Midnight Knitter

Hannah and the CoalBear: Chickenitis Continues…

Hi. I’m Hannah.

I’ve really been keeping a close eye on the Mother of Cats.

The Mother of Cats has been completely out of control for a few weeks now. She spends all her time working outside and hunting for lavender plants to put in the garden. I mean, there is a lot of lavender now, and it kind of smells funny. What is up with that?

See. Lavender. She now has five different types of lavender growing in pots on the deck along with the baby roses that get way too much attention. Why does the Mother of Cats play with plants when I need her to play with the CoalBear so he doesn’t bother me?

The only good thing about the gardening is this wagon that the Mother of Cats bought for us to play in. Then she took it outside. Why does she do these things?

When she isn’t outside working in her gardens or hunting for more lavender, she is knitting CHICKENS. Lots and lots of chickens. I really don’t mind that she is knitting, because I really like to hang out with her while she is working, but this is getting ridiculous. The chickens are starting to take over all of the room on the back of the loveseat where I like to sleep.

Do you see this? One more chicken and I won’t be able to fit on up here. Why is she doing this????

To make things worse, she saw some photos of LITTLE chickens on Facebook that made her go crazy in the yarn stash pulling out yarn for chicken construction. Then she had some people ask for chickens. Then the people who got the chickens had friends who DESPERATELY needed a chicken for themselves. I think that the Mother of Cats should charge people for the chickens (TUNA FUND!!) but so far, she gives the money to her community knitting group, Frayed Knots. Why is she doing this? Now I’m getting pushed all around by the chickens, and I’m not getting any tuna out of the deal, either.

Here all of the finished big chickens to date. She has a couple of other chickens that still need their stuffing.

The three chickens in the individual chicken photos (did you notice the big lavender plant behind the chickens?) were mailed out this week. The blue one with the little shawl went to a lady whose husband is battling cancer, and the other two flew to members of the Mother of Cat’s family. Good riddance!!!

Sigh. Is the chickenitis getting better now that some are gone? No. No, it is not. She’s determined to make even more for some people she met on Facebook. Then she went away in the car for an afternoon a week ago and returned with EVEN MORE YARN for more chickens. She says the place where she went for the afternoon needs the chickens.

She says that chickens need to go here. I hope that they take flight soon!

I guess they asked for the chickens. She showed them pictures, and they got really excited when they saw how cute they were. I’d be happy to send them Mateo to keep patients entertained, but they weren’t interested in a cat. Just chickens.

So, that’s all I have to report for the last three weeks. Gardening, knitting, and chickens.

This is Hannah, signing off.

Happy Caturday, everyone!

>^..^<

Notes from the Mother of Cats:

The chickens are knitted from the Emotional Support Chicken pattern on Ravelry. I’ve lately joined a KAL group on Facebook, which is feeding me lots of ideas for more combinations. Today people started posting little hats and shawls that can go on the chickens…
I visited the Kaiser Infusion Center last week to get Reclast to treat my osteoporosis. This is the infusion center that I knit PICC line covers for, and when I told them I was one of their knitters a whole party broke out! There was cheering and general excitement all around, and when I mentioned emotional support chickens, they insisted on seeing the pictures. Yep. They want chickens.
One of my Facebook friends with systemic sclerosis has been accepted into a CAR T-cell therapy clinical trial. She will be receiving chemo and I’m going to send her a chemo hat and, (wait for it), a chicken!
What is CAR T-cell therapy, you ask? It is new technology that is now being adapted to address some autoimmune conditions, including systemic sclerosis. The video in the link above explains how it is used with cancer.

The Scleroderma Chronicles: Resilience

I’ve been thinking about resilience today after this graphic showed up on my Facebook feed.

What is SPIN you ask? It is the Scleroderma Patient-centered Intervention Network.

I’m pretty sure that I was one of the patients in this study. Certainly, I was a participant in a SPIN clinical research study during which I filled out lots of questionnaires about my illness. The focus of the project that I was enrolled in was to see if online educational videos about scleroderma, possible interventions to help with the progression of symptoms, and information about resources could help patients in how they coped. I was tracked for over a year to see how I was doing. How was my pain? How was my sleep? Was I depressed? How severe was my disease, and how did I feel about that? Did I have issues with anxiety? What were my scleroderma-associated complications?

Not surprisingly, the study referenced in the graphic found that they could break patients into 4 groups based on the severity of their disease (Low -> Very High). They found, for the most part, as patients dealt with an increasing disease burden, they coped less well and struggled with depression and anxiety more.

Except for one group of outliers. They had a pretty significant disease burden, but they were not depressed and didn’t struggle with anxiety. They kept rolling with the punches and finding ways to flourish even within the eye of the storm, securing for themselves a better quality of life than others facing the same challenges. I’m pretty sure that I am one of the people in this group of outliers. I remember that I reported that I was having lots of trouble with pain and sleep disruption, but no depression; my current battery of scleroderma-associated complications should put me into the High disease group. Here is a paper where the researchers further investigated the association between disease burden and mental health and resiliency.

I bought myself little roses last week. Look at how cute they are! They are under a red light, but you can still kind of see that they are a peach color.

So, the big question that the researchers are now pursuing is what determines resiliency, and how can these essential coping skills be conferred to other systemic sclerosis patients through training and support.

So, what is resiliency? That was the big question of the day for me as I worked out front weeding a garden. Working outside is now hard for me, but I dragged out a little chair to sit on, put my tools into a crate that was easy to push, and I slowly worked my way along the front walk cleaning up my garden and pulling out weeds. I had to take breaks to pant from time to time, but by the time I was done the gardens looked great! The weather was perfect, there were lots of birds, and one of my neighbors had music playing while he worked in his garage. After a little break on the catio with the cats (coffee and a lemon bar time!!), I strapped on my portable oxygen concentrator and mowed the front lawn. I’ve had a hard week, and I struggled to get myself outside to work in the yard, but by the end of all of this I felt much better. You might even say I felt happy.

Look at how nice the front pot of flowers is looking! I bought a new rug to put by the door onto the catio, Amazon delivered it today, and Hannah moved right in. Yay! Take that scleroderma!! I win the day!! I am happy!!!!

So, what is resiliency? I’m still stuck on that question. I’m pretty sure that it is a state of mind that allows people to focus on what can be done instead of what has been lost. Resiliency allows people to embrace their changing circumstances and effortlessly employ life hacks to get things done while acknowledging that other things are now too much. It must have to do with an ability to name the monsters, stuff them into a box, and put them on a shelf (in the back of the yarn stash) while activating self-advocacy. It must require faith that you will be able to cope with scary things when they come, while still recognizing that you are in a difficult situation. It must require support and resources. I think it has to be an internalized quality: resiliency gives you the self-confidence and self-worth that’s necessary to face down medical authorities and to ask for ~~demand~~ help and answers.

I look forward to what these researchers find as they continue looking at the phenomenon of the outliers: patients dealing with a severely debilitating and isolating rare disease with grace.

I kind of think that they will discover that these people have engaging interests that allow them to have a sense of accomplishment and purpose. I bet that they find that they have pets and people that they love. I bet that they produce something of beauty in their lives. I am almost certain that they will find that the outliers have found ways to communicate in a positive manner with others about the challenges of life with a progressive, and often fatal disease.

Why am I resilient? I have cats. I have yarn. I have curiosity and lots of resources to chase it. I have purpose as I produce donated items for others in difficult situations. I have roses. I have people who love me, and I have people who read my little posts about coping with life on the down slope of systemic sclerosis.

Thank you for being part of my resiliency system.

Hannah and the CoalBear: Baby Bunny, Robins, and Chickens!! Oh, My!!

Hi. I’m Mateo the CoalBear.

Do you see that I’m being a good helper?

This has been kind of a busy week in Mother of Cats Land. We’ve been outside most mornings checking on how things are going in the yard. The plants in the pots on the catio all look good. The bugs have been hopping around and they are SO MUCH FUN to chase. There were a couple of huge developments in the yard that I want to report to you:

The adult bunnies that used to live in our backyard are now gone. We were little worried about them, and wondered if there would be any baby bunnies this year when a single tiny bunny suddenly appeared in the garden by the deck. So cute. Hannah and I spend as much time as we can watching this little guy, and we are happy to report that he is growing like a weed and cavorting around the yard like a big boy. He isn’t even a little afraid of me and I get to get right up within inches of him,,, if it wasn’t for the chicken wire we would be having a great time.

Hannah: knock it off, CoalBear. We all know that you want to eat the bunny…

Shut up, Hannah. I’m telling the story today! The other thing that happened this week is all the leaves popped out on the trees. The Mother of Cats says it is called budburst, and it means that it really is spring now. I think that the robins know this too, because they have been singing like crazy all day and night. Literally, all night. They go crazy at 3am for some reason. I try to get the Mother of Cats up to let me out, but for some reason she won’t get out of bed. Lazy, lazy, Mother of Cats! Be like a robin! Get up and let me outside to see my baby bunny!!! This is what the robins sound like!

Hannah: CoalBear! Get on with talking about all the knitting and the chickens!!!

All right, Hannah. Why are you being so mean to me? You should go convince the Mother of Cats to give you some tuna and then maybe you can take a nice little nap. Outside where you won’t bother me!!

Now that I’ve put Hannah in her place, let me get back to telling you about the week. The Mother of Cats totally snapped, put her La Prairie sweater into time out on Sleeve Island, parked her dragon book back on the bookshelf, started a different book, and cast on a new Emotional Support Chicken. She has been completely out of control!!!! While she has been knitting the new chicken, she has dreaming about more chickens made in different colors; she keeps dragging yarn out of the stash and winding it up into little kits for MORE CHICKENS!!!! This is so out of control. What should I do? I’m just a little cat and it looks like we are having a huge outbreak of Chickenitis. Help! Who should I report this to? Hannah is no help at all. The only phone number she knows is 1-800-SND-TUNA.

Mateo: I have to admit that I have been helping with the knitting. Maybe that will help her get through this crisis… actually, I just like to chase yarn.

This is the chicken that she is working on now, but there is a dusty rose chicken on the way right after this one… and a sparkly blue chicken, and a rainbow striped chicken, and a chicken in fall colors…

It’s another handspun, handknit chicken to go on the couch downstairs.

The new chicken is kind of cute, right? Anyway, that was the week.

This is Mateo the CoalBear, signing off.

>^..^<

Notes from the Mother of Cats:

So, I spun out of control with the reading and knitting this week in response to sudden challenges. I had borrowed an e-book from the library that had to be returned in a couple of days. Oops. Emergency reading time! I have a couple of friends who are struggling with medical nightmares at the moment: obviously, they need chickens!! My cousin contacted me asking to buy a chicken to give a friend whose husband was just diagnosed with a serious illness. My phone blew up Thursday with the news that a member of my family was back in the hospital. The sweater was immediately parked (I was struggling with all the purling on the sleeves anyway…) and I launched the beginning of a flock of new chickens.

What was the book I was on fire to read before it was snatched off my Kindle device by the library?

This is a book that I kind of feel should be required reading for everyone, but on the other hand, it is so brutal and reality-altering I feel that it will be banned in as many school districts as the distraught (and completely misguided) ~~Karens on Steroids~~ Moms for Liberty can get to. If Charlotte’s Web, Harry Potter, and The Hunger Games are too much for these people, this book will make their heads explode. I hope that they read it anyway.

So, this is the book: Chain-Gang All-Stars really made an impact on me. Imagine a system where convicted felons facing life in prison, or who received the death penalty can “volunteer” to join a system that is a reality show where the felons are on teams that compete against other teams and engage in gladiator to-the-death matches in arenas full of viewers. The teams, and individual players, are wildly popular; lots of merch is sold. Any player who survives three years will be freed, but it goes without saying that almost everyone will die. It probably shouldn’t surprise anyone that the members of these teams are more likely to be minority citizens or people who lived in poverty: that is the current prison population.

Everything about this book is crushing in its believability. I am crushed by the possibility. I can see that this could happen in a world where incarcerated people are seen as less than full citizens and without rights. Think of the wildly popular Survivor reality shows. Think of American football, where evidence of concussive brain injury in players was covered up for years. Think of the laws that strip felons of some of their citizenship rights like voting. Think of the wildly misbehaving attendees at some of our political rallies. Think of the horrendous deaths of minority population members (sometimes in public with citizens begging the police to stop) at the hands of law enforcement. Think of for-profit prisons that work their inmates as almost-slaves. Think.

I highly recommend this book.

I’ve returned to A Day of Fallen Night again and I’m quickly finishing it. It has dragons, after all.

Hannah and the CoalBear: Snowy April Caturday

Hi. I’m Hannah.

I’ve been keeping my eye on the Mother of Cats all week long.

It is really cold and snowy outside. I mean, the really wet sticky snow that gets on your paws and squishes up between your toe beans and is just the kind that all cats everywhere hate. Mateo went out a couple of times today and that boy was back inside within 60 seconds flat. Anyway, the lavender and other cute flowers are all safely in the garage, Mateo is safely indoors, and the Mother of Cats and I have been really productive.

Right now, the weaving is a long, long scarf that has some fringe on it. The Mother of Cats washed it last night and it is done for now. Mateo likes to sleep on it, and since the fabric is a little scratchy the Mother of Cats is totally okay with that. She has been talking about cutting it up and sewing little stuffed cats from it, or maybe a sewn bunny, and frankly I don’t care as long as there is catnip involved. A pillow would be kind of nice…

She also has made a lot of progress on her La Prairie sweater. Now she is working on one of the sleeves and is pretty happy with how it is looking.

Looking good, right? This what happens when you get quality cat assistance!

The body of the sweater is a little longer than it should be, but she is happy about that. The sleeves are kind of a problem because she doesn’t want them to be soooo long, so after doing some funky math and checking out what other knitters did, she has shortened up the blocks of solid knitting and now we’ll see how it all works out. She does seem to still be a little stressed about the whole thing. She keeps muttering… I hope I have enough yarn… I hope this won’t be too long… thank heavens there aren’t so many bobbles on the sleeves… I don’t care. I’m a cat. As long as the tuna keeps coming, I’m happy to support any knitting that is going on.

So, that’s it. It has been a pretty good week. The weaving is done, the sweater is moving along, and the Mother of Cats is also halfway through her book about dragons. Someday soon the snow will stop falling, the Mother of Cats will put our lavender back outside, and we will visit the bunnies again in the mornings.

This is my favorite pose after watching Dune: Part Two with the Mother of Cats this week.

This is Hannah, signing off.

Have a good weekend, everyone.

Notes from the Mother of Cats: the book Hannah mentioned is A Day of Fallen Night by Samantha Shannon.

I’m chomping at the bit to get all these lengthy projects finished up so I can knit more Emotional Support Chickens!! Also, I have books lined up from the library that I need to get read before next weekend…

It’s been 25 years. I hardly believe it.

Today is the 25th anniversary of the Columbine High School shooting. I’m reposting what I wrote several years ago right after the shooting at the Pulse nightclub in Orlando, Florida in 2016. Since then, there have been so many other shootings in so many other communities that it is hard to list them all. 25 years of insanity and grief. I wrote this old post (below) in 2016, but on today, the anniversary of that dreadful day that impacted me so 25 years ago, I think that the words are worth re-reading if you care.

My memorial columbine for Columbie High School in my garden last summer. I still come to tears when I think of that day.

We Are One

There are small moments when everything that you know suddenly shifts in its frame and the future becomes something that you never imagined could come. You get a diagnosis, you fall in love, you win the lottery. Such was the moment when, while teaching my third period biology class, I glanced towards the door to see an assistant principal and a counselor standing there motioning for me to come out of the room. Once I was in the hallway with them the questions started: Where are your children? Where does your husband work? It was the day of the Columbine shooting.

Columbine High School was one of the two major high schools in my community. My youngest child had just graduated from the other school, Chatfield Senior High, the previous year. I and my immediate family were safe, but the impact was still dreadful. That night I drove home past police in assault gear standing guard at critical intersections; they had positioned road equipment to block the intersections if the “terrorists” tried to escape.

I was a high school teacher. I knew that there are many dark sides to kids in crisis. I imagine that this is also true of the general population, but I had seen enough in my classroom to know that some young people want to burn the world down, and death is not a deterrent to them; the young can be very volatile and especially vulnerable as they are still becoming stakeholders in society. I was pretty sure that the attack was actually being done by students. At the time it was hard to imagine; now we know better.

The impact on the community was dreadful. Here are some of the standout memories:

Crosses were erected on a hillside and piles of flowers, toys and candles appeared on street corners. Finally, tents were erected over the mounds of offering to protect them from the weather.
Columbines were displayed everywhere in remembrance. To this day there are still Columbine license plates on cars in Colorado.
People huddled together in crowds holding candles against the dark as they mourned together.
My students were terrified to come back to school. Some of them asked if I would take a bullet for them. I will, I told them. I will keep you safe, I promised. Now I know that I lied.
I cried when I realized that the girl on the cover of the Rocky Mountain News (the image above; photo credit to the Rocky Mountain News) was the cousin of one of my students. She was in the library during the shooting. Not all of the others under the table with her survived.
I spun some white cashmere yarn while watching the memorial service on television. I never dyed the yarn so it would match the color of the doves released that day. I still wear the scarf.
During those sad days I woke from a nap as a large helicopter flew low over my house. It was President and Mrs. Clinton on their way to meet with the Columbine parents, and the helicopter was Marine One.

Columbine was closed for quite some time after the shooting, and the students of Columbine HS finished their year at the high school near my house, Chatfield; the school ran split sessions to accommodate the two student populations in one building. Early in the evening right before the Columbine students started at their new school I drove past Chatfield on my way out of the neighborhood, and I saw that Chatfield had been wrapped in a huge ribbon that combined the colors of the two high schools: silver, blue and magenta. There was also a sign that said, “We Are One”, a play on the school district number, R-1. The two schools would become one.

We Are One, I told myself. I turned right and started driving down the hill towards the golf course to the north. Streams of parents were coming up the hill on both sides of the road, clutching each other, walking back towards the high school. They were the parents of the Columbine students, coming to a meeting at the school where their traumatized children would end the year. I continued down the hill and across the bridge with tears streaming down my face.

We Are One.

Today I live in Aurora, Colorado, and everyone knows about the shooting that happened in the theater there. I blogged about my dismay at the huge gun culture (and the money it produces) as evidenced by the unbelievable plethora of gun (shooting) related magazines in the local book store last July. Then last year there was a mass shooting in San Bernardino, California, which is the town where I grew up as a girl. How many mass shootings will I have to deal with in my life? Why should anyone ever have to deal with even one?

Orlando, my heart is broken. I am so very, very sorry that this has happened to you.

We Are One.

The Scleroderma Chronicles: Updates from the Sclero Front

It’s spring here in Colorado. The first baby bunny appeared this week, and the plants in the yard are starting to burst out in green buds. The roses are looking like they are going to do really well this year (except for that one that the bunnies ate…) and there was a huge outbreak of my little bulb flowers in the front garden. I have new cushions for my patio swing, and I sit in the sunshine, reading and drinking my morning latte, every warm morning. On chilly mornings I wrap in a favorite shawl and stay out with the cats as long as I can. The first grasshoppers of the year have arrived for the cats to chase, and the air is filled with birdsong. There are even blue jays!! Good days.

The phlox in the front is looking great!

A couple of day have been so warm I couldn’t stay in the sunshine long and I’ve had to deploy the umbrella shade. Then, the next day, there may be snow. This is spring in Colorado: rapid changes and big temperature swings. The same is true for the barometric pressure; look at what happened this week.

My emotional stability has been a little like the air pressure the last couple of weeks as I’ve gone through a round of testing and doctor’s appointments. I was very upbeat when I went in to get my blood draw to check my iron levels, and the bone density scan last month was just routine. I mean, I’ve been feeling soooo much better: more energy, sleeping better, more mentally alert and even my appetite has improved. Suddenly my gut doesn’t hate me, and I am getting out of the house more. I went to my knitting group for the first time in months! I was positive that my test results would reflect the improvement.

Not so much. After weeks of eating iron-rich foods and downing my iron supplement there was absolutely no change in my test results, and in fact, the test that measures the concentration of hemoglobin in individual red blood cells (MCHC) got worse. Seriously? The only gain was one value of 25.5 that went up to 25.6; still too low. After all that red meat, salmon, iron pills, avocado, and spinach all I got was 0.1 improvement? Kind of disheartening as this means that I have to have some invasive testing to see if I’m bleeding in my stomach (it’s a scleroderma thing), and I don’t think my doctor will put it off much longer. (It’s called watermelon stomach) (fabulous) (of course this is rare) (my zebra self is not happy).

Then the bone density scan results arrived. I have somehow developed a fairly serious case of osteoporosis in a short time span; the report says to start immediate treatment. Then I did some googling and found out that the diuretic that I take can cause osteoporosis, and I absolutely shouldn’t have been taking it because I have a strong family history and I’m kind of high risk. (Of course I am) (I stopped the diuretic) (now my feet are swollen) (my zebra self is crying).

I have to be honest. I was kind of crushed by the bad news that I absolutely did not expect. Then I mentally slapped myself around, did my exercises, potted some lavender plants, and went shopping on Amazon for some cheer-me-up jewelry. Just what I needed to pull myself together. One day at a time, right? I already have more than my share of challenges, so I shouldn’t waste any energy on things that haven’t happened yet. Next week I have an appointment with my internist, and we’ll work out a treatment plan for the osteoporosis and next steps for the anemia. (I took another iron supplement) (my inner zebra has pulled itself together again) (the zebra wants to point out that its lips aren’t as blue as they used to be).

I also pulled out the La Prairie sweater and knit steadily through the sadness until the body came off the needles. Gosh. It looks really nice so far. Something has gone right this week…

Today I woke up to a snow/drizzle mixture that was too unwelcoming for even Mateo to go out on the catio. All my joints hurt, and my muscles weren’t sure if they were going to play nice either. Of course, I had to drive across town to get lung testing and a sit-down appointment with my pulmonologist to go over all my results. I put on my cute Weekender Crew sweater, wore my new “in your face, scleroderma!” jewelry, and headed off for the testing. It hurt to breath as I walked into the building. I convinced myself that it was just the cold air; after all, I feel pretty good, and I was overdue for some good news.

The lung testing specialist is now my friend. We laughed and talked and caught up as she got me ready for testing, and then I breezed through all the parts of the pulmonary function testing and the 6-minute walk test. Every single result was cause for celebration as Stephanie (my technician) became more and more excited with the little graphs and data appearing on the computer screen. “This is better!” she kept saying. By the last test she was practically jumping up and down with excitement. “This is great! This is great! she crowed as she walked me to the exam room to see my pulmonologist. “I’ll let him know that you are here.”

I love this pulmonologist. He is the doctor who first listened to me and picked up on the fact that I had a hole in my heart and pulmonary hypertension. He held my hand and told me I could cry when my interstitial lung disease was first diagnosed. He has always been the doctor who was most honest with me; he told me last year after the tide had turned that they hadn’t been sure I would make it a year. He supported me when I halted the anti-fibrotic drug due to quality-of-life concerns. Today he was all smiles as we went over the results and my exam. My lungs have maintained on the scans. I have regained some lung function. The decision to halt the drug was the right one; there is no obvious sign of fibrosis right now. This is the best possible outcome right now; everything that he hoped for. I was the last patient he saw today, and he was pleased to have such a good one. “Best appointment of the day!” he declared as he walked me out. We were both enclosed in a bubble of joyous happiness as we walked.

I took this picture outside the building.

Outside the clinic the parking lot was almost empty. The cold drizzle was steady, the sky was full of sad lumpy grey clouds, and the gloom of early evening was creeping in. Around the building some ornamental trees were just beginning to open their flower buds, but in the shelter of the courtyard on the south side, the sunniest location, one tree was covered in blooms. Kind of a metaphor for the last couple of weeks. Sit in the sunshine and bloom, no matter what is going on in the world around you.

On the drive home, in my mind, my zebra self was dancing for joy.

Hannah and the CoalBear: We have Lavender!

Hi. I’m Mateo.

Do you see how grown up I look? I turned THREE YEARS OLD last week.

The days here have been nice, and the Mother of Cats has been letting us outside on the catio every single day for a couple of hours. It has been just great. She bought some new plants and put them out for us. The backyard bunny comes out every evening to visit with us. We had a crazy eclipse that made all the birds go to sleep, and then when it was over they woke up again and we were so excited!!!! It was just like two sunrises in one day! Oh, I almost forgot to mention… there are GRASSHOPPERS flying around. Look at how happy we look in the great outside. Isn’t my new lavender plant nice?

Everything was going great until the Mother of Cats discovered that I had been testing the catio wire for weak places. Hey, there is a bunny right out there that absolutely wants to play with me. Well, actually, it is more a matter of me wanting to play with it, but you understand, don’t you? I wasn’t actually going to hurt ~~eat~~ the bunny…

Mateo: when the Mother of Cats found this, I lost my independent catio privileges…

It was kind of hard for her to miss a hole in the fence this big, especially when it is a perfect Mateo-sized gap. Sigh. She’s pretty sure that I was actually outside of the wire trolling for bunnies in the yard, but we’ll never tell. Hannah and I are in total agreement about keeping our mouths shut. I have to give her a few days of my tuna, but it’s totally worth it. We’ve reconciled ourselves to just spending time with the lavender plants in the indoor garden instead of being outside with the new lavender, the grasshoppers, and the birds. And MY BUNNY!!!!

The truth is, Hannah and I kind of fight over the spot right by the lavender plants and seedlings in the indoor garden. It’s a really nice spot, don’t you think? The turtle is nice company, and we still have our lavender so that’s good. Anyway, where I’m going with this is that we are pretty much on HOUSE ARREST and can’t go out unless the Mother of Cats goes with us. She has been weaving, and knitting, and reading, and planting more plants all week, and she hasn’t managed to get anything finished yet. Not one thing. It is kind of embarrassing. We do try to hurry her along so we can go out in the afternoons, but she gets busy with her little hobbies and forgets about how much we need to be outside. To make it worse, did I mention, she still doesn’t have anything done!!!!!

This is what I’m talking about. The Mother of Cats is far enough into the book now that there are dragons. She likes dragons. Has she finished the book yet? No. She isn’t even halfway through yet. She should spend more time out on the deck reading, don’t you think? Then there is the sweater. Do you see how long it is now???? She still isn’t down to the bottom of the body yet, and she is starting to seriously worry about running out of yarn. The weaving is almost done, but is it off the loom yet? No. No, it is not. She’s now considering knitting some lace to attach to the ends of the woven strip (scarf thingy) to make it spiffy. That means that it won’t be done for even longer.

Sigh. Somehow, she needs to get this endless crafting under control…

Still, the Mother of Cats did get us more lavender this week. Lavender is nice. Now we have 4 different kinds growing in the garden and on the deck. I’d really like to check on the progress of the lavender in the gardens, but the stuff on the deck is enough. I guess.

Have a good week, everyone.

Notes from the Mother of Cats: The endless cardigan that I’m knitting is called La Prairie by Joji Locatelli. I’m very close to the bottom of the body. I’m considering leaving it short sleeved…

Look at what these cats have done to the knitted pika I made for them!

Hannah and the CoalBear: Purple Glam Caturday

Hi. We’re Hannah and Mateo (AKA the CoalBear).

We’ve been hanging out with the Mother of Cats today.

The Mother of Cats has been friskier lately. She’s been working with her indoor garden, and went shopping to buy a whole bunch of new flowers to put outside. She did a lot of cooking. She expanded the indoor garden and repotted a bunch of plants.

The indoor garden now has three shelves. The bottom shelf has the miniature rose, some lavender plants, and the seedlings. The middle shelf is mostly African violets and the baby fig trees. The top shelf is mostly orchids, but there are a couple of African violets up there too. We really like the new shelf and extra space, and Mateo especially is walking around among the plants keeping tabs on how they are doing. The Milkweed is growing great! The baby lavender seedlings are growing more leaves. The planted rose seeds: NOTHING!! The Mother of Cats also fixed up the catio some and has been reading outside with her morning coffee with us every morning. Things have been kind of great lately. She took some great photos of us.

Don’t we look great? The Mother of Cats says these are our glam shots.

The Mother of Cats then spoiled everything by going off and leaving us overnight while she visited her son. What is up with that?

While she was gone, she read this book about dragons and made two PICC line covers with yarns that have dragon colors: the green is called Green Dragon and the purple is called Purple Dragon. How come she went playing with dragons and left us alone? Did the dragons get OUR TUNA?

We absolutely were not surprised to see that she knitted with a purple yarn while she was away. Everything has been kind of purple lately.

Her new sweater (which is kind of purple) is getting longer. It is so big it covers her legs and Hannah while she’s knitting on it. Hannah really like the sweater and want one of her own.

The Mother of Cats say that the name of the sweater is La Prairie. What a crazy name, right, but the Mother of Cats likes it because we live right at the edge of the prairie and that is why there are so many wild things in our yard.

Her weaving is getting bigger and now the weft has changed to a purple color. The CoalBear likes to whap at the purple yarn while the Mother of Cats is moving the shuttle back and forth.

So, there seems to be a lot of purple lately. Enough with the purple and the Mother of Cats. It’s time to talk about us, right. After all, it is Caturday!!! Look at how big our bunny is getting in the back yard. You can barely see it in the first shot of us watching it (it hangs out at the bottom of the tree) so the Mother of Cats took a closeup of the bunny. Look! It looks just like the tree! What a clever bunny! Besides the bunnies, there are lots of birds and GRASSHOPPERS outside and it is kind of exciting on the catio now. The Mother of Cats even moved out some plants for us.

So, that’s about all. Guess it is time for us to go pester the Mother of Cats to get up and play with us. She’s been more active lately, but we still like to keep her busy taking care of us. Hannah is pretty sure that we need TUNA because we were left alone one night last week.

But first we are going to grab another nap… Did you notice that our blanket is purple?

This is Hannah and Mateo, signing off.

Happy Caturday, everyone!!

The Scleroderma Chronicles: The FDA, the Supreme Court and Unintended Consequences.

The United States Food & Drug Administration has really been on my mind this last week. Let me set the background: I have a rare, progressive autoimmune disease that at this date has NOT ONE SINGLE DRUG that can directly treat it. Not one. There are drugs that target symptoms and the complications of my disease, systemic sclerosis, but none that can shut the disease down.

Over the last few days two alerts about new treatment developments for systemic sclerosis hit my newsfeed. One of the drugs, Certa Therapeutics’ FT011, is designed to treat chronic fibrosis and was just granted FDA Fast Track status. After a 12-week trial 60% of the systemic sclerosis patients had clinically significant improvement: I suspect that they are talking about lung function here. This is huge! This is the drug that I have been waiting for ever since I quit the anti-fibrotic drug OFEV last summer due to intolerable side effects. Fast track status means I may get this drug in another year or so. THIS IS HUGE, PEOPLE!!!! HUGE!!!

How about a break? Here is my monster orchid 4 years ago today.

Just a couple days after the news about FT011 another news alert, even bigger news, came that Cabaletta Bio’s CABA-201 drug had been granted Orphan Drug status by the FDA. I’m not completely sure, but this seems to be a type of CAR T-cell therapy that would provide an immune system reset: a cure. Did you catch that? A CURE!!!!! The disease that I live with, systemic sclerosis, could be stopped dead in its track if this works. Orphan Drug status provides some financial incentives and helps in bringing the drug to market, but it doesn’t speed up the process like the Fast Track status will for FT011. Still, this is good news arriving all at once. I have a sense that momentum is building as these new, very sophisticated drug treatment strategies come to market based on specific molecular interventions in the patient.

Anyway, none of this going to happen overnight because the FDA approval process is very slow and painstaking. This is the way it needs to be to develop drugs safely. Drugs are first visualized based on knowledge of the regulation and complexities of biological systems. “Oh, that’s a good idea for a drug,” some scientist tells themself, thinking about a regulatory pathway in humans. They follow through on their idea and then see if it works in a specific science-based process that tests the drug in lab, animals and then finally humans to see if it will treat the disease/condition.

Mateo: Hang on, everyone. The Mother of Cats is going to go all science geek now…

For example, one of my drugs is called Letairis. It is designed to treat pulmonary arterial hypertension, and it is an endothelin receptor antagonist. What the heck is that, you ask? As you might, because who in their everyday life would need to know about this stuff, right? Maybe you should skip this part if you are feeling sleepy… You’re still reading? Wow! I’m so impressed and grateful for your trust… Well, anyway, here is the very short version at the Midnight Knitter level of understanding: endothelin is a small protein produced by the cells lining the inside of my blood vessels that causes blood vessels to constrict. The drug that I take, Letairis, is a sneaky molecule that mimics endothelin; it binds to the receptor on the target site and blocks endothelin, keeping it from attaching to the receptor. The drug prevents my blood vessels from constricting and keeps my blood pressure in my lungs low. Yay!

Anyway, some scientist long ago had an idea that maybe blocking the action of endothelin would be a good way to control pulmonary hypertension. This idea was tested in the lab, then on animals, and then if all seemed okay it was tested on a very small group of humans, and then larger groups of humans. Data is collected and analyzed to look for the efficacy of the drug while also identifying all the possible side effects. There is a lot of risk/benefit analysis before the drug is released to market. After that more data is collected to hunt for bad side effects once the drug is being used in this much larger market.

I guess my point is, this is a long, long process with lots of safeguards along the way. The FDA is the agency that provides the scientific guard rails that protect me and every other drug consumer in the US from bad information, harmful drugs, and unscrupulous people who push pseudoscience treatments in order to make a buck. Thank you, FDA, for providing this essential service for me and every other American whether they appreciate it or not. I’m glad that you do this, even if it means I have to wait for my new drug that is slowly working its way through the process to come help me.

Mateo: Now the Mother of Cats is getting political. Watch out everyone!!

Today the United States Supreme Court heard arguments about the abortion drug mifepristone that centered around its approval by the FDA and the decision by that agency to allow it to be delivered by mail. I’m convinced that the issue has been raised solely because this drug is used for abortions, but the arguments brought before the court are suddenly extremely pertinent to me and my own situation.

I’m pretty sure that not one of the justices on the supreme court is qualified to make a judgement about the scientific process used to develop this drug and the analysis that was made about its safety. Just as I wouldn’t allow one of the large pharmaceutical companies to rule on a matter of law, I am alarmed that the courts are now going to second-guess a science-based agency.

I am also extremely concerned about the court deciding whether drugs can be sent to patients through the mail. It has to do with the ancient, mostly forgotten until now, laws on the books about drugs that can be used for abortions or contraception being delivered by mail.

Remember my drug Letairis? I need it to control my life-threatening pulmonary arterial hypertension that was gifted to me by my systemic sclerosis. This drug has a rigorous enrollment process and requires female patients to use two forms of birth control and to take a pregnancy test every month before they can get the next 30-day supply. Each month this drug is delivered to me by overnight express from a pharmacy in another state. This drug can harm an unborn child and may create the need for an abortion. Suddenly the arguments that were made today before the US Supreme Court threaten me and my access to medical care.

I sure hope that Certa’s FT011’s progress on the Fast Track isn’t affected by all of this. An upended FDA approval process could be disastrous for me and a lot of other people waiting for a new drug to arrive to save their butt.

Unintended consequences are a bitch.

Update 3/27/2024: While I was writing this post yesterday, the FDA approved a new drug for pulmonary arterial hypertension (WHO Group 1). The relief and celebration in the online support communities this morning was pretty amazing. This is good news for me, too, as my PAH is in Group 1. Yay science!!

These are a few of my favorite things…

Hannah is taking the week off, but she would like to remind everyone that they should have a good Caturday. Go outside and listen to the birds! Roll around and coat your fur with some nice dust to take the oil off. Look for a bunny. Demand tuna!! Run wild through the house, chase your brother, and sleep in a sunbeam.

I’m still struggling with fatigue, and even though I’ve been trying to eat iron-rich foods, my doctor has decided that I need supplementation. Ugh. I’ve discovered that iron supplements are pretty much evil. Seriously evil! Like, the awful goes on for at least three days after each supplement, but I am starting to feel better. I sleep better. I have more energy. My GI symptoms are starting to calm down. I’m more mentally alert and have an urge to write. Huh. Anemia. There is another post in here somewhere, but not today. Today is about my happy place, the crafting room.

For some reason that I don’t understand, Hannah has decided that I need to spend all my waking hours in the crafting room. She trills and carries on (like, she scratches the woodwork around the doors to make me come running…) until I come back to the room. She is okay if I’m up and moving about, but if I try to read in bed, she intervenes and makes me get up. Okay. Transferring my reading to the craft room… huh… there is lots of sunlight in this room. I have a little loveseat along with the indoor garden, my loom, and a television, so this is actually a good place to hang out while I’m iron-loading. Did I mention that there is a walk-in closet attached to this room with all things crafting inside? Maybe Hannah knows what she’s doing. Over the last week I’ve been gardening and moving things around, and I realized that I really have made a happy place for myself in this room.

Here’s my loveseat with my emotional support chicken, my knitting, and one of my favorite shawls.

Did you want the links for those knitted objects? Just in case you do, here they are. The sweater is La Prairie by Joji Locatelli. The shawl is another Joji creation called Julie’s Wrap, and here is the link for the Emotional Support Chicken.

Do you see all the popcorns on the edging of Julie’s Wrap? It took FOREVER to make all of those, and you would think that I’d learned my lesson, but noooo…. I went ahead and made those popcorn stitches on the La Prairie. Do I regret this choice each time I come to that row on the chart with the popcorns? Why yes, yes I do. And yet…

Look at how cute they are in this cardigan!!!!

If you commit to knitting this sweater, and it is a serious commitment, you might as well commit to the popcorn. I’m really pleased with how this is looking. I’m into the third color of yarn and can’t wait to get to the fourth one. This is going to be a fun light cardigan later on this year.

Back to the happy things. They have pretty much piled up on the table in the room that usually has my fabric cutting station on it. This is what has moved onto it over the last week or two.

That teddy bear is the one that my son gave me in the ICU after my lung biopsy. He’s wearing a hat that I’ve knit for Frayed Knots donation, and the little zebras are ones that my niece sent to me as happy surprises. The Amazon Echo on the table reads my audible books to me while I knit. Happy. This is happy stuff.

Did you notice the green cat tail in the last photo? Here is the knitted cat, in fun spring colors. He’s propping up my current dragon/octopus books and doing a great job at it, too. Those books make me happy! The watercolor painting in the background is one I bought with a girlfriend at an art sale one perfect fall day in Golden, Colorado. My friend died two years ago, but the memory of her and that perfect day lives on in the painting.

Some of the plants from the indoor garden have overflowed onto this table. (Actually, that’s what set off the rearrangement of happy stuff.) This white orchid is a rebloom on a plant from last year (yay!), and in front of it is one of the new little fig trees. To the right, in a little terrarium that MAKES ME HAPPY is an African violet that is blooming its heart out. Above them you can see a bit of the quilt that my cousin made and sold to me a few years ago. Hey, doesn’t this make you happy too?

If you are interested in knitting your own cat, the pattern is Grey Kitten, Calico Cat by Claire Garland. I think that some more things will be joining this assembly on the table. I have some little statues that were put away because… Hannah… that I can now take out and arrange with the flowers. I have some special skeins of yarn that might be fun to display. Maybe I should focus on weaving a little wall hanging on the loom.

Tomorrow it will snow again, but I will be safely indoors with Hannah in the craft room, embracing the popcorn stitch, and enjoying all the little happy things that have been collected in here that are emblematic of friends, family, favorite knits, and happy memories.

There is a little take-home lesson here somewhere. If you are struggling with extreme fatigue, shortness of breath, and everything hurts, just go with it. Make yourself a happy place. Make something beautiful. Hang out with your cat. Embrace the popcorn stitch. Read in the sunshine.

Don’t forget to take your iron supplement, though, no matter how nasty it is!

Hannah wants me to mention that the Chewy tuna fairy visited us yesterday.

p.s. MR, how could I have forgotten to post the picture of the whole quilt? Here it is, a ribbon winner by my wonderful cousin Ruth Ann. Ya’ll, MR is at Downunder with Boodz and sets me straight whenever I wander from the straight and narrow…