I took my tachycardia med, I did. I took it. So stop it, I argued half-asleep at myself for hours last night, willing to call 911 if need be but it never quite got to that point, thankfully.

It is fair to say I woke up tired. I called my cardiologist, wanting to know the unknowable: should I come in or could I go about my day as planned? (I.e., would it be okay for me to drive to the airport to meet up with a longtime online friend during her layover? Would I even ever get the chance to again if I didn’t?)

But all I got, after a very long time on hold, was the chance to leave a voice mail message. I was not called back.

Well then. That’s permission, right?

As the morning went on, a pattern familiar to all systemic lupus patients became manifest: feel like h*** when you get up, feel better and better as the day goes on and at the last indulge yourself in half-wondering what all the fuss was even about. Because it feels so good to be able to.

So at quarter to noon I hopped in the car and at long last got to meet ccr in ma, as her online signature has called her for forever.

She texted that she was walking to baggage claim and if I wasn’t feeling up to it that was okay; I texted back that I was sitting at baggage claim, black skirt black vest burgundy (actually more a deep deep rose but who’s quibbling) sweater, knitting.

We bought ourselves lunch without too many people around us and in a mostly pretty quiet spot for an airport–and swapped stories and laughed and laughed like the old friends we both are and are beginning to be all at the same time. We had so much fun. SO much fun.

Have a great time in Hawaii, friend. Wish I were there. Glad I got to go where I did.

(Runs and looks it up.) Camelspin: 328 yards to the 100g.

This has been my carry-around project for awhile. I love the yarn, 70/30 mulberry silk and baby camel, the shimmer, the softness, and it marinated in my stash for a number of years looking for just the right thing till one day in November I grabbed one of the two skeins and thought oh just go.

It’s slippery and a bit of a challenge to hands that have a tendency to drop things.

I cast on more stitches than I should have and silk stretches, so I really had to keep going to have the length/width proportions work out right. I’ll get another four-row repeat out of it and then probably another and I think it’ll be just right.

I really like it. It was worth the wait. And it comes with fond memories of kindness from the folks at Handmaiden: fourteen years ago I showed them a picture of my mother of the groom dress and they surprised me and specially dyed some Camelspin to match for my shawl for the wedding. Wonderful, wonderful people.

So far it’s for me, but we know how that goes. And I do have that shawl already. In Ultraviolet. Which given my lupus’s sun sensitivity is a colorway name that always made me laugh–like it somehow let me get the better of that particular limitation.

Our school district held to the traditional Tuesday-after-Labor-Day opening long after that was no longer fashionable. Years ago we got next-day camping spots at Yosemite, passing school bus after school bus as we drove there–and ran into a family we knew who were doing the same thing: no six month wait, just call and come right in, everybody else’s kids were in class.

The good old days.

Our friends Phyl and Lee throw a ‘last Saturday of summer!’ pool party every year before school starts. We older parents all remarked how odd it felt that that meant today.

Richard and I always arrive late when the sun is low.

I wasn’t about to go swimming with a heart monitor on, but sitting around the pool with old friends at a potluck, that we were definitely into. Made new friends who let me hold their baby.

All of this by way of saying that if you ever make my chocolate hazelnut torte recipe as four dozen mini cupcakes, if you get them in the oven and five minutes later see the bowl still sitting there on the counter waiting to go into the batter that has the half pound of hazelnut puree/cocoa/salt and you exclaim AAAGH! loud enough to be heard across the house and you only got the quarter pound of hazelnuts in that was a different step of the process–no worries. It’s all good. Yes the texture is more crisp cookie on top and a smoother texture than usual below because it’s got all that extra sugar relative to the ingredients that actually went into it, and not a whole lot of Cuisinarted nuts.

The verdict? They were devoured fast and I’m glad I saved a few here for breakfast.

I do have that half pound of waiting hazelnut meal with cocoa in it to play with, though. Whip some egg whites and sugar to meringue them into cookies? That’s my guess so far.

I spent too much time in the sun yesterday dealing with the contractor when he needed my attention, and my lupus let me have it last night. It is summer, UV levels are high, and I’m super reactive to it. I debated going to the ER in the middle of the night and would have but I wasn’t sure enough that I needed to, and eighteen years of having it suggested that my symptoms were all in my head before the right doctor knew right away what I had to this day leaves me needing to be sure I don’t cry wolf in their eyes. There will always be a time when it’s worse. Save it for then.

The only way that way of thinking has served me well is in the doctors who know me knowing I don’t complain. And if I do…

My body kept forgetting to breathe on its own. It could if I made it, it just didn’t want to bother. This is how, twenty years ago, I ended up in a tilt table test in the hospital to stress my autonomic nervous system to see if the lupus was attacking it. 63/21 blood pressure/40 heart when they stopped it (it may have gone lower but that’s the last I remember) and alarms clanging and people running down the hall and bursting into the room (I could still hear, even if I couldn’t respond) said that yes, in fact, it was.

One doctor apologized to me afterward: he had considered ordering that test himself but had swatted away the thought because it was just too rare. Brainstem involvement? He’d only ever even heard of one other case.

I’ve found a number of other patients online–all of us having had doctors who didn’t believe it at first because it just doesn’t happen.

Except it does.

That complication faded out over about a year. It’s been so nice to have it in remission for so long.

I woke up this morning glad to wake up this morning and thinking, You know what? I want a pastry from Dandelion, darn it. I do. Calories be d****ed. But covid is up and exposure is dumb and San Francisco is a bear to drive to and through and it certainly wasn’t going to happen. So I didn’t say a single word to anyone.

Michelle woke up this morning knowing nothing of this little flare of mine with the thought, You know what? We should take Mom to Dandelion Chocolate.

She texted her father with the idea and could we pick her up on the way? They had a dairy-free option now that she really likes so there would be something for everybody.

Did I want to go?

Was this a trick question? They could drop me off right at the door there and, sure!

Turns out the block was closed off to car traffic, but we found a spot close by with a walk in the shade, at least. I had on my sun jacket and wide hat, doing my best not to be stupid that way.

We had such a good time. We splurged. We bought extra for tomorrow’s breakfast to look forward to. We had their hot chocolate. We enjoyed the by-now familiar faces behind the counter.

It was the perfect antidote to that brief siege of feeling sorry for myself.

(Edited to add: Saturday night was so much better. So much!)

It was the last of that jug of milk–it tasted off. I tossed it out, sorry I’d swallowed a swallow and hoping I wouldn’t get sick from it; at least it had been early in that process. I opened a new one.

It was the same.

I wondered if it was the brand/the cow/the feed or what and did those two come from the same place?

Today was the same, only something else tasted not quite how I expected and it hit me with a clue-by-four.

Propafenone HCL side effects, I googled, not sure I wanted to, sure I would find out things I didn’t want to know but I’m one who has to know anyway, so, yeah.

Black box warning? Not my first such. No grapefruit with it? I am definitely not going to cry, although I will miss lime added to things because lime has a lesser amount of the same substance in grapefruit that interacts with various meds. Oh wait that probably means I can’t try my ripening tiny Page tangerines: they’re a quarter grapefruit.

But what I also read is that for people with structural heart damage, the drug is more dangerous, and for people with supraventricular tachycardia, it seems to be definitely less so–and starting it early on in the disease before the muscle weakens is a good thing. (Ya think?) This is all according to Dr. Google, so take it with however much salt you like in your dish.

I had not realized how often how off the beaten track my heart had started to be. The improvement is a welcome relief.

Oh, and, re the knitting: does this kind of sort of look like a spinning dreidel to anyone else?

You need the sheer walls for earthquake safety and the rotted one was replaced. Metal bracing of about 12″ high was put along the bottom edge to keep the water out. Tyvek was put over that to further keep the water out. The bottom of the siding as well as the front-facing part of it were painted to help keep the water out.

Because it turns out that when the previous contractor expanded that tiny bedroom during our remodel and poured concrete for the new patio outside it, he put it flush against the wood so that when it rained the water had nowhere to go. That was our problem. Right there.

Had he pointed out that flaw in the architect’s plans (or was there one? Was it actually supposed to be up against the house?) we would have said well then skip the patio thing, we don’t need it, but he didn’t and here we are.

Chris’s guy knocked on the door: the tape under one of the skylights had come loose and he needed to fix that. (You do not keep leaky ones when you’re about to replace the roof.)

And here I’d been wondering if I needed to bother him with that. Yes please.

He asked me what color skylights I wanted.

Skylights come in colors?

Yes, they can be white to match the foam roof or they can be–here, let me show you, you’ve got brass colored ones. I like those.

Me: I don’t care. Whatever’s cheapest I guess. What matters to me is, I have lupus, and UV light triggers the disease; can it block the UV?

He talked to Chris and that is why we have glass skylights coming. He started to explain to me and I said Oh yes, glass cuts out 96-97% of UV, that’s GREAT! (Suddenly realizing as I type this that I don’t know the color of their frames. I don’t care, but I am curious now.)

The old plastic ones were full of cracks. Glass sounds so much better.

I told him, There’s one other thing… I took him inside the bedroom they’d been working on the other side of, told him to look at the ceiling in the closet and asked him if that was something we needed to worry about.

Hoo boy. He took pictures, texted them to Chris so he’d know, and as I thought okay there goes another five grand he asked me, Is there anything else?

I took him in Sam’s old bedroom. Up there, they did some termite work in the corner but I haven’t seen any damage. But on this side, the neighbor’s tree fell on the house years ago and punctured it. The roofers fixed it but part of it’s behind the floor to ceiling bookcase and I can’t move that to look.

The paint was sheeted away from the wall slightly up there but he pointed out the lack of water damage and how I would know if there had been some; it looked fine. Phew.

I asked him if there was anything else they needed from me today and that Richard was here, so he told me, no problem.

And with that I was off at last to San Mateo to see Mel and his son Corey. Turns out they were set up facing the door right as you walk in so I didn’t risk any other exposure, I just saw them. Kris didn’t make it this trip so I sent her my best and had a great chat with her loved ones.

I’m chuckling that my house photos came through and my pottery ones haven’t yet, but they’re there. Mel and Kris and sons do beautiful work.

And now I need Chris to replace the cheap original contractor’s shelves in my kitchen cabinets so that that weight doesn’t finally, after all these years, get to them.

The eye department couldn’t fit me in all on the same day for all the testing they wanted to do in answer to my query Monday, so after going yesterday I came back today to see just the technician for that last test.

There was the standard question yesterday of, do you have any new allergies.

Dr. S. mentioned by way of reassurance that he’d gotten that same fiery red rash from that brand of heart monitor, but it had faded away after a few days.

We were having a mutually surprised moment: you needed one, too? (How could you be old enough..! Answer: we’re sort of not. But him even less so, and I at least have lupus as an excuse.)

He was fine, he assured me, they were just checking.

He was quite delighted with the homegrown pomegranate. “Look how BIG it is! I love pomegranates!”

Coming through the door on my return home this afternoon, the answering machine was just finishing up.

It was Dr. S.

He had gone over that visual field test’s results. (Immediately, clearly, rather than waiting till the end of the day to get around to the paperwork. He’d wanted me to know right away.) It had taken a little more energy for me to see the flashes on one side, he said, consistent with the optic nerve having been narrowed by what appeared about 25 years ago to be optic neuritis. It had changed since last time, but only a little. From all he could see, there was nothing to worry about–but come right in if anything changes or you have concerns.

And then his voice sounded more emotional than perhaps he’d intended. “I’ll see you in a year. Come back in a year. Thanks.”

A promise that he would be here and that surely I must as well.

I felt that.

I appreciated that, and wished he had held off two more minutes to call so that I could have gotten off the freeway and grabbed that phone in time to say, and you, too. All the best.

To life!

It’s just costochondritis, I told myself. Michelle’s driving to her sister’s in a few hours and I cannot have her wake up in the morning to us being at the hospital over nothing. Inflammation of the lining of the heart sounds terrible but it almost never actually is. All it is is a familiar nuisance.

It’s just a little bit of food poisoning, I thought out loud, wanting to get out of bed and toss that leftover that only I had touched, but I wasn’t going anywhere right then and I knew it.

Awhile later: “Would you google ‘women heart attack symptoms’?”

Turns out I’m not the only one who doesn’t hear well in the dark in the bed at night half asleep, especially when someone’s not talking very loud.

I rolled over on my side and my ribs roared. A silent, Oh, so you *can* do real pain here, not just hints. I rolled back. See? Costochondritis. Had it a million times, you’re just out of practice because it’s been awhile. No real chest pains until you mess with the position of the ribs. Okay, so we can stop worrying about that one.

That sense of–tightness? I think I’d picture it more as my insides being pleated and the stitches pulled tight–I don’t think it had ever been quite like that though. I don’t remember being fitted for a corset. And you don’t get nausea with it–must be the Crohn’s joining in on the autoimmune party. I knew I’d done too much sun time. Right?

Richard asked if he should take me to the hospital and I said I don’t know. Okay, so he did catch on to the gist of it! Just knowing that helped a lot, and very slowly, gradually, a good three hours after it had started during my walking time before it all hit hard at once, it receded enough that I finally fell asleep.

And woke up feeling fine. I threw out that leftover. I forgot about it. Life was normal, just like I wanted it to be. To stay being. Because I said so.

It was 3:30 pm before I finally told myself to stop being stupid and messaged my cardiologist and the response was surprisingly quick and it was obvious and it was quite to the point: “If you have those symptoms again please go to the emergency room.”

The nurse managed not to add, You idiot!

It’s all the costochondritis fake-outs over the last thirty years that are going to trip me up in the end. But, like anticipating earthquakes, the big one is forever not today.

So far so good.

By way of explanation: after having been told from age 13 to age 31 that any of what turned out to be lupus symptoms were, essentially, all in my head, leaving me with a profound sense that I will not be believed by a doctor who doesn’t know me if I complain so I don’t, I now have official permission from one of their own to complain. “Because my cardiologist said so” is what will get me to show up at the ER next time.

I promise to go.

And now excuse me, I’m going to go do my fast-walk thing early so that it hopefully won’t be the middle of the freaking night should anything go wonky.

But maybe not quite as fast. I confess to being slightly spooked.

Hadn’t heard from a friend in awhile so I sent her an email asking how she was doing and how her mom was, her mom being in her 90s.

She didn’t answer the email: instead, she and her husband, dear and longtime friends of ours, showed up on our doorstep to return a purple melamine plate by way of an excuse to catch up in person a bit, late enough in the day that she knew I could visit outside so as not to have to worry about Delta. Masks all around.

The kicker is that I’d never seen that plate in my life and had no idea whose it was–but hey, this was great, I put a few Andy’s peaches on it for them to take home. That worked!

And a great time was had by all.

I know they wanted to test the same test as last time. But my brain isn’t the same as ten years ago. With the 35 lb object that hit the back of my head while cleaning the garage, where the Urgent Care doctor was sure I’d broken my neck and the ER was looking for bone fragments in the brain (nope on both) what it did do was reenact the original damage from my car’s having been sandwiched in ’00. The one where I’d had to learn to use tactile feedback to make up for how the visual and balance centers of the brain had lost each other. Too much visual intensity and my left side would collapse.

I had to go through all that again, only my ability to balance at all didn’t come back as much the second time.

As the treadmill got faster and faster I kept doing okay; I race walk 20 minutes every day anyway, but the machine was increasing the tilt along with the speed and that’s what finally did me in. One more tilt and I exclaimed, I’m going to fall! Because it was all I could do every single second not to. My feet couldn’t tell my brain which direction upright was in and holding onto the machine was not doing it and I was going to rip out all these cardiac leads on the way down if they didn’t stop immediately. Not that I had the breathe to say all that at that speed.

They did.

People usually do 6.5 to 10 minutes, the tech told me approvingly; you did 9.09.

Got the report this afternoon.

Still have the right bundle branch block.

The doctor wrote that “Rapid renormalization of heart rate may reduce diagnostic accuracy.” Sounds like I was too used to walking fast and too healthy to tell.

I’ll take that.

Got the state auto fee bill in June, paid it pronto, but it came with the every-other-year requirement that the car be smog-checked.

It’s a freaking Prius, guys. It’s a ULEV (ultra low emissions vehicle), it’s not… Okay, arguing with them in my head, now c’mon, has that ever worked out yet? Alright then.

It’s also still a pandemic, and I knew my husband couldn’t take the time off work and I knew it meant I would be sitting outside for far longer than I ever, ever do, especially in summertime. I was just mentioning to the cardiologist yesterday about going completely blind on the left for two weeks after five or ten minutes of June sun exposure years ago.

So I put it off till I couldn’t anymore.

At least the place has a–what do you call a drive-through metal pavilion the size of a small school bus? You’d park under it to keep the snow off your car in, say, Wisconsin. You for sure don’t see a whole lot of those around here, but this place had one.

It was up against the building and there were four distanced chairs and a bench set up under it. Three people were already waiting, but my only other option was going to be somewhere with no roof whatsoever. The sign said “Be seated and an attendant will be with you shortly,” so, okay then.

There was only one guy. And he was not coming shortly nor was he attending to anyone.

About 45 minutes later he did finally finish one guy’s car, then two more, and at that point I was next and two more had joined the wait.

At which point I was the only one wearing a mask.

The worker did walk past us a few times because the door to the office was behind us.

He avoided eye contact. He avoided conversation. He was covered in tattoos, all but his face. And to say he was not happy was an understatement–one of those times coming out of that office he looked like someone you’d be afraid would suddenly pull out a gun, he was that angry. At what, I have no idea.

But I do know the two who came after me had struck up a conversation about cars and the one guy was making roll-his-eyes comments about the wait. This was after he’d had some frustration about not being sure if he should comply with the sign, go to the bay and announce his presence, just wait, or what, while the new arrival had assumed he knew when he didn’t either.

I figured, you come to a place that doesn’t do appointments and you take what you get and you plan on that. You read the sign and sit like it says. RTFM, guys. And yes this place used to have a TV blaring in the office for your wait but, covid.

All five of the others looked at my MadTosh knitting (thank you Our Local Yarn Shop in Olympia, WA) during their waits like, oh if only…

My heart went out to the guy trying to take care of everything with no help and people kibitzing as if he couldn’t hear over the traffic. It’s not that they were being terrible or mean, it’s that the previous set had done a bit of that too and it can’t be fun to have to listen to that all. day. long. while you’re working hard, alone. It didn’t help that his dog was there with him (it was apparently in the room behind the office) and the dog was barking almost nonstop while he periodically tried to quiet it while the machinery did its thing. Sometimes he even succeeded.

The grandmother in me totally kicked in. I wanted to give the poor guy a break, so I made a point of looking up and noticing him with my eyes, smiling a bit when it felt right, simply acknowledging his humanity every time he went past (which was only a few times.) I had no idea if he even saw that.

When it was my car’s turn about 80 minutes in, I apologized about the deafness and he had no idea about facing the person so they can lipread (no, no mask) and he didn’t but we muddled on through.

But here’s the thing: when he handed me my paperwork and car key a half hour later there was this moment of

I’ve been sitting here staring at the monitor

I don’t know how to describe it

like he was acknowledging my humanity back and trying to figure out how to say thank you but there were no words so he was just silently glad for having been offered a bit of an emotional break in his day. Something had eased.

And I have no doubt he did better at dealing with his other customers after that because he’d felt that and felt seen in that moment.

To my surprise, so did I.

Last night changing out of my long sleeves into my pj’s I noticed the veins in my hands and arms were very swollen, deep blue, and you could see them going from my hands wrapping around my arms on up to near the elbows. Puffy. I checked around. It seemed to be mostly there.

“That’s inflamed,” said Richard, with both of us aware that my lupus did this all over early on in the disease and the doctor guessed afterwards that I’d had cerebral vasculitis. That’s where my face blindness and short term memory damage originated from. I was 31.

Urgent Care was closed by then and he asked whether we should go to the ER. Insurance punishes you heavily if you go straight there ($13k bill last time), even when the doctor tells you to. We knew we would spend a very long night awake and go home near dawn beyond exhausted, which would greatly exacerbate the whole autoimmune flare thing, and chances are they would probably just dismiss it anyway; at an hour when all we wanted to do was fall into bed it seemed like the best way to treat it was to get a decent night’s sleep.

I was antsy and didn’t sleep well at all. But it was gone in the morning. Breathe.

My GI doctor said I could see her next Monday or come in and see someone else if I needed to on those Crohn’s symptoms; again, my call.

Today was not perfect but it was improved on that one, too, and I was able to eat normal meals, so for the moment Monday it is. But I will change that in a heartbeat if I need to.

So today there were more birds in the yard than I’ve seen in awhile. House finches in breeding season: you never saw such a brilliant red. A western tanager flew up close to  the house, the jasmine’s white buds promise their exquisite scent on the way, the pomegranate sent out more bright red buds, and we shared a few blueberries straight off the bush after dinner. The newest apricot seedling began a new set of leaves and after its faltering start seems to really be taking off.

It felt a good day to drink every bit of that in.

I’m going to go top the day off with a few rows of a bright blue soft wool hat and then call it a night.

I’m trying out that lobster shell compost. It was black and velvety rich and finely crumbly in the hands and you could just hear the plants swooning. I mixed it in to about 60% organic bedding soil and pretended I knew what I was doing. (I only buy organic after getting soil from Costco a few years ago that was full of little green plastic beads.)

The youngest Anya seedling is the guinea pig. It’s pretty dwarfed in that 15 gallon fabric pot but given the vigor of its roots I didn’t want it to grow through my 5 gallon in a month, seeing as how it is, in fact, a tree.

On the other hand, it’s too heavy now to move it much. So it’s in a good spot because it had to be.

The fabric pots dry out fast, but the other apricot that’s in one is looking really healthy and happy. They do not like soggy roots so those are a good counterbalance to my tendency to overwater based on the fear that I can’t go out in the bright summer sun to rescue them before evening’s safer UV levels.

The bigger thing is: I finally went to the new audiologist today. It felt so strange to just go do a normal errand out in the wild like that.

She was a peach. And she was thorough. I’ve been dealing with hearing aids since I was 27 and never before has someone tested to see how well I lipread.

There was the standard man’s voice speaking words into one ear, then the other, where you try to repeat each word back. She chuckled at one guess: “Well, that’s creative.”

But then, taking her mask off from the other side of the thick glass, with the lighting not super good for it from my view, she went through what was clearly the same list of words as I sat in the anechoic chamber–and I zipped right through those with confidence. Only had two I didn’t quite get. It was absolutely revelatory to me. I had NO idea I was that good at it. I knew how much I need to see people’s faces, but…!

She examined my hearing aids and said they were eight iterations ago, and now they can do all these other things.

Cool. That’s what I was there for. My old ones sometimes turn themselves off randomly and are clearly at the end of their lifespans.

When she said Oticon would take two weeks at their end, I asked if I could pay for overnight shipping? I want to be able to hear grandkids sooner rather than later. She checked into that and, yes, they could do a rush job on the whole thing, sure.

A week from Monday my cracked ear mold will be history, I will have much better background noise cancellation, and we’ll see how it goes.

And even with that rush she charged me about $1500 less than the last time/last guy. Nice.

As she was writing things up, there was a computer screen next to me with two audiogram charts (no name visible) with five slightly wobbly lines that curved up a bit and then down again with Xs and Os marked along the way for right vs left ear, but these other lines too were marked for–tympannometry? I don’t know, and five seems odd when you’re talking ears but that’s what was there.

When she got done, I motioned towards the screen and said, “It looks like middle school band members trying to read the music.”

She glanced at it and guffawed. “You ARE creative!”

Constance’s work brought her back in town. Twice in two months after not seeing each other for probably ten years!

The plan was to sit in the shed again, but walking a few steps from the front entryway out of the air conditioning and into the blast of heat, we turned around in unison, going, just, no. She was fully vaccinated; I will be Thursday. Less risk to it overall if we go inside than of me being out even in filtered sunlight, right?

We sat in the living room distanced with me masked and her not so I could hear and spent a couple of hours swapping stories and catching up.

Man did it feel good.

She worried just a little about her Anya apricot seedling being babytreesat by her house sitter for a few days.

I figured if anything happens to it then I’ll know where the next one of mine should go.

That shot woke up everything autoimmune and it was a bear, to the point that I nearly asked to be taken to Urgent Care. But then I’d have to sit up in the car, and once I managed to keep some fluids down I knew it would be okay. I spent the day asleep till after 7 pm.

The worst is over–and yes absolutely I’d do it again in a heartbeat.