Category: 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.


(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


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

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


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.


It’ll get better someday.

11 comments » | Blog


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:

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:

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

You Must Remember This Podcast

August 9th, 2016 — 7:00pm

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.

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!

1 comment » | Blog

me again

August 9th, 2016 — 6:26pm

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 :)

3 comments » | Blog

End of June already?

June 28th, 2016 — 12:38pm

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.

9 comments » | Blog

1000mcg of Uptravi

May 15th, 2016 — 10:28am

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.

6 comments » | Blog

aspercreme and ice cream

May 11th, 2016 — 9:18pm

Thanks to a commenter on a post below, I tried Aspercreme on my strange sore arm muscle (side effect of Uptravi) and it really really helps! Sometimes I rub it on the back of my neck when I have a headache and it seems to help with that, too. Amazing stuff. And cheap. The generic Target brand is like $3 for a big tube.

My nurse said to try to eat 500 calories before taking my morning Uptravi to help with the nausea and headaches. Ugh. I don’t eat breakfast. For a few days I tried to choke down a big bowl of yogurt and granola and fruit, and it did seem to help a bit, but it is hard to eat that much food when I’m not hungry and I would wake up dreading it. So then I though, hmm, how can I ingest a maximum of calories with a minimum of effort? Ice cream! Ice cream to the rescue! I now eat a small bowl of Trader Joe’s coffee ice cream every morning and it really seems to help with those side effects. I just have to manage to sneak it into my room before my 2-yr-old niece sees me. :)

Since all of my side effects are under control, I increased to 1000mcg of Uptravi on Monday, two days ago. As usual, I had nausea the first night and then some extra fatigue since then, but nothing unmanageable yet. But it took a week for the 800mcg side effects to kick in, so cross your fingers!

p.s. I got used to the Flonase and now it is my best friend.

4 comments » | Blog

Side-effect round-up

April 30th, 2016 — 2:22pm

I was doing well on Uptravi until I had been on 800mcg for almost a week, and then the side effects hit.

Nasal congestion and bloody noses. Lots of nausea and diarrhea. Lots of headaches, both prolonged and painful. I had a mild one for 36 hours, and then a few days later I had one so bad it made me cry. I’m only allowed to take Tylenol for pain and it has no effect on my headaches. My doc offered to let me try Tramadol, but it’s an opioid and I know from experience that opioids make me panicky and nauseated. No thanks.

My doctor prescribed Flonase for my nose, ondansetron for nausea, and Imodium for diarrhea.

Ondansetron is good stuff. I’ve only had to use it three times, but it really does seem to clear up the nausea and I haven’t noticed any side-effects.

Imodium really helps my poor stomach, though it makes me extremely fatigued and sleepy. I don’t have to take it often, but when I do I try to take it at night and even then I have fatigue and sleepiness all the next day.

I have a love/hate relationship with Flonase. For the first three days it was a miracle drug. I could breathe easily through my nose again, all the time, and my life-long post-nasal drip even cleared up, so that when I feel well enough to record a chapter I don’t have to edit out 400 throat-clearings! It’s so amazing!

However, after three days I had a terrible bout of insomnia. Only got four hours of sleep and my mind was racing racing racing all night. Restless legs, too. I didn’t make the connection right away and I was pretty panicked, thinking that my horrible insomnia was back, which I had my whole life (I’m not kidding, I had terrible insomnia even as a very small child) until I started to get my depression and anxiety under control a couple of years ago.

But then I realized that it might be the Flonase and I asked my doctor, and she said yeah, the steroids in it might make me feel amped up but that I would probably get used to it after a while.

So my choice was: breathe through my nose, or sleep?

I opted to cut down to a half-dose of Flonase for a few days and see if I got used to it. Half a dose worked better than none, and the insomnia got gradually better. I’ve been taking a full dose now for a few days and, though I do have more racing thoughts than I’d like, and my legs are still very restless, my sleep is acceptable again. I trust it will get back to normal soon.

Because of all these side-effects (and side-effects from the meds to help with the side-effects) I’ve stayed at 800mcg of Uptravi for three weeks, and will stay there for at least one more week because next week I’ll be switching from Revatio (12 tablets a day) to Adcirca (2 tablets a day) and, though they’re the same class of drug, my doc doesn’t want there to be any confusion if I get side-effects from the new stuff.

Oh also I have a sore muscle in my upper right arm. I might have simply hurt myself, or it could be the Uptravi. “Limb pain” is a possible side-effect. How weird is that?

In general I’ve been feeling rotten just about all the time, but TODAY, for some reason, I feel pretty good. I got a decent night of sleep and I had enough energy to record two more chapters of Dracula. Time to lie down now, though. I can feel another headache coming on.

(Did I mention that I’m recording Dracula? Don’t remember. I gave up on the children’s history of Germany because it was deadly dull and poorly written, and switched to Dracula because I love it and I noticed we didn’t have a solo recording at Librivox yet! I’ve done 8 chapters so far.)

4 comments » | Blog

Delicious Curry

March 22nd, 2016 — 9:07am

I’ve been making variations on this curry dish for years, changing this and that. Last night’s version was especially good so I thought I’d better write it down.

Half an onion
Four handfuls of baby carrots, cut into nice bites
A 10-oz sack of sliced mushrooms
One whole cauliflower, cut into nice bites
About half a sack of frozen peas
Optional: about two cups of cubed cooked chicken (I used leftovers, but you could cook some chicken or beef before you start the veggies)

Start the onion and carrot cooking in some oil before you add the other veggies. When the onion is soft and the carrots are partly cooked, add the cauliflower and mushrooms. Stir them around for a bit, then add a cup of water and cover the pot.

While they cook, whisk the sauce together:

Two cups of chicken or beef broth
One cup of sour cream
Two teaspoons of curry powder
Three tablespoons of cornstarch.
salt to taste

When the veggies are about half done (check the cauliflower), add the sauce, peas, and chicken to the pot. stir all around, cover, and cook on low, uncovered, until the sauce is thick and the veggies are done. Check the salt again. Serve over rice.


5 comments » | Blog, Recipes

Uptravi update

March 20th, 2016 — 9:26am

My first week on Uptravi went well. Side effects were: nausea the first night, uncomfortable enough to keep me awake in the middle of the night for a couple hours. Slight nausea all the following day, but none after that. Diarrhea the next day. Then just general gastro-intestinal oddness for the rest of the week. Bloating, and just not-quite-rightness. Nothing terrible, nothing intolerable.

I felt more out-of-breath than usual all week, probably because I was allowed to stop breathing Tyvaso but the Uptravi hasn’t reached a therapeutic dose yet.

It was wonderful, wonderful, not to have to breathe Tyvaso anymore! I have this internal clock that goes off four times a day. “Time to breathe your horrible Tyvaso,” says my brain, but “Ha!” I say to my brain, “I don’t have to anymore!!” No more endless painful coughing, no more headaches, no more feeling ill and needing to lie down, not more turning red in the face.

On Friday the 18th a nurse came to check on me and gave me the OK to increase my Uptravi to 400mcg twice a day. The first night I had nausea again; today is the second day so we’ll see… I imagine that each step up to a higher dose will affect me in a similar way, and I doubt very much if I’ll get any of the other common side effects, such as jaw pain, limb pain, joint pain, headache, dizziness…

Because I don’t spend my whole morning coughing from my first dose of Tyvaso anymore, I’ve been able to get some recording done first thing before the house gets noisy. I recorded four chapters of Young Folks’ History of Germany, so that’s 12 of 50 finished, and just now I did two chapters of Betsy and Tacy Go Over the Big Hill.

Comment » | Blog


March 13th, 2016 — 9:51am

I’ve just started a brand-new Pulmonary Arterial Hypertension medication called Uptravi (selexipag). It’s replacing the horrible horrible Tyvaso that I’ve been on since 2011.

Tyvaso is inhaled through a nebulizer four times a day. My dose was 18 breaths (4 times a day) and it was awful awful awful. Every breath made me cough ferociously, and the whole process left me exhausted, drained, and headachy every time. Up till now it was better than the alternative, which would be an infused medication delivered via a permanent IV pump with all the associated risks — infection, blood clots, etc. I /really/ didn’t want to deal with that, so I stuck with the Tyvaso.

Uptravi, which is the same basic type of medication as Tyvaso but delivered via tablet, was just approved by the FDA in December of 2015 and went on the market in January 2016. It took a long time for my insurance company to approve it, and for everyone to give me permission to start it, but two days ago, Friday March 11, I finally took my last Tyvaso treatment and started my new Uptravi!

Uptravi has a lot of terrible side effects, naturally, and can be hard to tolerate, so there’s a very slow titration process. They sent a nurse to my house to walk me through it and give me all the warnings in person. I started at 200mcg morning and evening (12 hours apart). Then after a week they’ll send a nurse out to check on me. If everything is good, I’ll go up to 400mcg for a week. And so on, until I reach 1600mcg “or the highest tolerated dose”.

I had some bad nausea the first night but no side effects since then. It’s so amazing to finally get away from Tyvaso and I’m incredibly grateful to the scientists who keep inventing new treatments for my terrible debilitating rare incurable illness.

They’re not really sure if Uptravi will make me feel better (every PAH patient reacts differently to medication), but it should slow the worsening of my condition. And I won’t be coughing all day!

In other medication news, I’ve switched from Tracleer to the newer, less-potentially-deadly Opsumit and also started Digoxin to help my heart beat slower and stronger. Also I’ve gone up to 20mg of Lexapro and it’s amazing. I don’t feel anxious and depressed all the time anymore! If you have anxiety and/or depression, please don’t be afraid to try some meds in addition to talking with a really good therapist.

I recorded another chapter of “Young Folks’ History of Germany” this morning :)

15 comments » | Blog

Upside Down and Inside Out

February 12th, 2016 — 3:00pm

OK Go has made another mind-blowing video! It’s for one of my favorite songs from Hungry Ghosts, too.

Facebook (yuck) gave me this embed code but it’s not working, so just click the link:

OK Go – Upside Down & Inside Out

Hello, Dear Ones. Please enjoy our new video for "Upside Down & Inside Out". A million thanks to S7 Airlines. #GravitysJustAHabit

Posted by OK Go on Thursday, February 11, 2016

And here’s how they did it:

Amazing and beautiful.

1 comment » | Blog

checking in

January 24th, 2016 — 8:21pm

Hey all, I’m still here. We moved, and then there were holidays, and then I had a bad spell of depression, and then some medical stuff. But I’m ok. Thanks for the nice email to check on me, Suraya :)

Early in January I started recording “Young Folks’ History of Germany” (1878) for Librivox but then I had some health stuff get in the way. I hope to get back to recording soon. Need to get back to “Betsy and Tacy Go Over the Big Hill” too.

I just read “Did You Ever Have A Family” by Bill Clegg and it blew me away.

5 comments » | Blog

moving again, and road trip

November 8th, 2015 — 7:39am

K&M found a bigger rental house closer to their work, so we are moving in a couple weeks. It’ll be hectic, but by December we should be settled.

Sorry there haven’t been any new recordings lately. I’m still working on “Betsy and Tacy Go Over the Big Hill” but things have been busy so I haven’t had a chance to record a new chapter in a while.

Right now my anxiety is pretty bad (moving and a bunch of medical stuff) but generally it’s been better lately. My lovely new psychiatrist Kory increased my Lexapro to 10mg, and I’ve had entire days where I don’t feel anxious AT ALL. Kind of amazing, and made me realize that there must be people whose normal state is “not anxious”. A revelation. All my life I’ve thought that everyone else felt like me, in a constant state of greater or lesser anxiety (coupled with bouts of depression, of course), and I didn’t realize that there was a different way to feel.

Henry and I took a little road trip on Friday. We drove out East to Calaveras County, where I lived from 1975-1979 (age 5-10). I wanted to show him how beautiful it is out there, and also how odd my life was :)

We took the 80 through Sacramento to the 16 and then the 49. We stopped in Jackson first and had lunch at the Mother Lode Deli (great sandwiches!), then went to a museum and had a wonderful detailed demonstration of some working, 1/10 scale gold mining structures. And we stopped at the very important Jackson Library.

Then on to Mokelumne Hill (aka Moke Hill). I showed him the little shopping center where my parents ran a shop, and we went to the Moke Hill grade school, where I attended 4th grade, to see if they had a 1978-79 yearbook but the nice office lady couldn’t find anything earlier than 1998.

Then we drove around town a little bit and checked in to the Hotel Leger on Main Street. It’s a funny, creaky old place, but comfortable and quiet with the nicest staff you can imagine.

We rested in our room for a few hours, then had a fantastic dinner in the hotel’s dining room. Then a good sleep, then a fantastic breakfast, and then we drove down the narrow, twisty, terrifying one-lane mountain roads (Jesus Maria and Worden) to get as near my old house as we could. The house itself is behind a gate and down a long private dirt road and I didn’t want to get shot for trespassing, so that was as close as we went! Then we continued down Whiskey Slide Road to Mountain Ranch. The general store, Senders, is still there.

Then down Sheep Ranch Road, another scary one-lane mountain road, to get back to route 4, which took us to Big Trees State Park. We parked and took the gentle 1 1/2 mile North Grove Loop path and marveled at the beautiful trees. I was completely worn out about halfway through, but we went slowly and rested often and I made it back to the car.

Then we dove down the 4 back through Stockton and home. It was a great trip. Henry is the BEST traveling companion!

Here’s a small album of photos:
Henry took TONS while we were driving, but I don’t have those yet.

3 comments » | Blog

Treasure Island

October 19th, 2015 — 5:36pm

Hey I finished my solo recording of Treasure Island:

It’s a great story. Enjoy!

5 comments » | Audiobooks, Blog

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