The Battle with My Belly Never Ends

The Battle with My Belly Never Ends

Once upon a time, I was an adventurous eater. I looked forward to visiting new restaurants and trying their signature dishes. Along with a great meal, a glass of red wine was a must.

Lupus changed all that.

I was a surf-and-turf kind of girl. I loved lobster, and I would eat red meat at fine-dining establishments. The food would melt in my mouth, making my taste buds and my tummy very happy. I loved a little spice as well.

When lupus came along, it brought all kinds of digestive issues. My body started rejecting meat. Many think I became a vegetarian because I wanted a lifestyle change. No, my energy levels prevented me from standing long enough to cook. I ate raw veggies because they were easy and always ready. As I regained some of my energy, I started using my slow cooker.

I’m not one to brag, but I am a great cook. A friend who owns a restaurant asked me to create recipes for him. Other friends urged me to write a cookbook. So when the meals I prepared tasted like sawdust, I was confused. I thought that after months of lying on my sofa, maybe I’d lost my touch.

I decided to visit a restaurant across the street from my apartment. Because it is close, I have been there many times. I ordered my favorite dish. Sawdust. Not only did the food not taste good, it also caused me a great deal of pain.

A visit to the gastroenterologist that involved the swallowing of some icky fluid revealed a problem. The opening from my esophagus to my stomach had narrowed. When most people eat, their food falls right into their tummy. Mine stops, sits for a couple seconds, and then falls in. Some days, this isn’t a bother. Other days, I am full and uncomfortably bloated after a small meal. The vegetarian way of life just seemed to be nicer to me.

When I started experiencing issues with pasta, bread, and eggs, it was the eggs that hurt my feelings the most. It’s not that I love them that much. But you can cook an egg in mere minutes, which makes for a quick meal if you lack a ton of energy. And I love pasta! However, it fell out of love with me. It didn’t matter if the pasta was traditional, gluten-free, or made with quinoa. I transitioned to a total plant-based lifestyle.

I find that some days I can eat certain fruits and veggies, and the next day those same foods cause me pain. It is not uncommon for me to regurgitate after eating. When I was younger, I would hear older people say that they didn’t eat after a certain hour, or that they avoided spicy foods. I am now in that group.

I have written in past columns that with lupus, you don’t go through the stages of grief only once. They are your constant companions. I am angry. When I go out to eat with friends, I have a salad or a fruit bowl. I never have bread or grains. And the last time I poured a glass of wine was two months ago. I only drink socially, and I spend a lot of time alone. Wine is rare.

There have been so many lifestyle changes because of lupus. Trying to positively place my anger and resentment is a challenge. How do you deal with the lifestyle changes you’ve had to endure?

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Note: Lupus News Today 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 Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.
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Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.

7 comments

  1. CARIDAD Vera MENDOZA says:

    Reading your post felt like I was the one who wrote it. The only difference is that I seem to tolerated better carbs like rice, past, bread, fruits at out of my list I get very sick, only bananas are OK. But like you said you eat the same thing the day before and the next time you eat it get sick. I don’t think is any food in specific is the way the digestive system works or not. I have Gastroparesis and food sits in my stomach for hours for example yesterday I took a pain pill at 2 pm and didn’t feel relief until 5 pm, if I was in the hospital I would request IV but then you know what they think. I love reading your post and identify with many of the issues you confront.

    • Kellie McRae says:

      Thank you for sharing your struggles, its good to know we are never alone. I would be lost without bananas for sure, I eat them more than any other fruit. It really is a struggle when you once upon a time really enjoyed food and now its a necessary evil in order to survive. I hope you find some relief and something you can truly enjoy. I am scheduling time with a GI because I agree with you, I think there’s more to this than food. Thanks for commenting, I hope you will do it more often.

  2. lucinda parmenter says:

    First time reading/seeing this newsletter. I have Hashi’s and reoccurring EBV and my NP thinks maybe Lupus and/or RA. I love food and struggle being really “pure”. Where do I find your recipes? Thanks!

    • Kellie McRae says:

      Hi Lucinda, I find them in a multitude of places to be honest. I look for vegan youtubers that share and sometimes on pinterest. I try to find the recipes that are the simple to make because sometimes energy does not permit for complex preparations. One of my favorite to watch is Avant Gard Vegan, I made his veggie lasagna, was able to just sit at the table to prepare the veggies and it was delicious. I hope this helps, let me know if you find some great recipes.

  3. Leslie Chambers says:

    I also have many GI Problems as a result of lupus. My lower esophagus is paralyzed so food moved very slowly into my stomach. It doesn’t matter if it is soup or a steak, a large part of it is going to come back up. It is so embarrassing to go to parties, events or event out to eat. I’ve had scope after scope and the only thing that gets recommended to me is the FODMOP diet. My stomach got so large one time that my co-workers thought I was pregnant! I hate all of it.

    • Kellie McRae says:

      Hi Leslie, I’d never heard of the FODMOP diet but when I saw your comment, I went looking to learn more. Looked up a few cookbooks too. I was doing a food delivery service that I stopped last week. Perhaps, I will check this out and see if it helps me. Is it helping you? I’m sorry you’re having a tough time at events. I have come to realize, I have no issues with fruits and veggies so when I go out, I tend to order salads. It makes me angry, all these people around me with delicious looking and smelling meals and I’m having a salad so I don’t lose my meal in public. Been there too many times too. Thanks for sharing, I hope that FODMOP diet is helping.

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