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I think the doubled dose of mirtazapine is helping. I wouldn’t say my appetite is back, but I can think about food and eat a bit at appropriate times without feeling disgusted. Perhaps it’s helped my mood, as well. I felt positively cheerful today. I weighed 101 lbs this morning! Never got lower than 98, and maybe it’ll turn around now. I miss my round face. I look haggard when I’m this thin.

Dave had his booster shot scheduled for 1:30 today, and I had happened to notice, while browsing Portland restaurants, a German restaurant called Gustav’s near his Kaiser compound, so I drove him to his appointment and we had a lunch date afterwards! I even wore a frock, the blue flowered one I made over a decade ago. Good lunch. I ordered side dishes (the red cabbage was the best) and Dave had a cabbage roll, a bratwurst, and about a gallon of excellent German beer. He got a bit tipsy. Adorable.

We were both wiped out when we got home, so sat on our comfy couch and watched Netflix and Hulu and such till it felt like bedtime. It was 7:45. We’re old. Lol.

And now I’ll read till I feel sleepy. I’m working my way through the Miss Read novels again.

This Henry Clan came over early so I could take the Honda (which will be theirs as soon as I can jusp through all the hoops) to the DMV to get it registered in Oregon. Fast and easy, with an appointment, and I even had all the correct paperwork with me. They gave me new plates and stickers, and will mail my new title.

On the way home I stopped at TJ‘s to get milk for my Englishman’s tea, and blueberries for Lulu and me to share. So good!

Then I was completely exhausted and had to lie down for the rest of the day.

Today I had my ophthalmologist appointment, which is necessary because I’m on heart meds (amiodarone) that can mess up your vision. Doc said I’m good, just the very beginnings of cataracts but that’s normal. And he gave me a new glasses prescription which makes me very happy because my former prescription was Never Right. I’ve already ordered new glasses — same frames as last time because I love my red cat-eye frames!

Oh! Yesterday I got my iPad connected to my DNS proxy so we can watch BBC even though my laptop is in the shop. Thank goodness. We watched the first ep of the new season of Great British Sewing Bee. Such a joyous show. Tonight I plan to watch Lucy Worsley’s show about the restoration of Notre Dame.

Also! The OHSU endocrinology department contacted me and booked me in for next Thursday! I’m THRILLED. My pulmonologist threw his weight around and got them to give me an urgent appointment. Maybe there’s hope that we can solve my multiple horrible new issues.

We have a new Smart Ceiling Fan… which randomly turns itself on. Lol. “Smart” appliances definitely got the wrong name. It was a nightmare for Dave to install, too. Very poorly designed.

Zero energy but felt ok otherwise. Didn’t do much… knitted a sock and listened to audiobooks, mostly. Oh! Tonight I put on the first ep of Russian Doll to see if it was Dave’s kind of thing. I figured it’s a win-win! If he’s not into it, I can go ahead into season 2 without him, and if he likes it I get to watch season one (my third time) with him!

He likes it so far! I figure one more ep will be the decider.

The concrete people finished the epoxy (?) flooring in the workshop today. Now it needs to dry till the weekend, and THEN Dave can start setting up,

Cheerful today! And I think maybe the extra Remeron (7.5mg up from 3.75) is having the desired effect because I noticed myself thinking about food this evening, and desirous of lasagna! Got grubhub to deliver some tasty Italian food from Love Verona tonight and ate about a third of a serving yay! Got plenty extra for the freezer, as long as I was paying for delivery anyway.

Boy do I get winded fast though. Ever since the hospital I get out of breath just walking from room to room. I need to remember to move very slowly.

The workers from Webfoot Concrete Coatings cane this morning to start resurfacing Dave’s workshop floor! He’s getting one of those nice epoxy (or something) coatings put on. Super exciting! Can’t wait for him to finally have a real workshop set up again.

I scraped up enough energy to drop my laptop at the Apple Store for servicing (one USB port died and the other is unreliable). When I got home the Henry family was here so we got to hang out for hours. Beautiful sunny Spring day, too.

Dave and I love to watch property shows (e.g. Escape to the Country) and shout at the people for choosing the worst house :D

Not great sleep (poor Dave’s CPAP mask had issues and he snored like a walrus) but I felt less depressed anyway. I potted two zucchinis and three pole bean seedlings! I keep my shower chair on the deck in my “garden” so I can sit comfortably while filling growbags with soil etc. Can’t do much at a time, but doing a little bit when I feel well enough is working nicely; I have a pot of sunflowers, a pot of zucchini, a pot of pole beans, and a pot in which I sowed a lot of spinach but only three have germinated. The “seed library” seeds don’t germinate well, so when I’m up to it I’ll go buy some fresh seed packets.

Henry, Jayla, and co came over to visit in the afternoon! My goodness they’re a lovely family. They treat their daughters (and each other) with so much love and respect. Just wonderful to see. Lulu wanted a snack so Henry found grapes, three kinds of berries, and cherry tomatoes in the fridge and we grazed on them together. Fruit is one of the only foods I find appetizing.

After they went home I was looking at stuff on the internet, as one does, and I saw a picture of lasagna that looked appetizing, so Dave heated up a frozen Trader Joe’s lasagna and I ate two tiny helpings!

Today is better. Got enough sleep. Not crying. Took a shower. I feel weak, shaky, and headachy but maybe consuming some calories will help that. I just need to think of something that seems appetizing and won’t nauseate me. I’ll start with an Ensure (only 150 calories but lots of nutrients) and then maybe I’ll see if an apple sounds good, with goat cheese if my stomach doesn’t mind too much.

And I think I’ll start working on the second Gardener Sock, if my headache will allow it. Feeling good enough to knit is nice. Finished the first sock a few days ago. Will post pics when I get around to it…

There’s a Downy Woodpecker at my suet feeder! They’re darling. Small, floofy, beautiful black and white patterned feathers, and the male has a tiny bright-red cap on the back of his head, like a yarmulke. Adorable.

Another rough day. Thank goodness I have Dave to care for me and Lily Bear to absorb my tears.

Bad insomnia last night. Exhausted. Depressed. Worried about my brand-new health mystery. So skinny. Never hungry. In pain. Itching from adhesives. (Tried new super-hypoallergenic bamboo bandages recommended by a reader — and they make me itch. Intensely frustrating) Restless Leg Syndrome is torturing me.

Miserable. Basically just lying in bed and crying today. I feel so hopeless.

Slept late thank goodness, after last night’s puking funtimes, and then at 11:00 Nurse Adam from the Signature palliative care organization came over for our first meeting. It went great! He will help me coordinate all my complicated care, and he really really listened.

I’m down to 99.4 pounds this morning. Adam will help me make the docs figure out wtf is going on. I’ve sent messages to them all, begging for help. My most recent thyroid function tests came back last week but no one has contacted me! My results are really odd — very high T4 and TSH, very low T3. So I’m hyper- and hypo-thyroid at the same time. Because of course I am.

Ah! My pulmonologist just called re: my thyroid levels. He says it’s very very strange and he doesn’t know what to do, so he is going to try to get me an urgent endocrine appointment (the soonest I could get an appointment was end of June). So that will be helpful.

Middle of the night, stomach unhappy, hanging out in the bathroom.

Still alive. Resting, knitting, watching Baumgartner Fine Art Restoration on YouTube.

Today was much better. I got out of bed and sat on the couch instead! I knitted and watched Harvey (1950) and a new based-on-true-crine mini on ITV called The Thief, His Wife, and a Canoe. Nowhere near as good as The Landscapers but still a very pleasant way to spend an afternoon.

Food: lots of grape juice, an Ensure, about 1/3 burrito, a helping of tabbouli, and a tiny portion of steak and mashed potatoes that Dave made for dinner. Some calories and some good nutrition.

Suffering. Grateful for my cozy bed, my comfy house, and my adorable man. I’ll get through this.

I ate several things today: an Ensure, two small dishes of tabbouli, two small dishes of ice cream, and some grapes!

My doc gave me the ok to start raising my treprostinil (remodulin) dose, so I cranked my pump up from .032 to .034 ml/hr and the side effects are hitting hard. Headache, nausea, and facial flushing. That’s ok — my body will get used to it and I should feel a lot better someday.

Stayed in bed all day again, but my mood is better.

Excellent pulmonologist visit today! Dr Robinson is wonderful. He really listened to me, and he told me about some great new PAH drugs that are in clinical trials. And he’s gonna help me figure out my weight loss. And he’s letting me increase my remodulin dose! And he gave me his personal cell number to give to the ER docs next time I have an emergency so they’ll be able to give me appropriate care.

I stopped at New Seasons on the way home and had them make me a veggie, avo, and cheese sandwich with ALL the veggies on it. I swear it was three inches thick. I ate half when I got home, and the other half just now before bed. Plus I drank an Ensure this morning and had a little dish of ice cream. Not enough calories but a lot better than nothing.

Oh my god it’s good to have Dave home again.

He volunteered to drive me to my doc appointment today. So sweet. I’m still feeling extremely fragile so I took him up on it.

The appointment was with my PCP, Dr. Chen. He’s kind and warm, but of course my condition is WAY out of his league so there’s not much he can do for me. But it’s good to check in. He says my lungs still sound a bit wet but to give it time. He also prescribed a ateroid inhaler to help with my wheezing.

Still depressed. Not terrible, just gray.

Today I ate: an Ensure nutrition drink, two helpings of homemade tabbouleh, and some grapes.

I still have the Big Fatigue so I pretty much stayed in bed all day. Made some good progress on the sock I’m knitting. Depressed too. Chronic illness is the worst, man.

101 pounds thus morning. Yikes. Managed to eat a whole burrito and some grapes.

Dave is home!!! He arrived at 4:30am so we are wiped out. Thank goodness he got home safely!