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.

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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.

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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.)

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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.

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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 :)

6 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!

4 comments » | Audiobooks, Blog

Betsy-Tacy and Tib!

September 4th, 2015 — 9:13am

Betsy-Tacy and Tib: the second 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, who are now eight years old, play just as well together as Betsy and Tacy did, and they never quarrel. They get into a little more trouble in this book, though!

You can find out more at the Betsy-Tacy Society:

I’m going to post the whole book here all at once; the chapters will be in my podcast feed three times a week, as usual, but I don’t feel like scheduling individual posts here to match.

Betsy-Tacy and Tib: 01 Begging at Mrs. Ekstrom’s
Betsy-Tacy and Tib: 02 Learning to Fly
Betsy-Tacy and Tib: 03 The Flying Lady
Betsy-Tacy and Tib: 04 The House in Tib’s Basement
Betsy-Tacy and Tib: 05 Everything Pudding
Betsy-Tacy and Tib: 06 The Mirror Palace
Betsy-Tacy and Tib: 07 Red Hair, Yellow Hair, and Brown
Betsy-Tacy and Tib: 08 Being Good
Betsy-Tacy and Tib: 09 The Secret Lane
Betsy-Tacy and Tib: 10 Aunt Dolly


5 comments » | Audiobooks, Blog

I have moved

September 3rd, 2015 — 9:11am

I have moved. Moving sucks. My killer anxiety got activated and I lost my recently-won ability to sleep a reasonable amount each night. I’m waking up between 4 and 5 every morning, and if I go to bed earlier, I wake up even earlier… I’m in a constant state of extreme sleep deprivation.

But I’m unpacked, and my family is lovely, and my room is great — I have a SE/SW facing corner window and my bed is in that corner, so I can lie in a puddle of sunshine and rest. And the air here is much much cleaner than in San Diego. My strange incurable puffy-eye condition cleared up immediately. I think the air pollution from living on a busy street must have affected my eyes.

I’ve started recording again! (There is a 2-year-old, but no constant stream of military aircraft and garbage trucks so it’s good trade, noise-wise) Betsy-Tacy and Tib is only 2 chapters away from completion and I’ve added the finished chapters to my podcast feed already. I’ll post the whole book here when it’s done but if you’re impatient you can find it here:

Thanks for all the nice comments and emails! I owe email to everybody….

3 comments » | Blog

moving day

August 12th, 2015 — 8:45am

Today is Wednesday. Mom is coming over today to help me pack of the last few things. The moving men are coming on Tomorrow. My stuff is in boxes, except for the stuff I need to take with me in the car. Sorry no recordings lately. STRESS. It’ll all be over soon though.

5 comments » | Blog


July 27th, 2015 — 8:52am

In early July I spent a week Bay Area with my sister K, her husband M, their 2-year-old daughter ER. (Henry is living there too, working as ER’s nanny) It was a lovely visit, and we discussed the plan we made when Henry moved up there early this year. The plan was that they’d find a bigger house to rent and I’d move in with them, because I really can’t live alone anymore. Too scary with my health the way it is; also lonely because I don’t have the energy to get out and do things with other people very often. But the “bigger house” plan hasn’t happened yet for various reasons, so they’re clearing out a room for me to live in and I’ll be moving up there in mid-August.

So I’m moving again! I’m really excited about living with my family, getting to spend time with Henry and ER before I get any sicker, having people around for company and support. And especially feeling useful again — I think I will really be able to make everyone’s life a little smoother by helping out in the little ways that I can.

It’s hard to leave my San Diego family, and it’s absolutely crushing to leave Jeff-the-therapist. Argh. He’s been helping me for almost four and half years, and now I’ll need to find someone new. It’s daunting and scary.

I’ve got a moving company hired and am packing the good stuff and giving unwanted stuff away. I have four doctor appointments and two car appointments this week.

I’ll try to record a new chapter of something soon! :)

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“This Country of Ours” is finished

June 29th, 2015 — 9:42pm

Bet you didn’t think this day would ever come. I sure didn’t. Eight years it took me to record this book! Jeepers.

This Country of Ours, Part 7:

Links to the other 6 parts on that page, or here:

My next LibriVox solo will be Treasure Island, yay! Pirates and parrots and adventure! I’ve got the first four chapters done already. It won’t take eight years this time ;-) Although my beloved but elderly laptop (mid-2011 Macbook Air) is having Serious Issues and it’s going into the shop on Wednesday so I won’t be able to get any recording done for a while. Boo.

Mood: up, down, up, down. Saturday was horrific. Sunday was ok; today was pretty good. Reading lots of Marian Keyes’s Walsh Family novels. Playing Capitals on iPhone. Listening to podcasts. Discovered a band called The Decemberists and I think I might be developing an unhealthy obsession for their song “The Infanta”.

The lyrics tell a story which is incredibly vivid in my mind. A vast slow-moving procession of nobles on elephants and camels. It’s hot, there are bright flags and sidelong glances, trumpet fanfares, cannon salutes, intrigue.

Meanwhile the little princess, the unwitting cause of all the commotion, is dreaming of a peaceful quiet lake.

Here she comes in her palanquin
On the back of an elephant
On a bed made of linen and sequins and silk
All astride on her father’s line
With the king and his concubines
And her nurse with her pitchers of liquors and milk
And we’ll all come praise the infanta
And we’ll all come praise the infanta

Among five score pachyderm
Each canopied and passengered
Sit the duke and the duchess’ luscious young girls
Within sight of the baronness
Seething spite for this live largesse
By her side sits the baron
Her barrenness barbs her
And we’ll all come praise the infanta
And we’ll all come praise the infanta

A phalanx on camelback
Thirty ranks on a forward tack
Followed close, their shiny bright standards a-waving
While behind in their coach, in fours
Ride the wives of the king of Moors
And the veiled young virgin, the prince’s betrothed
And we’ll all come praise the infanta
And we’ll all come praise the infanta

And as she sits upon her place
Her innocence laid on her face
From all atop the parapets blow a multitude of coronets
Melodies rhapsodical and fair
And all our hearts afire
The sky ablaze with cannon fire
We all raise our voices to the air
To the air…

And above all this falderal
On a bed made of chaparral
She is laid, a coronal placed on her brow
And the babe, all in slumber dreams
Of a place filled with quiet streams
And the lake where her cradle was pulled from the water
And we’ll all come praise the infanta
And we’ll all come praise the infanta

I even forgive them their mispronunciation of “infanta”.

If you’re obsessed with Mad Men, you’ll recognize the song from the opening montage in “Maidenform”, s02e06. Which is of course how I discovered it in the first place.

5 comments » | Audiobooks, Blog, Homeschooling

feeling better now

June 22nd, 2015 — 2:05pm

Thank you all so much for the kindhearted comments and emails. It means a lot.

I’m feeling a better now. I mean, my situation is still exactly the same but I’m managing to think about other things and the terrible terrible depression has lifted again and I am ok for now.

I’ve been working on a LibriVox recording of a US History book for kids — This Country of Ours. It has 99 chapters and is divided into 7 parts. I started recording it in 2007 and got the first 6 parts done within three years, but I started the 7th part in 2013 and it’s just been sitting there unfinished for ages.

LibriVox is doing a finish-up-lingering-projects drive in June, so I decided to get it done. Right now I have only 8 chapters remaining, so the end is in sight!

You can find the recordings here:
This Country of Ours: All Seven Volumes

In non-audiobook news, my cousin Chloe and I saw the new Pixar movie, “Inside Out” yesterday and it was so good! Chloe is one of my favorite people in the whole world and I love to spend time with her, plus the movie was excellent — beautiful and funny and sad and lovely. So that was really fun.

4 comments » | Audiobooks, Blog, Homeschooling


June 12th, 2015 — 2:29pm

so depressed. my pulmonologist told me i should apply for MediCare so that when I stop getting alimony in 2017 I will at least have health insurance, so I just looked into that. Turns out I don’t qualify for MediCare even though I am disabled because I don’t qualify for SSDI. I don’t qualify for SSDI because I was a housewife for the last 10 years or so and before that I was self-employed part-time and didn’t rack up enough social security credits in the allotted time. So basically the government won’t help me at all with anything and I will need to depend 100% on my family.

(I have a rare, incurable, fatal disease called Pulmonary Arterial Hypertension, which is why I can’t work and why I need excellent health insurance. My meds cost more than $40,000/month and I need tons of lab work and doctor visits.)

So there’s that.

11 comments » | Blog


June 7th, 2015 — 1:11pm

Betsy-Tacy: the first 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! The first book starts in 1897, when Betsy and Tacy meet, just before Betsy’s fifth birthday. (The series grows with the characters, so please don’t be put off by the relative simplicity of this first book.) You can find out more at the Betsy-Tacy Society: http://www.betsy-tacysociety.org/betsy-tacybooks

I’m going to post the whole book here all at once; the chapters will be in my podcast feed three times a week, as usual, but I don’t feel like scheduling individual posts here to match.

Betsy-Tacy: 01 Betsy Meets Tacy
Betsy-Tacy: 02 Betsy’s Birthday Party
Betsy-Tacy: 03 Supper on the Hill
Betsy-Tacy: 04 The Piano Box
Betsy-Tacy: 05 The First Day of School
Betsy-Tacy: 06 The Milkman Story
Betsy-Tacy: 07 Playing Paper Dolls
Betsy-Tacy: 08 Easter Eggs
Betsy-Tacy: 09 The Sand Store
Betsy-Tacy: 10 Calling on Mrs. Benson
Betsy-Tacy: 11 The Buggy Shed
Betsy-Tacy: 12 Margaret
Betsy-Tacy: 13 Mrs. Muller Comes to Call
Betsy-Tacy: 14 Tib

book jacket

3 comments » | Audiobooks, Blog

Trumpet of the Swan, ch 21

June 5th, 2015 — 8:00am

Chapter 21 (the last chapter)

The Trumpet of the Swan: 21 The Greening Spring

The Trumpet of the Swan

2 comments » | Audiobooks, Blog

Trumpet of the Swan, ch 20

June 3rd, 2015 — 8:00am

Chapter Twenty:

The Trumpet of the Swan: 20 Billings

The Trumpet of the Swan

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