The Scleroderma Chronicles: Thoughts on the Night of the Blue Supermoon…

Did you look at the moon tonight? It is just huge, shining in the night like it knows that it is something special. Well, it is. This is the Blue Supermoon of 2023, my friends. Not to be seen again for 14 years. Just the sight of it makes me feel happy.

This is also the anniversary of the day that I was told that I had systemic sclerosis and Sjogren’s Disease. Actually, it is 9 years and one day since I drove to my first rheumatologist appointment; I was a little emotional that morning as I passed fields of beautiful sunflowers, their faces glowing in the light of the morning sun rising behind me. You’d think that the date would be kind of a bummer, but nope. As it turns out, there are lots of things that are making me feel happy at the moment.

Do you see that black bag with my purse and cane? That is my portable oxygen concentrator!

That’s right, after languishing for 18 months on the waiting list, my name came up for the portable oxygen concentrator that I have been desperately needing. Look at that baby!!! It only weighs 5 pounds, it works great, I can adjust the level of flow on the fly, it can charge in the car, and it is exactly what I need. Yay!!! I got it yesterday on the exact 9-year anniversary of my diagnosis.

So happy, feeling absolutely empowered, I headed to the yarn store after picking up the concentrator. Time to take this baby for a spin, right? I have been struggling for months to make a decision about the yarn for the La Prairie cardigan that I want to knit next. I bought a kit of yarn to make the cardigan, but I’m not happy with it. I needed a new skein to go into the mix…

The yarn picture on the left is the original kit. The one on the right is the new variation that I’m not completely happy with. Feeling hopeful and more than a little determined, I sat on the floor in front of the most likely candidate yarns and, rocking my new O2 concentrator, holding up my phone with the yarns on the screen, I kept looking at different ideas for the fade…

Bingo! I found my yarn!

Winner, winner, chicken dinner! I suddenly realized that the Stitch Together yarn (second from the top) was exactly what I was looking for. There it is. I asked others in the store what they thought, and the consensus was that I had nailed down my fade. Yay!!! Finding that yarn made me happy.

So, I also bought the special edition Babe set from Spun Right Round.

I’m going to make that Barbie pink yarn into hats for the community knitting group that I knit for because… wait for it… the color makes me happy!! I had one of the original Barbie dolls, and just the thought of Barbie makes me… happy!

On the way home from the yarn store, still sucking down oxygen in the car and feeling pretty good, I stopped at the grocery store to buy some tiramisu because I was absolutely having a tiramisu kind of day, and there at the front of the store were sunflowers. You know, it is the end of August, and it is sunflower time. Shine like a sunflower!!

Pretty good looking, huh. Sunflowers are used as a symbol of scleroderma hope in some parts of the world (Hello, Australia! Talking to you!), and you know I bought these too.

By the time I got home I was tallying up all of the things that made me happy. The leaves are starting to change on the trees in town, and the ornamental grasses are covered with rich golden plumes atop bright green stems. That makes me happy. Pumpkin spice is back at Starbucks. The kittens loved the new toys that I bought them. I ordered new clothes this week that fit great even though they are a smaller size than usual. I found new shoes to wear that are really helping a lot. Happy. I am happy.

The shoes are shaped like walking boots on the bottom, but inside there is great arch support and a cushy insole. I am walking now with much less pain. Did you notice the purple detailing and the silver loops for the laces? Happy. These are happy shoes.

Once home, I headed outside to the catio with my yarn, the tiramisu, and a cup of coffee from my new Keurig machine (yep… happy), and as I set the plate and coffee cup on the table, a pair of adult cottontail rabbits raced around the corner of the deck and zoomed under my side gate. Looks like I will be having baby bunnies again. I am happy.

Nine years ago, I asked that first rheumatologist what my life would be like in five years time. He refused to answer, and it was my first clue that I might be in some trouble here. 18 months ago, my pulmonologist told me it was okay to cry when the first lung scans showed serious interstitial lung disease. One year ago, my pulmonologist told me that they were very worried about me after my lung biopsy… nothing was working, and he wasn’t sure I’d make it. Last month, the technician who did my latest pulmonary function test told me that I was too bad to walk any longer without portable oxygen. I came home, looked at the bottles that are too heavy for me to carry, and cried.

Tonight, under the blue supermoon, with sunflowers on my table, I am happy. One month later, I have my portable oxygen. 18 months later, my lung disease appears to be stable. 9 years later, I’m still here, rolling with the punches of new complications, facing down the monster, and finding ways to shine.

I am happy.

Shine on supermoon, shine on.

The Saturday Update: Week 13, 2021

Spring has arrived here in my little part of the world. The weather is balmy, the sky is endless blue, and I hear birdsong every morning now. Yay! I headed off the the nursery on Friday and bought some nice bedding plants that can withstand a spring snowstorm or two and planted them that afternoon. Look at what else I found!

So cool, right? My front rose garden is covered with these little white flowers and the occasional crocus as pops of color. Some of my perennials are putting out new growth and I am feeling pretty good about getting the outside gardens going again. I think that all of the rose bushes made it through the winter, but in another few weeks I’ll know for sure. Please, no big snow storms, Mother Nature!!

Knitting

I kind of set a goal for myself early in the year to knit a pair of socks each month, so late last week I went into knitting overdrive and got March’s pair of socks finished. They are nothing fancy, but they are done!

These guys were knit with Classic Sock yarn from Spun Right Round in the colorway “Hellbent”. This yarn is a 4-ply hard twist merino yarn that is advertised as perfect for socks, so I took a chance and cast on. It’s a knitting experiment! If they hold up to wear okay I have some more yarn like this in the stash just waiting to join them in the sock drawer…

Once the socks were done I went back to knitting the Goldwing sweater and made some progress. I have now finished the body and am working my way down the first sleeve; Hannah has been tons of help with the sleeve knitting… NOT! I have to flip the sweater around while working on the sleeve and that makes the knitting look like a cat toy to her. Still, we are making good progress.

Books

Have you ever found yourself reading books that had similar themes? Without meaning to I have gone down the rabbit hole reading books about… artificial intelligence and the personhood of human-like constructs.

These books ask the question, “What is personhood?” while taking you on adventures that are engaging and action-packed while forcing you to consider why some individuals have lesser rights than others. In A Closed and Common Orbit the artificial intelligence of a ship (Lovelace) moves into a robot body after a catastrophic failure and reboot that makes her continued presence on the ship uncomfortable. It’s a rocky, and illegal, transition but over time Lovelace, with the help of her irrepressible engineer/friend Pepper, is able to move into a life that is hers alone.

Then there is Murderbot. Oh, dear. I am currently consumed with Murderbot. Imagine being a highly skilled and intelligent construct of organic and machine parts that is designed to provide sophisticated services to clients who hire their services from security corporations. Known as SecUnits, these constructs are lethal bodyguard units capable of multiple types of responses; they can conduct electronic warfare and control other units (like drones) while shooting their way out of any ambush or hazard; retrieval and secure safe passage for human clients is their specialty. They are lethal units, valuable corporate possessions, and their compliance with corporate priorities and directives is controlled by implanted governors that “punish” any failure by the SecUnit. They are “things” and have no rights. Except… what if a SecUnit is able to hack the governor and can begin to make decisions for itself? Meet the hero of The Murderbot Diaries as it goes rogue and begins to find its own way in the universe. I love the Murderbot!! This is Space Opera to die for with a main character (snarky, media-watching, anxiety-ridden, loyal to its friends) that grows on me with every single new book. Who could have thought that a Murderbot could be so human as it struggles to deal with… humans? I just started the 5th book in the series today and I am seriously upset that I have to wait for the next one to get published.

Lucky for me I have Klara and the Sun waiting for me in my library. Klara is an artificial intelligence. Klara is solar powered. I can’t wait to meet Klara.

Hannah: Klara can’t be as cute as me!!

Have a great week, everyone!

Read a little, knit a little, and garden like your heart can’t live without it.

The Saturday Update: Weeks 11 & 12, 2021

Life has been busy and I’ve really gotten behind on everything. Hannah had her first birthday last week:

Hannah: I’m a big girl now!!

Seriously, I was so busy and worn out over these last two weeks I barely got any reading or knitting done. Adding to the energy drain was my second dose of Pfizer Covid-19 vaccine and three weather fronts that barreled across the state last week. I am grateful that the snow that these storms dumped was manageable this time, but each one took a toll on my joints and breathing. That’s okay though… did you notice that I got my SECOND VACCINE SHOT!!! This is just huge! I am starting to schedule medical appointments right and left as it is finally time to get some attention for my very badly behaved hip and breathing issues. Bring it, Mother Nature. I am ready to take you on!! The Blue-Faced Zebra is emerging from a year of strict lockdown and is on the move again!!

Also, it is now spring and the birds are back and I am so happy to see green shoots of grass again. It has been a really long year, but it is finally getting a little better.

Knitting

I’ve been pretty sporadic with the knitting and I’m kind of limited to simple stuff right now because my hands are NOT HAPPY with all of the running around and weather events, but still I am making some progress.

My Goldwing sweater is getting longer in the body and I am debating how much more to knit before I start the ribbing at the bottom. I often finish the sleeves at this point and then come back to finish off the body as I’m always running short of yarn, but this time I think I can do things in the usual order as I bought an extra skein of yarn.
I’ve also been working on these simple ribbed socks using yarn that one of my sons gifted me with for Christmas. This yarn is Classic Sock by Spun Right Round in the colorway “Hellbent”. I really wanted this yarn, but it looked awful after I wound it… all brownish and muddy looking with some color sadly peeking out. I stuck the wound cake back into the stash to hide it for a few weeks. Needing a small project to take with me on my adventures out of the house, I pulled the cake out last week and cast on socks; it was already wound and I was in a hurry. As I knitted I fell in love with the yarn again. Now the colors sparkle in the mostly grey field and the brown elements have receded into the background. Who knew that would happen? Today, in the picture, the sock looks mostly pink. This sock yarn has been a learning experience for sure.

Garden

Poor garden. It has been so neglected lately, but the plants are still hanging in there. The best thing that is happening garden-wise are the microgreens that I have growing under the lights with the orchids.

I have been eating lots of microgreens these days. Full of nutrients, easy to digest, lower in fiber, this has been a great thing to add to my diet. These greens are broccoli and taste great; I’ve discovered that they work well added to almost everything so I manage to eat some every day. Take that, scleroderma!! I’m growing them in the Hamama system that I got for Christmas and I just reordered more seed quilts because I’m really liking them.

Books

I finished up several books over the last two weeks; let’s just chat about two of them, okay?

I was so in love with World of Wonders when I started reading it. I just loved the way the author blended her joy with the natural world with her family and life experiences. Then as I read more I began to become less charmed as her interactions with nature seemed more forced and some of the magic was slipping away in her writing. By the end of the book I had gotten over her and was thinking that I could do better job writing about my own love of nature and my blended experiences. The author shared experiences from trips around the world; for me the continual moments of joy that have been my encounters with nature that are truly home grown. I was thinking of all of this as I drove east last week and passed a big herd of pronghorn antelope grazing in the Plains Conservation Center near my house. Pronghorn antelope!! I love pronghorns… I could tell you stories about pronghorns… I hadn’t seen pronghorns for at least three years, and there they were, two large groups, just as I was thinking about writing about my lifelong love of all things biological. It’s a sign. Be prepared for some upcoming “Tales of a Biogeek” on the blog.

Now to chat for a few minutes about We Begin at the End. Why did I read a book with a quote on the cover about breaking readers’ hearts? Oh, it also said that it was impossible to not keep turning the pages. Well, that part was also true. This book, constructed so cleverly that even the most astute mystery reader will miss some of the underlying themes, is a tragedy of Shakespearian proportions. The town in this book and the inhabitants are, quite frankly, broken. Badly broken to the point of being almost incapable of functioning, and yet they do somehow. Tragedies in the past have set in motion a series of events that bring unintended consequences that are both catastrophic and ironic for all of the main characters. My heart was broken, but at the same time there was a type of peace and balance in the ending. What a mess these people made of their lives; what a story this book tells. I miss my book group sooo much as this was absolutely a book that should be talked about with other readers.

Hey, did you know that today is National Respect Your Cat day? Yeppers, it is. Here are all the cats in my life in their most “You may now respect me” poses.

Hannah and my Grandkitties Jonesy and Maya will now accept your respect!!

Have a great week everyone!

Read a little, knit a little, and garden like your heart can’t live without it.