Thank you, Ruth
Monday February 08th 2021, 11:54 pm
Filed under: Friends,Life,Lupus

Eleven years ago Scrabblequeen Ruth very generously gave me her treadmill so that I could get my exercise while doing the no-sun lupus thing. For which I have been very grateful and I have put it to use day after day year after year–if nothing else, I had to make it worth what to me was her sacrifice.

Starting a few months ago, the belt gradually got a little off-center, but it didn’t seem to hurt anything.

Two weeks ago it was suddenly slowing down intermittently just enough to risk throwing me off it and then it would get going again. A few days later it jammed. It started up again, jammed again, and with that I turned it off afraid of burning out the motor and went and googled treadmill problems.

I think we can fix it, or at least, he can.

We haven’t, though. I am intensely grateful for how much good that exercise has done for me for all this time.

But let me try this a bit longer first.

It wasn’t till I stopped using it–while still having the habit and the need to–that I let myself fully consider the thing.

The floor holds still.

My compensation for my destroyed sense of balance is purely tactile and visual and the treadmill is a distinct challenge on the tactile feedback part. I got good at it–but it required constant paying attention to where and how my body was so as not to fall, and you don’t want to on one of those. There’s more than one way to get tired.

Race-walking in circles entryway/living room/family room/kitchen/dining, I find I’m free to walk faster and take longer strides than I dared before and am comfortable doing so for a lot longer–it’s so much easier for the three-dimensionally-challenged. In these two weeks I’ve doubled my exercise time without having planned to.

But none of that would have happened had that machine and even more, the generosity of the gift behind it not gotten me to establish that good habit in the first place.



Winter spring summer or no don’t do that
Monday January 11th 2021, 11:39 pm
Filed under: Family,Garden,Life,Lupus

1. I did the first shingles shot over a year ago and was overdue for the other one. The healthcare provider’s office popped up an auto-notice that my tetanus expired last month.

You do not get near my grands without being up-to-date, not that we can visit them right now, but that was the incentive for me to get it over with.

The nurse insisted on one each arm, not together.

2. I thought about what Mathias had said. Seed starter trays and soil plugs arrived right on cue. I planted tomatoes (or rather, I tried to, they only seemed to actually be able to go in where there was already a hole at the centers.) We’ll make some green inside, too, honey, I thought his direction. And if they get leggy maybe I’ll even buy a plant grow lamp…except that what they need for growth I as a lupus patient need not to be exposed to, and how do you set up a lamp in this house where all its light would be contained and away from me on a timer. Not seeing it yet. Windows will have to make up for my failure of imagination.

3. I twisted my ankle in a good hard fall, more so than last night’s fall, neither one as bad as Richard’s falling over backwards three days ago, and why are we acting so old like that but never mind, icepacks and ankle braces and I’m good to go and he seems pretty much okay now.

4. And now if anyone asks me if the shots hurt I can say no that’s just the other thing. Go, get yours, if you need them!

5. Icepacks really work. I got off easy.

6. Can’t wait to see those tomatoes.

7. There are some pitted Anya apricot kernels thinking about sprouting in their zip locked paper towels in the fridge. I picked out the biggest. One was twins. I am intrigued as to whether that would have any effect at all on what they grow into, other than that most likely they’re duplicates of each other. There is so much I don’t know. I almost chose a botany major and I have at times over the years wished I had.

I could use me some spring right now even if I have to jumpstart it.



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!



Stand up or deliver
Wednesday December 30th 2020, 12:04 am
Filed under: Food,History,Life,Lupus

Ooooh, thaaaaat’s it… Maybe.

A friend sent a text a little while ago that randomly mentioned the curfew. I checked: yes, we are in the purple tier now with ambulances being turned away from most hospitals so from 10pm to 5am, she’s right, that applies to our county too now.

Meantime on the immunocompromised front, the grocery app said 7-9 pm was the only available delivery slot today. I was hoping for earlier because last time we took that the guy never showed up other than to cancel at 10.

This time they messaged at 8:15 asking about a substitution and got my okay, so clearly someone was at least checking inventory.

At 9:00 it said, “Your shopper has finished working on your order.”

It’s 11:03, we are a mile from the store, there are no groceries, no updates, and it’s past curfew.

If he/she had to drop off to too many places and ran out of time, what happens to the orders remaining? Please please tell me they don’t make the lowest-ranking guy in the system eat the cost?

(Hope he’s got fridge space for it?)

 

Update, just before we hit lights out for the night a half hour later: he was on his way. It came!



Splints
Saturday December 12th 2020, 8:38 pm
Filed under: Knit,Life,Lupus

I’ve mentioned a few times the hand splints I wear at night that gave me back the use of my hands when I was hit with an onset of what was at first assumed to be rheumatoid arthritis thirty years ago and that are still essential to my being able to knit. Custom made. But they wear out. That’s gotten hideously expensive.

There had to be something out there, there just had to be…

Flipping through the pages. Carpal tunnel. Nope. Or rather, yeah some but that’s not most of the problem, those are way too short. For broken hands. Nope. Don’t want it past the middle joints of my fingers but I do want it up to that point. For stroke. Nope nope nope.

Many Amazon search results later, I finally found some off-the-shelf ones that were what I was looking for, just about infinitely sizeable and with the functions I was going to that physical therapist for (details in the review), and my relief was so intense that I wrote the highest-praise review they could ever have asked for–but not till I’d tried them for several nights running to be sure. I’m sure.

These are better than my old ones. I did not know that was possible. That beanbag pouch!

If you knit (or even if you don’t) and have had any problems with your hands, these were $13.99 each and at the moment it says they’re almost sold out. Get a pair. You’ll be glad you did. Hopefully they’ll restock. Let’s talk them into it.

I’m still lining mine with old thin cotton socks with the heel and toe cut out, just like I did with my plastic ones for thirty years, because old habits and all that.

Edited to add, this one looks very close to it (even if the initial picture doesn’t) but I haven’t seen it in real life yet to tell for sure.

Edited 12/16: The ones I bought are being restocked now.



Grateful
Monday November 23rd 2020, 12:01 am
Filed under: Family,Knit,Knitting a Gift,Life,Lupus

President Nelson, head of the Mormon Church, asked that we talk about what we’re grateful for, and trying to squish it all into words seems kind of overwhelming.

In no particular order: waking up every morning in this life.

The faith that requires that I be my best self towards all others in order to honor what I’ve been blessed with.

The doctors and nurses and blood donors and medical researchers and volunteer research guinea pigs all the way to the housecleaning staff at the hospital–everybody who helped save my life.

My family, in a million more ways than I could ever convey. So much love.

The fact that my three nephews who got covid survived it; a cousin’s working on it.

And this is going to sound weird, but…my lupus, and the Crohn’s that piled on nine years later. Because of all the ways that it constricted and confined my life: after reading Norman Cousin’s book, “Anatomy of an Illness,” I knew I needed a creative outlet and the smocked baby outfits I’d been embroidering were right out–my hands couldn’t hold that fine of a needle without intense pain.

I was at the library with my little kids one day and Kaffe Fassett’s Glorious Knits about fell off the bookshelf into my hands. It was that two-page spread with the models in those fabulous coats in an amaryllis field in the Netherlands that got to me–you know I love amaryllises. I could never in the world make anything like those designs with dozens of colors but I checked that book out again and again till I finally gave up and bought a copy.

That was the turning point. Turns out, my hands could knit. Thank you, Kaffe.

I had basically given up knitting in college when I couldn’t afford the yarn nor the time. I made up for those missing dozen+ years, I would say.

I made his Carpet Coat (“These are large but they drape beautifully on everyone”) and when I got done my husband glommed onto it and told me, “It fits me better than you, go make yourself another one.” I did.

And then I met Kaffe Fassett. I’m pretty sure he ducked to come through the doorway, just like my husband does. Richard’s coat has 68 different yarns, I collected more skeins to make mine 86 because if he was going to nab my coat mine was going to outdo his. I went with the large split triangles pattern.

And then a teen some friends were raising in foster care loved them, asked about them–“Mohair. MO hair. What kind of animal is a MO?”–and I felt in my bones I had to make him one. A vest, so as to not worry about the fit or running out of my leftover yarn, but, a large part of me argued within that I can’t possibly knit for every single person who admires what I do! I’d never stop!

Tim’s happily married with children now and his wife still wears that vest all these years later. Fits her better now.

But that project was an inner barometer: when I felt generous it was what I wanted to work on, complicated or not, and when I was getting wrapped up in illness or just too down to cope with it I had no desire to. I began from that to learn just how much better I could make myself feel by applying happy anticipation to my stitches towards someone else’s happiness. It made the lupus less–devouring. I don’t know how else to put it.

All the things I’ve made, all the privileges of being able to share what I can do–none of that would have happened had my circumstances been what I’d planned on. I was going to get my last kid in school and then go back to work. But for so long I was just hanging onto life by my fingernails day to day with my illness.

But I could knit in happy anticipation of seeing the look on someone’s face, I could make love tangible, and I can’t tell you how many times that has helped make the difference.

I’m so very grateful for every member of my family, too, but that would be an encyclopedia rather than a blog post.



Bench pressing
Sunday September 06th 2020, 9:43 pm
Filed under: Friends,Life,Lupus

And yet another announcement of friends moving to where housing is more reasonably priced to work remotely from there.

And so there is now a quite lovely wooden bench under the elm tree for enjoying a good book from, for those who can do the sun time and as our grandkids get older. I quite like it.



Enterprising
Thursday August 06th 2020, 10:23 pm
Filed under: Life,Lupus

They hadn’t gotten back to me and they’re usually really good about that, so about noon I finally called.

The agency receptionist asked whom I’d been referred to yesterday?

She hesitated. Did I want to just call Hartford’s claims directly? She’d be happy to connect me.

Something about it made me wonder if the problem was my insurance agent maybe battling covid and her not wanting to say.

I found myself talking to a very helpful person at Hartford, who then stayed on the line while she connected me to the repair shop when their side kept breaking up to make sure I got the information right.

The same repair shop, same tow truck.

The same guy at Enterprise picked me up, and when I asked if the same Rav4 was available, said it was if I didn’t mind waiting a bit but it was just then being washed from the previous customer; did I want to come inside?

Where there was a seat and no sun. Absolutely, thanks.

I opened my purse–and suddenly remembered I’d taken my carry-around project out for a Zoom Knittalk meeting and had forgotten to put it back in.

He totally got why I was unzipping that purse and asked me what I was knitting now.

That took me by surprise and it made my day. He was just waiting for it, watching what he could of my face as he asked, hoping it would.

I laughed at the ziplock-free state of the thing and said, Well, I guess I’ll just have to read my phone like everybody else.

Which made him laugh.

Which was a wonderful thing.

We all matter so much more to each other in these days of isolation and I find that so often now, we’re less afraid to show it.

Just like that, the car was already ready before I could even type in the password and I was on my way in that same dark blue car again.



He knows who he is
Tuesday August 04th 2020, 10:52 pm
Filed under: Friends,Life,Lupus

Thank you all, no pain last night and a much more productive day. I couldn’t get all the bags into the two recycling bins and the trash can; some will have to wait till next week’s pickup.

But the business card for the guy who worked at the long-gone Netscape? Boy did it bring back memories. Phil Karlton, one of their original engineers and an old friend, who wore a scruffy beard, a red and black plaid lumberjack shirt and a brilliant pink tutu to the Halloween party and was so fun with our kids. His wife’s paintings. Her post-polio syndrome.

The newspaper headlines in the 90’s about the first online funeral notice. The standing-room-only service for Phil and his wife Jan, who’d been on vacation in Italy driving down a road that had no stop sign nor marking that a highway was about to cross it. The loaded gravel truck doing 60 that broadsided them.

All the people across Silicon Valley who showed up in support of their suddenly-orphaned young-adult son.

The town in Italy that put up a memorial and the stop sign the townsfolk had long wanted.

The boss who paid for the son to go see where his folks had died, providing everything so he wouldn’t have to worry about the details, the gratitude of everybody for the humanity shown him; he was the son of all of us in those moments.

The business card, these decades later, of the mutual friend of my husband and Phil. I understood why it was still here.

I remembered, I considered, I hoped the son has had a good life since all those people came together for him at that beautiful Unitarian church and silently wished him all the best.

And then I let the piece of paper go.



Just some dumb familiar old autoimmune nonsense
Monday August 03rd 2020, 9:59 pm
Filed under: Life,Lupus

Every now and then my lupus reminds me it’s still there and I still have to stay out of the sun. 2:17 a.m., woke up with pleuritis sharp enough that lying on my side felt like it was breaking my ribs. Same on the other side. Man, I reminisced silently into the dark, this used to be my normal life for months at a time and how did I even deal with that but it’s been years and hasn’t it been nice.

(So why is it doing it now. Yes I overdid it to exhaustion Saturday. So what. Stop it.)

Isn’t it nice that being on my back is okay? Except that there was no falling asleep that way, and any time I started to I rolled onto my side and Groundhog Day-ed the scene.

The sun came up.

The best thing about today was that it will have gotten me through to tomorrow, where I’ll get more done. And my lungs almost didn’t hurt at all.



A baby tree finds its way home
Tuesday June 23rd 2020, 10:18 pm
Filed under: Friends,Garden,Life,Lupus

In between the insurance company calling, the adjuster calling, Enterprise calling, Enterprise picking me up, Enterprise filling out the paperwork and sending me on my way in a minivan, and the company the insurance picked to fix the Prius calling about the tow truck they’ll send to get my car…

Ruth and Lise were going to Yamagami’s Nursery. Where one must wait in line in the sun to go in: only so many people are allowed in under continued lockdown procedures at this Essential Business, you must wait till someone comes out, etc etc. Which is why I have not been able to go. After buying a bag of potting soil somewhere else years ago that turned out to be, somehow, plain sand with just the smallest bit of dirt mixed in, I am quite loyal to the place where I know I get the best of everything and it is what it says.

Did I want anything?

I made sure they knew I am by no means on their way. Did they still want to?

Absolutely!

Ohmygoodnessyes! Thank you! I had vegetable plants so root bound they were starting to look sick. I’d ordered fifteen and twenty gallon fabric pots so that I could plant them where they’d have lots of root space without having snails disappear them overnight, all I’d needed all this time was some good soil. For two months. And I wanted to help keep my favorite place in business.

My friends–I met Ruth via knitting at Purlescence years ago–are fruit tree enthusiasts and the reason for my Black Jack fig: they’d told me that in our climate that was the best-tasting of their three.

I showed them around the back yard. They exclaimed in recognition as I named variety after variety, most fondly, the fig. We geeked out together over the thought of picked-first-thing-in-the-morning sweetness.

And I sent them home by way of thanks with one of my two Anya apricot seedlings. They were thrilled at the offer. I was thrilled; it absolutely felt meant to be. I had always known I would give one away and had been trying to figure out who it might best be, when suddenly as we were planning all this there was no doubt.

You cannot, as far as I’ve been able to find, buy that variety tree at retail. You can only plant a kernel and hope it’s true to its parent, and here I’d given them a year’s head start on the process.

They were very very pleased.

And now my own Anya is happily planted in the oversized pot that had been waiting for it. It should last it for several years. I was surprised at how big its root structure already was.

(The watermelon and squash plants were so grown into their clay pots that I finally had to shatter them carefully against the concrete to free their grip.)



Lockdown day 68: opening doors
Saturday May 23rd 2020, 8:33 pm
Filed under: Friends,Lupus

So there I was in the early evening when the sun and UV levels were low enough, watering the fruit trees, setting the timer, moving the hose again, going in and out.

The slider has a broken roller and sometimes it’s iffy but it was totally behaving itself, and I was silently remarking to myself how nice that was.

Until suddenly it jammed and that was it for the night. Aargh.

Beep beep beep. Three minutes and 27 gallons per tree, time to move it to the next. So I went out the front and around the house to the next peach and thought, eh, a little extra exercise, right?

And then I considered a moment: was it shorter to go back around again or through the gate to the front door on the other side? Maybe that. Why not. So I opened the gate–

–and who was parked in front now but the hopefully new neighbor-to-be. We waved hi enthusiastically at each other. She said something out the window, so I went around to our door, grabbed a face mask, and dashed back out to get to know her and meet her daughter and answer questions about the neighborhood.

The mom opened up: “I’m looking for a community.”

I told her about the annual block party with the street closed off and the rented bouncy house to keep the little kids amused and contained while the adults pull out the grills and barbecue.

And about how the neighborhood had rallied together when a developer wanted to put 42 houses on the I think it was .6 acre lot in the next block and the neighborhood had rallied around and had demanded the land go back to the school district. Enrollments were back up these days and once land is gone it’s gone, and that used to be the playing field for the elementary there (which has since reopened)–and in the end, the school district listened to us and they did!

I had to excuse myself after several minutes for fear of drowning my tree, ran, moved the hose, and came back out. This time the daughter was standing by their gate and wanted to know why it wouldn’t latch. She asked about the plants and the trees and I told her the story of the stabby juniper that the old neighbor and I just couldn’t get to stay cleared out–till the young man across the street hooked up the stump to the back of his jacked-up truck and revved it right out of there by the roots. VRROOOM!

They still have a contingency on the house. It’s still not a done deal. But they really want it. And I really want them to get it.

I would never have known they were there if that silly door hadn’t jammed. Thank heavens for irritating favors.



Lockdown day 45: purple irises
Thursday April 30th 2020, 10:11 pm
Filed under: Friends,Garden,Life,Lupus

 

 They were in this area, but this is not how they were. He must have quietly dug them up and replanted them. I thought he’d just cleared off the dead cover plants.

They were here when we bought the house, and over time they crowded themselves badly and then did a mass die-off in the drought–and have been steadily, slowly working their way back ever since.  They ended up kind of split down the middle into two bunches of randomness.

I thought it was so weird when we moved to California that everybody had a hired gardener. Doesn’t anybody work in their own yard around here?

Then I got lupus with extreme sun sensitivity, my husband threw his back out, and we ended up asking the neighbor’s how much he charged. (Fred’s cardiologist had made him retire.) It’s been good to have the help, and Elio’s a great guy.

I paid him extra last winter for something I didn’t feel was in his usual job description. He disagreed and tried to stop me. Dude: Take. The. Money. You spent the time, you did the work, you earned it.

Which is probably why the purple irises are now arranged in a perfect circle of green leaves and purple blossoms, with enough distancing to be social and healthy for a goodly while to come, placed just so between the apples and the fig tree. They are in their fullest glory and they have never looked better than they do right now.

Elio quietly offered up a gift in the barren winter dirt and waited for the day when I’d get to notice.



Lockdown day 15: work from home edition
Monday March 30th 2020, 10:52 pm
Filed under: Family,Friends,Lupus,Wildlife

This actually happened last week but I had to decide to tell it on myself.

The suet cake holder is hanging from the underside of the middle of the porch awning; no squirrel has so much as attempted to reach it, ever (if you don’t count the one that bounced a little going across up there, peered over the edge and gave up.)

There is a tall metal toolbox directly below it which no rodent can climb. A mover put it there last year after his dad’s estate settled and trying to wrestle it into a better place is something we would have to hire someone younger to do, so there it has stayed; it was that or the living room at the time and no thank you but at least it wouldn’t get rained on there.

So this is how it has been for six months now, with me feeding only the birds and nothing else so much as sniffing in its direction. Still, I tended to buy the chili-oil-infused cakes just to be on the safe side. I draped a thick but old 3×6 wool rug over it that is no longer quite nice enough to be at our doorway, giving the birds a better surface to hop around on and nibble fallout from while protecting the box. Every now and then I shake it out over whatever in the yard maybe needs some fertilizer. What else you guano do, right?

When the initial quarantine order came down I only had a few cakes left and the bird center was shut down–I was stuck with ordering from Amazon, but at least I was going to buy the same brand, not some knock-off that had who knew what. (Later, the bird center would be deemed Essential Functions and allowed to deliver to your car in front of the shop. Which I have yet to do.)

The ones mixed with peanuts seemed like a good thing for nesting time of year and to attract more types of birds, right? So I ordered a case of those.

I put the first one out there: one big fragrant four and a half inch square of come-and-get-it. Somehow my husband made himself a peanut butter sandwich shortly after.

I heard something and looked over to see a huge gray squirrel that had made the massive leap successfully and was gauging how to get from there up the rest of the way to that suet. I hadn’t so much as seen one cross my yard in awhile and I was just astonished to see one right there!

I burst through that sliding door after it got caught and noisily didn’t want to open as immediately as I wanted it to, while I yelled, YAAAH!!!! GITOUTATHERE!!!

It took a flying leap and away. I set up something I hoped would be a barrier along the far edges and came back in, not wanting to spend too much time in the sunlight–lupus and all that.

To the sound of my husband in the middle of a work conference call right then, and having just apologized and explained to his co-workers, the familiar voice of one of them, chuckling. At both me and my husband’s embarrassment and totally understanding. A couple of others were chiming in, laughing.

Oh… Hi, Gary…

The next time I put a suet cake in I broke it and put the two halves side-by-side in the holder so that from the phone lines through the trees over yonder it doesn’t look like there’s much left in there worth bothering with, much less falling over backwards with a cinnamon broom landing on your head like the second time it had tried. Into the stored frost covers. It was cushioned.

No more squirrels.



Must be going around
Wednesday November 13th 2019, 10:31 pm
Filed under: Life,Lupus

I emailed the leader of the lupus group and said I wasn’t really sick but I was fighting the edge of a cold so I wasn’t going to be there this afternoon.

Turns out I wasn’t the only one. About an hour later she replied-all that she’d never done this before, but she was canceling the meeting, and hopefully next month we’d all be better.

All the more afghan knitting time for now.