Category: Blog


Remodulin

March 20th, 2017 — 9:23pm

Uptravi isn’t working for me. I’m frustrated and sad. After all those months (Mar-Oct) of pain and suffering in 2016 to get up to the highest dose I had maybe three good months (Nov-Jan) and then I started to go swiftly downhill again. My tests in Feb came back pretty bad, and my shortness of breath (SOB) is much worse lately. During those three good Uptravi months I turned my nighttime o2 down to 2 lpm and I barely needed oxygen in the daytime at all. Now I’ve had to turn my o2 up to 4 lpm and use it a lot in the daytime as well. Meanwhile I still have constant unpleasant painful side effects.

The only remaining (last resort) therapy for PAH is infused drugs, which means wearing an infusion pump 24 hours a day forever. This freaks me out and I’ve been avoiding it for 14 years by the lucky timing of a brand-new drug being made available just when I needed stronger therapy (Tyvaso, then Uptravi). But this time there’s nothing new available or coming in the near future.

I’ll be going on Remodulin (which spellcheck changes to “remodeling” every single time). http://remodulin.com/

My doc is pushing IV infusion but I’m insisting on subcutaneous (SQ) for a variety of reasons. Smaller pump, no hospital stay to get started, less risk of infection, no risk of blood clots and stroke, less danger in general. The drawback is several days of severe pain cause by the irritation of the medication where it enters the body under the skin. This, they say, lasts up to a week after you start a new infusion site, and you need to start a new infusion site every six weeks or so, generally. (This seems to vary wildly from patient to patient, as does the severity and duration of infusion site pain.)

So this sucks.

I’m clinging to the very real possibility that Remodulin might make me feel and breathe better in spite of the pain and annoyance.

They made me go up to UCSF Medical Center to talk with a social worker for a couple of hours on Friday, and now we wait insurance to approve my new meds, and then they will try to talk me into an IV catheter again, and then I will insist on SQ infusion because I am a Difficult Patient, and then the specialty pharmacy will send a homecare nurse to train me how to deal with these new meds — pump and catheter and everything. Ugh. I wish they’d just give me an instruction manual.

5 comments » | Blog

entertainment in a scary world

February 28th, 2017 — 9:03pm

I saw my pulmonologist last week and the news was bad. So. With that, plus the disturbing state of politics and the suspicion that nothing really matters anyway because the world will be ending soon, I’ve been distracting myself with a lot of high-quality entertainment which I will now share with you in case you need to escape from reality for a while, too.

1. http://mcmansionhell.com After you’ve laughed at the appallingly ugly houses until you can’t breathe, you can read Kate’s informative “McMansion 101” and learn exactly why McMansions are so terrible!
http://www.mcmansionhell.com/101

2. I think I mentioned the “You Must Remember This” podcast a few months ago, but I’ll tell you again how great it is. Karina is currently doing a series on Dead Blondes. Fascinating and so tragic. Do listen, won’t you?
http://www.youmustrememberthispodcast.com/search-archive If you’re a new listener, start with Peg Entwistle (January 2017) and go through the Dead Blondes series with me.

3. Stand-up comedy on Netflix. So much good stuff. A couple weeks ago, when I reached the end of 30 Rock for the umpteenth time, Netflix suggested that I watch Jim Gaffigan’s new stand-up special. So I did. And then I watched a bunch of his older specials. Then I watched a Louis C.K. special that I hadn’t seen, Trevor Noah’s “Afraid of the Dark”, and the new Aziz Ansari special. (His segment on Creepy Guys was so excellent.) Then “Neal Brennan: 3 Mics” (I heard him on Fresh Air. I love comedians who talk about their depression. Stephen Fry, Carrie Fisher… Side note: I’m trying to remember another depressed comedian who was on Fresh air recently… within the last 6 months, probably. It’s driving me nuts. After I post this I’ll go was through the Fresh Air archives and try to find him. Edit: Found him! Chris Gethard: http://www.npr.org/programs/fresh-air/2016/10/24/499157885/fresh-air-for-october-24-2016?showDate=2016-10-24)

I like all of these comedians and they made me laugh a lot but the funniest stand-up special of all (so far) was “Mike Birbiglia: Thank God for Jokes”. I’ve been a Mike Birbiglia fan ever since I heard his bits on This American Life. “Thank God For Jokes” made me laugh and laugh and LAUGH.

Hang in there, everyone. Enjoy the fresh air, clean water, and healthcare while you still can.

By the way: Since all is not yet entirely lost, I subscribe to
http://www.dailyactsofresistance.org and I call the politicians who need to be called.

3 comments » | Blog

The New Colossus

February 21st, 2017 — 10:48pm

A librivox Weekly Poem: 17 readings of “The New Colossus” by Emma Lazarus, the poem on the Statue of Liberty

https://librivox.org/the-new-colossus-version-2-by-emma-lazarus/

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
Mother of Exiles. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbour that twin cities frame.

“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

Comment » | Audiobooks, Blog

February 4th, 2017

February 4th, 2017 — 11:32am

I am simultaneously ashamed of (less than) half my country for electing this dangerous fool, and incredibly proud of (more than) half my country for vocally resisting the evil machinations of Trump and his henchmen and puppetmasters.

The day of the Women’s March, two Saturdays ago, I watched in awe as people all over the world demonstrated with peace and strength and unity, and I felt hopeful for the first time since the election. I’m not able to join such protests because of my disabilities, but my cousin, brother, sister, and aunt all marched and protested, and added my name to their signs so that I could be with them.

2017-01-20 17.05.06

And then a week later the malevolent Executive Order to ban Muslims from entering our country made me feel helpless, disgusted, and furious all over again. This cruelty and bigotry is revolting. Who among us is not descended from immigrants? What right have we to deny Muslim families the hope for a better future that our ancestors enjoyed? There is no “…unless they’re Muslim” on the Statue of Liberty:

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
MOTHER OF EXILES. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.

“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!

Almost immediately our wonderful strong brave citizens of all faiths showed up at airports in thousands to peacefully protest. My brother in NYC joined the protest there (have I mentioned how proud I am of my family?) and since I could not march, I donated to the ACLU.

I have been phoning and mailing our representatives and I understand that they’re receiving an unprecedented amount of anti-Trump, anti-Bannon, anti-fascism communication so I’ll continue.

According to The Washington Post, the State Department has temporarily reversed the Muslim ban: https://www.washingtonpost.com/politics/state-dept-reverses-visa-revocations-allows-banned-travelers-to-enter-us/2017/02/04/0ab5880a-eaee-11e6-bf6f-301b6b443624_story.html?utm_term=.964fa419d6bf But of course that’s only temporary.

If you, my dear listeners, have been protesting and resisting, please keep it up! We must stay strong, we must be vigilant. We /must not/ let hate, bigotry, racism, selfishness, ignorance, greed, and misogyny prevail. This country is better than that.

2 comments » | Blog

Jan 21, 2017

January 21st, 2017 — 10:46am

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.

***************
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.

Comment » | Blog

A couple of story time videos

December 21st, 2016 — 8:27am

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

1 comment » | Audiobooks, Blog

Hwæt, Hrodulf readnosa hrandeor!

December 17th, 2016 — 10:15am

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 :)

Comment » | Blog

oops! RotK Book 2

December 14th, 2016 — 2:49pm

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.!

1 comment » | Audiobooks, Blog

Brand new Mixmas!!

December 13th, 2016 — 9:16pm

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 :)

Comment » | Blog

The Seventh Annual James Garfield Miracle

December 12th, 2016 — 7:04pm

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!

Comment » | Blog

Amazing mince pies, USA-style

December 4th, 2016 — 12:57pm

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.

mincemeat

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.

filling the pies

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.

Untitled

Save some for Santa!

3 comments » | Blog, Recipes

Happy December!

December 2nd, 2016 — 12:00pm

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!

2 comments » | Blog

Happy Thanksgiving!

November 25th, 2016 — 12:09pm

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:

3 comments » | Blog

End of October already

October 25th, 2016 — 10:45am

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.

3 comments » | Blog

ugh (again)

September 12th, 2016 — 7:57am

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.)

2 comments » | Blog

Betsy and Tacy Go Over the Big Hill

September 10th, 2016 — 10:49am

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

BetsyAndTacyGoOverTheBigHill

6 comments » | Audiobooks, Blog

Choosing a new book

September 4th, 2016 — 9:35am

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!

13 comments » | Audiobooks, Blog

A whole month on 1600mcg

September 2nd, 2016 — 10:07pm

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!

1 comment » | Blog

ouch

August 18th, 2016 — 9:50pm

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.

11 comments » | Blog

Dracula

August 10th, 2016 — 7:36am

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/

Castle Dracula

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…

2 comments » | Audiobooks, Blog

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