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Nurse Sarah from the CVS specialty pharmacy came over to train me in the use of my new Remodulin pump system (Remunity). Very intelligent, very kind. Too tired to really go into it but long story short I had already trained myself almost completely so I just filled a dummy cartridge once and then did the real thing once and I’m all set. The rest of the two hours was going over my medical history and meds and vitals and stuff.

I hope the new system will work well. But I have Doubts. Before I even started using it, the remotes alarmed in the middle of the night for no reason. And then they alarmed this afternoon for no reason. So. We shall see. I don’t have a choice, since my old CADD-MS3 pumps are no longer being manufactured and will soon be defunct. But it sure would be nice to not be woken up in the night.

Steamed an entire cauliflower for dinner, which I’m eating with a lump of goat cheese for protein and calories.

Had a good sleep and a long lie in and felt pretty good, so I baked buttermilk corn muffins for breakfast using the beautiful red Kitchenaid mixer we treated ourselves to for Christmas. But then after a couple hours I got super nauseated and exhausted and just went back to bed and napped for the rest of the day.

Listened to the Something Was Wrong podcast all freakin’ day. Finished season 3 (Patty the gaslighter) and most of season 4 (survivors of Jonestown). I remember when Jonestown was all over the news in 1978. The grownups would hustle us out of the room when that news came on but I wasn’t stupid.

Another good day, despite not the best sleep. Lots of pain. But as I say, it was a good day anyway! I ate three good meals again: breakfast was a blintz, lunch was leek and potato soup (plenty of leftovers for tomorrow), and for dinner I heated up some refried beans with chunks of cheese mixed in.

Mostly did needlework and watched the rain and listened to season 2 and 3 of the Something Was Wrong podcast. Here are some photos:

And I just did my stupid boring little exercises for the second day in a row. Might skip tomorrow. My muscles feel tired. You have no idea how tiny and gentle these exercises are. Like, sticking my leg out and then flexing my ankle ten times.

Another good day! Got enough sleep (well, I say “enough” but there’s really no such thing. I got adequate, non-sweaty sleep), ate three real meals and lots of snacks. Blintz for breakfast, Big Salad for lunch, grilled cheese sandwich and tomatoes for dinner. Fruit and chocolate for snacks.

I didn’t spend the day in bed! I got UP and undecorated the Christmas tree. Everything is packed up and I even tossed the tree out to the back porch. There are fir needles everywhere, and I need to disassemble the stand, but that’s a problem for another day.

Then I sat on the sofa with lovely Dave while he watched an absolutely stupid hospital drama. I put in my earbuds and listened to a podcast that someone recommended (wish I could remember who). It’s called “Something Was Wrong” and it’s true crime-style but there are no murders or anything like that. It “… aims to validate abuse victims and educate the public on important topics such as emotional, physical and sexual abuse, coercive control and gaslighting.”

There are 14 seasons so far. I started with season 1, which is about a woman who almost married a sociopath. It’s so fascinating to hear how it all unfolded! Just absolutely wild. It’s well-written, well-paced, and well-researched. Highly recommended, Kayray seal of approval!

While I listened I worked a few more circles on my blackwork sampler (pic tomorrow maybe) and got the sleeves of Henry’s cardigan to the point where they are waiting to be joined to the body at the beginning of the yoke. So happy I worked the sleeves both at once. Much easier than working one and then trying to work the second one exactly the same, ha! And I have cast on for the body and am working the ribbing.

By 4pm or so it felt like time to lie down again, so I’ve been knitting in bed. I also did my stupid boring little exercises tonight so I’m feeling VERY virtuous and proud of myself. Come on, lungs and muscles and stuff. Stay alive and functional, please.

Another good day! Remind me of this streak next time I get all moany about feeling terrible all the time. Kind of a rough night — insomnia and heavy sweating, so I think I’m working some THC out of my system again — and then I breathed wrong in the middle of the night and choked on nothing and coughed for half an hour. So I was a bit tired today but I actually got into my CAR and drove for the first time since well before Christmas. Went to the UPS place and shipped Christmas presents to Mom, Chloe, and Em. Goodness, UPS prices go up and up and up, don’t they? A nice woman saw me struggling to get my walker and the boxes up from the parking lot onto the sidewalk and hopped out of her car to lend a hand. Kind people are everywhere.

Then HOME for needlework and knitting. I’ve finshed shaping the sleeves for Henry’s cardigan, so now I just knit them for a couple more inches and then it’ll be time to set them aside and work on the body! It’s a bottom-up seamless cardigan.

Friday is the day that Clare of TheSteadyThread.com releases the weekly chart for the next stage of the 2023 Botanical Stitch-Along. It’s really fun having that new little chart to look forward to each week. The upper hex here is the new one. The lower is last week’s.

Isn’t it nifty how the designs are botanical and geometric at the same time? They remind me of William Morris wallpaper and textile designs. I love repeating patterns like that.

This evening I dragged myself out of bed again and sat with Dave in the living room for our traditional Cozy TV Time! Again, it’s the first time I’ve managed this since I got sick before Christmas and we really missed it. We watched the first episode of the new series of The Great Pottery Throwdown and the Sewing Bee Christmas Special. Ultra cozy. So nice to see Rose, Keith, Rich, and Siobhan again, and Patrick, Esme, and Sara. I do miss Joe Lycett but Sara is growing on me for sure.

Now, bread and butter and cheese, and BED BED BED. Lovely bed. Cozy bed. I hope I sleep for 12 hours.

Lying in bed for a month has made me lose any last remaining shreds of stamina. I get out of breath just walking from bedroom to bathroom. I absolutely MUST get back to doing my tiny gentle exercises again. I did a few of them while waiting for Dave to heat up his dinner, so that’s something anyway. Ugh. I need an exercise buddy to remind and motivate me every day.

Two good days in a row! And today I got out of bed and went to my sewing room and FINALLY finished making Mom’s Christmas presents, a couple dozen hankies which by now are early birthday presents. (Hi Mom, if you’re reading this! I was hemming your hankies while you played piano for me this morning!) I had bought some pretty and cheerful remnants for her hankies well before Christmas but then I focused on finishing gifts for the kids and then this stupid virus knocked me flat. Today I pressed the fabric, cut it into a couple dozen squares, and hemmed them all with my serger’s rolled hem setting. I won’t post a picture here so that Mom will have that surprise at least, but if you want to see you can visit my pixelfed feed :)

Also made another cottage pie. It’s not THAT much work, and it’s such a good way for me to eat a ton of calories (that cheesy, buttery mash) and nutrition (big assortment of fresh veggies). Today’s pie had onion, celery, a golden beet, a bit of leek, a handful of green beans, and peas. I just ate my third helping and there’s enough left for a hearty lunch tomorrow. I love it that my appetite has improved so much! Eating is pleasurable again! I wasn’t hungry for breakfast so I just drank an Ensure, but then when I was finished sewing and cooking I just did needlework and ate for the rest of the day. Those three helpings of veggie pie, a slice of really good bread thickly spread with butter, and a significant quantity of homemade peppermint bark. I just kept popping bits into my mouth all afternoon. Oh and I grabbed a slice of cheddar cheese at some point, just because I knew there was a single slice in a good ziploc bag and if Dave got to it first he would throw the bag away, while I’m obsessive about rinse-and-reuse.

Right now I’m definitely not technically “hungry” but I’m still gonna snack on my bedside hazelnuts while I watch an episode of The Big Brunch. Calories, get in me! Plump me back up!

The cough is still present and will be for some time, but it’s so much less drastic and bothersome now. I still wake up all gunky and need to clear the frogs out of my throat for ages but I’m sleeping so much better it doesn’t matter.

There was FINALLY a new episode of the Killer Psyche podcast today! After I listened to it I subscribed to her little bite-size daily podcast and am working my way through the back episodes.

I’m still not 100% over my virus but today was a Good Day!! Slept well, just a bit sweaty, didn’t wake up till after 7am. Had a long lie in, then an equally long bath and washed my hair. When my hair is clean and I haven’t braided it yet it’s a big wild red-gold lion’s mane. A certain Englishman LOVES it and gives me all the compliments *blush*

Then I ate a big breakfast of cheese blintzes, and then I unpacked the eight boxes of medical supplies that were delivered while I was in the bath. Did I mention that my insurance company is basically forcing me to switch my Remodulin delivery over to the new Remunity system? But it’s cool, they’ve ironed out some of the problems that stopped me from switching a few months ago. Long story short, I won’t need to refrigerate my meds nor order new meds weekly. Just monthly, as I do now. So I got a huge shipment of supplies, including two nifty new pumps, the remotes that go with them, four batteries, charging cables, etc. I’m in contact with a really nice nurse, Sarah, who’ll come train me next week but y’know I can read the instructions, I’m not intimidated, and I have a brain so learning a new system is no big deal. The new pumps are so tiny!

I’ve got everything plugged in and charging up. Today I read about the process for filling the medication cartridges. Easy. Tomorrow, when the batteries are fully charged, I’ll pair the remotes with the pumps and program them to my dosage. And I’ll need to sew a new little waist-pocket for my pump to ride around in, since the pocket I carry my old CADD-MS3 pump in is much too big!

We realized this morning that yesterday (the 10th) was our 1-year anniversary of moving here together! It has been such a happy year. We’ve had, what, five or six emergency room visits between us but we are still alive and kicking! Dave got his ladder out to change the lightbulbs that have been waiting a year to be changed (I am serious) but the new bulbs he bought were the wrong size so now it has to wait another year. Lol! Maybe I’ll get lucky and he’ll finish the job tomorrow and I’ll be able to SEE in the bedroom.

I ate so much today. Two cheese blintzes for late breakfast, an orange for a snack, and then the other half of my cottage pie from yesterday. Good lord it was tasty. That’s going onto the permanent rotation. It’s a bit of a job to make mashed potatoes but well worth it if I have the stamina. And I’m hungry again! Eat, Kara, eat. I’m scared to weigh myself because I know the virus kicked me way below 100lbs again. Just gonna eat eat eat for a couple weeks and then weigh myself when I feel plumper again.

Ok time to go find more food. Maybe apple and goat cheese.

Oof the tired just hit me hard but I had a pretty good day! Good sleep last night and plenty of it. Less coughing, less throat-clearing. Worked a lot on my 100 Circles sampler. Threw away sad old veggies that I never felt well enough to cook, and put away nice new veggies from our delivery box. Good stuff this week — leeks, green beans, avocados, apples, citrus, celeriac, and a big beautiful romaine lettuce, which I’ve already washed and spun dry.

I felt like cooking something so I made a perfect little veggie cottage pie. Onion, carrots, green beans, frozen peas simmered in half a cup of broth in my smallest cast iron skillet. Thyme, salt, and a spoonful of flous mixed with a little water when the veggies were tender to thicken the gravy. Meanwhile I made a little batch of very cheesy mashed potatoes. Dolloped potatoes over veggies and broiled till the potatoes were golden and crusty. Delicious!

So tired now can hardly keep eyes open and it’s not even 6pm but hey, each day is a little better, on average.

Yay the recent wordpress app update lets me post from my phone again. For a long while I could only use the wordpress app on my iPad.

Lord I’m tired. Little episodes of afib all day. A nap in the afternoon from which I awoke with a headache. Time for this day to be finished.

Another pretty good night last night. I thought maybe I was well enough to turn my oxygen concentrator back down to its normal setting but I don’t think I got enough air last night so I cranked it back up today.

Appetite good! Was really hungry for breakfast and ate my hearty bowl of oatmeal at the dining table instead of in bed. And then I was worn out and went back to bed for several hours of nothing. But then I got hungry again in the afternoon and was feeling creative so I thought I’d see what I could make with the beets we got in the veg box. Soup sounded good (soup always sounds good) so I looked at some recipes for borscht and made a rough-and-ready version of my own. Onion, beets, potatoes, garlic, beef stock, cabbage, dill, lemon juice. It turned out delicious! But gosh it wore me out to dice those veggies, darn it. Had to go back to bed and lie down while it simmered.

I’ve eaten two big bowls, and there’s enough left for Dave if he fancies it or for my lunch tomorrow if he doesn’t. I found some sour cream in the back of the fridge to stir into my second helping and that really added an extra something.

It’s 6pm and I’m just about ready for bed… gotta stay up a while longer so I’ll sit here and munch chocolate and knit for a while. I finally got my hands on Richard Osman’s second Thursday Murder Club audiobook (via the libby app) and am enjoying it so much! I think I’m too tired to knit, actually, so I’ll just listen to my book instead. While munching chocolate. Gotta ingest those calories, ya know.

Oh! I’ve done 20 circles of my 100 circles sampler! Maybe a pic tomorrow…

Omg I woke up feeling so much better today. Had a good, non-sweaty sleep with only one coughing fit that happened pretty early on so then I had many hours uninterrupted. Woke up clearing frogs out of my throat instead of coughing. Such a nice change. And so much less fatigue! Not filled with boundless energy but feeling alert and able to get out of bed, for a change. I cleaned out the two drawers of my nightstand. Put all non-essential meds back into the bathroom cabinet, threw away old crud, vacuumed out the crumbs, moved extra cables from top drawer to second drawer, etc. Now it should be easier to find what I need when I’m fishing around in the dark.

Dave went to a marquetry group meeting this afternoon and had a great time. He had even met some if the guys before. I guess the marquetry circle is small. And old. Lol. At their next meeting he’s going to demo a marquetry technique that he invented. I’m so glad he found some buddies. He’s such a sociable fellow.

I had a bath and washed my hair! And I washed a head of lettuce and made a big salad, and then Dave brought me a surprise pain au chocolat from the good bakery so that’s some good calories. I’m so thin again. Sigh.

Making progress on the circles! Sorry my photos are so dark. Will try to take a pic in daylight tomorrow.

Writing a bit earlier today while I can still form coherent sentences.

Look at my sidebar —->

I cleaned out the old broken iTunes links and added links and icons for my accounts on mastodon, bookwyrm (open-source goodreads-ish thing), ravelry, and pixelfed (open-source instagram-ish thing). And a nice new icon for my rss feed.

I always enjoy tinkering with a bit of html. And I feel proud of myself for doing a thing, despite the eternal crushing fatigue. Don’t know if my body is still fighting this virus or if this is post-virus fatigue but lordy it’s intense. My sleep has even been pretty good for the last couple days. No night sweats and only waking up a few times for not-too-brutal coughing fits, so you’d think the fatigue would begin to ease. But no.

When I wake up in the morning it takes a couple hours to clear the gunk out of my lungs and sinuses. I just sit here in bed and hack up glob after glob of gunk. No funny colors, so not a bacterial infection, and I do feel ever so slightly better each day. But it is getting OLD.

I made a couple fried potatoes for dinner — nuke a raw potato for a couple minutes until just beginning to be cooked, dice, fry on medium with a knob of butter — but I didn’t notice that the skins were green so they stung my throat (glycoalkaloids) and after the first couple bites I realized I had to skin each little chunk with my teeth.

My pulse oximeter failed today. I thought it might need new batteries, even though I just put fresh ones in last week, but nope, totally dead. I’ve had it for ten years so I guess it had a pretty long life. I ordered a new one that is bright orange and looks like a little duck. It’s meant for children but I have skinny little fingers and I want all the cute medical equipment I can find.

Chloe has been recording Little Town on the Prairie for me! Laura is having trouble with the new schoolteacher, Miss Wilder. That illustration of Laura furiously rocking the desk so poor Carrie doesn’t need to is absolutely burned into my brain.

Hey look I just figured out how to embed a pixelfed post! Copy embed code, start a new block, switch to html mode, paste in. Pretty obvious. Not sure why I didn’t try that the first time. This is the first hex in the Steady Thread Botanical Stitch-along for 2023! So delicate and pretty. She released the second hex today but I’m going to wait to stitch it until my new hoop gets here. Should be here tomorrow.

Less coughing, and when I cough I’m usually able to hack up some gunk, which then stops the coughing fit.

Zero energy. Barely able to sit up in bed. Managed some needlework. Easier to post my mastodon link here than to fiddle around uploading photos and writing more alt text. So here’s what I’ve been working on when I’m not knitting Henry’s cardigan:

https://zirk.us/@Kayray/109639255593221260

God I’m tired. So tired. So tired. Will I ever have a drop of energy again?

The SF area is expecting an insane storm and ten inches of rain. Worried about my family there. Hope they stay off the roads.

Once again, had a slightly better night and a slightly better day. Still coughing and exhausted. Needlework, napping, and audiobooks all day. I’ve got 11 circles finished on my 100 circles sampler, and I started working on the leafy border of the Botanical Stitch Along!

Lord I’m tired, so tired.

Last night there was more sleeping than coughing, and the coughing was less violent and more productive. Thank goodness. I’m far from well, but I can imagine being well someday soon. Got up and had a whole conversation with Dave while I made oatmeal this morning! Then back to bed for needlework and audiobooks and napping for the rest of the day. I finished “A Taste for Poison: Eleven Deadly Molecules and the Killers who Used Them” and went fishing around for more murder-based non-fiction. Listening to “Lady Killers: Deadly Women Throughout History” now.

Sleepy.

Cough cough cough cough cough. Didn’t sleep. This is torture.

Happy New Year! May your 2023 be pleasantly dull and uneventful.

I wasn’t sure I had an rss feed set up here but it turns out I do! So if you have a feed reader you’ll never miss a single thrilling post if you copy and paste this into it: http://kayray.org/feed/ (NetNewsWire for iOS works well and is free)

I slept last night, oh thank heavens I slept. I finally slept. I woke up three or four times with coughing fits but they were less violent and of shorter duration than ever before. I probably got in the neighborhood of 11 hours of sleep, and even when I woke up I was super groggy and just napped all morning.

Woke up a little more in the afternoon and worked on my blackwork sampler for a long time. I wrote a mastodon post about how I set up my embroidery charts in my knitting app: https://zirk.us/@Kayray/109615957175005748

I made a grilled cheese sandwich for dinner but I was so hungry I ate a yogurt while I was cooking it and therefore could only eat half my sandwich. Ah well, half a cold grilled cheese sandwich will make a fine breakfast.

Just watched the Taskmaster New Year Treat — such a great cast and fun tasks! Super sleepy now. Sleep, lovely sleep. I hope I sleep for many hours again.