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.
Sheila Glazov says
Dear Elana, I appreciated your post and have enjoyed your posts, recipes, especially the ones for the Jewish holidays, for many years! When I read your post, I thought about the many things I cold write to you. However the traditional Misheberakh prayer for the sick kept returning to my thoughts. With a heartfelt wish for your health to improve to enjoy yourself, your husband, sons, family and friends!
Below is the historic basic Misheberakh prayer for the sick:
“May the One who blessed our ancestors, Abraham, Isaac, and Jacob bless and heal “Elana.” May the Blessed Holy One be filled with mercy toward her to heal and strengthen her, and to keep her alive, sending her from Heaven complete healing of body and spirit, along with all those in Israel who are ill. It is the Sabbath, so we should not cry out, but healing will come speedily. May it come soon, and let us say: Amen.”
With warmest regards,
Sheila Glazov
Heidi Aquino says
So thrilled for you to have shared. It takes the power and shifts it. Also am happy you had the resources you needed to care for yourself with therapies and healing. What you have gifted me alone has been a really tremendous blessing. From sharing the chocolate chip cookies years ago with gluten eating friends who enjoyed them to having a safe place for my son to choose recipes from. On our family’s journey the extra tasty treats were too much for me, so those foods fell out of our diet. My son, now 13, when he was 10, began making treats for the family from your blog. We all appreciate those treats!
May you be blessed in your continued journey to live life and bless others. May the richest blessings of the Lord fill your heart and home and your family as you continue on.
Much love,
-Heidi and the AquinoClan
trish says
Elana, thank you for your expression of love and vulnerability…it is truly inspirational and a testimony of light and joy in our darkness. This is one of my favorite quotes:
If there are shadows, there must be light somewhere. I follow the shadows as much as i follow the light. For it is in the dark places that my light shines brightest! -Benjamin Allen-
Holding space in my heart for you to shine so that we may all continue to receive the gifts of your light!
with metta
tRISH
Betsy says
Elana, I’ve been following your blog and your journey since my first debilitating rheumatoid arthritis inflammatory setback two years ago. I didn’t know what hit me. I couldn’t move without every joint feeling like shards of glass slicing into my tendons and ligaments. I’m an active person enjoying Zumba, step-aerobics, Pilates, and yoga. This all stopped because I hurt so badly and couldn’t sleep at night. By the time I got a diagnosis of RA, my muscles had atrophied and I lost 26 pounds. When I found an RA doctor, she insisted I would never feel well again and first prescribed an anti-malarial drug which, along with going totally gluten-free, following the Paleo diet, and reading about pro-biotics, pre-biotics, and changing my gut microbiome, I was able to get the inflammation under control. I’ve since found another doctor who is willing to work with me on diet, yoga and meditation, and various alternative healing methods. I have been in remission for over a year, feeling more energetic and non-toxic than I did when I was in my 50’s. I’m back to my gardening love, sewing and selling my creations at our local farmers market, and my gym activities. It’s taken two years to build up my shoulder and arm muscles again allowing me to do plank and down-dogs. I’m 69 years young and appreciate every morning sunrise knowing that I have trials to face in my journey.
You and your have been in my prayers since I started following your journey two ears ago. Thank you for your inspirational sharing.
Violet says
Dear Elana,
I am very sorry for the health issues you have been going through. I ask that you take a leap of faith and contact Tom Paladino 805-364-3051 for scalar healing at selfhealgo.com.
I believe he can heal you.
Many blessings,
Violet
Wendy says
Dear Elana
I do not know what to say.I just wish you and your family a lot off love,strenght and health.
??
Stephanie says
Thanks for sharing your story! I also deal with the diagnosis of MS, since 2001. I think your story of slowing down and taking time for your body to heal is important. Not just for those with MS but everyone. It took me a while but I learned when to listen to my body and give it the time it needs when my body needs it. Those who love me and know my struggles, understand. Those who don’t understand, don’t matter.
Sarah says
I can’t thank you enough for sharing (and also getting me to enjoy baking)
The power of saying No. And without guilt. To take care of ourselves. To rest.
Yes, I understand.
God bless, thanks for the update, we care about you Elana–
Linda says
Elana, your story brought tears to my eyes and my heart. We think our own problems are huge until we hear of stories like yours to open our eyes and allow our feet to touch the ground and realize there are people, like yourself, that are carrying a much larger burden. Thank you for opening up and sharing your deepest secret with all of us. You are a true blessing. I will pray for healing for you and that God gives you the strength to continue the glorious work He has put you on this earth to do. Blessings…
Juliet says
Thank you for this post. I know what it feels like to have a condition that is very unpredictable and scary. It does however force us to take good care of ourselves, live in the moment and really appreciate the good healthy periods of our lives. When I read this last post I felt a lot of similarites. Although I suffer from uncontrolled epilepsy, it feels that our approaches are somewhat similar. I am eating very low carb and pretty much Ketogenic. Nutritional approaches are far more popular with children’s epilepsy than Adult epilepsy and here in the UK there aren’t any neurologists who really promote Ketogenic diet for adults. But I’m determined to help myself and thanks to recipes and the paleo/lchf/gluten free community online I feel very supported. This afternoon I made your cheese chilli muffins and my husband and I pretty much devoured the whole tray. Thanks for being so open and offering us so many great tips and delicious recipes. Its good also to slow down, say no and live in the moment. Remember you are not alone.