Anemia – Yarn, Books & Roses

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.

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…

Murderbot and Octopuses

It has been months since I got sick with the Wannabe Covid and I’m still flirting with long-hauling. Ugh. My fibromyalgia symptoms seem to be better right now, but I’ve become anemic. Fabulous. No wonder I’m so exhausted! The BLZ (blue-lipped zebra) is running wild lately. I spend my nights listening to Murderbot audio books as I try to fall asleep, and lately I’ve been reading books in the daytime that feature… octopuses. Last week the two things, Murderbot and octopuses, began to overlap in my mind.

I guess I need to set the stage a little here. I’ve been interested in octopuses for some time now, and I’ve been reading science fiction books for most of my life. I’ve heard of octopuses who engaged in antics at the aquarium as they snuck out of their aquarium to catch (and eat) the fish in other tanks. There was a news story about a ~~jail~~ aquarium break by an octopus who returned to the ocean via a floor drain. I loved the octopuses in these books when I read them.

Children of Ruin was especially interesting to me because it raised an interesting question: what is intelligent life, and what would it look like. Can it evolve in species already on Earth, and would we recognize it when we saw it? One of the things that always makes me cranky when reading science fiction is… the aliens always share a lot of attributes with humans, and it is a given that intelligent life would evolve specific cultural and technological attributes that mirror our own. Why. Why would that be? Why do we assume that the only yardstick for self-awareness, communication, and cognitive function has to be exactly what we are? Perhaps that is human-centric hubris, and we should look at the world (and space) with better eyes.

Then I read this book last week and I totally went down the Murderbot/Octopus rabbithole.

Do you know Murderbot? Murderbot is a robot/human cloned-tissue construct (corporate owned, of course) that was designed to serve humans as a security/defense tool. It has a failsafe device installed in its brain to control its behavior called the governor module: Murderbot hacked its governor module and is now a free agent trying to figure out what it wants while consuming massive amounts of media. Murderbot is a person, but it doesn’t want to be human. It is its own self, struggling to find its way and purpose (while killing/maiming the occasional bad human along the way) in a universe of heartless megacorporations who abuse human rights and use constructs as disposable tools.

The Mountain in the Sea explores some of these same issues. The book askes the question: What is a person? There are evil megacorporations who abuse the environment and employ human trafficking in their quest to turn a profit: Murderbot would completely understand this world. Even more, the book askes other important questions: What is required to be considered an intelligent species? Language? Tool use? Community and culture? Self-awareness and obvious problem solving? How do we identify and evaluate these?

The Mountain in the Sea has a robot with a brain that passes the Turing Test. Is it a person? What rights should it have? There is an octopus that probably could also pass the Turing Test if there was an octopus version. There is a soldier who provides security for the scientific research facility who utilizes octopus-like technical interfaces in her work. She also hides behind a robot-like translator so she can avoid interacting with the other humans… if she was Murderbot she’d be watching media. There is a scientist who is driven to build a perfect human-like brain, and a scientist who is driven to understand other brains. There are victims of human trafficking, and it is hard to not ask the question, what are the rights that all persons are entitled to? The Mountain in the Sea kind of had it all (if you are a BioGeek struggling with Wannabe-Covid long haul symptoms), and it was the perfect companion to my nocturnal Murderbot audiobooks.

I engaged in a lot of googling to check out information while reading the book. Yes, octopuses really can change their skin color and texture to immediately blend into the background. They really do build cities. They really do have brains that are completely different from our own, and those arms are somewhat autonomous as they interact with the environment. They use tools. You can check out these sources to learn more about octopuses. Octopus 101 and Octopuses Keep Surprising Us.

Late last week I went on an outing and headed into the book store.

If it had an octopus on the cover it pretty much jumped off the shelf and landed into my basket. The dragon got in there too, somehow, but it lives in water too, right? It probably is self-aware and intelligent, right? It’s the Year of the Dragon, right?

But first, I’m reading all the octopus books.

p.s. The Murderbot Diaries is being adapted by Apple TV+ into a series. Yay! Murderbot would be thrilled to know it is becoming streamable media.

p.p.s. Anemia can be a symptom of Covid long-hauling. Seriously, I just wanted to pull my hair out when I saw this article. I was at the low end of normal when I got sick in October, and now my iron (ferritin) level is half of what it was. Wannabe Covid, I hate your guts!