More Than a Meal: Cooking Curry for the Sarcoidosis Soul

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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Yesterday, I made vegetable curry for dinner, and it was a big deal. Well, it was for me.

I’ve never been much of a cook. When I was 15, I “wooed” my husband by burning a frozen pizza, so he knew what he was getting into when he chose to marry me.

Two years ago, though, he bought me an Instant Pot for “Chrisnukkah” (we celebrate both Christmas and Hanukkah). It seemed an odd gift, given my lack of culinary skills, but it appealed to me because it was from the “Star Wars” collection. I’m a bit of a geek, so I was excited to have R2-D2 help me in the kitchen.

Over the next few weeks and months, I bought cookbooks, found recipes online, and even joined Instant Pot groups on Facebook. I grew to really love cooking, for a number of reasons.

For one thing, I often feel helpless, as I’ve become disabled by my sarcoidosis and other illnesses. My husband does so much to take care of me, and while I am incredibly grateful for him, I feel like it’s such an unfair burden. But cooking is one way that I can take care of him.

When I cook, I can ensure that we both have healthier meals. While there is no specific diet that can cure sarcoidosis, different foods can affect inflammation levels in the body. Increased inflammation can exacerbate sarcoidosis symptoms and lead to other health conditions. Eating better can also help offset some of the weight gain I experienced after 10 years on steroids.

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I also realized, through talking with my therapist, that cooking had become so important to me because it was the one part of my life that wasn’t about being sick and disabled. I had always kept busy with work and volunteer jobs, but when I got sick, all of that had to change. I’m still as busy as I can be, but it’s almost all illness-related.

When I was initially diagnosed with “some kind of arthritis,” I started volunteering with two arthritis organizations. When doctors said sarcoidosis, I got involved with a leading sarcoidosis foundation, and have since started a nonprofit to enable more patient-to-patient connections. Even this column is specifically about sarcoidosis life (and I’m so glad you’re here).

Beyond that, about 95% of my friends and family are from the chronic illness community. That’s partly because many of the people I used to call friends drifted away as “out of sight” became “out of mind.” But it’s also because the connection with someone who really “gets it” is so instantaneous, strong, and necessary.

While I absolutely love what I do for the chronic illness community, there are times when it feels like too much, and I just want to escape. I don’t want to think about being sick, I don’t want to talk about being sick, I don’t want to be sick. Although I can’t quite achieve that last one, cooking gets me pretty close to the rest.

When I broke my foot in July, I couldn’t stand at all for a month. In August, I was able to put my heel down, but given my dizziness, vertigo, and balance issues, I couldn’t do that for more than a few seconds. In September, I was able to put my foot down while still wearing an orthopedic boot, but it hurt too much to do that for long. Then, for nearly half of October, I was in a terrible flare, barely able to move from my couch to the kitchen, let alone actually do anything in there.

But for now, it seems the worst is over. I’m able to stand on my still-healing foot (with a carbon fiber insert in my shoe), and the dizziness usually passes a few moments after I stand up, as long as I don’t look or reach up over my head. I wouldn’t say I’m energetic, but the fatigue isn’t as bad as it was during that awful flare.

Given all of that, I was excited to get back into the kitchen.

Cooking with sarcoidosis | Sarcoidosis News | Photo of vegetable curry in an R2-D2-themed Instant Pot.

Vegetable curry in the R2-D2 Instant Pot. (Courtesy of Kerry Wong)

My curry came out perfectly. It was sweet and savory, loaded with tender vegetables, and full of flavor. My husband’s smile and return for seconds were the icing on the cake for me. Best of all, the recipe made 4-6 servings, so the next time I don’t have the energy to cook, we have healthy and delicious leftovers waiting. Though now I’m just thinking about that icing … and the cake.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

DebbraP avatar

DebbraP

Kerry, your curry soup looks delicious. It's always good to achieve something. I have found that even the smallest or mundane things help to give me a sense of normalcy -and achievement. I haven't cooked in a long time but the other week I was able to stand long enough to scramble eggs. And the other day I did a few small chores. THAT really helped to give me a sense of normalcy. That little sense of normalcy gave me a big boost.

After being homeless and then having to live with other people, I will finally be moving into my own place soon and can't wait to start cooking again. I'd like to ask, when you cook do you use a chair or barstool to sit on and rest and do you sit down at a table to chop and prep foods? I'm trying to think of ways to cook without it killing me. I am on an oxygen concentrator 24/7 so have to be careful. Holding on to spoons, knives or ladles is also a challenge. Trying to figure that out. I want to be able to do what I can for myself and have the freedom to cook what I want. But first I need to figure out how to equip my kitchen or arrange it and learn to use utensils without dropping them. Would love to have your input.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Debbra, you've been through so much - I'm so glad things are starting to look up for you! I don't have a chair or stool, but I take a lot of breaks (I mean A LOT! Once, I needed 3 breaks just to cut up a head of cauliflower!). I try to buy pre-cut veggies whenever possible, or ask my husband to help with that part. There are lots of tools that can make it easier, too: you can get some ideas from an occupational therapist who has RA here: https://arthritis.theenthusiasticlife.com/2020/06/21/kitchen-life-hacks/

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DebbraP avatar

DebbraP

Thanks, Kerry for sharing that link! I will definitely be looking at it. And hopefully...cooking soon.

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