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.
Samantha says
Sending you vibes for continued health and healing. You and your site always bring joy and deliciousness into my life. Thank you for all that you do.
Alex wallace says
Your honesty and bravery have always been inspiring. Truly.
-Alex
Irene says
Wow. Totally love that you are keeping it real.
I love your site. When you don’t post, I always worry about you. I’m always wishing I could do something for YOU. Thanks for sharing and I hope you know that you have complete strangers rooting for you.
Elana says
Irene, thanks! You’re not a stranger, you’re part of my online family.
Christine says
You’re an inspiration to us all….thank you for sharing your story, your gifts and your heart.
Judy S. says
Thank you, thank you for telling your story! A friend sent the link, and it was so encouraging to read of your experiences. I’m definitely signing up for your newsletter.
I was diagnosed with MS in 2009 at age 55. In 2010 I did a Candida cleanse diet for a couple of months which really helped eradicate some symptoms like brain fog and the burning sensation in my limbs. I have remained gluten-free and recently did a strict AIP diet for 2 months last fall. This was my second time trying the AIP. Neither time did it seem to make much difference in my symptoms.
My walking still has been deteriorating over the last year. I have also experienced severe depression and anxiety two consecutive years from October-April (both years this happened while I was doing the AIP.)
A couple of years ago I briefly tried homeopathics recommended by trained chiropractors to treat Lyme disease. However, this made MS symptoms worse. (I am also very drug-sensitive).
I’m open to any recommendations!
Victoria says
Thank you so much for this post. Your life appears perfect and easy based on a lot of what I see on your blog posts. I try to ask myself “What would Elana do?” a lot of the time as I’m struggling with a recent autoimmune diagnosis. Though you are still inspirational to me, it is also comforting to know that it’s not “easy” for you. That you too struggle like the rest of us and are human. In fact, it makes you more inspirational to know that it also takes strength of character to stick to a pretty strict diet that most people can not understand. So, thank you for sharing.
Sue says
I am praying for you, every day. I have been battling RA for 35 years so can understand the ups and downs of autoimmune disease and how it affects our families and lives. Just in the last 2 years my world has become very small also, but Elana life is good! Your recipes are my favorites, hands down. My grandchildren love to bake with me and always choose one of your recipes. Keep up the “good fight of faith” and know when you get to feeling down and discouraged someone is out there praying for you.
Blaise Carrig says
Elana,
I appreciate you sharing your journey, difficult as it has been and fragile as it can be. As many have said here, your story is touching and your directness and strength inspiring. I wish you a smooth path forward.
Ann says
Beautiful. Absolutely beautiful. Thank you for everything that you’ve graciously given us through your journey and challenges. I’ve followed you for 10 years and truly appreciate your talent, hard work, and deep family love. My wish for you is that the effects of MS, Hashimotos, and Celiac are thrown deep in the shadows of your life and that you feel better, stronger, and start to thrive again!
Carol Straquadine says
Elana, I would humbly ask you to check out two things. First is Anthony William. You can find out about him and his book at http://www.medicalmedium.com. He talks about mystery illnesses of the body (things doctors can’t figure out yet) and explains them. He gives a protocol that works! You can also listen to free talks on Soundcloud. Here is one I’d suggest. https://soundcloud.com/mm20-595688359/epstein-barr-virus-revealed. He is also on Hay House Radio.
If you are in constant pain, I would really suggest a small machine that is an offshoot of PEMF technology. I believe it’s called ICES. Electronic Pulse or micro-pulse. The inventors name is Dennis. There are YouTube videos with him. I purchased a very expensive PEMF machine, but this is superior to that and was around $400.
There is more I could share if you’re interested.