The waiting room
Feathers fluffed against the chill, relaxed.
Yet again debating whether to say anything quite yet. It was December 16th that I was given the first heads-up that something was off–but possibly not much. You’d better go. (Make up your mind.)
I waited this afternoon for the time to hurry up and finally finally get here, trying to knit my way to calm, finding the last hours to be the longest.
I glanced up and to my surprise, there just outside was Coopernicus perched on the big pot my extra-dwarf cherry tree is planted in, facing me.
I finished a 400+ stitch row, a small bright growing bird’s nest in my hands in the cheering color (thank you Lisa Souza) of a bright summer sky, and looked up again.
There he remained, steady and firm, watching over me. It was very moving. He didn’t mind my taking his picture, whereas in years earlier he would have objected to a black object being raised near my head and pointing at him. I moved around the room, trying to get past the effects of the double-paned glass. His face turned to follow my gaze.
I smiled and went back to my project, determined to make visible progress.
Another row. More photos.
Another row. And at that I let him be. I emailed a friend to say how grateful I was that he’d been there easily an hour now in raptor attentiveness–and hitting send, I looked up, and at the suddenly empty space wished I’d seen him go but was glad for what was.
And with that I went off to meet the doctor who did a bone marrow biopsy on my daughter ten or twelve years ago.
He asked after her. He was thrilled at being handed that printout of her dissertation. I was thrilled at seeing the Johns Hopkins plaque on his wall–how perfect was that?
He was a dear. Did this have anything to do with the Graves’ diagnosis last week, I asked him? No. But so this is probably nothing, right?
He looked me steadily and gently with a long-practiced eye at this sort of thing and answered, We do not know that yet.
More tests were done. Another will have to be done at the hospital. And soon we will have answers.
And then, coming out of there, I ran into a favorite teacher all my kids had in high school and seeing each other in that department, there was no need to dance around reality. I was in the testing phase. She, not so much. It was a relief to her to be able to ask after each of my kids, to celebrate with me where they’ve gone on in their lives since she’s seen them, to hear me brag to the nurse who showed to take her back to her appointment that my kids got to have her as their teacher. Just the best.
She got a break from it all in those moments. And I knew the words to come for me might be much gentler than the ones familiar to her by now. But we shall see.
Among friends
Went to my lupus group today and it was a small one–just four of us.
In a long conference room at El Camino Hospital that utterly swallows sound, with that few people, it was easy to ask them to repeat and speak up when I needed them to; I wasn’t depriving any new patients of desperately needed information or of their chance to vent by taking up too much of our allotted time, I didn’t have to worry about impatience, it was just old friends coming together again. One woman in particular I have never seen so relaxed, laughing. We reminisced. We caught up on each other and marveled at how some things had turned out okay after all (Joe and the furnace spewing carbon monoxide, I’m looking at you–thank you all over again.)
And I looked around and thought, we’re survivors. And this is why we come: to show the young patients they will get through it. We did. We do. So will they.
But today we could just simply be, and be together.
It was just what I needed.
Well we needed a little Christmas right this very minute
HE’S HOME!!!!!! They were going to keep him till the middle of the grandsons’ visit, a whole ‘nother five days, and yesterday when he said, So I’m going home tomorrow, right? the nurses were sympathetic but the doctors gave that idea a yeah right look.
So I was not at all expecting the call at 12:15 this afternoon saying they were sending him home and he was getting ready. Then immediately came the message from Phyllis and Lee saying they wanted to go visit him.
–Well actually….
I had been wishing hard that I didn’t have to make that long walk in the sun at the highest-UV part of the day, solstice or no solstice, and there they immediately were on the phone with no idea I needed them, offering well then, let us help you out with that. And so they drove me to the curb and waited. Circled when they had to and came back and waited patiently some more.
It’s always a long wait. After awhile I went to the nurses’ station and asked with a grin if I could bum a wheelchair and wheel him out myself? (One is never allowed to walk out on one’s own, an employee must wheel you out.) They laughed and called down again and ten minutes later there you go. Took an hour and a half for me once, so ten minutes is practically the speed of light.
And then just to top it off, when we got home Phyl and Lee asked a few questions and then went into our garage (brave people) and wrestled the fake tree out of there and the wires to the darn thing and set it all up for us, upright and lights on and there you go.
I was expecting to have a grand total in the decorating department of a Christmas quilt on the floor with post office boxes on top. By myself. Whoopdedoo. And then head over to visit him at Stanford.
He looks great. A friend was throwing a get-together tonight and he wanted to go and so after a few hours’ lying down here to rest up for it he had a great time, and Nina and Rod were there and offered Christmas dinner if we would throw in the oven time since theirs wasn’t working. Hey! Twist our arms! It will be a great day well spent.
And, bless the poor old guy, now I don’t have to be in the same room for hours every day with a patient on the other side of the curtain with pneumonia and a 102.5 degree fever–in my autoimmunity, that was really really really not a good place to be, but since it was my husband on our side of the curtain there was no question but that I was to be there. I confess I would have been there more hours had it not been for that.
The new hospital whose foundations they are now working on will all be private rooms to stop germs from spreading between patients so easily. They can’t build it fast enough.
My Richard is home. I wore a Christmas sweater a dear friend gave me years ago, and the good Jewish wife who’d been there day after day too with who knows how much more to go whose elderly husband lay in that other bed and whom I fervently wished could be taking him home too wished me a heartfelt Merry Christmas as we went out that door free.
Family medicine
If you’re local and you need a piano tuned, you need this guy. He’s the best.
And then later this afternoon…
I don’t remember what I saw him for; just the reaction years ago of this family practitioner, the most gentle and caring doctor, asking, Is there anything else going on?
I could only laugh. He’d seen me previously as the on-call when my children had been babies running around his legs in the examining room, so he did know my face, but not that I’d since been diagnosed with lupus. And then asthma. And then nine years after the first, Crohn’s.
His shoulders fell, his pen went quiet on the page, he looked at me steadily as he took that in a moment, knowing I still had children at home to raise at the time. A bit of wonderment at the relatively-healthy-looking woman of good cheer in front of him, then, “You’ve got a full plate.” As simple and direct a summing-up as I have ever heard.
It was one of those moments where someone says the right thing at the right time in the right way and makes everything okay. I have never forgotten it.
Michelle was having post-accident problems that warranted being seen again to make sure there wasn’t a break, so we took her to the clinic. The nurse took her back to where they did x-rays, they talked about physical therapy; we waited. I knitted. Made good progress on the thing, too, to where you could actually see what the lace was going to be when it grew up.
She came out with one of those clunky black strapped-on one-size-doesn’t-fit-most thingummies on her foot, and while she was filling us in on the visit, turned out he was again the on-call doctor covering for today and he came out to greet us and I wonder whether to see if we her parents were who he thought we would be? But he had one more thing to mention re her knee, so he came and good, we hadn’t left yet.
He’s Richard’s regular doctor, he’d seen me back in February and remembered the days, and there we three were, here still, together, supporting each other…and he was beyond delighted, a moment again of stopping and taking it all in–in joy this time. I could just see the wow, she’s not a baby anymore! twinkling in his eyes.
To life!
Resting up
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.
It’s not the only disease
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.
And the three billy goats’ fluff
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.
The lightbulb, it goes on
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.)
Just a bite
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.
Coon found it all
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.)
Splintin’ images
Sunday June 30th 2013, 10:50 pm
Filed under:
Lupus


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.)
The pastry connection
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.
Jazz solo
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 IÂ 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.
Pass the lemon juice, Honey
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.)
Stole my heart
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 s
o 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.