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!)