When Sunday night starts with a nosebleed — extended, though light — you know it’s going to be a fun week.

I still don’t know why they happen. It seems to follow a low hemoglobin, but not reliably. Not every time it’s low. Just often enough to be a warning shot without ever being a rule.

So: not so much a week of problems, as a hefty week of appointments and appointment-adjacent medical engagement. Sitting here Sunday night, I’ve already got the list running — I need to reschedule a cardiac appointment, I need to finally get the oxygen tank exchange sorted. Last week started exactly as expected, and then we were out of the gate at Emory-Winship into a late evening, a tour, and an appetizer of the ICC. So what treasures await this week?

Leave room for cream.

Here’s what chronic illness teaches you, over and over: expect the unexpected. No matter how tidy your calendar is, leave room for cream. You’re going to need it.

Maybe she’s too tired to do anything, so I do more. Maybe a doctor calls to move an appointment. Maybe, maybe, maybe — you never know what’s coming, even under the best conditions.

My day starts when my brain wakes up — no alarm, even when I’m exhausted. I start surfacing around three, and from there it’s a game: how many more scraps of nap can I steal before the brain is running at full speed and there’s no point pretending otherwise. Then the mushroom coffee, or a ginger-lemon if that’s the morning, and off to the races.

A normal morning: check email — these days braced for bad news, or the confirmation that a client approved the work and released payment. Then the audio transcription. Measure the social brands. Sweep, mop. Walk the property, and lately move logs. Check the bees. Let the dogs out, feed and uncover the birds, answer five creatures and their five different needs. And somewhere in all of that — earn.

Because here’s the thing I want to be clear about. I’m not unemployed. I’m also not financially secure — and that’s a result of the job, not the absence of one. The caretaking is the work that keeps me from the work, so I stack income wherever it fits in the cracks. One minute I’m getting a bone marrow biopsy for a clinical trial; the next I’m recording silly phrases for some new Siri; the next I’m auditioning for a film, or narrating an audiobook. Whatever earns, whenever the window opens, around her needs.

I say that not for pity. I say it because it’s the truth almost nobody tells: this is earned, not waited-for. I’m not caring for my wife and passing the hat. I’m working — hard, and constantly — and still there’s everything else undone.

And then there’s the line everyone says: “let me know if you ever need anything.” Most of the time, that’s where it ends. But not always — and this is the part I won’t skip. My neighbor. Her mom and my dad. A handful of others, maybe six in all, who show up in ways big and small. For us, every one of them is big. I see you. I’m grateful for you. You are the difference between hard and impossible.

Here’s the part that’s harder to admit. My own things don’t get done. Laundry waits until I’m nearly out of anything to wear. My back is getting worse. So is my vision. And I can’t stop to deal with either — because I’m busy, with all of it, and all of it ultimately comes back to Melody.

Let me be clear, because I know how this can read: that’s not a complaint. It isn’t woe-is-me, and it certainly isn’t resentment. It IS the job. It’s the job of anyone who married and actually meant the vows — not just got caught up in the moment and skimmed them, the way a lot of us Christians “study” our Bibles. It’s just context.

The bees, and the trees.

Here’s the one that actually stings.

I keep bees. It’s weather-dependent and time-dependent, like everything. And I’ve missed the honey harvest two seasons running. Not because of the challenges. Not the vandals. Not any of the dramatic stuff that would at least make a good story. I missed it because the window came — that narrow stretch when you can harvest — and something happened. Melody, an appointment, a problem, time. And by the time I got to it, the bees had eaten it all.

I didn’t lose the honey to catastrophe. I lost it to not having the fifteen minutes when the fifteen minutes mattered.

Same story with the wood. A recent storm dropped another tree — the sixth in about a year. I haven’t cut it up, let alone split it. And that’s on top of a pile already cut and waiting to split, and a few older ones still down to be cut. I’ve even got my neighbor’s splitter sitting right here, and I haven’t split a single log. Winter is coming, and a homesteader is always living in the next season — so I’m in a quiet, full-blown panic, while the schedule fills up with, no, not FIFA watch parties or paddling the river, but fixing this and handling that. The list never empties. Time doesn’t clear the pile; it just adds to it.

And the gigs? The pay is rarely proportional to the skill or the effort — but I’m thankful for any revenue at all. Of course, even collecting it is work now: all the new-fangled currencies and payment apps and fees mean more steps just to move the money I already earned toward the bills already due.

The old couples at the clinic.

I’ve noticed something over the years. Taking my parents to the Emory clinic. Melody, more recently, to all the various providers. And I had opinions about those old couples.

You know the scene. The husband in the chair, the wife pushing him along — a little curt with reception. Don’t dare make eye contact. Sometimes the roles are flipped. And I remember thinking: my God, I don’t want to be that bitter when I get old. I don’t want to be a mean old man.

I see that scene completely differently now.

They weren’t bitter. They weren’t grumpy or heartless. The word is apathetic — and not toward people, toward nonsense. Time is short. Nonsense has an even shorter budget. There is always more to do, and most of it isn’t comfort or care — it’s the administrative toll, the endless coordination. And for those of us who are autistic, coordination means stimulation. It costs.

They weren’t mean old people. They were focused — on priorities as vast as their patience was thin. And I’d bet most of them played the same games we do — turned the chair ride into an adventure, found the joke. God bless every caregiver.

What this is actually about.

Which brings me to something I want to say plainly. Wife Wednesday isn’t about what went wrong at Piedmont. It isn’t about the fight for change. It isn’t the Melody Show.

It is all of those things. But what it’s really about is awareness. Life with CKD, and now MDS. And life as a caretaker.

Ask my pastoral mentor. This isn’t a new conviction for me. It’s the reason for this series, and the reason I keep writing it down.

What the week actually held.

So here’s how it looked. Emory on Monday. An Emory study on Tuesday. NxStage — the dialysis supplies — on Wednesday. And then Friday did double duty.

First, cardiology — and it started with a rescheduling headache that broke entirely our way. The appointment landed sooner than the original, and moved to Emory Decatur: much closer, a far easier ride for Melody. Sooner and closer. I’ll take it.

We brought up the elevated blood pressure. His read: everyone’s pressure rises during a transfusion — that part isn’t the concern. The concern is the size of hers. A normal rise is ten, maybe twenty points. Hers climbs forty to sixty. That’s the outlier — and he agreed it is one. So the plan is to start her from a lower baseline: an experiment with an anti-anxiety medication before the transfusion.

And the transfusion center itself? Bigger. More staff, so it’s unlikely we’ll see the same nurses. But so far, they simply follow protocol — and they don’t make it weird. They understood pretty quickly that she’s an outlier, and got on with it. That’s the whole difference. Not heroics. Just competence, without the drama.

The second Friday appointment was mine — one of those trials I mentioned. I was evaluated for, and accepted into, a clinical study. (More on that another time.) And the O2 tank exchange? After I missed the holiday cutoff, it finally got scheduled — a real pickup, on a calendar, for the first time in the entire time Melody’s been on oxygen. That sounds like nothing. It is not nothing.

The part I’m still chewing on.

Here’s where I’m not fully satisfied — and I’ll say it carefully, because he may well be right, and we’re going to test it properly.

His read on the size of the spike is anxiety. Hence the pre-medication. It’s a clean experiment: calm the anxiety, and if the forty-to-sixty-point jump goes away, he’s right.

But I keep coming back to something else. Every doctor I’ve raised this with reaches for the same frame: blood is fluid, treat the right heart, remove the fluid. Volume. I don’t think it’s volume. I think it’s viscosity — how the transfused blood mixes with hers, and how her body absorbs it. Flow rate is the one thing I can control, so it’s the dial I watch: run it faster, the pressure climbs faster; slow it to a “chill chill” trickle, and the spike is gentler. That’s not an anxiety curve. That’s a dose-response curve.

I’m not a cardiologist. I might be wrong. But the beauty of his experiment is that it settles it either way — if she still jumps forty to sixty with the anxiety handled, then it was never anxiety. I suspect this ends with a few very smart people finally sitting in the same room to talk about it. That’s going to be great.

Because you never do know. But you keep a little space open, and you keep going — and every so often, the tanks get scheduled, the appointment lands closer and sooner, a neighbor shows up, and it turns out the week held a few treasures after all.

(Oh — and on Monday I recorded a voiceover in the wrong format. Then later the same day, a second project came back needing a re-record. Because of course it did.)