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Torstai again

January 26th, 2023 — 4:40pm

I baked those chocolate chip cookies today and they are phenomenal. I used a different recipe than usual and they’re WAY better so this is my new chocolate chip cookie recipe forever! I baked about half the dough and froze about half in lumps to bake later.

Best Chocolate Chip Cookies


1 c butter, room temperature
1 c white sugar
1 c packed brown sugar
2 eggs, room temperature
2 tsp vanilla extract
1 tsp baking soda
2 tsp hot water
½ tsp salt
3 c all-purpose flour (note says can sub 1c flour for 1.5 c oats, have not tried)
2 c semisweet chocolate chips (one sack is enough)


Oven to 350 degrees F (175 degrees C).
Beat butter with all the sugar until smooth.
Beat in eggs, one at a time, then stir in vanilla.
Dissolve baking soda in hot water. Add to batter along with salt.
Stir in flour, chocolate chips.
Drop spoonfuls of dough 2 inches apart onto ungreased baking sheets.
Bake in the preheated oven until edges are nicely browned, about 10 minutes. (12.5 in my oven. Sit and watch!)

We treated ourselves to a new Kitchenaid tilt-head stand mixer for Christmas to replace the crummy bowl-lift model from Costco that we had been using and omg it is SO MUCH BETTER. Plus it’s bright red and shiny. Oh it’s wonderful, so wonderful. I want to mix ALL the THINGS. Mix mix mixxy mix!

And then I sat on the sofa and did embroidery and listened to podcasts, and then I made an actual dinner of polenta with tons of Parmesan stirred in and a chunky sauce with onion, red pepper, and eggplant. I’ve just eaten a healthy bowlful and will have second dinner and possibly third dinner later, heheh.

The difference to my mood and energy that’s made by better sleep plus relief from anxiety is astonishing.

Daylight photos of the 100 Circles sampler!

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Torstai

January 26th, 2023 — 8:02am

Good morning! I think we’ve solved it. No pump alarms last night, and every clue adds up perfectly. We need a few more alarm-free nights to be sure, of course, but the relief is almost overwhelming. I’m not crazy, I’m not jinxed, I should be able to use my new medication pumps with minimal problems. I will be able to SLEEP.

I will reiterate everything in this post for those in future who might have the same problem.

I’m a Pulmonary Hypertension patient on Remodulin (Treprostinil) I’ve just switched over from the CADD-MS3 sub-q system to the Remunity sub-q system (made by United Theraputics).

I immediately had a problem with the pump and its remote waking me up at night, over and over, with a wide variety of false alarms. This happened only at night. The company shipped a new set of pumps: same problem. They shipped a new set of internal batteries: same problem.

The pump and its remote are sensitive to RF interference, so I tried disabling my Bluetooth devices at night (illogical, because if they were interfering at night they’d interfere in the daytime) and also my Apple Watch (same). Nothing helped. I spent every day for a whole week in tears from sleep deprivation and anxiety.

Finally in desperation I tried sleeping in the guest room. No alarms. Ok, so what was different about my bedroom? Henry, wonderful Henry, suggested Dave’s CPAP machine. I said nah, he hasn’t used it in months, but then Dave realized that his CPAP machine was still plugged in and phoning home to Kaiser at RANDOM TIMES OVERNIGHT using cellular, which is a very strong RF signal — stronger than Bluetooth and wifi.

He unplugged his machine and for good measure moved it to the opposite end of the house and I took a chance on sleeping in my own bed again.

No alarms last night. None. NO FALSE ALARMS.

So if you, too, are using the Remunity system and are experiencing false alarms, check for CPAP machines or other equipment that might be automatically phoning home during the time that you’re getting the alarms!

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Keskiviikko

January 25th, 2023 — 6:07pm

Much to report!

Slept in the guest room last night. I woke up many times from pain, nausea, and headache but there were NO FALSE ALARMS from my medication pump. So my overall quality of sleep was ok-ish and I felt human again today, if fatigued. I also had the great relief of thinking, ok, well, if we can’t figure it out I can just sleep in the guest room forever. Sigh.

When I gave this status update in our group chat, wondering what on earth is different about our bedroom at night, Henry asked if it could be Dave’s CPAP machine. I said no, ‘cause he hasn’t used it in months. But then Dave said AH HA! The CPAP machine is still plugged in and it phones home to Kaiser in the night to transmit diagnostics over cellular, which is a strong RF signal (stronger than Bluetooth or wifi).

This would explain everything. Why the false alarms only happen in the bedroom. Why they only happen at night. I almost don’t dare to hope, because if this is not the solution then… yeah well let’s not think about that. The CPAP machine is now unplugged. I’ve moved all my sleeping equipment back into our bedroom. My fingers are crossed.

I thought very hard about baking cookies today and set out the butter and eggs but then I ran out of steam and decided I’d be better off not pushing myself too hard on only a semi-decent night of sleep. Butter and eggs can sit on the counter overnight. It’s encouraging that the thought of baking even crossed my mind. It’s been since before Christmas that such a thing even seemed possible.

My wonderful palliative care nurse, Adam, called yesterday to check on me and set up an appointment for a visit. I told him I’m really worried about how out-of-condition I am now after lying in bed for a month, but that it makes me really nervous to do my stupid boring little exercises in case my heart rate elevates and doesn’t go back down. It’s SCARY to be this weak and fragile. I can barely lift anything. I can barely walk. I’m sure if I could do a little bit of safe exercise and strengthen my muscles I’d feel stronger and better.

Adam said he should be able to get a home healthcare person to come over and help me with my exercises, and suggest others, and monitor me while I do them so I don’t feel so fearful! He’ll be here next week for our appointment and then he can set me up with that service.

Still eating like a horse. Oatmeal for breakfast today, and then an absolutely JUMBO quesadilla for lunch. A month ago it would have taken me two days to eat that much. Not sure about dinner. It’s 6pm now and I’m still full from lunch, so I’ll probably fix an apple and cheese to munch on while I get sleepy, and then snack on mini pretzels and peanut M&Ms (which is an amazing combo, btw. Sweet and salty and nutty and crunchy)

Discovered that I had totally missed the second season of the Killer Psyche podcast, thanks to Amazon Music’s abysmal app design, with the result that I’ve had lots of new-to-me episodes to binge over the last couple of days. As of now, though, I truly have only one unplayed episode. I’ll switch back over to the Something Was Wrong podcast next. Have also been enjoying old episodes of The Taskmaster Podcast. That one soothed me back to sleep several times last night.

I stopped having any luck with the “Nothing Much Happens” bedtime stories podcast. I think I need to be at an exact level of sleepiness before I put it on or it just bores me to tears and irritates me. It makes me think about sleeping, too, which is counterproductive for me. I need to sneak up on sleep from behind and pop a bag over its head by listening to something of the exact right interestingness so that I can tell myself, “it doesn’t matter if I fall asleep, I’ll just listen to this lecture about the history of English or this silly moment-by-moment analysis of a Taskmaster episode until morning”. And that can help me get to sleep.

Another trick I use to settle my mind is to type out a mental transcript of whatever I’m listening to. So I actually see the words printing out on a sort of ticker tape in my imagination. When my mind wanders, I bring it back to its transcription task. This has been working pretty well lately.

3 comments » | Blog

Tiistai

January 24th, 2023 — 5:43pm

Good news and bad news. No false alarms in the night with my Apple watch on the dock instead of my wrist. (But there was one at 7:30am when I was already awake.) However, I had a terrible night anyway. Dave’s back was hurting when he came to bed (I was already asleep) and his moaning and groaning and snoring woke me up and I lay there for two hours before falling back asleep. And then I had to get up three times to pee, and had unquenchable thirst, and stomach issues, and a variety of pain, and my brain was hypervigilant, expecting BEEP BEEP BEEP at any second, so every tiny noise woke me up through my ear plugs.

And the bad news is that I was unable to trigger a false alarm in the daytime. This is bad news because it proves my hypothesis wrong. I strapped the pump’s remote to my wrist to keep it near my watch all day. I started an infusion site in the middle of a big patch of scar tissue (from stabbing myself with a needle every other day for six years) in case scar tissue was clogging things up. (I also have a scar-free site started for nighttime, just in case it IS a problem, and that’s why I’m having intense pain at night. This medication is so vile that it causes horrible, unspeakable pain while your body gets used to it. Old scarred site is used to it; new unscarred site is not)

Tonight I’ll sleep in guest room for real, if only to eliminate Dave’s moaning and groaning and snoring until my brain chills out and learns to sleep through it again. Maybe, magically, there will be no false alarms. Maybe.

So today I mostly cried and ate.

1 comment » | Blog

Maanantai

January 23rd, 2023 — 5:47pm

I woke up at about 5:30am wondering why my pump remote hadn’t woken me up that night with false alarms, and then awakened myself completely by analyzing the situation. Lol, thanks brain.

One thing was different — I usually wear my apple watch all night because it checks my heart rate and blood oxygenation several times and sends a record to my phone, and I sleep with my hands tucked under my pillow with my pump remote nearby, but last night I forgot to take my watch off the charger and wear it. Now… it certainly is an interesting coincidence. But I’ve had my watch and pump remote in close proximity for hours and hours in the daytime with no false alarms, so I’m not counting on this being the solution. I’ll leave my watch off again tonight and see what happens. It’s a possibility at least, and I’m clutching at straws.

Anyway I was up BRIGHT AND EARLY to take care of the clutter before the house cleaners came, and had to take a nap at 9am. Slept for a whole hour and then felt pretty ok for the rest of the day. House cleaners came at 1 so now the house is all clean and nice again. Though I made a stir fry for dinner and smoked the place up so it doesn’t smell quite as nice as it did when they left. Oops. It wasn’t even a fabulous stir fry. I overcooked some of the veggies, distracted by the shrieking of the smoke alarms, and undercooked the rice. Oh well, it was edible and put nutrition and calories into me.

We have finished all the peppermint bark I made over Christmas, but I still have a box of candy canes so all I need is some more chocolate and I can make another big batch. Peppermint bark: it isn’t just for Christmas!

I’ve finished sixty-five percent of my one hundred circles sampler! All the red, purple, violet, orange, and yellows are done. Now I’ve got the beautiful blues and greens remaining. Yes I did it that way on purpose. Blues and greens for dessert. Maybe tomorrow I’ll get a good photo. The sun is supposed to come out.

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Sunnuntai

January 22nd, 2023 — 5:26pm

Alarms in the night again. But all before 2am so I was able to go back to sleep each time. But then I had a ton of infusion site pain and stomach issues so I was up at 5am anyway. But then I dozed off on the sofa and went back to bed and slept for an hour. So yeah. I’m basically ok today. I’m tired of complaining about my pump alarms waking me up so here’s what we’re gonna do. You just assume that my pump wakes me up several times every night and I’ll tell you if it DOESN’T. Sigh. I’ve found contact info for United Theraputics so maybe I’ll call them on Monday, though that sounds like a miserable exercise in frustration.

I figured something out today. Our fruit, which we leave on the counter, goes bad really fast. REALLY fast, like we can’t leave an apple out for more than a week before it starts going wrinkly. In summer, sure, that’s what I’d expect, but in winter? In winter I’m used to being able to leave fruit out for weeks and weeks.

Today I realized that I’ve lived my entire life in houses that, in winter, are like 65° in the daytime and a lot colder at night. But Dave likes to keep the house at 70°! Our fruit thinks it’s summer all year! Lol! So I have just put the fruit bowl into the fridge.

Forgot to say last night I made a big bowl of very cheesy mashed potatoes for dinner — seriously, they were almost more cheese than potatoes — and I ate about half of them last night and the other half cold for breakfast this morning. Ate a nice big salad for lunch, some fruit and chocolate for snacks, and now I’m cooking some polenta and I’ll sauté some peppers and onions to put on it.

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Lauantai

January 21st, 2023 — 7:55am

Writing this at 7:50am. Awake since 3:45am, when my pump alarm went off. Bogus, again. Lay there awake waiting for the next alarm. When it went off I tried again to sleep but was too wired and anxious, so I got up and did all the dishes.

My pumps have an internal battery that’s supposed to be replaced once a year, so the specialty pharmacy had sent me a couple yesterday, in case the new set of pumps also gave me trouble, so now I’ve replaced THOSE.

Why do the bogus alarms only happen at night? Well, one happened in the afternoon once, but only once. All the others have been between midnight and 7am. Why, why, why.

I’m a wreck. I need to trust this equipment to keep me alive. United Theraputics, you suck at product design and reliability.

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Perjantai

January 20th, 2023 — 6:18pm

Awoken twice in the night by bogus Remunity pump alarms. One was LOW BATTERY, which turned out to be at 85%. The other was MOVE PUMP CLOSER TO INFUSION SITE, which, as stated before, is utter nonsense. But, this morning UPS dropped off a whole new set of pumps and remotes. Charged them up, paired them, got one going. Then did nothing but blackwork for the rest of the day. It’s so addicting! I keep thinking, I’ll stop after this circle and do something else… and then I just keep going. It’s satisfying to see the little geometric patterns coming together and filling out.

Wanna hear something stupid? My new pumps assume you are filling them with a certain amount of meds (2.2ml) that will last 70 hours. (don’t get me started on how stupid THAT is. Think about it.)

However, I need to change every 48 hours because of my adhesive allergy. So the pharmacy told me to put in 1.5 ml. But there is NO WAY to tell the pump that I’m putting in a smaller volume of meds. There’s literally no way. 2.2ml is hard-coded. So, it thinks I have almost three days worth of meds when in fact I have 48 hours. I hope. I can’t actually see how much is in the pump. So… I hope I measured correctly.

Luckily I’m smart enough to use a calendar and alarms to remind me when 48 hours are up so it doesn’t really matter. But… wow. Who signed off on THAT?

Did you figure out why filling a pump with 70 hours of medication is so stupid? People who put in 2.2 ml at 4pm one day need to change at 2pm the next time, then noon, then 10am, etc. Nurse says, when it gets to be too early in the morning, you do it the night before and start the whole countdown over again. Oh. My. God. You’d never be able to plan your life AT ALL. I’m glad my stupid adhesive allergy means I can just have a nice steady regular 48-hour plan.

So tired. Went to bed at 5pm. It’s still only 6. Ugh.

1 comment » | Blog

Torstai

January 19th, 2023 — 7:44am

Well last night sucked. Writing this in the early morning because I know by noon I’ll be unable to form a sentence. My new medication pump (well I should say the remote) woke me up five times between midnight and 6am. To be accurate it didn’t technically wake me up each time because sometimes I hadn’t managed to fall back asleep yet but you know what I mean.

  • Occlusion (unlikely)
  • Pump battery low (bs, it had 50% still)
  • Move pump closer to infusion site (total bs)
  • Occlusion (unlikely)
  • Move pump closer to infusion site (bs again)

So yeah. Not a happy camper, here. After the first two alarms I turned off all my Bluetooth stuff again in case there was interference but it obviously made no difference. SIGH.

Perhaps I’m doomed to never get a solid night of sleep again. We’ll see what Nurse Sarah has to say. I sent screenshots of each alarm so we have a paper trail of fail.

Also my dose of Remodulin is slightly higher now because of math so it’s affecting my stomach and causing more headaches. That’s temporary but not fun on top of poor sleep.

Gahhhhhh.

Maybe I’ll rewatch the third season of Succession today. Or restart Breaking Bad. I dunno. I’ll probably just listen to my podcasts all day with my eyes closed. Started a good one last night: The Teacher’s Pet

Season 5 of Something Was Wrong was a mixed bag. The first half of the season was a bit dull and I ended up skipping some episodes but then the second half — Rachel’s story — was gripping: growing up in a culty “church” with abusive parents. Started season six last night. A good catfishing story and a super-scary weirdo-predator story. Yikes.

Also yesterday I knit a few more inches of Henry’s sweater, stitched a few more circles on my blackwork sampler (got all the yellow out of the way as I knew it would be annoying to stitch yellow designs on white canvas), and started watching Fake or Fortune on the iPlayer. Oh, I also caught up on Happy Valley. Damn it’s a fine show!

Em, Chloe, and Mom all received their Christmas presents and seemed very happy. Em FaceTimed me and was so sweet and enthusiastic about everything I sent — handmade rainbow joggers, three bottles of sparkly nail polish, and the YA edition of Radium Girls. She told me with great pride that she could guess that a book about girls who glowed in the dark would be about radiation and said she couldn’t wait to start reading. *whew* I wasn’t sure if she’d graduated from her beloved Pete the Cat books yet but I took a chance. Lol.

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Keskiviikko

January 18th, 2023 — 7:25pm

Rough night. Tired day. Tomorrow will be better.

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Tiistai

January 17th, 2023 — 7:15pm

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.

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Maanantai

January 16th, 2023 — 8:04pm

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.

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Sunnuntai

January 15th, 2023 — 8:53pm

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.

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Lauantai

January 14th, 2023 — 8:14pm

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.

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Perjantai

January 13th, 2023 — 7:40pm

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.

1 comment » | Blog

Torstai

January 12th, 2023 — 9:03pm

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.

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Keskiviikko

January 11th, 2023 — 5:22pm

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.

1 comment » | Blog

Tiistai

January 10th, 2023 — 5:44pm

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.

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Maanantai

January 9th, 2023 — 5:38pm

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.

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Sunnuntai

January 8th, 2023 — 6:26pm

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…

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