The Saturday Update: Week 30, 2021

It was so hot this week! Today it is raining and we are under a watch for flash flooding. Bugs have descended on my garden and are munching on my flowers. The grass was in distress and the back yard bunny was no where to be seen in the heat of the day. I went to my cardiologist appointment in triple digit heat and Mateo went on his first trip to the vet for vaccinations and a check up.

Mateo: It was my 4th Month Birthday and all I got was a scary road trip and an ouchy shot in my arm and leg!

Poor Mateo has spent the last two days hanging out on the bookshelf sleeping off the effects of his vaccinations and while he has run around chasing Hannah in the wee hours of the morning (did you notice the time on that clock in the picture on the left? That’s prime kitten run around time!), mostly they have just been trying to stay cool and sleeping all day. At 4 months old Mateo is already half of Hannah’s weight and he looks about half her size too. I’m pretty sure that he is going to be bigger than her when he finishes growing.

Knitting

I’ve been making steady progress on the Rock It Tee that I am knitting, but it is pretty boring to look at right now. Basically, it looks just the same as it did a week ago but a little longer. How about some socks?

I finished my assigned pooling socks using some Chasing Rabbits yarn from the stash with hot pink yarn for the toes and heels. I just purled the yarn when I came to the rainbow sections and threw in some random texture stitches (PSS) that I learned how to do while I was knitting The Sharon Show shawl last year. The section of the shawl where the stitches appeared was #21, the Catnip Garden, so obviously these are the Rainbow Catnip Garden socks. I just found some more Chasing Rabbit sock yarn that will work for assigned pooling. Yay! I’m down to only one knitting project at the moment so it is time to cast on more socks.

Except… there is another Sharon from Security MKAL coming up in a couple of weeks and I just bought the pattern and have been diving into the stash to find possible yarns to use (I’ve have recently learned that shopping the stash is actually to be referred to as “stash surfing” in Sharon land. I love this community of snarky, supportive, cat loving knitters. This new MKAL is the Snark-O-Meter and I can’t wait to get the first clue. I need 4 skeins of yarn to make this thing and here are the possible candidates right now:

I just love all of these! Should I go with the wild and crazy colors (far right) or play it more safe and knit the blue, gold and rust combination in the middle? Then there is the pink and purple combo… I love pink and purple!! In a perfect world I would be able to knit all of these, but I have a lot of sweater projects also lined up. So much yarn, so little time…

Garden

My grass in the back lawn is struggling in the heat but the backyard bunny is finding plenty to snack on. My roses made it through the heat better than the grass did: look at the pink bloom that appeared today! Some of the flowers in my front planters also died to I visited a garden center this week to pick up some on-sale annuals to spruce things up. I got the pink snapdragons cheap and they are a nice color to go with all of the volunteer snapdragons that are already appearing in my front gardens. All of a sudden snapdragons are a big fave with me.

Books

I was all over the place with my reading this week as I started two different audible books and continued reading a couple of science fiction books. Nothing is done and I’m sure not wanting to talk about them at the moment. Somehow these books actually go together, but I haven’t figured it all out yet.

Have a great week everyone.

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

The Saturday Update: Week 29, 2021

It was a lovely week last week; hot and sunny with cooling afternoon thundershowers. Perfect. I rested up the entire week recovering from the exceptionally busy week I had the week before that and got lots done outdoors.

The new kitten, Mateo, continues to grow at an accelerated rate and is eating like a bottomless pit. He is now 3 months, 3 weeks old and is much less clumsy but still unable to jump up onto counters. Whew. No rush there. By the way, do those front paws look kind of big to you?

Hannah has recovered from her visit to the vet and all the vaccinations and is returning to her playful self. There is a little problem here, though… she wants to play with the kitten all the time and me or her toys… not so much. I’ve been giving her more attention during the kitten’s naps and she is slowly rebounding to her previous endearing interactions with me and her toys. This has been a big month for her, after all, and she is coming through it like a trooper.

Garden

The garden continues to flourish in the good weather but I have some concerns for it as there is another heat dome building and this time it will be much closer to Colorado. I took pictures of the flowers this afternoon as I’m not too sure what they will look like in another week…

There is a lot of blooming going on with the roses and for some reason the insects haven’t been munching on them as much as usual. Look at how happy and fresh these blooms look! This is the second blooming of the season and I am feeding the roses again this week in the hopes that I can get a third blooming next month.

The garden is full of volunteer plants that are popping up from things I put in the garden in years past. The big winners are snapdragons… they are everywhere! I put in a picture showing all the new buds that are emerging on the plants (2nd from left) and one with dried seed pods that already dropping seeds on the same plants (3rd from left). I am moving some of the seeds to gardens in the back flower beds as I work clearing out weeds and I’m hoping that there will be a new crop of snapdragons back there next year. I’m also seeing cute little Johnny-Jump-Ups appearing in the gardens like the little purple flower in the last picture. It’s becoming kind of a Darwinian garden in this flower bed over time as the plants that are more successful are taking over my flower bed and other places in the yards.

Knitting

I haven’t said too much about it, but I’ve been battling tendonitis in my right shoulder that was putting a huge crimp in my knitting activities for the last six weeks… the pain radiated down my arm and I lost all feeling in my fingers and some function. The concern, of course, was that my knitting days were coming to an end due to joint and nerve damage from my systemic sclerosis. My rheumatologist started me on a new drug and sent me to physical therapy and I am finally, finally, recovering the use of my arm and can knit more than a half hour at a time again. Whew! People, I am back!! Am I buying any more yarn right now… no. Sadly, no.

I got busy on a new sweater and made some good progress this week. I am making the Rock It Tee using some great speckled yarn from the stash and I am so pleased with how it is working out.

The tee is constructed from the top down and you knit back and forth while shaping the raglan sleeves and the V neck in the front. In the picture on the left you can see that I have just joined the knitting below the V neck to allow me to knit in the round (so much easier on my hand) and the picture on the left shows the raglan sleeve shaping. I am almost at the point where the sleeves will be taken off and placed on holders and then it will be simple knitting in the round to the bottom of the sweater. Yay! My next ball of yarn looks a little darker so I am going to start blending it into the current fabric as soon as I’m below the sleeves.

Books

I finished this in just a few days!

The Ten Thousand Books of January was great! I had just finished a book about books, doors, keys, and some crazy-ass magic associated with them, so I was a little worried about this one too. Nope. This was a straight forward book within a book that told a great story. I really enjoyed it and loved every minute of the books, doors, keys, words, and crazy-ass magic.

Have a great week everyone.

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

The Scleroderma Chronicles: Matters of the Heart

The Blue-Lipped Zebra (BLZ for short) has been busy the last three months (once she was fully vaccinated for Covid-19) and lots of testing and doctor appointments have happened. Lots of diagnostic hypothesis have been pursued and tested; the BLZ has received several emails from doctors that let her know about good news: you don’t have pneumonia!! your heart looks good!! your kidneys are maintaining!!

All is good. Go visit your baby bunny and don’t worry about it…

Hello. BLUE-LIPPED Zebra. Chest hurts. Zebra is dizzy. Zebra pants as soon as she moves around. Zebra is absolutely sure that everything is not fine at all!

Did I mention that the BLZ got fully vaccinated? Ever since that happened (and the BLZ got a steroid injection for her ill-behaved hip) her fatigue and brain fog have receded into the background. Quite frankly, the BLZ is feeling pretty frisky and clear-headed these day between bouts of dizziness and panting episodes. She has decided that enough is enough and she is on the move to get to the bottom of what is going on!

She contacted her doctors and health providers and had them forward her the entire text of her test results. She read these results carefully and then spent some time consulting with Dr. Google to figure out what some of these words meant. The BLZ is so grateful for that biology degree and years of related job experiences.

The BLZ has limited systemic sclerosis. What she learned was…

  • A general rule of thumb, the 15% Rule, can be used to describe the number of systemic sclerosis patients with serious complications associated with their illness. For example, 15% of patients will have Sjogren’s Disease, or digital ulcers, or lung disease, or maybe pulmonary arterial hypertension. These complications are sometimes rare in the general public, but for systemic sclerosis patients they can be common.
  • A large European study found that the majority of systemic sclerosis related deaths were from heart complications (26%) or were pulmonary arterial hypertension (26%) related.
Time to stop and smell the roses. This is a little disappointing… my doctors have been reassuring me that all is fine because they are focused on lung disease. There are a lot of bread crumbs in the test results that suggest heart problems.

Then then BLZ made an appointment with her internist (the primary care physician) to go over the test results with her and to help her prep for her cardiologist appointment next week. Don’t you think that was smart?!!!

Mateo: Very smart!!

Here’s the summary of my appointment with my wonderful internist. My face was blue and I struggled with dizziness in her office: she entered a new diagnosis into my chart that says I’m cyanotic and told me to press the cardiologist for a prescription for day time oxygen so I can carry portable oxygen with me. (“Now we’re talking!!!” barked the BLZ.) She read the test results for my CT lung scan and echocardiogram and agreed with my understanding of what the test results were saying. She told me what tests to ask for from the cardiologist at my appointment. Here’s the summary:

  • I have physical findings in my lungs that consistent with pulmonary arterial hypertension. The summary results of that test say “mild to moderate” and even say that the loss of lung tissue and an enlarged pulmonary artery are due to PAH. Huh. Look at that. (“I’m just shocked, shocked!” snarks the BLZ).
  • The tissue of the heart (the muscle) is scarred and too stiff to beat well. This condition is called diastolic dysfunction and is a type of heart failure. The echocardiogram states that my diastolic dysfunction is Grade II, which is moderate. Scleroderma is attacking my heart; 15% of systemic sclerosis patients have diastolic disfunction. While there are lots of reasons why people develop diastolic dysfunction, for me the picture is different as it is a common complication of my systemic sclerosis and not a result of say… uncontrolled high blood pressure.
  • The estimated pulmonary pressure from the echocardiogram is difficult to measure in my case (Dr. Google had to teach me about incomplete TR jet and other obscure heart-related terms) and is most likely being undermeasured. The number now is the upper limit of normal; twice in the past it couldn’t even be estimated.
  • I have a newly developed hole in my heart called a cardiac shunt.
  • My heart is broken damaged by scleroderma.

So what should the BLZ do about all of this? The internist and the BLZ hatched a plan in which she should insist request direct measurement of the pressure in the right side of her heart (right heart catherization) and another echocardiogram that looks at that cardiac shunt while she is exercising standing up. Like, maybe the BLZ needs to be climbing stairs… The BLZ is just thrilled… Also, the BLZ wants day time oxygen-to-go. Yes, please. Right now, please.

Also, the BLZ is considering taking someone with her to the appointment and will have the cardiologist send the internist his notes following the appointment.

Also, when life get tough, get a kitten!! BLZs love kittens!

So, this is an adventure in progress, but I do have some gems to share with others struggling with their own medical misadventures. Get your own copies of your test results and physician notes after appointments. Google like crazy to learn what the obscure medical terms mean. Educate yourself about your illness/condition. Stay off social media as you do this and read journal articles from legitimate sources like the Rheumatic Disease journals and articles posted by the NIH. Ask another knowledgeable person to review your test results to help clarify/validate your thinking. If my journey here can serve as a roadmap for even one other person battling their way to a diagnosis, then this post was a success.

And remember to be brave.

It is good to have a diagnosis, even if it is a shame.

Zebras are brave!!

The Saturday Update: Week 28, 2021

The weekend was busy and I am running late, but there is so much going on I thought that I should get my update entry out there so that next week’s edition doesn’t grow to completely unmanageable proportions. It’s a plan, anyway.

I had appointments every single day last week, and two on Friday. I ran lots of errands while out of the house and by the time the weekend arrived I needed to do a little recovery. So what all happened? I bought a new refrigerator (!), made the arrangements for new fencing and a gate into my back yard along the side of the house, went to physical therapy, and met with my primary care physician. Whew! The Blue Lipped Zebra needs to write an update, but that’s another post. I also took Hannah in to visit the vet and get caught up on all of her shots.

Hannah: I don’t like adventures!

Hannah was so good at the vet. She took her shots like a champ and purred while they drew blood to test her for FIV. I insisted that I needed to stay with her during the blood draw and we got through it all with the minimum of upset for my girl. Whew! Then the pain and stiffness arrived. She growled if I tried to pick her up and wouldn’t even put weight on her front (vaccinated) paw for two days. Mateo, fully loaded with kitten energy and dying to rough house with his big sister, had to be distracted all weekend as Hannah hid out recovering from her vaccination reactions. Today Hannah is back up and the two cats are again chasing each other. Yay! Mateo goes for his shots next week…

Hannah wasn’t too sore to miss watching her baby bunny every day through the garden window. Mateo hung out with her when he was sleepy and is turning out to be the best little Hannah-companion ever. Except I’m pretty sure that he is going to be a lot bigger then Hannah when he is done growing!

Knitting

I finished Ranunculus!!

I am so, so, so happy with the final project!!

This is a pattern that is shockingly easy to modify and the pattern overtly support this. I tried to record what I did in my Ravelry notes as I’m pretty sure that I will be making another one of these. I’m exceptionally happy with the edging that I used on the bottom of the sweater and on the sleeves. I had cast off the sleeves while knitting (following the directions) and then decided that I wanted a better behaved edging that wouldn’t roll up my arm. I considered knitting Icord, but ended up stealing using the edging from a previous sweater, Misurina. I picked up stitches along the bound off sleeve edge and immediately launched into the edging: twisted stitch ribbing and then three rounds of stockinette before binding off to create the neatly rolled edging. The edging on the sleeve is stable and well behaved. I knitted a matching edging along the bottom of the sweater with a few more rows of the ribbing. Pretty awesome little sweater, don’t you think?

Today I wound the yarn to cast on my next little summer sweater. I’m getting into these little layering pieces that I can use on cooler summer days now and layered over long sleeved tops and under cardigans in the winter.

Garden

The weather has been exceptionally kind to the garden and the roses are just now starting to bust out with their second blooming of the season. This is kind of early and means that I may get a third blooming before the first hard freeze of the fall. I’m so pleased with the gardens in general. I always plant little bedding flowers hoping that they will reseed to create more plants in the coming years, but it doesn’t always work out for me. Except this year! I had planted miniature snapdragons two years ago that put out a couple of little volunteers last year that I took good care of. This year the garden, soaked every few days with another rainstorm, produced dozens of new snapdragons. Okay, these plants are all over the place and not just in the garden, but I’m going with Mother Nature and taking good care of them because I am now just plain charmed by the abundance of color.

The original snapdragons were a light orange/pink in color, but the second generation of offspring are in a whole range of colors from yellow to hot pink with all the shades of orange in between.

I pruned the roses in front last week and gave the plants a good feeding so there should be new growth coming in the days ahead. The roses in the back, fed a couple of weeks ago, are already blooming again. Stay away from the rose, baby bunny, you hear me?!

Books

I spent a lot of time reading this weekend recovering from the adventures out of the house last week (and protecting poor Hannah from the wild kitten!). I finished The Starless Sea, blazed right through The Last Thing He Told Me, and then jumped into The Ten Thousand Doors of January.

The Starless Sea is a rich, complicated book with multiple story threads that slowly emerge from other related stories. It relies on metaphors and imagination an awful lot, and I would have quit on it more than once expect for… it was so well written that I kept wanting to memorize little phrases to keep them with me always, or maybe rip out some pages to fold into little stars to hang somewhere, or buy some clothes with bees on them, or go dig through the pantry to find some clover honey… Truthfully, the author almost killed the book with her endless creativity, but in the end the story lines pulled together, things almost made sense, and I stayed up way too late to get to the end. I liked the end. Then I went online to look for some bee jewelry, but then I am a sucker for bees and stories.

The Last Thing He Told Me rolled right along in a simple, well-constructed story that kept me completely entertained throughout. The twists and turns in the story’s plot were plausible and not obvious, the connections to the characters were perfect, and I quite frankly loved it. Perfect book to read following the brain-frying twists of The Starless Sea.

Then I picked up The Ten Thousand Doors of January. Hey, can you see how beautiful that cover is? It has hanging keys and doors: these are big elements of The Starless Sea. I’m only a few chapters in, but already I’m captured by the story…

Have a great week everyone.

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

The Saturday Update: Week 27, 2021

May I present to you Mateo the CoalBear.

He’s a matte black fluffy ball of cuteness that comes to life at night. I wanted to call him Bear, but that is too doggy-like. Coal is so… obvious. Therefore he is a CoalBear.

Mateo is a really laid back kitten with a cute trill, a peeping meow, and a big purr. He is eating his kitten food like a bottomless pit, ignores the plants, is not at all interested in my knitting, uses the scratching posts like a good boy, sleeps under the bed at night, and meows when he wants to be fed. Oh, and he loves Hannah.

In other words, he is perfect!!

The week has gone really well between the two felines. Hannah is now very attached to the kitten and calls for him to come play with her. They wrestle and chase each other endlessly with few problems. Each cat has zones where they can escape from the other and so far things are going smoothly, but I am still keeping part of the house closed off and kitten proofing-like crazy. Right now Hannah has the upper hand but the way the kitten is eating the tide will be turning soon.

Knitting

I’ve been steadily knitting along on my Ranunculus and it is now below my waist. I’m considering options for how to finish the bottom at this point as I knit. The pattern calls for several inches of ribbing, but I want to continue the stockinette until the last couple of inches and then maybe add I-cord or a combination of twisted rib and then a few rows of stockinette to create a clean rolled edge. The sleeves were bound off earlier but I may cast on and replicate the finish on the bottom. I-cord will be easy, but I kind of like the idea of twisted ribbing…

This pattern is very adaptable and easy to knit. I am knitting with fingering yarn on size 8 needles and have chosen the smaller neck opening and short sleeved options.

Garden

Things are looking good in the garden this week! I still have the baby bunny and he is slowly cleaning me out of dandelions. Yay!

Books

I have totally gone down the rabbit hole with this book!

This is a book that makes you think of a lot of other books while you are chasing stories that seem to be interconnected to other stories that are books inside of books. I love this book, but I am still hoping to understand what it going on. There are keys, swords, bees, characters who knit, magic, and stories that are kind of magical. There are lots of doors to open and pass through to get to the stories, and of course there are books, books, books! I want to highlight lines in this book and hunt down other people to talk about it with. Lucky for me my niece in California (that knitworthy one!) is also reading the book.

Did I mention that some of the characters are knitters? And that the first line in the book is… “There is a pirate in the basement.” I keep remembering little snippets of The Princess Bride, and the Harry Potter books, and The Game of Thrones books as I read. I want a necklace with a little bee on it… and a key… but I want a star instead of the sword. I’m having fun with the book and it certainly is enchanting to read.

Have a great week everyone.

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

Free Range Kitten

So, I was getting a little concerned with how things were going yesterday morning. For two days I had the kitten locked up in the spare bedroom with me going back and forth between the two cats trying to calm Hannah and trying to entice the kitten out to eat and play. It was not going well.

The kitten, his nose kind of running, was holed up under the loveseat and refusing to come out until late in the evening.

Hannah kept calling to me the whole time I was in the kitten room and it was hard to reassure her through the door. I was worried about the kitten getting too warm packed under the loveseat. Hannah kept growling whenever she caught a whiff of kitten scent. Not good. I was a little worried that maybe I had made a mistake: Hannah was too bonded to me to allow a kitten into the house.

I woke up yesterday morning thinking about getting a screen door cheap to use in the doorway: the room was too hot and Hannah needed to see the kitten. Then I decided to remove a window screen and to use that across the bottom of the door into the kitten room while blocking the upper half of the doorway with an old poster left over from my teaching days. Hey, it just had to hold together for a day or two.

Ta-daa! Hannah can watch the kitten while I interact with it and the open door will make the room cooler.
Hannah watching me feed and play with the kitten inside the room early in the evening.

Okay, I had to actually lift one side of the loveseat to get the kitten to come out, but once I did that he was hungry, friendly, and used his cat box like a good boy. Hannah watch all of that through the screen.

Eventually, after playing with everything in the room, the kitten finally discovered Hannah. Oh. Do you want to be my friend?

Hannah wasn’t snarling and carrying on, the kitten wanted to get out of the room, and I was tired of the whole operation, so around the time that the fireworks outside were getting really loud and my nerves were fraying around the edges, I removed the screen.

Wow. The kitten explored the whole house with Hannah following along and emitting the occasional hiss/growl. Eventually the kitten became interested in Hannah and the great play event erupted downstairs as Hannah and the kitten chased each other for over an hour. The kitten ate another dinner and… Hannah had a cow when the kitten ate some of her food. Major eruption of growling. She doesn’t care for me petting the kitten all that much, either, but even though she voiced her objections, she didn’t attack the kitten. Whew. The fireworks were slowly ending outside and we didn’t have any significant ones inside. It’s a win!

Hannah and her kitten on the cat tree this morning.
The kitten this evening snoozing at the end of the bed while I type this.

I feel like we are over the hump, people, and I have successfully integrated the kitten into the house. Today Hannah is more like her old self and I am being really careful to maintain all of her routines. The kitten has eaten several more times from Hannah’s food bowl and she is handling it better. Have I offered the kitten any cookies yet? No, I have not! Maybe in another week or so Hannah will be able to handle the idea of the kitten eating some of her cookies. Maybe…

Hannah: Sigh.

I have to mention that the reason that I decided to get the kitten was that Hannah seemed desperate for a playmate. She cried all day long for me to come play with her laser light or to throw toys for her. She hid in her papers to ambush me as I walked past and just plain seemed a little desperate for companionship.

It has been an exhaustingly long 4 days, but this afternoon I heard Hannah calling for me to come play with her downstairs…

and the kitten went instead…

and I heard them playing together.

Good job, Kitten Mom. Good job!!

The Saturday Update: Week 26, 2021

I’m not going to share much this week because… this happened.

This little bundle of charcoal fluffy cuteness came home with me this week!

He still doesn’t have a name and has spent the last two days stuffed under a couch hiding from the world in the spare bedroom.

Hannah was totally, like… YOU DID WHAT?!!

There was some hissing and growling that came out of the little Hannah princess. I thought that things would go better, but evidently not. I scrambled to get the spare bedroom kitten proofed and all of the plants in the indoor garden moved to the outdoors or some other suitable location away from kittens. The kitten meanwhile vanished and I spent a few hours hunting for him in the house since I couldn’t find him in his room. Hannah shadowed me all though the search as I started to get more and more concerned about the vanished kitten.

He was in the spare bedroom all along crammed underneath a cabinet through a gap in the back of the paneling.

Finally after midnight all was settled down and the kitten was exploring his new room.

Hannah wasn’t taking any chances and slept high on the bookshelf in my room.

Hannah: Best to be safe… he can’t get me up here!

The downside of the bookshelf is that she leaps from the shelf to my bed to get down… and then she slept on top of me when she wasn’t on the shelf.

This is going to be a rough couple of days…

Have a great week everyone.

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

PS: the Mando mitts that I knit for my niece safely arrived in California.

This is the picture that my niece sent me. So knitworthy, my niece!!

The Scleroderma Chronicles: World Scleroderma Day, 2021

Here we are again… World Scleroderma Day.

I’ve written about scleroderma on this date for several years now. I just went back and read what I wrote last year and decided that I did a pretty good job. I talked about getting diagnosed, the complications that are being caused by my disease, and what that means in my life. Here’s that post if you would like to check out my take on things last year.

This is one crazy-ass disease and it certainly has complicated my life. In the year since I wrote that last post I have hung in there (hey, staying home for a year on oxygen slowly improving was actually good for me) and then emerged from strict lockdown to get lots of testing to try to sort out what is the cause of my blue-lipped status and the source of other little issues that I have going on. While thinking about what to write today I thought of a few things that I haven’t written about before and some things that are new since the last post.

The correct name for the type of scleroderma that I have is limited systemic sclerosis. Systemic means that every part of my body is being impacted by this disease, and the word sclerosis means that scarring is happening in tissues all over my body. What’s happening to me is not obvious to the outside viewer, but it is insidious and ongoing all the same. Somehow, by some mechanism that isn’t clear, my systemic sclerosis is being driven by antibodies that I’m producing that react with the centromeres of my cells.

What’s a centromere? I’m shocked, shocked I tell you, that you just don’t know that! Seriously, the centromere is that little place in the middle of a chromosome that can be seen when cells are getting ready to divide. This is a little tricky because the only time we can see chromosomes is when cells are getting ready to divide and they have already copied themselves: the little pinched waist in the middle of the chromosome where they are connected is where the centromere is located.

Got that?

This image belongs to the NIH; as a taxpaying citizen I hope that it is okay for me to use it here. 🙂

Somehow something happened to a protein located in the centromere area of the chromosomes in my body that made it look “different” and my immune system responded by making antibodies against that protein. The antibodies that are produced are called “anti-centromere antibodies” and their presence is highly suggestive of my form of systemic sclerosis. The alternative explanation is that my immune system just went berserk, decided to attack my own cells, and began making these antibodies on its own. I personally think that something changed and then the antibodies were made as a response. My money is on a virus.

It really doesn’t matter all that much since, once the immune system is triggered, the immune response can’t be turned off and one day you are sat down in some rheumatologist’s office and carefully told about what is happening to you and what to expect in the future. Your skin will get thick. Your blood vessels will be so damaged that they will thicken and spasm shutting off blood flow to parts of your body unexpectedly. The scarring tissue will build up in your digestive tract and damage the smooth muscles that you need to move food along. Your kidneys will lose function. Your nerves will be damaged. Your lungs need to protected since they are especially vulnerable to damage from accidently inhaled stomach acid. If your disease flares badly enough you can develop autoimmune pneumonia. Your tendons, muscles, and joints are all in trouble. You are in trouble. The damage will progress and there is no cure.

“This is really serious,” one of those early doctors told me. “This is like a diagnosis of cancer, but of course, some cancers can be cured…”

Well, shoot. Good thing there are drugs to help control symptoms and to slow the progression of the disease by dialing down the immune system.

Yay for drugs!! I am on drugs to shut down my stomach acid production (my lungs are doing pretty well) and on drugs to crush my immune system into submission. I’m on anti-inflammatories to control other cellular pathways activated by those ill-behaved antibodies. I get steroid injections to help my damaged joints and inflamed tendons. I have strict dietary limitations. I do lots of physical therapy. I’m on oxygen overnight to keep my red blood cell count in a normal range. I dress in layers to help control the spasms of my circulatory system, a phenomenon called Raynaud’s. I knit almost every day to keep my fingers from stiffening up and contracting. I now have a shiny purple cane to help me walk.

Every day is a challenge, but I am fine.

So what is new this year?

Scleroderma has damaged my heart. They are still testing to clarify exactly what is going on, but so far they have established that there is scarring in the heart muscle that is making my heart “stiff” and that somehow I developed a hole in my heart. There are suggestions of pulmonary hypertension, but I need more testing for a definitive diagnosis. No wonder I turn blue in the face and pant when I walk.

Oh, yeah, there is also a pandemic going on.

One of the greatest ironies of the last year is that serious cases of Covid-19 share similarities with the clinical symptoms of scleroderma crisis. Immune system-mediated pneumonia caused by an overreacting immune system is a hallmark of both conditions. Then there is this… Remember those drugs that I take to crush my immune system into submission? I take two drugs for that purpose. One of them, hydroxychloroquine, was (irresponsibly) politicized by influential individuals early in the pandemic and therefore became short in supply; my muscles and joints immediately rebelled when my supply lapsed early in the lockdown. The other drug that I take, mycophenolate mofetil, is linked to poor response to the Covid-19 vaccine. I am vaccinated and I am making anti-Covid antibodies, but since my total antibody count is very low my doctors aren’t sure I can fight off a Covid-19 infection fast enough to stay out of the hospital. I’m advised to continue to mask and isolate because… blue face, hole in heart, stuff like that…

For me, lockdown goes on.

So, here are the takeaway messages from this post. Be kind. There are illnesses that are really debilitating that you can’t see when you look at that person walking into a store from a handicapped parking spot. Don’t be dismissive of conditions with funny names that you’ve never heard of before. I know that it is hard to understand conditions that are beyond your experience and that you can’t really see, but take a moment to let someone tell you about their illness and the daily challenges that they embrace. If you meet a person with an autoimmune disease, they deserve a hug. If they have scleroderma you should give them two hugs! Be understanding of people who are still wearing a mask in public; perhaps they are braver than you can imagine.

Today is World Scleroderma Day.

Go Team Teal!!

Note: If you would like to know about different types of scleroderma you can learn about them here.

The Saturday Update: Week 25

The last weekend in June and it is raining and cold outside. June, June, June… when are you going to get with the program? The calendar has finally tipped over into summer and you deliver a weekend that makes me wonder if I am going to have to turn the furnace on again? Good grief!!

The week produced a baby bunny that is hanging out on one side of my yard under a large shrub and in one of my rather wilderness-like gardens. What a cutie he is!! He shows up every day around dinner time as some sweet entertainment while I’m eating out on the deck.
He really is pretty small still; this shot gives you a better idea of his size. That shrub seems to be where he’s hanging out.

I don’t have any pictures of the garden flowers because they are just drenched at the moment, but the lawn is really happy to get all of this water after a couple of weeks in parching heat; I hope to get fertilizer and soil conditioner onto the back lawn during a lull in the rain early next week. This actually is a nice break for the plants. Hope my little bunny baby is doing okay with all of the wet.

Knitting

The big accomplishment of the week was finishing up the Mando mitts and getting them mailed off to my Knitworthy Niece in California. These were really a somewhat challenging knit, but the final product totally makes it worth the effort.

The mitts are knitted from a chart, which I prefer, so that part was good. The colorwork issues emerged early on as I had to figure out how to manage 3 or 4 different colors of yarn as I worked the mitts. I finally carried two colors in my left hand, twisting them as I knitted, and holding the third color in my right. I did catch floats and twisted yarn as I could, and still decided to just duplicate some of the details after the mitts were finished. The blue detailing on Mando’s helmet was added after the knitting was over as was the little blue object that Grogu is holding in his right hand. Whew! Then there was the issue of all the ends…

There were lots of loose ends to weave in after knitting. Good thing I had such quality help!

It isn’t obvious in the pictures, but the tips of the fingers used a new bind off for me that blends well with reverse stockinette and is nice and stretchy called Icelandic bind off. Perfect. Who wants to put in all that work to have fingers that are too tight, right? I’m thinking that I might use this bind off with garter stitch edges on sweaters and maybe on the cuffs of arm warmers.

I cleaned out the stash (again) this week after the mitts left on their journey west to the Great State of California (the land of my birth) and put together several kits of printed out patterns with the yarn to make the project. There are at least six sweaters waiting for me to get to them. I am down to only two unfinished projects so I pulled out my hibernating Ranunculus and got back to work on it. There is also a pair of socks to finish and then it will be all sweater knitting, all the time for awhile. (Did you want a picture of my ranunculus project? It is pouring rain out there, people!!! Maybe next week I will have something amazing to show off.)

Books

There isn’t all that much reading going on at the moment, but I did wander into a bookstore and looked at the books on the sale table. The first book was about a person who finds a special book that opens a new world to them. Then the next book I picked up was about a young person who found a transformative book. Then the third book was about… a book. Kismet, obviously. I bought all three books.

I can’t wait to dive into these books. 🙂

Have a great week everyone.

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

The Saturday Update: Week 24

June continues to misbehave: we had three days above 100 degrees Fahrenheit this week and several severe thunderstorms with tornados! My arm is still swollen and painful but the numbness is starting to improve; as if in solidarity one of my knees started to complain just today. Sigh. Knock it off, you guys! My new refrigerator came today and I am so happy to have dependable food storage again. Besides, it is just beautiful and shiney! The flowers in the garden are starting to bloom and the roses in particular are looking mighty fine. I have started to knit again every night and I also found some interesting books to read. I bought new glasses and ordered a bunch of fun stuff from Amazon. (Do I need purple and gold washi tape for my journal? Why yes, yes I do. I also got pink and gold replacement bands for my Fitbit and a pair of pink/grey comfy pants.) I went to the yarn store and bought more yarn… that may have not been wise, but I want to believe that I will return to full knitting capacity soon. 🙂 Okay, June isn’t being all bad… it was Hannah’s one year adoption anniversary this week.

Hannah on the 15th (her adoption anniversary date) and little kitten Hannah on the day I brought her home last year. I tried to recreate the picture from her first day home but she wasn’t all that interested and I was lucky to get the shot that I did. To celebrate her anniversary she got crispy pink paper to play in (that is always a big hit with her) and some bows to drag around. Last night I applied to adopt a kitten companion for her from the Cat Care Society and today they called me to approve the request and put us on the list for kitten alerts. Hannah was adopted from this shelter and they consider it a priority to get her a little friend. Yay!

I’ve requested a male, orange tabby kitten. We’ll see what happens. Hannah can’t wait.

Knitting

I’m working steadily on the mitts for my knitworthy niece who is a huge fan of all things Mandalorian. I am now up to the fingers of the second mitt.

Aren’t these the cutest things ever?

I need to do some duplicate stitch detail work and then there are all of the ends to weave in, but the end is definitely in sight now. I’m almost tempted to make a second pair but I have soooo many sweaters and other projects that I need to get done. This pattern is Mando (Natela Astakhova).

Garden

The roses are blooming! The roses are blooming! The roses are blooming!

From left to right, these roses are Hot Cocoa, Princess Alexandra of Kent, Cinco de Mayo, and Home Run. We had lots of rain this spring and I have been watering every day since then; this is the best crop of roses I’ve had in quite a while. I really was responsible this time with the roses as I covered them with frost clothes if there was even a chance of a hard freeze and I fertilized them early in the spring. This week they got more fertilizer and they are all looking good with lots of buds on the plants still waiting to bloom. Yay, garden!!

Books

I have two books going right now; one is text and the other is an audiobook. They both are really holding my interest and curiously they even look similar.

How crazy is it to be reading icy blue books when trapped in an heat wave. I’m only half way through The Doors of Eden and even less with The Cold Millions, but both books are thought provoking and really interesting.

And that’s all I’m going to say about them right now. 🙂

Have a great week everyone.

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

Scleroderma Update: My rheumatologist had my hands x-rayed this week and I have severe arthritis in both of them, but especially the one that is now acting up. I was kind of surprised and I’m hoping that they can do something to help with the swelling and numbness. My echocardiogram results also came back and I do have a hole in my heart, but an email came from my pulmonologist yesterday saying that it isn’t big enough to account for the whole panting/blue lips thing and he wants to do some more testing. Fun. We have an appointment next week.