Too Much Food in My Fridge and Other Consequences of an Acute Porphyria Attack

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by Claire Richmond |

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I stacked a cling-wrapped tray of broccoli trees on top of half a dozen brats, then shoved them to the side of the middle shelf, revealing two blocks of tofu, a slightly wilting head of cabbage, and a storage container holding segments of an onion. Returning from the grocery store, my fiancé and I filled the fridge with food purchases from our regularly scheduled Sunday haul.

As I played an intense game of grocery Tetris, I mentally recited a dirge for unmade recipes from the previous week: tofu and broccoli, deconstructed egg rolls, and grilled brats. Last week, a porphyria attack cannibalized my best meal-making intentions, along with most of my other hobbies.

I have losses due to my illness, but I’m over dwelling on them. Instead, I closed the refrigerator door and murmured sentiments of gratitude for the overflowing abundance it contained.

I had a bad attack last week. I’m currently averaging two attacks a month that last four to eight days each, coinciding with my ovulation and the start of my period. It’s like clockwork. I can manage the pain, migraines, and nausea at home as long as I’m still able to eat and drink, but it’s all-consuming.

During an attack, I’m unable to do some of my favorite things, like cooking for people I love, riding bikes with my family, meeting girlfriends for coffee, and attending events of any kind. If we have plans and I get an attack, I will cancel on you. And then turn off my phone’s notifications. I go into self-preservation mode, ignoring the time of day to sleep, staying under the covers to listen to a book, or lying on the couch to watch a show with my family. I leave home only to see my hematologist or receive treatment.

When I moved in with my fiancé and his boys, I claimed the kitchen as my domain. I embraced the role of meal planner and cook because it was something helpful I could contribute that didn’t drain my energy. I have a constantly evolving mental inventory of grocery items we have, and ingredients we need based on the upcoming week’s dinner selections. I meal plan, gathering input from my family and then writing out a menu from Monday through Sunday on the large marker board hanging by the kitchen window.

Attacks also change my appetite or steal it altogether. Eating becomes difficult due to pain, and impossible when gastroparesis develops. As delicious as cabbage, mushrooms, and pork fried with Asian flavors sounded on the Sunday I meal-planned, when the Tuesday of a porphyria attack rolled around, all I wanted was simple carbs.

I call this phase of my attacks the “cereal diet,” because a couple years ago, I was unable to eat for weeks due to a paralytic ileus, and when my digestive system kicked back into gear, all I craved for days was Cinnamon Life cereal.

Following is a list of my favorite porphyria attack foods. I could call this “porphyria meal planning,” but with two young kids, these are all readily available items we keep fully stocked in our home all the time:

  • Peanut butter (crunchy, not creamy) and jelly, toasted
  • Chips and salsa
  • Applesauce
  • Cereal

Essentially, during an attack, I revert back to the picky, narrowed eating habits of my 4-year-old self, and only slightly less messy. The comfort foods listed above contain healing properties as well. Whole grains are loaded with carbs to help my body fight the attacks.

Last month’s attack subsided five days later at the onset of my menstrual cycle, and I have steadily gained stamina since. As exhaustion gives way and my level of pain becomes more manageable, my cereal diet subsides. I know I am feeling better when I want to answer texts, and when the idea of cooking makes me excited.

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The afternoon after we brought groceries home, I stared into my jam-packed refrigerator, my head spinning with meal possibilities. Minutes later, I not only was cooking for a future dinner, but also for easy snacks to have on hand. I used two separate counter surfaces, a butcher knife, and no less than four mixing bowls at once.

Red onions pickled in a bowl on the counter, boiled eggs waited in an ice bath to be peeled, and I dumped chopped bacon bits into mayo-coated broccoli florets for a salad. As I scrubbed the onion smell from my fingers, I took a moment, allowing the sweet aroma of vinegar and sugar to waft over me.

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Note: Porphyria 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 Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

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