A discussion in Sunday School and a question was asked: have you ever done something with the best of intentions that turned out badly?

One young woman raised her hand and came close to tears as she described how, while living overseas, she had encouraged a friend to come to church that week. The friend was a Mormon, her husband was not, though he came with her when she did come. But she had a serious chronic illness that made it difficult and she hadn’t in some time. She missed everybody and she was missed.

H. talked her into it. She was so looking forward to it that she made herself do it and she did, where she was surrounded by exclamations of joy at the sight of her.

But. The woman’s husband took H. aside and reamed her, telling her, You don’t understand: it took all of my wife’s energy for this whole day and probably this whole week to make it here. You don’t get it! You don’t get what it does to her physically!

H. had regretted the whole thing intensely ever since. How had she not seen. How could she have done that to her friend. And her husband, too, for that matter, poor guy.

I immediately raised my hand. I have been that very ill person with chronic disease, I told her. I know how face time with friends your illness has deprived you of, when you get to finally have it, can power you through for a long long time afterwards and you never forget how much it meant to get to see them. You did the right thing.

She looked across the room at me with what I can only describe as a sudden fierce disbelieving hope, wanting that to be true.

I said it again. You did the right thing.

As I thought of the time in ’03 when my doctor showed up to my hospital room every morning and every evening on his own time to be present with me while I was going through this and I could not let him blame himself when it wasn’t in any way his fault. I couldn’t let him down. I couldn’t do that to him, I had to live.

Yes we tried an experimental med and yes it saved my life–but that came after he already had by who he was.

And there was the friend and her daughters who came over to wash my hair over the kitchen sink when my PCC line for IV feeding still being in meant that if any water got into that incision it would channel an infection straight to my heart.

Yes finally finally finally having clean hair again after two weeks was wonderful, but their being present was everything.

Days after I got out of the hospital, so weak that I knew in my bones that if I caught a cold it would kill me and well before masks were a findable thing in the wild, one of my sons was giving a talk in church and the other was playing the organ and I was not going to miss that. I am their mom. I cheer on my kids. I insisted on being wheeled into church.

I managed to sit upright through the opening prayer and I think song but that and the shower beforehand to get ready and I simply laid down on the pew and snoozed through the rest of the whole thing whether I wanted to or not.

But I was there. To the very best of my ability, I got to be there for my kids and I got some in person time with dear friends.

And every one of those moments with other people, when there was nothing left but who we are and how we feel, helped get me through that long recovery process.

First H. went to her friend’s house to be with her.

Then she gave her the courage to try and to find in herself the willingness to take that risk of exhaustion for the love it would bring into the light.

Yes H. did the right thing, so much yes.

And had it proved the wrong time that week then her friend would have had a goal to focus on for her future, knowing that she mattered to her friends.

I’ve been fine/no big deal/not worried/it’ll all be fine/I’m sure it’ll be negative/ about the whole biopsy thing. But today I was  remembering the GI doctor who diagnosed Crohn’s: she suddenly realized she was talking about it without taking my measure on the news she’d just thrown into my life and abruptly asked, Wait–are you okay with this?!

What–that I have a life-threatening disease? I laughed ruefully. So what’s new?

Today I found out my cousin went to the ER in pain and found herself with a stage 4 aggressive ovarian cancer diagnosis. If I’m in shock, and I am, I can only imagine how she and her kids feel.

Somehow that broke through whatever facade I had with myself and now I am just really really really wanting to have my news given to me and over with, whatever it’s going to be.

So I threw myself into hanking and scouring coned yarn and deciding that yes, that blue really isn’t the right blue and yes, I’m really going to go order more and have to wait again for it to come–and then I did–because I can control what I put into my little sister’s project and by golly I am going to do it right.

During that thumb-twiddle wait I wonder if any of my wool, any wool, would be soft enough for my cousin’s head while going through chemo. If you have any experience on that, (I mean, I’ve certainly made them, I’ve just never gotten any feedback on them) I need all the guidance I can get.

Someone was at church today whom I saw at the play last night but did not recognize.

I had no idea she was the granddaughter of one of the members whom we had all been asked to pray for a few years ago: she had been pregnant, then the pandemic began, then she found out she had stomach cancer.

It had not looked good.

Today is the first Sunday of the month, when in the Mormon Church people take turns coming up and addressing the congregation as the Spirit so moves them.

She stood.

She was so grateful for all those prayers, and for the ones she knew were to come because there had recently been some bad news again… And that was all she said about that.

The important part, she wanted us to know, is that our good works matter. Our love matters. It matters. Always. Never hesitate.

Later, during a Sunday School discussion, wanting her to know she was not alone on the human front as well as the heavenly, I described being in a hospital bed fifteen years ago too ill to do anything for myself much less anybody else and very very close to death.

Except: I was still me. If I had to go through this (and obviously I had no choice in the matter), then the one thing I could still do was I could pray for every single person who came into my hospital room.

And you can’t pray for someone, and mean it, without loving them.

One doctor confessed later that he’d written on my chart, Patient looks deceptively well. Do not be deceived. Because I was too cheerful.

I said, I knew that the doctors and staff in the hospital see people in their worst moments. If I could love every one of them, that could reverberate forward through all the years they serve there. It could help them to see the best in other patients in whatever circumstances the way I was doing with them, it could potentially ease the burdens on thousands and thousands of people.

The young mom was going, emphatically, YES! YES! You could see the relief in her face that someone got it, how she’d felt and dealt with her own experience a few years ago and that was rapidly coming at her again, someone knew, that what it had been like for her had been like that for me, too. And the result had been blessings. So many blessings. Oh the stories we both could have told each other.

I so loved her for her loving–everybody.

And renewed my prayers for Jordan. And her family, and her medical team. That much, I can do.

And it is no small thing.

The Faustman Lab affiliated with Harvard has a paper out (I’ve seen reference to a 2023 update) on why the vaccine for tuberculosis is proving to be valuable for reversing type 1 diabetes–the type that is autoimmune-based, which is why they’re now expanding their work to other autoimmune diseases.

The then-experimental drug that saved my life twenty years ago dramatically enough that one medical resident changed his specialty so he could be part of that again (Hi Dr. Shih!) was a TNF-type drug. This is far better than my old mouse-celled one that they had to stop after it caused (thankfully temporary) congestive heart failure.

Quote: “Induction of TNF through BCG vaccination or through selective agonism of TNF receptor 2 (TNFR2) has 2 desired cellular immune effects: (1) selective death of autoreactive T cells and (2) expansion of beneficial regulatory T cells”

It sounds like it’s inducing the body to produce its own TNF in a way that does the most good, avoids the damage mine caused, and is certainly well tolerated.

The thought suddenly hits: what if I could travel and play normal tourist and go out in the sun and just do, y’know, normal people type things in the daytime again? Rather than risk setting off multiple organ inflammation via the UV exposure starting the moment I step outside?

That vaccine is out there right now.

It could actually happen in my lifetime and certainly my kids’.

For sanity’s sake these past thirty years I’ve avoided spending time or thought on the what-ifs, but I gotta admit I’m sneaking some peeks their way right now.

Oh, and, meantime, the daughter of our elderly neighbor is in town, we had a good chat, and I mentioned the outdoor light that seems brighter than the LED streetlight and turns our bedroom into daytime all night long; could she maybe change that lightbulb?

She was both horrified and gratified that that was something she could so easily do that could do so much good. She’s on it.

I know there will certainly be days to come when I will wish that my bad day was the kind of a bad day like this one was.

That said.

We were about to leave for church when, walking down the hall, I caught a glimpse of shiny–wait, what? Turned and looked and it was sunshine from the skylight bouncing off the water on the floor. Water?!

The toilet was Niagara-ing impressively.

I waded in and turned the water off to it, we put a whole lot of towels on it and down the hallway, threw a bunch in the washing machine, managed not to soak our Sunday best in the process, washed our hands and headed out.

Or were going to–but someone had parked across our driveway, you know, one of those I’m just running over there for a few minutes things, and he was soon out of the way–after sitting in his truck and being on his phone awhile first.

Got to church, sat down–and the woman behind me started coughing. A lot. Right into the back of my neck. She was not wearing a mask but I had just stocked my purse with a bag of new ones so no problem, and offered her one to match mine.

This is someone I’ve known for 36 years and I did not expect the reaction: she stood up in the middle of the meeting livid, stared me down angrily, and walked out.

I was like, what just happened here?!

I’d had no idea she was a MAGA. I was trying to help her out (and everybody around her) with what she’d clearly forgotten rather than embarrassing her by moving away from her myself, which would only help myself.

I apologized to her husband after the meeting for upsetting her.

We got home from church, started in on the towel laundering, and the dryer was only halfway working. It would do it, but it took two and three rounds through and in fact the last load of towels is still running at 8:00 pm as I type even though I did what I could to make sure the vent was clear. (Ed. to add, third round didn’t do it. I gave up and hung them to dry the rest of the way.)

The grandkids FaceTimed and that helped save the day.

But I knew I had to say something to that woman or this would come between us forever and life’s way too short for that.

I apologized in an email. I had given offense and I’d had no intention, but I had and I was sorry.

(Type, edit, pray for her, edit, go away for a few minutes to look at it with fresh eyes, repeat, pray so I’d say it right. Edit some more.)

But it felt important to keep at least some medical context so I said, my autoimmunity has been mildly flaring and it took me straight back to 14 years ago when I’d been starting to flare and someone had sat down behind me in church with “just a cold” that turned out to be bronchitis. My lupus and Crohn’s went nuts and I lost my colon and six months later after I still didn’t stop bleeding they did major surgery again.

I touched briefly on the lung damage and cardiac inflammation. I just can’t do germs with a system that thinks I am one. And so I watch my exposure carefully, I said. I just wanted to explain–but I gave offense and in no way meant to and I apologize.

Prayed again and sent it off.

Sometimes you just have to tell someone how it is. Especially when you don’t want to be a was.

And to establish boundaries.

She so admired the dandelion gerdan I was wearing that day.

I went back to one of my artist friends in Ukraine and explained that I wanted one of her designs for a dear friend: and so it was custom made and sent on its way, taking a little less than the usual time to get here.

Marnie stopped by today and I told her I was hedging my bets–and since I’d been able to have a choice, she should, too.

What I didn’t know was that she’d come out of retirement to teach refugees at the community college to help them get certification in what they were already trained in in their former countries: there’s an intense program that puts great demand on both teachers and students and both have to be completely committed to it–but their graduation rate is 100% so far.

Some of her students are Ukrainian refugees. She was wearing a shirt one of them had designed with a sunflower on it–she’d bought six.

We are distant cousins, can you tell?

She knew they would instantly know what her gerdan was and the enormity of the support it would convey.

I’d had no idea. None. All I’d known was that it felt imperative to gift specifically Marnie with a beaded necklace from Ukraine.

She exclaimed over the tininess of the beads and the size of needle that would require and how, on both of them, the artists had had the skill to make the thing lie perfectly flat. She was familiar with beading looms and the work involved.

I reminded her of the day twenty years ago when I’d been released from the hospital with a PICC (pronounced pick) line still in, a direct path for the next IV from the outside threading through to just above my heart: just in case I ended up back in the hospital. After going through weeks of being unable to digest food and very nearly dying, if they had to do intravenous feeding again they didn’t want to have to do that surgical procedure twice. You can’t put that stuff in a regular IV.

I had been warned I was absolutely not to get it wet at risk of transmitting infection to where you’d least want to.

And I desperately wanted clean hair again.

Marnie and her daughters had not only come by but had brought a swivel chair with them to make sure I’d be comfortable, got me leaned back over the kitchen sink and washed my hair for me.

Yeah, she said today, but that was a long time ago and it really wasn’t… I mean…

I told her that when I ended up back in the hospital with the next flare six years later, they told me, Oh, we don’t do that anymore. Too many complications. Too many people ended up with infections.

Because, (as I looked her in the eye), they washed their own hair. I have been so intensely grateful all these years.

She had earned so much more than jewelry. And it is: it was hours put in for her sake by someone who doesn’t even know her but wanted to do that for her, just to claim a corner of love in the world while surrounded by war, the gift of knowing that she was making someone happy out there by what she could offer of her skills.

After Marnie left I sat down and wrote a note to Oleksandra, saying, And my friend teaches Ukrainian refugees. They will see it and they will know they are in a place that is safe.

I pray Ukraine will soon be so as well.

Thank you thank you thank you.

If I’ve sounded at all antsy of late…

I’ve gone several years at a time without it happening, and when it did it was always at night, almost always after I’d eaten not only a late dinner but one that I knew was a risk. You’re at a restaurant celebrating a friend’s dinner? Just enjoy the friends and food and if you have to deal with it later you deal with it later.

Middle of the afternoon. Never like that before. And again. And again. And again. And again. Simply ripping open after coming unglued from the top at random. Eight times in, what, 18 days now?

Monday I sat down after the latest and wrote a letter to the manufacturer saying whatever is going on with your product is not acceptable. Fix. It. It is making it impossible for me to so much as leave my house. Insurance only pays for one bag per day and did they have any idea what patients are charged out of pocket for this stuff?

The answer to that being nearly $400 a month for the most humble of bodily functions that the surgeon’s knife took away.

They verified who my supplier is–whether to work through them or to trace a possible source of the problem, I don’t know.

They (which, I’m not sure) have now FedExed me replacements.

One bite, two at most, one swallow of fluid. Every snack, every meal. Digestion by water erosion. No high fiber. I haven’t had a cob of corn in 14 years. No spicy foods that deteriorate the seal.

And then today it happened again anyway.

Maybe I should write the FDA, too.

Given that it hasn’t happened since the year I had my colorectomy surgeries, ie twelve years of carefully doing this ten-minute procedure right after one long slog of misery teaching me why I’d better, I thought I would write it here (sorry) so that I can find it to reference the date later.

I ended up at the dermatologist’s as an emergency appointment.

She looked up what the other dermatologist in ’09 had prescribed for such an infection under the dressing, just to be sure, because there are so many ways it could go wrong. At first she started to say apply it three times a day, till I laughed, and then, yeah, because you seriously shred the skin if you take that thing off before it’s ready to, no matter what. It is designed to stay on. As one would hope.

Every third day, I told her. That’s when I can get to it. Except that the infection itself is messing with that part of the adhesive, so, yeah. The partial antidote to that is the 4″ Eakins the Stanford nurses gave me, but you cannot just walk into a drugstore and pick up a box. I ordered, as someone with a permanent prescription for all such, but it’s a holiday and it’ll be Monday if I’m really really lucky. Could be–who knows.

We worked out a compromise. And then we laughed ruefully together at the randomness of it all: heart, eyes, skin, that should be enough for awhile, don’t you think?

She’d almost given me an oral antibiotic and said it might yet need one. If I start running a fever over the weekend she wants me in to Urgent Care for that and to for sure call her Monday and tell her how I’m doing.

I promised I would.

Tomorrow is the start of Mel and Kris‘s last Harvest Festival show ever. Mel’s past 70 and Oregon is a long hard drive with so much physical work at either end. After thirty years of friendship and pottery, I want so badly to see them. No stupid stoma tricks getting in my way. Okay? Is it a deal?

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.

The problem with chronic diseases (yeah, just try to scare me, after 31 years I’m onto them) is their ability to randomly yank one’s attention when you don’t have time for that nonsense.

As if we ever do.

I tried to figure out what I might have eaten that neither of them had. Hmm. Nope.

The day after my second shot I had a flareup of lupus and Crohn’s symptoms both but didn’t tell my doctors because what could they do, tamp down my immune system? After demanding it get to work?

It gradually tapered down and was almost gone, so today was a surprise (did I do that yard work too early, did I get a UV dose?), but at least breathing doesn’t hurt. And that is huge.

Today’s Crohnsishness is a lot better now than it was this morning; I got some good food down and am hoping it was just a passing bug.

Meantime, the San Francisco peregrines, other than the female who hatched four days late, have flapped their wings at the edge of 33 stories up but so far have quickly turned around to be facing home sweet home in case doing so carries them off anywhere. Here, about seven minutes in.

The one with all the white fluff still at the beginning of that video is Echo, the female who hatched four days after her siblings. She’s behind, but she’s catching up. Even jumped up there once and got her first view of the whole wide world laid out all the way down to where the winds can’t carry a tune.

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.

Today’s new vocabulary word: episcleritis.

Yesterday morning I thought I’d scratched my eyeball somehow in the night as I repeatedly put eyedrops in and kept trying to find where that exceptionally long sharp eyelash could be. Maybe I’d scratched the cornea again. All day long I could not make it better but I hoped a good night’s sleep would.

Eye pain kicked me out of bed early today.

My exam was my husband taking pictures and my doctor asking me over the phone if it hurts when I touch my eyeball?

I looked at the handset funny a moment. “I dunno, I don’t usually go around touching my eyeball.”

She laughed, I closed my eye and gently tried it and went oooh yes definitely.

Any discharge?

No.

She saw one of the pictures.

Yup, pretty clearly episcleritis. Start the drops and if it doesn’t get better get right back to me.

Who knew, having had lupus diagnosed half my life ago, that there could be a new complication I’d never heard of?

When I told her NSAIDs make me deaf, she considered a moment, decided some tiny amount could get in the bloodstream, and prescribed steroid drops instead.

Which flashed me back to the staggering 200 mg/day dose via IV twelve years ago that took 25% of the bone mass in my hips (I was in a study at UCSF at the time) but did absolutely nothing to fight back my soaring autoimmunity–and my GI doctor later telling me, But: just because steroids don’t work in one part of the body doesn’t mean they won’t later work in a different part for completely different reasons.

I bet Dr. R doesn’t remember telling me that but I do and it was something I was going to need to hear and today was the day. I had to try.

Forty-five minutes after that first single drop I said to Richard, It was *painful* before. Now it’s, eh. Irritated, but, eh.

Four hours later my eye told me my dose was wearing off. And then it again thanked me for that drop, even if it took me five tries that time to land one in. I am not yet good at this.

I hope there are enough doses in that little bottle for all the times I’ll miss but I’m really grateful to have it. And that it works! Yay modern medicine!

At 9:55 this morning there was one customer being helped and three clerks, the easiest December post office run ever. I told Anne her apricots were on their way and she told me those are the best she’s ever had, she can’t wait. She made my day.

That was just the start.

This afternoon I got a text from a friend: he’d heard Richard was sick; how was he doing?

Definitely getting better, thanks.

Next thing you know there was a second text saying he’d dropped off a little something for us.

I opened the door. He was already gone–which makes sense, because, exposure. There was a bag with eggs, veggies, grits, butter, juice, milk, just because he could. Wow! I was gobsmacked, and so was Richard.

His stomach’s still a bit tender, eggs are easy on it, we were running low, and now we aren’t.

A little history: years ago I got sent to Urgent Care with what was clearly the start of a Crohn’s flare. It’s not like I didn’t know what that was at that point.

To my great surprise the doctor who saw me was dismissive of anything I had to say about that; all he wanted to know was, had I eaten raspberries.

A day or two ago…

He insisted I had salmonella poisoning from Mexican raspberries (who says they weren’t US grown? There was no recall nor mention in the press in either case) and he sent me home without doing anything about the Crohn’s, which is indeed what it was. My GI doctor rolled his eyes with a bit of suppressed indignation at that when I ended up in his office, which made me want to say oh thank you thank you.

So. I found myself thinking, well, you know, though. My husband does not have Crohn’s and he did eat a lot of raspberries when I didn’t.

We had more of them. I wasn’t taking any chances–I baked them into a clafoutis, with some blueberries to get it up to four cups of fruit. Cook’em. They’re probably innocent but this way I wouldn’t have to worry about it.

The recipe calls for whole milk. I substituted the last of some cream 50/50 with the 1% that’s always around and was surprised at how much of a difference it made–it definitely improved it over my usual low-fat ones.

And it’s a good way to get fruit and protein down a whiny stomach.

Thanks to our friend, if Richard wants more, and he’s quite fond of it, I have whole milk in my fridge now and I can make it come out that way again tomorrow.

Clafoutis recipe: butter a 9″ deep-dish pan, not smaller, whip three eggs a goodly while, add 1/2 c sugar, beat, then 1 c whole milk, still beating, a small pinch salt, 1 tsp vanilla, a tbl melted butter, still beating, and then at the last beat in 1/2 c flour. Pour it in the pan quickly, put the fruit on top, bake about 40 minutes, 45-50 in my ceramic pan or till a knife in the center comes out clean. (Ed. to add: oven at 350.)

And then try to wait till it cools, but I won’t blame you if you don’t.

It printed out to six pages? Well that was way too long anyway.

I tossed my notes halfway through and riffed on what the high school senior had said before me in her talk about hope. I looked across at the young man who grew up in foster care and is now a certified nursing assistant, a huge accomplishment given how his life got started, and without singling him out I wanted to let him know I knew how important his job was no matter where he might be on the totem pole at work. I found myself talking about Noel.

Noel Cortez was a CNA at Stanford assigned to the room I was in when I was near death from my first big bout of Crohn’s. He had lost a niece, a small child, to cancer and kept her picture with his badge to remind him, he told me, of why he does what he does. The care she’d gotten had inspired him to get the training for that job, and when I met him he was applying to nursing schools as the next step.

Noel was both a deeply loving human being reaching out to others in their own pain and one of the funniest people you could ever hope to meet, and since I was probably his sickest patient he spent every spare moment he could with Richard and me, keeping both of us laughing at a time we thought we never could again.

Laughing while the body was trying to ebb away somehow offered strength that I didn’t know was still in there somewhere.

I talked, too, about the doctor who had needed me to live, and who cared just as much and whom I couldn’t let down so I did.

I said, Their kindnesses offered hope when I most needed it. Hope offers life. We can never know just how much it means to someone else when we reach out to them but it is never, ever a small thing when we do.

And with that my time was up and I sat down.

Still fevers, still needed to crash mid-day but at least I managed to read half a book this time rather than falling asleep. “Complications: A Surgeon’s Notes on an Imperfect Science.” 

My surgeries were seven years after Gawande’s book came out. Maybe that’s why Stanford asked me to sign a waiver before they let anyone new to the knife anywhere near me. (I signed it, with some qualms.)

I could tell them what was really done well and what could have been done better, if I only knew how to. I at least got to meet the one doing the asking to be part of the surgical team.

Nothing serious at all, just, it’s easier to learn the longterm effects if you actually get that feedback, which there is no way to offer. I don’t think it occurred to them that patients would know anything.