Montag

October 3rd, 2022 — 9:59pm

Felt pretty good today! Good long sleep last night (but night sweats the whole time ugh). Entertaining dream about a pygmy hippo moving in with us. The hippo spoke perfect English, and when I made some comment about that seeming unusual, she asked how many other pygmy hippos I’d spoken too. Apparently they’re all fluent but we self-centered humans never bothered to have a chat and find out. Ok, brain.

I did my darn exercises tonight while we watched Australian Bake Off.

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Sonntag

October 2nd, 2022 — 7:07pm

I did my darn exercises today. I HATE doing my darn exercises. But my doctor says they might help, so…

We just finished watching yesterday’s episode of Strictly Come Dancing. Ranger Hamza did ok, not as well as last week but not at the bottom of the pack either. Come on, Hamza! You can do it! I definitely have a weakness for cuddly men, and he has the sweetest smile :D

I got my sewing patterns sorted out and organized! I had them just sort of jammed into three binders — baby, kid, and adult — but now they’re in nice big envelopes by type. So, all the baby pants are in one envelope with sizes noted, and all the girls’ sundresses are together, etc. It’s going to be so much easier to find what I’m looking for and to avoid tracing off a size that I already have. This was the first step toward Wrangling My Sewing Room Into Shape. Next, when I have the stamina, I’ll pick up the fabric off the floor and tidy up the surfaces. Need to make the room habitable ’cause Mom is coming next week and it’s also the guest room.

Hot again but only 80s. No rain in predicted in the near future. Argh.

We got a red cabbage in our veg box last week so tonight I made German-style Rotkohl (red cabbage). Onion, red cabbage, diced green apple, pinch of cloves, dash of red wine vinegar, spoonful of homemade peach jam, all cooked together till soft. Yummy! Dave ate a big scoop with his chicken and potatoes dinner and said it was GREAT. I wish I enjoyed eating as much as I enjoy cooking.

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Samstag

October 1st, 2022 — 10:16pm

Slept much better and till 9:30 am so that made the day much much better! I set up my Switch in the living room so I could play Dorfromantik on the big screen and show Dave. I’ve only played classic mode so far. Maybe I’ll try a different mode tomorrow.

This afternoon we watched the wonderful Bettany Hughes explore Egypt down the Nile on Channel5.com. Excellent.

My health is so frustrating right now. Besides being an absolute skeleton, I’ve had more severe PAH symptoms for the past couple weeks. Like, I can’t walk from room to room without stopping to catch my breath, even on supplemental oxygen, and when I read to Dave at night I need to stop for frequent breathers. Ugh. Tomorrow I plan to start up my pulmonary rehab exercises again — I had to put them on hold while we had a few months of brutal summer temperatures and then my bruised/cracked rib happened. Still hurts but I think I can do most of the exercises anyway. Maybe they’ll help my breathlessness.

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Freitag

September 30th, 2022 — 5:01pm

Happy fifth birthday to my darling Lulu!!! I was sort of in their neighborhood today (after a morning mammogram ugh) so I stopped by with Henry’s birthday book (hardback, Project Hail Mary) and Lulu’s birthday apron, and half the lemon-blueberry loaf I baked yesterday.

I sat down on the floor, there being no cleared-off sofas or chairs, and the Small Dumpling marched over and plunked herself down in my lap. Omg she is squeezable!

Feeling rotten today. Rough morning, had to get up early to finish decluttering for the cleaning crew in a big hurry and then had to go for mammogram. Short of breath, headachy, new chesty cough (why? why?). So I’ve been in bed since I got home. Tomorrow is another day.

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Donnerstag

September 29th, 2022 — 9:27pm

Today was better! I don’t know why, but I’m glad to feel normal-exhausted instead of abnormal-exhausted.

We decluttered somewhat for the cleaning crew tomorrow, and I baked a lemon-blueberry loaf (reduced sugar to 1/2 c). And I sewed a darling red gingham apron, trimmed with white rick-rack, for a certain little girl who turns five tomorrow!

Brand new Taskmaster tonight and it’s off to a great start :D

Forgot to say — we finished The Martian last night! Tonight we started Artemis. God I hope Andy Weir is writing another book for us.

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Mittwoch

September 28th, 2022 — 8:37pm

Why. Am. I. So. Tired.

It’s just crushing. Every day. I can barely function. Not sleepy, just physically exhausted. I wake up exhausted. Am I depressed? Am I sleep-deprived? Am I anxious? Is my heart failure worse? Is my thyroid kicking up a fuss? Have I just had a string of random Tired Days? Do I have a new Mystery Illness? Ugh.

Today I had to go to the store and do the dishes. And then I scraped up enough wherewithal to make a spinach lasagna. And then I just pretty much went back to bed.

The house cleaners are coming on Friday which means tomorrow we need to declutter as much as possible, so that will be that, most likely, unless I miraculously wake up feeling well-rested. I have the components to sew a little red gingham apron, trimmed with white rick-rack, for Lulu’s fifth birthday present — if I can find the stamina.

There is so much I want to do. This is beyond frustrating.

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Dienstag

September 27th, 2022 — 9:49pm

Ugh so tired so tired. Crummy sleep for several nights in a row.

Happy 27th birthday to the best son in the whole wide world!

We had two crews here working all day and the noise was EPIC. The HVAC people finished up and we now have a silent and well-functioning heat pump and AC. I got so cold during the test run that I had to wrap up in a blanket. Ugh. I hate AC except for when it’s 90° in the house, so it’s comforting to know we can stay at a nice reasonable temp during the next heat wave.

The other crew was a yard crew! Our yard was Out Of Control. Knee-high grass that looked like a hay field and head-high dandelions and other weeds — great for the wildlife, but it was time to make it look nice again before the rain starts up. They worked all day, and it’ll look great once we get some rain and the grass comes back to life!

It’s supposed to rain tomorrow and Thursday… fingers crossed.

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Montag

September 26th, 2022 — 8:19pm

Tired. So tired. Did nothing. The HVAC crew got started on our new heat pump and AC!

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Sonntag

September 25th, 2022 — 9:08pm

Rough night last night — my Remodulin pump woke me up claiming there was a blockage, which is always a lie and can be fixed by removing and replacing the battery, but that means I need to wake up enough to find a coin to unscrew the battery cover. And then around dawn I had a fun-filled Sudden Bathroom Emergency. I managed to get back to sleep both times and slept till 11, thank goodness, but I was a bit sluggish today nonetheless.

I’m eating my nightime bowl of cottage cheese while I write this. The lovely double-cream stuff I told you about a few days ago is incredibly good but just a bit dry in texture, so I always add a splash of heavy cream. But I still weigh 98lbs, arghhhhhhh.

Here we are baking muffins yesterday *heart eyes*

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Samstag

September 24th, 2022 — 11:23pm

The kids came over today! I had been planning to bake corn muffins, so I waited till they got here so Lulu could bake with me. Sweet little soul. I baked with Henry when he was little, I baked with Em, and now I get to bake with Lu. I’m so lucky! And the muffins turned out great!

Yes, I’m frighteningly thin. Hate looking like a skellington. I’ve been eating so much better, too.

It was so great to see them all. The baby is a world class toddler now. She marches around with a huge grin on her face, just tremendously busy. And Lulu is my darling beloved little friend. And Henry and Jayla are such wonderful people! I admire them so much. They are truly excellent parents, and it’s obvious how much they love and respect each other. Heartwarming.

As I said yesterday, I couldn’t get my message notifications to work no matter what I did, even with a settings reset, so I did a factory reset on my phone this afternoon and now it’s FINALLY notifying me correctly! Hallelujah! Dave thought I was crazy not to restore from a back-up but I really enjoy setting up a “new” device, all minty-fresh and not full of crusty old forgotten apps and tangled settings.

Funny thing though — when it came time to sync my iTunes playlists, I was perplexed to find that iTunes was no longer installed on my laptop. Hmm, thought I, I guess Apple deleted it when my laptop was in the shop a few months ago. So I tried to reinstall it, but couldn’t find a download link for a version that would work with Monterey, which Apple installed while said laptop was in the shop. Some head-scratching and googling later, I discovered that iTunes no longer exists! It’s just music.app now. And good riddance, I say! What a piece of crap iTunes had become.

I imported my music into, um, “Music” (I’m sure Apple think they are cute and slick naming things “Music” and “Pages” and “Numbers” but damn if it doesn’t make it hard to google for info about those apps) but of course I had to create all my dozens of playlists all over again, which, again, is a chore that I find pleasant and entertaining. A deep dive through my library always turns up a bunch of audio that I’d completely forgotten about, including Elli’s homemade recording of “Charlie und die Schokoladen Fabrik”! (A German translation of Charle and the Chocolate Factory)

It took many hours to get all my settings tweaked, my apps set up (so many log-ins), and my playlists recreated, but I’m close to finished. And as of bedtime my notifications still seem to be working. Tomorrow I’ll sync my music and playlists over, reload my favorite photos, fix my wallpaper, and that should be that. Until everything goes haywire again, lol.

We started watching the first proper episode of the new season of Strictly Come Dancing, but it got late and we needed time for a chapter of The Martian (Mark Watney is in trouble again) so we’ll finish the episode tomorrow.

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Freitag

September 23rd, 2022 — 9:37pm

I’ve been fighting with my phone today… for several weeks it has been informing texters that I have notifications turned off, when I don’t have notifications turned off and indeed am getting notified properly. So I googled that issue and found some possible solutions, which I tried, with the result that my phone no longer notifies me of texts but doesn’t tell texters that I have notifications turned off. Which is true — I don’t have notifications turned off, but I get no notifications anyway. Sigh. So, if you text me I won’t know it until I actually check my messages app. Triple sigh and an audible eyeroll. ANYWAY. First world problems, right?

Bad sleep, tired all day. Made my famous cheesy potato-carrot soup and sat on the couch eating bowlful after bowlful which finishing “Dahmer” on Netflix. So good, and so infuriating. It’s really a story about systemic racism: Dahmer wasn’t caught sooner because his victims were predominantly young Black and brown gay men (and who cares about them right?), and the neighbor who called the cops over and over and over again, reporting that she smelled rotting flesh and heard power tools and screams, was a Black woman who was also ignored. STOP BEING RACIST, EVERYONE. Just stop it. It’s not hard to simply not be a fucking racist. Try it sometime.

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Donnerstag

September 22nd, 2022 — 10:02pm

A good day! Rib pain tolerable, and I can blow my nose without screaming. Sneezing/coughing still makes me scream but it’s getting a little better every day. Dave too! He has had to sleep on our reclining sofa for weeks because he couldn’t get in/out of bed, but tonight he’s trying the bed again! Yay!

Cardiology appointment this afternoon went well. I explained how I deduced that the liothyronine was causing the worsened heart rhythm etc and she agreed and said stopping that drug was totally the correct thing to do. She seemed really proud of me for figuring it out on my own! She took a listen and said my heart sounded strong and steady (relatively speaking of course), and it sounded good enough that I didn’t need an ekg. My current labs look good too, and there’s nothing to indicate that my recent SVT was caused by anything other than the liothyronine. But of course I’ve had SVT and A-fib many many times before the liothyronine, and she said it will probably happen more often as I age. Ugh. So, I keep my go-bag packed, and Henry and Dave have orders to tell the EMTs and ER docs that A) it’s not a heart attack and B) don’t pump me full of fluids and C) don’t try to get my oxygen saturation up to 100% cause that ain’t happening and it’s dangerous to try.

I stopped at New Seasons (excellent co-op style natural foods grocery store) for cottage cheese, onions, and dill. I discovered they carry double-cream, full-fat, all-natural, cultured cottage cheese! I love cottage cheese and have been eating a lot for the protein, so I bought four tubs.

Then home, couch, resting, video games, Dahmer, and brand-new Survivor with Dave, then I read him a chapter of The Martian and now it’s sleep time.

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Mittwoch

September 21st, 2022 — 9:08pm

Felt pretty good again today! Still not really gaining weight (99.4 lbs today) but eating much better. My stomach doesn’t complain so much, and I can eat a little more at every meal. I finished off my spinach lasagna today. Damn it was good. Gotta make it more often.

This morning I whipped up a batch of oatmeal chocolate chip cookie dough and froze it in ready-to-bake lumps, so we can bake a few cookies when we want them. And of course I baked a few right away so we could test them :D They’re a little salty, which I like, but Dave isn’t a salt fiend like I am. I think I may have used a whole cup of salted butter. Oops!

I spent the afternoon watching the new Netflix miniseries about Jeffery Dahmer. I’m exactly halfway through and it’s really really good. They never try to make me feel sympathy towards him, which is as it should be. It’s so interesting! What causes a mind to twist so thoroughly? Many factors, obviously. Fascinating stuff.

Ribs still hurt but a little less, so I can get up off the sofa without screaming. Dave’s the same — a little better every day. He was able to sit upright for hours and hours today, in zoom work meetings. God he’s adorable. I love that man <3

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Dienstag

September 20th, 2022 — 10:01pm

I was awake for a little while around dawn but I fell back asleep and slept till 10am, which means I got around ten hours of sleep, maybe more. So I felt fairly splendid today and took care of some chores that had piled up. Took the kitchen scraps out to the compost bin, did several days’ worth of washing-up (so much cuter than “doing the dishes”), put away my clean laundry, watered the garden, harvested more tomatoes, and put away our produce delivery. Excellent selection again: lettuce, zucchini, potatoes, apples, nectarines, green beans, garlic, corn, apples. We have so many cherry tomatoes hanging around that I popped some in a very low oven to start dehydrating. Will finish them tomorrow as they’re not quite dry enough yet but I don’t want them to go all night unsupervised.

And then I was worn out and played “Bear and Breakfast” and “Trainyard 2” (an iPad game, which I’ve been playing for MONTHS. Really enjoyable).

Rather warm again today — 84° I think — which is fine but I want rain. Please, rain, come back to Portland, we miss you.

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Montag

September 19th, 2022 — 8:01pm

God my ribs hurt SO MUCH tonight.

Lazy day. Didn’t even do the dishes, but I did make a beautiful stir-fry for dinner and a little batch of peach jam. We had two very large peaches that were a little bit past their prime and now we have a nice container of jam. I put a spoonful on my serving of stir fry — yummy!

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Sonntag

September 18th, 2022 — 10:01pm

Grocery store in the morning to get cornflakes for Dave and a few other things that Trader Joe’s doesn’t stock (tinned water chestnuts, cornmeal, allspice, pectin…) And then… lots of Bear and Breakfast, tv with Dave, and moaning about our aches and pains.

Oh, Mom played Bach for me over FaceTime again! We had a break for a couple months because it was just. too. hot. But now it’s cooling off, finally! I’m watching my weather app obsessively, hoping for rain, but there’s not much yet. Slight chance next Thursday, and a better chance the Tuesday after that. And then it will be October. Surely we’ll get lots of rain in October, right??

I was craving something sweet (rare for me) so I baked one cinnamon roll for my dinner. Dave hates cinnamon (and carrots, and celery, and cilantro, and coffee…) so I found a recipe for an Epic Single Cinnamon Roll! I reduced the sugar by quite a lot and it was *chef’s kiss* perfect. And huge. I could only eat half.

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Samstag (evening)

September 17th, 2022 — 9:42pm

Dave is such a wonderful companion. Even though we’ve both been feeling rotten and in pain for weeks, we still don’t quarrel and we still love being together. Don’t know if I mentioned it but when we finished Project Hail Mary, we started The Martian the very next night. We’ve had to miss a few nights of reading because one or the other of us just felt too crummy, but we’ve managed most nights and have finally gotten to “Rich Parnell is a steely-eyed missile man!”

I made a kick-ass spinach lasagna today. And played a lot of Bear and Breakfast. And we watched Peep Show, Digging for Britain, Only Connect, and Great Australian Bake Off. And Dave watched some of his awful shows while I played on my Switch and cooked. Lol. He likes some ghastly thing about property flippers in… Vegas? All the women have had terrible plastic surgery and the men are total dicks. But he finds it soothing so who am I to judge? That’s what they make earbuds for :D

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Samstag (morning)

September 17th, 2022 — 9:31am

Looks like the liothyronine was the cause of some of my current woes! After stopping it two days ago, I woke up this morning after a good sleep (no insomnia, no night sweats, nice slow awakening) and checked my stats: oxygen saturation 94%, heart rate 76 bpm in sinus rhythm! Those are better numbers than I’ve seen in literally weeks.

I was on the liothyronine to try to get my thyroid function back to normal in case that’s what’s causing my poor appetite and weight loss, but I’ll live as a 98lb skeleton if it means my heart and lungs have an easier time.

Both my GP and my palliative care nurse Adam say that people with serious cardio-pulmonary issues burn insane amounts of calories just staying alive, so that’s probably part of what’s going on. No matter how much I eat I’m just never going to be able to get enough calories to break even, let alone gain weight, which can explain why I’m not gaining even though I’m eating a lot more.

Plans for the day: Arise. Eat something, maybe oatmeal with the last of my homemade apple-pear butter. Cook something, maybe spinach lasagna. Maybe start organizing my sewing patterns so I don’t need to sift through the entire pile every time I want to make something, OR (more probably) play Bear and Breakfast all day while watching stupid tv with lovely Dave <3

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Freitag

September 16th, 2022 — 7:23pm

Dave is still on the fancy pain meds (though only one a day) so I drove him to his doc appt and then Trader Joe’s. I am wiped out. Green beans and corn on the cob for dinner. Survivor, Bake Off, bedtime.

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Donnerstag

September 15th, 2022 — 9:45pm

Slept better. And I realized that my new thyroid med liothyronine (boosting my T3) can cause… insomnia, racing heart, worsening arrythmia, and worsening atrial fibrillation. Sigh. So I messaged my endocrinologist and got permission to skip those pills for a few days and see if my heart settles down. I also have permission from cardiologist to increase my Amiodarone back to 200mg, but I’ll wait on that till after the liothyronine experiment. Gahhhhhhhhhhhhhhhh. Too many docs, too many drugs, too many side effects.

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