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.
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.Â 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?
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.Â 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.Â 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.
Three bucks a shot
“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?
Rheum in the in
I had ignored the reminder message for quite some time:Â 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 youÂ 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.
So I went in today. And asked the doctor how he was doing.
He told me he was now coaching his daughter’s basketball team.
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.Â I’ll see him again in six months.
Sam’s Lupus walkathon is Saturday
Wednesday October 17th 2012, 9:42 pm
Filed under: Family
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.Â 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.
Their online photo did it for me. And so on my way home from Los Gatos Birdwatcher today, I stopped by Yamagami’s: there was a high greenhouse roof covering most of the place and so it seemed I could risk it. I noted that you have to walk through their building to get to the rest, straight from the car right at the front door. Promising.
Walking through the building, then the towering greenhouse, I did actually have to step outside a few steps to see the Loring and Indian Free (Thomas Jefferson grew those) peach trees on display–there, side by side, exactly what I’d hoped to find.
Only, the price tags were over three times what I’d expected andÂ I was quietly agog. Not only that, the Loring looked definitely unwell.
Got home and went straight to the computer and looked it up–oh of course, it’s the special-order bareroot trees that are the price I saw on their order form, not the ones they’d tended in pots in a high-rent part of the state. Still. You needed that sale to get the ones in stock under $100 each if you had to have them right this very minute.
But here was a nursery I could feel good about ordering through because I could actually go there to pick them up. Carefully. For someone with such extreme sun sensitivity as I have with my lupus, I cannot begin to tell you how exhilarating and how freeing that felt.
What Pamela and Sandi did
I missed it the last two weeks with that flare going on. I got my blood test results back yesterday–1.9 on the neutrophils is what it was like when I was on chemo for six and a half years, what’s up with that? Going and being in a crowd was just not the wisest thing to do; things are settling down and the bleeding seems to have stopped and the cardiac cough that was bugging me is almost gone too, so, why would I want to risk revving up my autoimmunity by being exposed to anything?
Because it was knit night. And I missed my friends. And Pamela’s moving away soon.
Coming onto the main drag on my way out, there it was. A Cooper’s hawk, quite possibly my male Cooper’s hawk. On the phone wires running just this side of the train tracks, looking down on the road I was on.
And at that moment I felt like everything would somehow be okay.
It was a very good evening to be at Purlescence. (Hey, and if you want a really good lace shawls book *cough* they’ve got it.) I was so caught up in the drama of go/not go that I’d utterly forgotten that Pamela and Sandi had been working on repairing my spinning wheels. Pamela had wanted to learn how for the sake of when she will be far from the expertise of the shop.
One turned out to be ready for me to take home.
Years ago I found a friend-of-a-four-times-removed friend who had bought an Ashford Traveler spinning wheel. Cute little thing. As far as I could piece together, she put the drive band on too tight and couldn’t get the darn thing to spin worth beans. (She also had her roving separated not in lengthwise strips but short fat wads.) Maybe someone told her she couldn’t get a high enough ratio on so small a wheel to make those linen curtains she was dreaming of spinning and weaving?
So. She bought a second wheel, an Ashford Traditional. Uses the same bobbins. Got a distaff for the flax.
They sat in her garage for years till the day we found each other. She sold me everything: her wheels, a goodly stack of books, all her fiber, getitouttahere, $150.
Eighteen years later, my Trad has had a hard life. One kid tried to balance her Welch’s grape juice on it andÂ stained it a permanent purple puddle; another kid tripped over it and his teenage foot smashed the flyer. That was after the wheel had fallen out of the car and smashed the original flyer and maiden. I bought new parts, again, but after the second blow it was wobbly and a pain to to use–the uprights had a tendency to wiggle apart as I spun and the flyer would simply fall out.
The Trav fared a little better but it was always stiff and arthritic, whatever the drive band. If you pumped the treadle just as hard as you could and then let go, it would turn maybe seven cycles before stopping. I read an article in Spinoff years ago that said it should be closer to 100. As if!
And now the Trav is glorious. It’s scrubbed, repaired, lovely, it works and looks fabulous. They’re not quite done with the Trad, but give them a few days. (Don’t worry about that purple, guys, it’s part of its charm now.)
I can spin again. Do you hear me, life? I can spin my own yarn on my own working wheel again! Thank you Pamela and Sandi!
Wouldn’t have missed that for anything
Michelle thought of it first.
Me: When was the last time you saw your cousin Jonathan?
Ryan: I don’t think ever!
And so a trek was made over the reservoir and through the redwoods and we spent the evening at Richard’s aunt’s and uncle’s up in the mountains. Jonathan and his wife and young sons came north to his folks’ to meet us in the middle. Potluck salmon and salads, chicken on the barbecue, fruit and homemade bread on the beautiful deck overlooking the woods that Jonathan had built for his folks for his sister’s wedding (she has two kids now too). Ice cream, blackberry pie, dairy-free homemade cookies. Good people, good food.
And it was late enough and non-reflective enough and shaded enough by those towering trees standing sentinel that I was actually able to be out there. I cannot begin to describe how liberating that felt.
On our way home in the deepening dusk, a large hawk swooped near the road as we passed. Just to to add that perfect extra touch.
(p.s. at midnight: Go Curiosity Rover! Go NASA! Well done!)
Go team go!
Wow you guys. From zero last night to $730 as I type for Sam’s walk for lupus research. I woke up this morning, clicked on the link, and nearly burst into tears. Thank you cannot begin to describe it. Wow. Such a rush of emotions. This is our last month having to pay Michelle’s big COBRA health insurance bill, I feel terrible that I cannot quite yet make the effort I want towards Sam’s walk, and yet you all… Wow. Thank you.
On a side note for all the gardeners out there, I learned something today: the San Jose Mercury News is running classic Gary Bogue columns online, unwilling to let their wildlife specialist go in his as-of-last-week retirement. A woman had written in once to say that she had finally cured her squirrels of attacking her tomatoes.
By hanging red glass Christmas ornaments on them. Ooh, shiny! And the darkest reds are the sweetest, right?
One bite and they never touched them again.
Walking for life
Thursday August 02nd 2012, 11:22 pm
Filed under: Family
Stephanie Pearl-McPhee and her fellow knitters hit the $50,000 mark and then blew right past it this afternoon in her multi-day bikeathon for AIDS patients. I can’t tell you how good that feels.
I can only wish. Today we found out that our daughter Sam is participating in a lupus walkathon fundraiser, with all funds raised going directly to research in the disease she and I have and with no administrative cut-outs.
There has been so little achieved for so long, in part because the FDA’s guidelines pretty much ruled out okaying a drug for a condition where a remission could occur of its own–so nobody tried. Some frustrated researchers with an interest in making a difference finally asked, If we can knock out one marker at a time, would that pass?
And so Benlysta got approved last year, the first new drug for us since corticosteroids (which don’t work for either of us) and Plaquenil (gives me massive hives) in 1955. Benlysta helps one out of eleven patients–a lot, so far, when it does. Sam, having run through everything else out there, is one of those lucky ones.
My daughter was very ill this past year till they gave it a chance. It may well be that she’s alive because of it.
Patients and their loved ones are the ones who have funded the research. Congress, not so much. There are more drugs in the pipeline working their way towards approval, patients helping patients find hope and researchers a cause to dedicate themselves to.
I know I just paid for plane tickets to last week’s wedding. But some things are just so good and so right, somehow we will do this.
Tuesday July 31st 2012, 10:28 pm
Filed under: Lupus
I bet not a lot of doctors say these things.
Scene: ten years ago. Cardiologist’s office after a tilt table test at Stanford, deliberately stressing my autonomic nervous system to see if it would react. It most certainly did; they stopped the test fast with the alarm sounding and a second doctor coming running as my blood pressure hit 63/21 on its way down. That cliche about the hearing goes last? It’s true.
Cardiologist: “I don’t often tell my patients this, but… You need to eat more salt.” (Acknowledging at the same time that the basic problem was the lupus’s effects on the brainstem. I am really really glad to have that particular problem mostly in remission now.)
Today. After discussing the cardiac complications from trying to be in the first few family photos outside in the sun last week–the heart is settling down okay now, no worries, just checking–I mentioned that my weight had been slipping and all my best efforts had only gotten it to hold steady at 110 the past month after going down relentlessly since February.
We discussed a bit. He looked at me. He hesitated. And then he said, “I don’t usually tell my patients this, but…
You need to eat more fat.”
I had a container of homemade chocolate truffles in the freezer already. I told him, that and a vitamin pill equals a can of Ensure, right?
He laughed and did not tell me no.
Maybe I’ll add a little smoked salt to the cocoa coating next time. Just to cover all my ganache bases.
Richard bought me a large pot of my favorite lilies last year that quickly became an explosion of blooms.
Come fall, their leaves fell off for the winter and they looked dead like any self-respecting deciduous plant should. New shoots came up in the spring. Why a part of me was surprised I don’t know.
And then I caught the squirrels chewing off the tops. NO!
And so the not-yet-transplanted pot came inside, behind the windows that cut out 97% of the UV those lilies so much need but I with my lupus so much do not. It amazes me that despite being blocked to that degree they’re still just quietly doing their thing just the same. The leaves and buds and flowers are a bit smaller. I’m counting sixteen instead of last year’s nineteen on the bud count. Hey. But oh, the sweet, sweet scent with just the first two open.
And a certain someone gets credit for giving me flowers all over again.
Thank you, Nina!
It had been too long since we’d gotten together. And the Malabrigo Superfine Merino was a one-time run from the mill, delivered only to Imagiknit, and when it’s gone it’s going to be gone.
It is really hard for me to go to that store alone: parking is non-existent and the walk in the sun can be very long if there isn’t someone willing to drop me at the curb if need be and then take a hike. The fact that it’s down the block from a popular park in the City doesn’t help.
And so my old friend Nina, bless her, who loves to knit, too, threw an unexpected afternoon free at me and weÂ drove to San Francisco today. We actually got a spot within the block.
At Stitches West back in February, Antonio, one of the Malabrigo owners visiting the show from Uruguay, told me about that mill run and that the micron count was 14.5 (wow!) He fervently wished there were more of it, but there just wasn’t, and so…
…I went straight to the Imagiknit booth and talked to Allison about it. Went home and ordered that Solis colorway.Â Gave up petting the thing and actually knit it up this past week: because I needed to work with it and I needed to know what it was like running between the fingers for hours before letting myself be tempted to buy more.
And the answer is? It is glorious.
So. The woman running the shop today was surprised when I told her the shawl I was wearing was one skein of that SFM; the stitches looked too thick to her to be that.
Bingo! She noticed! It’s 100g and 336 yards, but off the ball and onto the needles it somehow relaxes and widens out as if it were a worsted. It is airy and light and soft as fur and perfect. It’s still wool, which still has scales, but still!
There was one skein on their high wooden table of the stuff in a color that wasn’t on their website. It was the most perfect thing I could have asked for, so, that and two skeins of Malabrigo Sock came home with me.
A few minutes after I got home, it suddenly dawned on me that the Abril Sock I’d bought… Wait, let me get it knitted and done before I tell the story, but, it matched with something that has waited three years for me to finally get with it. Now I know.Â Perfect. To be continued.