Category: Blog


Chloe!

July 7th, 2021 — 6:56pm

Chloe is here! She’s my favorite cousin and dear friend. She has the week off work so she flew up for a short visit. YAY!

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Sleepy

July 6th, 2021 — 6:32pm

Still recovering from the 4th. I managed to go to Trader Joe’s for groceries this morning but I forgot to buy goat cheese! So I rested for a bit and then went back out to Sprouts. Their goat cheese logs are smaller and more expensive, but a lot creamier so it’s all good.

The word “their” is looking really strange to me. Is that how you spell it? Their their their. I guess so but it doesn’t even look like English.

So anyway! Played some WoW, finished a library audiobook (Notes on a Silencing by Lacy Crawford), watched some Taskmaster. Now it’s 6:30 and not long till bedtime yay!

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Oof

July 5th, 2021 — 7:03pm

Wiped out. Did nothing all day.

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Boom!

July 4th, 2021 — 8:19pm

It’s the Fourth of July! In our city we’re allowed to have small fireworks! And we have a bunch of friends over — maybe 20 people: K&M’s friends, Em’s friends, my wonderful boyfriend Dave. We’ve all been hanging out in the front yard for hours, waiting for it to get dark. Big barbecue feast, chat, margaritas mixed by Bunny Bill the Bartender. The kids are running around shrieking and playing with sparklers. It’s after 8 so it’ll be dark enough for fireworks any minute now! BOOM!

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Tired

July 3rd, 2021 — 8:52pm

Tired and headachey today. Took my little walk and made cauliflower cheese in the morning, watched a couple of murder shows, played Words With Friends with DF all day <3

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Words With Friends

July 2nd, 2021 — 9:50pm

I reinstalled Words With Friends (classic) to play with DF. So much fun! But wow, it has changed a lot since we all started playing in 2009. Remember that? It was so popular that the servers were constantly overloaded. I guess I bought it back then because it’s not shoving ads in my face after every turn like it does for DF. So many ads. So many OFFERS.

Ah well. Gameplay is still the same and still tons of fun!

Reminded me of We Rule, another early and incredibly popular iPhone game that had a lot of issues. We played and played and played (when the servers were up). Pity that one hasn’t followed Words With Friends into the future.

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Discord again

July 1st, 2021 — 8:54pm

Oh MAN have I been having fun with Discord! Henry and I listen to music or podcasts together most mornings, and watch some youtube or whatever later on. He discovers wonderful things on YouTube to share with me — Baumgartner Restoration, of course — I’ve shared a couple of those videos here. Today we watched two from Technology Connections about how hurricane lamps work. Fascinating. Jenny Nicholson critiques pop culture in an intelligent and entertaining way. We watched her episode about possibly the worst book ever written: Trigger Warning. We were howling. Also watched her ep about The Greatest Showman, a movie I loathed. It’s easy to say something sucks but a lot harder to say exactly why it sucks!

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Medication malarky

June 30th, 2021 — 1:59pm

This morning I spent an hour on the phone with with Accredo, my specialty pharmacy, because my medication was supposed to arrive via UPS yesterday but didn’t show up.

When I called last week to schedule a refill, they told me a generic has just been released for my Remodulin. Fine. Then they said, oh you need new pumps for the generic. Um, ok… I asked some questions. They really didn’t want to answer, but I persisted. Turns out the “new” pumps are EXACTLY THE SAME as my old pumps. Seriously. Same make, model, everything. But get this:  the pumps originally provided to me are owned by United Theraputics, the manufacturer of name-brand Remodulin.  They will not allow their pumps to be used with generic medication.  No good reason — just pettiness. Probably to make it harder for people to switch from name brand to generic.

So Accredo sent me two “new” (identical to “old”) pumps, which did arrive yesterday. When I unpacked the box this morning and saw that there were no meds or other supplies, I called Accredo and after an hour of being passed from person to person on the phone, I was told that they won’t ship my medication refill until I return the “old” pumps.  They kept saying I “can’t” use the old pumps for the generic and that they’re not allowed to ship my meds until the “old” pumps are returned.  Which is most nonsensical bullshit I’ve ever HEARD. WTAFF. As far as they know, I only have meds through the weekend (I always lie about how much I have left for this very kind of insanity, so I’m actually ok till the middle of next week but they don’t know that so shhhhhhh)

They didn’t send name-brand Remodulin to me because, of course, insurance won’t pay now that there’s a generic. And it’s thousands and thousands and thousands of dollars a month.

Of course no one told me about this. No one told me I wouldn’t get my meds. No one called to say there was a problem. No one called to tell me it was urgent to return the “old” pumps.

They say they’ll COURIER my meds from LA up to me, and eat the cost of name-brand if the “old” pumps haven’t arrived in time (I’m sending them back today), and that I definitely won’t run out of meds. I will LITERALLY DIE if I run out of meds. (Which is why I lie about how much I have left, every time, because they can’t be trusted. This kind of thing happens all the time.)

Pardon my French but FUCKING HEALTHCARE IN THIS FUCKING DIRTBAG COUNTRY CAN GO TO STRAIGHT TO HELL.

OK, I’m better now. Lol. Have been listening to music with Henry and GreenMtnGirl in my Discord channel allllll day. Come join us!

https://discord.gg/ncvEDyTQ (link good for seven days, and the I’ll post a fresh one)

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Getting old and glad of it

June 28th, 2021 — 4:34pm

It’s nice to be older. I mean, besides the fact that getting older means I’m not dead! Lol.

I don’t put up with mistreatment from men anymore (and it only took 51 years *eyeroll*). I’m completely happy with my body, my hair, my face. My hair is wild and frizzy and luscious. I have a cute little belly that would have infuriated me when I was younger but now it indicates to me that I’m un-anxious enough to eat properly! I like who I am; I know what I want; I don’t care if everyone on earth likes me. I know how to take care of myself when I get depressed.

I love me. I hope you love you.

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VLC

June 27th, 2021 — 10:01pm

Bedtime yay! And that means it’s time for an old episode of The Great British Bake Off! I’ve recently figured out how to stream my media collection from its USB hard drive to my phone.

Media on hard drive. Hard drive plugged into my Raspberry Pi with the Kodi media software on it. Enable UPnP in Kodi. Install the VLC media player on phone. Use “network“ tab to connect to the Pi. Easy!

Play Bake Off every night :)

Lovely date with DF today. Tried a new Middle Eastern place and I had a kick-ass Greek salad.

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Phone

June 26th, 2021 — 9:42pm

I usually hate talking on the phone, but someone very dear to me needed company today after getting some difficult news, and we talked for four and a half hours! That’s gotta be a Kayray Record.

Man, my mood has been good lately. My life is so pleasant, and in spite of my appalling health conditions I’m doing really well. Very very proud of myself for not letting my physical difficulties drag me down.

Today — took a tiny walk, washed my hair (date with DF tomorrow!), knitted a sock while on the phone, played a little WoW. Goodnight!

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Today

June 25th, 2021 — 9:21pm

Today — woke up a bit too early but not while it was still dark, at least! Then Trader Joe’s and therapy with lovely Suzanne. Caught a few Pokémon while I was out. Listened to music and podcasts with Henry over Discord all day. Mom played Bach for me and Chloe over a 3-way FaceTime. I finished reading a really sweet and well-written rom-com, The Summer Job by Lizzy Dent. Ate two small salads. (No appetite lately) Tired now, gonna eat my apple and cheese and go to bed. Pleasant, basic day <3

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Ann Likes Red!

June 24th, 2021 — 11:00am

When I was a wee lass — two or three, probably — I loved Ann Likes Red, by Dorothy Z. Seymour. It’s a simple little story, but I love it because it’s about a little girl who knows what she likes, and the grown-ups don’t try to talk her out of her red outfit. “Ann likes red. Red red red!” became a catchphrase in our family!

Sorry about the audio quality. I forgot to turn off my oxygen concentrator. Oops. :)

Now I’ve typed the word “red” so often that it looks strange and meaningless. Isn’t it funny when that happens?

Oh — I bought this copy from abebooks.com for under $20. Abebooks is a treasure trove!

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Walks

June 23rd, 2021 — 10:30pm

I’ve been keeping up the habit of taking a little walk each morning for about a week now. Very proud of myself. Pokemon Go keeps track of how far i walk, and it says I’ve walked 4km in the last week!

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discord

June 22nd, 2021 — 11:35am

I finally got around to figuring out Discord, mostly because I had a question about a video game (Cozy Grove) and the developer said the Discord channel would have an answer (which was true).

It’s like modern IRC! So cool! Hmm, how to describe Discord to someone who isn’t familiar with IRC…

Ok it’s an app (and website) that allows you to join “servers”, which are groups of chatrooms (“channels”). For example, the Cozy Grove server has a variety of channels with different topics: “Announcements”, “General”, “New Player Help”, “Screenshot Sharing”, “Bugs”, and many more, plus a channel for each of many international languages so non-English speakers can get help!

In the app, you can be in many servers at once, and hop between them as you please. I’m in the Cozy Grove server, and also one for my WoW guild. Henry has a server, and I made one of my own so I could invite friends in to hang out. There are some fun bots you can invite to your server — I have one called GroovyBot which plays music! You tell it what you want to hear and it searches youtube and other sources, and plays it for you. Or you can paste in a link. Everyone who is in my server (and in the “Lounge” voice channel) can listen to the music together! Henry and I play songs for each other all day while he works. You can also share streaming video by sharing your desktop. Works like a CHARM. Chloe and I watched a youtube video together that way.

I love Discord. It scratches the IRC itch (I was a heavy IRC user, back in the day), and lets me interact with friends and strangers in the way I’m most comfortable — text.

This invitation link should work for one week. Come to my server (Bucklebury) and hang out and listen to music with us in the Lounge, or just chat in the General channel. I’d love to see my blogfriends there!

https://discord.gg/udUKrRr6

See you there :) I will probably read aloud sometime if anyone wants to hear! I’ll announce it on twitter if I do.

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It’s late

June 21st, 2021 — 9:55pm

Forgot to write earlier but didn’t want to break my streak so here i am. Watching an episode of season 8 of the bake off to send me to sleep

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Great day

June 20th, 2021 — 8:24pm

It’s funny, when I start writing these posts I never know what to say and then I almost always find myself with too much to say!

Had a fabulous day. Got enough sleep, for a start, and then spent hours with a new friend, and then ate the rest of the warm German potato salad that I made yesterday, and played Cozy Grove, and listened to Mom practicing Bach, and now I’m watching Survivor (Season 40, Winners at War) and playing my ukulele until bedtime.

The weather is summery but not brutally hot. My air purifier keeps my air clean even though it’s a bit polluted outside. And I’m still alive!

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Rough night

June 19th, 2021 — 9:07pm

Last night I had the side effect double-play of nausea and joint pain. Not enough to wake me thoroughly so i could do something about it, but enough to cause crummy sleep and a much-too-early morning. But I took a walk early this morning anyway! I do love summer mornings: low sun, warm air, cool breeze, birdsong. Lovely.

Tonight I’ll do my anti-anxiety writing exercise, and rub Aspercreme on my knees, and take extra nausea meds so I’ll feel ok tomorrow! Gotta find some Pokestops so i can get some Pokeballs so i can catch more Pokémon :D

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Friday

June 18th, 2021 — 10:47pm

Another very pleasant day. Took an early walk with Mom, watched some art documentaries together. Oh! And Henry mentioned to me that Pokeman Go had been updated to make it fun for us stay-at-home non-walkers, so I reinstalled it and sure enough, I caught TONS of Pokemons right from my bed. There’s a Pokespot at the far side of the loop I make when I take a walk, so I’ll spin it tomorrow morning :) I’d forgotten how much fun it was to catch monsters out in the world. Man, 2016 seems like forever ago. That was a rough four years, whew.

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Des

June 17th, 2021 — 9:25pm

I watched “Des” when it aired last summer and loved it. Mom and I watched it today and she loved it too. What a stellar cast!

I got a decent night of sleep last night amd didn’t fade until nearly 3pm! Even took a little walk with Mom this morning before it got blisteringly hot. And I made another batch of my kickass pasta salad this morning too.

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