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.
Pam says
I wanted to tell you, Elana, I am very thankful for you.
Carole Pepin says
I was very touched by “piece of mind” you are a very brave woman and I admire you very much.
you have helped me so much, there are 5 years old when I had to banish all the cereals and dairy products from my diet because of pain problem.
I learned to make bread with you, to love to eat again.
In you, I feel all this generosity to share with us and I can not help but say “THANK Elana”
Holland Franklin says
Dear Elana,
Thank you for your moving, honest account! It is hard to be vulnerable and many don’t take the risk, but it allows all of us to be more honest and authentic in our lives – which is surely a part of healing!
I want to share a different point of view in case no one has shared this with you up to now. I have come across research that shows that some who are diagnosed with MS are sensitive to electromagnetic and radio frequency stress. Here is a video from this researcher’s site that directly correlates symptom exacerbation with exposure to dirty electric it; her name is Magda Havas (www.magdahavas.com): https://www.youtube.com/watch?v=xdtIPb3Veuw.
I have been electrosensitive for nine years after over-exposure to a wifi router. Electrosensitivity could be described as an aggravated response to electromagnetic or radio frequency signals, sort of like an allergy. I can’t tolerate much time in a home with a strong wifi system, for instance, or an airplane with wifi. My father has MS. Sometimes when I am in the presence of strong cellular signals of some sort, my movements, emotions and cognitive reduction is very similar to what I saw in my father earlier on in his disease. When I am away from these signals, all the symptoms disappear completely. You mentioned a worsening of your health after flying – is it possible that the high amount of exposure to digital signals or other aspects of dirty electricity may have affected you during the flight times and in airports, or in hotel rooms?
It has been said by scientist and MD researchers that when in the presence of strong EMR/RF fields, the blood-brain barrier is weakened, which allows for various toxins to enter the brain. These signals also can interfere with electrical transmission within the body whether or not one already has a pre-existing health issue. Some people are inherently more sensitive to these things, some become more sensitive due to phenomena such as head injuries. There are many sites which discuss electrosensitivity at length.
Some people develop various issues or issues worsen after Smart Meters are installed on their homes – in many properties, the meters are mounted on the outside of a bedroom wall. Use of a smart phone or tablet is a close-up immersion in EMF and RF signals.
There are many sources of exposure which can become an issue for anyone and particularly for someone who has some sort of neurological vulnerability.
There are environmental specialists who are trained to detect levels of exposure which may be affecting health. Many homes have a mix of issues with wiring, or other EMF issues to do with the property, mixed with other sources of exposure that we add to a home, such as wifi, cordless phones, alarm systems, etc. A lot of people’s health problems are solved or greatly improved once safe levels of exposure are established in the home.
If this is something you are unfamiliar with and you would like more information, feel free to contact me. I have had to learn a lot in the years I’ve experienced electrohypersensitivity, and am happy to pass on the info to others.
Many blessings, and thank you so much for all the gifts you’ve given the world so generously!
Kris says
My heartfelt thanks for your honesty. You have touched me with your truth. Please know you are in my prayers.
Marsha Karr Rabinovitch says
Hi Elana,
I was very moved by your article, “A piece of Me”. Your courageous sharing of your health challenges, your successes living with the hand you have been dealt and your approach to living a full creative life, encouraged me to write about my own journey with Parkinson’s Disease. I have included an article I wrote for the Parkinson’s Post Summer Newsletter. https://nwpf.org/media/441667/POST-Summer-2016-Final.pdf. I know that the response from your loyal readers has been overwhelming and I don’t expect a reply. I hope you enjoy reading about my journey as much as I enjoyed yours! if you know someone who would benefit from reading it, please feel free to share my article with them.
Cheers!
Marsha Karr
Erin says
Thank you for sharing your human experience. We may not know the struggles those we meet are facing, and they may appear to be free from them, but each of us faces struggles of one kind or another.
How blessed are those who have the resources to access treatments and relief from our respective struggles. Let us not forget those who do not have access to quality foods and care, support, etc.
Your post reminds me of a well known saying: “Be kind, for everyone you meet is fighting a hard battle.”
We are all in this together. Compassion and humanity are a lifeblood.
kathleen sutton kruchell says
Can I just say I love you? <3
Mary says
I cannot tell you how much this entry has touched me. I have been working to find my way with a diagnosis of inflammatory disease of unknown cause. With your blog I have been finding my way to being so much more able to live my life. When you share how hard it can be and how you haven’t talked about it, you tell my story. My outside looks so very healthy because of wonderful nutrition so no one knows the struggles that go on from day to day. Then I read your entry and I don’t feel so alone. Thank you in a huge way.
Ann Otten says
Thank you! I have similar symptoms but no clear treatment! Did you find Neurologist helpful or what kind of doc for all those things? You inspire us all and I think it is our turn to pray for you brave lady! So,many quake docs. How do you find a good functional one? Love Ann
Jo Anne Nackoul says
Ann, I just found the site ifm.org. At the top right corner there is a place for you to put in your zip code to find a doctor of functional medicine. Hope this helps you in your search for “health”.
Denise Penta says
Thank you for posting the ifm.org site. I am diagnosed with Hashimoto’s after 30-40 years of doctors telling me I’m okay, but my thyroid needs adjustment. Been taking low doses of levothyroxine and lost lots of vocabulary and the ability to think. I am 65 and stopped working 10 years ago because my mind went blank too often. Now I have solid nodules, am fat, little hair, etc. This didn’t have to happen.
I finally (with what they diagnose as severe Adult ADD) started getting off a few medicines by choice (medical staff said don’t) and slowly am feeling better. Taking probiotics and slowly building into gluten-free, sugar-free and Paleo style eating. There is so much to read out there and it ALL IS GUT-BASED.
Lea says
Hi Elana,
You are such an inspiration – not just your creativity and dedication to helping others, and also for your willingness to share your personal challenges.
Sending you love and a great big hug,
Lea xx
Gina says
I read your post and I want to recomend to you to read about “Donna Eden” and her Multiple Sclerosis. May good health continue for you.