The Illness Superstore
It was the Q and A at my most recent Food Solutions event—Navigating Cancer. A woman, probably in her 30’s with stage 4 cancer, asked, “If I didn’t come to this event, where could I get this kind of information and all of these resources?” For a moment I was speechless (a rarity). I then replied, “I wish I had an answer for you. But I honestly don’t know a place to send you where you can get A-Z information on an illness you are living with.” Not that Food Solutions offers all of that information, but if you combine the experiences, both personal and professional, of all the experts in the room, you pretty much had the A-Z.
Then with my typical wit I added, “What this country really needs is a Best Buy for illness. Instead of electronics, you could come to our superstore and have, at your fingertips, every resource available to you for your disease.”
I have been thinking about this question (and my answer) for several days now. It’s really not a bad idea. So I figured for the purpose of this essay, that I would create my Illness Superstore on paper (very rough draft).
Step 1: You get diagnosed with an illness (a separate conversation)
Step 2: You find the Illness Superstore near you
Step 3: You call to make an appointment with your disease specific “wellness navigator”
Step 4: You arrive at the store, are greeted by your navigator and are walked through every section
Isle one—Western medical care resources for additional opinions (never good to go with one opinion)
Isle two—Integrative medical care resources for additional opinions (always good to have a medical expert who combines Western medicine with more alternative approaches)
Isle three—Alternative care options (such as energy healing, Chinese herbs, etc.)
Isle four—Food solutions
Isle five—Exercise solutions
Isle six—Psychological solutions (we all need that!)
Isle seven—Supportive organizations (not for profits, etc.)
Isle eight—Additional resources such as books, links, Smart Phone applications
Isle nine—Optional “buddy pairing” where you will be matched with a person who is going through the same thing you are—sucks being alone
Step 5: Create a plan of action with your navigator and implement
Step 6: Decision making and action!!!
Step 7: Regular follow-up with your navigator
The problem and a real one albeit: We are sick and credible resources are hard to come by. I know first hand! I live with a kidney disease that took 10 years to properly diagnose. If the Illness Superstore existed, perhaps I wouldn’t have had to: (1) exhaust myself with the “BEST DOCTORS” in NYC (who weren’t the BEST at all); (2) have two unnecessary surgeries; (3) spend 5 days at the Cleveland Clinic in attempt to properly diagnose this disease gone awry (no luck there); (4) spend countless hours researching; (5) suffer emotionally needing to see a therapist to help manage the psychological stress of being sick and not having the right support or answers. And that’s just the tip of the iceberg! To boot, the stress this caused my family, including my husband, my kids and my parents is still hard to swallow.
I feel for this woman who asked the question, on a very deep level. And I wish the answer was an easy one but it is not. When you get sick, consider yourself hired for a full time job that you don’t want. After all that I have been through both personally and with my clients, I have this advice for you if you get diagnosed with an illness (cause we don’t have an illness superstore YET):
- Either decide to be your own advocate or enlist someone to do it
- Seek an integrative internist who can help steer your ship
- Go for a second and third opinion from a specialist
- A doctor’s affiliation with a teaching hospital is a good thing
- Consider having a fellow on your team of doctors*
- Once you understand your treatment/healing options, research the heck out of them; don’t make any choices on impulse
- Align yourself with disease-specific associations and call on all of their resources
- Seek psychological support if you can
- BE GOOD TO YOURSELF and continue to do what makes you feel good
- And cry your eyes out if you need to. You are allowed. Life can suck
You see, when you get diagnosed with an illness, the first thing our healthcare system should do is appoint a navigator to a patient. But they don’t. In fact, they make the whole business of being sick as hard as it can possibly be. So that being said follow my pointers above cause I have been there (and I live the challenge daily). Hopefully I can shine a little light.
In the end, every one of my experiences both good and bad, has lead me to where I am today. As challenging as it has been, I wouldn’t trade it (well, maybe a few things) for my life is more enriched in so many ways. And I have the tools to help others in a unique way—from the eyes of a patient and a practitioner.
*Fellows are Doctors In Training (or DIT as I like to say). When I started with my current team of doctors, the lead nephrologist brought along a fellow. First thing I thought was, “I don’t want any DIT on my case. I have been through enough and want seasoned doctors.” Well, boy was I wrong. This DIT was the one who finally gave me the proper diagnosis after 10 years. He was fresh, curious and hungry!!! He is my hero!
October 24, 6:30pm
Eat NYC Celebrating the First National Food Day
At the Columbia Grammar and Prep School, 4 West 93rd Street, NYC
TASTE Samples from NYC restaurants offering locally sourced, healthful items. LEARN How local organizations are improving food systems and raising awareness. WATCH Keynote speakers Chef Sandra Lee and Stefanie Sacks MS., CNS and episodes of Avis Richards’ LUNCH NYC
Adults $25; Children $10 (all proceeds will go to organizations in NYC promoting school wellness). Please click here to register for this event.
Date To Be Determined
Transition Your Food Lifestyle 101
Gurneys Resort and Spa, Old Montauk Highway, Montauk, NY
Join pioneer Culinary Nutritionist, Stefanie Sacks, M.S., CNS for a discussion on the basics of making healthier food choices given the many challenges we face from personal lifestyle to illness. Stefanie will empower you with the knowledge and skills to get started on the road to wellness. Her inspiration will make a seemingly daunting task simple. You will leave de-mystified, armored with practical information and basic tools to get started.
I am deeply grateful to Terrence Meck, Ruth Fehr and the Palette Fund for their incredible support and partnership through the Food Solutions journey. Thank you to Urban Zen for their commitment to our cause and a special thanks to the Cancer Treatment Centers of America for your generosity.
Stay tuned for 2012...
As I continue to meet people in my field and learn more about experts, movements, companies and more in the health, food and nutrition related space, I feel eager to share what I have uncovered with you.
Millions Against Monsanto
The Organic Consumers Association’s Millions Against Monsanto campaign is celebrating Non-GMO Month (October) and World Food Day (October 16) with more than 100 World Food Day events nationwide, making it the biggest single day of action for labels on genetically engineered food in U.S. history.
Institute for Responsible Technology
The Institute for Responsible Technology is a world leader in educating policy makers and the public about genetically modified (GM) foods and crops. They investigate and report their risks and impact on health, environment, the economy, and agriculture, as well as the problems associated with current research, regulation, corporate practices, and reporting.
National Food Day
National Food Day will be October 24—in 2011 and in years to come. Food Day seeks to bring together Americans from all walks of life—parents, teachers, and students; health professionals, community organizers, and local officials; chefs, school lunch providers, and eaters of all stripes—to push for healthy, affordable food produced in a sustainable, humane way. We will work with people around the country to create thousands of events in homes, schools, churches, farmers markets, city halls, and state capitals. See above for the NYC kick off event that I will be speaking at!
Susie’s Supper Club
At the end of the summer I ran into an old friend, Rick Field of Rick’s Picks in my good ole hometown of Montauk, NY. I hadn’t seen him in quite sometime so I had never met his wife, Susie Cover. I was so excited to learn that Susie is Susie’s Supper Club. Please check out her products, new cookbook and services. You won’t be disappointed!
This show is inspiring and feel good for everyone who participates in the fight against hunger. Katie Stagliano is an inspirational 13-year-old girl who founded Katie’s Krops, a movement designed to gets kids to grow food and feed the less fortunate in their communities. Plus, my friend Ellie Krieger, New York Times bestselling author and registered dietitian made a surprise appearance. For more details on the show, recap episodes and other information, visit the Everyday Health website.
Grassroots Environmental Education
Grassroots is a New York-based non-profit organization founded in 2000 with a mission to educate the public about the links between common environmental exposures and human health, and to empower individuals to act as catalysts for change within their own communities.
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Sesame Rice Noodles Primavera
Recipe by Stefanie, Serves 8
- 1 lb. Rice noodles (linguine or fettucine), Can also use udon or buckwheat noodles
- 6 tablespoons sesame oil
- 1 tablespoon toasted sesame oil
- 1 tablespoon tamari soy sauce
- 3 tablespoons mirin
- 4 tablespoons tahini
- 3 tablespoons water
- 2 scallions, thinly sliced
- 1 large carrot, julienned
- salt, to taste
- 2 tablespoons black sesame seeds
- 1/2 Seedless cucumber, peeled and julienned
- In a medium pot, bring water to boil on medium. Add noodles and 1 tablespoon of sesame oil and cook until done (about 8-10 minutes). Strain and run under cold water.
- In a large bowl whisk remaining oils, soy sauce, mirin, tahini and water. Prep vegetables.
- When noodles done, add to large bowl. Toss in dressing, vegetables and sesame seeds. Salt to taste.
Stefanie Sacks, M.S., CNS is a Culinary Nutritionist who works hands-on with individuals and groups in transition to a healthier way of eating as a food counselor, nutrition educator and chef instructor. She has been studying food and healing for twenty-five years, has her Masters of Science in nutrition from Columbia University, is a Certified Nutrition Specialist and is a graduate of The Natural Gourmet Institute for Health and Culinary Arts. In 1999 she launched her private practice working one on one to help prevent illness and restore health through personalized nutrition therapy and culinary guidance.
In addition to her private practice, Stefanie created Food Solutions: A Gateway to Healing - an innovative culinary nutrition education workshop series that represents a seamless translation of the most recent disease specific medical science to a client’s own plate with the kitchen as the centerpiece of education. Hosted by Donna Karan’s Urban Zen Foundation, the series was a huge success in 2010 and continues to move forward. In addition, Stefanie speaks and conducts workshops for adults and children at community centers, schools and universities, corporations, medical organizations and health and wellness expos. She also works with many organizations on food and nutrition related projects. Continue reading.
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