The Scleroderma Chronicles: World Scleroderma Day, 2022

Wow, it is that day of the year again. The Niagara Falls will turn teal, Scleroderma organizations around the world are sending out messages and videos, and patients with scleroderma like me are wondering how best to showcase our conditions in a meaningful way. Here in the US the theme is Know Scleroderma. In Australia it is Shine Like a Sunflower.

The whole idea is to educate the public about this rare disease that pretty much flies under the radar to help secure support for patients, funding for research, and awareness of treatment options. Patients are encouraged to tell their stories and to do what they can to expand scleroderma awareness in the public eye.

Well, shoot. I do that all the time! I wrote about World Scleroderma Day last year and I kind of like what I wrote. I talked about what was going on in my illness and the progress that I was making in getting diagnosed and treated for the significant organ damage that was underway in my lungs and heart. I also mentioned the similarities between Covid-19 and systemic sclerosis (the type of scleroderma that I have), and the fact that people like me are still dealing with lockdown. You can read that post here.

So, what has changed in the last year and why am I typing away on my computer once again about World Scleroderma Day? Well… awareness and support are the messages that I’ve been urged to put out, but I’ve been reflecting on what I’ve learned this year and how it might be useful to others. This was a huge year for me… I was diagnosed with pulmonary arterial hypertension, a complication of systemic sclerosis that is developed by about 15% of patients, and I was also diagnosed with interstitial lung disease, another complication of systemic sclerosis that is also developed by about 15% of patients. These serious complications develop so routinely around the 15% mark that there is now a rule of thumb about it in treating patients with systemic sclerosis. There are other conditions that fall into the 15% rule, and I have two more of them: Sjogren’s Disease and diastolic dysfunction.

MacKenzie and I from a posting a few years ago.

So, I am getting a lot of experience in dealing with being sick in a way that is not visible to the public and is not the first thing considered when you head into a doctor’s office seeking help for debilitating symptoms that have no obvious cause. I have been successful this year in becoming an active participant in my own health care and I love my team! Here are my lessons learned:

  1. Physicians tend to diagnose with the most common condition that matches your symptoms. You know, if you are struggling with fatigue, it must be depression or sleep apnea…
  2. They also tell you to stay off the internet.
  3. That works great up to a point. Get onto the internet!!!! Look up the symptoms and treatment options for the condition/illness that your physician is talking about. Do they really fit? Go ahead with the testing that your doctor orders but continue to educate yourself. Get the full text of any testing reports (those are your tests on your body, so do insist… nicely…) Look up crazy words that you don’t understand.
  4. I should include here…DON’T PANIC… about any crazy-ass, scary condition that you run into on the internet that you think you might have. I mean, what could happen? You already are sick, and you won’t get magically worse overnight once you get a name for it. You might, however, get some really helpful treatment that could turn things around for you. That is, if you have that crazy-ass, scary condition that you really, probably, don’t have. DON’T PANIC!!
  5. What if you get test results that say “you are fine” and your doctor pretty much is ready to stop there? Um… go right back to specific test results and symptoms to reset the conversation. You know, “my face is still blue, and the latest CT scan showed that I was losing tissue in my lungs. What other testing can we do to figure out what is going on?” is exactly where you should redirect the conversation.
  6. Make a list of your symptoms and track them in a journal or on a calendar. Document stuff and then contact your health care provider (email works great!) with your concerns and the symptoms that you are noticing. Specific data helps a lot, and the written record makes you more credible and your health provider more accountable.
  7. Do not let a medical health professional dismiss or disparage you. Kick them to the curb and get another. On the other hand, don’t go doctor shopping to get the diagnosis that you want; that is not productive for you or anyone else involved in your daily struggles.
  8. Ask your physicians to communicate with each other and make sure that they include your primary care physician in any messaging.
  9. Remember to be kind to others: your doctors, the nurses, your family, your friends, and yourself.
  10. DON’T PANIC!!! at any time. Remember, feeling powerless and not knowing what is happening is stressful. Learn everything that you can, do everything that you can, and then sleep well at night. Hugs to anyone who finds this meaningful.
More lavender for my garden!

There. Those are the best, most excellent lessons that I learned this year. Today I am out of the serious flare of the winter and feeling pretty darn great. I am on steroids, and my immunosuppressant drug’s dose has been doubled; I feel more like myself than I have in a couple of years. I headed out on errands this afternoon, bought a Starbucks, and signed up for a Tour de Fleece team at my local yarn shop. I bought some new lavender plants that I am going to put into the ground this evening and I am cleaning up the spinning wheel to see if I can get some paco-vicuna spun next month before my steroids get stopped.

I have some really serious conditions that carry a significant risk of a poor outcome. And yet, I feel a little like an imposter as I laugh and interact with other people that I encounter. The man at the drive-through window at Starbucks traded cat photos with me. The lady at the yarn store and I laughed and talked about spinning wheel misbehaviors; are the wheels worse if you name them? Behind the mask, I am still me, the old me; I may have scleroderma, but it doesn’t have me. I am kind of the poster child for what an invisible illness looks like, and that’s why there is this campaign today to “Know Scleroderma.”

Those serious conditions that I mentioned… they are complications of scleroderma, but they happen for other reasons, too. Some are rare, but some are not. Knowing about scleroderma can help with research efforts into these other conditions (sadly, some are now more common because of Covid long haulers), and perhaps the lessons I have learned will help others in their efforts to secure empowerment and medical treatment.

This is World Scleroderma Day.

Shine Like a Sunflower!

The BioGeek Memoirs: Snapdragon

I just love snapdragons! I mean, they have those cute little faces; they do look a little like dragon faces if you use some imagination.

Snapdragon plant in my front yard.

Snapdragons are great plants for me in my gardening efforts. They are really hardy, tolerate dry conditions, and there are new varieties that are small and easy to grow in containers and along the edge of your driveway or garden. The picture above is one that is growing in the margin between my rocked-in area and the driveway; I didn’t plant this guy; it is a volunteer that sprang up from a previous year’s plantings. The original plant was something like this one… a mixture of orange, yellow and pink that changes in the flowers as they age. Pretty cool, huh. I look at the plant and wonder how/why the pigment in the flower is changing over time. BioGeek, right?! It gets even better…

All of these plants are also volunteers from the original parent plant from a couple of years ago.

Do you see all of those colors? They are the result of genetic recombination that happened in the original plant’s flowers when the plant reproduced and created the seeds that rose up to produce this array of colors. Some of the offspring have clear-colored flowers (the yellow and the red), while other have the mixed hues and color-changing characteristics of the parent plant.

Notice, I said parent plant. The funky thing about snapdragons is that they self-pollinate and reproduce on their own with the pollen getting to the stamens within the closed flower without any intervention by outside helpers like wind or insects. In fact, they are so hard to open that only a really heavy insect like a bumblebee can open the flower to get to the nectar inside. As the (big old fat) bumblebee climbs into the flower the little hairs on its body pick up pollen. When the bumblebee flies on to another snapdragon and then climbs into that flower it can carry the pollen in with it to cross-pollinate the new plant with the previous one’s pollen.

Bumblebees started showing up in my garden last week, and I would like to believe that they have been busy with the snapdragons too. If you snap open one of the flowers like I did in the picture above, you can see the pollen-carrying anthers above the opening and then waaaay down at the bottom of the flower is the nectar with the ovary. An industrious bumblebee can push open the flower and then muscle its way in to the bottom. Yay! More flower colors are on the way when there is crossbreeding among my plants. Here’s a great blog posting (Ray Cannon’s Nature Notes) showing a bumblebee taking on a snapdragon.

All this brings me to Mendel and classic genetics. Gregor Mendel (1822-1884) was a monk who had a deep interest in the science. He lived in a time when genetics was very poorly understood, and the basic question was “how are traits transmitted to new generations?” Mendel chose a plant that self-pollinated like a snapdragon (pea plants) and controlled the cross-pollination between parent plants with distinctive characteristics like the color of the flower, the height of the plant, or the color of the pea. He cut away the pollen producing structures in the flowers, used little brushes to carry pollen from one plant to another (taking on the role of the bumblebee in snapdragons), and then put little fabric hats over the flowers to prevent any other pollination from occurring. Tedious, right? Anyway, this work led to the essential understanding in basic genetics that we all now know. Some genes are dominant, and others are recessive. You have two copies of each gene (one from your mom, one from your dad), and the inheritance of which copy you got from each parent is random. Here’s an online tutorial of classic genetics maintained by the Cold Spring Harbor Laboratory.

Good thing that Mendel didn’t choose snapdragons. Snapdragons are a problem for classic genetics because their genes don’t always follow the dominant/recessive inheritance pattern. Instead, some of the colors in snapdragons are both expressed at the same time, and we call that codominant. So…. a red snapdragon crossed with a white snapdragon will produce plants with pink flowers. We now understand how and why that happens, and there are lots of other examples of non-Mendelian genetics like blood type inheritance and tortoiseshell cats. If Mendel had chosen snapdragons to study, he would have floundered around forever, but thanks to him (and pea plants) the first understandings were worked out. Think of how hard that was… no one knew what the genetic material was or had glimpsed a chromosome, but he figured out the process using his pea plant data and some truly exhausting math. Way to go, Mendel!!

Seed pods on my snapdragon plants. Those seeds carry the next generation of snapdragons waiting to grow up next year.

So, when I see my snapdragons, I am transported once again to my biology classroom and those early genetics lessons with students. I am connected to the world of science and the legacy given to me by Mendel and others. Why are my flowers a mixture of pink, yellow, and orange? Hmmm…. maybe there is more than one pigment gene at work at the same time, and the amount of pigment being produced is changed as the plant ages? Is this some funky combination of red and yellow genes? I kind of think so, since I now have plants with clear red and yellow flowers: they must have two copies of either the red or yellow gene. Is there another gene kicking in to modulate the amount of pigment produced as the flower ages? What about the pigments that I can’t see, but are there for the bees to see? This is so cool, and I just love snapdragons!!!!

This isn’t just a garden, but a genetics experiment that I’ve been running for a few years now.

Yay, science!

Hannah and the CoalBear: Caturday, 6/25/22

Hi. CoalBear here.

I’ve been entertaining the Mother of Cats all day because, frankly, she is in a slump.

Well, now that I think of it, she should be in a slump. The only day this week she was frisky was Tuesday and look at what she did to me!!

She took me to the vet!!!

People, this was the most horrible thing that has ever happened to me. I got stuffed into the carrying crate and before I knew it, I was in the car. We ended up in a strange building with other people and DOGS and I kept crying, and the Mother of Cats just ignored me and took me to a little room where I had to COME OUT OF THE CRATE!!!!! I got weighed, physically cathandled by a strange lady, and then there were the SHOTS that I absolutely did not deserve because I am the best boy ever. You want to hear the worst thing about all of this…. Hannah exercised her right to refuse and didn’t have to go the vet. I think that she was laughing when we got back home again.

Okay, back to the week. The Mother of Cats is taking lots and lots of new pills now and parts of her don’t feel good because of the side effects (let me tell you about the side effects of those SHOTS!) so I am doing my best to be cute.

She finished her little quilt and hung it up on the wall behind her knitting chair.

The Mother of Cats used clear plastic push pins to secure the tops and corners of the quilt. I have been pulling the pins out of the bottom of the quilt and taking them upstairs to play with. I left both of them on the bathroom floor where she would be sure to find them this morning so she can put them back into the quilt again. Wasn’t that good of me?

I’ve also been trying to help her with her knitting, but she seems to be in a slump. She isn’t knitting much, and the stuff she has going is… boring.

Do you see how boring this knitting is? The pink blob is a sweater… maybe. The blue is going to be a pair of socks someday, and that pastel smish of funny colors will someday be a hat. Where are the cat toys? Hello? How can I be cute and entertaining if I don’t have all the toys in the world…

Although, I think that I am pretty darn cute with the toys I have now!!!

Well, I guess that is all for now. It is almost time for the baby bunny to come out in the back yard. Show time!

Mateo the CoalBear

Notes from the Mother of Cats:

  • I did get Hannah into the crate at least three times, but she was too strong for me and managed to push her way back out before I could get it zipped closed. She has another appointment next month and I’ll try some new strategies.
  • I’m in the middle of a big drug push to get my lung disease under control; I am breathing much, much better and I have more energy by far than I did a couple of months ago. The downside is… side effects. My doctors are running frequent blood tests to monitor my progress, adding more drugs to control symptoms that are concerning, and so far, things are going well, but I am pretty much homebound with pain, blurred vision, and dizziness. Two more weeks of the steroid push to go and then I start to get tapered off. Yay! I’m dealing with a lot of tendon pain as my immunosuppressant dose is doubled, but that has happened before and I’m hopeful that there is an end in sight.
  • What type of side effects, you ask? I gained 12 pounds in two days and my blood sugar soared into the high 100s. Opps.
  • I am getting out into the garden a little and there is a new rose bush waiting for me to plant it. Someday soon, little guy.

The pictures above are my morning pills, the braces that I now am back in because of tendon pain, and my new, beautiful rose. The name of the rose is… Easy Does It!

Just the rose that I needed for the week.

Thoughts on “Lessons in Chemistry” while sitting in my Garden

The monsoon has arrived in Colorado! This monsoon is not bringing any rain my way, but it is carrying in cooler air and gentle breezes through the day. Suddenly I am spending lots of time outside. I’ve worked in the gardens every single evening for a couple of hours and the gardens are actually starting to look like… gardens! Okay, I have to admit, there is still lots of work to get done, but I’m so happy to see tidy weeded gardens with lovely rose bushes without a throng of weeds around them.

In the late afternoons, when it is still a little too sunny to work in the gardens, but nice for sitting outside because my swinging garden seat is in the shade, I move out to read with the wildlife. Look at the great pictures I got this week!

My yard is a playground for a group of juvenile squirrels who are always entertaining. There are huge swallowtail butterflies and tiny birds in the yard, but those guys haven’t stopped long enough for me to get a photo yet. The robin is a regular at my little birdbath, and the first bumblebees of the year showed up to sample some of my flowers. My favorite rose bush, the Princess Alexandra of Kent, now has 15 blooms going. My back gardens are filled with new plantings, and the lavender and yarrow are just a few days away from the first blooms. I’m really enjoying my time outside reading, and then I think about the book while I pull weeds and put the gardens into order.

Lessons in Chemistry: A Novel by Bonnie Garmus has been on my mind a lot this last week. The story is of Elizabeth Zott, an intrepid individualist woman who is a scientist by nature and calling, challenged by her gender and the time in which she lived.

I just love the Elizabeth Zott character. I understand and identify with her so much. Elizabeth is a chemist/scientist trying to do research into an original area of chemistry that intersects with biology. Did I mention that it is the 50s? Oh. Elizabeth has a lot of obstacles to overcome: women are expected to be homemakers, and misogyny and gender stereotypes are everywhere. Other women gossip about her and sabotage her. Men steal her work and take credit for it. She loses her job and ends up doing a cooking show on television.

Where she teaches cooking as lessons in chemistry to produce the best, most wonderful dishes ever. Women love her show, take lecture notes through the programs, cook the meals, and learn to think differently about their abilities, their role in society, and their individual worth. The book is wonderful. The book is about keeping an open mind, questioning everything, collecting data, and thinking for oneself. Also, there is a dog who is a major character in the story and who has a wonderful voice and viewpoint of his own.

So why does this book connect so much to me? Well… I grew up in the 50s and 60s. I entered college as a chemistry major (but once I discovered molecular biology, which is kind of biological chemistry, I was gone…). We kind of forget how things used to be for women, but I do remember how things were.

A small list of events from that time:

  • The men talking out front after church each Sunday sure were critical of women drivers. Like, women shouldn’t be allowed to drive. They were serious!
  • A woman at my church had cancer. Her husband, who was in charge of her health care, had that information concealed from her.
  • My high school counselor told me that I would make a great nurse because I was so smart, I could support doctors in making their diagnoses, helping them with their careers. I decided that maybe I should be a doctor…
  • My chemistry advisor in college told me that women were just taking away a slot from a man and that the education was wasted on them because they would just become housewives. Umm… I had just made the Dean’s List…
  • I interviewed for my first research lab job after college. I had to answer a lot of questions about my husband, his career plans, and whether we would be having another child. I think that I got the job because my husband needed me to support the family while he finished college.
  • Working at my lab bench late one afternoon I overheard the head of the lab discussing the research of one of the postdoctoral fellows, a woman. They were denigrating her work while, at the same time, talking about how they could clean it up for publishing. They published her research under their own names later that year.

Well, that’s enough to give you a glimpse of what it was like for women as they struggled for equal opportunities, standards, and pay. We’ve come a long way, but the fight goes on. What I especially loved about science is that it helped level the playing field and encouraged independent, out-of-the box thinking.

Which brings me back to the book. Elizabeth reads to the dog and teaches him hundreds of words. Elizabeth allows her daughter to read just about anything that she can get her hands on (a reading philosophy that I also benefited from), and teaches her cooking show viewers to take a few minutes to savor their accomplishments. Elizabeth rows with men. Elizabeth moves through the world, astonishingly self-confident, striving always to extend the envelope of her knowledge, fearlessly challenging the status quo, viewing everything through the lens of science.

I kind of think that Elizabeth Zott is my hero!

And science. Always, science.

Cooking may be chemistry, but biology is life.

This is me, sitting in my garden, thinking about life.

The BioGeek Memoirs: American Robin

I’m sitting out in my back yard this late afternoon listening to the songs of robins. What do they sound like, you ask? Check out this link with American robins singing.

I have a lot of robins in the yard this year. I see them on the fence, running across the front yard, pulling up insects and worms from the lawn after I mow and water in the evenings, and splashing in the birdbath in my back yard.

I just love the robins! They are kind of intrepid, don’t you think? Lots of birds hop around, but no, not robins: robins are runners! I watch them run across the road almost every morning while I make my latte, and then across the lawn with a “you bunnies had better get out of my way” attitude. I mean, they are running chests out and leading with their beaks! What could be a better way to start the morning? Be like a robin, tackle each morning at a run! Be sure you get your latte first, however…

I almost never see robins over the winter, but they are kind of early arrivers in the spring. More than once, on a March snowy day, I have walked out to the car to find half a dozen male robins in the trees, heedless of any snow on the branches, carrying on and singing like crazy as they compete with the other birds. These first groups of robins are called waves, and they really are a first sign of spring.

Robins do migrate south in the winter and return to the north in the spring, but evidently it isn’t a strict north/south pattern. When I was back in the biology classroom the students and I would be on the watch for the first signs of spring in a number of categories, and the sign that I like the most was the first robin seen. The first robin of spring was a big deal for the students, and we were really on the watch starting about the first week of March each year. Students started carrying cameras with them hoping to grab a great photo.

Toy robin given to me by a student to use in the classroom. The first robin of spring!!

What? You can report the first robin seen somewhere? Yep. We made our reports to Journey North, which is an educational website where first sighting of spring in a number of categories are reported by students across the nation. Here’s the page for the American robins, and you can see the mapped data with animation here. As you might guess, the first robins are seen towards the south of the US, but then as the season progresses, they are seen further and further north. What I really love about this is that the data shows (and this is data from students all over the nation!) is that robin migration isn’t simple and clear because they tend to spread out to find food and don’t always move south. In the spring, the food becomes available as the sunlight, longer days, and earth warming moves north, and the robins follow the food.

Back to my robins in the yard this year. The fledglings left the nest this week and they have been hanging out in my yard with the bunnies and squirrels.

These little guys are hanging out hoping that one of their parents will come feed them.

I tried to snap a shot of the male feeding them, but there was so much baby-bird food-begging action and wing flapping I couldn’t get a good one before the parent flew off. Still, how cool is this? They are not all that afraid of me and seem to like hanging out with the occasional baby bunny in that side of the yard.

This summer’s baby bunny is doing great!

I have bunnies again this year! The cats are beside themselves!

I half-jokingly told a neighbor last night that I might let the backyard become a meadow. The grass is now taller than the baby bunnies and I am seeing more wildlife than usual. I’m torn, because I am making good progress weeding out my gardens this year and if I let the grass get too long, I will need some type of special mower if I change my mind down the road. What if the baby bunnies need more food? It is tempting…

Nope. As soon as I post this the mower is coming out. Run bunnies, and fledgling robins, you had better take to the wing.

Hannah and the CoalBear: GoldenFern Report

Hi. I’m Hannah. This has been a really special week. Let’s get to the most important event of the week first:

It was the anniversary of the day I came to live with the Mother of Cats this week!!! It has been two whole years since I arrived here more than a little upset. I mean, I had gone to another home and they didn’t like me and they took me back to the shelter! They said something about crying all night… I wouldn’t let the Mother of Cats out of my sight, slept on her bed plastered right against her so she couldn’t get away from me, followed her everywhere, and the rest is history. Now I am so essential to her life she wouldn’t know what to do without me.

For example, I worked really hard all week helping her with her new sweater. We got the second sleeve done early in the week (I helped her manage all of the loose ends by chasing and chomping on them whenever possible…) and then she had the bright idea of adding an I-cord edging to the bottom of the body of the sweater.

I got a great nap in while she was applying the edging below the ribbing of the sweater’s body.

It took her almost two hours to add the edging to the bottom of the body of the sweater, and then it was time for cookies and some excitement. CoalBear and I chased the laser light for a while, got some more cookies, and watched for moths while she finished off all of the ends, and then, in the middle of the night she tried on the sweater!

It fits!! I think that the Mother of Cats is kind of silly when she gets so excited, but I love her anyway.

The next day we misted and steamed the sweater to block it and left it out to dry.

Here is the sweater blocking in the closet where I can’t sleep on it. Why does the Mother of Cats do these things?

Can you see that the colorwork of the sleeve is a little more tightly knit than the colorwork on the body? That’s because the Mother of Cats used a bigger sized needle on the body so that the gauge would stay the same (Is gauge like tuna? If so, I wonder if I can have some for dinner?), but when she did the sleeve she didn’t go up a needle size so the sleeve snugged in a little and it fits her wrist just right. That was my idea: pretty smart, don’t you think? The I-cord added to the edging of the body gave it a little more weight and makes the sweater hang nicely. The Mother of Cats is really happy with her Goldenfern sweater. See what a great job I’m doing helping her? She never would have had the patience to add that edging to the sweater if I hadn’t been there for purring support!

Right now, the CoalBear and I are hanging out in front of the air conditioner.

I’m so glad that the Mother of Cats brought me home to live with her. Do you see that she gives me all the boxes that I want and a little playmate buddy too!!

See you next week!

Hannah

Notes from the Mother of Cats:

I put a lot of thought into this sweater. Here is some of my thought process:

  • The designer used a single ply yarn in her original design so I felt empowered to do the same. I found yarns for the contrast colors in my stash, and all of them are also single ply.
  • The lifted increases in the body are almost impossible to find! I could not be happier with the way they came out.
  • The designer suggested going up two needle sizes for the colorwork portions to maintain gauge; since my yarns were thin I settle with going up one needle size for the body.
  • I went back to the MC for the ribbing at the bottom of the sweater which gave the ferns a “floating” look.
  • I stayed with the needle size used for the sleeve when I got to the colorwork on the cuffs as I wanted a snugger fit.
  • I like the look of I-cord bind off at my wrists so I did a three stitch I-cord (instead of 2 stitch) in the MC to make them it stand out.
  • I then picked up stitches along the bound off ribbing at the bottom of the body and did a 3 stitch I-cord bind off along the bottom of the sweater. This I-cord doesn’t really stand out, but rather blends right in with the ribbing and provides a clean edge that has a little more weight.
  • My Ravelry notes are here.

Hannah and the CoalBear: It’s Caturday Again

Hi. I’m the CoalBear (AKA Mateo)

It is sooooo hot today. It is almost 100 degrees outside, and Hannah and I are staying cool in the house. The Mother of Cats has all the windows closed and we’re too hot to look out the windows anyway. Do you notice that the Mother of Cats has been brushing out all of my downy fur? I used to have a huge ruff around my neck, and now it is almost all gone. I look a whole size smaller now. I don’t like getting brushed, but today I guess I am glad that she did it. She also cuts my nails off and I will never get used to that!!

The Mother of Cats has been knitting away on her sweater this week and look at how far she’s gotten! She is done with the first sleeve and halfway down the second one already! She has also been sewing on the quilt with Hannah.

The quilt is coming right along and should be done in just a few more days. The Mother of Cats can’t wait to get it done. Hannah kind of hopes that she is going to get to keep it for her new bed, but I think that the Mother of Cats is planning to hang it up on the wall behind her knitting chair. I ripped the old quilt down a couple of days ago (Hey! There was a moth!) and she didn’t even bother to hang it back up again. Okay, the old quilt was a Christmas themed one, so maybe she’s ready to put it away now anyway. I’m such a good boy; see how I did her a big favor?

A scary man came this week and messed around with the Mother of Cat’s oxygen machine. When he left there was new stuff left behind including this new green bottle with a snazzy carrying bag. Now the Mother of Cats has oxygen she can take with her when she goes out on errands, but mostly she stays home with us because we are so cute! She has been working on her gardens this week and they are starting to look pretty good. The first rose bloomed this week which made her really happy.

It’s her first English rose of the year!
Well, that all I have. It’s still stinking hot outside and all of the animals are asleep, so I am going to take a little nap too.

See you next week!

>^..^> CoalBear

Notes from the Mother of Cats

  • The sweater is GoldenFern by Jennifer Steingass. Hopefully I will have it done in another week or so. I’m really anxious to start another sweater but so far I’m sticking to getting this one done first.
  • I know that isn’t a good shot of the quilt, but hopefully I will have a nice picture of the completed quilt to show off next week. Hanging on the wall, where I hope it remains as long as no moths land on it. 🙂
I’m listening to this audiobook while I quilt and I just am loving it!!
  • Not only did I get oxygen-to-go this week, but I also got my injections of Evusheld, which is a combination of two monoclonal antibodies that will give me protection from Covid for at least 6 months. This is huge piece of mind for me since my doctors are dialing up my immunosuppression drug dose this month and have started me on a new immunosuppressant drug at the same time. Yay, Evusheld! With the higher dose of drugs, I won’t be able to make many antibodies of my own, so I’m glad to have the Evusheld antibodies.
  • That rose is Princess Alexandra of Kent, and it is pretty much my favorite rose in the garden right now.
  • Hannah and Mateo don’t know it but they are heading to the vet for their vaccinations and checkups next week. Sad cat day is on the way…

The BioGeek Memoirs: Sunflower

Okay, I need to be complete upfront about this: this is a crossover post. It is going to be a total amalgamation of the Scleroderma Chronicles and The BioGeek Memoirs because I just couldn’t come up with anyway to make them separate posts. Hey, I’m a biogeek with scleroderma. It was bound to happen eventually…

So, let’s get this ball rolling by talking about bean plants. That makes a lot of sense, right? When I was a biology teacher struggling to make plants interesting and to help students understand experimental design, I came up with the genius idea of letting the students design an experiment looking at the effect of fertilizer concentration on the growth of bean plants. The students had solutions with different concentrations of Miracle Gro fertilizer available to them, and then they had to struggle with planting and growing 6 bean plants while holding all the other variables constant. The plants grew, the students measured their growth, and then they charted the growth to make decisions about the best fertilizer amount.

I had the hot idea of using an Excel spreadsheet to display the student data to the whole class. That worked great! I then combined the data from all 5 classes together and… it was a huge mess. The plants were all different heights depending on which class was collecting the data. The students weren’t making any errors; the bean plants were raising and lowering their leaves each day in circadian rhythm. Depending on the time of day, the plants were a different height. Oh. Plants can move!

Sunflowers have been on my mind a lot recently. Beautiful sunflowers, whose faces turn throughout the day to follow the sun. My cousin grew enormous sunflowers one year that towered over the other plants in the garden. Sunflowers are the symbol of Ukraine. The sweater that I am knitting right now is in the colors of a field of sunflowers with their faces in the sun.

Those aren’t sunflowers, but the colors remind me of all the “Support Ukraine” knitting that is going on right now.

There are enormous fields of sunflowers near the airport in Denver that are just spectacular in the late summer. Early one morning in late August,2014, I drove past them on my way to my first appointment with a rheumatologist; my primary care physician had referred me to a specialist after some concerning bloodwork results. I was pretty sure that this morning was going to be a turning point in my life, and I was nervous and kind of fighting off tears. Behind me the rising sun poured light onto the glowing faces of sunflowers ahead of me as far as I could see; the sight was just thrilling, and I settled right down. An hour later the rheumatologist explained that I had limited systemic sclerosis (a form of scleroderma) and Sjogren’s disease. I was prescribed medication, sent for more testing, and told to stay off the internet. I looked for the sunflowers as I drove home that afternoon, but I couldn’t see them; the fields were too far from me as I drove east. Still, just knowing they were there sort of helped. Sunflowers. They were kind of a symbol of hope and the promise that I could handle anything.

Are you ready for this? The sunflower has been chosen as a symbol for scleroderma by Scleroderma Australia. Shine like a Sunflower is their campaign this June to bring scleroderma into the light of awareness.

Just like that the sunflower became an international symbol for scleroderma. I swiped this shirt image off of Amazon.

Why a sunflower? Well, like sunflowers, we scleroderma people follow the sun. Strong sunlight is actually a problem, but the warmth… bring on the warmth! For the last few weeks, I have been recovering from surgery and waiting for my biopsy results. I have been sitting outside on my deck out of the direct sun, soaking up the heat and light. Day by day, I have been improving and no longer need daytime oxygen support. My cardiologist has restarted the medication that was halted while I was in the hospital, and it hasn’t even caused a bump in my recovery. Heat and sunlight are really making a difference.

My biopsy results arrived on the first day of June. I have developed a type of interstitial lung disease that presents as hypersensitivity pneumonia. I also have the characteristics of what the report called a vascular/collagen autoimmune disease, which is pretty much a descriptor for scleroderma. Yep. What my pulmonologist prepared me for. This is interstitial lung disease associated with system sclerosis (SSc-ILD) and I am going to get started on an increased dosage of immunosuppressants and a new drug to prevent scarring in my lungs called OFEV. This drug is really new; it has been developed in the years since my diagnosis, and now it is here just when I need it.

June is Scleroderma Awareness Month. Here in the US the theme of the campaign is Know Scleroderma. Oh, I know scleroderma, and so do some of you through my blog. Let’s put scleroderma aside for the time being and go back to sunflowers. And science. Remember that this post started with a little story about doing a science experiment with bean plants and my students? As simple as that was in my classroom, the heart of that process, curiosity, scientific experimentation, and data manipulation, is serving me well now. Ironically, new therapies and treatment approaches are being developed because of the lung scarring caused by Covid-19. Science. It rocks!

Today I planted these sunflowers along my side fence.

This afternoon I am once again outside in the warmth and light, knitting on my new sweater in the colors of sunflowers against the sky, admiring my beautiful newly planted sunflowers. They have their little faces angled to the southwest, following the sun as it starts to dip towards the Rocky Mountains.

Beautiful, tough, follow-the-sun sunflowers, reminding me to also follow the sun and to shine when I can. They remain a symbol of hope and a promise that I can handle anything.

Shine like a Sunflower.

June is Scleroderma Awareness Month. You can learn more about scleroderma at these links.

Month’s End Report: May 2022

This month passed in a hurry. I spent most of a week in the hospital, and then the rest of the month recovering from the surgery. I haven’t been exactly frisky for the whole month, but I have been making some progress on several projects.

Hannah: The Mother of Cats has been spending lots of quality time with us!

Doesn’t Hannah look pleased with her box? The house is pretty much full of boxes at the moment as I have been making use of all the shopping services that cropped up during the height of the pandemic. I’m getting everything that I need with little effort and Hannah and Mateo are having the best time ever. From their prospective it has been a really great month!

Knitting

I worked on a sweater and community knitting this month. I really pushed and got the body of my Goldenfern sweater done early in the month and then immediately lost it on sleeve island. Poor sweater. It languished for the rest of the month in its knitting tub while I knitted chemo hat after chemo hat with a few PICC line covers thrown in for variety.

I have lots of brightly colored yarn so that’s what’s getting knitted right now!

I know that this is the end of month report for May, but I want to acknowledge that now that we are in a new month, I have pulled myself together and taken that sweater off of sleeve island. I made some good progress over the last couple of days, and I finally got to the colorwork section of the sleeve today.

I’m knitting the ferns onto the bottom of the first sleeve now.

I also made a couple of more passes through the yarn stash culling out yarn that I will never use and throwing out scraps. (So hard to do; I deserve a gold star!!) Altogether, I knit 6 chemo hats this month (Barley Light by Tin Can Knits), 5 PICC line covers, and used up or removed 38 skeins of yarn from the stash. I think that I deserve more than one gold star for the destash efforts this month… I am kind of thinking that I will get more than 100 skeins out of the stash, and to be truthful, things are looking a lot more tidy in the stash room.

Garden

Everything is growing like crazy now. The roses all made it through the late season snowstorm and there are buds everywhere but very few blooms. The snapdragons, however, are blooming their little flower hearts out.

All of these snapdragons are volunteers growing from last year’s plants. Look at all of those colors; they are the descendants of pink snapdragons that were originally planted a couple of years ago. Also, those flowers are NOT in a flowerbed where they belong!
This plant is my favorite in the bunch. It is growing with reckless abandon in the rocks along the driveway.

With absolutely no effort on my part these snapdragons have spread through the front gardens (and rocked landscaping…) and have brought lots of early color in reds, oranges, pinks and yellows. There is a BioGeek story here, but I will save it for another day. 🙂

Books

I managed to read 5 books in May. Not great, considering that I was a slug for most of the month, but I’m still on track to make my Goodreads challenge goal of 50 books this year.

I’m reading the most amazing book right now.

I can’t read this book fast enough!

I read A Visit from the Goon Squad, so I had some idea of what I was getting into with this book. The book is organized like a series of short stories about people who are connected to each other. There are a lot of names flying past, and there are also embedded themes within the stories, so there is a lot to keep track of. I am creating a flow chart showing the linkages and themes as I read which is helping me immensely. How I long for a book group!

So, here’s the simple backbone of the book: what if there was an electronic, open forum vehicle that let you store all of your memories? Think of this like Facebook on steroids where it is open to the world and people can access and search other people and memories. What would such a thing do to us; what would we lose, and what would we gain?

The people and themes that I am meeting as I read the book are engaging and I’m really enjoying myself. Also, I am going to need some really big chart paper to map out all of the interconnections the way things are going as I read.

Have a good weekend, everyone!

Hannah and the CoalBear: Happy Caturday

Hi. I’m Matao.

I’ve been helping the Mother of Cats knit lots and lots of chemo hats.

This was a great week! The weather has been nice and sunny and the Mother of Cats has been sitting out on her deck listening to her audiobook while she knits. Hannah and I have been watching all the stuff in the yard through the windows.

There is a squirrel with the world’s fluffiest tail that hangs out in the back yard. We love the squirrel!!
But the best watching ever is out the back window…
Because there is a baby bunny hanging out in the back yard for us to watch!!
and it is the cutest little bunny ever!!

Happy Caturday, everyone!

I have to get back to helping the Mother of Cats knit these hats!!

Notes from the Mother of Cats:

I’ve been reading the best book ever while knitting outside and watching the wildlife in the back yard. One of the main characters is an octopus, and I just fell in love with him right away. I seriously, seriously recommend this book!

This was a perfect book to listen to as an audiobook. Engaging characters, well told story, happy ending.

Years ago, another biology teacher told me about an octopus that would break out of his tank to go snack on crayfish from another tank in the lab. Yep. They gave been known to do this. Very smart, able to squish through very small openings, octopuses are kind of the stuff of legend. In this book, the octopus is also a wanderer with an incredible memory who becomes a pivotal character in the lives of the people who know him. I wanted the book to go on and now I am on the hunt for another easy to listen to books to keep me company while knitting outside with the wildlife.