Remodulin update

May 23rd, 2017 — 5:41pm

I’m doing fine on Remodulin! The site pain was very bad for about a week, and after that it only hurt in the afternoon and evening, and by the 11th day it stopped hurting, mostly. (I can still feel it — but I wouldn’t say it hurts.)

Ice was the only thing that really helped, so I spent a lot of time in bed with ice on my leg.

I’m up to 0.006mL/hour now, and down to 200mcg of Uptravi. On Thursday I’ll go up to 0.008mL/hour and stop taking horrible Uptravi altogether! Hooray, hooray, hooray.

Every three days I put about 1mL of meds into a little vial in my pump, a chore that only takes ten minutes or so, counting washing hands and cleaning all the equipment with alcohol wipes, etc. They supplied me with two pumps, which I need to switch every three days to make sure I always have at least one that’s working.

Showering is a bit of a chore. I unclip my pump, since it’s fine to stop my meds for a few minutes; the delivery is so slow that it doesn’t even build up to a drop on the end of the needle while I shower. Then I cover the site with a bit of plastic with sticky edges, and then cover THAT with a sheet of this special cling-film called Glad Press ‘n’ Seal. I tuck a little bit of tissue under the first plastic barrier to absorb any stray drops of water that might get through. Then while I shower I keep the shower handle low, to minimize spray on the site. Not too hard, just a little bit annoying.

Being off the Uptravi is such a relief. I had forgotten what it was like to not be in pain all the time. No more full-body aches. No more knee pain. No more foot pain. No more random muscle pain. Fewer headaches, less nausea. My brain feels clearer.

My Remodulin dose is still very tiny, but I think it might be helping already. Maybe. I think my oxygen saturation is a little better, on average. I need a nap every afternoon, though.

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Fargo Bridge Tournament Scene

May 15th, 2017 — 2:02pm

Couldn’t get it out of my head so I googled. Presented here for your enjoyment. Because WOW.

https://en.wikipedia.org/wiki/Prisencolinensinainciusol

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Remodulin SQ: the first few days

May 9th, 2017 — 8:47pm

I need to take my mind off the evil, treasonous, poisonous Tr*mp administration (I wonder how long until I might be arrested for saying that?), so here’s another post about Remodulin SQ. My first infusion site is on my upper left flank, a spot I chose to be not in the way while I’m sleeping. Infusion sites last 4-6 weeks, with luck.

Day 1 (Friday): Started Remodulin SQ around 1pm. By evening, the infusion site was burning and itching a bit.

Day 2: Infusion site had swollen somewhat, and was quite painful. It was painful to put any weight on that leg, so I had to hobble around on a cane. I mostly stayed in bed and napped. I tried ice, Aspercreme, and CBD oil, and they all helped. The CBD oil in particular seemed to give a lot of relief, though that might have been a coincidence because it never helped again.

Day 3: The pain was somewhat better. Used lots of ice all day. Sat in bed and sewed a thigh-holster out of purple flannel and elastic for my pump.

Day 4: Purple bruising around infusion site (normal). Terrible terrible pain all afternoon and evening. The only thing that helped was ice, and the pain was only relieved while the ice was actually pressed against the site. So, I napped and iced my leg most of the day.

Day 5 (today, Tuesday): woke up with much less pain! Could walk without a cane for the first time since Friday! Cooked dinner! Sat outside with Rosie! By evening I was very tired and the pain was returning so I called it a day and went to bed at 6pm with a book and an ice pack. The ice kills most of the pain but only while I’m applying it.

So it’s difficult but tolerable. I’ll be increasing the dose on Thursday. I don’t know if the pain will increase as the dose does — apparently, for some people it does and for some it doesn’t. And then on top of site pain there are all the other side effects, which, on this tiny starter-dose, are nonexistent as of yet. Fingers crossed.

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Starting Remodulin SQ

May 7th, 2017 — 8:36am

Starting Subcutaneous Remodulin:

(Again, I’m posting so that my friends know what’s going on, and also so that other patients might find useful information.)

On Friday, Henry and I travelled up to the UCSF medical center (Uber, BART, Muni). I always allow a good time buffer when taking public transportation, so we left at 9:30 and arrived at 11 for my 11:30 appointment. Hung out in the waiting room for a while and then the nice Accredo nurse, Soyoung, who trained me at home, showed up! I wasn’t expecting that, and it was nice to see her again. Eventually we went back into an exam room and a nurse tested my vital signs as usual, and took a quick EKG. All normal (for me).

Then Nurse Jill came in. She’s one of the team of three nurses who help Dr. Janmohamed’s Pulmonary Hypertension patients — Jill, Nimi, and Amanda. I’d never met Jill before but we had spoken on the phone many times, so it was nice to finally meet her! She’s absolutely lovely. We had a long talk about how I’m feeling — PH symptoms, Uptravi side effects, etc., and she listened to my heart and lungs. And then finally, finally, finally, I was allowed to start my meds. Soyoung asked if I needed another demo, but I said nah, I’m ready to just do it myself.

So, as Jill, Soyoung, and Henry watched, I started a new infusion site, filled a vial with meds, put the vial into my pump, and programmed my pump. It’s a complex multi-step process which I’ll get Henry to video one of these days so you can see exactly how it’s done.

And then, once the meds were actually infusing into my body, Henry, Soyoung, and I waited. And waited. And waited. A nurse showed up now and then to check my vitals, which were fine. After three hours of being observed they let us leave. At that point there was very slight pain at the infusion site but not much.

By the time I got home, it was hurting a bit more, and by bedtime it was hurting even more. Ice helped quite a bit, though I need to be careful not to let my infusion site get damp from condensation.

I didn’t sleep well, but not because of the pain, which was moderate. The problem was that one of my oxygen connectors worked itself loose in the night, so I kept dreaming that I couldn’t breathe, and waking up over and over gasping and with a ferocious headache. I finally thought to check my connectors around 5:30am but never went back to sleep, gah! So yesterday was pretty rough, between site pain and no sleep. I kept icing the site, which helped, and I tried rubbing a little Aspercreme around the area, which also helped.

Jill and Amanda both told me that one of their Remodulin SQ patients says that marijuana oil rubbed around the infusion site is the best pain relief, so M got one of his SF friends to go to the medical marijuana dispensary and get me a bottle of Absorb CBD oil (CBD gives pain relief but doesn’t get you high). I rubbed a bit on last night, and within 20 minutes the pain was much much better!

Last night I slept well, and this morning the pain is still quite tolerable. I don’t know if the CBD oil is still effective, or whether enough time has passed that my body isn’t freaking out anymore. Whatever.

I am starting at the lowest possible dose, which is (get this) 0.002mL/hour. My little pump holds enough meds for three days, so on Monday Soyoung will show up at my house again and make sure I do a good job changing the vial. Every week we’ll raise the dose by 0.002mL until I can’t tolerate the side effects, just like we did last year with Uptravi. And maybe someday I’ll actually be able to breathe better. Maybe.

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remodulin starter kit

May 4th, 2017 — 9:53am

A couple of days ago I got my Remodulin starter kit so I can start my meds tomorrow at my doctor’s office. I have searched all over the internet for information about Remodulin SQ (sub-Q, subcutaneous) so I know there’s no one else who has ever posted information about exactly what kind of supplies your specialty pharmacy will send you. This post will be photo-heavy!

Remodulin SQ is pumped through a tiny catheter under your skin, 24-7. It has all the usual treprostinil side effects: nausea, vomiting, diarrhea, headache, dizziness, jaw pain, flushing, skin rash, or injection site reactions. The injection site reactions can be severe, but they say the worst pain only lasts about a week after changing infusion sites, which you do every 4-6 weeks.

First I opened up a small box that contains three syringes of PLO-gel, which is a topical pain relief compound containing all kinds of interesting things including ketamine:

Remodulin SQ starter kit Remodulin SQ starter kit

Then I opened the Big Box:

Remodulin SQ starter kit Remodulin SQ starter kit

Here’s the packing list:

Remodulin SQ starter kit Remodulin SQ starter kit Remodulin SQ starter kit
Remodulin SQ starter kit

Here’s what I got:
Paperwork to sign and send back
Drug info sheets
Two CADD-MS3 pumps plus clip-cases, batteries, and manual
A binder to keep records in
Shower supplies, to keep everything dry
alcohol wipes
skin prep wipes (to make skin a little bit sticky to that the infusion set will stay in place)
Cleo infusion sets (a purple plastic gadget that shoots a little needle into your skin and leaves behind a tiny 9mm-long catheter)
Tubing to connect medication pump to infusion site
IV3000 sheets (stick-on dressing to protect keep the infusion set in place)
Durapore tape to tape down the tubing to my body so it doesn’t snag. Excellent tape.
Stuff to get the medication out of the bottle and into the pump (syringes, vial adapters, etc)
Sharps container
Rubber gloves (I guess in case there’s a situation where I can’t wash my hands before doing medication stuff. Also in case someone needs to help with my meds — it’s dangerous for others to get it on their skin.)
A travel bag (insulated, for temperature control)
A plastic tray, for a nice clean work surface
And of course a 20ml bottle of Remodulin, which was packed in silver bubble wrap with a cold-pack.

Here are a few more pics:

Remodulin SQ starter kit Remodulin SQ starter kit Remodulin SQ starter kit

And here’s an album of all the photos I took:
Remodulin Starter Kit

If you have any questions at all, I’ll be glad to try to answer. I hope someone else who’s considering Subcutaneous Remodulin finds this post. This kind of specific information would have helped me a lot while weighing my options.

Wish me luck tomorrow!

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hospital stay

April 14th, 2017 — 8:59am

Last week I had a couple of episodes of seriously racing heart (145-ish) with very low o2 (80%-ish). My pulmonologist wanted me to go to the ER, so when it happened a third time, I did. That was the afternoon of Thursday the 6th. Henry drove me to Washington Hospital in Fremont, and they admitted me right away, as they always do when you show up with heart problems!

They diagnosed me with atrial fibrillation. Yay, a brand-new condition! They got my heart stabilized fairly quickly with IV amiodarone, and took chest x-rays and an echo. I had fluid built up around my lungs because my heart was inefficient, so they put gave me a diuretic, which is NOT FUN when you’re hooked up to a bunch of machines! I started out in the ICU ward, but because I was a “walky-talky” patient (mobile and alert) they moved me to a private ICU room with a bathroom, thank goodness. They kept me in the ICU because of all my other underlying conditions. For example, I needed to stay on 6 liters of oxygen even after my heart had calmed down, because of my PAH, and my BP is permanently low. The ICU nurses were great! Najib, Shaina, Karla, Joseph, and Heather. They trusted me to detach from and reattach to the monitors and machines when I needed the bathroom.

After a day on IV amiodarone, they put me on tablets and observed me for another day. At this point (Saturday) they were ready to move me to a regular room, when suddenly I had another bout of AFib. Horrible, horrible. So, back on the IV drugs (they work faster) for 24 hours, then stronger tablets for 24 hours, then observation in a regular “telemetry” room for 24 hours, with orders to walk around and see if that would trigger more AFib. In a telemetry room, you are hooked up to a small portable monitor, which beams your stats to the nurses’ station. Nice! My telemetry room nurses were Trang, Kim, and Priscilla.

They sent me home on Tuesday night. *whew*

All the doctors were great, but especially Dr. Ahmad, the intensivist. He was kind and soft-spoken and he REALLY listened to me. He kept in touch with my pulmonogist at UCSF to make sure I was getting the right care, AND he already had some experience with PAH so my meds and symptoms weren’t a mystery to him.

The worst part of the whole thing, besides the usual hospital sleep-deprivation, was that my Uptravi reactions were so terrible while I was there. Hours and hours of painful hot-face and full-body aches and crushing fatigue almost every day. I don’t know if it was worse because of the stress of being in the hospital, an interaction with one of the other meds they gave me, or if they accidentally missed giving me one dose of Uptravi (I suspect this is the case, since the reactions continue to be terrible even though I’m at home). Awful, awful, awful.

The food was pretty great. Most days I had three quite edible meals, and along with most lunches and dinners they gave me two salads and fresh pineapple at my request! I gained 8-10 pounds while I was there so I’m up to 129 and no longer severely underweight, just a little underweight.

Now I have followups with my pulmonologist, a cardiologist, and endocinologist (my thyroid levels were a bit high, which could have contributed to the whole thing). Eventually, when I’m stable, we can go back to the Remodulin plan, which has of course been postponed. Grr. But at least the nurse came and trained me and Henry on how to start an infusion site, and how to fill, attach, and program the medication pump.

Thanks, Washington Hospital in Fremont, and thanks to your great staff! Also thanks to the ACA which allowed me to buy an insurance plan which will cover all but about $500 of this whole adventure (when I went in, I was already at $3500 of my $4000 out-of-pocket max for the year, and I have no deductible.)

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The Shoe That Grows

April 5th, 2017 — 12:21pm

For several years I’ve been donating to a charity that I feel very strongly about: The Shoe that Grows. They have created a wonderful, sturdy shoe that can grow five sizes, and they give these shoes to kids in poverty. You can read about The Shoe That Grows here: https://theshoethatgrows.org/the-shoe.html

This week, the first week of April, is “Wear A Pair” week! They let us “Wear a Pair” for a week to raise awareness and get more donations. Here are my feet (with hand-knitted socks) in an Adult size pair.

IMG_3374

Here’s a photo of Henry’s foot on the left and mine on the right:

shoe2

If you’d like to donate this week, please visit my fundraising page:
https://fundraise.theshoethatgrows.org/fundraiser/935099
$1, $5, $10 — whatever you can afford — will help a child in need to be healthier and happier!! Thank you so much :)

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S-town podcast

March 28th, 2017 — 10:36pm

The new offering from the creators of Serial:

https://stownpodcast.org

If I mention it here, you know it’s good.

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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.

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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.

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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!”

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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.

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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 :)

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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 :)

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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!

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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!

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