There was a guy eating French fries and drinking a milkshake near my friend and I while we got tea at Whole Foods yesterday. He did it so casually. There was another woman eating her salad while staring at her phone. I can’t help but stare.
I’m still thinking about their casual eating long after they probably have.
What is it like to not be able to eat hardly anything? I’m sure people wonder. I haven’t shared much about it mostly because it’s incredibly painful.
For anyone new to my life, I used to be a cooking teacher and nutrition educator. I spent years developing recipes, menus, and curriculum for adults and kids.
I’d spend my work day thinking about food, buying it, preparing it, teaching it, and eating it.
Now? I spend all day thinking about the few foods I can eat and which ones I can get away with it.
The saddest part about all this is that I actually love healthy food.
I grew up in a mostly meat and potatoes household like most Americans in the 70s and 80s. My dad has always been a health-nut so we moved over to chicken and fish earlier than most. His parents - my grandparents - were into juicing. My Bubby, his mom and the woman we all got the Lynch Syndrome from (thanks Bubby!) made her own yogurt. She always had these tall glasses in the fridge that she cultured herself.
Her husband, my Papu Sol, was first generation Greek. His mom had showed her how to make homemade yogurt (hmmmm…I think I need to get on that.).
She also had four cancers. She had ten surgeries in her lifetime starting in her 30s. SHE SOMEHOW LIVED TO 88 years old! She never had chemo or radiation which do a number on the internal organs, but still! It does give me some hope.
But then I come back to: how the hell am I going to live for years on a mostly liquid diet?
Mentally, I do all right when I’m in my cocoon. My parents have a ton of GI issues so they eat very simply. They eat completely different than I’d like - steak, meatballs and chicken are their staples - I rarely look at their food with any desire.
I like salads, roasted vegetables, tempeh, tofu, beans! Oh I love beans so much. Cruciferous vegetables are my JAM! I used to eat an entire sheet pan of roasted cauliflower by myself in one evening.
I couldn’t always eat fibrous foods. When I was young and dealing with the inflammatory bowel disease (IBD), I had to avoid nuts, seeds, popcorn, raw vegetables and often, cooked vegetables. Everything had to be bland.
During the last year I had IBD symptoms, at around age 26, I decided that the doctor’s recommendation to avoid ALL fiber didn’t make sense. I studied fiber and discovered there are two types of fiber: soluble and insoluble.
Insoluble is that stringy stuff you find on celery. It doesn’t break down in water.
Soluble fiber is what you’ll find in oatmeal. Most plant foods have both! But they have more of one than the other.
When I was having a lot of issues with the IBD - we call it being in a “flare-up” - I’d avoid all fiber.
But when I was only slightly flared, I started experimenting with peeling vegetables and de-seeding them. I’d make a big pot of soup with a ton of cooked vegetables. Even if I couldn’t get all the vegetables in me, I was still getting their nutrients. I ate oatmeal and watery quinoa which has the soluble fiber.
This endocrinologist that I just met and love actually ACKNOWLEDGED that my chicken broth was likely helping keep me alive. That was the first time I had a doctor validate my methods.
I hope to share these recipes with you sooner than later! First, I need to get through this rough patch, find out what’s going on with my dad, and see if I should fly out of state to meet with GI docs. There is one in San Francisco I may start with…it’s just so much hassle for me to travel.
I get scared now! ME, Julie Negrin, gets scared to travel. Hell, I get nervous leaving my cocoon for a few hours, let alone overnight. I get scared of eating anything new! Even these juices my friends made me.
It scares me how scared I get.
Let me explain: I don’t get scared of a lot. I had almost no phobias growing up. I’m a bit of an adrenaline junkie - though that’s changed a lot. While living in San Diego, I did discover that driving on anything that has steep drop-offs makes me very nervous. That’s new in my 40s. I drove to Borrego Springs to visit a friend who was RVing around the country (where are my photos from that trip? That was so cool).
A good portion of the drive required driving through Grand Canyon type roads. I was terrified! I drove around 25 miles per hour the whole way back much to the dismay of the people behind me. I have no idea where this fear came from! But I had it again when I drove to Discovery Park a few years ago with the boys.
Now I have fear about food! I get so scared that there are hidden seeds in something. I have dreams where I eat regular food, then realize what I’ve done and start spitting it out.
The hard part for me is that I don’t know right away if something is going to be a problem. Sometimes things go through ok. Other times, I have pain and I’ve hardly eaten anything!
It’s not easy to live in our culture with this limited diet. Servers and other food vendors make assumptions about why I’m ordering something special (I am NOT following some trend. I repeat: I am NOT FOLLOWING SOME TREND). Sometimes they are lovely. Sometimes they are dismissive. I’ve now learned that it’s best if I say something like “I lost organs to cancer” so that they take my requests seriously. Otherwise, I’ll end up with broth that has diced scallions on top! Or, they try something else that won’t work.
Lately, my cravings for real food have been worse than ever. I’m on Year 3 of this fucked up diet! Plus, now that I can’t eat a lot of eggs, I don’t feel full often. Add in the fact that the store-bought vegan ice cream now makes me gag - if I try a new flavor or consistency there is a chance I’ll be fine - so I can’t feel full from that.
The pain has been so bad lately, I’m nervous to even eat my safe foods!
I’m also just sick of it all. I’m tired of the puddings, the lemon curd, the doughnut frosting. It’s all disgusting to start with when it’s the bulk of the diet (I promise you, it’s not fun. Some people think it’s fun….). I wasn’t even a sweet tooth all these years! I prefer savory foods. I didn’t eat any candy but chocolate between 2011 and I don’t know, last year? I had to add candy back in because I needed something in my purse in case my blood sugar drops.
I don’t eat much candy anymore. I never liked it much in the first place. Kids thought I was weird because I didn’t like a lot of candy when I was a child. Now, I prefer sipping a chai tea or lemonade to keep my blood sugar level. My messed up adrenal glands make my blood sugar drop faster than it did in the past so I have to be vigilant about this.
It’s taken me a LOT of trial and error to figure out how to leave the house for hours at a time. I often don’t eat anything before my appointments because driving around after a meal means pain if I can’t get to the bathroom.
It’s been getting easier and easier to go longer and longer without food - this is not a good thing regarding my longevity but it is helpful when I have to leave the house for awhile. I don’t feel actual hunger anymore. I can go all day on a chai tea and a small protein drink.
My body is growing used to this diet. This makes me nervous but also relieved.
When I’m in a place where other people are eating foods, though, it’s tough. When I’m waiting by the deli to get my salad dressings that I drench my avocados in because they also make me gag if they are plain, I start drooling over the kale salad and the beans.
When I see someone eating French fries - oh how I love French fries, they were my favorite junk food for sure before all of this - I have trouble concentrating on the conversation with my friend.
The hyper-awareness of how much I can’t eat is most noticeable in restaurants or eating areas. Bestie and I realized that we should probably get tea in a proper coffee shop next time!
The grocery store isn’t hard for me anymore because I go so often and most of it’s packaged food. I try not to look at the deli food in the health food stores. I can’t BELIEVE they finally bring a health food store to the area my parents live and now I CAN NOT EAT ANY OF IT.
I see the healthy snacks at Starbucks, the Poke bars, the gluten-free waffle cones and I’m like SERIOUSLY!? For years, there were so many things I couldn’t - or wouldn’t eat - because our culture hadn’t gotten into the health-food craze yet.
And now? Now that it’s finally available, I can’t eat it?
It seems like a cruel twist especially since my colleagues and I are the reason those healthy snacks are now for sale! Why kale is a cool thing now! Why nutrition is “hip” instead of being fringe and weird.
It’s so hard to imagine but man, I got a lot of shit for studying nutrition in the 90s. Why? People would ask. Why are you studying THAT?
So we hollered. I taught. My colleagues crafted policies. We attended conferences. Cooking became cool. We moved the needle. People started blogging. And the world woke up.
I tell myself that I’ll end up living longer because of this diet, it’s because I’m not putting grains and other starches in my gut, so the cancer won’t grow. That there is a ton of data that people who under-eat live longer.
Both are probably true.
It still sucks though.
The thing that kills me the most? I didn’t know.
I didn’t know my last real meal was my last real meal.
I didn’t know my last piece of birthday cake was my last piece of birthday cake.
I didn’t know my last bite of roasted broccoli was my last bite of roasted broccoli.
This all happened so slowly, I didn’t know that it was getting worse.
And that it was likely that it won’t get better.
I do still hold out hope. But I hope to be able to add in a little roasted yam. Or eat eggs NOT in the broth. Maybe even eat fish again!
My food dreams are simple now.
For now, I lay in bed recovering from a busy but lovely weekend. I’m debating whether I should eat any eggs today. I need about two full days off of them per week otherwise, things back up and create a traffic jam in my very narrow and twisted intestines.
I don’t know. I don’t know if there are any answers out there. It seems statistically unlikely that on a planet of 7 billion people, NOBODY has figured out SOME solutions to these kinds of issues.
That’s why I hold out hope. I know how incredibly antiquated our medical system is, especially when it comes to gastro issues.
Maybe if I share my story and my GI tips, the right person will link me to the right inventor. Or researcher. Or resident. Or doctor. Who the hell knows who will have discovered something that could help me!
I’ve been so nervous to share GI tips and my story more publicly. It’s a taboo topic! Tummy problems. Poop.
If I don’t talk about it, then who will? So many people suffering with gastro troubles. What if I’M the person that THEY are looking for? That could help THEIR lives improve?
Then how can I NOT share?
It’s a beautiful thing when patients help other patients. I’m working on that concept too.
Fucking brain. Hey, let’s give this girl with a TERRIBLE immune system and GI a super over-active brain.
Worst match ever.
I see how happy I was in my post yesterday and it makes me happy that I had a good day. The joyful moments are SO good now, I go a little overboard with my exclamation points.
But I have to celebrate the good moments when they happen!
Oh, to eat a piece of birthday cake again. Or, shove my fork into a huge bowl of salad. Huevos Rancheros at shit, I forgot the name of my favorite restaurant in San Diego. Damn it. Ahhh doesn’t matter anyway.
I should get some things done.
At least I had a good weekend.