systemic sclerosis – Yarn, Books & Roses

The Scleroderma Chronicles: Complicated AF

February was a good month for little ol’ scleroderma me. I was getting stuff done around the house, weaving lots of new projects, attending social events, and enjoying a sense of improvement. I’m doing pretty great, I told myself! I sailed through my routine medical appointments, had my usual heart echocardiogram done, and didn’t think about it too much. I had some cardiac symptoms last fall, but they seemed to be resolving okay.

Feeling positive and joyful, I bought a lots of yarn in the gloom of winter. Look at all of that pink!!!!

Then the echocardiogram report came back. Oh, oh. I have had some fluid around my heart for several years now (a pericardial effusion) that my cardiologist has been following. It is rather common in systemic sclerosis patients, with about 25% of us having one at some point in our journey. This time the effusion has grown, completely surrounding my heart, and large enough to cause symptoms and to be a concern. Oh. That’s why I was feeling dizzy and experiencing some chest discomfort last December. My cardiologist ordered up some blood work to see if I have active inflammation and pericarditis.

Nope. My inflammation markers are normal. Kind of a bummer, as that means it won’t respond to anti-inflammatory medications, and this is something else. Scleroderma, hard at work. The possibility of broken heart syndrome has been raised. Fabulous. My cardiologist scheduled another echocardiogram for early June. I have kind of a concern that there might be some type of procedure that involves a huge needle that will be required to remove some of that fluid. I just have to be complicated, right?

Then I got sick with some nasty respiratory virus…

I’ve been sick for almost three weeks! This was a respiratory virus, and I’ve been on oxygen for two weeks straight and taking all my drugs while following the directions for home care from my pulmonologist, too dizzy to go to urgent care, but not sick enough to dial 911. Worried friends have been checking up on me, and I’ve been faithfully reporting out my symptoms and oxygen levels every day to them. I started using my respirometer again to get my lung volume back up, I was able to start going off oxygen for a few hours each day towards the end of the 2nd week, and my heart slowly stopped having palpitations. Am I still having tachycardia events? Why yes, yes I am. Stupid crazy heart! In spite of that, I have finally started to feel like myself again this week, and my appetite has come back. The cats, who have been very patient, are overjoyed to have me up and about again, and I’m finally able to make chemo hats and knit again. I even got my little rigid heddle loom warped yesterday!

Doesn’t this all sound ridiculous? Like, why wasn’t I in urgent care sooner? Well… I’m complicated. Going to urgent care is risky as I might be exposed to ANOTHER virus. If I have to call 911 the ambulance will take me to the dreadful hospital that is closest and not in my health care network. The doctors in the urgent care and ERs don’t quite know what to do with a patient like me, and going in usually isn’t productive. Ugh. I instead called in and got advice from my specialist nurses, and they clarified where the red lines were: if I couldn’t keep my O2 numbers up in the 90s, or if I developed significant symptoms of cardiac tamponade, I had to get emergency intervention. In the middle of the second week another scleroderma patient sent me this…

Anyway, that is me. Miss Complicated AF. Everything is just fraught when I get sick. Do I stop my immunosuppressive drugs so I can fight the virus? Nope… those drugs are holding my autoimmune lung disease in check, and as soon as I cut back, I got a lot sicker. Should I use the steroid inhaler? Yep, that helped. Saline nasal rinses? Good lord, what is all this nasal bleeding… Decongestants? Only in the morning. Mucinex? Yes, max dose!!! Finally, over the virus, finally off oxygen, still struggling with some cardiac symptoms, I am dealing with crushing fatigue but still starting to dream of knitted wonders with all of my fabulous yarn. My orchids are blooming again, and the bunnies are dancing in the yard. Last night I saw a great horned owl fly across the street in front of me when I brought in the trash cans from the street. The moon and planets gleamed above me, and the evening was warm with a nice breeze. Glimmers continue to appear around me, and I am feeling the joy again.

Today I cleaned out the yarn stash, and I’m ready to start knitting on some fabulous (pink) sweaters. Some really great patterns hit the Ravelry feed while I was sick, and it is time to cast on some joy.

You hear that crazy heart? Time for some joy. Behave yourself.

PS: Do you wonder what the sweater patterns are?

Cloudbreak Tee by Wool & Pine
Hearthside Pullover by Wool & Pine
Dragonfly Sweater by Elenor Mortensen
Hearthside Cardigan by Wool & Pine

Hannah and the CoalBear: All the Updates

Hi. I’m Mateo.

Don’t you think that my fluff looks nice?

It is nice and warm outside almost every day now and I get to head on out to the catio to check on the bunny. He’s still there!!! I would like to stay out all day but the Mother of Cats forces me to COME BACK INSIDE after she makes her breakfast and morning latte (She tells Hannah that she needs to learn how to make a latte, but does she pay attention? No. Hannah just does whatever she wants, and she never gets into trouble like I do…), and then she usually doesn’t let me outside again. Why is she so mean!!! I watch the bunny from the front window, but it isn’t the same…

The Mother of Cats has been spending a lot of her time weaving downstairs on the big loom. This loom is a little bit scary. She stomps on the floor peddles and pulls the big swingy reed thing towards her while throwing yarny shuttles back and forth at the same time that crashy parts are going up and down. Do I hang out with the loom? No. I do not. I do feel like I should show off what she has been making.

After the Mother of Cats had finished the homework weaving she dug around in her yarn stash and made a woven piece from some sock yarn that she bought years and years ago.

Look at that yarn! Years ago she made those socks with the elephant on them, and last week the rest of the yarn was used on the loom to make a table runner. Personally, I like the socks better, but the Mother of Cats likes the new runner too. It is cool, right? The Mother of Cats was so excited by the look of that yarn she headed back to the stash and got MORE yarn.

This yarn, which is called Silk Garden, is thicker than the first yarn. Wouldn’t that yarn make a nice cat toy? Maybe some knitted mice? The Mother of Cats completely ignored my needs and wove another table runner. She likes the way it looks so much she went back to the yarn stash again and got some pink silk yarn. Yep. You Guessed it. ANOTHER table runner is now getting woven on the loom.

Hannah likes this pink shiny weaving more than I do. Pink is kind of her favorite color.

I do have to mention, the Mother of Cats has been kind of crazy with the pink lately. She went out and bought pink plants. Then she bought pink shoes. Then she bought a pink cricket. Seriously, crickets are for playing with!!! Crazy Mother of Cats, she has it with the plants in the indoor garden.

The Mother of Cats says that the pink makes her happy, so I guess I have to put up with all of this pink silliness.

I’m trying to think really hard about what else has been going on around here. There has been some knitting. Boring. She has made some more hats for the infusion centers. Also boring. She went out and left us several times this month for meet-ups with her friends and some doctor visits. Also very, very boring. I guess I can show off the weaving on her rigid heddle loom:

This yarn is very soft, but not as soft as my fur!

I guess that’s all that I want to talk about. It is about time for the Mother of Cats to feed us our special night time tuna, and then I’m going to make her play with me for a while.

Bye for now,

Mateo

Notes from the Mother of Cats:

The first color changing yarn that I used on the loom is Noro Silk Garden Sock Solo, a single ply fingering weight yarn. I wasn’t sure how the cotton warp would work with the wool blend yarn, but it looked great.
The second Noro yarn is Silk Garden Sock yarn, a DK weight single ply yarn that is twice as heavy as the first Noro yarn. It wove in great, and I liked the look of the more solid color blocks.
That pink yarn is also a DK weight called Bamboo Silk (silk/bamboo mix) that was hand dyed by a weaving shop north of me. I’ve had this yarn for years: really special, it was hard to find a good use for it. I’m liking it in this woven piece. I plan to put another warp on the loom in the same threading pattern, but this time in a purple colored cotton, and then I can weave another piece with the same pink yarn. I can’t wait to see how that turns out!
Don’t you like the pink cricket? My new rigid heddle loom is a cricket made by the Schacht Spindle Company. Of course it needs a pink cricket to keep it company!
I’ve been reading convoluted mystery books lately. The two that I am reading right now are set in very different situations, but I am loving the many technical details, cultural themes, and foreign settings that are similar in a spooky way.

Imagine living in a time far in the future. You are the pilot attached to an archeological group recovering artifacts from ancient civilizations on distant planets that abruptly disappeared. What happened? Can a lost alien language be decoded in time to understand these ancient beings who have left behind their poetry, religion, and relics before the catastrophic mechanism that killed them returns? It’s an interstellar crime of cosmic proportions, and time is running out. The key to solving much of this is… a printing press.

Or, almost as foreign as the ancient aliens and their lost civilization, is London 1667. It is the year following the Great Fire, and political intrigue is thicker than the smoke of that great conflagration. The city is being rebuilt, but refugee camps remain. There are children afflicted with scrofula, a form of tuberculosis that presents in horrible swollen tumors grown from lymph nodes in the neck. There is murder. There are royal directives, and machinations by important people to secure power. Nothing makes sense, but everything is connected. There is a printing press involved. Of course.

I’m having fun reading both of these at the same time.

The other big event that happened. That would be Rare Disease Day on February 28th.

I decided to not write a whole post about it this year, but I wanted to make a point or two. There I am, looking much better than I deserve to, flashing my zebra shirt. The decal on my car tells the story. Even though I am told often that “I look great!”, and I suspect that some of those people think that I am faking for attention, the reality of scleroderma is that it is… complicated. I take 22 pills a day in an ongoing effort to slow the progression of the damage being caused by my disease, and almost all of my organs are being impacted. I now have serious lung and heart complications, but to be truthful, the impact to my digestive tract is what causes me the most grief. Scleroderma, especially the systemic form, is rare; the complications that it brings are even more rare.

Systemic sclerosis, the type of scleroderma that I have, like many other rare diseases, is invisible, but the struggle is real.

Whenever you can, support the zebras that you find in your life.

Thoughts on the Night of the Snow Moon: Cruel Romance Personage Year

Some of you who have been following my blog for a while know that I am a huge fan of Murderbot.

Like, I try to channel Murderbot whenever possible. Murderbot struggles with social situations. Murderbot is painfully aware that he is not like other constructs and absolutely knows that he is not a human. He pretty much is unique in most settings. (If he was a human, you might consider him a zebra). Murderbot is a total bad ass; often terrified, roiling with self-doubt and uncertainty, he takes action to protect what is important, and keeps moving forward. There might be some violence and murdering, but he gets the job done. He also watches media entertainment whenever possible. His favorite is a serial called The Rise and Fall of Sanctuary Moon. Do I have a Rise and Fall of Sanctuary Moon tee shirt? Umm… yeah.

That’s why when I finally recovered from my injuries (car wreck) enough to drive last January (2025), I put on a Murderbot audiobook, opened up the sunroof, and placed my emotional support chicken on the passenger seat next to me. I can do this, I told myself! I did it, channeling Murderbot every single time I stepped into the car again until I had moved past the trauma and was a confident driver again.

I would have taken a cat with me if I could have. Mateo, in his January winter coat, declined.

That was how the year 2025 started. I still listen to one of the audiobooks in The Murderbot Diaries series every single time I go out in the car. The last year was just epic in its awfulness. It was difficult on all fronts, and it felt like I just couldn’t catch a break all year long.

My scleroderma flared with new, significant complications that just kept coming. I had tendonitis for months. I developed bacterial overgrowth in my GI tract (SIBO) that stole my energy as I steadily lost weight for months. My cat almost died. My sister died. My son died. I had a serious fall and caught covid at the emergency room. In the aftermath of my covid infection, I developed dysautonomia and new cardiac symptoms that kept me close to home and on oxygen more days than I wanted to admit to. For a couple of weeks, I mostly stayed in bed and on oxygen as moving around just a little caused dizziness and chest discomfort. Did I read Murderbot while I was bed bound? Of course I did. Finally, as 2025 came to a close, I realized that most of those symptoms were much better and that my heart was settling down.

My son’s fingerprint and a bead that he gave me for Mother’s Day.

There is a media serial mentioned in one of the Murderbot books called Cruel Romance Personage: the title, an approximate translation from an ancient language, puts Murderbot off so much he has never watched it. One day I realized what a correct translation would be. Cruel Romance Personage would be more correctly called… Heartbreaker. That is the perfect description of 2025: Heartbreaker.

While I was struggling, I bought lots of new pillows. Hannah has claimed them.

I finally got into the office to see my cardiologist last Monday. We talked about new treatment options. We talked about quality of life decisions within the context of a fatal health condition (PAH). We talked about resiliency. I asked if he thought that my heart had been damaged by my covid infection. Probably not, in his opinion, since I had recovered. The more likely scenario was that I had sustained heart damage from Broken Heart Syndrome, and I am now well on the way to recovery. I have follow-up testing in a couple of weeks.

Of course. How on point for 2025.

I’m supposed to avoid stress. (Ha. Are you listening, 2026?) What am I doing with my time? I’m knitting, reading, and weaving of course. I’m learning new things, I’m picking up new causes. I’m producing new things. I am moving forward.

I am finally weaving my overshot placemat.

Goodbye, 2025. You were a Heartbreaker.

And I am still here. Bring it, 2026! Let’s go!!

Updates from the Knitting Front: Mitt Cycle

I’m in the part of my new sweater (another Weekender Crew) that is just stockinette all the way with a slipped stitch every now and then. I’m alternating skeins so I don’t get too much pooling, but the work is still… kind of mindless. Not mentally challenging. Okay, I am bored. No creativity in sight here, even though I want to get the sweater done… eventually. To make things worse we are experiencing unusually warm weather here in the Denver area and I’m not wearing any of my sweaters. I stuffed the sweater into its bin, parked it on a shelf, and started on some small products.

I decided to start on the mitts to match the grey/dusty purple sweater that I just upcycled. Yay. Let’s do mitts, kitties!!!

I decided to make a mitt that offered some options. It has a ribbed top that should go under the lace on the sleeve okay, and then a little panel of lace to match the ones on the body of the sweater. At the edge by my hand is a picot edge that matches those of the lace on the sweater. Cute, right? Sometimes I want a mitt that comes way down over my hand, almost to my knuckles, so I didn’t sew down the picot edge and knitted a long inner lining that can be pulled out. The final bind off is I-cord, giving a smooth finish to the bottom of the mitt. Yay! I like this mitt a lot. Did I cast on to start the second one right away? Well… no… that would be boring, right?

I pulled out the cat arm warmers because they are kind of the poster child mitt for NOT BORING, right? Over the last three days I got those little mice knitted in, and then I did the paws. Yikes. The paws required 4 colors of yarn for several rows. NOT BORING!!!! I learned a few things about yarn management while working on these, and in a nutshell, the most important one is to cut the yarn off the ball so you have a length of color that you can easily pull through tangles with the other colors. It is a lot easier to catch floats when you have a manageable length of yarn with no ball of yarn in sight, too. The knitting was really slow and kind of a nightmare until I figured that all out, but the last half of the paws went pretty quickly. Do you like the paws?

They look that way because that is what Hannah’s paws look like! Cutest toe beans ever!!!

Like everyone else on the planet I have been reflecting on the last year (thank heavens it is finally over) and thinking about plans for the next one (goals are good, right?) It’s a lot, and it definitely involves lots of yarn and books. As I planned this post I thought about what has been going on lately in my life and the world around me, and I finally thought about a plant that I brought in from outdoors this fall. It was a beautiful bougainvillea when I brought it in, bushy with lush green foliage and not a bloom in sight. I thought about leaving it outside but I finally dragged it into the dining room in front of a large window. Over the next few weeks every single leaf on the plant fell off. “Are you kidding me,” I asked the plant. “One little shock to your system and you give up the ghost?” Yes, I do talk to my plants.

The plant has replied by putting out new growth and blooms on every single little branch. It is literally covered with the tiny green buds of new growth, and the blooms, just now starting to grow out, are going to be something else. This plant is going to look amazing in just a couple of weeks.

There is a lesson here, somewhere.

May you all have an amazing New Year.

PS: I bought a new loom!!! Also, dysautonomia continues. May I present to you Crazy Heart 2026.

The Scleroderma Chronicles: Adventures with Dysautonomia

I caught covid for the first time last summer, and I continued to test positive for almost a month. What a mess. As I slowly recovered, I simultaneously felt better symptom-wise than I had in quite a long time while also developing new symptoms that are now creating struggle.

That sounds kind of crazy, and I probably should unpack things a little. Let’s start with the better, okay?

Hannah: I wonder what she is thinking about all the time…

Last October I had a terrible flare of symptoms that caused extreme joint pain, fatigue, brain fog, digestive issues, and… I WAS UNABLE TO KNIT FOR MONTHS!!!! I struggled to read. It was hard to do even basic things. My GI tract was in full revolt. I began to wear knee braces every day, pulled out the walker, and pruned my diet down to a few reliable items that were safe to consume (lactose free yogurt, I’m talking to you!!) I began to lose weight at a steady clip of a pound a week.

The hand under the hot pack was last year, and you can see the damage that was left behind on my current hand on the right. Last year my rheumatologist tested me for lots of things and I don’t have gout, or pseudogout, or rheumatoid arthritis, or any other thing except common osteoarthritis: no signs of inflammatory arthritis. I thought that was crazy talk at the time, but it’s hard to argue with negative test results even though I feel like I am dealing with obvious inflammation (swollen joints too sore to touch, right?). Anyway, after a year of struggling to knit or even type, my symptoms went away as I recovered from covid and I have been knitting up a storm (well, sweaters, actually, but you understand what I mean). It has been great. I can knit all day if I want. I can literally stay in bed all day, knitting happily along, ordering in groceries and enjoying my books… in bed. I am full of creative energy and am making tons of plans that involve my sewing machine and the looms. I’m wanting to buy another loom (that I can use in bed). Really, things are going great. Fabulous. I’ve even restarted my physical therapy routine, and my mobility has improved.

Oh… why am I in bed? Well… in the wake of covid I have developed worst dysautonomia. I struggle to control my body temperature. My blood pressure crashes when I eat. My heart rate goes bonkers without warning. I’m too cold all day long, and then I can’t sleep because I’m too hot. “I’m so sorry,” said one of my doctors. “This is very difficult to treat or control.” Fabulous. I do want to point out that many of my symptoms are greatly improved, my latest lung testing showed even more improvement, and I feel stronger than I have in years. The hope is that I will get better in time, and in the meantime, the cats are happy to hang out with me as I fuss around the house.

I was just sitting and reading when I got very dizzy suddenly and sure enough, my stupid heart decided to go into overdrive. Another adventure in dizziness caused me to check my blood pressure; for me, that is very low pressure. After another 2 hours I was back up to 128/72 and feeling more like myself. My doctor has advised me to just eat little snacks all day and to drink lots of water if I eat an actual meal.

Scleroderma, this is not funny at all! Oh, well. At least I can now knit and read…

I do want to back up to my bad-boy hands that gave me such a terrible time for most of the year. When I saw my rheumatologist in November she checked my x-rays from last year and then took a long look at my wrists and knees. My wrists are significantly worse than they were a year ago (but causing minimal problems at the moment… go figure) and she decided to order up some specialized testing to take a better look at the joints. Today I drove to downtown Denver to get specialized ultrasound imaging of those wrists. The technician was just wonderful, and she explained what we were seeing on the screen as she stopped to take pictures. There was a lot of obvious damage, fluid in the joints, and calcium deposits in tendons. “You’ve really been going through a lot,” she said. Finally, some validation. It was hard to not feel hopeful as I walked out of the clinic. On the way back home, I stopped at my favorite yarn store for a little yarn therapy action, and that was when the day turned into a “Thoughts on the Night of the Last New Moon” post.

In a nutshell, this is my situation. I feel better, and I am happy, but I am dealing with significant difficulties because my autonomic nervous system is refusing to behave itself. There is no easy fix. My joints are a major ongoing problem with no end in sight, because I can’t do many of the traditional remedies because of my scleroderma. I want answers! I want cookies! I want yarn!!

I walked into the yarn store.

The first thing that I see is a stack of my favorite cookies!!! Yay! I put four boxes into my shopping bag.

Then I saw great yarn that I needed to have. Yep. Into the shopping bag they went with reckless abandon. I want these yarns; my stash has been feeling a little peckish. Obviously, it also needed to be fed. Then my phone toned the sound that told me an incoming text had just arrived, so I sat down on a loveseat right in the middle of the DK weight yarn section and read the message: the radiologist had already read the imaging from my wrist ultrasounds and the results were available.

Active synovitis of the joints in my wrist. Inflammatory arthritis. Ironic, since I’m feeling pretty good at the moment with minimal pain. I wonder what that wrist would have looked like a year ago. It is such a huge relief to finally have a lab result that validates what I have been telling my doctors (and experiencing) for years. There is value in sticking to your guns and asking for more testing. Evidently this type of imaging is new, and it identified the problem that the standard imaging techniques failed to see. I don’t know what can be done to help me, but the relief is immense.

As I drove home, buoyed by the cookie haul, the shiny new skeins of yarn, and a sense of success and validation, I took a different route, passing by a large lake just south of my home. In the sky above me a flock of white pelicans wheeled in the sky, huge white birds with black bands on their wings. My heart soared with them.

More little glimmers:

Through the entire outing my stupid autonomic system behaved itself and I didn’t get dizzy even once!! 🙂
I delivered chemo hats to the infusion center at the facility where I had the ultrasound done. I have a little collapsible wagon that I use to roll the bags of hats to the department were they need to go. People laughed and joked with me as I rolled through the hallways (one lady insisted on pulling the wagon for me on my way in), adding to the overall good feelings of the day.
Remember me mentioning last spring that I was following some bald eagles in Big Bear, California online? Every day I checked the eagle cam to see if the chicks, Sunny and Gizmo, had taken their first flight yet. This week the parent eagles, hard at work preparing the nest for the upcoming chick season, were visited by 2 juvenile bald eagles who in high probability (because of the behavior all the eagles are exhibiting) are their girls from last season: Sunny and Gizmo. It is just wonderful to see them back even though the parents aren’t going to let them come near the nest much longer.
It really is the last new moon of the year tonight.
The interstellar comet 3I/ATLAS is zooming past earth tonight. It has been fascinating to follow over the last few months as its behavior has led to loads of speculation and lots of data collection. Safe travels, little guy.
This isn’t a glimmer, not really. We are in the middle of a high wind event that has forced communities to shut down west of me and the power has been cut to those residents. I feel grateful that there hasn’t been a fire since the risk is enormous at the moment, but I feel bad for everyone impacted by this. Thankfully, we are also experiencing record breaking heat.
I fell and injured my right knee last summer. It still hasn’t healed, and it is getting a MRI next month. Fabulous.
I am planning another post about the yarn and knitting.
Don’t you think that I should treat myself to another simple loom that will be easy on my wrists?

Mateo: Don’t you think that my silver ruff is a glimmer?

Thoughts on the Night of the Beaver Supermoon

The supermoon just cleared the trees behind my house. It is really bright tonight, shining through my window, joy from the east. This moon is both special and hilarious at the same time: the Beaver Supermoon.

Oh, we have beaver here in Colorado! I used to go with my children at dusk to a local state park looking for them in a pond with a beaver lodge. The kids and I have seen adults and youngsters (kits) over the years. Sometimes they were in the shrubbery by the water, sometimes swimming across the pond, and I’ve even seen one chomping on a tree. I’ve accidently startled them (those tail slaps on the water will get your attention), and I’ve glimpsed them swimming across the water with a branch in their mouths. One summer we could see the drag marks in the wet earth as large sections of trees were dragged down to the water; these woody treasures provide both food and building material for the lodges and dams. Beavers are pretty special as their work in waterways create essential habitat for other species. This moon gets its name from the increased activity of beavers preparing for winter. It is also a larger moon this month, hence the name Beaver Supermoon.

This poster was on the wall in my classroom for years!

I’ve been simultaneously busy and stalled out lately. I have finally recovered from the absolutely horrible flare of never-ending tendonitis that forced me to abandon my knitting for almost a year. This is what my right wrist looked like last year at this time.

I tore the house apart as best as I could hunting for painkillers that I could take with this one!

The x-ray report after this adventure had the word “severe” sprinkled throughout it. My rheumatologist tested me for gout and pseudogout: both negative. She did write me a prescription for emergency prednisone and painkillers in case this happens again. Then the flare dragged on, and on. Then there was the car wreck and other adventures. I kept hopefully buying more yarn, and stockpiling new patterns, hoping that someday I could return to knitting.

Two weeks ago the pain finally stopped and I started knitting in earnest again. Look at what I managed to accomplish!!

My Extra Lite Bright is off the needles, finished and blocked. This sweater will become a layering staple for me this fall.

And just like that, I stalled out, consumed by endless yarny possibilities. I have all of this yarn! I have all of these dreams of new sweaters dancing around in my head; so many possibilities. What should I knit?????

As fate would have it, I also finished a book on the same day that I took that sweater off the knitting needles. Help! Double indecision!!! So many books waiting for me on my Kindle. Help. I’m on fire to get going, and unable to make a decision. Help me Supermoon, help!!!!

That’s how I ended up spending the day as busy as a beaver, kitting up yarn with patterns to make new sweaters. Yarn was wound, and a sweater was cast on… but I have two more sweaters that I have located needles for and I’m going to cast them on too. Three sweaters at once? Sure. Why not?!

The grey/pink yarn combo will become a Renaissance Sweater. The yarn in the middle (there are 5 colors there) is destined to become a Colorica cardigan. The yarn on the right has already been cast on and is becoming an Alchemist Pullover. There are some kits for more sweaters, but those are the ones that are seeing action right away. Why these three? Well… one is colorwork, one is a cardigan that will involve some lace and purling, and the third is just too cute to not get made right away. My hope is that no matter what my hands and wrists are up to, I will be able to get some knitting done.

Then there are the books. So many books. If I’m knitting three sweaters at once, maybe I should have several books going at the same time too. In that spirit I am reading and listening to all of these.

I’ve started reading Buckeye, listening to The Wedding People, and I’m pretty sure that I need a little Three Pines action right away, so it is going to be in action soon, too.

There are several other books nagging at me. I told them to go hang out with the yarn stash overflow. Still, they call to me. The yarn calls to me. I have fought my way through the indecision of making choices when surrounded by great possibilities. Is this what beavers feel when faced with a new stand of aspen? Whatever. I have made the decisions, I have made a start on the first sweater and the first books, and like the beavers that gave tonight’s moon its name, I am full of purpose and I have big plans.

There is a lesson here. A year ago, I was in a terrible flare, unable to knit or even read. The best I could manage was an audiobook, and even then, I had to play it over and over as I had trouble concentrating and following the story. I sought help, I tried new drugs, I stuck to my special diet, and I did my physical therapy. I came through that time, and now I am here, shining bright again. Just as the moon returns to full force at the end of each cycle, I have managed a comeback too.

In my excitement over the knitting and books I haven’t forgotten the chemo hats, port pillows, and zipper pouches that I also have to get done. Saturday, I get to meet up with all of my friends again for a sewing extravaganza to produce more zipper pouches, and one of my friends wants to take the three quilts that my sister started; they will go to a program for children getting their first bed. Who knew that this was a thing? Like the beaver, I hope that my work will ripple out and bring change in my community around me, supporting lots of new life.

Shine on Beaver Supermoon. Shine on.

The Scleroderma Chronicles: This is World Scleroderma Day!

A couple of weeks ago I went in for a routine blood draw at my local Kaiser clinic. I gave the phlebotomist my ID card and told her my name and birthdate: for some reason they like to verify these things, right? Anyway, what happened this time was… she exclaimed that didn’t look my age. (Well, yeah. That may be one of the bigger red flags for scleroderma… no wrinkles.) “It’s just my disease doing that,” I assured her. “I really am that old.”

This lady wanted to know what I had done to get rid of the wrinkles. She wanted this magic wrinkle remover too! I carefully told her about scleroderma. “I never heard of that!” she said. Still thinking that I was a lucky person, she drew my blood and I got out of there. I would be happy to have every single wrinkle that I have earned over the years, but no… I have scleroderma. The systemic form with limited skin involvement. Lucky me.

I do have wrinkles around my chin and mouth, but I was wearing a mask during the interaction with the lady at Kaiser. I had to go on oxygen this day (I have lung and heart involvement) and you can see the swollen tendons in my hand and the tight skin over my knuckles.

That’s why there is this thing called World Scleroderma Day. This is a complex autoimmune disease with illusive symptoms (brain fog… trouble swallowing…GERD…swollen fingers…trouble breathing sometimes…fingers that suddenly lose circulation and turn white or blue…) that make the disease difficult to diagnose without specialized testing and evaluation by a scleroderma specialist.

Systemic sclerosis (the form of scleroderma that I have) is thought to start with some event (still unclear) that triggers the formation of antibodies that target specific molecules the nucleus of cells. These antibodies lead to damage in blood vessels and their linings; the damaged blood vessels release chemical signals that trigger a cascade of events that impact other cells of the body. Some cells are related to inflammation. Other cells are tipped over into forming uncontrolled scar tissue (fibrosis). Here is the problem: the tissue engaged in fibrosis is all of the connective tissue. What is connective tissue, you ask? Think of all the ways a person is held together. Tissue that makes your skin stretchy. Tissue that holds your muscle fibers together. Tissue that makes up your tendons, ligaments, and the structure in your joints. Tissue that holds your intestines, heart, kidney, and lungs together. The cartilage in your ribs. All inflamed, under attack, and forming thicker and thicker layers of scar tissue. Some of this damage causes calcium deposition. Unobservable from the outside, the patient is slowly hardening inside. The most obvious symptoms is the skin thickening and then pulling tight over time.

Scleroderma, and especially systemic sclerosis, has the highest fatality rate of all rheumatic diseases. Did I mention that there is no cure? There are treatments for complications that develop like pulmonary arterial hypertension (PAH) and interstitial lung disease (ILD), but they, like the immunosuppressant drugs that many of us take, mostly stabilize and slow progression. (Dear Kaiser lady… that’s why I was getting a blood draw. The drugs that I take are risky, and my doctors need to make sure my kidneys and liver are tolerating the meds okay.)

So, what is the purpose of World Scleroderma Day? It’s to highlight this condition that impacts more people than it should even though it is rare. It’s to raise awareness of the symptoms and hopefully aid in other people getting an appropriate diagnosis. Maybe shining a spotlight on scleroderma will help in getting funding for research, treatments, and even a cure.

Sunflowers are the international symbol for scleroderma.

Here is where you can learn more about scleroderma, it’s symptoms, and treatment.

PS How was my blood work? Yay, doing okay!! Kidney function is up into normal ranges again!!! How old am I? I was born in 1951. 🙂

The Scleroderma Chronicles: Thoughts on the Night of the Strawberry Moon

There it is, the Strawberry Moon. I snapped this shot around midnight last night while the kitties chased moths on the catio.

It’s June. I can hardly believe it. June is Scleroderma Awareness Month. June is the month of thunderstorms and tornado watches. June is the month of the miller moth migration (Mateo’s favorite time of year!) June is the month that Hannah came home to live with me. June is the month, year after year, that my scleroderma begins to improve after a long, cold winter. This year June has been just great! After a very rainy May hot, sunny weather finally arrived this week and the yard began to burst into bloom. First, let me show you the weather…

Crazy weather May!! That is hail on the catio, all of that rain appeared in my pot on the deck (you can see it in the first picture… the pot was partially covered by the table above it…) in just 48 hours, and then there was an exciting outbreak of tornados just east of me. Whew! In the breaks between the storms I managed to give the lawns their first mowing of the year, and I made great progress pulling weeds out of all of my gardens. I kept thinking of a saying someone said to me recently as I worked in the yard and gardens: How do you eat an elephant? One bite at a time. How do you clear a weedy wilderness? One clump of grass at a time.

Look at how great the yard is starting to look! The grass is growing like crazy after the deep soaks, and there is lots of wildlife. I managed to get the catio all finished, and the cats and I are outside every day now enjoying the show and soaking up some sun.

Mateo is enjoying the emergence of a new, tiny baby bunny!

So, here is the crazy thing. I have been struggling big time with my symptoms. I have been unable to knit (or type for that matter) for several months now. I rely on the knitting to help me keep my hands functional, and also for mental health reasons; the loss of knitting has been hard. Even cranking the knitting machine has been too much for my healing ribs and sternum. My other joints are so bad I have spent most of my time moving a heating pad from joint to joint trying to manage the symptoms. My heart has been misbehaving again, and my lungs have been unhappy. It has been a hard winter, and I have to admit, I’ve been concerned that I may be through the tipping point and on the downward slide of my scleroderma journey.

Then June arrived.

Like magic, after every morning in the sunshine drinking my latte, after every afternoon clearing out a small section of the gardens, I have been getting slowly better. My joints are recovering. My heart has stopped having tachycardia events. My oxygen levels have improved. My hands and wrists are much better. I am writing this post. I am better. I am knitting again. I’ve started a simple summer tee in a happy pink yarn, and my wrists are letting me knit for an hour a night. I usually bristle up when people suggest that I can just get better with some sunshine and exercise, but in this case it did help.

Other fun that I’ve been enjoying on the internet is the journey of Sunny and Gizmo, two Bald Eaglets that fledged early in June from their nest by Big Bear lake in the San Bernardino mountains in California. Sisters, the two have remained with each other in various trees and have returned to the nest several times. The other fun was the adventures of Ed as he ran free in Tennessee for a week. Yay Ed!! You know that I had to cheer the zebra running wild!!

I do hope that you saw the strawberry moon. It was a happy, bright object in the sky, lighting up the back yard and the bunnies chasing each other over the lawn. The moths entertained the cats, and I sat in the dark with them on my swinging patio chair last night feeling pretty upbeat. This full moon was the last of the spring; what is coming now is the heat of summer. Usually, I kind of dread the summer heat, but last night I felt absolutely sure that I was up for the days to come. How do you eat an elephant? One bite at a time. How do you knit a sweater? One hour at a time. How do you face down the scleroderma monster? One beautiful day in the yard/catio at a time.

This is scleroderma awareness month. I went to a scleroderma conference in Denver last month, and this Saturday I will go on a fundraising walk with all of my sclero-friends. I plan to rock the teal! Bring it sclero-monster! I am ready for you!!

Friday is Hannah’s gotcha day. She is now 5 years old.

Last night I started reading the latest edition of Scientific American Magazine. The cover article is about new research that shows… wait for it… sunshine can suppress the immune system and make autoimmune diseases improve. Look at that! I’m kind of thinking that happened to me over the last few weeks. Evidently, it is a balancing act: sunshine can also make things worse. Yay! Once again, I get to use myself as an experimental animal as I figure out how much I can tolerate. 🙂

Zebra running wild!!

Hannah and the CoalBear: Shipwrecked (on Sea Glass Island)

Hi. I’m Hannah,

It has been a long time since I’ve given an update on the Mother of Cats. I know, I know… things have been going on that are hard to explain, and the Mother of Cats hasn’t been fun AT ALL lately. Let’s start with the strange things…

The house got painted! There was complete chaos around our house that went on for days! Do you see my expression when I saw one of the worker men in the window? They put plastic over all of the window, and there were all of these bumps and strange noises, and I totally was exhausted keeping the CoalBear calm through all of it. Whew. Then the painters finally went away, and the next problem became apparent…

THE CATIO WAS GONE!!!!!!

A cat tantrum is an ugly thing. Mateo is just a little cat, but he can be a little heartbreaking too when he doesn’t get his way.

She works really slowly, but the Mother of Cats has been constructing a new Catio for us. I keep urging her to work faster, but does she listen to me? She takes a day off for every day she works, and at the rate that she is making progress, it will be snowing before this gets done. The baby bunnies will be grown up and gone. The baby robins will be grandparents. I will be too old to appreciate my days out in the sun…

Mateo really, really wants to go outside to have a chat with this baby bunny…

With all of the outside work going on the Mother of Cats hasn’t been knitting very much. She did manage to get one pair of socks done, and then she made a new chicken that she took away with her on one of her trips to the doctors. Here’s the chicken.

The chicken and a couple of the babies went to the Pulmonary Function Testing lady to use with her patients. Mateo wanted to keep it for us, and I did mention that it would be kind of nice if she stuffed the little chickee with catnip, but did she listen to me? No. No, she did not! They went out to the car with her, and they stayed with the PFT lady. I sure hope that those silly patients appreciate the chickens, and if they throw the little one around that would be great! I’m pretty sure that they would like catnip, too.

So, that’s what’s been going on. NOT MUCH KNITTING! The Mother of Cats is still unable to cast on her new sweater, and while she spends time moving yarn around into interesting combinations, she hasn’t cast on her sweater. Shipwrecked. She is shipwrecked. When she isn’t fussing around outside (and we’re stuck INSIDE looking at her through a window) she is laying around with a heating pad on her knees and braces on her wrists, dreaming about prednisone, and looking at yarn to buy online. Shipwrecked. She isn’t even using her knitting machines, which at least was a little fun. This is so bad even I’m dreaming of yarn. And tuna.

This is Hannah, signing off.

Notes from the Mother of Cats:

Yep. My hands are total crap at the moment. My rheumatologist ordered some x-rays and the word “severe” appeared several times in the report. My wrists are the worst.

My knees aren’t doing very well, either, and my rheumatologist is exploring options with me. MORE DRUGS!!!! I’m a fan right now. Hannah wasn’t kidding when she said I was dreaming of prednisone. Steroids injected into my knee sound really good right now. The good news is that my lungs continue to improve, and the red flags that were raised at the time of the car wreck CT scan in December have resolved in favor of nothing serious. Yay! The changes in my lungs have disappeared, and the growing “mass” in my thyroid turned out to be a cyst. The bad news is that the follow-up CT scan in March showed that my broken ribs and sternum (fractured after all… not a shock) were struggling to heal, and I was told to lay off the knitting (and especially the knitting machine) FOR A FEW MONTHS!!!! Obviously, these medical professionals don’t understand that I need these things for my mental health. Sigh. Mateo isn’t the only one wanting to throw a tantrum lately. I don’t think that my doctors would be happy about the catio construction effort, but it is kind of an emergency!

The emotional support chicken was a huge hit at Kaiser pulmonology, and they will let me know if I need to supply them with more of the little chickees. My pulmonologist mentioned that the kids with asthma who come in for testing would love a little chickee… heal faster ribs!!! The chest pain has stopped even though I have been swinging a hammer this week, so I’m pretty sure that knitting again is right around the corner.

So… I can cast on Sea Glass, right?

<Hannah: send tuna!!>

Hannah and the CoalBear: Lazy Mother of Cats

Hi. I’m Hannah.

I would like to lodge a complaint against the Mother of Cats!!

The world outside has changed over the last couple of weeks. The sunshine is bright and warm; I love to sleep in the sunshine, don’t you? There are more squirrels than usual chasing each other through the trees out front, and sometimes they even come right up to the windows. The bunnies are spending lots of time in the yard where the CoalBear and I can see them, and there are birds again. Lots of birds!! All of this change is really exciting, and the CoalBear and I just want to spend all of our time playing. So, is the Mother of Cats spending all of her time entertaining us? Giving us tuna? Letting us outside to play in the sunshine and delivering the kitty cookies right on time?

No. She is not!

The Mother of Cats has been sleeping more than usual (and I’m a cat, so believe me, that is a lot!), reading her books, and knitting. Knitting isn’t too bad if we get to play with the yarn, but nope, nope, nope… once again she is not sharing her toys with us like she should.

Mateo the CoalBear is doing his best to play anyway! He loves the needles, I perfer the yarn myself. He is kind of a weird kitty…

The Mother of Cats has been listening to an audiobook during some of her knitting, so I get to listen along with her while she knits and I help with the yarn management.

This is the book that we listened to last week.

Imagine a man who dreams of waves of energy zooming through the air from a spark of electricity to a device that can detect the waves; the device is like magic, letting messages travel from one place to another without wires. He dreams of all the changes that the wireless messages can make in the world, and also about how much money he can make from the business that installs and runs the devices that make this possible. His name is Guglielmo Marconi. Pretty cool, right. (Can I have some tuna now… all this typing is making me hungry…) At the same time in history, there is a man who works creating and selling “cures” for illnesses. He is married to a woman who is very bossy and demanding (CoalBear… I’m looking at you…) and one day he snaps, kills her, and tries to escape with his true love to America on a ship. His name is Hawley Harvey Crippen.

I have to be honest; I played a lot with toys and this fortune paper from a Chinese cookie while the whole book thing was going on…

Are you tired of the story yet? It gets really exciting now. Chief Inspector Walter Dew of Scotland yard finds the reminds of the murdered wife. The hunt for the escaped murdering husband with his girlfriend becomes a big deal in the newspapers, and the captain of the ship realizes that two of his passengers are the people being hunted by Scotland yard. The captain sends a message back to shore using (what else???) his Marconi wireless device. Chief Inspector Dew boards a fast boat and the chase across the Atlantic Ocean is on, with coordination between ships made possible because of … wireless messages using the Marconi system. Marconi messages keep the press updated, and suspense builds as the public hangs onto every new update and intercepted message reported in the news. Whew! My whiskers were just a tingle listening to all of this! Chief Inspecter Dew overtook the ship with the murderer, and he was apprehended before he could land in Canada. Because of the publicity, Marconi’s business was secured. What a story. What a book!! I absolutely need some tuna right this minute!!!!

Look at how much the Mother of Cats got done while she was listening to the book and knitting.

So that has pretty much been the last two weeks. Sleeping, knitting, and listening to really interesting books. I like the yarn and the books, but I do hope that the Mother of Cats will stop being so lazy… Mateo and I have needs, right?

I’m not lazy… I’m a cat. I’m supposed to sleep all day.

This is Hannah, signing off.

>^..^<

Notes from the Mother of Cats:

The sweater that I’m knitting is the Winter Albina sweater by Caitlin Hunter. I’m really pleased with how it is working up.
I’ve already started another Eric Larson book: The Demon of Unrest.
I’m in another scleroderma flare, and I did go see my rheumatologist for help. I am now in possession of an emergency pack of steroids and narcotics. Whew. It’s good to have an emergency pack!
I’m doing better lately, but the cats are still kind of disgusted with me.
What was that Chinese cookie fortune that Hannah was playing with?

Friday, February 28th, was Rare Disease Day. I found that I was ~~too lazy~~ unable to write another post for the day, but here are some nice ones that I wrote in previous years.