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Archive for June 2021

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.)


OK, I’m better now. Lol. Have been listening to music with Henry and GreenMtnGirl in my Discord channel allllll day. Come join us! (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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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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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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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 for under $20. Abebooks is a treasure trove!

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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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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!

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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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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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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Mom is here!

June 16th, 2021 — 9:20pm

My mom flew up from San Diego to visit us! YAY! First time we’ve seen her since lockdown. Now I can hear my daily Bach concert in person.

Woke up at 5:30am. So tired all day. I’ve got to get my good 10:30pm-7:30am schedule back again. I do not know what is UP with the early waking ever since my trip to Portland. It’s like my schedule got messed up and refuses to reset no matter what I do.

Tonight I will do the thing my therapist suggested, which is so hard to force myself to do even though it definitely helps. Lol. Silly brain.

It’s easy — just writing down all my thoughts/worries/stressors without reading back what I wrote and with no regard for spelling and grammar.

Ok Suzanne I’m gonna do the thing now.

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Mhairi McFarlane

June 15th, 2021 — 6:34pm

I have a feeling I mentioned Mhairi McFarlane here already at some point but I don’t really remember so I’m gonna say it again — she’s a brilliant author! I just finished another of her novels (in audiobook format) — Who’s That Girl — and it was just so darn good. SO GOOD. Marian Keyes is still my favorite author of Contemporary “Women’s” Fiction but Mhairi (pronounced Vah-ree) is definitely a close second. Her books are fun, but not fluffy.

If you like Marian Keyes, Anna Maxted, or Sophie Kinsella, you’ll like Mhairi!

Very tired day. Didn’t do anything but make cauliflower cheese and lie around. And now it’s 6:30pm. At 7pm I can legally call it “almost bedtime” and tuck myself in with some old Survivor and a bedtime snack, my favorite sliced green apple and goat cheese.

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Happy Birthday Em!

June 14th, 2021 — 4:35pm

It’s my niece’s 8th birthday! Happy birthday, wonderful Em. I hope you know that you are awesome, and interesting, and imaginative, and artistic, and creative, and SO KIND, and strong, and brilliantly intelligent, and incredibly beautiful, and a genuinely excellent person. I’m so glad to be in your life. Love forever!

I’m so tired today. Woke up way too early, couldn’t fall back asleep. Took Em out for a birthday ice cream cone and then just lay on the bed with her while she played on her iPad and we watched the antibiotics/antivirals episode of Steven Johnson and David Olusoga’s new series Extra Life (based on Johnson’s book of the same name which I need to request from the library).

Then she drifted away to do other things and I’ve just been resting and amusing myself in one way or another.

As previously mentioned, I keep all my media on an external hard drive, which I have plugged into a Raspberry Pi (wee bare-bones computer) that has media software (Kodi) that talks to my TV. I almost never actually USE the TV unless someone is in my room with me, because I need one pair of glasses to knit/play video games and a different pair to look across the room at the TV, and I prefer to curl up with my laptop anyway. Today it occurred to me that it might be possible to stream from the Kodi software to my phone, for Ultimate Coziness. A tiny bit of googling and I had my answer: tell Kodi to turn on UPnP and install the free VLC app on my iPhone/iPad. Boom. Works like a charm. Couldn’t be easier. Now I can watch my gigantic media library while cozily curled up!

Gonna get myself a cold drink and get back to series three of Taskmaster, streamed right from my hard drive to my phone :D

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Too much sun

June 13th, 2021 — 9:34pm

Washed my hair this morning and went outside to dry it in the sun around 9am. Beautiful morning. Puffy clouds, blue sky, balmy air, no FREEZING GALE blowing in off the bay. And then I had a truly delightful lunch date; we sat outdoors in the shade and talked for hours! Between the morning dose of sunshine and the afternoon of, I guess, absorbing UV light that bounced off the sidewalk, my eyes are burned, my shoulders and upper back and arms are burned. ARGH. Pale freckled reddish-heads have no business living at this latitude. I belong in Canada, where I was able to walk around outdoors in summer without a single burn.

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June 12th, 2021 — 9:38pm

Got up and chatted with Em and helped her make a banner while they all got ready for a day at the beach with her friends, to celebrate her 8th birthday. Man her parents are brave, taking five or six 7yos to the beach! Lol. I was very lucky that Henry never wanted a proper birthday party but was happy just spending time with his best friend for a birthday celebration.

And then I had the house to myself for the rest of the day! Made a big batch of pasta salad, knitted, goofed around on my phone, played Cozy Grove, listened to my mom playing Bach on the piano over FaceTime (she plays for me every afternoon), watched some Crap TV (Survivor) and some Quality TV (Britain’s Most Historic Towns). Very pleasant day.

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June 11th, 2021 — 9:03pm

I started rewatching Taskmaster series 3 yesterday. I suggest you do the same. So freakin funny!

Today was therapy day, YAY! Suzanne is the best, best, best. And I stopped at Trader Joe’s for a few things — green apples and goat cheese for my bedtime snacks, and ingredients to make my famous pasta salad. Gonna make it tomorrow if I wake up with Cooking Energy. (my recipe is here somewhere. Put “pasta salad” into the search field)

Oh and I checked the Safeway near Trader Joe’s for my favorite popsicles (Outshine brand, lemon or lime) and they had them so now I have tangy frozen treats!

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Compression socks

June 10th, 2021 — 7:18pm

My doctor mentioned compression socks at our last (online) appointment, to help with my slight edema, so I don’t need to take even more diuretics (Which are horrible. Don’t get me started). Bought a couple of pairs. Oh man. They are LIFE CHANGING! My feet have hurt for my whole life. Wearing my magical compression socks I can stand in the kitchen and cook a meal without foot pain! I’m not hefty, only 125 lbs, but perhaps the blood has always pooled in my feet? I never noticed swelling until recently. But with my heart problems maybe there were circulation issues as well.

The first pair I bought from have a compression rating of 15-25 mmHg which is not super strong. I liked them so much I bought a second pair from which are slightly stronger at 20-30 mmHg. I can feel that they have a little more squeeze, which feels great, but I’d say they are perhaps a slightly (very slightly) lower quality than the Comrad socks. In any case, I love both pairs and wear them all day. I’m surprised that the man-made fibers don’t bother me or make my feet sweaty, but they’re mostly nylon, not polyester, so maybe that’s more tolerable for me.

I recommend compression socks, even if you don’t have any dreadful health issues!

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