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.
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!
Jesus the fatigue is real. What is going on?? Had to spend the afternoon napping again. I did manage to take an outdoor very slow walk for six whole minutes without resting in the middle so that’s something.
Took a bath this morning and then made really amazing soup for breakfast and lunch. Based it on a chicken soup recipe but I didn’t want actual chicken in it so I altered it quite a bit. It’s really kind of neat that Dave and I each cook for ourselves most of the time, because I can make small batches of experimental recipes and not worry about anyone else’s likes and dislikes.
Kara’s Noodle Soup
Makes two very hearty servings
Put 5 cups of chicken broth in a saucepan.
Add 2 peeled and sliced carrots, a few inches of sliced leek or celery, and a spoonful of grated ginger (keep your ginger root in the freezer and grate it frozen. No need to peel)
Bring to a boil, then turn the heat to low and simmer while you make noodles:
Mix a pinch of salt with a cup of flour. Mix in an egg, then add a spoonful of milk at a time and knead well to make a very stiff, smooth dough. Let rest ten minutes, then roll out 1/8 thick with lots of flour and slice into noodles. Drop noodles a few at a time into the soup and simmer for ten minutes.
Mix a spoonful of cornstarch with a little water to the consistency of cream and add to your simmering soup until the broth is the thickness you like. Done!
No alarms last night, which is good, but why not? Lol. I used the same fresh thigh site as the previous night.
Hypervigilant all night, and there was much snoring but I was too tired to switch rooms so I’m feeling kinda crummy. Gonna have a bath this morning so that will probably perk me up.
It has been below freezing every night and not much higher in the daytime, but dry dry dry so no snow. Phooey.
Today I might finish my 100 circles sampler. There are only 6 remaining!
Nurse Sarah has a theory that maybe there’s not enough subcutaneous fat on my thighs, where I have my sub-q sites, and it’s confusing the pump. It’s not a terrible theory… but why is it a problem only at night?
She says I should be able to “pinch an inch” of fat and skin, and suggested starting a site on my abdomen. However, I have no more than 5/8” of pinchable fat anywhere on my abdomen. The absolute thickest fat I have (and it’s still not an inch) is on my thighs, which is the spot I use. I suggested switching to an infusion set that jams the needle in at an angle, so we can try to keep the catheter in the fat layer. She’s gonna order some of those for me. She has still not heard back from the manufacturer about this problem.
So tired and kinda low. Big fatigue and lots of pain today. I skipped my exercises but I did bundle up and go outside for a very slow, short walk. Was out there for 6 1/2 minutes but had to take a rest twice so maybe five minutes of actual walking?
Ate lots. Blintz for breakfast, salad and refried beans and cheese for lunch, the rest of my cottage pie for dinner, and I’m about to go get another dish of beans and cheese and tomatoes for a bedtime snack.
Had a Remunuty alarm last night, the totally false one. (“move pump closer to infusion site”) But at least there was only one, and it happened at 11pm when I’d only been asleep for an hour so it didn’t destroy me.
I guess this is my life now. But if it’s only once per night I can deal with it.
Hoo boy it was sunny today but so cold! I did most of my exercises and took a 4 1/2 minute walk and thought my nose would freeze. And the wind nearly knocked me down!
Three good meals plus snacks today. Oatmeal for breakfast, half-size homemade BLT for lunch (Dave bought low-salt bacon which was good, and he cooked it soft and floppy the way we both like it), and a big portion of my cottage pie for dinner. Hazelnuts, choc chip cookies, and cheese for snacks. Yay me!
And I was able to stay up, in the living room, till 8:30pm! We watched tonight’s episode of the Pottery Throwdown and Dave rubbed my feet. *heart eyes* Maybe I can get my sleep schedule back to normal soon.
Kara’s Mini Veggie Cottage Pie
Start a few potatoes boiling for the mash.
In a small cast iron skillet, saute half a medium onion and whatever veggies you have handy, diced. I’ve used carrots, celery, beets, leeks, green beans, cabbage, peppers, and frozen peas. The peas are a constant — I don’t think it would be right without them — but everything else varies. If all you have is peas and an onion, go for it. I don’t think you can go wrong as long as you have peas!
Get your little skillet nearly full of veggies (they’ll cook down) and add about half a cup of water or broth. I use “Better Than Boullion” beef broth. Add some herbs and a little salt. Turn the heat down, cover, and cook till the veggies are tender but not mushy. Then mix a spoonful of flour with enough water to make a slurry and stir it in to the veggies to thicken the gravy. When thickened, turn off the heat.
Meanwhile keep an eye on the potatoes and, when tender, mash them with LOTS of butter, cream/milk, and cheddar cheese. I dice the cheese instead of grating it. So much easier.
Then dollop the mash over the veggies, stick the skillet into the oven on a tray in case it bubbles over, and broil until the potatoes get golden brown peaks. YUM!
No alarms last night! Current hypothesis: the CPAP’s RF interference was the main problem, and the Saturday night alarm was a genuine occlusion alarm, which occurred because I was using a scarred old infusion site. Now I’ve begun starting two separate infusion sites. A comfy old scarred one for daytime and a painful new one for night. Why is the scarring only a problem at night? Gravity? Or the fact that I sleep without moving very much? I’m careful not to sleep on the side that has the current site. Oh well, the “why” doesn’t matter much I guess, as long as I can SLEEP.
My sleep, since I’m still hypervigilant, is not stellar, but it’s tolerable and should get better if I’ve actually solved the False Alarm Problem.
The new thing I’m freaked out about is how low my oxygen saturation is. It got very low while I was sick and coughing for a month, and then my pulse oximeter died so I couldn’t test for a few weeks. Just got a new one and… oh dear. I don’t FEEL like I’m in the low-to-mid 80s at rest, but that’s what it says. And dropping to mid 70s when I walk from room to room. Tested Dave and he was high 90s, as he should be, so it’s not malfunctioning equipment.
So… I think I need to do my stupid boring little exercises regularly even though it’s scary. And I need to take stupid short slow little walks. That should strengthen my heart a little, maybe? I did three of my exercises yesterday and took a three-minute walk out in the fresh air. Will try very hard to do the same today.
I weigh 105 again and my face is nice and round! I cooked a beautiful little veggie cottage pie again yesterday and ate half. This one was super colorful because I used purple onion, yellow beets, orange carrots, green peas, and white leeks. It was so pretty! And also delicious.
I’ll write up my recipe and post it separately…
Wrapped the thing snugly in tinfoil to protect from stray RF. Switched to sleeping in guest room at 2am because of Snoring Championship.
Beep beep beep at 5am
Although the damn thing woke me up again last night, I’m not in despair. I feel like we’re on the right track. I think the RF from Dave’s CPAP was part of the problem for sure, because the situation has been much better since we eliminated that factor. Here are two possible explanations for last night’s alarm.
1) Another zap of rogue RF. Dave says it could be the telco running high-powered tests in the middle of the night, or a neighbor doing something weird, or a cop car cruising past with a high-powered radio, or something like that, that for some reason penetrates the bedroom but not the guest room.
2) The alarm I got was one that I imagine could, maybe, have been legitimately caused by my scar tissue. This seems very unlikely, because what’s special about 4am when the thing had been working fine for 36 hours already? But it’s not entirely impossible.
Or it could also be options one and two at the same time.
So I have some choices. I could sleep in the guest room again and see if I ever get an alarm in there. The drawback: for how long? Or, I could start another new infusion site far away from any scar tissue. The drawback: intense pain and poor data.
However! Dave has some RF-shielding fabric with which I could sew a little protective pouch. Putting the pump and remote in there would eliminate any RF interference for sure. If I got an alarm, I’d know it was either a legit alarm or faulty equipment. Dave can’t find his RF fabric today (his workshop needs to be seen to be believed) so I’m just gonna wrap everything in tinfoil tonight. Lol. Low-tech.
Took a bath this morning, nice and clean. Went to two grocery stores for a few special Kara things — my fancy high-fat cottage cheese, raw unsalted hazelnuts, green apples — and to restock the baking supplies. Jesus H Christ prices have risen since the last time I shopped (before Christmas). My cottage cheese is $7.50 per tub. I think it was $5.50 last time. Five pounds of the good King Arthur flour? $8. So I got Gold Medal at $5. Ghiradelli chocolate chips? $8 for an 11.5 oz bag. (Notice how they’re not 12 oz bags anymore? You don’t get the full 2 cups you used to) So I bought store brand for $4.50. Saw a lot of other stuff I might normally buy, juice, tortillas, but not at those prices, buddy. I don’t NEED juice and I can make tortillas.
I also bought a 5lb sack of black beans ($7.50! Seriously!) for Henry so they can make hearty nutritious soup in the week before payday and they won’t starve.
Cross your fingers for tonight’s tinfoil experiment. The best outcome is proof of RF interference. I’m 98% certain that’s what it is (if not legit alarms).
(P.s. I know it’s not tinfoil, it’s aluminum foil. But tinfoil is more fun to say and quicker to type.)
5:30am. False pump alarm at 3:55. Still awake.
Just book me a room at the madhouse
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!
Update February 13 This post was incorrect. Removing Dave’s CPAP machine did NOT solve the problem of recurring false alarms from my Remunity pump. Further experimentation, however, did lead me to a solution: put a 100% freshly-charged battery into the pump every night before bed, or every 24 hours, if you’re not on a regular schedule like I am. (I put in a fresh cartridge every 48 hours) See this Post From The Future for more details: http://kayray.org/2023/02/12/sunday-46/
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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!
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.
