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No alarms last night, which makes two nights in a row. Have I solved it, or will there be five alarms tonight? I’m on tenterhooks! But I need my brain to just chill, sleep, and accept whatever happens.

Slept nice and late, 8:30am, and no gasping for air so moving my concentrator did the trick. Even though I had a good sleep it was rather a Tired Day but that’s understandable after all the things I did yesterday. Henry came over and hung out for a few hours while he worked, which was so nice. We’re good at being quiet together. He did some chores for me (Clean sheet on my bed! All the trash emptied! And more!) and I made blintzes for breakfast and noodle soup for lunch, which he loved. He said “no notes” and took most of the leftovers home for his girls! That made me so happy *heart eyes*

I knitted and knitted and knitted. The body and sleeves of his cardigan are joined and I’m working my way up the yoke! Have just finished the second set of short rows, and tomorrow I’ll begin the yoke decreases.

No exercise (other than cooking) today. I needed a break.

Maybe I’m finally recovering from that Christmas Coughing Virus? Last night wasn’t great for sleep but I had an unusual amount of energy today anyway, and it felt a little bit easier to move from room to room and use my body.

Had a lazy lie-in and then I got UP and got the roomba started on the living room (god that robot is dumb) and then I cooked THREE THINGS! I made a batch of egg noodles so I can make yummy noodle soup soon, tomorrow maybe, since Henry is planning to come over and work-from-my-home to keep me company. Then I made a batch of flour tortillas, since I already had the stand mixer and dough hook out (oh lordy I love our new Kitchenaid tilt-head stand mixer). I hope the tortillas turned out ok. The first one was bad and dry and cracker-like, but the first one is always bad while you get the skillet temperature right. The pan has to to be just hot enough to cook them quickly, so they don’t dry out, but not so hot they burn. I haven’t made tortillas in several years so… we’ll see. They rest of the batch seemed soft and pleasant. I tried a few bites of the cracker-y one and it seemed awfully salty. Well, it was worth a try and I’ll be brave enough to try one tomorrow maybe. Ha.

And then I made a little mini veggie cottage pie! I noticed we had a bag of Trader Joe’s mixed frozen veggies (peas, green beans, corn, carrots), so that plus a small onion was exactly right to fill my skillet. That was dinner. Yum yum yum.

After I was done cooking, I went out on the porch and did my little exercises in the cool damp air. It was a little bit too rainy for a walk, but I got some good fresh air anyway.

Then I sat on the sofa and listened to my audiobook and knitted Henry’s cardigan. I got the short row shaping done on the body back, so tomorrow it’ll be time to join the sleeves to the body and start the yoke! Exciting! Audiobook is the second of Betty MacDonald’s memoirs, “Anyone Can Do Anything”. I didn’t know she had four memoirs! I’ve only ever read the first one, “The Egg and I”, but when I went looking for it on Scribd last week I found all four, yay! Not as good as Egg, but few books are.

About 4:00 it was suddenly time to head towards bed. It’s funny, it’s not like it suddenly becomes actual bedtime in the afternoon; sleep doesn’t happen for hours yet, but I get to the end of my ability to be “up” and I need my cozy bed and my pillow and my evening entertainment. Last night I finished season 3 of Succession — oh man, I’d forgotten the siblings’ Big Move and Tom’s betrayal! Absolutely cannot wait for season 4.

Tonight I’ve been finishing my rewatch of Dahmer (Had to skip the Tony episode though) and now that it’s Bedtime Proper I will switch to Taskmaster so I can try to avoid murdery nightmares.

I noticed myself gasping for air again last night, which is frustrating because that hasn’t happened in a long while, even while I was sick (granted, I didn’t sleep for coughing…) but then tonight it occurred to me to move my oxygen concentrator out of its usual home in the guest room, which is now my anti-snoring sleeping zone! Silly goose. It’s sucking the oxygen out of the air and giving it to me but then I’m also breathing the leftover depleted air. So I dragged it into the hall and opened the window wide. Gimme all the cold fresh rainy air. Sleeping in the anti-snoring zone also means I can have all the cold air I want without freezing my Englishman. :D

Tried something new last night. Right before bed I put a fresh battery in my pump and also took off and replaced the medication cartridge and let the pump do its self-test. No alarms overnight so I’ll do the same tonight.

Crappy sleep anyway because I kept waking up and wondering if my pump alarm was about to go off. STFU, brain, you’re not helping!

Pain levels back to normal. *whew*

Pump woke me up twice in the night. I’m getting used to it so it doesn’t spike my anxiety so much anymore and I was able to get back to sleep both times, though I was up for a long time at the 2am alarm because I had to unclip the Silhouette infusion connector and couldn’t get it re-clipped, which meant I had to start a new site (back to the Quick-Set infusion connector, they’re easier to manage) which meant I had to do the entire pump refill because you can’t prime the tubing a second time with Remunity. You have no idea what I’m talking about, probably, but someone might find this post, someday, and glean helpful info. Anyway I was up for a while, and very sleepy today. But I got my return boxes dropped off at UPS and ate an ENTIRE veggie burrito for lunch!

Went back to bed around 2pm, just too tired to stay up. Had a short actual nap and then just zoned out in bed with my devices silent for the rest of the day hoping, and failing, to sleep some more. Knitted a lot — nearly ready for the short rows on the back of Henry’s cardigan. Tomorrow for sure.

Oh man, VLC Streamer Pro is my new best friend. I’ve been rewatching comfy old stuff, alternating between the third season of Succession, the 8th season of Taskmaster, and the Dahmer miniseries.

Ate the last of a tub of tzatziki, an apple, and a hunk of cheese for dinner. Real cooking tomorrow I hope.

Ok, pain level has dropped from “agonizing” to merely “severe” so I can form sentences again lol.

Yeah, so that’s what happens when you start a new Remodulin infusion site in an area that’s not used to it. Pain beyond imagining. So it’s back to comfy old scarred-up sites for me, thank you very much. I’d rather be woken up by false alarms at night than go through that pain.

Since the false alarms only happen at night, maybe it’s because I sleep without moving? And somehow that plus my scar tissue confuses the pump? I dunno, I’m grasping at straws here. Last night, every time I woke up a little bit I wriggled and kicked the leg with the infusion site, to stir things up. And had zero alarms. Probably coincidence, but I’ll keep doing that until it proves pointless.

Dave has just left to work in the Bay Area for a week or two, BOO! But I’ll be ok. Going to try very hard not to have any emergency room visits while he’s gone. *eyeroll*

Oh! I discovered the most amazing app! I keep my TV and movie collection on an external hard drive that’s plugged into my laptop on the coffee table. What I wanted was to be able to magically stream media from there to my iPad or iPhone while I’m in bed. So I searched (I don’t use google anymore; switched to Duck Duck Go) and discovered VLC Streamer Pro. ($5) There’s a free version so you can test it. Omg it JUST WORKS. You install a free helper app on your computer (mac, pc, maybe linux too), make sure all your devices are on the same network, and bingo, you’re streaming your media!

Once in a while the video gets stuck, but a quick quit-and-restart fixes it. No big deal. I believe the app copies the file to your device as it encodes it, so you don’t need to wait through buffering again.

Pain

Last night I was so terribly thirsty that I drank a ton of water and had to get up four times in the night to pee, but was able to fall back asleep quickly each time. I might have forgotten to say that my specialty pharmacy sent me a different kind of infusion set to try (that’s the contraption that shoves a catheter into your flesh and connects to the medication pump). I’ve been using one that sets the catheter perpendicular to your skin, but since I don’t have much subcutaneous fat we’re trying one that can be inserted at a shallow angle. So I started two new sites yesterday afternoon — one in the old scarred zone where my body is accustomed to the meds, and one in a nice fresh area where the pain will be INTENSE. Comfy for daytime, painful for nighttime, since that’s when the pump complains.

Last night went well on the fresh site. No alarms until the pain got intolerable and I took a chance on switching to the comfy site, just in case the shallow angle would be helpful enough. And then I got an alarm again. So, I just need to tolerate the intolerable. Eventually it should settle down. Tomorrow I will need to start two new sites on the OTHER leg and start the pain clock over again. Gah.

I used the comfy site all day today but the Painful Site has been killing me still, from exposure to the meds overnight. Can barely walk. It’s like knives. That bit of my thigh is swollen and hot, and it burns burns burns. Remodulin is a POWERFUL vasodilator so every bit of that area wants to expand all at once. OUCH.

Tonight will be really hard. I’ll take all my ice packs to bed.

Too much pain for walks and exercises today. Bah. Tomorrow I’ll try to do my arm and shoulder exercises at least.

Cooking German-style sweet-and-sour red cabbage for dinner (Rotkohl).

Oo typing “Thursday” reminded me that there’s a new episode of the Taskmaster podcast!

Last night was good! I slept straight through the night, no alarms, no insomnia, didn’t even wake up to pee until 6:45am. I guess I hadn’t realized how much Dave’s snoring and moaning had been waking me. So it’s the guest room for me for a while. I’m terribly thirsty tonight and absolutely chugging water so I’ll probably be up a few times in the night but maybe without all the snoring I’ll be able to get back to sleep more easily.

I spent half an hour on the phone with the CVS specialty pharmacy to reorder my Remodulin and supplies, it was kind of funny because it was my first time reordering Remunity supplies, and it was my rep’s first time filling a Remunity order, so we had to help each other along. :) Then I went to the doc for a chest echo, a cardiology appointment, and lab work. All good! Chest echo didn’t show any scary changes, and she agreed that my sudden terrible weakness and fatigue is almost certainly the result of being bedridden for a month. Taking my little walks is the right way to get some stamina back again. *whew* A relief.

When I got home Dave taught me to make his amazing fudge. Omg it’s good. He just has it written down in his notes but I found it online so I could share with you! No candy thermometer needed, just cook it to the soft ball stage.

https://www.bbc.co.uk/food/recipes/fudge_93112

And then I kinda crashed and did nothing all evening, but a well-earned nothing for sure.

Weird churning stomach, no appetite, big fatigue, headache. Dave feels the same. Ugh.

In the morning I managed my little walk, though. Eight and a half minutes, very slowly, but with no breaks. It was a little bit easier to go up our hill today, I think, but also I wasn’t fighting the wind so who knows.

The snoring is EPIC lately — he’s in all kinds of pain and needs to sleep on his back — so it’s the guest room for me tonight. But it’s very very comfy so that’s ok!

Finished the 100 Circles sampler yesterday and blocked it today, yay!