kayray.org

The inauguration was yesterday. I tried to ignore the whole farce as much as possible. I hope the rest of the world understands that more than half of this country is appalled and ashamed.

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In other news, I’ve been practicing my ukulele, knitting, reading, and playing No Man’s Sky on the gaming PC that Henry built for me out of spare parts! Fun.

Youtube closed down my main account a few months ago. (I was bad; I shared The Great British Bake-Off — but still, they could have given me some warning…) I thought that these two storytime videos were lost, but my nephew pointed out that there were copies on https://archive.org/details/KayrayReadsToYou! (I’ve recorded so much stuff, I can’t keep track of it all, hahahah) So here they are, on my new youtube account. Quick, watch them before youtube gets mad at me again! :)

How The Grinch Stole Christmas

The Little Engine That Could

Look at this wonderful thing: Rudolf the Red-Nosed Reindeer in Anglo-Saxon.

http://allthingslinguistic.com/post/135936899661/rudolph-the-red-nosed-reindeer-in-anglo-saxon

Incipit gestis Rudolphi rangifer tarandus

Hwæt, Hrodulf readnosa hrandeor –
Næfde þæt nieten unsciende næsðyrlas!
Glitenode and gladode godlice nosgrisele.
Ða hofberendas mid huscwordum hine gehefigodon;
Nolden þa geneatas Hrodulf næftig
To gomene hraniscum geador ætsomne.
Þa in Cristesmæsseæfne stormigum clommum,
Halga Claus þæt gemunde to him maðelode:
“Neahfreond nihteage nosubeorhtende!
Min hroden hrædwæn gelæd ðu, Hrodulf!”
Ða gelufodon hira laddeor þa lyftflogan –
Wæs glædnes and gliwdream; hornede sum gegieddode
“Hwæt, Hrodulf readnosa hrandeor,
Brad springð þin blæd: breme eart þu!”

And rendered into Modern English:

Here begins the deeds of Rudolph, Tundra-Wanderer

Lo, Hrodulf the red-nosed reindeer –
That beast didn’t have unshiny nostrils!
The goodly nose-cartilage glittered and glowed.
The hoof-bearers taunted him with proud words;
The comrades wouldn’t allow wretched Hrodulf
To join the reindeer games.
Then, on Christmas Eve bound in storms
Santa Claus remembered that, spoke formally to him:
“Dear night-sighted friend, nose-bright one!
You, Hrodulf, shall lead my adorned rapid-wagon!”
Then the sky-flyers praised their lead-deer –
There was gladness and music; one of the horned ones sang
“Lo, Hrodulf the red-nosed reindeer,
Your fame spreads broadly, you are renowned!”

This delights me :)

A kind listener just emailed to ask if I was planning to record RotK book 2 and I had a panicky moment — did I never finish LotR? Did I only imagine that I had finished? I’m pretty sure I finished the entire trilogy; I have no clear memories of recording that book, but that’s par for the course…

So I did a search of my own audiobook archive, and there were the files. *Whew*. Checked my various collections on archive.org and found that I had indeed uploaded the files when I finished the book. *Whew* again. Looks like I just forgot to post the links on http://kayray.org/kayray-reads/. The links are now there.:) Thanks, Arnold R.!

I discovered DJ Riko’s Christmas mixes in 2007. I’ve loved them ever since, and listen to them all, over and over, starting on the first day of November. Yes, that’s too early for Christmas music but I allow myself to start early with Mixmas because it is so special and wonderful and makes me so happy.

Every year I wait and wait and wait for DJ Riko to post the new mix for that year. And he just tweeted the link for Mixmas 2016! I’m so excited! It’s taking ten minutes to download, so I have time to write this post while I watch the download progress meter.

One minute to go!

You can find all the Christmas Mixes here: http://www.djriko.com/mixmases.htm.

Merry Christmas! DJ Riko, if you ever bump into this post — thank you thank you thank you for filling our Christmases with wonderful, awful, beautiful, terrible, tacky, glorious Christmas music :)

Jenny Lawson, @TheBloggess on twitter, is a hero of mine. She has a variety of health issues, both mental and physical, and she has written a couple of hilarious and moving books about dealing with mental illness and crazy childhoods and such. I HIGHLY recommend Furiously Happy and Let’s Pretend This Never Happened if you have depression and anxiety (or know someone who does, and trust me, you know someone who does, even if they hide it well) or if you had a very strange childhood. Lol. Check, check, and CHECK.

Anyway, because of a taxidermied boar’s head named James Garfield (long story), every year she does a blog post where she lets people who are struggling to buy Christmas presents for their kids post their Amazon wish lists in the comments. People who have a few bucks to spare can choose to buy something anonymously for a needy family.

Read her post here:

The Seventh Annual James Garfield Miracle

Then scroll down to the comments and help someone make Christmas a little better for their kids. Or ask for some help yourself, if you need it. You can pay it forward when things are easier.

I’ve just bought some adult stress-relief coloring books and colored pencil sets for Cora, the woman who works with needy families and homeless teenagers in Florida. Merry Christmas, Cora!

Anyone who loves British books and culture has heard of mince pies, but they’re not really a thing here in the States. A few years ago, Henry and I bought a bottle of mincemeat and made our own version of mince pies. They were very good. This year, since I’m feeling energetic enough to make Christmas treats, I wanted to make mince pies but I couldn’t find mincemeat in any stores so I made my own. I combined and tweaked a few recipes and made my own version of mincemeat. My recipe is easy and tasty and uses ingredients you can find in any store.

Here’s my recipe. Note: mincemeat contains no meat.

Kara’s Mincemeat

• 1 stick of butter
• 1 cup each raisins, golden raisins, and dried cranberries, roughly chopped (you can substitute other dried fruit if you want, but keep it heavy on the raisins)
• 2 tablespoons marmalade (should be bitter)
• 1/2 cup dark brown sugar
• 1 green apple, peeled and grated
• zest and juice of 1 lemon
• 1/2 cup brandy
• 1/2 tsp cinnamon
• 1/2 tsp nutmeg
• 1/4 tsp ginger
• 1/4 tsp cloves
• 1/4 tsp salt

Melt the butter in a saucepan, mix everything else in, cover, and simmer over very low heat until the liquid is mostly absorbed and the fruit is plump and soft, stirring frequently. Add another big splash of brandy if you want! It’s only once a year. This turned out SO good — way way better than the bottled stuff. The bottled stuff probably didn’t have brandy in it ;-)

Let the mincemeat sit overnight or so.

Ok now you can make the PIES.

Preheat the oven to 350F. Make piecrust or, if you’re like me and don’t want to bother, buy some ready-to-use raw pie dough. Roll it out a bit thinner and use a glass or something to cut circles that are a little bigger than the bottoms of your muffin tin cups and press them into place. You don’t want the dough to go all the way up the sides of the cups — maybe a 1/2 inch or so.

Fill with just a spoonful of mincemeat. Not too full! The mincemeat will boil and you don’t want it to boil over the edges of the dough.

Bake for 25-30 minutes. Let cool before trying to remove from muffin pan. Devour. Make more.

Save some for Santa!

Hey everyone! Happy December. We need a little Christmas this year, huh? I recommend DJ Riko’s Christmas mixes: http://www.djriko.com/mixmases.htm Scroll down and download them all.

My mood continues stable and I feel cheerful most days. I recorded a chapter of “Betsy and Tacy Go Downtown” last week and I’ll do more soon. Oh, and I went to the movies last night with my friend Uwimana to see “Moana”, the new Disney movie, and it was such fun to go OUT with her and to see a movie with a beautiful message of hope and courage. Just what we needed in this dark year.

And: a believable heroine; a Polynesian teenager who isn’t Barbie-shaped, whose quest depended on courage, determination, trust, and choices — not romance or a handsome prince! I didn’t think Disney could do it, but they did.

I don’t know if you men out there, no matter how enlightened and feminist you are, can imagine what it feels like as a woman to see a “Hero’s Quest” movie with a truly female hero — not a male personality in a female body, but a believable, flawed young girl on her way to womanhood. She didn’t flirt, she didn’t bat her eyes; she used her heart and her mind, her wits and her strength. It was amazing to see, and to know that kids everywhere will see a new kind of Disney heroine; a chief’s daughter who will someday be a chief herself, and who makes a /choice/ to continue her quest even when it seems impossible.

The animation was glorious, particularly the “voyagers” sequences. I got choked up in the same way that I get choked up watching films of the Apollo missions. Humanity’s drive to discover!

Here I am, at long last. I don’t want to jinx anything, but I think I”m finally doing fairly ok. 30mg of Lexapro is working well and my mood is generally pretty good. 1400mcg of Uptravi still causes unpleasant side effects but they are bearable and manageable. I bravely called my insurance company to see if they would cover any kind of massage therapy, since although massage is the only thing that relieves the Uptravi joint and muscle pain, I can’t afford it anymore — and they DO. (Wasn’t I brave to call and ask??) So I started physical therapy last week. It’s helping with the pain and they’re teaching me some gentle stretches and stuff, too, to try to improve my overall condition.

I haven’t recorded any chapters in a long long time but I’ll try to do a little Betsy-Tacy soon.

The New OK Go video is heartbreakingly beautiful:

Sorry, friends, for the lengthy silence. 1600mcg of Uptravi kicked my butt. I never quite got accustomed to it comfortably and then a couple nights ago I had a sudden terrible bout of all the side effects all at once in the middle of the night and I wished I was dead for many hours. Too much to bear. I consulted with my care team at UCSF and decided to go back down to 1400mcg. Started that last night.

Plus in the last couple months I’ve had a couple of viruses and a return of the deep dark scary depression. The depression, at least, is getting better, since lovely Kory the psychiatrist upped me to 30mg of Lexapro.

Hoping I’ll be functional soon and able to read to you again.

On Thursday (5 days ago) I forgot to take my morning meds. I was able to take most of them at night since none of them are duplicated except for the Uptravi… So I had to skip that one dose.

My body FREAKED OUT when I took my next dose that evening. The next day was a horrible drastic return of all the side effects, just as bad as when I first started 1600mcg. The last few days have been almost unbearable. Plus really bad depression and anxiety — I don’t know if that’s because all of a sudden I’m physically miserable all the time again, or if there’s something else going on.

Every day is slightly better than the day before, so I’ll catch back up to where I was eventually. Yesterday was only terrible between noon and 7:00pm, and at night, for a little while, I didn’t feel depressed.

Gah.

(Note to those who aren’t on Uptravi: if you miss three days in a row, you have to go back down to a lower dose and re-titrate. It’s serious stuff.)

Edit: oops, the links were bad. I’ve fixed ’em. :)

I think this one took me about a year. The last time I posted a new “Kayray Reads to You” recording was September 2015. Oof. It’s been a hard year.

Betsy and Tacy Go Over the Big Hill: the third book in the Betsy-Tacy series by Maud Hart Lovelace. The series is based on the author’s life; her family and friends have been renamed, but they really were just like the the people in the books! In this book, Betsy, Tacy, and Tib all turn ten years old, and they’re obsessed with Kings and Queens.

Betsy and Tacy Go Over the Big Hill: 01 Getting to be Ten
Betsy and Tacy Go Over the Big Hill: 02 Ten Years old
Betsy and Tacy Go Over the Big Hill: 03 The King of Spain
Betsy and Tacy Go Over the Big Hill: 04 Naifi
Betsy and Tacy Go Over the Big Hill: 05 The School Entertainment
Betsy and Tacy Go Over the Big Hill: 06 A Quarrel
Betsy and Tacy Go Over the Big Hill: 07 Out For Votes
Betsy and Tacy Go Over the Big Hill: 08 Little Syria
Betsy and Tacy Go Over the Big Hill: 09 The Quarrel Again
Betsy and Tacy Go Over the Big Hill: 10 A Princess
Betsy and Tacy Go Over the Big Hill: 11 A Queen

Ok guys, I’ll probably be feeling well enough to do some recording soon, knock on wood. I’m still working on Betsy-Tacy for “Kayray Reads to You” but I need to choose a new solo for LibriVox.

I want to do a kids’ book. It must be in the Public Domain (published before 1923), beautifully written, and one I haven’t done yet — see http://kayray.org/my-recordings/.

I’m thinking of A Wind in the Willows, but I haven’t quite decided. Any suggestions? No matter what I choose now, I’ll be glad to have a list for the future!

Monday was my 4-weekiversary on 1600mcg of Upravi and the last two days were without headaches, nausea, or really bad pain. So that’s good! Lots of fatigue still, but that’ll probably get better in time too.

I should have mentioned before that I jumped the gun on lowering my nighttime oxygen. 2 lpm was ok for a couple nights and then I was back to waking up gasping for air again, so I’m back to 3 lpm all night. But I don’t usually need it at all in the day unless I’m walking around!

I’ve been on 1600mcg of Uptravi for 2 1/2 weeks now and it’s kicking my butt. So much body pain, so much joint pain, so many terrible headaches, so much nausea. I’m eating imodium like candy. I’ve been sleeping badly and having a lot of nightmares. I’m kind of depressed too, but I think it’s probably just from feeling horrible all the time so I’m trying not to panic.

BLEAH.

It’ll get better someday.

Librivox’s 11th anniversary is today, August 10th 2016! We had a 6-week drive to finish nearly 200 books in order to reach 10,000 books by our anniversary, and we not only reached that goal easily but we surpassed it by 22 books. We now have 10,022 free audiobooks in our catalog!

Have a look at this thread:
https://forum.librivox.org/viewtopic.php?f=18&t=61402

Everyone pitched in — book coordinators chased down languishing chapter claims, narrators helped out with books that were lingering unfinished, proof-listeners took on extra work, admins cataloged the finished books, our cover team made cover art for all these extra books, and many soloists put in an extra effort to finish up those solos that were close to completion.

That’s what I did. I wasn’t planning to finish Dracula till December, but I really pushed myself in those few hours when I felt ok (and the house was relatively quiet) and got it done in time to be part of the 10,000! My proof-listener, Mark, managed to get all those long chapters proofed when he wasn’t playing with his grandkids, and Ann cataloged it swiftly.

And here it is, complete with beautiful cover art made by Annise:
https://librivox.org/dracula-by-bram-stoker-2/

Happy listening! Have your brandy and garlic at hand in case you feel faint or you notice a strange mist pouring in over your windowsill…

Oh, I said I’d tell you about a new podcast that I discovered! It has really helped me pass the time on days when I feel well enough to listen to something but not well enough to watch tv or knit.

The show’s website is fairly awkward, so I’ll give you a link to the show archive. Poke around, find something that looks interesting, and you’re in for a big treat.

http://www.youmustrememberthispodcast.com/search-archive

From the “About” page:

You Must Remember This is a storytelling podcast about the secret and/or forgotten histories of Hollywood’s first century. … [T]he podcast is the brainchild of Karina Longworth, who writes, narrates, records and edits each episode in her home.

This podcast is a heavily-researched work of creative nonfiction. Every reasonable attempt is made at accuracy, but quite often when it comes to the kinds of stories we explore here, between conflicting reports, conscious and unconscious mythologizing and institutionalized spin, the truth is murky at best. That’s kind of what the podcast is, ultimately, about.

To be honest, I started with the Manson series. I needed something really compelling to distract me from the pain, and I binged those episodes straight through over a weekend. Damn. I was born in August of 1969 and I remember hearing muttered conversations about the Manson Family in the early 70s, still. It was fascinating to get such a clear picture of the world in which those murders took place.

And then I started at the beginning of the episodes and worked straight through. Karina has just started a summer season of 6 episodes about Joan Crawford so now I am waiting waiting waiting for every new episode!

Sorry about that long gap between posts again. This year has just been an endless cycle:

New medication. Bad side-effects for weeks. Slowly get better. Feel ok for a few days. Increase dose of new medication. Repeat.

A week and a half ago I finally started the highest possible dose of Uptravi: 1600mcg 2x/day. The side effects have been brutal. Same as in all my other posts, but extra-bad.

At this point I’m ok for about two hours after I take my first dose, and then I get hit with nausea, full-body aches, knee and foot pain, headache, hot-face, and fatigue. The headaches have been better for the last couple of days but the fatigue is worse. Or maybe it’s not actually worse, I just notice it more now that the headaches are better :)

Anyway. I lie in bed all day after that first two hours, just resting. I start feeling better again after about 6 hours, and now I sleep through whatever happens to me after I take the nighttime dose, though the first few nights were bad.

But that’s ok. Uptravi is definitely helping me feel better (when I don’t feel miserable, lol). I have turned my nighttime oxygen down from 3.5 lpm to 2.5 lpm, and I usually forget to turn it on until I go to bed, in contrast to six months ago when I needed it in the early afternoon almost every day. In the morning I can walk slowly for a while without any extra oxygen at all.

So right there, that’s worth all this agony! And the agony is coming to an end. In a month or two the side-effects will be much more tolerable, and I won’t be increasing again and I can just enjoy taking slow walks in the morning without extra oxygen :)

Wow. Time flies.

Things are pretty good. I increased my Uptravi to 1200mcg about three weeks ago and didn’t have the avalanche of side effects that I was expecting. I had two or three very bad days of full-body aches and exhaustion, and lots of small headaches and episodes of facial flushing, and my knees and feet hurt most days. But no killer make-you-cry headaches, thank goodness, and not the “4-times-a-day painfully burning hot face for a full hour” flushing that I experienced with the last increase. It was just generally easier this time than the hop from 800 to 1000.

I have my arsenal of weapons against the side effects, which I will list for the benefit of other Uptravi patients who might find their way here: ice packs for my hot face, imodium and simethicone for the tummy troubles (two imodium a day, in the evening because they make me sleepy, and simethicone whenever my stomach starts to feel “wrong”), ondansetron for nausea (I bought some “Chimes” ginger/mango chews from Trader Joe’s that are quiet effective against light nausea, too), aspercreme for the muscle and joint pain (works well for muscle pain, less so for joint but better than nothing), flonase for nasal congestion.

I think I have finally noticed a slight, very slight, improvement in my pulmonary function. For most of 2016, since stopping the Tyvaso, I’ve needed to use oxygen almost the entire day. Even at rest in the afternoon I’ve needed 3 liters of o2 just to stay at 93%. Not good. But for the past, oh, three weeks or so I’ve noticed myself forgetting to turn on my oxygen machine until the evening, and sometimes I check in the afternoon and find that I’m at 93% even without breathing extra oxygen.

Walking from room to room still makes me lose my breath, or even bending down to pick something up off of the floor, but being able to breathe a little better while sitting still is very nice anyway! Next Monday I’ll go up to 1400mcg, and then a month after that to 1600mcg, and that’s the top dose.

My mood has been good, I’m sleeping and eating well, and my life is comfortable living here with my lovely family. I’ve been working on Dracula when I can and am halfway through the book! I started a new knitting project recently, am reading a good book, and have discovered a new podcast. I’ll write about all that in my next post.

I started 1000mcg of Uptravi about a week ago, and the side effects just hit. All the regular stuff, plus my knees hurt a bit (yay for aspercreme) and I’m waking up nauseated in the middle of the night and having some mild nausea in the daytime. A new thing is flushing: my face gets boiling hot and bright red a few times a day. It’s very uncomfortable, but a damp cold cloth on my face helps and it doesn’t last too long.

The side effects always seem worst about a week after the new higher dose, so it shouldn’t get much worse than it is now.

I’ll just keep resting.