I have been struggling so much lately to find any identifiable rhythm that brings some order to my days. It’s not the first time I’ve been through a season like this, but it is the first time that it is ME and my energy level that are standing in the way of finding some order. That really complicates things.

It’s been almost a year since I was diagnosed, but it took a solid six months before a sort of useful treatment regiment could be found with medications and diet, so it’s only been a few months under my belt with this disease and sort of ‘normal’ life. As so many of my friends with Chronic Illness tell me, it’s best not to get too comfortable with any sense of normalcy or ‘yay, the treatment is working!’ because invariably things will shift right back to square one at the most inopportune times. I do know, watching my friends’ experiences, that there is a point in time, a few years into it all, that you get more comfortable with what your disease requires and it doesn’t take up ALL of your brain space…but I’m not there yet.

I don’t think I’ve even quite gotten a solid grasp on how many spoons I actually have to even know how many I can spend on a given day. (Here’s an explanation of Spoons if you’ve never heard of it.) When I will have no spoons tends to happen at random, though some things are becoming clearer: a sudden weather shift, a loud sound incursion. But other days, there’s really no explanation as to why I feel so awful- and the way it can shift in minutes- it honestly causes no small amount of anxiety. I have become very wary of being out and about without my husband or my older teens with me. Nine times out of ten I am just fine, but that tenth is such a doozy. It’s terrifying to experience especially when strangers or acquaintances (or even unexperienced family members) have to help me, mostly because I am too in the thick of my disease to be able to explain my needs or how I need assistance.

So, my first order of business these last few months is just to listen to my body. My goodness, I think any woman (and especially a mother!) struggles with actually listening to our body. There are just so many demands upon it, and we tend to keep pushing through, even though we shouldn’t, because- if we don’t, who will? Right? But I am trying. Really learning to listen to that slightly tired, blah feeling and stopping right there. Because if I keep going, blow past that- I pay for it so dearly.

I am finding that my bedtime routine is probably the most necessary for me at the moment. I am getting almost militant about no blue screens past eight for myself. There’s a whole little litany of things I do as I shut down…Prayer. Lotion. Serenity EO in the diffuser. On my temples, behind my ears. Heat packs on my head and neck. Sound canceling head phones playing either the monk’s complines, or chant, or exceedingly quiet slow music for the length of time that the packs stay warm. Without it, my mind continues to whirl and my hearing just buzzes, making it impossible to sleep. My body has definitely made it known that I need that hard, quiet stop as a marker.

Cleaning and caring for my home has been quite a challenge. For a month or so, we had someone come in and clean the main areas of our home. It wasn’t something we could afford over an extended period of time, but for the time we did, it was very helpful and allowed me to rest and reboot and consider what I could actually accomplish when the period was over. The deep deep clean they did on their first visit helped too. We have divided a large amount of the work among the children now, which none of them particularly like, and none of whom actually do a particularly good job at it- work in progress, folks– but with the redistribution and occasional help from friends, we seem to have found a fairly decent system again. I am re-learning the best way for me to accomplish getting the mountains of laundry done, and it slowly, slowly, feels like it’s returning to a workable normal.

Just don’t glance at our faded paint, broken windows, abused garage doors, or our yard or garden, m’kay? It’s a bit, erm. Wild. My beloved wildflowers are more weeds than flowers, vines growing through the bushes, pokeweed in the rhododendron, and more poison ivy than you can shake a stick at. It’ll happen in its own sweet time, but man. It’s discouraging. The kids are pretty hard on anything and everything we use and the exterior is really, really starting to show it. Flowers are one of those things that just fills me with unmitigated delight. I love growing them, I love picking them, I love arranging them. Losing a lot of that to this stupid disease is kinda painful. I hope as I grasp how many spoons I have, returning to the garden might get a spoon.

Feeding a family of eight with such a weird unpredictability to my energy levels has got to be one of my biggest challenges, bar none. A friend sat down and helped me reboot my meal planning and grocery procuring systems -which I used to be quite ace at but somehow in this year of everything, my brain decided was non-essential information and just sort of dumped into the ether, buried in brain fog. It’s still a bit hit or miss. This week, for example, has gone relatively well. Groceries procured on time, meals made and ready at a reasonable hour. Last week, it was catch as catch can, all over the place, and we had to default to old standbys that no one even likes anymore because we’ve had them so.many.times. Neither my husband nor I really like to cook. We don’t really like food, either. It’s just not a thing either of us are gifted at and it makes it so hard. It gets even harder when you have one with specific diet needs- Celiacs. And three with limited palates. And then me, who often feels more nauseated than not any more. Making something that fits all those demands when you feel like crap…it’s hard. It’s definitely the area that I am most working on right now.

Which leaves the sort of home projects, things needing done. I used to schedule these into my normal cleaning routine, but that just doesn’t work anymore. I do keep a running list of things I feel like I can accomplish, and when a rare synchronicity happens, I’ll pull a job that matches my energy level and needs off the list and get it done. It’s definitely a much, much, slower process, but there is still some movement. The harder part is the stuff I can’t really do on my own anymore, which seems to be multiplying at an exponential rate. It’s a puzzle to be sure on a tight budget, but hopefully I’ll figure something out. Perhaps some local teens looking for side jobs…there’s got to be some options.

Having written all this out, I’m actually feeling a bit heartened. It has been very chaotic and difficult, and will probably remain so, but I can also see how we’ve already begun to adapt. It will come with time.

Our garden has produced a decent amount this summer, which is a vast improvement over the last few years, when results have been anemic at best or non-existent at worst. We planted lettuces, cauliflower, peppers, spaghetti and butternut squash, and salad tomatoes. If our squash can manage to fight off the powdery mildew that has afflicted them after the endless rain and damp this summer, it will be quite a boon to me! I love both kinds but they are rather pricey at the grocery store. I have been so grateful to pull cucumbers off the vine for our lunches nearly every day…the tomatoes are almost ready. How yummy it will be for my little (and big!) snackers!

I appreciate dearly the help to my grocery budget the garden has provided. I love knowing, too, that no dangerous herbicides and chemicals have been near them, as sensitive as Elliana is to those sorts of things.

I am praying that as my grocery budget stabilizes thanks to Trim Healthy Mama, I will be able to put a bit by for harvests of a different sort. I’d like to be able to solidly replenish my pantry, which has been rather down to the dregs over the summer…well…for quite a while now. We have a really nice Mennonite bulk foods store a short drive from here (their prices seriously can’t be beat by even Amazon or the national whole foods co-ops like Azure) that carries the things we use so much of in proper bulk sizes. My plan is to get at least 50-75lbs of oatmeal, which we go through like water. 25lbs of gluten free flour. Sugar. Syrup, at least 4-5 gallons. Kidney beans. Great Northern Beans. Pintos. Rice. Oh my goodness. I can’t decide if we go through more rice or more oatmeal, I swear. (Large family problems!) With that, I could shop my pantry nearly the whole winter, and my grocery budget would go down even further. It will be lovely!

What are your ‘harvest’ plans, friends? Do you know how to can? I’d love to learn, but there just hasn’t been any time for it until now. How is your garden doing? Do you have a garden?

RB: I always talk about options and substitutions. I’m trying to pass around the word quanto basta, which is basically this principle from Pellegrino Artusi in L’Arte di Mangiar Bene, a book that has been in print for 170 years in Italy. He uses in many of his recipes, as I have as well throughout Autentico, q.b. – quanto basta – meaning “as much as is enough,” “as much as is needed,” or “as much as you like”.

– The Splendid Table, July 26, 2018

***

I was listening to the most recent Splendid Table episode on my way home from Paraklesis last night. It’s not something I would have really ‘sought out’ to listen to, but I find myself listening to it most Wednesdays as I drive home from Church. We don’t have a classical station anymore and most of the radio stations around here leave a lot to be desired. I’ve slowly become a fan. It also makes me ridiculously hungry for dinner, as I usually haven’t eaten when I’m listening! Ha.

This particular section of the episode fascinated me, as I had never heard of cold rice salads. But it was Rolando’s note on “quanto basta” that really got me thinking.

One of the interesting side effects of our forced gluten free lifestyle is that we truly know what food tastes like now. It would surprise you how bland your palate becomes if you’ve mostly been accustomed to the standard American diet. Even if only a third or a fourth of your overall diet is processed, the general thrust of what you eat is just so bland and has so many fillers in it, all robbing the food of its real taste.

We were fascinated by this as we began to cook mostly from scratch. Things suddenly had taste! And lots of it. Take spaghetti sauce out of the jar. We have to be careful because gluten fillers are often used as a thickening agent (sign #1 that you’ve taken too much out if you need help to thicken it!)- gluten is just literally everywhere in things you’d never imagine. Like toothpaste. And lotion. And cheap chocolate chips.  Spaghetti sauce out of the jar is ‘good’. It works in a pinch. And I still use it sometimes. But, if like us, you have to make it from scratch until you find a ‘safe’ jarred version, it will blow your mind. It’s beautiful little explosions on the tongue. The garlic! The oregano! It just pops.

Anyways, quanto basta was so interesting to me because I actually knew what he was talking about, for once. It is a very real thing, and even more interesting, it is completely different for each cook. I used to watch my good friend, an eminent foodie, cooking. He would season and taste, season and taste, and he would mutter not enough. Taste. Heat. Stir. Season. Stir some more. Taste. Mutter. And then all of the sudden, boom. He would call it enough and move the dish along to its final stages. It was utterly mystifying to me! I was truly stymied watching him, because, how the heck do you write a recipe from that? I tasted the same stuff as he did and I could never tell the difference. I’d make it exactly how he did, and follow his instructions, and it would never come out right.

Understanding quanto basta has nothing to do with cooking or even recipes- it has so much more to do with your palate, your sense of taste and smell. You have to develop the palate before quanto basta ‘clicks’. You’ll know by the taste and smell of things if it’s where you want it to go, or if it has farther to go. You’ll also quickly know if you’ve over-seasoned or pushed it too far. You can smell it before you even taste it.

Again, though, it’s taken four years of me cooking this way (and learning basic cooking skills like saute-ing) for my palate to get to the point that I can do this from muscle memory…and a bajillion mistakes along the way. In cooking, you learn so much more from the mistakes than when you actually get it right. It takes patience. I never, ever, wanted to be a cook. I’m not a foodie. Cooking dinner for my family will always be a sacrifice for me because it is just not something I like to do. All that said- it has been so worth it to truly learn the cooking arts. It makes the sacrifice easier, I guess you could say. It reduces the time I have to spend in the kitchen. It has reduced the guesswork and the flops and mistakes that used to put me in tears because dinner was late and everyone was growling and tired. It has reduced the visits from the pizza guy. It also makes it so much easier to create something from nothing when the pantry and refrigerator get sketchy.

I just love the idea of “as much as is needed”. I am seeing so many connections, not just in cooking, but life in general. The only way you’ll know quanto basta in your cooking- and in life? Pay attention. Stay in the moment. Taste and see.

Feeding my large family is always well, interesting, but it got so much more…erm…challenging after Elliana’s Celiacs diagnosis. Oh my word, that first grocery bill afterwards! I still shudder when I think about it. I realized very quickly what a friend of mine meant went she said “we eat beyond gluten free”, echoing Joel Salatin’s “beyond organic” quip. If you buy the gluten free counterparts to your normal processed food (like macaroni and cheese), you will pay double and triple what it usually costs, and don’t even get me started on gluten free “bread” that runs $6-8 dollars a loaf and tastes like, well, cardboard. Over half of the things we bought her that first month she never ate because it tasted so bad.

Then we tried to have two separate cooking areas and cooking her meals separately from ours. This never worked properly. Up until recently, she was extremely sensitive to cross-contamination. For her, cross-contamination meant at least twenty four hours of severe gastrointestinal upset and high fever for three or four days. It was not. fun. For her or for us. It also felt doubly expensive to me, and much of her food would sit in the refrigerator until it was eventually thrown away because she was only one small kiddo with a near toddler sized stomach and never could fully eat even the single sort of portions we’d make for her.

The only option left, as my friend gently and teasingly tried to tell me, was for us all to eat gluten free from scratch. We figured that out about oh, month two.

It’s taken me FOUR years to finally get a handle on it. Our grocery budget has been all over the place over the intervening years. I’ve tried all sorts of gluten-free and vegan cookbooks (vegan/vegetarian cookbooks are often easy to make gluten free). It’s been a mess. What’s also been a struggle for us, too? The unpredictability of our schedule. I always meal plan and shop for the week (our finances would never survive without it), but there have been times that a whole week’s worth of food rots in the refrigerator because someone has been admitted or something else unexpected and without James or I available, the meals planned can’t be made. It was always one thing when we knew that something was coming up- there would always be caregiver friendly meals on the plan- frozen, crockpot, simple type things. I swear, though, that seemed to happen only one time out of five. It has been a formidable thorn-in-my-side for years now.

On one such occasion sometime in January of this year…an ER visit, if I’m not mistaken…a nurse heard me bemoaning this very aspect. I can’t remember if I was on the phone with someone or if I was speaking to my husband as she came in or out but the bottom line is, she said that she overheard me talking about the whole gluten free, kids, meal-planning thing, and “had I ever heard of Trim Healthy Mama?” She said, their “plan” aside, the cookbooks were chock full of kid friendly gluten free (or almost gluten free) recipes “and a lot of them can be frozen ahead of time”.

Y’all, I wish I had her name. I could literally kiss her and name my first grandkid after her. It has been a tremendous life saver, and we are finally on track in both meal prep and planning and our grocery budget. Actual predictability? Sanity? What is this rare bird of which you speak? <weak grin>

We have yet to hit a THM recipe that my kids have hated. Do you have any idea how impossible this is? Do you know how many ‘gluten free’ meals I’ve made from recipes over the years have sat poked at and barely eaten and some we’ve just given up and thrown away because none of us could stomach them? It’s like angels are singing somewhere, seriously. We also choose to eat vegetarian due to religious reasons during parts of the year, and it was, quite literally, something that would leave me in tears trying to deal with and plan for. For something that was supposed to reduce distractions, it was a profound distraction. Not anymore. Glory!

Obviously, we started using the THM recipes just for survivals sake, not worrying what it was (E, S, FP, or XO)- I didn’t even look at that! We just wanted good food that didn’t cost an arm and a leg and was relatively easy to make. I have ever so slowly been transitioning my family “on plan” since about half of us have some weight issues we need to deal with, and I’ve found it very doable. That being said, I noticed right out of the gate using those recipes just for dinner that it started making a change in my kiddos. They were fuller, happier, and calmer, and some health issues started to shift. And that was one meal a day. It will be interesting to check in again in another six months to see what we think with us eating on plan. The best part, though, is Elliana. She loves the food- she eats seconds and thirds and fourths sometimes, a miracle I never thought I’d see. She gets ‘bread’ that she likes. (We like it too.) My child is eating! Can I put it in all caps? MY CHILD IS EATING.

Most of the meals can be made and frozen ahead of time. We take an afternoon one Saturday a month and have at it. No more grabbing food on the go, no more caregivers being caught in a lurch, it’s already there, easy to pull out when it gets all harum-scarum. Cue angels singing again.

Our favorite book, of course, is the Trim Healthy Table that came out just over the last year. It is especially geared to families. The Trim Healthy Mama Cookbook is good too (and it has some single-serving recipes that might be helpful if it’s just one person), but it doesn’t seem to have as many kid-flavor friendly recipes, so if you’re debating with kids in mind, go with Trim Healthy Table first. I recently checked out the actual Trim Healthy Mama Plan book from the library, and I’m learning tons. My favorite online sources for help? Breezy Brookshire’s mom, MamaShire, and Briana Thomas. I have a crazy artist crush on Breezy, but that’s a story for another day. If you have diet/allergy meal issues, I can’t recommend these cookbooks enough. They’ve already done all of the hard work for you, and it’s one less thing you have to puzzle over. Whether or not you ever use ‘the plan’ itself, they are worth every penny.