life with a chronic disease and a really big yarn stash
Author: Midnight Knitter
I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.
This has been quite the year so far. I have never seen so much spring rain; it has been cool with daily rain for weeks (along with a few scary thunderstorms that triggered hail and tornado sirens…). After years of drought, this has been a little disconcerting this year.
Do you see the little yellow star on the rainfall map? Yeah, that’s me. There has been so much water I have had to rescue potted plants that were overflowing (with the poor plants drowning inside the flooded pot) and the plants and trees are more lush than I’ve ever seen before. I had a little pond in the back yard, and I never took the winterization covers off the outdoor faucets until today. Finally, finally this week the weather turned, and it became warm outdoors over the weekend. I finally turned off the furnace for the summer last night.
Hannah: where are the moths?
Poor Hannah, the miller moths are now gone, but the butterflies are right around the corner. Maybe there will be dragonflies! Summer is finally here. I headed out to the yard to get some pictures.
My first rose has opened up!!The columbine is blooming! There are even more mushrooms appearing under my Douglas fir.Things are looking pretty good at my front door. Okay, the deer are starting to look a little worn (bark has been falling off…), but that pinyon pine is covered in new growth!
The older bunnies of the spring are now laughing at me from the (unusually lush) lawn, and there is a new fluffle of babies emerging from under the deck.
There are birds everywhere in the yard, but I had no luck snapping a shot. I did, however, capture a bee at the catmint.
I have to admit, I’ve been way too emotionally involved in this little sweater, the Soldotna Crop by Caitlin Hunter. I shopped and shopped the stash for some yarn. I dithered about whether to knit this little charmer in the DK weight that the pattern was written for, or to go rogue and to try it out in fingering weight. Needle size became an issue. I decided to go up a pattern size, because… fingering… even though my gauge was close. Then there were the colors… I was pretty torn about how to handle the four colors as they are displayed in the final sweater. I wanted a speckled or variegated yarn to break up the pattern a little, but that creates its own issues… Finally, finally I arrived at a final decision and got through more than half of the colorwork chart. Here’s the post about all the false starts, tinking and whatnot that went on…
This is the final color order (left to right) that I settled on for my Soldotna Crop.
I’m happy to report that things are now working out! I knitted steadily last week and got past the split between the arms and the body of the sweater last Friday. By late afternoon yesterday I was a couple of inches below the split and becoming a little concerned about how this baby would fit. I took the work off the needles, did some fast steam blocking, and then tried it on for fit.
Houston, we have a sweater!!!
This is a huge, huge relief! I took it outside for some fast pics and this afternoon I’m putting it back onto the needles and will continue on. Yay!
Full view: I’m really liking how the colors are showing in the body; that’s why I wanted to use a variegated yarn so that there would be subtle differences.Here’s a close-up of the fabric.
I’m really happy with how things are going now. This sweater sure had a rough start, but I’m rocking along now.
Like just about every other kid in American, I have spent some time on the basketball court. I’m a wicked guard, not a great shot, and let’s not talk about my free throw statistics. There’s a lot of running around involved; I’m not a fan of running. Basketball never took for me, and as I got older, I was more drawn to softball, gymnastics, and volleyball. Basketball… meh. I don’t follow it, never watch it, and yeah… not really a fan.
But this year basketball has been all around me.
Last winter, fighting a flare, pumping myself up for a trip to the cath lab to check the pressures in the right side of my heart, I started reading The Light We Carry by Michelle Obama. Michelle really made an impact on me; she knits, she understands chronic illness, and she struggled with her height as a kid growing up in Chicago. The tallest girl by far in her class, she was always singled out, at the back in pictures, the anchor when kids lined up, you know… different. There was so much in her book to identify with; I suspect we all have something that made us apart and different as a child, and we all know how hard the middle school years are. She found her way, as we all know, and shines with self-confidence and purpose these days. The book was great, I learned a lot, and I recommend it.
Michelle is 5’11” tall, much taller than me!
Michelle wrote about her older brother Craig in the book, who also attended Princeton University, and out of curiosity I googled him. Oh. Craig Robinson has his own Wikipedia page. He’s a force in the world of basketball and is currently the Executive Director of the National Association of Basketball Coaches. Suddenly the height in the family made sense, and I remembered that President Obama also played basketball. Kind of interesting, huh. Basketball.
I loved Dear Edward, so I bought this book as soon as it came out.
Then I started my next audiobook, Hello Beautiful, while knitting along on the Hannah blanket. This is a book that will stick with you a long time, and I’ve really been unpacking the layers as I think about it even now. Imagine a dysfunctional family that loses a child just as a new baby comes home. Somehow the grief and loss from the death of their little girl is projected onto the little boy (William) growing up, and he is alone, unwanted, at a loss, searching for a family, and quite tall for his age. He finds a family and sense of purpose in basketball. He marries into a family with 4 girls, and just when you think all will be well, the bottom falls out. He is unable to play basketball any longer because of an injury, but he is lost without it. He tried to be the man his wife wants and goes to graduate school where he begins a thesis on the History of Basketball, but he also struggles to understand who he is and what should his life be. There are births, deaths, loss, grief, abandonment, and yearning for family throughout the book… and basketball. William ends up working for the Chicago Bulls basketball organization. Another great book, I learned a lot, and I recommend it.
By the start of this week I was knitting again without my wrist braces (yay!) and I watched a couple of movies online while I stitched along. I’d heard about this new movie called Air that is the story of the development of Nike’s Air Jordan shoes, so I watched that Sunday night while stitching on the Soldotna Crop sweater.
Look at all the progress that I’ve made! I’m coming up on the point where I separate the arms from the body of the sweater.
I thought that this would be a movie about a scrappy little company creating a new shoe. Oh, it is that, but it is soooo much more. It is a story about purpose, finding your way, and basketball. It is about maintaining balance, recognizing your worth, demanding the best, and knowing that a shoe is just a shoe until a person who will be a force for change and a model of excellence, Michael Jordan, puts their foot into it. It is about risking it all in order to make a change. What a good movie! I seriously wanted to have a pair of Air Jordans for myself by the end of the movie, and it was even better because the basketball team involved is the Chicago Bulls in Chicago. William from Hello Beautiful‘s team!
There’s kind of a pattern here, huh? A president and first lady from Chicago. William finding himself again in Chicago at the Chicago Bulls. Nike putting all their marbles into one basket with a new shoe on the foot of a player that they think will be the future of basketball, a player for the Chicago Bulls. Synchronicity. Obviously, I need to watch some basketball…
While I was totally not paying attention, the Denver Nuggets, the NBA team in my area, advanced in the championship series. As it turns out, the game that could win them the championship was last Monday.
So, knitting like crazy, I watched my first basketball game in a couple of decades last Monday. The Denver Nuggets won! The first championship for the franchise ever. Fireworks were going off behind my house as I finished the last round of knitting before separating the arms from the body of the sweater; you know this sweater… it had been ripped and tinked for weeks as I struggled with it. Today I’m knitting away on the body, my wrists are pain free, and I seem to have popped out of the flare.
The weather has been just crazy here. In the mornings the air is cool, the sky is bright blue, bees rule in the garden, and birdsong echoes through the backyard. The cats and I head outside to the catio where I enjoy my current book and morning latte while the cats chase the occasional miller moth and stalk bunnies from their side of the wire. When my latte is finished, I get a little gardening done while the flowerbeds are in the shade and the cats doze on the deck.
See how cool it is out in the yard? That huge mushroom just appeared under one of my trees. Several plantings are now starting to bloom, and the roses are covered with buds. Mornings outdoors are really cool!! By noon clouds are gathering, gloom begins to gather in the house, and ominous rumbles start to sound to the west. The afternoon thunderstorms are piling up and moving east; sometime soon there will be rain, lightening, thunder, hail and hopefully no tornado alert…
This week’s hailstorm… seriously, the weather has been something this year. I don’t know when I’ve seen so much rain before.
Trapped indoors, I spend the gloomy afternoons tinking back on my current knitting project, the Soldotna Crop.
What is going on? Well, there have been an endless run of knitting misadventures with the sweater. First of all, I started knitting this sweater while wearing braces on both wrists. Yeah. The tension was a little funky. I frogged the sweater after a couple of days and started over. I transitioned to compression wrist braces and managed to get a couple of inches into the sweater. Um… the short row turns left holes in the fabric of the sweater, so I frogged back and reknitted that evening using German short rows. Great. I finally got to the colors and started knitting the chart.
I started knitting using this order of yarns, starting with the dusty orchid and moving right.
Yeah. I didn’t like the way the third color, the turquoise multi, looked. I wanted the gold next to the dark plum. I tinked back and dug around in the yarn stash.
I decided to knit the color chart in these colors, the alternative selection.
I really liked the gold yarn in the #3 slot, but the light silver was too light, literally. The weight of the yarn made it seem flimsy in the knitting, so… I tinked it back out. Back to the stash.
That darker grey is a heavier yarn that played well with the others. Yay! I made a lot of progress, but after taking the knitting outside I decided that the new grey was a bad decision. I knitted a swatch with the original turquoise multi and laid it on the sweater.Doesn’t this look a lot happier?
There was more tinking. I don’t want to talk about it. Two days ago, I knit back with the newest color order and this what I got.
I like it!
I think that I’m done tinking for now; the plan is to just keep knitting and let the color chips fall where they may. My hands are feeling so much better that I can knit pain-free again, but I am still wearing the compression wrist braces for now. I’m almost halfway through the color chart and my gauge is spot on. I’m feeling pretty good about the knitting and there is only one last concern hanging over me… I sure hope that this thing fits!!
Have you wondered how the Scrunch socks that I started while struggling with tendonitis are doing?
I’m hoping to get the socks done over the weekend. 🙂
So, that was the week. Beautiful mornings, lots of rain, and adventures in knitting every afternoon and evening.
You know, some of the best lessons in life are ones that you didn’t see coming. Years ago, I was a member of a 6th grade instructional team that taught integrated units. The kids were learning about Canada in social studies at that time, and the language arts teacher had them reading Julie of the Wolves. I read the book too even though I was the social studies/science teacher, and one of the lessons really stuck with me. It was advice from Julie’s father to her: if what you are doing doesn’t work, change what you are doing. I am not one to quit easily, but sometimes that isn’t the right attitude.
I’ve been struggling with my treatment plan for months and I finally decided that we needed to do something different. My pulmonologist stopped the medication (Ofev) that I was taking to treat my lung disease (interstitial lung disease) because of side effects and started me on two inhaled medications instead. In the aftermath of this change, every single one of my tendons has decided that it hates my guts. Everything, everything hurts, and my arms are back in braces. I have two canes going so I am never far from one when I walk, and the walker is back out for use in the house. Feeling sorry for myself, I was slow to realize that Hannah had a rash on her tummy, and she was just miserable, licking and cleaning herself so much all the hair was gone and she had open sores.
After eliminating everything that I could think of, I have concluded that Hannah is allergic to the blanket that I’m knitting!
That yarn that makes up the Nectar blanket is made of recycled fibers, and it includes raw silk. If you don’t know raw silk, it has a slight smell because the proteins from the silkworm cocoon are present. I kind of think that the silk is the problem, so I have packed the blanket away for now because Hannah LOVES TO LAY ON IT!!! Hannah got a bath with soothing anti-itch shampoo and the rash is gone and her fur is growing back. Bad yarn, bad!!
It hurt my hands too much to knit on it anyway. The lace is hard to work, and the purl rows are misery. Goodbye, blankie. You are going into time out for now.
I also packed away the yarns for the La Prairie sweater that I wanted (really badly) to knit because it is a cardigan and is knit back and forth (instead of in the round); all those purl rows on the wrong side will kill me. The yarn is now keeping company with the Nectar blanket in time out.
Obviously, I needed to find something that I can knit. What I’ve been knitting (and want to knit) isn’t working, but by golly, there must be something that I can knit on. Something that is only in the round, almost all knit stitches, and easy to pick up and put down again without losing my place.
These socks were a free pattern on Ravelry, and they are just what I needed. There is no ribbing at the top: just stockinette that curls around to form a rolled edge. The purl row is every 9 rounds, so I can manage that. The heel is made with all knit stitches! I’m able to knit with size 1 cable needles because I push them with the back of my hands without using my wrists.
and these socks are… scrunchy!
The socks are slightly oversized so they are easy for me to pull on. I’m slowly making progress and my wrists have improved so much that I’ve transitioned from the hard braces to compression braces on my wrists while I work. I knit outside most mornings with the cats enjoying the birdsong and fresh air, dreaming about the colors to knit a Soldotna Crop sweater in fingering weight yarn.
The cats hang out under my swinging seat while I knit. I think that they are dreaming about catching bunnies…
Soldotna is written to be knit in DK weight yarn, but I think that is too heavy for me to use as a light topper over long-sleeved shirts. I have been messing around looking at other sweaters by this designer that I’ve made that were written for fingering weight, and I think that if I go up a size in the pattern, I can substitute fingering for the DK. Also, fingering is easier to work with while my hands are totally acting like assholes, and stranded knitting is slower knitting and hopefully easier on my hands than my usual speedy pace. Did I mention that there are no purls in this pattern once I’m through the first rows of ribbing?
As usual I am fussing about the colors and the order in which they will be knit. I had completely decided on the first combination (with Mateo in the background) when I decided to play around with a combination that is more colorful by adding in the turquoise multi. Everything depends on the order of the colors in the design; I’m pretty happy with the combination on the right, and I’ve decided that if I don’t like it, I’ll just shop the stash and start over with some other colors. You know, if what you’re doing doesn’t work… The other factor that is causing me to lean towards the more colorful set is that the yarn is a little heavy for fingering, so I have a better chance that it will work in the pattern.
Have I wound the yarn for the sweater yet? Nope. It still seems too exhausting right now, but it is hopefully set out by the umbrella swift in my dining room. Soon, Soldotna, someday soon my wrists and hands will decide to behave themselves and it will be your turn.
Take that scleroderma. You’ve been messing with the wrong knitter!
Notes:
Julie of the Wolves is one of the books that gets banned from time to time, but it certainly made an impact with me and my students loved it.
My pulmonologist says that there are two other drugs in the pipeline that I may be able to take when they are approved. Yay, science!
Hannah was the best girl ever with her bath. She didn’t struggle or even meow while I was washing her tummy and then she let me blow dry her with absolutely no fuss. How about that!
The color of the yarn that I am knitting the socks with is… Perfect Miracle. How cool is that? Just the color that I need right now.
Last night a miller moth got into the house. The cats staked it out and Hannah kept trilling for me to come help her get it. The poor moth, trapped in my house in an environment that was definitely not safe, clung to the wall up near the ceiling.
These moths are small: about an inch across and they will leave a dusty powder behind if you touch them. This powder, reminiscent of the powder on people working in flour mills, is the source of the moth’s common name.
Later in the evening, after I had turned out lights in the house and was reading in bed, the moth, attracted by my reading light, arrived upstairs to bat and fly around my light. Chaos erupted as cats launched themselves towards the moth, and I grabbed the lamp. Mateo dove down the wall behind the bedside table, chasing the moth while Hannah tried to cut it off from the other side. Sigh. It was another long night…
This year there are an awful lot of moths on the move. Look at what showed up on my Facebook feed!
That’s right. As the cats and I know well, these moths are creatures of the night. I see them snacking on flowers that attract moths (lilacs, I’m talking to you!!) and bopping around lights during the night hours. Why these moths, creatures that hide from light all day, are attracted to sources of light at night, is a mystery to me, but there you are. There are several theories about why this happens, which you can read about here if you’d like.
Miller moths are annual visitors to my part of Colorado as they migrate westward towards the cooler foothills of the Rocky Mountains for the summer. In their caterpillar stage of life these moths existed as army cutworms, wreaking havoc on crops and grasses in fields on the Great Plains to the east. Once they emerge from their cocoons, the adults take to wing and head west in a great migration that lasts for weeks every May-June. Why are they doing this? There is a lot of speculation, but mostly it is thought that they are looking for better food and cooler conditions to survive the hot summer.
I try to keep a good attitude about the moths at this time of year. These moths are nocturnal and hunt for hiding places during the day where they are safe; too often they crawl into the cracks at the edges of the doors and windows and if you open one, the moth will take flight, end up in the house, and begin frantically searching for another hiding spot. Opening the garage door sets off a flurry of moths. I’m not going to lie; it can be really spooky when an unawares homeowner opens the front door to an erupting cloud of moths suddenly taking flight and batting against their face and hair. In my case it is worse because I have a storm door outside of my front door, and when I open the door, the moths have no place to fly except into my house. <Cue the cat excitement!!> How do those moths squeeze past the storm door to get inside the gap? They are experts at squeezing through tiny openings! Seriously, it has been so bad this year that this also showed up in my Facebook feed:
You are supposed to gently trap them and return them to the outside world where they belong. Here is the link to the article.
Can you hear Mateo wailing why??? He thinks that these moths are the best cat toys ever, and this is what Hannah looked like the first time she saw a moth on the wall:
Hannah: what is that??!
Well, the reason why they should go back outside is because they are important to the ecosystem. They are significant pollinators of flowers like the lilacs I mentioned above and other plants with strongly scented (and lightly colored) flowers. They are also important sources of food for birds like swallows; right now, there are furballs of swallows dipping and darting through some intersections and dodging cars as they snatch moths from the air. It is so bad it can be concerning when you approach the intersection; a swallow hit a car next to me while I was waiting at a light yesterday. Clearly, there are miller moths at these intersections and the birds are dive-bombing the cars as they hunt the moths. The reasons aren’t clear why the feeding is so good at some intersections, but as with all things miller moth, there you are. It must have to do with the lights, the lines between the poles, the swirling air, nearby fields, whatever. Just another magical phenomenon associated with the migration.
There is one last thing that I think of when the miller moths arrive. It is time for the kids to graduate! Year after year, graduation after graduation, I shook the hiding miller moths from my robes, carefully arranged my masters hood around my shoulders, and marched with my students as they left me and moved on with their lives.
Okay, I don’t get out much. When I have to go to a medical appointment across town it is kind of a big deal. I have to adjust my drugs and diet for a couple of days. My oxygen bottles need to be ready to go. I need to minimize my time out of the house (brain fog becomes a big problem after about 3 hours) so I use my smart phone for everything that I can: check in, payment, and navigation to the medical center. My car, named Stumpy, handles my email along the way, tells me the route, and also gives me weather reports. I love technology!!
Getting ready for an outing.
The last time I went to my rheumatologist’s office I didn’t get into the elevator in time before it closed its door and left. Hey, there are a lot of elevators there and they don’t all go to the floor that I needed. Behind me, I heard the voice of a man who complained loudly about how impossible modern technology is, and he advised me to push the button again and to hope for the best. I pushed the button, and this time when my elevator car arrived, I had sorted things out and managed to get in the right one on time. He joined me and continued to rant about technology, and then suddenly began to vent about “needing our country back” and assured me that it would take a long time, but that we were going to “get the country back.”
Stunned, I looked at him from across the elevator car. He was an older white man in work clothes, someone who looked like he lived in a rural area. I may have backed up a little more. All I could manage to get out was that I had a different opinion from him, and immediately his manner changed, and he became polite. Yeah, right. I saw that rage you’ve got going on under your farm hat…I got out at my stop, got my little ol’ liberal butt out of there, and didn’t look back. How did that segue from frustration with technology to MAGA extremism in a heartbeat?
The incident really hit me because I was reading (well, listening to) Demon Copperhead at the time.
Demon Copperhead (by Barbara Kingsolver) seems to be a modern rendition of David Copperfield set in rural southern Appalachia (Lee County, Virginia) that has packed into it all the horrors of vulnerable populations in one neat package. It was the kind of book that is just horrifying while completely engaging you in the story. Demon is the child of a mother who dies young and is forced to enter the foster system. In placement after placement, he is mistreated and sometimes starved as he is used for labor or a source of income by his foster parents. As I read the book, I became aware of how bad things can be in an at-risk population where the job opportunities are few and far between, resources are limited, and education substandard. These communities, insular and tightly knit, cling to each other to help out and somehow survive as they are preyed upon and abused by corporations and pharmaceutical companies.
In spite of all of this, and even though Demon is betrayed again and again by the people in whose care he is placed, he survives, comes to terms with his history and the people in his life, and shines on as the author of a comic series about his people, the Appalachians. All the events and understandings of his life, the good and bad, come to life in his comic series called RedNeck, that shines a light on the people of his community.
This book is just amazing, and it really made me learn new things and start thinking about the world around me in new ways as I knitted along listening. Towards the end of the book, Demon mulls about the differences between people who live on the land, relying on each other, and the people in cities who scramble for money since money is needed for everything. From the perspective of advanced technology and more money, city people look down on land people as unsophisticated and ignorant, when in truth people should be more important than things. Conversely, it is also easy to feel intimidated and overwhelmed in unfamiliar situations; a modern high tech city (or medical center) certainly can be that to people who don’t have weekly trash pickup, sidewalks, or, yes, elevators. Suddenly I was back in the elevator in the Kaiser building, looking at a frumpy man who was furious about technology and the loss of his country.
This is me a few years ago, deep in a flare, clinging to my beloved cat, and living my best little scleroderma life. It was at about this time that my pulmonologist referred me to palliative care.
I’ve always been a fairly reflective person, but lately I’ve had more time than usual to think about things. I know people who are consumed by money and who hunger for expensive possessions. Some of these people want expensive things as status symbols, and there really isn’t enough money to make them happy. I recently ghosted someone who thought that I envied and resented their inheritance. I no longer correspond with a family member who told me that they would have more things if they hadn’t had children. My tax preparer last year exclaimed, in a shocked tone of voice, that I hadn’t made any money at all last year!
Well, yeah. After you have been referred to palliative care you just don’t worry about money anymore; I have everything that I need, and why would I want more? My prognosis has improved since then, but the lesson remained. Demon’s thoughts about the divisions between the people of the land and people who live in cities based on economies remain with me. In a way, the division between the healthy and the chronically ill is similar. The divisions between different ethnic and religious groups. The divisions between gun owners and those of us who want gun regulation. How many of these divisions are rooted in the underlying social/economic structures glimpsed in Demon Copperhead? I guess you could say that this book was life changing. I’m knitting to a new book these days, but the reflections rooted in Demon Copperhead go on.
Don’t you think that the new blankie looks nice with my fur? The Mother of Cats made good progress this week with 6 more hexagons knitted.
The weather suddenly turned nice this week and the Mother of Cats has been letting us spend more time out on the catio. WE LOVE THE CATIO!!!I mean, there is so much stuff to see out there that we never ever really saw before, and it keeps on changing all day long. The leaves move all by themselves!! There are more bugs than Mateo can chase, and this squirrel hangs around barking at us. Mateo wants to go play with it, but the Mother of Cats said no. She kind of says no a lot to Mateo. He kind of deserves it!
I’m not sure that this squirrel wants to play with Mateo the way it carries on up in the tree… so much noise!!
Luckily for Mateo the baby bunny is starting to get more used to us and comes out when we are on the catio. At first it wouldn’t come out if it even suspected that we were there, so Mateo had to resort to watching it from afar…
Eventually, the bunny began to come out to munch on dandelions while we were on the deck right by it. Now we can watch it up close as long as we move sneaky. Mateo is beside himself with excitement and I have to admit, I really like it too.
Do you see how close I can get to the bunny now?
Friday we spent all morning outside. The Mother of Cats was working on planting new flowers while we snoozed under the garden chair on the deck.
Do you see how nice these flowers are?
Lots of birds stopped by the yard: a blue jay, a robin, mourning doves, and even a crow. The leaves on the trees had just burst out of their buds that morning, and the ill-tempered squirrel was literally frolicking in the grass of the yard. It was a perfect, perfect morning.
Until the Mother of Cats looked up in time to see Mateo streaking across the lawn outside the catio wire…
I told him not to do it…
Soooo… there is a little problem with Mateo. He likes to streak through doors, but if he thinks that he is trapped on the other side, he has a TOTAL COW with so much yowling and frantic racing around that it is just horrible to watch. That’s exactly what happened when Mateo figured out that he was trapped on the WRONG SIDE of the wire. The Mother of Cats put me into the house, and then went outside the wire to catch him. Nope. Nope. Nope. There was no catching that little CoalBear because he was too intent on getting back into the catio, he is covered in slippery fur, and he just kept racing past her and pawing at the wire. He acted like he was afraid of the Mother of Cats! Did I mention that he was yowling? The dog next door started barking, all the bunnies and birds were long gone, and things didn’t look good until the Mother of Cats finally managed to herd him towards the opening in the wire so he could return to safety. Whew. She let me back out, got the staple gun to secure every single inch of wire so that there were no gaps at all, and then turned around to see…
Mateo leaping off the table and over the catio wire like a freaking gazelle!!
Cue the yowling, frantic racing and wire pawing … Thank heavens the next-door dog had been taken away and wasn’t barking anymore. Yeah. We had to go through the WHOLE THING AGAIN to get him back to the safe catio.
Mateo: Hannah called me names after we got back into the house. Why is she so mean to me?
Today we are staying indoors and taking it easy. The Mother of Cats moved the table so that it is farther from the wire, but we can’t go out unless she is right with us.
That’s okay. During all that commotion a freaking MOTH got into the house.
Mateo: best cat toy ever!
So now I’m hanging out with the Mother of Cats while she knits, and Mateo is relentlessly tracking the moth. He is such a silly, silly boy.
Hey. I know that I’ve been missing for a while (again). In my last post I wrote about my upcoming trip to the cath lab to get a right heart catherization. This procedure involves having a small sensing device threaded into your heart to check (in my case) the internal blood pressure. Normal pressure in the right side of your heart should be about 14mm Hg; mine had measured 44 mm Hg in an echocardiogram so my cardiologist wanted to get a direct reading.
Here I am, rocking my scleroderma symptoms along with the cath wound. Puffy hands, bluish nose and lips, tons of little red dots on my face… That bandage came off the next day and the entry wound healed right up.
The procedure went well. My pressure measured in the low 20s, which was soooo much better than my cardiologist feared. The number was higher than the last time I had a direct measurement, so my pulmonary hypertension has advanced, especially since I am now on medication to treat my condition, but I’ll take it! It was, once again, a really positive experience and I felt well cared for by all the staff. I was pretty exhausted, hungry, but upbeat on the drive home.
Then I went into a flare… I slept for almost the entire week after the procedure. Seriously, like 12 hours a night and a couple of naps. I had to go back onto daytime oxygen. My hair started falling out again. I was dizzy and exhausted. My joints really hurt. A flare.
This week I’m finally awake again and I pulled out the blanket that I’m knitting. I knitted more hexagons and measured the blanket on the bed. I went out and bought more yarn. I have the hexagons to add another row and the blanket is slowly growing…
I think that I’m going to need more yarn… this is the Nectar Blanket by Ysolde Teague.
I’m really happy with the progress of the blanket, but I have to admit that it is becoming a little boring. I dream of other knitting projects as I sew the hexagons together. I have a serious urge to knit a new sweater in some fabulous colors.
Look at this little topper sweater!! It is called La Prairie (by Joji Locatelli) and I seriously want this sweater. I want to knit in cool colors. Did I mention that I live on the edge of the Great Plains? I long to wind yarn and to cast on and to start knitting those waves and bobbles…
I broke down and bought this kit to knit the sweater online a few weeks ago.
Don’t you love these colors?
The trouble is, I just have to dream and fuss about colors before I am happy. I’m not sure about the order in the kit yarn. I’m not completely a fan of the middle yarn, and I feel like the lavender should be in the middle. I’ve been digging in the stash and trying to image the finished product with other blends of color…
Here are three more spins on the yarn. I like the one on the left the most, with the yarn fading from dark purple to the light grey at the sleeves and bottom of the sweater, but I’m kind of interested in the middle and right versions. I have to ask myself… which version will have the most flexibility in the wardrobe? Definitely, it would be the first spin on the kit, the version with the light grey at the sleeves.
I also desperately want to buy yarn to knit a Soldatna Crop sweater, and some new arm warmers, and then there are those PICC line covers and hats to get done… Did I mention that I have been looking at more yarn online and dreaming of sweaters with lots of colors in DK weight yarn? I’m totally on a knitting drive, but my wrists are not on board with all this needle action. It could be that I’m not completely done with the flare…
Sigh. Guess I’ll just cast on another hexagon or two…
PS I’m still dealing with shortness of breath and low on oxygen; lung testing happens next month as my doctors continue to sort me out. 🙂
You know, I think that synchronicity is a real thing; you just have to pay attention to what is going on around you. Sometimes, if you take notice, the world hands you just what you need at that moment.
Scleroderma has been kicking my butt lately. Having improved dramatically over the summer and sailing through my heart/lung testing last fall, my doctors were pretty upbeat when I reported worsening symptoms while visiting them in late winter. They ordered some testing, but they were also very reassuring.
A week ago I arrived at a Kaiser facility bright and early for a routine echocardiogram and 6-minute walk test. The echocardiogram did not go well (usually they don’t hurt, and what was up with having to pause so I could pant a little to catch my breath…) and I was in the red zone (the pulse oximeter starts glowing red if your oxygen drops below 90%) after a minute of walking. The test was halted after 3 minutes, and the concerned nurse walked me out to the elevator.
Ugh. Not good, little BLZ, not good. Refusing to overreact, I went to my favorite yarn store on my way home, bought some great yarn, and then hit Starbucks by my house. It was a bright, blue day and I headed out to the deck to knit.
I took this picture of Hannah. Look at that bright, blue sky!
Do you know the quote by Elizabeth Zimmerman that goes “Knit on, with confidence and hope, through all crises.”? Yep. That is a quote to live by! I cast on a new hexagon for my blanket and started knitting. I felt myself settle inside, my breathing steadied, I began to process what had happened, and my anxiety faded away. Scleroderma is a monster, and by the time I was casting off the hexagon, I was ready to once again face it down.
This post had appeared in my knitting group on Facebook from Michelle Obama a few days before:
Well, look at that: Michelle Obama is a knitter! Yay! It looks like she also knows about the Zen of knitting and the ability it has to bring calm and purpose to a simple activity while you reflect upon and process problems large and small. I knitted every night to finish my teaching days. I knit in hospitals. I knit in meetings. I knit just about everywhere I can, and I especially knit to deal with the rolling shitshow that is my chronic illness. I went and bought Michelle’s book.
Thursday morning the results from the echocardiogram were posted and a couple of hours later my cardiologist called me. I was knitting and ready for the call.
For the first time the words stage 3 heart failure were used in the discussion with my doctor. My pulmonary pressure is higher than ever before and there is more fluid around my heart. It is not clear if my symptoms are caused by worsening pulmonary hypertension or pericarditis, but the only way to sort this out is to go back into the cath lab and directly measure the pressures with a right heart catherization. It may be both. I will need a different treatment regimen. An emergency referral was put in and tomorrow I’m heading back to the hospital for the procedure. This is what happened the last time I did this.
My pulmonologist, who works closely with my cardiologist and rheumatologist, saw me on Friday for a lung function test and office visit. My lungs are hanging in there, but my ability to diffuse oxygen into my bloodstream has dropped significantly. I told him about the upcoming trip to the cath lab, and he started checking those test results. I’m not going to lie, it is a little alarming when your doctor says, “No, no, this is not good. I am not happy with this at all.” More testing has been ordered. He emailed the other doctors on the team to start the discussion about what changes should be made with my meds.
I took this picture of my new Goldwing sweater in his office the day that I met him. If you are going to scary appointments, armor yourself in your favorite knits!
This weekend I started reading The Light We Carry and was amazed that it starts with… knitting. Serendipity strikes!! Michelle Obama began knitting at the start of the pandemic as she struggled with the lockdown: grief, isolation, loss, and everything else that happened in that time. It became an important vehicle for processing, recovery, and perspective for her. The daughter of a father with MS, she is very aware of disability and how it absolutely impacts how someone like me can view myself and the rest of the world. She talked about using tools such as the cane that her father needed to empower ourselves to deal with what comes our way. Her book appears to be a toolbox of different strategies to cope with the challenges in life.
For the first time since all this started happening last week, I cried. This book is absolutely, positively, what I needed to read right now as I pack my bag for the hospital and prepare for what is coming my way in the upcoming days and weeks. It’s like someone could see right into my heart and lit a light for me. I will carry that light along with its warmth and glow tomorrow as I join my doctor and the pit crew in the cath lab. Whatever happens, I am positive, I will glow, and my light will shine.
So, Michelle, whatever can I show off as a favorite knit? Every single item that I cast off my needles has left me with a sense of purpose, accomplishment, and fed my creative needs. Knitting helps me cope with adversity, plan my day, and work through problems. Knitting delivers calm in a time of crisis. Knitting allows me to deal with an unpredictable autoimmune disease that delivers an uncertain future. Knitting connects me to all the knitters in the past and provides gifts for others as I pay forward. It is essential for my being and a vehicle to connect with others.
Here are some things I’m really pleased with: Goldenfern, a knitted copy of a beloved (and lost) cat, baby booties gifted to a neighbor knitted from a pattern handed down through 4 generations of my family, the hats and PICC line covers that are donated to Kaiser infusion centers in my area, and Mando (and Grogu) mitts for a knitworthy niece.
Tomorrow I’m wearing arm warmers and knitted socks into the cath lab. Take that, scleroderma.
Behold, I carry my (knitted) light with me!
Did you wonder what a BLZ is? That’s me, the Blue-Lipped Zebra!
