Some of you may have noticed Kayray’s final blog post was on Thursday, September 28th.
She died in her sleep sometime in the morning of Friday the 29th of September. She seemed to be peaceful.
Please keep listening to her stories, enjoying life, reading to children, growing good food, eating less meat, and creating things for your loved ones.
If anyone would like to reach out to me, you can do so at the following email address: frigon.henry@gmail.com. Please put “Kayray” in the subject so I know it isn’t spam. I will read them all but may not answer right away.
Yay, at long last, a half-assed shower and hairwash. My old system, a bath, while less laborious than a shower has become too fatiguing. But I figured out that if I sit on my shower chair and wash my hair, the rest of me gets clean enough without expending any extra energy. Good enough and I’ll be able to manage on my own a while longer.
Ok day. Knit some, read lots. Was able to hang out in the living room this morning long enough to have some quality time with my sweetie. <3
It’s Henry’s birthday, the anniversary of the happiest day of my life! Best baby, best little guy, best teenager, best adult son anyone could ever wish for.
Whoof, it was a rough night — many false pump alarms and many trips to the loo. Too tired to do anything today but self care: stayed in bed, ate leftover black bean soup, watched stuff, daydreamed about the food I’m too tired to cook and too full to eat.
I want hot sweet Thai stirfry with rice noodles and tofu, I want scalloped potatoes, I want lemon blueberry muffins, I want peanut brittle, I want garlicky pasta, I want nachos with homemade spicy cheese sauce, I want vast quantities of steamed broccoli with butter, I want big crunchy salads, I want cottage pie, I want snickerdoodles, I want a heap of chard with butter and lemon, I want ginger cake, I want cinnamon rausin bread, I want rice with butter, I want pizza, I want lemon yogurt, I want a whole steamed cauliflower.
Well, tomorrow maybe I’ll be able to make lemon yogurt, and maybe scrape up the energy to harvest and sauté some chard. Mmm chard.
Watching a really terrible British cooking contest show on Netflix. I guarantee it’s a one-season wonder. “The Big Family Cooking Showdown” starring glum families (except for the one family who are insane rather than glum) cooking unpleasant-looking food, hosted by hosts with zero charisma and not much to say. Lol. I think one episode will be quite enough.
Tomorrow I’ll watch bake off again on Netflix so they get viewing numbers.
I couldn’t take photos last night because the light was crummy, but Dave finished building my custom shelf/organizer thingy and I set it up and I love it so much!!
Here is a Before photo, showing my cluttered tray-table with my important stuff stored in a cardboard box:
And here, oh here, are three photos of my beautiful cherry-trimmed, custom-made shelfy-thing (anyone have a better name for it? “Organizer” sounds too office-y)
He built it just for me! We measured out exactly the dimensions I wanted, and he drew it up so the bits went together perfectly, and he took such care in building it for me. I am a lucky, lucky girl *heart eyes*
Watching the new Great British Bake Off, episode one, and so happy they replaced Matt Lucas! I found him incredibly annoying. His replacement seems like a very sweet woman. The challenges have been normal so far, too. Nothing outlandish. I hope this is a sign that this season will be returning to the comfy old bake off format — no tacos, please.
Very tired so it was a stay-in-bed day, but perfectly pleasant because I felt ok to knit some and watch season 2 of Fargo. And it rained all day! Tomorrow is metolazone day so I decided that today I would drink as much liquid as I want, and enjoy a whole day of never feeling thirsty. I probably won’t breathe well while I’m sleeping tonight but what a treat it was! I drank two bottles of my homemade sparkling apple juice, one of homemade sparkling grape, and tons of delicious ice water. Ahhh to feel properly quenched for a change. Enjoy it, healthy people.
Oh I also finished winding all twelve 50g skeins of cotton yarn (for Chloe’s baby blanket) into 100gm balls, joined with the Russian Join, which is best for cottons, so that will save effort as I’m knitting.
Got up to pee a lot but then slept till 9! Very tired anyway. Stayed in bed and finished season 1 of Fargo while knitting. Season 2 now, too tired to knit but am listening to the beautiful rain. Thirsty and queasy.
Bad sleep so very tired today but Henry and Lulu came over for hours so it was a wonderful day anyway. Henry brought leftovers for my freezer, a sriracha barbecue sauce, chicken, and beans dish, very strongly flavored, sweet and spicy, so I could actually taste it. I made cilantro-lime rice which went with it very well so we ate lunch all together. My stomach is not too miserable today. I think the extra dose of diuretic helped. I only weighed 97 pounds this morning, so there’s not a drop of extra fluid in me.
Henry did tons of chores and housework while Lulu and I snuggled in bed and I helped her read the words in her new Nintendo game, Fae Farm. Super cute but lots of reading to get started. She’s got the hang of it now and can probably have fun on her own, exploring and crafting.
I am plum worn out now, hoo boy. Time to zone all the way out in front of Fargo, s01e05.
Oh! This morning for breakfast I made a lemon yogurt that’s as good as or better than my favorite lemon yogurt that Trader Joe’s discontinued! Whisk together a tablespoon of sugar and a tablespoon of fresh lemon juice, then whisk into a half-cup of thick yogurt. I used my homemade whole milk strained-kefir yogurt but storebought Greek yogurt should work fine. Add more lemon or sugar to customize, or some lemon zest if you like it. So good, so sharp and fresh-tasting!
I had a Good Day! Omg, an actual Good Day. I took metolazone first thing in the morning AND didn’t eat anything until the late afternoon so my stomach felt ok for hours. I did so many fun things! I tidied up my bedroom a bit and even put away my clean laundry. I dealt with packages and got my horrid pile cleared off the table. I pounded up dried bread into crumbs in my mortar and shredded some more stale bread to dry in a low oven for more crumbs. I assembled my mini eggplant parmesan and baked a batch of banana-walnut muffins and washed everything up and left the kitchen tidier than when I got there. And I strained a quart of kefir to make yogurt. And watered my container garden.
And then I was ALL WORN OUT, naturally, having clocked over 1000 steps, but for a good and satisfying reason so I went back to bed in the early afternoon for drawing and audiobooks and zoning out. At about 3 I baked my casserole and have been working on it very slowly while watching season 1 of Fargo. Forgot how good it was. And my casserole is delicious! I can taste it! My stomach feels full and uncomfortable now of course but it’s less annoying late in the day when I can just lie here and rot. Maybe the trick is to simply not eat for the majority of the day. Sigh. I drank some juice in the morning so I never felt lightheaded or anything. I daresay a little lemon sorbet would be ok too.
The minute I eat anything, I start feeling uncomfortable again. Gah! But still not horrible like yesterday. This morning, before eating anything, I breaded and fried some eggplant slices and tomorrow I’ll assemble them into a little eggplant parm, and then I’ll eat it and feel awful. But I just had a great Zoom appointment with wonderful Dr. Jeff Robinson, my pulmonology specialist, and we have a plan. I’ll take metolazone again tomorrow to try to get ahead of the edema, even though I just took it yesterday. And he’s going to ask his pharmacist if there’s a gentler form of potassium I can take, a liquid perhaps. We’ll try that first, and if that doesn’t help I’ll skip my potassium supplements for a few days to find out if that really is what’s making my guts feel so bad. Feels good to have a plan. He wants to do everything possible to keep me comfortable.
Also, and he was sweetly delicate about this, through he needn’thave been, he told me that Oregon is a “Death With Dignity” state! So when it all gets to be too much I can choose to go on my own terms. He says just having that medication on hand can help me feel like I still have a little bit of control as it all slips away. I’m so very happy about this! Not yet, of course! I’ve got eggplant parm and lemon-blueberry muffins to make and a LOT more videogames and drawing and Taskmaster and knitting and hanging out with my lovvies still. But someday I can make that choice for myself. I didn’t know it was legal in the US but it turns out there are eight states that allow this humane treatment. Only eight, which is shocking, but at least there are eight and I live in one of them. https://deathwithdignity.org/states/
Feeling so much better. Yesterday was horrible. But I slept well and my stomach is behaving and I think I can sit in the living room for a while instead of staying in bed all day.
The house was chilly this morning and I wore my warm slippers. Autumn is coming!
Played some Zelda and got the Autobuild ability yay!
Made easy Thai sweet chili sauce this morning so that my broken taste buds can perceive some flavor in my stir fries, and very tangy potato-sauerkraut soup for dinner. It’s Soup Season.
Still alive! Stayed in bed mostly. Did a little drawing in procreate but got worn out really fast. More tomorrow. That leftover homemade pad Thai was such a treat.
Mood better tonight because different strategy today. Instead of getting up, doing stuff, getting exhausted, and going back to bed at noon all sad, I got up, made my breakfast smoothie, and went back to bed to read. I conserved my energy until my grocery delivery got here in the afternoon and THEN I used my One Daily Spoon to make myself a nice meal. Tofu Pad Thai For One! Rice noodles, tofu, broccoli, red bell pepper, an egg, bean sprouts, peanuts, sauce, lime juice, cilantro. Not quite like restaurant pad Thai but also WAY LESS SALTY and still quite tasty! Kind of a pain in the butt, with making the sauce and having all the ingredients prepped and ready to go before you start cooking, but I’ll be more streamlined next time. I can scramble the egg in the pan, for example, instead of whisking in a little bowl. Also the “For One” recipies from http://onedishkitchen.com make two Kara Servings, so tomorrow’s lunch is already taken care of. I cut the sugar in the sauce by 2/3 so I’ll add a bit more to my leftovers and see how that is.
I ordered like six different kinds of crackers in my grocery delivery. Lol. Cheese and crackers is my new Appetizing Thing, apparently.
My body is still so heavy, and walking is a huge effort… walking around less means I notice less, though I know that is the worst possible thing for me to do. I need to walk more or it will only get harder. Maybe my darn PT people will get back to me next week and give me even gentler exercises.
Ugh. I wake up feeling pretty ok but my body is so heavy. Every step feels like slogging through deep snow carrying a toddler. Went back to bed before noon. Listened to audiobooks all day. Feeling full, took metolazone at noon.
A better day, thank goodness. Sort of average+. Slept well! Did some cooking, read my book, watched the Barbie movie and utterly loved it. Sharp and funny and curiously deep. Amazing set design and costuming.
(But isn’t Ryan Gosling a little old to play Ken? Isn’t that, like, one of the things we’re fighting against — older actors being paired with younger actresses? But that’s literally my only complaint.)
I ate barely anything yesterday but today I did better. Realized if I skip breakfast that leads to zero appetite later, oddly enough. So I made a small smoothie this morning and then was able to eat two kiwi fruits and a big bowl of popcorn while watching the movie, a small bowl of homemade chickpea/tomato/cauliflower curry over rice for dinner, and I have my sliced crunchy green apple and goat cheese for a bedtime snack.
Still alive etc. Not a great day. Not a terrible day. So weary. Finished two excellent books — “Book Lovers” and “The Family Next Door”.
Mom did laundry, made my bed, did endless dishes (where do all the dirty dishes come from? I use my disposable paper bowls almost exclusively), and played Bartok on the piano for hours. Bach is a bit too much for my brain lately. Bartok is so much simpler.
