Category: Blog

Singer Featherweight 221

January 25th, 2019 — 10:30am

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:

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:

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 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 Ohrenklappenm├╝tze 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! :)

3 comments » | Blog, Handmade

Happy 2019

January 24th, 2019 — 11:14am

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!

4 comments » | Blog

I’m still here!

November 20th, 2018 — 8:25am

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: Here’s the episode I started with:

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 ( and 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! :)

2 comments » | Blog

The Lion, the Witch, and the Wardrobe

August 27th, 2018 — 9:43am

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:

The Lion, the Witch, and the Wardrobe

You can stream these chapters non-stop from here:


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

3 comments » | Audiobooks, Blog

Beezus and Ramona

July 24th, 2018 — 7:48pm

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:

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

4 comments » | Audiobooks, Blog

The Crab, by Henry Frigon

July 15th, 2018 — 5:21pm

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.

It’s such a lovely story.

5 comments » | Blog

Gruenes Ei mit Speck

June 28th, 2018 — 6:19pm

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.

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. :)

1 comment » | Audiobooks, Blog

Women on TV in 2018

June 24th, 2018 — 8:23pm

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.)

5 comments » | Blog

Matt Robinson is gone

May 30th, 2018 — 9:03pm

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.

3 comments » | Blog

crime! crime! crime!

May 26th, 2018 — 11:29pm

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:

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!

4 comments » | Blog

new old audiobook for you

May 24th, 2018 — 11:13pm

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:

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

2 comments » | Audiobooks, Blog

Audiobook Organization

May 6th, 2018 — 11:54am

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
-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 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.

11 comments » | Audiobooks, Blog

please help my friend

April 11th, 2018 — 4:50pm

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.

Comment » | Blog


February 23rd, 2018 — 11:03am

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.


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.

10 comments » | Blog

Hello 2018 I am still itchy

January 26th, 2018 — 6:39pm

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.


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.

3 comments » | Blog

itchy again. GAHHHHHHH.

December 3rd, 2017 — 6:11am

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.

10 comments » | Blog

Walter the Lazy Mouse

December 1st, 2017 — 1:38pm

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

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


1 comment » | Blog

lots better

November 16th, 2017 — 5:08pm

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…

3 comments » | Blog

horrible allergic reaction

November 5th, 2017 — 7:54am

Guys, I’m having a really hard time.

This allergic reaction to adhesives has now spread over my entire body. I itch EVERYWHERE. My skin hurts and burns everywhere. It feels as if I’m wrapped in coarse sandpaper and have a terrible sunburn. I have scabs everywhere from scratching my skin raw. I look like I have the measles and have been attacked by raccoons.

On Friday it finally spread to my face and I woke up with my face and eyes so swollen I could hardly see. It seriously freaked me out and I got worried that it might be a bacterial infection or something. I called my lovely primary care doc, Dr. Nguyen, and thank goodness he had an opening at 9am so I raced over to his office.

I explained the whole story to him, while sobbing, and he said it’s definitely not an infection, it’s definitely an allergic reaction either to adhesives or the meds themselves. He gave me a cortisone shot for quick relief and a prescription for even stronger antihistamines (hydroxyzine) that I can take throughout the day. By the end of the day my face was much less swollen.

The hydroxyzine helps somewhat — I’m still itchy but the pain is less. I can sleep through the night without waking myself over and over, scratching, but it makes me so drowsy all I can do is lie in bed and do nothing. Thank goodness it’s the weekend and most of my family is out of town so I have quiet and no childcare to do. Henry, Jayla, and Tiny Babe are here and have been keeping me company and bringing me food and water.

I just woke up (Sunday morning) and my face and eyes are swollen again. I guess the cortisone wore off.

Tomorrow I have the big trek up to UCSF to see my pulmonologist. Usually I’d take the BART and the Muni, but I’m such a wreck that Henry offered to drive me.

I’m barely even using any adhesives anymore — just a tiny bit where the catheter sticks to my skin, and I’ve even trimmed that back to the bare minimum. I don’t understand why the allergic reaction isn’t getting any better.

AND I need to keep switching infusion sites every few days; the allergic reaction is so extreme around the little bit of adhesive right there that my skin erupts in oozing sores and I need to switch to a new site, which means I have the new-site-pain to a greater or lesser degree at ALL TIMES and it never has a chance to settle down.

This has been going on since August. It’s November now and there’s no end in sight.

I am intensely miserable. This is really difficult.

5 comments » | Blog

Allergic Contact Dermatitis

October 7th, 2017 — 9:18pm

Guess what, I have a difficult new condition.

After the Urgent Care doc diagnosed me with Post-Injection Inflammatory Reaction at the infusion site on my left thigh, I figured I could start a new infusion site on my right thigh and be fine for another few months. NOPE. The itchy bumpy rash showed up in less than a week.

It was bad enough, oozy and itchy and gross, that I called Accredo, the specialty pharmacy that supplies my Remodulin, last Saturday. They have nurses on call 24 hours a day to help with medication and infusion pump issues. I described my rash to a nurse and she said it sounded like Allergic Contact Dermatitis — a reaction to all the adhesive tapes and dressing that I use to secure my infusion site and tubing and stuff. She described exactly what I’m experiencing and said she’s seen it often. She said to use the bare minimum of adhesives and to take antihistamines and wait for my body to chill out (I’m paraphrasing).

Welp, today is one week later and I’ve had to start yet another infusion site on my LEFT thigh because the one I started last week on my RIGHT thigh is too broken-out and oozy to tolerate. GAHHHHHHHH. This is quite awful because the pain of a new infusion site is most severe for the first week or two, and the goal is always to keep a site going for as long as possible. I managed 6 weeks once.

I’m sorry that all I seem to talk about here is my awful health conditions. Sometimes I feel like I am just barely making it from day to day what with all the crazy side effects and pain and all. Remodulin is still better than Uptravi or Tyvaso. Once in a while I feel good all day. I’ve been chronically exhausted lately but I’ll bet it’s partly down to the strain of this constant allergic reaction.

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