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Because of my Pulmonary Arterial Hypertension I need extra oxygen, so I use an oxygen concentrator. These miraculous machines take room air, filter out the nitrogen, and feed me the remaining oxygen. My insurance company provides a stationary machine for me to use at home, and I have an Inogen One G3 for when I’m out and about (this is what I took with me to Portland). The at-home machine provided to me by my insurance company is huge, hot, power-hungry, and extremely noisy,  so it lives outdoors in a little cage with the cables fed through my  window.   My old machine only went up to 5 lpm,  which was good for many years but  last year I started to need a higher flow rate, so they sent me a bigger, hotter, louder, noisier machine that goes up to 10 lpm.  Looks like this, though I think my machine was a much older model because the oxygen supply company (CHME) that contracts with my poor-person state health insurance is just awful: Invacare 10. Ugh.

Well!  A couple months ago we doubled one of my hideous medications.  It took a long long time for me to notice any effects, but after I was vaccinated and when I realized I might feel well enough to visit Henry I did some experimenting and discovered that I’d be ok on 5 lpm again, which meant I could get along with just my portable for a couple of weeks.

So, as it seems I’m going to live a bit longer than expected (knock on wood), I decided to buy my own very expensive, very slick, small, quiet, energy efficient, at-home oxygen concentrator, also made by Inogen:  the Inogen At Home machine. (A million thanks to my mom for paying for it!!)

My new machine arrived yesterday and I set it up right away.  I was SHOCKED by how small and quiet it is.  It’s quiet enough to live in my room — I’m accustomed to certain level of medical machine background noise, and it’s well within tolerance. It doesn’t generate much heat.  And it’s so little!

Dreadful old machine: 18.4 x 14.4 x 26.4 and 53 lbs.

Glorious new machine: 7 x 13 x 16.5 in and 18 lbs!!!

Today when I wanted to keep Em company in the living room it was easy for me to scoot my machine closer to the door so my oxygen tubing would reach.

AND it seems to be much better at its job than the dreadful old machine.  I slept comfortably last night on 4 lpm, and in the daytime I’m ok on 2-3 (2 in the morning, 3 when I got tired in the afternoon)

While researching, I learned that one can chain oxygen concentrators together for higher flow needs, so my plan is to buy another Inogen At Home when I need more than 5 lpm, but because I can set it lower it will be longer until I need to do that.

I bought the lifetime warranty for my portable, and thank goodness I did because they’ve needed to replace it four times in six years. So of course I bought the lifetime warranty for my tiny new “big” machine too. I suggest you do likewise, if you’re in the market for oxygen concentrators. There is serious peace of mind when you know that if anything goes wrong, they’ll send a replacement machine almost instantly.

Oh! And one more awesome thing about it is that it’s user-serviceable, just like my portable. It has a little air filter that’s easy to wash once a week, and the columns that strain out the nitrogen are user-replaceable! It will warn me when they start to get full, and I just order a new set from Inogen and slot them in. $150, but well worth never needing to call surly, obnoxious, cigarette-smoking “did you try turning it off and then on again” techs from CHME (it’s hard to express how horrible my experiences with CHME have been. They seriously suck. You get zero stars, CHME.)

I sewed today! I used some red cotton knit and made myself a new Kirei Camisole. I thought I’d need to trace off a fresh copy of the pattern but when i dug through my pattern binder i found size M all ready to go. I wanted a little extra ease so I sewed 3/8“ side seams instead of 1/2“. All finished except for the hem and that can wait. Listened to a few episodes if the excellent Shedunnit Podcast while I sewed.

And then I read and read and read. Em joined me for a while which was so cozy and nice!

Also received and set up my fancy new oxygen concentrator! More about that tomorrow, if I remember…

It was a Tired Day, but that’s ok, my mood is fine. I just did a lot of nothing. Read my book, played on my phone, watched a show (The Flight Attendant), texted friends, made mac n cheese (Trader Joe’s brand).

You know, I think it took a full year for me to recover from my brain surgery. I’ve noticed feeling more like myself lately, in some indefinable way, and on April 1st it had been exactly one year. (It’s easy to remember getting emergency brain surgery on April Fools‘ Day!)

Today I had to run some errands but Em went with me, which made it much more fun. First we went to the UPS place to ship Lulu‘s little summer nightie. Em had brought one of her millions of My Little Pony toys,Twilight Sparkle, and she told me all about her recent breakup while we waited in line :D I love it that her female ponies all date each other.

Then we went to Target for Aspercreme, popsicles (I’m newly hooked on Outshine fruit bars), gold and silver paint, and a new popsicle thing, you know where you pour juice in and freeze it. Got the Aspercreme and paint, but they were sold out of popsicle makers and they don’t carry the Outshine flavors that I like (lemon, lime, and pineapple). So then we went to the dreaded Walmart. Ugh. I had never been there before and it was as ghastly as I’d imagined. No popsicle makers, but they did have lime and pineapple Outshine bars. Why doesn’t either store stock the lemon flavored ones? They both stock watermelon flavor — ewwwwww.

Then we came home and I played WoW for hours. Now I’m all tired out so I’ll watch some UK tv till bedtime. I think there’s a new episode of Bake Off: The Professionals, which isn’t anywhere near as much fun as real Bake Off but it’s pleasant enough.

Finished sewing a cool summer nightie for my Lulu. I used the pattern with which I made summer nighties for Em when she was four :) Thank goodness Past Kara remembered to note down seam allowances and skirt dimensions! I made the pattern by following this Craftsy tutorial:

https://www.craftsy.com/post/nightgown-pattern/

And here’s the result:

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So sweet. I might make one for myself :)

Went to a park and had a very nice chat with a friend this morning. Beautiful breezy sunny day! Saw a hummingbird sitting in her nest right above my head. In the afternoon I started Andy Weir‘s new novel, “Project: Hail Mary”. So good!

I’ve wanted to add some fun color to my hair for a while now, but I really love my natural red-blond, so I decided to try just a single streak to see how I like it. I bought the Cool Tone Sample Pack from Overtone just before I left on my trip to Portland. Today I washed my hair and when it was dry I gave myself a purple streak!

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How cute am I? :D I’m thrilled. It was expensive but there is enough color in each little pot for probably 4-5 streaks, and since I’ve trained my hair to go several days between washes the color should last a long time. The dye goes on like conditioner and smells delicious, like peppermint. No icky chemical smell, and it left my hair soft and shiny.

Thinking about adding a matching streak on the other side of my face…

Today was therapy day, yay!!! I’ve been in therapy for ten years. I started at twice a week for a few years, then graduated to once a week, and for the last six months or so it has been every other week. I’m incredibly proud of my improved mental health! Yes, I do still occasionally slip back into a depressive episode but they last for mere days or weeks now, instead of months or years. 2020 was admittedly hard. The brain surgery messed with my mood and it took about a year to fully recover, plus the whole, y‘know, global pandemic and my declining health. But here we are in 2021!

After therapy (wish I could decorate that word with hearts and sparkles, as I would in a text message) I stopped at the library to pick up my hold, Andy Weir‘s new novel, “Project Hail Mary”. I’m generally not a big sci-fi fan but I LOVED his first novel, “The Martian” and the second, “Artemis”, was also very good. And I got Allie Brosh’s first book, “Hyperbole and a Half” and I chose a couple of books for Em, too.

Exhausted and in worse-than-usual pain now. (Side effect of Remodulin is joint pain. It’s usually manageable but I ran out of Aspercreme. I’ll try some Tylenol.)

(Hello medication-spam robots! Your comments will never see the light of day so don’t even bother)

Last time I got all excited about a new, better subcu pump for my Remodulin (that implantable pump, if you remember), it came to nothing. They kept pushing the release date back and back and back (they promised 2017, then 2018, then 2019, then 2020… and it’s still not out in 2021), plus I realized that undergoing the surgery to implant it would be really difficult because of my severe adhesive allergy. *eyeroll*

But now there’s another new pump coming out, a tiny one, just a lil 2″ circle, and you refill it with pre-filled cartridges instead of pulling meds out of a vial and into a syringe, like I do now. Which isn’t as much of a hassle as it sounds, but it gets tiresome and it would be nice not to.

My doctor is having a meeting about it next week, and it’s supposed to be out by Summer. I mean, obviously I don’t 100% believe this… but maybe! It’s possible! It’s called the Remunity Pump. Look how tiny it is!

https://www.remodulinpro.com/pump-options/remunity

The video is funny. It’s one minute of talking about how great the new pump is, and seven minutes of talking about how horrible and dangerous my medication is. Lol.

I had a pleasant, non-eventful journey home. It’s lovely to go to bed in my own precious comfy bed, but I miss Henry, Jayla, and my darling Lulu. We ate so many cherries together! We read stories, and said “kuplink kuplank kuplunk” and pretended to be cherry trees and played Magic Sand for hours and watched “Let’s Go For a Walk” (wonderful BBC show for kids. We love Ranger Hamza!). We cuddled and snuggled and were so cozy. I hope to visit again in summer, or after the new baby is born, or both! Quick! While I’m still able to travel!

I’m on the train, homeward bound. I had a wonderful visit and I can hardly wait to go back. Maybe in summer!

Tonight I made my world-famous cauliflower cheese and everyone liked it!

Break up a cauliflower and steam till just tender. Put 4 tbsp of butter and 4 tbsp of flour in a little saucepan. Whisk together and cook for a minute or two. Slowly pour in 2 cups of milk. Keep whisking and cooking on low heat. Add about a cup and a half of good sharp cheddar, 2 tsp of mustard, salt, and a dash of cayenne pepper. Taste cheese sauce, adjust flavors. Put cauliflower in a baking dish, pour the cheese sauce over it, and bake at 400° F for 20-30 minutes or until it starts to brown. Omg so delicious!

I couldn’t find cayenne in Henry‘s kitchen so I used cholula hot sauce instead. Different than usual but still totally delicious.

Slept better, felt better, took a walk with Henry and Lulu in the cool damp morning. They live in such a nice neighborhood. A block from the Portland light rail system (The Max), quiet streets, trees and flowers everywhere. So green!

Henry printed out two copies of the Sunday NY Times puzzle and we worked it together, just as we used to when he was a teenager. Our brains are so similar, it’s crazy.

This afternoon I worked on the archive for this blog. When I started it in 2001, there was no such thing as blogging software (blogs weren’t even really a thing yet) and I hand-coded the whole thing in vi. I switched to wordpress in mid-2006 but up to that point everything was in a separate place on our server. Now I have FINALLY gotten all my posts from 2001 to early 2006 added to wordpress here. Click the “archive” link at the top and you can go back in time 20 years. Twenty years, jesus. I was 31. In the spirit of “finished is better than perfect”, the links don’t work because it was too daunting to go through and track them all down. Also there are no photos. You can always see the original posts with links and images by visiting
http://kayray.org/life/march01.php
and then you can make urls for the other pages by simply changing the month and year, e.g. feb05.php

Feeling very frustrated. My poor sleep last night led to crippling fatigue which kept me home while the others took Lulu to the park on this sunny Saturday afternoon. I wanted so much to feel well enough to go along :(

Didn’t sleep very well so I’m extra-tired today. I need to sleep propped up on Pillow Mountain or I don’t breathe very well, and last night I rolled off and had “I can’t breathe” dreams. Henry suggested that tonight we build walls on either side of my sleeping mat so that I can’t roll off. Smart boy.

This morning they went to the store for groceries and I stayed home and played a lot more Littlewood and enjoyed the quiet. When they got home we tried to watch some more Taskmaster but Lulu became too squirrelly so now she and Henry are playing with her wooden trains — the very same wooden Brio trains that belonged to Henry when he was her age, and which we lent to Em when she was small. Buy high-quality imagination-friendly toys, people, not plastic battery-operated junk!

I discovered a new favorite author. I enjoy the genre of “Women’s Contemporary Fiction” (aka “chick lit”, yuck) and up till now I’ve never found any authors who come close to the storytelling skill of Marian Keyes. I follow her on twitter (she’s a delight!) and she’s always recommending books that she loves. I tried one she suggested by Mhairi (Irish name, pronounced Vah-ree) McFarlane and wow! It was excellent! It went where I wasn’t expecting it to go in a very satisfying way, great characters, beautiful writing. Mhairi has written quite a few novels so I’ve been listening to them one after another on the library’s Libby app.

I played a TON of Littlewood today. It’s such a peaceful game. I just love it. It’s a cousin of Stardew Valley and Animal Crossing, but different enough to be its own unique game. Made by an indy gamedev, and only $15. I HIGHLY recommend it! Here’s the official trailer, and I’m sure you can find dozens of fulsome reviews too.

Also: why is grapefruit juice so good? It is far and away the Superior Fruit Juice (if you get the good expensive kind, that is).

Jayla made baked mac-n-cheese from scratch tonight, yum.

So tired today. Went to bed at 8pm in the broad daylight, hahaha

H & J live in apartment with windows that don’t open. I don’t mean they are stuck or broken — I mean they are literally not openable. It’s the strangest thing. There is just one openable window in the whole apartment, in their bedroom. Maybe required by law in case of fire? Every room has a built-in AC/heat/fan unit so at least there is fresh air but oh man that is not a replacement for breezes, birdsong, the sounds of traffic and rain… Fresh air comes at the cost of a whirring fan, too.

This apartment building is brand-new and cheaply built. Openable, screened windows are probably more expensive than a pane of glass that just sits there being clear. Ugh.

Their lease ends in December. I know their next place will have proper windows if nothing else!

It’s a tired day so I stayed in my room (Lulu‘s room) most of the day. I did fix breakfast for her (raspberries and yogurt), played with her kinetic sand, and read to her a bunch this morning while H and J were working.

Last night Lulu fell asleep early, worn out from our big day. So we had time for grownup TV, and I introduced Henry and Jayla to Taskmaster. So fun and silly! We watched the first three episodes of season 1 and laughed our butts off. It’s impossible to describe, so here’s the first episode for you to experience :D