For audio version, tap PlayingWithMyFood below:
It’s almost impossible not to start this article with, “I used to…” So I’ll skip that and jump right in.
The first time I had swordfish, we were on vacation and the little restaurant was a rickety shack with a cockeyed roof and rickety grape arbors failing to hold their load up. It was on top of a cliff overlooking a bay of beautiful blue. (This was in the late 1970s. Water really was bluer then.)
The air blew soft in my face, because I was facing the sea. I’d teased my Dad about keeping his back straight even when he was slouching over soup. Everyone was pleased and peaceful. And I took my first bite.
I could tell, just by tasting it, that that fish had been swimming around early that morning. It didn’t taste like anything I could remember having before.
It was an amazing multisensory experience. It made me a foodie forever.
However, 4 years in the more environmentally challenging processes of Egypt followed that. The food filled a wider scale: the packaged white bread tasted like the feet of the men who kneaded the huge vat of dough the old-fashioned way with their shoes off, and the roadside falafel sandwiches on chewy baladi bread fresh from the oven behind the sweet-faced woman selling it at the roadside tasted like joy and love and home. With yogurt and tahini, please, thank you. (Not tomatoes, because hepatitis was in the water.)
Then there was the trip down to Upper Egypt on the train, almost 4 years later. By then, I was used to checking my soda for bugs and broken glass, and never bought candy with a damaged wrapper. (Well… hardly ever.) A certain appropriate skepticism had crept into my gleeful charging-in to the task of eating. I thought things through reflexively. That’s not an oxymoron.
The train went overnight from Cairo to Luxor. We woke in the morning ready for a good breakfast.
Egyptian eggs were small with shells so hard you could break something by throwing them. They had very yellow yolks as a rule, and I remember them as being delicious. I asked for a 3-egg omelet (which we used to spell omelette) with grated cheese. (“What kind of cheese do you have?” Shrug, “Just cheese.”)
I got all that, and a little bit more: a little cockroach cooked right in, a browny-black plaque on the surface facing me. The waiter put the plate down with one quick glance and no actual hesitation.
What good would screaming do? Honestly. I had 2 brothers and I had learned to save screaming for genuine emergencies.
I poked around while I thought this over. The egg had clearly, by its texture and color, been subjected to a good amount of heat; that roach was fried to a crisp, and I know that because I used my otherwise useless knife to check.
I mulled the level of certainty I could possibly have that another plate of eggs wouldn’t have a roach in it, only next time, concealed and not as close to the heat. Nope, anything could be in the next one, at this rate: tails, fewmets, broken glass… I mean, that waiter showed no shame. Not a good sign.
I poked around the omelette to see if there were any other surprises, other than a few scallions. Nope.
Decision: made. Elapsed time: two breaths.
I cut around the cockroach, moved it to the edge of my plate, turned my plate so the other side faced me, and dug right in.
It was good and I was fine.
I think I won the family award for aplomb that year. That was cool.
2026, with the G.I. doctor
I had a nice, relaxing meltdown with my g.i. specialist 2 days ago. My weight is almost as high as it’s ever been — not that I mind attracting small objects into my orbit or knocking over unstable furniture; that’s kind of fun.
As I told her, it’s the side effects. My right knee has developed new spasms and my low back doesn’t bear thinking about. I told her, “With CRPS we get bone pain, and the bones in my legs I’m going to cry about if I talk about them.” The added bust size is a disaster, and my postural muscles are fighting it out between stabilizing my hips and holding up my trunk; there isn’t enough to do both.
Multiple food sensitivities (try crossing FODMAP foods with gastroparesis diet with cardiac diet with mast cell/low-histamine diet, and see what’s left), a few outright allergies including gluten (which is rare), and gastroparesis complicating things have given me lots to learn about. I ranted about it, but I was really doing a sanity-check:
- People with CRPS and fibromyalgia don’t get much muscle-wasting when we’re bedbound, unlike healthy people who get bedbound. What we do get is very few red muscle cells (the oxygen-dependent endurance muscle cells), and lots & lots of white muscle cells, depending on anaerobic respiration. (This has to do with how our circulatory nerves mess up circulation and the oxygen-driven muscle cells just go away and get replaced by anaerobic muscle.) This explains why I have not been able to get anywhere with cardio exercise at this point. Beating my head against a brick wall.
- GLP-1s: contraindicated in med-reactive gastroparesis. I need my guts to move.
- Metformin: attractive for its mast-cell stabilizing effects, but then it would be “bye bye, remaining red muscle cells”, because Metformin blocks their benefit from exercise.
- The surgeries available for dealing with any of this are contraindicated because of CRPS, with its vascular and neurological complications.
It was a relief just to be heard.
And another thing: The CRPS Primer
I stumbled on this 10 dayd ago and I want to buy the maker dinner. I wanted to do this for 20 years and just haven’t been able to. This person has a kind of neurotwitchy that makes it possible to complete such a complex and challenging task, despite having this wretched condition.
The CRPS Primer is available from crpscontender.com. Buy them a coffee if you can afford it.
I plonked the whole thing into Word so I could highlight and annotate it for my own purposes. Highly recommend this as a learning tool. It’s good to think and add and argue with the writer at times, even when they turn out to be right. The references are extensive, though the gutting of the US Federal science library has affected some of the links. Check the Internet Archive’s Wayback Machine if you need to.
I won’t share that, or any other derivations, without clearing it with CRPScontender first, and that’s likely to take time. Nevertheless, they are serious about keeping it freely available to everyone at all times, so go get your own copy and play with it. It’s brilliant.