The alarm, it had to go off early again–he had an early meeting and my alarm has the siren song that can wake the deaf.

The lupus, it flares. But at a reasonable level: too tired and achy to do much today except put up my feet and knit.

Which I did. Wow, look at that ball of Silkpaca laceweight disappear. So, so soft.

Meantime, a few more photos to show off from our trip. Big brother, little brother.

On my way there I said a prayer for every member of our group, the ones who come, the ones who don’t, whoever might show up. I figured we could all use such good thoughts anyway, so, yeah.

She’s said it to me before in private. I was shocked speechless at both the words and the fact that she slammed her heavily damaged, arthritic hands to make her point as she said them: pain on pain.

But this is the first time that I know of that she said it to the whole group.

Lupus Support Group, Conference Room B. There were eight of us today. Six are mothers and one clearly, from things she’s said, would have liked to have been.

And then there’s M.

M fiercely believes that we could eradicate the scourge of lupus once and for all–not by research, not by medical advances, one of which we had just been discussing, no, what she said was, if lupus patients would just STOP. HAVING. CHILDREN.

And right there next to her as she fiercely derided most of us was me on one side, mother of four at the time of my diagnosis, and MK, likewise with her grown four and with her sweet three-and-a-half-year-old granddaughter in tow. Who’d been charming the socks off everyone, including M. I hope that little girl didn’t catch on that her grandmother was being condemned for her very existence.

The kicker is that lupus is not actually known to be genetic. The susceptibility to it seems to be inherited, but not the disease itself.

The others were taken quite aback but I’d heard it all before, so I smiled and responded gently, “Actually, I think lupus is what I needed to grow up.”

And I went on to describe how I had learned to be more the kind of person I wanted to be, kinder, more compassionate, more aware of others’ needs, because of the things I’d gone through via illness. (The stories I could tell! The people I would never have met but for…Like right here in this room, including, yes, her…)

I bragged on my kids by quoting Mrs. Russell, who had taught them all in elementary school; she’d taken me aside one day, well after my diagnosis, and told me that my kids were more empathetic to those around them, kinder….

The lupus, I said, had played a part in that.

“We all have something,” I added.

Another woman nodded, “The seeds of our deaths are in our births. It’s part of life.”

Another woman gave her own example of why it was okay to have had to go through all this.

I picked Richard up from work a few hours later and I was still struggling not to steam over the cluelessness of the woman’s unfathomable insult. I honestly don’t think she knew she was being insulting, though, and it was clear she was incredibly lonely, in too much pain to see beyond herself, and though she would never agree, it was very clear to me that in her old age she deeply regretted not having had children. That lashing out was her only way of dealing with it.

She needed a friend, not someone who took it personally and got angry back. (Rereading this draft before hitting publish, I feel that having written that out loud after these hours have passed, I am finally free of it.)

I hope what I said helped. I do know that I said it better in the moment it was needed than I of myself could have done, alone.

Just need to run the ends in on the baby blanket–tomorrow. But the knitting part, it is done.

The cashmere-blend Epiphany yarn on the next project is down 28 grams and going fast.

And for a little fun: someone among the ironworkers repairing the old Bay Bridge after the Loma Prieta quake  of ’89 had an artistic side. Permission was not asked, and good thing, because state officials said it would not have been granted–but a troll was created and the workers welded it in place underneath the roadway. A little public art to brace against natural disasters. To stand guard. Ships passing below could see him and apparently the traffic news helicopters could zoom their lenses to him but I’d never heard of the thing till now, when the current ironworkers refused to let him be gone with the old span that was just relegated to history this past weekend.

This time Caltrans got it right. The little troll, our local man of steel, is to be saved for a museum still bolted to his piece of his bridge and according to the LA Times, officialdom has now asked that, given how trolls traditionally go with one bridge and one bridge only, and that ours has done such a marvelous job of protecting all from natural harm, that a new one be created for the new bridge. Of steel, in a place protected from the sun (a troll after my own heart), and they offered that it might be made by the ironworkers, or someone in a non-profit industrial arts class in Oakland, or…

On the sly. Don’t tell them. Just go for it.

Cue the Habu Textiles folks! That steel laceweight yarn I could never see a reason to buy at Stitches–it’s windy on that bridge and you know a little someone will need a good scarf.

My brother and his daughters are coming in two weeks. They are driving from Colorado. We shall tour the Aquarium with them. We can’t wait!

And it dawned on us tonight that that means the yarn room–you know, the one with all the projects for book one and the successes and rejects and hmm maybe I should improve on this ones let me think about its for my long-delayed second book idea, plus the yarns to go with, all of it has to be emptied and put somewhere else–and not in the other two bedrooms they’ll be staying in.

Oh goodness.

Not to mention the fact that a friend was desperate to get rid of her late grandmother’s hospital bed as she closed down her house for selling, and it happened to be between when a doctor sat me down and explained to me just what that scan showed, trying to prepare me for the news, and when the biopsies came back–and they were negative. By that time we’d already helped the friend out and taken the thing off her hands on the grounds that it looked like I was going to need such a thing.

And having not gotten rid of the old twin bed in the yarn room yet, we simply put it upside down on top, mechanics-side up. Where else you gonna put it?

I wondered if we should pass it along now that we didn’t need it and my husband thought bluntly that given the last ten years… Yeah, might as well keep it so we have it when we need it.

Or not. We could figure it out later, there was no hurry.

But in two weeks…

Which is why I was sorting socks. Makes sense, right?

(Edited to add: there is no basement. There is no attic. Not in this California Eichler.)

It had been awhile since a good Trader Joe’s run, and it was time to stock up on the honey mints that I reward myself for treadmill time with, bags of frozen fruit for making crisps with, organic sugar too, dark chocolate salted caramel peanut butter truffles. And ginger cookies, one of the few worth buying store-boughts over, don’t forget the ginger cookies.

No we won’t eat them all at once. I promise.

I got in the checkout line of a middle-aged clerk whose cheerful face I have enjoyed for a number of years.  She was being given a hug by a quite young fellow employee about to leave–the job, the area, her friends,  on to her new life, and I waited, not wanting to interrupt nor put any pressure on them.

Ah my. Back to work now. And the older woman turned to me, emotions close to the surface, and asked, It’s been awhile. How are you?

I’m fine, I smiled, and you?

Good, thanks–but no really: how’s your health? You doing okay?

I so was not expecting that. But instead of feeling intrusive, it felt like a tap on the shoulder reminding me how good I have it now, and I really meant it when I said thank you. To reassure her, I gestured towards the two bags she’d just filled and told her, “When life is good, you buy the fun foods,” and she laughed in relief–and at the truth in the thought.

———

And while I was typing that, a small finch hit the window and was laying on its back a few feet away from me–I thought at first dead, but no: its tail quivered.

A towhee, a gentle, bigger bird, reminded me in that moment of that clerk as it eyed me quickly to be on the safe side and then hopped down straightway from the box and it went directly to the finch’s side and sang–encouragement, to my surprise. It was not a bird that posed any danger to the injured one, but I did not expect it to matter to it that the little one was hurt. Clearly it did. Get up, get up, the hawk might see you.

Then the towhee flew away.

The finch pulled herself to upright and watched me for awhile. When I blinked, she blinked back. I kept my eyes shut longer to try to encourage her to rest. She did.

Good. Not blinded by the impact, then–that’s the biggest worry.

And when she was ready, sooner than I expected, she too flew (I saw that wing tucked partly across her earlier, I’d have thought it was broken, but no) and was off and away and okay.

Happy Fourth!

And my apologies for forgetting to say that in last night’s post. Yesterday shouted reminders that I do, in fact, have lupus, brainstem no less, and it was a distraction.

Today was better.

Learned something new today. To quote Wikipedia (slightly shortened):

“The most important sense for the raccoon is its sense of touch.^[52]  Almost two-thirds of the area responsible for sensory perception in the raccoon’s cerebral cortex is specialized for the interpretation of tactile impulses, more than in any other studied animal.^[56] They are able to identify objects before touching them with vibrissae located above their sharp, nonretractable claws.^[57] The raccoon’s paws lack an opposable thumb and thus it does not have the agility of the hands of primates.”

Whiskers on their paws? Curious. And they show a picture of one up in an apple tree. Bingo.

The paws on ours seem pretty agile to me; the little Tarzan both charmed and aggravated by figuring out how to pull the clamshells apart at the center to raid the apples. There were two clamshells that were still on the tree, still closed shut–empty. And bent open at the middle just enough for me to picture the thing going Yow! as it snapped to on its paws–but it did it again.

The others were left alone so far.

And so last night I experimented: I taped the clamshells shut at the center with clear shipping tape.

So far so good.

After checking on them tonight, I ate my very first homegrown blueberry ever, and although it was supposed to be a small wild blueberry and I expected tart, it was sweet and it was good; our heat wave probably added to the sugar content.

The critters haven’t discovered those yet.

(Edited to show off and add a link to my nephew, one of my sister Anne’s boys, playing a composition of his.)

Someone recently asked me about my hand splints. I’ve mentioned them a few times but realized I’d never actually shown what they look like.

When my lupus was diagnosed I had severe arthritis in my hands–inflammation severe enough to worry about permanent damage as the swelling pushed the ligaments apart. And I could not take NSAIDs. I got sent to a physical therapist who specialized in hands.

Okay, hold your hand out, thumb up, pinky down: she taught me, never hold things in a way that will push your fingers towards your pinky finger in that position–always hold things with the flat of your palm from underneath. Think shopping bags, a pot filling up with water at the tap.

And she custom-made me my first set of these splints to wear at night to keep my fingers from curling up in my sleep. Heated the plastic, wrapped a sheet around each arm one at a time, measured, penciled, cut, folded back the edges so nothing would be sharp when it cooled and went firm again, then added the padded velcro.

They don’t go to the tips of my fingers because you want to be able to pull the bedding on and off or up and down or whatever, but by going to the middle joints and bending the palm parts slightly backwards, it positions the hands just so. Take old loose cotton socks and cut out the heels and toes to wear as liners.

I was eating with plastic utensils because I couldn’t bear the weight of metal ones for the pain. How I managed a two-year-old in diapers I’ll never know, but you do what you have to do.

She knew her job well and she gave me back the use of my hands, so much so that she gave me back my knitting.

And then her son took a job as a cop and she became a 911 dispatcher so she could always know how he was and I had to find me a new PT to make these. I’ve wished her and him well all these years, wherever they are now; she was the first person to tell me about the therapy pool that was open to patients only. That helped too.

The plastic ages over time and 23 years later, I’m on maybe my fifth pair. This set’s on its last legs–the plastic is beginning to shrink up around my arms a little and it could start to crack soon, time to make an appointment.

Best anti-inflammatory ever and you can’t beat it re side effects. Sometimes simplest is best.

(Meantime, the latest of Eric’s peregrine falcon photos here.)

Several years ago, I was at the Copenhagen Bakery and Cafe in Burlingame and in their display case was something that said, if I remember right, Baker’s Surprise. Or else Chef’s Surprise? They looked good, so, I bought some–and at first bite instantly wished I’d bought many, many more and that the place was much closer to where I live. Picture a crunchy amaretto cookie filled with sweet almond paste done just so, perfection in a confection.

Somehow the memory of them caught my attention the last couple of days: to the point of emailing the bakery, describing the things, and asking if they still made those? It would be worth the trip…

I haven’t heard back so far but I wasn’t really expecting to. Just encouraging them and hoping. If only. Maybe actually drive up there some day this coming week, if they answered? Somehow I just really wanted to go there.

Richard and I were out looking at flooring store after flooring store today, trying to decide this option vs that, and it was getting dinnertime-ish. We bought smoothies to tide us over and to get a chance to sit down a moment.

I mentioned that bakery and those cookies, and somehow on a whim he chimed in, Sure, let’s go!

It was about 35 minutes up the freeway.

The street it was on was closed and torn up. At least some walking in the late sun would be involved.  We shrugged our shoulders and carried on. The parking lot was full? Someone pulled out just at the right time, there you go.

Now for the backstory that we didn’t know was going to have anything to do with this: Katie, about our age, has been a teacher and mentor to some of the teenage girls at church for some time now, and one of them was being raised by her great-grandmother. Who recently had had to move to–where, I have no idea. But it’s hard to graduate from high school and have to have a new place to come home to, hard to have your mom figure aging and more than anyone else’s that you know, lots of changes flying at the kid all at once.

Katie had kept tabs on her, and it turns out she’d invited Helen to dinner tonight. She knew the best bakery in the Bay Area and it had a great cafe, too.

They were in disbelief at seeing us walk past the windows. Katie leaped up to say hi, and there we were coming into the bakery part at the next door down. There was this, What are YOU doing here! moment of surprised delight all around.

We bought our pastries–the guy grinned and proudly pointed out the amaretto/almond paste pastries when I asked, blueberries in them too now, and wow, they were good, he was right–and we went over to their table.

Helen! We were so glad to see her. Katie, too, but Helen was the biggest surprise. *So* very glad, how ARE you?!

And how often do teenagers get to see that the adults they know feel that strongly about them? That they are loved, that they matter, that it doesn’t matter that they’re not family. To see that age has  nothing to do with degree of friendship–that she was absolutely as important to us as Katie. Go Helen!

To Copenhagen: thank you beyond words, and please keep up the good work. We will be back.

Two blog posts. Do I post this one? (I’m not sure.)

I told the nurse that the cardiologist she works for is so soothing. But if you want me to come in about something, I told her, you have to worry me about it or I’ll blow it off: I’ve had lupus a long time. You get pretty blase’.

She chuckled and handed the phone straight to the doctor and let him deal with me directly. He did not worry me this time either, rather, he said that that kind of description you’d have to have narrowed arteries for it to be a heart attack.

Do I?

No.

Well then, it was a lupus hit-and-run and it’s over now, right?

He thought so. Added the usual, But come right in or call 911 if anything else…

Dude. If I’d been able to call 911 at 4 a.m.-ish Sunday rather than just living through it, I would have. Well maybe. As it was, I had decided I really did need to somehow wake Richard up to call after all–and immediately it let up. Poof.  Over. Lack of pain never felt so good. So I figured, stupid lupus inflammation, and went back to sleep.

“How are you feeling now?”

Fine! (Explaining the excitement in my voice) And I  just got a new grandson!

He chuckled. He’s so looking forward to that stage.

Or do I just post this one?

When I wrote about the Dancing Queen amaryllis the other day, I promptly got the ABBA song of that title stuck in my brain. It is safe to say I have never cared for that song.

I woke up in the morning and the darn thing was still playing in my head. There was only one escape: replace. I put Carlos Santana on first, a little bit louder than I intended to. You’ve got to change your evil ways! Baby!

Which is how I finally got myself to sit down with the latest yarn and start the knitting that I so much needed to do. Music is Pavlovian: I can’t have it playing and read, rather, it demands that I sit and absorb every sound I can, and I can’t just sit there (at least in my own house) without making something in my hands to the rhythm of the notes.

I ripped out the beginning four times but got past that and kept going, making this project up as I go along, something new, writing it down. Crossing that out. Tinking back. Getting it right.

I had been missing that compelling sense of purpose to the work that comes with a good project. It’s such a relief and a comfort to dive back in. I heart knitting.

They grow so fast…

Yesterday’s Tropic Snow peach is noticeably bigger than yesterday and the last of the flower that was attached to it is gone. It’s almost April and it’s supposed to be ripe in June, so I guess it’s not wasting a moment. I stuck a finger down into the dirt, which could use some mulch: good. Still moist enough, don’t have to water yet.

I saw the beginning of two on the August Pride, too; they weren’t discernibly certain yesterday. Now they’re well past the just-a-guess, along with the new green plum needlepoints on the tree facing them. That little bit of rain last week didn’t hamper those blossoms after all.

I really like that planting those peaches has gotten me in the habit of walking around the backyard in the evenings and taking in the green and the growing and claiming it for my soul. Watching a bit of God’s knitting coming to be as the daylight stretches slowly longer.

Meantime, it looks like I’ll be able to make the baby afghan go further down towards my feet than I had thought the yarn would be able to reach to, good, and…after a week of dodging it, I’m finally catching Richard’s bug. Hoping that a cold will just be a cold.

(There was a get-together tonight that I was really looking forward to. My chocolate torte got delivered but my conscience needed me not to share the germs and I walked the garden here instead. To the vector, go the soils.)

Who knew that blueberry flowers look like bluelessberries?

Ellen is the friend who asked to borrow the autoharp, and late this afternoon, her husband called and asked if he could swing by to pick it up?

Sure!

Allen showed up with the baby in his arms and daughter and son in tow of about three and five. It had been eight years since they’d moved out of our ward so that we no longer got to see them at church every week. I hadn’t met the little ones.

The five-year-old wanted to show me why that autoharp was going to be appreciated for the week it would be at their house. He sang me three verses of a song; I smiled my biggest grandma smile. How often do I get to be serenaded by small happy people? The baby thought this was great and grinned back.

Then the middle child needed to give it her all, too, and she sang me a wobbly I Am A Child of God.  Sweetie, you most definitely are. So cute.

The big brother had another go at it, and all the while I was standing in my doorway ready to walk the autoharp to the car because the dad’s arms were full, while the sun–late sun, but sun–was beaming in.

They had no way to know.  I kept expecting it to be over while not wanting it to be over and the dad needed to be on his way, so coming in awhile wasn’t happening. Had it been noon, I would have said something, but at that hour, I hoped the risk was small–after all, I would be out in another half hour or hour snapping quick photos of my blueberries and plum tree, right?

The little girl held my hand as we went to their car. She asked as she climbed up into her carseat if I would come with them? But no.

We had made friends. I am utterly charmed.

“In 2001, the Faustman Lab reversed type 1 diabetes in mice with end-stage disease, a project that is now in human clinical trials.” That really got my attention: there is so much research that never succeeds that far. They hope to expand their findings to other autoimmune diseases, lupus and Crohn’s specifically mentioned. Hey!

My cousin Heidi was diagnosed four years ago, out of the blue, with Type 1 diabetes, the autoimmune version of the disease, and her husband’s employer donated an Ipad Mini for her to raffle off towards raising funding for that lab. The link goes to her blog post about it. Heidi asks that people donate directly to the lab, no middleman on her part, three bucks per chance, you get the tax write-off, and then come tell her to be entered in the raffle (and to honor the legalities of it, there’s a no-money option).

And just for fun, in addition to changing the world for the better, someone gets that Mini. You can name it Cooper.

Did you see the multi-color igloo made from water-refilled milk bottles left out to freeze in the cold? Great fun. All that food coloring is going to make for some great Easter grass in the spring. Ironic that the guy’s name is Gray.

Meantime, a box arrived today with its label on upside down. The UPS guy carefully set it this end up, leaning against the window, up-rooted inside, rang the doorbell and was nearly to his truck when I got to the door and saw what it was. “THANK you!”

He turned, surprised, and waved. (New guy on the route.)

I waited and waited for the sun to get lower so I could go out there. I pushed it a little more than I should have, but I so wanted to go see if I could do this. By myself.

Three holes got dug in the good soil of the raised bed left behind by the long-ago previous owners, better gardeners than I. With apologies to the neighbors who were hoping to have branches on their sides of the fence–these were better spots. I didn’t put the peach trees in quite yet because I wanted to give Richard a chance to go over placement if he wanted.

It wasn’t till later that I moved just slightly so and my back suddenly gave me what-for for all that spading. Oh, now you’re complaining?

And I don’t care. I iced it. I get to grow my own peaches forever after, Tropic Snow for June, Babcock for July, August Pride to finish off the summer with. How cool is that?! What on, well, earth did I wait so many years for?

I had ignored the reminder message for quite some time:  the rheumatologist likes to keep semi-annual tabs on me whether I like it or not.

Don, do you remember from the pool… I will forever remember what a woman there I had always thought of only in terms of being a very sweet, kind old lady once related to me. She had long been severely disabled by juvenile rheumatoid arthritis. She had gone in to see her rheumatologist after a long absence and he’d demanded of her, “Where have you been?!”

She retorted sharply, “What have you  learned?” If he couldn’t do anything new, there was too much life to live to bother with being reminded again and again of what she couldn’t do, so, hey.

As a newly-diagnosed lupus patient at the time with Crohn’s soon to come, doctors aside, she taught me a valuable way to look at this chronic stuff. Just go live!

I should add that in the 24 years since then, the medical field has learned a lot about her JRA, actually.

Well anyway.

So I went in today. And asked the doctor how he was doing.

“Busy.”

Oh?

He told me he was now coaching his daughter’s basketball team.

Cool!!!

He was pleased with how pleased I was with that, so he asked after my grandson and then asked if I were doing any writing; somehow that became an opening for me to tell him about the Warm Hats Not Hot Heads project (which I totally mangled the name of, trying to spit it out, giving him an on-the-spot example of lupus brain fog) and how we knitters had knit a hat for each member of the Senate and a goodly percentage of the House; I gave him my line about “to tell them to put a lid on it,” not the most, um, diplomatic way to describe it, and he laughed and added, “And get to work?”

“Yes!” My turn to laugh.

So we didn’t come up with any magical cures today. But I came away feeling heard about the medical stuff that I honestly didn’t particularly want to talk about because we had heard each other out on a few of the important things near and dear to our hearts. Which made the rest easier to discuss. (Stupid chest pains. He looked up the cardiologist’s notes and reassured me. The cardiac cough is in remission, always a good thing.)

Okay, then.  I’ll see him again in six months.

This is the weekend, at last. Our Sam will be in a walkathon for lupus on Saturday. All proceeds go directly and only to funding research into the disease, with all administrative costs being donated. And that funding is the only reason why we have Benlysta, the first new lupus drug since 1955 and which was approved by the FDA last year.

And Benlysta has made all the difference in Sam‘s disease, whose lupus likes to attack her platelets.

I posted about it before, and you good people shot her up to being the #6 fundraiser out of everybody participating.  I so wish I could give so much more; you all did what I could not. Thank you does not begin to express my gratitude–you all are wonderful.

I notice there’s a new person on her team with zero dollars so far. Hmm.