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So. I had a pulmonology appointment a couple weeks ago. I’ve been going downhill for the last few months (constantly exhausted, much more short of breath with even the slightest exertion, need more supplementary oxygen) so I expected some bad news, but yikes. Hearing it out loud was rough. Doctor says I have a year left, maybe two if I’m lucky. Let’s split the difference and call it a year and a half. So I’ll probably be dead by the end of 2020. Blah. I was in a horrible black depression for a few days but then I pulled out of it. My therapist, Suzanne, is an angel and a goddess and a true healer.

I decided to spend my time doing exactly what I please, to the greatest extent possible. I’ve had a huge burst of creativity lately. One of my huge regrets (this is gonna sound odd) is that I don’t have much more time to sew on my beloved Singer Featherweight, so I’ve decided to slow down on the sock-knitting and baby-clothes creation, since those things get lost, wear out, and get outgrown, and turn instead to quilt-making. Quilts last virtually forever, are useful and beautiful, and never get lost or outgrown.

I haven’t done much quilting in the past. About sixteen years ago I made a beautiful queen-size hand-quilted Monkey Wrench quilt for Dan, and maybe eight years ago I made a simple tied comforter for Henry, but that’s it for my quilting experience. I enjoyed the actual construction, but did not enjoy not figuring out how much fabric to buy, the cutting of large yardage into small precise pieces, nor the hand-quilting, which is the reason that Henry’s comforter is made of big squares of two alternating fabrics and simply tied instead of quilted.

Well! When I started googling for quilting techniques etc., I discovered the Missouri Star Quilting Company. They sell beautifully coordinated, high-quality quilting fabric which you can buy by the yard but also in pre-cut bundles of a few basic shapes that you can then cut into the smaller shapes you need AND they have hundreds of friendly tutorial videos for inspiration. (And they tell you exactly how much yardage you need!) Their fabric is expensive but “you can’t take it with you”, eh? Thanks for funding my new quilting obsession, Mom :)

I am now well-versed in the language of the “Jelly Roll” (a bundle of 40 strips that are 2.5″ by 42″ in beautifully coordinated prints or solids), the “Layer Cake” which is a stack of forty 10″ squares, and the “Charm Pack” which is a stack of forty-two 5″ squares.

The first quilt I made was for Steve. I drove to JoAnn’s fabric and craft store the morning after my hideous doctor appointment and distracted myself by choosing everything I needed to make his quilt. I made a few big blunders while creating it but it all turned out fine in the end, mostly because I am BAD at planning ahead when crafting (I’m a crafting improv girl) so I ended up with a bunch of extra blocks, counterbalancing the blocks I ruined with my first (failed) attempt at free motion quilting. :) Need more practice! So I switched to straight-line quilting with my even-feed foot and it all went smoothly after that. Photo time:

I cut my fabric into squares. I think they were maybe 7″? I can’t remember. Then I matched each blue square with a creamy-yellow square and sewed them together around all four sides. Then I sliced each square diagonally and pressed the resulting “half square triangles” open. Look at me, with the quilting jargon. Then I sewed these together into “Hourglass” blocks:

Then I sewed four of those together to make big blocks. This block probably has a name but I don’t know what it is. Do you? It’s similar to “Ohio Star” but not quite.

I squared them up and laid them out on the floor to make sure it would look nice:

I sewed the big nameless blocks together into long strips (not pictured) then layered those strips with batting (doubled unbleached cotton batting, only the best natural fibres for my loved ones) and backing (which was a flat sheet that I never use), then machine-quilted them along all the straight lines…

…stitched the fronts of the long strips together, then flipped the quilt over and sewed the back together by hand…

…then added a “double binding” (Jenny’s tutorial was the best), which is sewn around once by machine, wrapped around the edge to the back, and finished by hand. I enjoyed this part especially much! I’d call it ladder stitch or slip stitch, but googling those terms gives you a crazy assortment of different stitches. Here’s the Correct Method:
https://joyoushome.com/how-to-slip-stitch-quilt-binding-the-right-way/

And, finished! Not pictured: I wrote a care label on white muslin with a fine-point archival waterfast pen and stitched it by hand to the back. It has my signature on it so Steve can take it to the Antiques Roadshow someday when I am remembered as a beloved, world-famous audiobook narrator and show it off :)

It took 15 days of pretty intense work and it REALLY distracted me. I bet this post distracted you a little too, huh? :)

oxoxoxoxox

Here’s what I did last weekend:

Pattern: Blackwood Cardigan from HelensCloset.ca (Size 10)

Fabric: Plum-colored cotton/bamboo/spandex fleece from Mood Fabrics
(Christmas gift!)

It took a lot of courage to cut into the fabric. It’s by far the most luxurious fabric I’ve ever worked with — thick, drapey, and crazy-soft; it’s softer than a kitten, seriously. I made a practice cardigan first, just to be safe. (Yellow, see previous post)

Here are the pieces cut out

Here are pockets pinned in place with temporary tissue paper backing for stability

And a pocket sewn. I did all the top-stitching on the Featherweight; even though it isn’t zig-zag it’s fine because those areas aren’t under stress. The fabric was so much loftier than I’m used to that I slid off the pocket edge a few times. Oops. But no one will ever notice :)

And, finished!

It’s a simple, straight-forward, well-designed pattern. The instructions are clear, as is usual with Helen’s patterns, and it’s not much of an exaggeration to say that it took longer to cut the fabric than to sew it together! The design includes extra-long sleeves that bunch up adorably or can be pulled over the hands for warmth, but because my arms are extra-long the sleeves on my yellow practice cardigan weren’t long enough to suit me. I added about 3/4″ inch of length to the sleeve and an inch to the cuff (which is doubled so it’s actually only 1/2 inch longer).

All seams sewn on the serger; all topstitching sewn on the Featherweight (straight-stitch).

It’s a perfect replacement for my ancient worn-out Target cardigans. The fit is excellent and the fabric is cozy and quite warm; it blocks the wind better than I was expecting. I’ve worn it every day since I made it :) Extremely proud of myself.

As promised!

My Grandpa bought this Singer Featherweight sewing machine for my Grandma in 1951. I know the exact year because it has a special Centennial badge on it, as described in this post:
https://singer-featherweight.com/blogs/schoolhouse/centennial-1851-1951

This photo shows the original instruction booklet and all the accessories:

The funny-looking thing is a buttonhole attachment. This machine only sews a straight lockstitch, forwards and backwards — no zig-zag or other fancy modern stitches. The buttonhole attachment actually moves the fabric back-and-forth under the needle while sewing. Amazing. You can see it in action in the first video here:
https://singer-featherweight.com/collections/attachments/products/buttonholer-attachment-vintage-singer.

At some point over the last SEVENTY YEARS, Grandma lost one of the buttonhole cams and the TINY black screw that holds the feed-cover in place, but the wonderful singer-featherweight.com sold me vintage replacements for these parts for just a few dollars! From them I also bought motor lubricant (specially formulated for this machine), a pretty little matching seam guide, which you can see attached to the machine in the first photo, and a thread guide for modern cone thread.

I have set my big modern Pfaff aside and am attempting to do all my sewing with just my serger and the Featherweight. It’s sort of challenging because I sew with knits a lot, which usually require a zig-zag stitch; however, with the serger for stretchy seams I’ve been managing ok. In the 70s Grandma bought a little zig-zag attachment for the Featherweight. It doesn’t work perfectly, but I think it might be good enough for the occasional hem. I need to experiment a bit more.

Here are a few of my recent sewing projects. Sorry for crappy selfies — I no longer have Henry at my beck-and-call for photographer duty :)

Practice Blackwood Cardigan (before I cut into the luscious plum-colored cotton/bamboo/lycra fleece that Steve gave me)

My third pair of Avery Leggings. This adorable striped cotton/lycra is from The Fabric Fairy:

Underlovelies, sewn without a zig-zag! I stretched the hell out of the elastic while sewing it on with a straight stitch. Worked great! Pattern is from Klimpergross. I’ve sewn about 6 pairs so far and I love them. Elli sent me the fabric, and she also gave me all three Klimper books over the past few years. Wonderful Elli. <3

This suit for Lulu is made of two layers of cotton flannel. So thick and warm! Pattern is based on Babyanzug from Kinderleicht. The matching cap is Ohrenklappenmütze by Schnabelina.

This little flannel jumper for Lulu has extra-long straps with extra snaps for growing room. Pattern is based on the Mikey Strampelhose.

Ok! How’s THAT for a real blog post? With photos, even! :)

Ugh, the longer I go between posts, the harder it is to get started again.

It’s 2019 and the world has an entirely new crop of Public Domain literature! I can hardly believe it. When we started LibriVox, only books published before 1922 were legal for us to record, but finally we get an extra year of stuff, so everything published in 1923 is now fair game! And if the laws don’t change, next year we will be allowed to record things from 1924. Unbelievable. We were so sure they’d change the laws to restrict the Public Domain further, rather than allow anything new to be released so this is incredibly exciting.

My health: Getting worse. All the migraines and other side effects forced me to drop my Remodulin dose back down to 0.038 mL/hr, so my shortness of breath is worsening and I need more supplemental oxygen and I’m ever more exhausted. Ah well. At least I’m still here. I have a new therapist, Suzanne, whom I love! She’s young and enthusiastic and sweet and so helpful.

My family: Henry, Jayla, and Lulu (Annaliese) have moved to Vancouver Washington! I’m so excited for them. They’re staying with Dan for a few weeks while Henry works and earns enough money to get them their own apartment. Cost of living is much better up there so they should actually be able to afford their own place, which would have been impossible in the Bay Area. I’m quite envious of their rain and trees and I can’t wait to visit once they’re settled.

My Life: On weekdays I pick up Em from school and ferry her to her wonderful after-school care at my friend Uwimana’s house. Uwimana’s daughter is Em’s dear friend so it is perfect. And then I pick her up again at 5:30 and give her dinner and spend some Em-and-Kara time with her till her parents get home. She’s an incredibly kind-hearted, empathetic, creative, artistic, sweet-tempered, bright little person and I adore her.

I’ve been playing Stardew Valley on the Switch; and on iOS my current favorites are Clash Royale, Pocket City, I Love Hue, and the Cryptic Crosswords apps from Teazel.

I Love Hue, in particular, is a very special game, unlike anything I’ve ever played. It is gentle and calming, with no timers or punishments of any kind. There are hundreds of levels — I’ve been playing for months and am nowhere near the end — and now that I’m at the very advanced levels I’m able to sort colors that are almost identical. It’s astonishing what the brain can learn to do.

Speaking of learning, I gave up on online MOOC courses ages ago, because what the PAH and all the meds and everything my short-term memory is shot. HOWEVER! My ability to learn languages seems to be relatively unaffected! That bit of my brain must be extra-strong. I improve in German all the time. I’m reading familiar novels with relative ease, and just last night I noticed that I don’t always need to translate into English in my mind. I just… understand the German. Sweeeeeet. Also I’m working through the Italian course in Duolingo, at least two lessons a day. Today is my 137th consecutive day.

OK enough for now. Next time I’ll tell you all about my new Prize Possession — my grandmother’s Singer Featherweight sewing machine!

Oops. Big gap, there. I had a couple months of nearly constant ferocious migraines. Back in September I raised my dose of sub-q Remodulin because my PAH is worsening, and one of the (many) side effects is migraines… But the headaches have finally calmed down now, knock on wood. I need to raise my dose again because I’m still sliding downhill, but I’m gonna wait till after Thanksgiving.

I got a nifty little iphone app called Migraine Buddy which helps you track your headaches, triggers, sleep, symptoms, pain location, etc. It’s really friendly and useful, and I recommend it if you are a migraine sufferer too.

Thanks to a twitter thread about women in podcasting, I discovered a fantastic new podcast: TheAllusionist.org. Here’s the episode I started with:
https://www.theallusionist.org/allusionist/convalescence:

When you’re feeling unwell, what’s the book you read to make yourself feel better? And why does it work?
Clinical psychologist Jane Gregory explains why she sometimes prescribes novel-reading to her patients; and academic Guy Cuthbertson tells how post-WW1 Britain was soothed by Agatha Christie’s murder mysteries.

After listening to that one, I went back to the first episode and have almost caught up to the present day. I love love love Helen’s style. My other two favorite podcasts (http://www.youmustrememberthispodcast.com and http://historyofenglishpodcast.com) usually come in at about an hour per episode (the longer the better, if you ask me) but The Allusionist usually comes in at around 15 minutes — so give it a try if you want something short and brainy!

That’s enough for now — more soon. I’ll tell you about the things I’ve been sewing, knitting, reading, and watching! :)

Brand new, and full of cheerful family noise :)

You can subscribe to this book as a podcast and download all the chapters at once. Copy this rss link and paste it into your podcatcher:
http://kayray.org/audiobooks/lion_witch_wardrobe.xml

The Lion, the Witch, and the Wardrobe

You can stream these chapters non-stop from here:
https://archive.org/details/kayrayreadstoyou6

01 Lucy Looks into a Wardrobe
02 What Lucy Found There
03 Edmund and the Wardrobe
04 Turkish Delight
05 Back on This Side of the Door
06 Into the Forest
07 A Day with the Beavers
08 What Happened After Dinner
09 In the Witch’s House
10 The Spell Begins to Break
11 Aslan is Nearer
12 Peter’s First Battle
13 Deep Magic from the Dawn of Time
14 The Triumph of the Witch
15 Deeper Magic from Before the Dawn of Time
16 What Happened about the Statues
17 The Hunting of the White Stag

A new recording for you! Lots of cheerful family noise in this one, folks :)

Here’s a brand-new feature: you can subscribe to this book as a podcast and download all the chapters at once. Copy this rss link and paste it into your podcatcher:
http://kayray.org/audiobooks/beezus_and_ramona.xml

Beezus and Ramona, by Beverly Cleary

01 Beezus and Her Little Sister
02 Beezus and Her Imagination
03 Ramona and Ribsy
04 Ramona and the Apples
05 A Party at the Quimbys’
06 Beezus’ Birthday

Henry had one of his short stories accepted for publication on Rue Scribe, the online “small literature journal” of Underwood Press. I’m so proud I could burst.

https://underwoodpress.com/ruescribe/2018/07/15/the-crab-by-henry-frigon/

It’s such a lovely story.

Here’s a 5-minute recording of a children’s picture book in German. Can you guess what it is? I think you’ll recognize it by the time you get all the way to the end even if you don’t speak a word of German :)

No googling, now!

Gruenes Ei mit Speck

I have also created a page just for my recordings of picture books.

http://kayray.org/picture-books/

The pictures are half the fun, so please try to buy or borrow copies of these books so that you can look at the pictures while I read to you. :)

I’ve been re-watching season 1 of The Bridge with Henry, and it struck me suddenly how many women there are on TV now, and in The Bridge especially, and how different that is from when I was a kid. I asked Henry if he remembers when Prime Time TV shows only allowed women to play 4 main roles: wife, girlfriend, prostitute, or victim, but he doesn’t. Thank goodness.

In The Bridge, we have Saga Noren, our beloved peculiar detective protagonist. Brilliant, strange, annoying, determined, confident, awkward. And here’s the thing: it’s not a big deal that she’s a woman. Remember Prime Suspect from the early 90s? DCI Jane Tennyson suffered no end of sexism and bullying for daring to be a woman doing a man’s job.

In Saga’s police department there are TONS of women doing all kinds of jobs, not just serving tea and filing papers. They’re not hot 22-yr-old blondes, either. Older women and younger women, slim and stout. (In the 4th season we have a middle-aged female IT expert!) There are female BOSSES and it’s not even remarked on. (Lillian, oh how I love Lillian and her skillful policework and people-managing, her trademark fluffy green scarf, and her kickass no-fuss haircut).

Women in The Bridge are running companies, committing crimes, tracing IP addresses, writing newspaper columns, and catching criminals. They’re not all pleasant people, which is as it should be; they are interestingly three-dimensional, thanks to the truly excellent writing on this show; and most importantly they’re THERE, in the foreground and background of every scene.

Thinking back on the TV of my childhood… Well there was I Love Lucy, of course! And The Dick Van Dyke Show had Laura and Sally. Edit: Cousin Jerry reminded me about Mary Tyler Moore! Yes!

Other than that… no important female characters at all on The Rockford Files. None on Hawaii Five-0. One main female character to about eight main male characters on M*A*S*H. None on The A-Team. None on Simon & Simon. None on Miami Vice.

We had Uhura and sometimes Nurse Chapel on Star Trek. Most of the time they opened hailing frequencies and pined for Mr. Spock (don’t we all), but SOMETIMES they Did Things and it could have been much worse, so props to Star Trek for acknowledging the existence of women.

How many male Looney Toons characters were there? Bugs Bunny, Daffy, Elmer, Porky, Yosemite Sam, Sylvester, Tweetie Pie, Pepe le Pew, the Coyote, the Roadrunner, Foghorn Leghorn, Bill and Sam… how many female characters? Uh. The old lady who owned Tweetie Pie? The female skunk forever fleeing her stalker?

My niece, who just turned five, loves a cartoon called The Octonauts, which seems to have a pretty even ratio of male to female characters, and they all Do Things. She also enjoys My Little Pony (which is not as ghastly as it sounds). It has mostly female characters! She loves loves loves the movie Totoro, which stars two sisters. (side note: the dad in Totoro is beautifully portrayed. He’s not the detached, distant dad of olden times but takes excellent loving care of his little girls while their mom is in hospital.)

So. TV in 2018 has remarkably more gender equality than it did 40 years ago.

Last year I tried a Spanish crime drama on Netflix (can’t remember the name). It had men, men, men, men, men, and then BOOM a female murder victim. I got all annoyed and turned it off, but it made me realize that even shows that are not as fair as The Bridge must be better than they used to be, or an example in the old sexist style wouldn’t have annoyed me so much.

(Having gotten this off my chest I’ll go back to watching Claws. I just started it and the first episode was a hoot. It’s about a handful of nail salon employees who get sucked into organized crime and so far the characters are GREAT. Hope it continues as it started.)

My gaming friend with cancer died a couple of weeks ago. I was worried that he’d be all alone, but his pastor (and good friend) was with him at the end.

Thank you again for helping to make his last few weeks so much more comfortable with your kind donations. He was incredibly touched and grateful to you all.

I’ve been on a huge (mostly foreign) crime drama kick. Some of my favorite series have been:

River (UK)
The Assassination of Gianni Versace (USA)
The Bridge (original Swedish version)
Trapped (Icelandic)
Below the Surface (Danish)
Unforgotten (UK)

And that’s only off the top of my head. I’ve watched lots that are more forgettable, and started a few that were unwatchable. But there are always more. I discovered most of them via the most amazing blog:

https://thekillingtimestv.wordpress.com

I’m on their mailing list, so every day I get several notifications of new blog posts. I love it that they let me know about upcoming series and start dates and other news. It’s a real treasure trove. And their reviews also give me an idea of which series I should probably skip, hahah. If you’re a crime/mystery/suspense fan, go and poke around on that blog!

I just found a very old recording of The Voyage of the Dawn Treader! I probably recorded it in… 2003, maybe? You can hear Henry’s little voice sometimes, and I’m guessing he was about eight. Enjoy :)

(all chapters can be streamed here sequentially:
https://archive.org/details/kayrayreadstoyou6)

01 The Picture in the Bedroom
02 On Board the Dawn Treader
03 The Lone Islands
04 What Caspian Did There
05 The Storm and What Came of It
06 The Adventures of Eustace
07 How the Adventure Ended
08 Two Narrow Escapes
09 The Island of the Voices
10 The Magician’s Book
11 The Dufflepuds Made Happy
12 The Dark Island
13 The Three Sleepers
14 The Beginning of the End of the World
15 The Wonders of the Last Sea
16 The Very End of the World

I got frustrated by the disorganized pile of audiobooks on my “Kayray Reads to You” page so I started making sub-pages by author. I’m not finished yet, but here’s a start:

Susan Cooper:
-The Dark is Rising
-Greenwitch
-The Grey King

Helen Cresswell:
-Ordinary Jack
-Absolute Zero
-Bagthorpes Unlimited
-Bagthorpes V. the World
-Bagthorpes Haunted

Elizabeth Enright:
-The Saturdays
-The Four Story Mistake
-Then There Were Five
-Spiderweb for Two: A Melendy Maze

Marjorie Flack:
-Walter the Lazy Mouse

Maud Hart Lovelace
-Betsy-Tacy
-Betsy-Tacy and Tib
-Betsy and Tacy Go Over the Big Hill

J.R.R. Tolkien:
-The Hobbit
-The Fellowship of the Ring
-The Two Towers
-The Return of the King

E.B. White
-The Trumpet of the Swan

*****************
There are a few books that don’t have their own page yet but I’ll get them done soon. I also plan to make a podcast feed for each author so that the books are even easier to download into your smart phone.

4/12/18 UPDATE: Overnight the $400 goal was met, the campaign is closed, and Matt’s pastor used the donations to pay Matt’s power bill. You guys ROCK. Thank you all so much. Matt is so grateful to have his electricity back on. <3 <3 <3
************************

I swore to myself that my next blog post would not be me complaining about my health.

So instead, I’m asking you to make a small donation to help a friend, Matt R. He’s a Clash Royale acquaintance, a nice guy, who is dying of cancer. He stopped responding to treatment so the doctors sent him home with a month or two to live.

Right now, he’s at home, alone, in bed, in pain, with no electricity. He couldn’t afford to pay his electric bill AND pay for his cancer treatments. His church has been helping but they are stretched thin, too, so his pastor set up a little fundraiser for him. He’s only asking for $400, which will help with bills and food.

Would you please make a small donation? Even a dollar would help.

Here’s a link to Matt’s paypal fundrasier:
(Goal met, link removed)

Thank you so very much for your generosity. It breaks my heart that he had to choose between meds and electricity.

Our healthcare system is broken, broken, BROKEN. Grrrr.

I’ve got bronchitis. Feeling dreadful. Been stuck in bed for almost a week. Cough cough cough.

I still haven’t found a reasonable solution to my sub-q remodulin adhesive allergy issues. It’s really strange. I’ve tried every adhesive known to man, and even if they don’t cause a reaction when tested on my arm, I still get a rash when I use them to anchor a remodulin infusion site. My hypothesis is that something about having the remodulin pumped into my body makes the skin around that area super-sensitive to adhesives.

I have managed to avoid a full-body breakout by changing sites and swapping thighs every three days, and using an even higher-powered steroid ointment, fluocinonide, on the “old” site. Not fun.

Anyway.

I went to UCSF for my quarterly pulmonology appointment on the 13th and they said that since I can’t get sub-q delivery to work I need to switch to IV remodulin, which is really scary. I very much don’t want a Hickman catheter hanging out of my chest so my doc suggested we try a PICC line in my arm instead, just to make sure IV remodulin works for me and get me used to the whole IV situation. He says a PICC line isn’t a good long-term solution because it needs to be changed every couple months, but there’s a brand-new treatment option under review by the FDA right now — a surgically implanted remodulin pump, refilled by syringe every three months — that MIGHT be ready to go by the end of summer. So it’s possible that I could use a PICC line to stay alive until the new implantable pump is ready to go. Maybe. Fingers crossed.

Meanwhile, bronchitis sucks. I saw my doc on Tuesday to be sure it wasn’t flu or something bacterial. He gave me an albuterol inhaler to help me breathe and said I should start feeling better in a week or so. Still waiting.

UCSF wanted to implant my PICC line next week but that’s on hold until I get over the bronchitis.

Hurry up, FDA.

Happy New Year and stuff.

I saw a really great allergist in December. We did some experiments and found that I was definitely allergic to the adhesive of my Cleo infusion sets (a little device that inserts and holds a catheter under my skin with a little plastic button that allows me to dock with my medication pump.)

It seemed that I was NOT allergic to the IV3000 dressing which is a very thin, sticky film that helps to hold the little infusion docking button in place.

So the first thing I tried was sticking the IV3000 stuff to my skin and then sticking the Cleo down on top of it. But my skin broke out right through the IV3000; I suspect that it’s porous and allowed the irritating Cleo adhesive chemicals to leach through to my skin.

So then I tried a square of plastic (cut from a Hydroseal shower guard) next to my skin with the Cleo on top of that, but my skin didn’t like to be next to non-porous plastic for days on end.

So then I thought I found a great solution: a double-layer of gauze next to my skin, then a square of clear plastic, then the Cleo infusion set (with the bad adhesive), and then the whole sandwich held in place with IV3000 dressing.

Worked for almost a month, but then a week ago I developed an allergic reaction, apparently to the IV3000 dressing. I switched sites to the other leg just to be sure — same problem.

GAHHHHHHHHHHH.

Starting this morning I’ve got a square of gauze, a square of plastic, and the Cleo infusion set, all held in place with some strips of paper tape. Which is not going to last long.

I just called the Accredo specialty pharmacy nurse, Angie B. She was super nice and sympathetic and is going to send me a variety of other kinds of adhesives and dressings and tapes on Monday. Steve suggested athletic tape, and while I was googling that I also found something called kinesiology tape — I’ll pick up those two tapes at Walgreen’s tomorrow and give them a try until my new dressings arrive on Tuesday.

Any other ideas? I need something flexible, sticky enough to stay in place for many days or weeks, non-allergenic, and THIN (so I can jab the catheter needle though it into my skin). Bonus if it’s just porous enough to magically let my skin breathe without letting the chemicals from the bad adhesive through… *eyeroll*

I was easing off of the hateful Prednisone and was almost all the way off when this new reaction started, so now I’m back on it, 5mg a day. Even that low dose makes me puffy and thirsty and irritable and hungry.

Thanks for all the sweet email and comments.

On Friday, exactly two weeks after my final dose of Prednisone, and with the Prednisone side-effects nearly gone, the full-body itch returned. My entire skin hurts. I don’t know if you’ve ever noticed, but in large quantities the “itchy” sensation is actually a special kind of pain that makes you want to claw your skin off with your fingernails…

So I started back up on the hydroxyzine and have been so groggy for the last two days that I can scarcely move. Groggy and itchy and in terrible terrible pain from the Remodulin infusion site I started on Thursday.

Now it’s very early Sunday morning, still dark, and I woke up from the itchiness.

I have leftover Prednisone so just now I broke a tablet up and took about 5mg. Dr. Nguyen told me he thought the itch would return, and that I’d need to be on a steady low dose of Prednisone (10 mg) but oh how I was hoping that wouldn’t happen. But here we are.

Dreading the return of the Prednisone side effects. Dr. Nguyen said they wouldn’t be bad on a very low dose. We’ll see. I’ll try to get an appt with him Tuesday (he’s out of the office on Mondays) and get an official prescription for whatever dose of Prednisone he thinks might work. Until then I’ll take 5mg a day and hope it keeps the allergic reaction under control.

I had three good days between the diminution of the Prednisone side effects and the return of the itch. I made dinners for family, babysat children, and recorded an audiobook. (see below) Three good days at the top of the rollercoaster and now it looks like I’m heading downhill again.

I don’t know how much more of this I can take.

Here comes a non-medical post for you. Enjoy ;-)

Walter the Lazy Mouse, by Marjorie Flack, is an old family favorite. “Have you seen my father and mother and sisters and brothers go by?” I gave a hardback copy to Rosie for her fourth birthday, and she adores it. We’ve all read it aloud to her over and over again, so I decided I should record it for her, and for you, too!

I’ve just finished it up and put all ten chapters into my podcast feed. There’s a link in the right sidebar somewhere, or you can search the iTunes podcast app for “Kayray Reads to You”, or you can go directly to
https://archive.org/details/KayrayReadsToYou6.

Or click ’em from here:

01 How Walter Mouse Lost his Home
02 How Walter Finds a New Home
03 How Walter Makes Furniture
04 How Walter Does Nothing
05 How Walter Learns to Swim
06 How Walter Teaches School
07 How Walter Needs His Coat
08 Danger in the Woods
09 How Walter Returns Home
10 Walter Goes Back to Mouse Island

I’m still alive! Thanks for all the sweet comments and emails, everyone :)

I saw my pulmonologist up at UCSF on Monday the 6th. Usually I take myself up to SF on the BART and the Muni, but I was so exhausted and in so much pain that Henry offered to drive me, thank goodness. They did a chest echo but I was in too much pain to do the 6-minute walk test. Yay, sort of. I hate the 6-min walk. Doc prescribed a 12-day course of Prednisone for the crazy rash. Prednisone is horrible stuff, but within 3 days my rash had calmed down a lot and continues to be better (except that I can’t stop picking at all the scabs). Not gone, but better. Tomorrow is my last day of Prednisone, so then we’ll see if it all starts back up again. Cross your fingers.

Prednisone has bizarre side-effects. My face swells up every night and I wake up looking like a full moon. For the first few days I had to pee every 15 minutes. Also, the increased appetite is NO JOKE; I’ve been eating like eating is going out of style. My vision is kinda blurry and my eyes are gritty. I feel wired, and I don’t sleep well at all. One night I woke up absolutely drenched in sweat — my sheets were actually soaking wet. Gross. But luckily that only happened once.

I’m also still on a high-powered antihistimine (hydroxyzine) which makes me feel groggy and dried-out. Lovely Dr Nguyen, my PCP whom I saw on Tuesday, told me to take them every 4 hours now instead of 3x/day to try to keep everything calm when I go off the Prednisone. He says if the rash comes back, and he thinks it will, we can manage it with a low dose of Prednisone. UGH. We’ll see how things go over the weekend…