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.
There were lots of adventures on the flight back from Japan (well, I slept through most of it because… I’m a cat) as Sharon threw a gobshite passenger off the plane (with a parachute, of course), discovered Chad that Golden-Bag-of-Cat-Treats-Thieving Worm hiding in the wheel well of the plane, took a nap in the catnip-scented oxygen of the cabin, and then finally tackled Chad off the plane in a butt-waggling zoom of epic proportions that allowed her to recover the priceless bag of cat treats while Chad fell through the clouds. She did throw Chad a parachute and an inflatable raft, but we kind of don’t care what happened to him because there was sushi and Meow Mix for all of us on the flight. Did I mention that there was catnip-scented oxygen in the cabin?
(Okay, Sharon did post a photo of Chad falling through the skies in his parachute, so he did get it on and hopefully landed safely…)
Anyway, the Mother of Cats finished the shawl, and I got my wings!!
Now the Sharon Air MKAL is over and the Mother of Cats has returned to knitting a sweater that had been hibernating in a bin for the last few weeks. I still have my blueberry box from the flight, and since I returned in Cardboard Class I brought my blanket and all the wonderful yarn that I bought the Mother of Cats in Japan home with me with no problems.
So now the Mother of Cats is happily knitting away on her new sweater (the Lace & Fade Boxy sweater by Joji Locatelli) with Mateo (the CoalBear) and I’m catching up on my sleep in my blueberry box. The Mother of Cats taped my wings to the box, and I’m still dreaming of all the places that I visited during the MKAL adventure. Cairo. New Zealand. Paris. Istanbul. Japan. So much fun!
Now it is fall outside and the flies seem to have vanished with the backyard robins but there are crickets and bunnies. Luckily it is cooler so I can play with the CoalBear in the daytime, and I’ve started sleeping on the bed with the Mother of Cats at night again. The Mother of Cats bought me and the CoalBear a lot of new toys, and we are playing chase-chase through piles of crunchy brown shipping paper. I’m returning to my old routines and I’m actually glad that my adventure is over. It is good to be home.
There I was, all cozied up in my cardboard blueberry box, flying to Morocco, finishing off my inflight drink of warm milk with whiskey when the news came in… Chad had gotten on a flight to Tokyo! WHAT?!!! How did that happen?! We were really looking forward to Morocco!! The Mother of Cats had just made her favorite quinoa dish (Quinoa and Pistachio Salad with Moroccan Pesto) and had settled down to chomp some while getting all her knitting supplies organized for the next clue drop of the Sharon Air MKAL, and … no Casablanca? Nope. The plane made a sharp left turn and pointed its nose towards Tokyo.
Oh. We are kind of excited about Tokyo! The Mother of Cats has been there before and she used to live in Yokohama, Japan. We weren’t in Tokyo long as we had to grab the bullet train heading south to Fukuoka, Japan. Sharon ate 4 bento boxes on the way, but mostly we knitted and drank tea on the trip as we had stuffed ourselves on katsudon (which the Mother of Cats just loves!) before we got on the train and the Mother of Cats was sort of regretting the decision… hey, I told her to not order a second bowl, but does she listen to me? Anyway, Sharon ended up recovering from the chase in a hot spring, and that Fungus Boi Worm was there too, but he got away somehow, and we were left in southern Japan to knit, relax, and have fun with Chad’s AMEX card.
Here’s a closeup of the new section of knitting.
So that is what’s going on with the Sharon Air MKAL. I’m so happy that I had cardboard class for that long flight, but I’m a little concerned about what is going to happen to my blanket if we need to fly out tomorrow in another class. Please, Sharon, no litter class for me and my blanket, okay?!
This is Hannah, signing off.
Notes from the Mother of Cats:
One of the hugely serendipitous events of my life was being sent to live in Yokohama as a young bride in the early 1970s by the US Navy. Why? More than 50 years before my own grandmother had arrived there as a young bride herself. My mom was born in Yokohama, and her first language was Japanese. How crazy was that?
My mom, by the way, was Swedish-American, and her mother could speak Swedish.
I still miss the Katsudon that I ate there.
Many members of the MKAL posted pictures of fabulous bento boxes that could be eaten on the bullet train. I’ve eaten bento boxes, but never came to love them, because… katsudon!!
While I was shopping for yarn for the Mother of Cats in Istanbul, Sharon from Security (Officer of the Paw, Defender of Snax) got out of the pokey because there was a sighting of Chad with a big bag and the sparkling (diamond-laden) yarn that Sharon was accused of stealing. Obviously, the wrong person had been apprehended, so she was out the door and off to the nearest full-service sushi restaurant. That’s one important question answered: you can get sushi in Istanbul! Also, she seems to have gotten her flamethrower back, too. How does she pull these things off? Anyway, knowing that Sharon scored a three-foot-long platter of sushi made me hungry, so I did a little cookie liberation operation of my own:
Then Sharon left me in Istanbul and took off on the most incredible adventure of all time. She caught a sub and took off through the Mediterranean waterways in chase of Chad. She broke down and got the sub fixed up in Greece, and then broke down again off Gibraltar. Luckily some sneaky people arrived to give her a tow to a sub-repair facility in Atlantis, and since Sharon was sworn to secrecy I’ll never find out where it is. I wonder if they had really nice kitty stuff there? I can always use a new blanket, some toy mice, and why does Sharon get all of the exotic sushi…????
Anyway, Sharon finally got the sub all fixed up and following intel provided by her new friends she was back on the chase and followed Chad and his bag of stolen goodies to… Morocco!!!
Now I’m stuck in Morocco until Friday when the new clue drops. Did I mention that I still have Chad’s AMEX card? Time to head out shopping!!!
I sure did love being back in cardboard class again! I brought my blanket along and even got some new yarn for the Mother of Cats shoved in there. If I have to go by Litter Box class for the next leg of the chase, I’ll be shipping all that stuff home. Hopefully I can use Chad’s AMEX card for that, too.
I’ve been collecting new diagnoses over the last year like an out-of-control yarnaholic shopper at a fiber festival. Yeah, that bad. That’s how my yarn stash got so out of control… I mean, you never know when you will need that fabulous color in the future, it is one-of-a-kind, and it’s cashmere… Anyway, let’s get back to the topic at hand. The last year has been really eventful, and the new tests, diagnoses, and drug interventions keep rolling in. Here’s the chronicle of events:
An early summer echocardiogram last year showed that I had developed a type of heart failure called diastolic dysfunction. Scleroderma is causing scar tissue to form in the muscle of my heart.
On September 1st I had a right heart catherization that showed that I had a hole in my heart that was disrupting the flow of oxygenated blood to my body. Oh. That explains those blue lips I’d been sporting around town.
I went into a flare of my systemic sclerosis (scleroderma) symptoms because of the increased blood flow due to the drugs.
Testing in February to hunt for the cardiac shunt (hole in my heart) revealed that there was something going on with my lungs. A subsequent CT scan in March showed that I had developed autoimmune pneumonia in both lungs, a condition called interstitial lung disease. The cause of the ILD was confirmed by a lung biopsy in May. Yep. It is scleroderma related, but I was still forced to get rid of all my down products in the house. I miss my down comforter…
All summer long I have gone through a staggered course of drug interventions as my doctors worked to get my lung disease under control.
So, I’ve been taking a lot of drugs, and all of them carry some side effects. I became dizzy from one, my blood sugar zoomed up, and my vision became foggy. Another is causing hot flashes. One of them causes muscle pain, and a couple of them are seriously interfering with my sleep. Two drugs cause edema, so I’m taking another drug to combat that. Two weeks ago, I started the last drug on the list, Ofev, which has a list of side effects that made me pause a few days before taking the first pill.
Nausea, diarrhea, vomiting… well, okay. That’s stuff that I deal with all the time because of scleroderma…
I had to go through a 30-minute phone interview with a pharmacist before the first 30-day shipment of the drug could be sent to me. I will need to get blood work done every single month to check my kidneys and liver before I can receive the next 30-day shipment. I need to be vigilant about watching for bruising and the symptoms of blood clots, including heart attack and stroke symptoms. One of my sons is checking in on me daily.
So, here’s the deal. I’m in a lot of online support groups where people are afraid to take drugs to treat their systemic sclerosis (scleroderma) because of the side effects. We live in a world where people are afraid to get vaccinated because of possible side effects. We live in a world where people are resistant to wearing a mask because of… well, they will tell you. They have more reasons than I have time to list, quite frankly.
This is kind of nuts, in my opinion. Did you see that list of diagnosed conditions? Yikes. Not good, little BLZ, not good. I’m facing down some really serious stuff here, and I will take these drugs, get through the side effects, and fight this like the hail-battered and grasshopper-savaged sunflower that I am!
Two weeks ago, I gulped down the first Ofev capsule. All those nasty GI symptoms arrived and had their way with me for several days, and then I was through it. I’m now on the final doses of all my drugs, and the sleep disruption is improving, the dizziness is gone, and the muscle pain is receding. I’ve learned to never, ever drink elderberry juice, and that green chili actually improves GI inflammation. I can do this, yes, I can!!
My niece referred to my battles with my disease and the drugs that I take as “rolling dice with the reaper”. I guess that is a one way to look at it. The other way is… you have to play to win. I chose to take the drugs; I chose to play. Hand over those dice, reaper!!
Last week I went to get my first follow-up CT scan of my lungs. “You can take off your mask, if you’d like,” said the technician. Nope! No one with a list of diagnosed conditions like mine should take off their mask in a diagnostic facility attached to an urgent care center. I roll more dice than I should as it is! Grumpy, the technician did my CT scan while I kept my mask on.
The message from my pulmonologist came last night. My lungs show improvement, and there is no new fibrosis.
August wasn’t the best for me. I had just come off a course of steroids to treat my lung disease (there’s another post coming) and I seemed to be struggling with withdrawal. I hurt everywhere. Sleep was difficult. I was sad. I cast on lots of projects and failed to make much progress with any of them because I was struggling with tendonitis. I kept trying different needle sizes and yarn types all month, but nothing worked. Here’s the list:
A new sweater, Lace & Fade Boxy by Joji Locatelli. I think that I have a couple of inches done…
A standing cat being knit in cool Noro yarn. For some reason I decided that the cat would be outstanding knitted in spring colors (cream/blue/raspberry/green) as a Noro calico cat. Right now, the cat has her front paws and no head yet…
A crocheted bag being made in Noro yarn and fancy squares all attached together. I have a lot of squares done, but nothing is attached yet…
A new pair of socks. One sock is done…
A new pair of mitts. One mitt is done…
A PICC line cover that is… half done.
My Sharon Air MKAL shawl. That one I am keeping up on because Hannah is keeping me on track.
I did get some sewing done, but mostly I lounged around and read books. Well, I listened to The Murderbot Diaries a couple of more times. I love that series!
The audiobooks are easy to listen to, the story is easy to follow, and the main character (Murderbot) is so engaging/snarky that you are in its camp from the moment you meet it. Murderbot is a machine/organic construct that specializes in security. A free agent because it has hacked the device that is supposed to control it, it is slowly finding its way to personhood and working out what it wants. It also is continuing to work its old security job while consuming tons of entertainment media. I love Murderbot! It listens to its favorite soap opera-like serial over and over while it deals with anxiety and blocks of down time; I listen to Murderbot over and over while I deal with my own. I smile to myself in moments of self-realization and wish that I could watch The Rise and Fall of Sanctuary Moon along with Murderbot. Murderbot considers its primary client, Doctor Mensa, to be an actual intrepid galactic explorer and I try to be like Doctor Mensa, too. See, a great series of books for sad days.
It’s hard to talk about this book without creating spoilers, but I’m going to try. This is the story of an extreme friendship between two game developers that is actually a love story. It is about betrayal, broken dreams, the creative drive, and the endurance of friendship. I just loved it. Oh yeah, that title comes from MacBeth’s soliloquy about life: “full of sound and fury, signifying nothing.” Not the best message for a person who hurts all over and who cried in two different doctors’ offices last month, but still in a strange way comforting.
Then there were these two books:
Have you ever had an urge to do something but didn’t know why? I can totally identify with this as a knitter who is making a standing cat in crazy colors. I also collect empty notebooks to write in, a habit that went on for years before I finally began writing. Then there is the yarn stash… What would happen if you lived in a community where there was the infrastructure to allow you to just follow your dreams?
In these two books we meet a robot (who is the descendant of ancient robots that left the world of humans and went into the wild) and a monk who lives in an environmentally sustainable world with little technology, a world where everyone is accepted for who they are and supported by a barter-driven economy. The robot and monk meet up and begin a pilgrimage through this world together that is compelling and positive; just what I needed for reading material last month. The message that they pursue in their journey is… who am I and what do I want? The final conclusion is one that I could totally identify with… it is enough to just be happy in the moment.
Now it is September and what am I reading?
Umm.. I’m afraid that I have to admit that I have started Murderbot again, but only because I can’t seem to find The Rise and Fall of Sanctuary Moon on Netflix. I am considering looking into Coronation Street…
By the way, I am through withdrawal and the hurting has stopped. See. Sound and fury, signifying nothing. The knitting is back on!
Time for some Sanctuary Moon… err… Murderbot while I knit.
September 1st. I woke up this morning to the sound of geese flying over the house, honking away as they crossed just above the treetops. It is a bright blue day here in Colorado where I live, and the garden and the lawn are recovering after the extreme heat of the last two months. The robins are now gone, and there is just one bunny left in my yard. The fall plants are getting ready to bloom, the first golden leaves are appearing on the locust trees, and the end of summer is upon me.
The stonecrop is starting to bloom, the viburnum berries are turning red, and the last columbine blooms of the season are appearing in the cooler weather.
Monday was an exciting day for the cats as I had the ash tree out front pruned. The tree was damaged in an early heavy snowfall, and I wanted to make sure it was given every opportunity to flourish in the aftermath of losing several limbs.
I love that ash tree! I have it treated for ash borers every year (the emerald ash borer just arrived in my area of Colorado… not good news for ash trees!), and last year I even had it deep watered during the winter to protect it from drought damage. It puts shade onto my house, is an essential component of squirrel route one over the house, and serves as food for one of my favorite butterflies…
Swallowtails are big butterflies! They are so big (they don’t hold still long enough for me to measure, but they are like 3-4 inches…) you can sometimes hear them flapping as they head across the yard, darting to and fro as they check out the various blooms in the area. They are much faster and more robust than your usual butterfly, so they are hard to grab a shot of if they don’t settle down onto a flower to snack on some nectar. They love my butterfly bushes, so I planted more last year hoping to lure them to the yard. I also left the stump of an ash tree that I lost a few years ago in the back yard, too.
Okay, I am a geek for sure. I didn’t cut back the suckers from the stump so it would grow into a shrub with enticing ash leaves for swallowtails to lay eggs on. The shrub is also important shade for baby bunnies, but that is another issue. All that lawn damage around the shrub is from the bunnies eating the grass down to the dirt, and then rolling around in the dirt, and then doing a little digging on the side, but… this is a post about butterflies so I will move on.
Several times this summer I saw swallowtails in the ash shrub. Yay! The ash tree isn’t food for the butterflies, but rather food for the developing larvae from the eggs that the butterfly lays on the leaves. It is my hope that there were some eggs laid in there that will lead to new swallowtails in the spring next year. I haven’t seen any of the caterpillars, but something has been munching on the leaves…
The caterpillars become pupae eventually and then hide themselves away in a sheltered location for the winter, emerging as butterflies in the spring. It is my hope that there are some pupae tucked away in a bunny-proof location near the ground and along the cut-off trunk of the old tree where they will gradually transform into the fabulous flyers of the summer.
The guys who pruned the ash tree out front also removed a struggling maple tree from my back yard. They gave the ash shrub some side eye and offered to take it away too, but I was like… NOOOOOO… I need that for my backyard wildlife…
Did they not notice my butterfly bushes? This backyard is a whole butterfly ecosystem that I have going…
Summer is on the wane, and the swallowtails are gone along with the robins and almost all of my bunnies. Soon the leaves will fall. Asleep, hidden in the debris of summer, the butterflies are secretly transforming and biding their time until May. Sleep well, little guys. I can’t wait to see you next year.
First, I caught my flight out of New Zealand on Sharon Air to Paris. Paris!!! Can you believe it? I had a great flight because I got to fly Squeaking Mouse Class this time which meant I had a nice seat to sleep on and I was allowed to bring onboard luggage. I brought my blanket to sleep on, of course! Then we landed at Charles de Gaulle airport in the morning and grabbed the bus that Sharon had arranged for us. I hardly had time to look at the city because I had to do some shopping (Chad dropped his Merican Express Card and Sharon gave it to us because… she really hates that Chad!!) before rushing to Gare de l’Est to board our train to Istanbul.
The Orient Express!! Everything was going just great, and we were having a exceptional dinner when suddenly the lights went out and… when they came back on the fabulous diamond skein of cashmere yarn that this lady with a really loud voice and super bossy attitude was showing to Sharon was gone! Sharon was accused of taking it (well, there was this little bit of red sparkly yarn on her whiskers) and before you knew it, she was locked into her berth and Chad was running (slithering?) across the roof of the train with just the tracks to show that he had been there. Now we have to find The Golden Bag of Cat Treats and this diamond yarn. What a mess. This is going to be hard because I think that Istanbul is a big place and there are a lot of places where a Death Worm named Chad could hide the goods…
That was our week in the Sharon Air MKAL. In the knitting story we ended coming into Istanbul where Sharon was going to go into the slammer while her security contacts worked behind the scenes to get her released, and in the real-world Sharon was thrown into Facebook jail for an entire month which basically is for the rest of the MKAL. What unbelievable Egregious Bullshittery (EB for short) that is!! The Mother of Cats has been wondering how to report EB to Facebook when she hasn’t been knitting.
This week the clue took a turn that we didn’t see coming. The shawl had been a growing “V” shape, but this week the clue said to only knit on one side of the “V” so that is what the Mother of Cats did. Look at what is happening now:
So now we are done with the third clue and the Mother of Cats is just sady knitting away on a pair of socks while we wait for the new clue to arrive on Friday. Poor Sharon. Will she get out of the slammer? Will she get her flamethrower back? Do they have nice sushi for cats in Istanbul? I can’t wait to see what happens next!
I was so excited while I was waiting for the clue 2 to arrive so I could know where we were heading next to catch Chad the Mongolian Death Worm who had stolen the priceless Golden Bag of CAT TREATS. He had been last seen in Cairo wearing a parka, so I knew that I was catching a flight to somewhere cold, but I never expected that I would he heading to… New Zealand. Oh. It’s winter there. The other thing that I didn’t expect was that I would be flying…
Yeah. Litter Class is like coach in people airplanes. It’s towards the back part of the plane and all of the litter boxes are there at the back of the section. You don’t get a nice chair, or a cardboard box, or a blanket, or anything to sit on.
You are assigned your own spot on the floor and have to stay there. You need sharp claws because you need to dig in really, really hard during the takeoffs and landings or you’ll slide into some other cat’s territory, and you know how that is going to end up. Personally, I don’t like inter-cat conflict all that much, so I really used my claws! We did get a nice Fancy Feast meal and there was an interesting bird movie, but I was so glad when we landed in Auckland… only, our flight continued on to New Plymouth because we had to go to Mt. Taranaki because that’s where that annoying beyond belief Death Worm (named Chad) slithered off to with the CAT TREATS!! What a beautiful mountain! Why did he take the treats there, and what am I going to do to get my paws warm again!!! I hate cold!
The Mother of Cats also took nice breaks to give me kitty cookies (I don’t work for free!! Seriously, what were you thinking of?), and even with the breaks we were done by the end of Monday.
I’ve taken on a huge adventure! I heard last week from Sharon from Security that there has been a huge crisis… the Priceless Golden Bag of Cat Treats has been stolen by Chad the Mongolian Death Worm from the Museum of Gyptian Civilization in Cairo. Sharon from Security needed me to head right over to Cairo to help out with the investigation.
I immediately dusted off my passport and booked a flight to Cairo on Sharon Air so I could join Sharon in the investigation. Sharon made the arrangements for me to fly Cardboard Box Class (instead of Squeakin Mouse Class or Litter Class) which was just fabulous because…
Anyway, my flight left last Friday, and I was off to help the best I could. That Chad is a sneaky one and I think that he probably already slithered (slimed?) his way out of Cairo and before you know it, I will be back in the air heading to a new location.
Okay, if you haven’t figured it all out yet, I am doing the Sharon Air MKAL with the Mother of Cats and we started with the first clue last Friday. The Mother of Cats worried about the colors of yarns a lot and kept digging around in the yarn stash for a couple of weeks looking for nice yarns to use. She finally settled on these:
I’m not really, really in Cairo, but is sure is fun to pretend that I am. I bet there are great bugs there for me to chase. Did you see that my job on the passport is “Flycatcher”? I am such a great flycatcher that I knocked over a lamp and tore down some curtains this week. The Mother of Cats was pretty cool about all the commotion, but I think that I had better take it easy for a couple of days. There was also a problem with an orchid plant hitting the ground, but the CoalBear did that one… did I mention that there was a fly?
I’ve been taking my job as knitting helper really seriously and the Mother of Cats only make a few mistakes (Sharon Snax) and hasn’t done any whining or done anything to earn a citation from Sharon. That Sharon, she doesn’t put up with any whining or questions from humans who stupidly failed to read the directions which is absolutely reasonable, right? I love Sharon! Did I mention that the cardboard box on the plane had a little hole in it so I could poke my neighbor? Yay!
Sharon is really busy and won’t have time to send us more clues until Friday so I’m going to just keep myself busy for a couple of days while the Mother of Cats knits on boring stuff like socks and hats and who knows what else. Maybe she will knit me another toy mouse. I hope that she makes me a warm parka because Sharon did drop a clue about having to go to somewhere cold for the next part of the investigation. I don’t like snow very much; nasty stuff, snow. Maybe she can knit pink booties for my feet? Darn it, this investigation stuff is hard work!
This is Hannah, signing off.
Sharon loves sushi, but I am going to go hunt up a fly to chase.
Note from the Mother of Cats: Sharon is Casapinka’s employee/security specialist/cat and this MKAL is run by them. You can check out my Ravelry page here if you are interested in knowing more about my yarns.
July was quite the month! A lot of it was hot, really hot. I felt great for a part of the month due to a drug-induced power surge that carried me through lots of landscaping in the back yard. I read two books that were just exhausting. I went crazy for color and bought more yarn. I cooked, sewed, knitted and planted lots and lots of new plants in my gardens. A great month, July!
Today I drank my morning latte out on the deck and thought about everything that got done last month. There were new birds in the yard (blue jays!) and a small flight of honking geese flew over me as did my watering. Most of the baby bunnies have moved on, and the butterflies of July are gone. The flowering plants are recovering after a short break in the heat last week and I look forward to the late summer blooms. It is now August, but I can sense the looming presence of autumn just over the horizon.
In the yard this morning: a just bathed robin fluffed out and drying on the fence, the very first hydrangea bloom on my shrub, and a woodpecker (!) stabbing for insects in my freshly watered lawn.
So this was the month:
I read two books that were a handful. Black Leopard, Red Wolf is confusing, exhausting, and maybe the best book I have read this year. Think about the Lord of the Rings trilogy set in African antiquity, awash with magic and violence, and you would have this book. Hummingbird Salamander is a cliffhanging ecothriller that also chronicles the trainwreck of the main character along with the impending crash of the planet. Another good book, but one that I feel went too far down the climate change rabbit hole. Neither one of these books is uplifting. Nope, not at all. Worthy reads, but not good entertainment on a blistering hot day.
That’s it. In July I used up 4.75 skeins of yarn. I knitted one chemo hat and 5 PICC line covers. I finished a sweater and a pair of socks. You already know about the books.
I have cast on several new projects, and I’m still feeling pretty ambitious and getting things done, but the prednisone party is definitely over. In my new, dialed down state, I’m slowly knitting on a new cat, crocheting squares for a still undefined purpose, and sending my loom some regular side-eye. The spinning wheel has been put back into a corner but I’m hoping to return to it when the weather cools. I’ve pulled out a quilt project and I need to head on over to YouTube again to learn how to paper piece…