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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!

A better day. Got plenty of sleep, and stayed in bed resting until Henry and co. showed up around noon. Oh man they are good to me. They decluttered and tidied, did laundry, took out trash and put the bins out. Henry picked up my prescriptions, returned my library books, and got burritos for all. He also used the tabbouli ingredients that I bought the day before my ER trip and my recipe to make me a lovely big vat of refreshing, easy-to-eat tabbouli. Lulu ran around and caused joyful sparkling creative chaos. Freyja is an expert crawler and puller-up and is a solid chunk of personality. She roars, in a conversational way, all the time. She waves. She grins. She wants desperately to walk! It’ll be very soon now and she’s only 8 months old.

No trampolining for Lu today cause it was alternating rain and hail!

I felt so blue last night that I called Chloe, just to cry on her shoulder through the ether. It really really helped. She knows how to listen and is such a comfort. We always call and cry on each other when we need to. We’re the best, closest cousins ever. <3

Home again. Let’s hope I can go more than a week without another ER visit. too tired and headachey to write much. It was same old same old — probably SVT (my suggestion and pulmonologist agreed) but the ER doc didn’t diagnose properly and made things worse. Beyond exhausted and seriously fed up with living inside a booby-trapped body.

Oh forgot to say last Wednesday at cardiologist they stuck a cool little heart monitor called a Zio Patch to my chest. It records my cardiac activity and I’m supposed to wear it for two weeks.

Can you guess where this story is going?

Remember my good ol’ adhesive allergy?

By the very same evening my skin was already burning. I put up with the pain (and good thing I did, because it will have recorded my entire cardiac episode on Thursday) and left it in place till I got home from hospital today. Three whole days. I could no longer tolerate the intense pain. Ripped it off. God. My skin looks like I’ve had a tragic chemical burn. It’s bright red and puffy and throbbing and burning.

Good times.

Still in ICU but stable and comfy. Too tired and headachy to write more for now, but please know that I’m safe and recovering and might get to go home tomorrow. Xxx

ER again. Same thing