Practical advice and personal wisdom from a four-time cancer survivor.

I am a disabled American – and I’m scared

November 2, 2016 by Julie Negrin

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This is me before a life-saving colonoscopy last week – covered by my Obamacare. My doctors are also trying to determine why I can’t eat solid foods.

I didn’t want to write this post. I really didn’t. I’m old-school and believe voting is personal business. But I’m petrified this year. This election, my fate hangs in the balance. This time, I’m fragile, vulnerable and dependent on the government for the first time in my life. I’ve had 4 unrelated cancers by age 42 and many, many complications that prevent me from working. I have a genetic disorder called Lynch Syndrome that makes me at risk for EIGHT more cancers.

This is the hardest sentence I’ve ever had to write:

My name is Julie Negrin and I AM A DISABLED AMERICAN.

This election will directly impact my life and my HEALTH. I am terrified I will lose my health insurance. If I can’t get to specialists…well I don’t like to think about it. I’m scared I will lose my disability hearing next year. Controversial government social services are now my lifeline.

This election could literally be life or death for me.

For the past 20+ years, I didn’t work in corporate and set aside a small fortune. Instead, I dedicated my career to educating children and families how to eat healthier. Long before it was “hip,” I became a food educator and activist. According to Social Security, I’ve been paying into the system since the 1980s, when I started working in a law firm while still in high school. I worked my ass off over the years, getting a master’s degree, writing a cookbook, lobbying for kids. I’ve had so many jobs, I’ve lost count. I’ve paid my taxes diligently every single year. And now, I’m stuck in a body that doesn’t function correctly and I’m living with my folks. I work SOOOO hard to get healthy. Every. Single. Day.

Many people think people like me are looking for “hand outs” when nothing could be further from the truth. I want to work so bad. So bad. Get back to helping people. I’m that strange breed that LOVES working (just looked at my work history online!). But I can’t. I can barely get to all my doctor appointments each week.

I have 8 appointments this week alone: gastro at Swedish, GI expert at UW today and tomorrow, GI Oncologist at Fred Hutch, plus my weekly “regulars” which include two days of IV fluids, acupuncture, visceral massage and therapy. All covered by my Obamacare for a very reasonable amount each month.

I can’t survive without my Obamacare coverage.

Also, it’s safer for ALL OF US. It sucks to think about but cancer rates are rising, a LOT. These programs are in place for you and your loved ones, just in case….. If it can happen to me, it can happen to anyone. People need to understand how important it is to keep these programs in place.

This is not something I want to share publicly. I’m ashamed of having to ask the government for help – I used to be the one working in non-profit helping other people!!

I have to get over that shame. I feel it’s my obligation to speak up. To remind people that the Congress races – and Presidential races – are still tight. Your vote can make a difference for ME. And 20 millions other people on Obamacare.

Your vote could HELP me. Or HURT me.

One party is dedicated to keeping me insured. One is not.

Please just consider this before filling out your ballot. Think hard about the choices you’re making, not just for yourself but for all of us.

This post may come too late for a lot of people but perhaps it will impact a few voters – I didn’t have the balls to share until now.

I’ve dedicated my entire life to helping others get healthy. And now I’m the one who needs help.

MY LIFE IS IN YOUR HANDS.

Much love, Jules 

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Categories: #cancerteacher, Cancer, Community, Life Lessons, Lynch Syndrome, Recovery, Side Effects

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  • Hi, my name is Julie Negrin. I’m a nutritionist that’s battled 4 cancers: melanoma, ovarian, colon, and endometrial cancer — the last 3 all at once — due to a genetic disorder called Lynch Syndrome. In the three years since I lost four organs, I've been slowly transforming to "disabled" after living a mostly able-bodied life. I've also had a bunch of other complications including not being able to eat solid foods.... Stick around if you're not afraid of the ugly bits. Much love,

    Much love,

    Julie Negrin

    About Julie & Cancer Teacher

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