Rough night

June 19th, 2021 — 9:07pm

Last night I had the side effect double-play of nausea and joint pain. Not enough to wake me thoroughly so i could do something about it, but enough to cause crummy sleep and a much-too-early morning. But I took a walk early this morning anyway! I do love summer mornings: low sun, warm air, cool breeze, birdsong. Lovely.

Tonight I’ll do my anti-anxiety writing exercise, and rub Aspercreme on my knees, and take extra nausea meds so I’ll feel ok tomorrow! Gotta find some Pokestops so i can get some Pokeballs so i can catch more Pokémon :D

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June 18th, 2021 — 10:47pm

Another very pleasant day. Took an early walk with Mom, watched some art documentaries together. Oh! And Henry mentioned to me that Pokeman Go had been updated to make it fun for us stay-at-home non-walkers, so I reinstalled it and sure enough, I caught TONS of Pokemons right from my bed. There’s a Pokespot at the far side of the loop I make when I take a walk, so I’ll spin it tomorrow morning :) I’d forgotten how much fun it was to catch monsters out in the world. Man, 2016 seems like forever ago. That was a rough four years, whew.

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June 17th, 2021 — 9:25pm

I watched “Des” when it aired last summer and loved it. Mom and I watched it today and she loved it too. What a stellar cast!

I got a decent night of sleep last night amd didn’t fade until nearly 3pm! Even took a little walk with Mom this morning before it got blisteringly hot. And I made another batch of my kickass pasta salad this morning too.

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Mom is here!

June 16th, 2021 — 9:20pm

My mom flew up from San Diego to visit us! YAY! First time we’ve seen her since lockdown. Now I can hear my daily Bach concert in person.

Woke up at 5:30am. So tired all day. I’ve got to get my good 10:30pm-7:30am schedule back again. I do not know what is UP with the early waking ever since my trip to Portland. It’s like my schedule got messed up and refuses to reset no matter what I do.

Tonight I will do the thing my therapist suggested, which is so hard to force myself to do even though it definitely helps. Lol. Silly brain.

It’s easy — just writing down all my thoughts/worries/stressors without reading back what I wrote and with no regard for spelling and grammar.

Ok Suzanne I’m gonna do the thing now.

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Mhairi McFarlane

June 15th, 2021 — 6:34pm

I have a feeling I mentioned Mhairi McFarlane here already at some point but I don’t really remember so I’m gonna say it again — she’s a brilliant author! I just finished another of her novels (in audiobook format) — Who’s That Girl — and it was just so darn good. SO GOOD. Marian Keyes is still my favorite author of Contemporary “Women’s” Fiction but Mhairi (pronounced Vah-ree) is definitely a close second. Her books are fun, but not fluffy.

If you like Marian Keyes, Anna Maxted, or Sophie Kinsella, you’ll like Mhairi!

Very tired day. Didn’t do anything but make cauliflower cheese and lie around. And now it’s 6:30pm. At 7pm I can legally call it “almost bedtime” and tuck myself in with some old Survivor and a bedtime snack, my favorite sliced green apple and goat cheese.

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Happy Birthday Em!

June 14th, 2021 — 4:35pm

It’s my niece’s 8th birthday! Happy birthday, wonderful Em. I hope you know that you are awesome, and interesting, and imaginative, and artistic, and creative, and SO KIND, and strong, and brilliantly intelligent, and incredibly beautiful, and a genuinely excellent person. I’m so glad to be in your life. Love forever!

I’m so tired today. Woke up way too early, couldn’t fall back asleep. Took Em out for a birthday ice cream cone and then just lay on the bed with her while she played on her iPad and we watched the antibiotics/antivirals episode of Steven Johnson and David Olusoga’s new series Extra Life (based on Johnson’s book of the same name which I need to request from the library).

Then she drifted away to do other things and I’ve just been resting and amusing myself in one way or another.

As previously mentioned, I keep all my media on an external hard drive, which I have plugged into a Raspberry Pi (wee bare-bones computer) that has media software (Kodi) that talks to my TV. I almost never actually USE the TV unless someone is in my room with me, because I need one pair of glasses to knit/play video games and a different pair to look across the room at the TV, and I prefer to curl up with my laptop anyway. Today it occurred to me that it might be possible to stream from the Kodi software to my phone, for Ultimate Coziness. A tiny bit of googling and I had my answer: tell Kodi to turn on UPnP and install the free VLC app on my iPhone/iPad. Boom. Works like a charm. Couldn’t be easier. Now I can watch my gigantic media library while cozily curled up!

Gonna get myself a cold drink and get back to series three of Taskmaster, streamed right from my hard drive to my phone :D

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Too much sun

June 13th, 2021 — 9:34pm

Washed my hair this morning and went outside to dry it in the sun around 9am. Beautiful morning. Puffy clouds, blue sky, balmy air, no FREEZING GALE blowing in off the bay. And then I had a truly delightful lunch date; we sat outdoors in the shade and talked for hours! Between the morning dose of sunshine and the afternoon of, I guess, absorbing UV light that bounced off the sidewalk, my eyes are burned, my shoulders and upper back and arms are burned. ARGH. Pale freckled reddish-heads have no business living at this latitude. I belong in Canada, where I was able to walk around outdoors in summer without a single burn.

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June 12th, 2021 — 9:38pm

Got up and chatted with Em and helped her make a banner while they all got ready for a day at the beach with her friends, to celebrate her 8th birthday. Man her parents are brave, taking five or six 7yos to the beach! Lol. I was very lucky that Henry never wanted a proper birthday party but was happy just spending time with his best friend for a birthday celebration.

And then I had the house to myself for the rest of the day! Made a big batch of pasta salad, knitted, goofed around on my phone, played Cozy Grove, listened to my mom playing Bach on the piano over FaceTime (she plays for me every afternoon), watched some Crap TV (Survivor) and some Quality TV (Britain’s Most Historic Towns). Very pleasant day.

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June 11th, 2021 — 9:03pm

I started rewatching Taskmaster series 3 yesterday. I suggest you do the same. So freakin funny!

Today was therapy day, YAY! Suzanne is the best, best, best. And I stopped at Trader Joe’s for a few things — green apples and goat cheese for my bedtime snacks, and ingredients to make my famous pasta salad. Gonna make it tomorrow if I wake up with Cooking Energy. (my recipe is here somewhere. Put “pasta salad” into the search field)

Oh and I checked the Safeway near Trader Joe’s for my favorite popsicles (Outshine brand, lemon or lime) and they had them so now I have tangy frozen treats!

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Compression socks

June 10th, 2021 — 7:18pm

My doctor mentioned compression socks at our last (online) appointment, to help with my slight edema, so I don’t need to take even more diuretics (Which are horrible. Don’t get me started). Bought a couple of pairs. Oh man. They are LIFE CHANGING! My feet have hurt for my whole life. Wearing my magical compression socks I can stand in the kitchen and cook a meal without foot pain! I’m not hefty, only 125 lbs, but perhaps the blood has always pooled in my feet? I never noticed swelling until recently. But with my heart problems maybe there were circulation issues as well.

The first pair I bought from have a compression rating of 15-25 mmHg which is not super strong. I liked them so much I bought a second pair from which are slightly stronger at 20-30 mmHg. I can feel that they have a little more squeeze, which feels great, but I’d say they are perhaps a slightly (very slightly) lower quality than the Comrad socks. In any case, I love both pairs and wear them all day. I’m surprised that the man-made fibers don’t bother me or make my feet sweaty, but they’re mostly nylon, not polyester, so maybe that’s more tolerable for me.

I recommend compression socks, even if you don’t have any dreadful health issues!

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June 9th, 2021 — 8:55pm

Feeling better today! And yes, since you ask, it does suck to take two days to recover from a couple of lunch dates. Ah well, that’s just how it is when you have PAH.

This morning I went to Fremont to get an echocardiogram done and stopped for a few things at Trader Joe’s while I was there. When I got home I finished sewing two more tank tops, then played WoW for a couple hours.

I think I forgot to mention that my 4 terabyte USB hard drive full of TV and movies died right after I got home from Henry’s. Could read from it but not write to it. Thank GOODNESS I use a backup service! ( They shipped me a drive with all my files on it, and I copied them over to a new drive. I reformatted the old drive, tested to make sure it worked (though of course it’s not 100% trustworthy), and copied everything over to it, too, so I’d have a local backup next time things go funny. And now I am thanking Past Kara so much for doing that, because when I finally got around to plugging the new drive into my Raspberry Pi (an ultra-mini computer with media-playing software on it that connects the USB hard drive to my TV and lets me watch stuff), I discovered that the Pi wouldn’t see the new drive. Not at all.

Did the Pi die? Plugged in the old drive — all good.

Did the new drive go bad already? Did I goof something up? Did I forget a step somewhere? And then I thought of the file system. I compared the two drives: old readable drive was in MacOS Extended (Journaled). New drive was in whatever my laptop chose to format it with: APFS. Hmmmmm, I thought. Well, there’s a difference.

So I reformatted the new drive to match the old drive. Copied a few files over from Old to New, tested — all good! So, now I wait all night for everything to copy over and then it should all work again.

If I hadn’t thought to make the old drive into a local backup, I would have had to request ANOTHER drive from Backblaze and wait ANOTHER week or more for it to be prepped and shipped. Good call, Past Kara! Oh, and thanks for reading all those audiobooks so Future Kara could listen to them. :D

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Still tired

June 8th, 2021 — 7:27pm

Slept better last night but still tired from my busy weekend. Now that my brain is healed (shocking how long it took), and I’m fully vaccinated againt Covid-19 (the rona, the round boi) I’ve been feeling like I can probably tolerate a little bit of human company. Not a lot — I still prefer to be alone most of the time — but i thought it might be fun to put my online dating profile back up again.

I didn’t really expect that anyone would be interested in a woman with my physical challenges, but my therapist says I’m a catch so i figured what the heck? Turns out I’m very interesting lol. The men are lining up. So yeah I went on two lunch dates over the weekend! And one the previous weekend! How brave am I? Haven’t met The One yet but having fun looking :D

But yeah. Conversation is EXHAUSTING for ultra-introverts. Need to find a man who is happy just to sit next to me and read or watch silly YouTube videos. If no such creature exists, it’s cool. I’m quite content on my own. But if you know one, send him my way :D

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June 7th, 2021 — 10:14pm

Tired day.

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June 6th, 2021 — 9:14pm

I ate so many strawberries today. The Farmers’ Market cherries and apricots were an expensive disappointment but the strawberries made up for it!

Just discovered “In Treatment” on HBO. Why didn’t anyone tell me there was a drama about getting therapy??? It’s sooooo good. The main therapist guy has a funny accent i couldn’t figure it out until I heard some Irish bleeding though — decided he was an Irish actor attempting an American accent and coming up with sort of Spanish/Israeli. Googled, and I nailed it. Lol. It’s not irritating though. Just funny :)

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Farmers’s market

June 5th, 2021 — 9:09pm

I boldly went to the farmers’ market today! Google said they start at 9 so i got there at 8:30 to try to get a good parking spot. Got my spot and noticed they were already open! My spiffy walker made it easy. The compartment holds my oxygen so I don’t need to carry it, and I hung my bags of fruit and veggies from the handles. Got green beans, cherries, strawberries, apricots, cauliflower, bok choi, and Asian eggplants. Sooooo expensive. But fresh and good!

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New oxygen machine!

June 4th, 2021 — 5:44pm

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.

Look at this cute little guy, hanging out under my sewing table, giving me air to breathe!

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.)

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I sewed

June 3rd, 2021 — 9:59pm

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…

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Tired day

June 2nd, 2021 — 8:02pm

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).

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Nice day

June 1st, 2021 — 6:23pm

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.

Package of Outshine fruit popsicles, lemon flavor

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May 31st, 2021 — 10:49pm

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:

And here’s the result:

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So sweet. I might make one for myself :)

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