or another of your readers can benefit from my struggle. I pray that God brings you peace, comfort, and healing. Know that you have helped and encouraged more people than you can possibly imagine by sharing your life and recipes with us. God bless you and your family.
Naomi says
For whatever it’s worth, I second this. Lyme does indeed present as autoimmune disease in many many patients. Lyme specialists’ offices are filled with people who have been misdiagnosed in this way. They are also filled with people who have tested negative on the Western Blot Lyme test and who have been dismissed by their general practitioners. Be kind to yourself. See a Lyme specialist. Your other doctors mean well, but Lyme is a relatively new disease and what your doctor was told in med school 10 years ago is not standard of care among Lyme specialists today. You need someone in the trenches. Not just any doctor, even an infectious disease doctor , will do. To find a Lyme specialist check out http://www.ILADS.org. Its the international Lyme association. They know what they are doing. After many years, I am Lyme free and finally healthy enough to expand my family. God Bless.
Elana says
Thanks for your comment Naomi. Please see this post for more information on Lyme disease:
https://elanaspantry.com/new-approaches-to-neurological-conditions/
Have a great day!
Elana
Rochel Leah Deitcher says
Elana, wishing you a Refuah Shelaimah and the strength to get through this difficult time. Thank you for being so open and for sharing your story with us.
Elana says
Thank you Rochel :-)
Sonia Lightsey says
Elana, I do not know you at all, except for having discovered your website and bought your books. I am truly sorry to hear about your health issues. A very good friend of mine, living in France went through something very similar. She was diagnosed with breast cancer several years ago; survived that to then be diagnosed with MS a couple of years later. I was shocked to hear this and how taxing this illness is. My company has been sponsoring the MS 150 but I never really knew anything about it. I just wanted to let you know you are in my prayers. Hugs. Sonia
Elana says
Hugs to you Sonia :-)
Julie Haws says
Elana, I am sorry to hear about the MS relapse. I am a registered dietitian and I have done a lot of research on diet and MS. There has been a lot of promise with the Swank diet. You should really watch this short video on it. http://nutritionfacts.org/video/treating-multiple-sclerosis-with-the-swank-ms-diet/. If I had MS I would follow this diet.
Elana says
Thanks for your feedback Julie.
Kate says
I’ve been on Swank and it’s made a huge change in my life . . . it requires exceptionally low saturated fat <15 grams a day) and overall fat intake (<30 grams total fat) and, as such, is out of fashion right now.
The other thing I do is take vitamin magnesium, D-3, fish oil, evening primrose oil (part of the total fat consumption on a given day), and the "golden five" of anti-inflammatories: ashwaghanda, green tea extract, milk thistle extract, bacopa, and curcumin.
I've had an MS diagnosis since 2003 (probably an active case since 2001) and am still doing well, but I have to say that I think it's a really individualized disease: what works for one person may not work for another (for instance, I eat a fair amount of non-fat, unsweetened yogurt, and it seems to help a lot, but I, apparently, have the gene for digesting milk–in other words, what causes inflammation in some people is not the same as what causes inflammation in others, at least in terms of wheat and dairy).
I also think it's easy to reach for a "solution" to the illness and blame folks who aren't being "pure" or aggressive enough in their own treatment/lifestyle, when the fact of the matter is that we don't really understand this disease very well, and it's unpredictable, sneaky and tough, and even the person who adheres to the strictest diet or most severe eating regimen may be felled by a flare.
I'm lucky that I've found things that work for me (right now) and can still walk, life weights, distance swim, work, etc., but if there's one thing I've learned from this disease is that it's hard to predict the future, anticipate every trigger, ward off every flare.
Be gentle with, and on, yourself, Alana. Kind wishes for your recovery.
SUSAN BONDURANT PRIBBLE says
Elana, you are so beautiful and have such a like spirit about you. Having searched the internet trying to learn the “new chemistry” of baking and cooking, I landed on your site and fell in love with your recipes and the way you present. I had no idea that you were having a season of feeling less than close to 100%. My heart goes out to you and to your family and close friends. When we are not at our best, they also suffer with us. As wives and mothers we always think we have to do everything for everybody. We have to learn that is not so and they survive just fine and learn a bit more independence. I’m happy to hear that you have taken time and through slow measures you have come through the eye of the needle so to speak, and are managing much better!!! May you continue to be blessed as you have blessed others! Bear hugs and heartstrings love from one sister riding this planet to another!