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Oof. Hot. 100°.

Whew it was a scorcher! I sat outside in my garden for as long as I could before it got too hot, and then I came in and traced off my mid-Victorian doll clothes patterns again with adjustments this time so they’ll fit better.

Tomorrow will be hotter, maybe 100°, but next week should be lovely — high 70s, low 80s.

We started watching “The 1900 House” on Channel4.com. It’s terrific!

Another glorious day in Paradise. I ripped out my ailing pea plants and sat out in my garden in the sunshine in the morning, listening to the birds and insects making a happy racket.

Then I ran to Ace for a hose, a little bag of potting soil, and some more green bean seeds. Home again, I started several little pots of green bean and nasturtium seeds. Mom mailed the nasturtium seeds to me, collected from her own nasturtiums which are the descendants of my nasturtiums from decades ago.

He’s home, he’s home, he’s home!!!

Oh what an absolutely glorious day! A real summer day. Eighty degrees, puffy clouds in a bright blue sky, warm gentle breezes. In the morning I played in my garden. Planted my new strawberry, cucumber, and green bean seedlings, and started a couple of sprouted potatoes too. And then I sat in the shade on the deck in the middle of my plants and just enjoyed the day.

Then I went to Trader Joe’s for apples and goat cheese (my staples), and salsa and chips, and a whole bunch of beautiful fruit. And now I’m just chilling and enjoying the fresh, warm air blowing in through my bedroom windows. Gonna watch the new episode of Sewing Bee now. Dave is still in the hospital — they want to monitor his kidneys. Eight days he’s been in there, argh!

Susan (hi Susan!) got Henry and me hooked on Redactle. So much infuriating fun, especially when we all work on it at the same time!

When Dave is home I can fall back asleep if I wake up too early. When he’s away, I can’t. So yeah. Permanently tired. I visited him again and he looks/sounds great! He’s hoping to come home tomorrow, fingers crossed.

On the way home I stopped at our little local nursery (plants in a parking lot) and bought some more seedlings — strawberries, green beans and cukes. Also a potted fern.

Got home in time for appointment with Gas Man #3, who needed a closer look at all our Issues before writing up a proposal. Sounds like he has a good plan. I hope the estimate is reasonable. We’ve been without hot water for a whole week! Tomorrow I plan to heat some water in the electric kettle and have a bit of a wash, and I can wash my hair in cold water in the kitchen sink, if the weather stays lovely and warm. Summer has finally arrived.

My sweetie had his foot operation today and it went fine. Plenty of healthy tissue under the bad bits. *whew* He says he’s feeling much better, almost back to normal, so we hope he can come home soon.

The Henry family visited today! Such joy they bring me. Smol Baby is developing strawberry-blonde curls! Maybe she’ll end up with glorious , reddish, wavy hair like mine.

Watching excellent BBC crime deama, Sherwood, and up way past my bedtime. Oops.

Super nauseated so this will be quick. Had enough energy today to do a little housework and visit Dave in the hospital for a couple hours! I read to him <3 He’s doing well, just feeling icky from antibiotics. Surgery tomorrow to clean up his foot wound.

I managed to do a few things today. I set up my new vermicompost system (wormbucket.com) and went to Portland Nursery, which is absolutely Disneyland for gardeners. My god, it goes on and on and on. Houseplants and gardening gear, of course, but also row after row of every imaginable flower, groundcover, shrub, vegetable, fruit tree, berry bush, rose bush, etc etc etc. I ran out of energy before walking through it all! I was very restrained and bought only my worms, two tiny houseplants (Crispy Wave ferns), and an envelope of mixed good-insect-attracting flower seeds, which I strewed over the lawn where a big patch of buttercups has grown during No Mow May. Hoping some of them will take. We had a gentle rain later so I’m hopeful.

Oh I also stopped at Ace for tomato cages because they cost half as much as at the nursery (sorry but $20/cage is too much!)

Then I caged my tomatoes and my zucchini, and filled another grow-bag with soil to plant something in later. Not sure what. My peas look really wimpy so maybe I’ll rip them out and try again. I have a packet of carrot seeds too.

And THEN I worked on Em’s birthday dress and made great progress! Can probably finish tomorrow if I have the stamina.

And then around 5pm I’d had enough and crawled into bed.

Dave had an angiogram on his leg today and they fixed his circulation issues! Hooray! We had a quick phone call but the connection was terrible and I could only understand about half of what he said (come on boomer, get comfy with texting) but he sounded great (if exhausted). He’s hoping to come home soon — if not tomorrow, maybe Monday. Oh man I hope so.

The house is so quiet and dull without his cheerful chatter. Hurry home sweet Dave <3

Dave is still in the hospital but he’s feeling a lot better. He’s still on heavy-duty IV antibiotics but his white blood count is almost back to normal. *whew*. Tomorrow he gets an angiogram on his leg. We had a good long phonecall tonight and he sounds like his usual self again. I hadn’t realized how very confused and mumbly he had become — it was so gradual. Sepsis is NO JOKE.

I had the Big Fatigue again today so I pretty much stayed in bed, but I did get up and go to New Seasons for a couple of sandwiches so I have tempting food for the weekend. Got some really nice-looking sliced sourdough for toast, too, and some lemons to make lemon curd.

Dave didn’t have a stroke and he doesn’t have a DVT so that’s good. He does have sepsis and a handful of other things so they ran tests on him all day. He’ll be there for a few more days probably. He’s miserable. Poor chap. :(

I visited Henry’s family this morning and stayed till the afternoon. It was wonderful to see them — it has been forever because of their bout of Covid.

When I got home I climbed into bed and watched Taskmaster for the rest of the day!

Well today was QUITE a day!

Up early to go to the OHSU medical center for a chest echo and labs. Labs came back showing all my thyroid levels to be nearly off the charts, so maybe they will finally believe me that this is all a thyroid problem and actually do something about it.

When I got home poor Dave was dragging around looking weak and sick, poor fellow. I’ve been smelling gas on and off since we moved in so I checked the symptoms of natural gas poisoning and they matched him pretty well, so I finally convinced him to call the gas company about it. They sent a guy out within half an hour who found multiple gas leaks all through our house. Like, every coupling is leaking. Argh. The Gas Man said it’s harmless to breathe… but I dunno if I believe that. He turned off the mains and we have a company scheduled for next week to come fix it all.

Meanwhile Dave was dizzy and weak and wobbly and headachy and numb and nauseated and body achy and all… so (again) I finally convinced him to call the Kaiser nurse. He went over all his symptoms and she said go to the ER, so I took him in. As we were driving and going over his symptoms again he realized that it was all matching how he felt when he had bouts of DVT (deep vein thrombosis), and when we got there and they examined him they noticed that a wound on his ankle was looking infected too. (He’s diabetic and often has wounds that take forever to heal) I hung out with him in his ER cubicle until I got tired and came home. He’s there overnight, thank goodness, where they can take good care of him.

Why won’t men take care of their health *before* it’s an emergency? He has been suffering for a week or ten days and I’ve been begging him to see a doctor! They x-rayed and CT scanned him and gave him antibiotics and I don’t know what else happened after I left.

Tell you what, though, it was refreshing to be in an ER and not be the patient! This is only his second ER visit since we met, but I’ve had four. But who’s counting? Heheh.

Yay I don’t have a pituitary tumor. Endocrinologist says it’s probably the amiodarone messing up my thyroid, so they’ll give me more of one hormone and less of another and try to balance me out.

Which is, of course, exactly what I asked them to do three months ago. *eyeroll*

Em’s birthday sundress was becoming an Epic Headache (size and fabric) so I ran to the fabric store and bought some sturdier, less difficult fabric and will re-kajigger the size tomorrow maybe. Oh except tomorrow I have a chest echo at 8:30am so that’ll probably be all I can do!

Dave hasn’t been feeling well for several days. Achy, massive fatigue, lightheaded. Covid test was negative but I’ll give him one tomorrow as well. My poor Englishman. :(

One year ago today, I went on a date with an Englishman, and he turned out to be the man of my dreams. We’ve had one whole year of peaceful contentment together, and we’re trying hard to stay alive for many more. I love you, Dave Fifield <3 <3 <3

We both feel like we didn’t sleep at all last night. Did nothing, accomplished nothing.

I finally decided what to make Em for her 9th birthday next week: I’ll draft a version of this tiered maxi sundress in her size: https://oliverands.com/community/blog/2016/06/tiered-maxi-dress.html . So i went to Mill End and bought three yards of the most luscious, lightweight, floaty cotton in a beautiful understated floral print. Maybe tomorrow I can draft the pattern and get started.

So. You know how I was all excited to get the tiny new “Remunity” pump for my Remodulin? The manufacturer, United Theraputics, promotes it as being super-convenient, easy, worry-free, etc. They are LIARS. Liars, liars, liars. Greedy liars.

The pharmacy nurse called today to set up an appointment to train me on the new system. And multiple appointments into the future before I’d be allowed to use it… which seemed odd for something “simple”. She showed up, we got started and within ten minutes I told her NOPE this isn’t going to work for me, let’s call it a day.

The problems are manifold. First, for some reason the little pre-filled medication cartridges need to be refrigerated, though it’s the very same shelf-stable medication I use in my old-style CADD MS-3 pump. Which means, no trips without bringing a cooler along. *eyeroll*

Second, they only ship ONE WEEK of medication at a time. So, every week I’d need to sit on hold with my specialty pharmacy to re-order, and then worry that UPS will have a delay and I won’t get my meds on time (which happens a lot more often than it should) and be home all day to take delivery… It might not sound like a big deal, but my stupid medication already uses up enough of my bandwidth and I don’t want to be forced to think about my horrible disease more than necessary.

And what if we went out of town? They’d need to ship to my hotel? Yeah I can’t see any problems there.

Third, the pump has no display and it DOESN’T KNOW HOW MUCH MEDICATION IT HAS IN IT. Read that again. So I would need to hope that it wouldn’t run out in the middle of the night and wake me up.

Fourth, if for some reason my medication cartridges aren’t delivered on time, I’d need to manually fill an empty cartridge, which isn’t a huge problem except that I’m not allowed to do so without first sitting on hold with the pharmacy and getting the OK from them. Please.

There’s more nonsense but those are the main issues. After I told Nurse Shelley that I was calling a halt to the whole thing, she said she totally understood and that only 25% of patients who try this new pump are happy to stick with it. That’s a pretty lousy rate, United Theraputics. Do better.

So, it’s the ol’ CADD MS-3 pump for me — which is no longer being manufactured so they just keep recycling refurbs, which I’m sure is why I’m having ever more problems with my pumps. I’m needing to swap them for “new” ones every couple months because they keep failing for one reason or another. Shelley says United Theraputics is designing a new pump to replace it, but of course they’re a goddamned greedy pharmaceutical company and they’ll only allow it to be used with name-brand Remodulin while my insurance co will only pay for the generic treprostinil.

Oh, yeah, the Remunity pump “needs” name-brand Remodulin, not the generic. Kinda funny how they released it just after the generic came out. What a coincidence, and what a convenient way to force ppl to buy the name-brand drug. At least the 25% of patients who stick with it lol.

Oh well. So be it. *shrug*

Monday and Tuesday went by so slowly, but Wednesday and Thursday absolutely flew past. Weird.

I finished the little dress! Here she is in her full outfit.

So many teeny tiny seams and hems!

Nurse Adam from my palliative care team came over for a visit today. He’s working on getting me some oxygen tanks to use if we have a power outage. He always checks to make sure my docs are following up and doing what they say they will. Such a kind fellow.

Chloe told me about an online pharmacy that sells drugs at a reasonable price (15% above cost) so I’m working on getting them to supply the drugs that my insurance company won’t cover (my rosacea cream and an allergy med that is VITAL). Seems totally legit so I’m really excited. They are CostPlusDrugs.com . Founded by Mark Cuban, billionaire who apparently has a heart and isn’t merely playing space tourist.

I finished the bodice of Doll’s first proper dress. The tiniest, fiddliest pieces you can imagine, all sewn by hand with teeny tiny seams. So much FUN. I think I will need to make a duplicate doll for myself so I can continue making clothes for Lulu’s doll after her birthday (need to custom fit everything).

Watm and Springy today. Very proud of myself for taking a small walk in the morning.

I re-drafted the bonnet pattern and made one that fits properly, though while sewing it together I thought of a way to improve the pattern even more for next time. As promised here are pics! She’s in her full set of underclothes: drawers, chemise, and petticoat.

This one shows the 1/8” tucks on her drawers. So tiny!

And here she is in her sun bonnet. I’ve cut pieces for a dress from the same scrap of ultrafine Liberty print cotton, a donation from one of my mom’s friends. I can’t afford Liberty prints! Although doll clothes are so tiny I could buy the odd 1/4 yard now and then :D

Super tired tonight but in a good way.