The day after
Friday April 23rd 2021, 7:53 pm
Filed under: Crohn's flare,Lupus

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.



Eyeballing that amount
Saturday January 09th 2021, 9:08 pm
Filed under: Crohn's flare,Lupus

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!



Clafoutis for all that ails you
Friday December 18th 2020, 12:14 am
Filed under: Crohn's flare,Family,Food,Friends,Recipes

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.



The talk
Sunday February 10th 2019, 11:18 pm
Filed under: Crohn's flare,Family,Life

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.



On being the old camera film that waited for development
Wednesday October 10th 2018, 10:22 pm
Filed under: Crohn's flare,Life

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.



Paul Kalanithi. And Jason.
Thursday August 09th 2018, 10:39 pm
Filed under: Crohn's flare,Friends,Life,Lupus

A book or the baby blanket project…

“When Breath Becomes Air” won. Written by Paul Kalanithi, whom I first stumbled across in a New York Times article. He trained as a neurosurgeon at Stanford alongside our friend Jason, which I knew was going to make the book feel very personal. I watched Jason’s family go through that hard long slog; when Jason’s training was finally over, he took a job in upstate New York and his wife Sheryl, who loved to garden and did what she could while living in a rental here, gifted me with several large flower pots when they left. I have raspberries in one and a squirrel-surprise fig seedling in another to remember them by.

When Kalanithi wrote of going out with his wife to a great barbecue place, I thought, I just bet you that was Armadillo Willy’s. California does not do barbecue like the South does but that’s the one place I know of that tries.

Kalanithi wrote about what it’s like to be diagnosed with stage four lung cancer at 36 when you’re so close to achieving all that you’d hoped and worked towards but then life flips the tables over and everything spills off.

I remember Jason coming into church once, which was always notable because during those residency years he so often couldn’t take the time off to. He looked down, and it could have been just the endless hours of it all–and yet.

So I asked him.

And he, knowing that I knew the inside of Stanford Hospital well, just spilled: he’d had a patient, a lovely woman, cheerful, happy, healthy all her life, (and it was clear he really admired her and loved her) and all the sudden there she was needing brain surgery and bam just like that despite all his training, despite all his years of preparation to be able to help other people in moments like this, there was suddenly no more they could do and to his great surprise she was gone. Gone. How. It had just happened and he hadn’t had time to process it yet. He wasn’t sure right then that he could process it–it just didn’t compute. Sixty years old–so young.

Looking at this love of a human being himself, my reaction surprised him. I was in my early fifties, so an endpoint that seemed so close to him in his thirties was a lot closer to me. But still, I was going, Sixty. She made it to sixty in good health. How would it be! I marveled rather than ached, and told him, That’s really cool, I’m so happy for her. I’m sorry she’s gone but I’m glad she had such a good life!

I was picturing all the things one could do if, say, one could be a normal person who could be out in the sun. No lupus. No Crohn’s. You could travel. You could go to the beach and not just right at sundown. You could play with your grandkids on the grass at noon, you could celebrate in any way and at any time you wanted and the fact that she was such a good person while living that life… And then blink and it’s over and you don’t even have to do much of the suffering part in between.

To have that reaction out of someone so close to his patient’s age–that was exactly what Jason had needed. The gratitude. And towards him, too, for having been there for her when she’d so needed him. It turned it around for him completely. He had done his best and he had been there for her and what he could do and be had been enough.

I think both of us will never forget that moment.

Today, at long last, I read his friend Paul’s posthumously published, beautiful, heartbreaking book, a love letter to the daughter he would never get to see grow up, and wished Jason and Sheryl were still here to talk about it with. About their friend.

But life changes and people move on.

This I know: we will see each other again.



Who? Beads me
Monday May 21st 2018, 11:00 pm
Filed under: Crohn's flare,Knitting a Gift,Life,Lupus

Well, that was a surprise.

I got a lovely note today and had no idea who this person was; I had to scroll down through the email chain, trying to figure it out.

Two years ago a friend had given me a big bag of craft supplies she wasn’t interested in anymore, nor was I, but I told her I could post it on Freecycle.org so that she could know it would go to someone who would be glad to have it. There were quite a few beads in there and someone could have the fun she’d hoped for when she’d bought it.

And so I did that.

I’d long since forgotten all about it.

The note was from the woman who had gotten that bag. She was no longer a medical student here but now in residency at the same school where my brother-in-law did his. Cool. But I remember the descriptions of what it was like to be in training as a young physician and the severe lack of personal time it entailed and I’m not surprised it took that long for her to really search that bag.

But yes, she had held onto those craft supplies while moving halfway across the country to her new place.

And only then did she discover that, by her description it sounds like I gifted her with a cowl along with a note that meant a great deal to her, whatever I said. She is studying the specialty of one of my favorite doctors, and if I didn’t then I did today, telling her what a difference he’d made to me and wishing her well in her life. She was very touched (and here I was, reiterating that message, I’m sure.)

I don’t remember doing that. But I know I would be doing exactly the same thing all over again if given the chance–with a plain-vanilla-wearable-by-anyone cowl at the ready, or any one that just felt right. Because one of my doctors–and because of Rachel Remen’s stories on the subject–taught me what a difference it can make to a physician to know that there really are patients out there who appreciate what you go through as you aspire to do right by humanity, the whole reason you went through all that you went through to get to the point where you could offer of yourself and your life like that.

That they’re not forgotten when the medical crisis is past.

I wonder if maybe, just maybe, two years ago wasn’t when she needed to hear that message: maybe today was. I have watched life dance to the choreography of G_d enough times…

Knitting is love made tangible. Even if I wasn’t ever her patient, I know well the life of a patient. And I know it’s not always easy to be a doctor.

I’d better get to it on the next cowl to have it ready to send out into the world.



A brief interruption
Sunday January 07th 2018, 11:54 pm
Filed under: Crohn's flare,Food,Knitting a Gift,Wildlife

Quite to my surprise, my stomach demanded a divorce from dinner. Richard is utterly unaffected. Maybe it was (hopefully it’s only) the recalled romaine lettuce? It arrived in a produce box, overnighted in the fridge, but all I ever did with it after that was I threw it away after I read the recall alert and quickly washed my hands.

I think I just need a good night’s sleep. I’ll tell you the cowl story tomorrow. It’s a happy one.

Oh and–there was a new chunk out of the pumpkin too big to be from a squirrel.

The skunk smell was stronger inside than outside this morning (I really should not have opened that door) and the car got it, too. It probably took cover under there afterwards.



The Arroyo
Monday October 16th 2017, 9:29 pm
Filed under: Crohn's flare,Knitting a Gift

Right when I first started, there was the occasional black stitch in the yarn: a tiny smudge of dye overload, as if bits of darkened ash to show where this project was coming from.

And yet the further along I go the brighter the colorway gets and the parts that remind one of the recipient’s burned-out landscape fade isolated into the background. Nothing has changed, they’re still there, but now you have to look back to see them. I like that.

I didn’t push to finish that cowl tonight because it’s a one-needle project that’s easy to carry around and I’ve got that delayed and long-waited-for GI doctor appointment tomorrow to take it to. I have another that takes two circs to work with, that takes a moment to untangle the tips and yarn every time I get it out and it’s gently boring in plain cream, so, hey. The show-off Anniversario waits for the morning.

(Whatever it takes to get me to finish the less interesting one. Its recipient needs it, too. She just doesn’t know it yet.)



October skies
Tuesday October 10th 2017, 10:47 pm
Filed under: Crohn's flare,History,Knitting a Gift,Life,Wildlife

We are about 75 miles south of the fires raging in California’s wine country, with San Pablo Bay as a large break of water between here and there.

But the firesky sunset was intense and the clear awning over the patio glowed a deep, unfamiliar bright yellow that was both novel and startling and I could only pray for the people who went to bed in a calm night and woke up to walls of flames coming right at them, neighborhood after neighborhood. Would I have the presence of mind to grab for my hearing aids and glasses before I ran?

It is smoky and thick and smells like burning plastic outside.

Yonder Cooper’s has a tail feather coming in in the center. Like its daddy, when I needed it, there it was and it let me enjoy its presence for several minutes. It is new at that, though, and I am mindful of its skitteriness. Then it lifted to the fence and stayed a bit longer but flinched that the camera had come out while its back was turned.

The second photo was taken trying to capture it taking off. Crouch, wings out, leap! Faster than a speeding iPhone 4S!

Re the Crohn’s, today was definitely going in the right direction. Grateful for that and hoping hard.

The candy-cane-plied red and faintest beige yarn came out looking more brown the further you get from it (and when it’s wet. Which it is here.)

And… The smoke alarm just went off. Oh fun. That doesn’t mean the air is that bad…?

Six smoke alarms and a bit of teamwork later, we have new batteries and we have peace and quiet and we have a definite appreciation for how good we have it that they were not actually telling us to grab whatever we could and run.

 



Hanks a bunch
Monday October 09th 2017, 10:46 pm
Filed under: Crohn's flare,Knit,Life

Crohn’s flares: food becomes hard to digest and you don’t much want to eat anyway (so you try to at least make everything you do eat super-duper healthy.) Yeah, been through this before. And one of the things that happens is your muscle tone vanishes, just vanishes, faster than makes any sense.

Not this time. Not if I could do something about it, I told him last night: and so, treadmill, yes, and I was going to wind up yarn in the morning.

And that is how this 420 gram cone finally got turned into a hank. (Oops, broke a tie there. No, two. It is big.) It’s about two thousand yards and my niddy-noddy holds two at each go-round. Somehow, thankfully, it did not pop off the thing and fall into a million tangles on the floor. (You know, Alison, you really could break the yarn and make it into two or more if you weren’t trying so hard to prove you didn’t have to.)

It is scoured, as pre-shrunk as I could make it, and I may have to take a hair dryer to it. All the better to strengthen those arms with.



The Stitches stash slowly winds its way down. Only the best yarns.
Sunday October 08th 2017, 10:27 pm
Filed under: Crohn's flare,Friends,Knitting a Gift,Life

Those needles I freed up? They had a new project going on them and it probably would have been for the woman sitting behind me–if it had been finished.  I’d rather offer her a choice of more than one color if the one I’m presuming about is not ready to hand right over, so I didn’t say anything to her quite yet.

Three other cowls went to old friends who showed up in town for the weekend, while they were there and I could.  And you know what? It’s really hard to be mopey about what a bad night you had because of the stupid Crohn’s when friends are being totally joyful all around you like that. Hey you guys. That was great. Thank you so much.

I went right home and worked on that new project, picturing all the way the smiles on the friends who already got theirs. They were paying it forward and they didn’t even know it.



So I’d better get knitting just in case (like that’s any different)
Thursday October 05th 2017, 10:06 pm
Filed under: Crohn's flare,Family,Life

The GI doctor could see me today or in ten days but not in between. I should have called Richard from work for a ride but it just didn’t feel imperative and I didn’t.

I spent too much of the night kicked awake, remembering all the times…hoping this would be nothing.

Let’s not. Let’s just really not. (Was it 17 projects, I think was the number, tumbling out of that grocery sack with a list of people I hadn’t found yet but I knew he could, and the surgeon exclaiming, I get to play Santa Claus?! He thought that was so cool.)

A week from Monday hopefully my good doctor and I will have a laugh and a phew! together and that will be that.



Come together
Sunday August 28th 2016, 11:14 pm
Filed under: Crohn's flare,Friends,Life,Lupus

One might think, in these days of social media, that one might never lose track of an old friend. But I did after she moved away a few years ago. She’s a nurse, so over the years she’s understood better than most what some of the medical stuff I’ve gone through has been like and she knows she can tell me about her own.

To my great delight and surprise she was back visiting today and we were passing in a hallway before church started, finding ourselves suddenly together with time and in a spot that was mostly alone to chat in for a moment.

I asked her about that transplant list.

She so loved being able to tell me this: she’s not on it now. They’d tried something new, her lungs had plateaued, and she wasn’t needing to replace them. (There’s always the subtext of, for now, and we both knew it, but when you get good news you revel in it for every possible day you’ve got it. It was an understood thing.) She mentioned a few ridiculously strenuous activities that she wasn’t planning on doing anytime soon, but hey!

I tell you. I went into that church meeting just really, really, really happy.

Then later in the day I headed out the door not to buy, it being our Sabbath, not to make others work for me, but simply to be present. I’d gone in yesterday to buy that one last souvenir skein already.

Purlescence was throwing itself a going-away party. I figured sharing the love was what the day was all about and that there would be a lot of it there, and oh, was there. So many people I haven’t seen in so long–we all wanted to see each other and share the experience, that community in that place one last time. The friendships will last, it’s the meetups that will be harder to come by.

It was good. It was sad. It was wonderful–because it means Kaye and Sandi will now have time to do all that creating that they’ve been teaching so many other people to do for these last ten years. It’s their turn.

And I thanked them yet again for that big basket that had showed up on our doorstep seven years ago filled with cards and best wishes and get-well gifts when I was so very very ill. A lot of people had pitched in on it. I’d felt I had to live to use that buffalo yarn they’d surprised me with just to justify their doing such a thing, if nothing else.

And so I did.



Tuck and Patti
Saturday August 20th 2016, 10:17 pm
Filed under: Crohn's flare,Family,Friends,Knit,Life,Lupus

That blouse I ordered last year turned out to be a little bright for me but I never sent it back, and this morning, somehow that turquoise-blue seemed just the thing. I had reasons for wearing something else but it just announced it was it and it was just plain bossier about it than I was. Eh, okay, then, no biggy. (One of those moments you notice after the fact when it all comes together.)

A few days ago, an ad in the local paper caught Michelle’s eye when I was pointing something altogether different on that page to her: she saw not the planning commission story but the small-box notice from the city that the last of the free concerts in the park for the summer was going to be Tuck and Patti. She couldn’t go, but she definitely thought we should.

And we definitely agreed. It would start almost late enough for the UV not to be an issue, too.

And then I forgot all about it.

We got home from grocery shopping and Richard asked, What time does that start? Do you still want to go?

I would have missed it entirely. I’d forgotten. We should eat dinner…

No, said he, if we want to sit somewhere decent we should run.

Okay, good thing we had ice cream at Smitten on the way home, it would have to hold us.

It was going to be closer to the Bay than we are and it always cools down a lot at night in this area anyway–I delayed us a moment while I went searching for a cowl that matched that blouse. I was sure I had one.

I did, some hand-dyed Colinette silk bought at Purlescence. Pretty stuff, if a bit bright for me; one of those yarns that leaps out at you and says it will be the most perfect thing for…someone… I always thought it would look better on someone larger and darker than me, and pulling it out of its ziploc this evening I found I’d never even woven the ends in. It had never been worn. Richard waited patiently while I did a quick job of that. (Photo of one of the snipped-off pieces.) And then while I grabbed a heavy sweater. He’s a good one.

I always come away from listening to their music wanting to be a better person and we own I think all of their albums. I’d seen them once before, when they played on the plaza at City Hall to thank the town for getting their career started, and at the end that day, when the crowd had thinned and mostly gone, Tuck asked me, clearly sure he did, Where do I know you from?

Around town, is all we could guess.

But it left me feeling a bit of a connection to the both of them.

Loved loved loved hearing them tonight. They went off the stage setup to the back at the end and I was surprised that there were some people wanting to take their picture or say hi but the crowd wasn’t entirely swamping them yet.

I’d already been thinking I needed to say it in as few words as possible so as not to hog their time. The experimental med that could have killed me on the spot, having no real choice–and yet. I had.

Seeing that I wanted to say something, those closest to me gave way and nodded me forward.

I took off that long cowl and said to Patti: “I knitted this silk. I was in the hospital thirteen years ago trying really hard not to die. Your words, ‘I won’t give up, my path is clear’ were part of my soundtrack. Thirteen years!” as we hugged each other.

She took my hands in hers and asked me, her face full of emotion, “And what was your name?”

“Alison Hyde.”

And Patti? If you see this and that’s not your favorite color combination, tell me what color you’d most like and it will come to be.