Stina’s Fresh Food Hack For Sickle Cell

The change from lots of packaged foods and fried drive-thru foods to eating mostly fresh veg(etables) and fruits changed my health and life for the positive. I’m sharing this story about how changing my diet positively impacted my Sickle Cell. I hope that the story will resonate with someone else with a chronic illness or even those without and inspire them to try adding more new fruits and vegetables to their meals and snacks. The main point is all about more veg and fruit! 

I come into this conversation about food as a writer and designer. I am not a medical professional nor a nutritionist. I am a cis-gendered,  black woman, near 50. I am living with: Sickle Cell Disease (SCD), hearing loss, dyslexia, and vision impairment. Like everyone else, I am extraordinary and not special at all.

I have always loved fried foods, fast foods, all the universe of candy, pies, cookies, and cakes. At a young age I had a holistic healthcare doctor tell me I should pay better attention to the number of sweets and breads that I ate. I completely dismissed it as some kind of social bias and didn’t see or understand any connection between the food I ate and my health. In high school I had terrible acne, digestive issues, and a terrible time concentrating in school; and did I mention that I spent a lot of money in the student store and vending machines on candy, sodas, chips, and cookies. And no, I was not drinking water.  Still, I did team sports and was active in other extracurricular activities, and never felt unhealthy.

My SCD started to be a significant problem for me in my 20s. I managed things before affordable health care by just cutting out booze. From that change, things seemed fine. There were week long crisis and regular pain. Waking up in pain and spending the day in pain was so common I didn’t know any different and just thought it was normal.  At that age, in my 20s, I didn’t make much effort to keep up with a hematologist or even a regular general practitioner, and truthfully not even a dentist. Sometimes my weight was much more than other times. Again, I was not making a connection between food, health, activity level, and chronic pain.

In the early 2000s, while I was living in the Bay, along with the regular cycles of pain that I had come to figure was just normal, I started having profuse bleeding in my eyes. It was a spiral of Dr.s appts, missing work, then laser surgery not to correct my vision but to seal the ruptured blood vessels. Things were chaotic and I was fortunate to have been at my job for some time so they were understanding. But in the latter part of the year, my retina detached.

Then in the late 2010s, I got on a plane to fly home for a visit. By the end of the flight, my eyes felt like they were going to explode. The whites were completely bloodshot. I went from the airport to the ER. That began my journey of specialists, realizing a need for having a hematologist, needing to properly monitor pain medications, steroids, and vitamin supplements. The medication increased my appetite which packed on weight and psych side effects. There was little to no regular proper work. Everything seemed like a giant garbage fire. At points, my vision was so blurry it was like someone had put globs of petroleum jelly all over a car windshield. When that cleared up then it was like looking into the mirror to see a steamy reflection where I could only make out color and shapes. At times there were just blotches of either kind of vision blocking. I was still trying to make myself feel better about not having my own home anymore, about having had to give up my independence, about not having a proper income, about not being able to live as an adult as I had. I used foods like lots of candies, lots of drive-thru popcorn style fried shrimp, fried tacos, french fries, lots of sodas. Throughout all of this I wasn’t the best patient to some incredible specialists and I wasn’t owning my health.

I was eating to get that “fat, sugar, salt” fix by drive-thru, dine-in with friends at cheap restaurants, or processed heat-and-serve “foods” purchased from the grocery store. All the while the inflammation in my eyes moved from the front, then it moved to the middle, finally to the back, and into the optic nerve. The interocular pressure skyrocketed and my retina specialist after closely monitoring my eye health —while I was struggling to follow directions with the medications because of the side effects— told me that I was going to need to be put on a rheumatoid biologic permanently to control the inflammation.

I visited the specialist who would examine me to “fit” me for the right medication. I was so terrified that I urgently went to my hematologist. By the way, it was a new hematologist as the last one retired. My new hematologist was pretty progressive and open to medically supported alternatives/integrative medicine to manage my SCD. After a conversation about gut health and chronic inflammation and —anti-inflammatory foods—, she referred me to an MD who managed chronic illnesses with diet in tandem with traditional western medicine applications.

Because I had to wait a four weeks to find out if this referral would go through, I went home, and out of desperation, I asked the internet about anti-inflammatory foods and chronic illness. I fell down a rabbit hole for what started as two days or so. Some information named foods in my diet as foods that supported chronic inflammation. Things like: yellow corn, peanuts, wheat, lettuce, tomatoes, and white potatoes were named on some sources as foods that caused inflammation while on others they were named as anti-inflammatory. To further confuse matters, the new information sources were also telling me to stay away from black beans, or all beans, or quinoa, or just white rice. In my research, I cross-referenced sources that ranged from holistic to hippy to Ivy League peer-reviewed articles about connections between each and all of these things: gut health, brain health, food/diet, systemic inflammation, chronic inflammation, and the relationships of all these things.

While I was waiting to get an okay from the insurance company, I did a trial of eliminating drive-thru foods and soda. I had avoided added sugar successfully for two years in the past but dang, at the time there were about 63 names for sugar. Reading every package and trying to memorize all the names and variations of added sugars was really stressful. So this time, I ticked up my veggies and learned to cook more of them than broccoli and green beans. I got off candy bars and gummy candies and ate all the fruit my heart could handle. I was eating the rainbow of food colors. In that first month, while waiting for the insurance company to say it was okay for me to see this new doctor, I started dropping weight. I started literally seeing better as the inflammation in my eyes and systemic inflammation was quieting down. I wasn’t waking up in pain and going to sleep in pain, my mood improved, and in that same month. Really, I noticed not waking up in pain somewhere in the second week. It made me cry.

There was a series of three visits in one month scheduled with the retina specialist. My eye pressure dropped in the first week from moving away from all the “delicious” processed foods. My retina specialist told me that there was a reduction in inflammation. He closely reviewed the images that showed this change. The pressure had dropped significantly to a safer number but still it needed to come down more and I would need to return the following week.

I was allowed to reduce the number of prescribed eye drops. In that next week, I dropped more weight and my vision still improved. On that second visit, the specialist told me that things were really improving and we looked at the images together. I told him what I was doing with diet change and while skeptical because so many people yo-yo on their food change, he congratulated me on my progress so far. Because the pressure was lower but still higher than it needed to be, I needed to return this time in two weeks.

In the month, I dropped four clothing sizes in the 30 days. When I returned for the last visit of this close monitoring, one eye was still mildly inflamed but the other he said was textbook healthy. He said I would still need to have regular checkups, but the next time was to be a month out. I was allowed to come off my medication if I could stay with this new way of eating. During that same week, the insurance company finally notified me that it declined the referral for me to see the doctor who managed chronic illness with diet. So, my hematologist referred me to a nutritionist. It took another three weeks or so to get in with the nutritionist at the medical center. By the time I did, I had adjusted to a set rotation of veg and fruit. I figured out which things like peanuts or yellow corn or too many tomatoes were indeed inflammation triggers for me.

The big takeaway was the realization of how we’re told not to eat certain foods or that they are bad for us;  so rarely are we easily given the information on which foods we should eat and why those foods are potentially beneficial. Think of it like “using” food as a fuel, or to protect our health, or just fill up, or sometimes we very simply need not to go hungry. Having good information is beneficial so that we can make informed choices for ourselves rather than waiting for a doctor or advertisement to explain (and sell us something) while we are experiencing a physical or emotional crisis. Taking ownership and managing our own health is the real power move.

The collaboration between my retina specialist, hematologist, and finally me participating in my own health worked out. Eating more vegetables and fruit is not a cure, I still have and want to participate and own my health.  I still go to multiple doctors.  I still make my check-up appts, and I work with them to have them take care of my health. And yes, I still on occasion have healthier version of sweets or chips, but not anywhere at all like I did before all of this.

A real complication to consider is that each of us is working with a number of real restrictions: food storage, cooking knowledge, preparation knowledge, access, money, or time. We all have a variety of genetic cards we have been dealt or acquired: hypertension, thyroid issues, heart conditions, diabetes, asthma, arthritis, sickle cell, lupus, MS, predisposition for addiction or depression the list goes on. I don’t take any of this for granted. The change to my health is not permanent, health is not static. I will have to manage my health for life. And I want to do just that for as long as I can.

What I did is accessible for everyone who can choose their food, it may take more planning at the start as with anything new to us. I write that with respect to the wide differences in economics, time, food storage, and genetics that each of us navigates. It is also said with respect to the many different ways we “shop” for our food, no matter if the sources are: high-end organic stores, co-op’s, community garden organics, discount grocery stores, food distribution centers, pantries, left-overs from work, veggie vans, home-garden swaps with neighbors, liquor stores, or produce box deliveries. I am sharing my story because now, I love to learn about and talk about using food to support and protect health, like I will gladly talk with you all day on this topic. I also want to just say to people who might want to change the foods that they eat but maybe feel discouraged, or that it is too expensive, or that they do’t have time— check in with your doctor and then just start and try and keep going. There is a lot of information online to support your journey and about how to make fresh foods taste great and many different ways to have a plant-based or vegan or meat incorporating diet that involves eating the rainbow or foods.

This is such a broad topic ranging from why to eat more fresh veg & fruit to how to shop for them to how to make them taste great together to batch cooking to seasonal foods. Here are just a couple of  links worth checking out to learn a bit more about chronic illnesses x inflammation x and diet:

A very short list of anti-inflammatory foods from Harvard Health

Johns Hopkins member hospital on chronic inflammation and food

Intersection of inflammation x  nutrition x Covid-19

Intersection of nutrition x psychology

Stanford Nutrition Studies Research

Nutrition Studies Stanford Research

Low-grade inflammation, diet, and health

Stina Peek is a writer trained in visual rhetoric and technical writing. She has been living in So. Cal and writing about how we use food (Food UX from a user’s perspective), nutrition literacy, design, and arts & culture.

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