Scleroderma – Yarn, Books & Roses

The Scleroderma Chronicles: Thoughts on the Night of the Summer Solstice

Yeah. Life has been busy lately. Last week I managed three appointments for testing and office visits, and then I visited three different Kaiser facilities to acquire the new prescriptions. All of this was done while keeping an eye on the barometric pressure; for half of the visits I had to wear my oxygen. I’m a little sad, more than a little exhausted, and somewhat concerned that all the test results are pointing at my heart. Bad heart, bad. It isn’t quite clear what is going on, so my cardiologist is systemically eliminating possibilities as we edge closer and closer to a return to the cath lab. Oh, boy.

Here is the thing about going back on oxygen. My portable oxygen concentrator only supports me for about three hours. For the most part, I am now homebound. Sounds sad, right. I have been loading up on happy crafting projects that I can do at home, but it is hard to face the isolation of going back into virtual lockdown again.

Of course, I’m not really alone. The cats are great companions.

Then my niece contacted me to ask if I would like to join her is a collaborative writing project online. Yes!! Yes, I would. You guys, we will be writing a collaborative book in the epistolary novel format. What a gift that she came up with this right now!

Then a friend asked me if I would like to join her in a shawl KAL being sponsored by a local yarn shop in town. Yes. Yes, I would love to do that with you!!

That bright pink yarn to the right in this picture will become the shawl.

Then my cousin, the fabulous quilter who produced this Rainbow Zebra Quilt for my support group mentioned that she has the patterns for the quilt that I just ordered to start working on. She is considering joining me in the sewing of the quilt. How fun! We will be doing it together even though we live at different sides of the state I live in.

The Wind in the Whiskers Quilt Kit is from Stitchin’ Heaven, and the package is out for delivery as I type this post. My cousin is still considering hunting through her fabric stash, or if she should order the identical fabrics from the shop where I bought the kit, but we are almost certainly going to launch the joint sew a quilt together project. Isn’t that great?

In the meantime, I have been knitting away on my new Cloudbreak Tee. Look at my progress!!

So here I am, stuck at home connected to my oxygen concentrator machine, waiting for my cardiologist to contact me about the results of the emergency echocardiogram that I had last Friday, chilling out with the cats, working on my computer, and knitting on my sweater that uses the happiest color yarn out there. Alone, but connected to other people who reached out to me, connecting to me though things that I love to do, keeping me in the world that they still are able to move about freely in.

That that, scleroderma!!

Hannah: I’d like to connect to that moth up there!!

PS: How lucky am I? I have already been contacted by three people who are offering to drive me to the cath lab appointment if it happens, and another person is going to go with me to my next cardiologist appointment if things don’t sort themselves out soon.

PPS: Just as I was unboxing my new overlock machine, getting ready to sew fabric tote bags, the mayor of my city posted on Facebook that he was spending Friday nights at an innovative center that is designed to move people from homelessness to employed (and housed) independence. Here is an article about what he wrote. I contacted the head of my community service crafting group, and she is setting up a meeting to see what we can do to help. I’m pretty sure that they can use some of the fabric totes with matching zipper pouches…

Did I mention that I am happy these days?

No matter what, choose to be happy!!

How big is the Zebra quilt? Pretty darn big!

Hannah and the CoalBear: June Adventures

Hi. I’m Mateo.

I’m trying to swat the phone in the Mother of Cat’s hand in this shot…

The last couple of weeks have really been busy. Wait until I tell you about all of the stuff that is going on around Casa Mother of Cats. Where should I start…

The new brick entryway to the bunny tunnel is working great. Sure, I don’t get to hang right over the opening so I can lunge at the net the second I see the tip of a bunny ear, but the tradeoff is… the little guys aren’t that afraid of me now. They come right up to the edge of the brick entrance and I get quality bunny watching time. I still think that I would have more fun chasing them, but the Mother of Cats is so mean to me…

Then this happened today! This squirrel decided to come right into the catio, so of course I had to charge up the corner post to meet him, right? Who knew that squirrels had a secret ~~death wish~~ desire to play with me? The Mother of Cats made me get down, but then the squirrel ran around on the ROOF looking for a way in while Hannah and I watched. Come on in squirrel, I can show you some fun tricks with my murder mittens…

Finally the squirrel moved on and the Mother of Cats brought us into the house. Why does she interfere with all of my fun? I mean she literally chases all of my potential playmates ~~meals~~ away before I can play with them.

Okay, enough of the adventures with stuff outside. I should mention some of the other things that have been going on around here. The Mother of Cats is knitting like crazy on her latest sweater, and Hannah really helps her with that. Look at all of the progress that she has made!! She also likes the octopus stitch markers! Do I get to chew on them? Again… no.

One of the Mother of Cats’ friends gave her two Cattasaurus donuts for us to play in. WE LOVE THESE THINGS!!!! We both play/sleep in and on these guys for a part of the day. I especially like to drag myself around in circles inside the grey one, and look at Hannah snoozing on hers!

I’m feeling pretty good about life these days. Great wildlife hanging around. New toys to snooze in. Some special hairball support (whatever that is…) cookies to eat. And… of yeah!! Wait until you see the new flag that is flying in the catio!!!!!

That’s me!!! Hannah is lucky that I share my catio with her!!

Well, that’s all for now.

I’m going to bug Hannah for awhile. Laters.

Notes from the Mother of Cats.

Life has been busy lately. The Scleroderma Walk was last weekend, and I really wanted to participate with my team the Rainbow Zebras. The walk was clearly longer than I could manage, so I finally bought a lightweight mobility scooter that I could put in and out of the car by myself. Check this out!

Did you see the emotional support chicken in my basket on the scooter? Here she is!

She was gifted to a friend in a care home after the walk. Chicken, get busy and support!!

This is Scleroderma Awareness Month, and trying to represent, my scleroderma decided to get pushy with the symptoms. What symptoms are these you ask? I’m still dealing with chest discomfort, shortness of breath, dizziness, edema, a partridge in a pear tree, … It is exhausting. In the last 7 days I have been to Urgent Care, the Emergency Room, and two specialist appointments. The moral of the story is… don’t answer the phone from your medical provider if you are too short of breath to talk. They tend to panic. After all of that testing and running around, they found… NOTHING wrong. Of course. Rainbow zebra here. It is something associated with my scleroderma, of course, and all of the normal causes of the symptoms like I am experiencing are not in play. (Can you hear a zebra braying in the background?) Thank heavens my cardiologist will be back in the office next week and maybe something that can actually HELP will be done.

Did I buy more yarn after all of this?

I also bought a new sewing machine and the kit to sew this very cute quilt. Hey… they said I have to stay home on oxygen, so I need to get in essential supplies, right?

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

Almost three years ago there was a blue supermoon in August; it was on the anniversary of my diagnosis, and I wrote about it then. I was feeling pretty good at the time… my concerning autoimmune pneumonia (SSc-ILD) was under control, I had just acquired my portable oxygen and new shoes, and I was full of plans to knit a new sweater. You can read that post here, if you like.

Tonight things are much the same, but also different in important ways. A concerning lung test result a couple of months ago triggered a round of emergency response drugs with follow-up testing. It now appears that my lung disease, always a concern, is stable. Yay! I, however, am not stable. I continue to deal with some concerning symptoms like dizziness, chest pain, shortness of breath, edema, and low blood oxygen levels. Oops. It is starting to look more and more like my pulmonary arterial hypertension (PAH) is active again, and there needs to be a medical response. My rheumatologist told me a couple of weeks ago that I would be returning to the cath lab to check the pressure levels on the right side of my heart. My cardiologist, who has wanted to start me on an additional PAH drug for a few months now, will no longer be put off, I suspect. Fabulous. These drugs always come with not so nice side effects. Of course they do.

And yet, just like three years ago, under a different blue moon, I am happy. Every day is busy, I’m brimming with plans for my beautiful yarn, there is new life around me, and I am… happy. I have an unusual response to bad news: I immediately spring into action to acquire beautiful plants and yarns. You might equate this with spitting in the eye of the monster. Yep. Thursday, when the latest testing made it clear that my heart was the problem, I headed straight to the local nursery and scored lots of beautiful plants. Take that, monster!!

I brought home large lavender plants (not cheap, but look at that plant!!), snapdragons, dianthus, and a bougainvillea to hang from the edge of the catio. I’m hopeful that bunnies will leave all of these plants alone.

I hung yard decorations on the fence. I tied the roses up onto the trellis. I made the baby bunnies a little entryway to their home under the deck.

Hopefully that brick doorway will calm things down in bunny-land as Mateo waits right above the bunny hole and triggers a panic response/chase across the catio every single time a bunny emerges from under the deck. Mateo is not happy with me right now, let me tell you. So far, I haven’t seen a bunny go in or out, but it is just a matter of time, right? I hope at least the bunnies will be happy!

As I planted and cleaned up this week, I was forced to prune some roses. Did I throw the branches away? No, of course not! I have a rose rooting experiment going right now at two different locations.

Hey, these are roses that I like a lot! The hot pink rose is from a large shrub along my driveway… I could use another one at that location! The lighter pink is an English rose called Princess Alexandria of Kent and just look at it!!! I have five different rooting efforts going, and I do hope to get another rose bush out of this!

Not to be outdone by roses, the one of the orchids in the indoor garden has decided to have… babies! These suddenly appeared on one of the blooming stems after the blooms all dropped off.

There it is, a baby orchid with roots, leaves, and even blooms.

These orchid babies have a Hawaiian name: keikis. I now have three of them appearing on one overachieving plant. How cool is that?

I have made a couple of outrageous yarn stops lately too. You know, when you get concerning news, it is best to load up on the pretty stuff, right? That’s my philosophy, and I am completely unapologetic about it. Look at this haul of superwash merino, silk, and yak yarn:

This yarn was on clearance. It would be criminal to not take advantage, right?

All of that new yarn has found a project. A couple of weeks ago a friend asked me to join in on a shawl MKAL. Ka-bam!! The four skeins of bright raspberry colored yarn had a project. Wool & Pine published a fingering weight version of the Alchemist Sweater: three more skeins found a home. The light grey with flashes of color is already warped onto a loom, and some other yarns not shown in the picture are destined to lives as socks, cowls, and wristers. I put aside a couple of hours every day in yarny project creation, and I’d like to believe that it is helping me manage symptoms.

So, there it is. I’m in a bit of trouble, there are new drugs and a mobility scooter on the horizon, I need to wear oxygen again when I’m out, but I am happy. My support network has already closed in around me, and I’m working out ways to handle my new limitations. My little world around me is teeming with life, my garden fills me with joy, and I spend my days immersed in beautiful fiber crafts.

It has been almost 12 years since my first diagnosis. I am in the 5th year following my dual diagnoses of SSc-ILD and PAH, and I continue to find ways to roll with the punches and to shine. I’ve been doing better than expected for a long time, and I keep thinking that maybe resiliency is related to finding glimmers in your everyday life. Every baby bunny sighting, every robin in the yard, every single new rose, all that beautiful yarn… glimmers and joy.

No matter what, choose to be happy.

Shine on, blue moon, shine on.

I’m on my way outside to check on you because…glimmer!!

The Scleroderma Chronicles: There’s been a little set back…

Okay, I have been gone for awhile. I’m sorry that I caused some concern for people. I’ve been contacted by a couple of people, and one (MR, I’m talking to you) has reminded me that I need to continue to check in from time to time…

Here is what is happening in a nutshell. I caught the flu, I got over the flu, I felt kind of good for a week or so, and then I began to get steadily worse. I was losing weight, sleeping around the clock, my hair was falling out, I hurt all over, and my oxygen was low. I had an appointment with my pulmonologist coming up, so I just hung in there. About a month ago I finally saw him and had my routine lung testing done.

Oh dear. The testing didn’t go well. I had a 20% drop in my ability to move CO2 gas from my lungs into my bloodstream. Not good. A drop like that is considered highly significant and set off some red flags. My lungs are in trouble, but there is a strong possibility that my heart is the underlying cause. I’m a patient with both interstitial lung disease (ILD) and pulmonary arterial hypertension (PAH), and the two, like the lungs and the heart themselves, are interconnected. My pulmonologist shot off emails to the other doctors on my team, prescribed three new drugs to treat the immediate problem (lungs!), and ordered up future testing to see if I make some recovery after completing the prescriptions. There were steroids involved, which is risky for scleroderma patients, but I was kind of out of options. Sigh. It took weeks for me to get this sick, and it will take weeks to see if I’m recovering.

These pictures are of my front ash tree. Three weeks ago there was a hard freeze, and the new leaves and buds on my tree all died. Feeling just awful, panting with chest pain, I keep looking sadly at the dead leaves hanging off the tree wondering if it was alive or dead. I began to call it Schrodinger’s Tree: simultaneously alive/dead, and only time would tell. I kind of identified with the tree as I dragged myself out to the catio for my morning latte. Then, as you can see, over the last 10 days the tree has gradually begun to regrow buds, and now it is covered with leaves. I also have slowly improved: no more chest pain, and the panting is much better. The weight loss has stopped, and my sleep is returning to normal.

Last week I went for a specialized CT scan of my chest to see how I’m doing now that I’ve completed the course of emergency response meds, and in another week, I will repeat the lung function tests. I’ve been warned to expect a trip back to the cath lab to measure the pressures inside the right side of my heart, as there is a good chance my PAH has worsened and is at the heart (see what I did there… ha!) of my struggles.

So… I’m kind of in limbo. In cases like these, I find it is best to knit. I pulled out my Weekender Crew sweater that had been languishing in a box under the bed, and slowly managed to knit enough to get it finished. Look at how cute the knitted fabric is!

I have also been buying yarn. Don’t these look like happy colors?

I have lots of plans for this yarn: a shawl, a sweater, a woven scarf, and then a knitted cowl and wristers set for the scleroderma charity auction. With yarn like this it is impossible to feel sorry for myself. I managed to get more (deep rosy pink) yarn wound for a new sweater, and a couple of nights ago, at about the same time that I became positive that the tree was going to survive, I cast on my new Cloudbreak Tee.

It’s going to be great, right?

So, here I am, knitting away, in a state of flux, waiting to see how all of this will turn out. I’m doing everything that my doctors are telling me to do, and I have gotten alarmed about some parts of the emerging treatment plan (there is some discussion about big alterations and new drugs…), but I am clearly improving, and in the meantime, there is… YARN.

Hannah: Be like a cat. Eat the best tuna you can find and then take a long nap.

As I told my pulmonologist… no one ever got better by worrying. Do the best you can, take your meds, and sleep like a cat.

I also told him that I’m not doing another lung biopsy!! He didn’t think I was funny…

PS: I have been looking for all the glimmers. The white pelicans have returned to Colorado. A litter of baby bunnies have emerged from under the deck. I went to the garden center and bought huge lavender plants. My catio is awash with potted flowers and the yard is full of birdsong. My trees are covered with feathery new leaves. The baby eagles at Big Bear Lake are getting huge…

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!!

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 Waning Cresent (Beaver Super) Moon

The bright moon that I watched rise through the trees to the east almost two weeks ago is now just a shining sliver in the western sky, invoking a glimmer of joy before it dips behind the Rocky Mountains. Goodbye, Beaver supermoon. You were really special.

I blogged about the Beaver supermoon here, and in that post I wrote about beavers, my burst of energy and surge of creativity as I worked through a pause and found new projects and books to read. I mentioned at the end about my community work making chemo hats. port pillows, and zipper pouches, and hopefully wrote: “Like the beaver, I hope that my work will ripple out and bring change in my community around me, supporting lots of new life.”

In the two weeks following that post there have been returning ripples and glimmers that were so intense that they were more like flashes of light akin to a lightning strike. Feedback that left me stunned and in tears. There’s a whole backstory here, so it will take a little to explain it all to you. Maybe you should grab a cup of tea and find some cookies. Ready? Here we go.

In 2014, after years of medical gaslighting, I was diagnosed with systemic sclerosis (a form of scleroderma) and Sjogren’s Disease. I was started on some medications, lots of tests were ordered, and just like that, my view of my future changed forever. I learned that there was a 50% fatality rate for my disease. I failed the first two drugs used to try to slow disease progression. Follow-up testing after a year showed that I had declined 27% in my lung function, and I was referred to palliative care. I was in grief. I began to compulsively knit. Overwhelmed, unable to cope with actually creating a garment that would fit, I made shawls. Lots of shawls.

I was moved to new drugs. I started a third immunosuppressive drug, one that was off-label and required a fight with the insurance company, and I began to slowly improve. Palliative care discharged me. I found more beautiful yarns to love, and more shawls to knit. The shawls began to pile up along with the number of diagnosed complicating conditions that were linked to my underlying autoimmune diseases, but I was okay; I had essentially knitted (and blogged) my way through grief, and I was now ready to take things on. I found new doctors who became collaborative partners in my care and faced down the monsters of new complications. Today I am much, much better than expected; my latest lung testing shows that my lungs have regained more function, and my PAH is under control. My cardiologist rarely mentions heart failure when he talks to me, and I am off oxygen.

As I got better, I began to knit sweaters. Lots of sweaters. I began to look for a home for the shawls. Last spring a friend mentioned the needs of patients at a rehab center in Estes Park, Colorado that she worked with. People often arrived there precipitously with little more than the clothes on their backs, and they needed warm clothes. She was thinking hats, mittens, and scarves, but I sent about 10 shawls.

I thought maybe someone would be able to use them.

Saturday, I asked her what had happened to the shawls. The rehab center has the shawls all displayed on quilt hangers that they installed, and patients take them to wrap up in when they go to meetings or whenever they need the comfort of yarny goodness. Instead of going to just a few patients, they are there for all, part of their recovery journey. Evidently, they are popular, and the center could use more. I was stunned, struck by a glimmer so intense that it was a bolt. I started crying. Those shawls, those things that brought me through a really bad time, are now doing the same for others. I had hoped that my work would ripple out a little, but this was so, so much more than I expected.

I have bundled up all of my remaining shawls, keeping only three back for myself, and I plan to send the rest up to the rehab center before the end of the year.

Shine on, Beaver Supermoon, shine on.

Footnotes:

Another glimmer: my son’s three cats were rehomed together to a wonderful lady who had lost a beloved cat. All three kitties are now happy in their new home, piling on and cuddling with her while she crochets in the evenings.

Look! Tachycardia!! I was reading a book when this happened.

My medical adventures continue, but after conferencing with my doctors following the latest round of testing, we have all decided to delay starting a third medication to treat my PAH (that’s pulmonary arterial hypertension if you are new to this blog…). That is kind of huge. I have SSc-ILD (interstitial lung disease associated with systemic sclerosis… do you see why they use acronyms?…), but I am not putting down scar tissue (fibrosis), and that is even more huge: it is rare to have one without the other. Do you see the glimmer? My prognosis for this condition, the leading cause of death for patients with systemic sclerosis, is stabilizing into the “she’s doing really well” column, and that is why we can afford to delay this drug.

My wrists and knee (the one that was injured in a fall this summer) concerned my rheumatologist, and she has ordered specialized testing, but all things considered, I am doing really well.

Glimmers and ripples.

The best two weeks ever.

Did you enjoy your tea and cookies?

The BioGeek Summer Reading List: Polio

Hannah hanging out with the summer books.

It’s been a kind of slow summer because… tendonitis… but I am getting a lot of reading done. I had moved some books into the craft room with the intention of reading them *someday soon*, and then just like that, this became the summer of nonfiction, disease book reading. Hey, I’m a BioGeek, and these books are actually pretty interesting. I had some idea of organizing the books into an order that made sense, but the topics kept overlapping so much I am just going to dive in and start talking about what I’ve been reading about and how it connects to me. Should I talk about the books from my days in the classroom? The book that made me start hoarding essentials in case of a pandemic? The book that made me aware of ebola? Hmmm… Let’s start out with the one that has a lot of personal connections to me and my family…

It’s August 14th, 1945. My mom had just arrived in New York City from Argentina, returning to the United States to visit her sister, a member of the Women’s Army Corps in Washington, D.C. I’m guessing that NYC was in an uproar that day, as it was the exact date of the end of World War Two here in the US, being Victory over Japan Day. For my mother, however, it was also the start of her involvement in another type of war.

Halfway across the nation, an epidemic of polio had broken out in the state of Illinois. There was a national call for nurses, and the American Red Cross contacted my mom, asking her if she could go. Here is the chart showing the dates of newly diagnosed cases in city of Rockford and Winnebago County, Illinois that year.

It was a big outbreak, and mom was one of many, many nurses and other health professionals who answered the call. Just like that, polio became part of the story of my family. My mother met my father when she was sent by the Red Cross to another potential polio outbreak in Albuquerque, New Mexico; he was a patient recovering from his service in North Africa when she met him there. The polio outbreak didn’t amount to much, but the romance did. 🙂 One of my first memories was getting a polio vaccine. I remember collecting dimes in a cardboard folder as a participant in the March of Dimes. I once was smuggled into the hospital by my mom, clutching an ornry yellow cat named Henry, to show him off to a woman in an iron lung; she had been in that iron lung for years and my mom had been sharing tales of Henry’s misadventures with her. Some of my classmates had had polio, and I knew people who wore leg braces. Much of my childhood was colored by polio. In my mind, polio was a terrifying, ever present disease that had gripped the USA.

I read Polio: An American Story a few weeks ago, thinking that it would enrich my understandings of the polio time that I had lived through. Boy, did it ever! There was so much that I didn’t understand about polio. It was an illness that emerged as outbreaks in communities with modern plumbing and higher levels of sanitation. The common understanding came to be that polio was a virus that was common in poor sanitary conditions, and most people exposed early developed immunity without significant illness. I did not see that coming! It was also not the most dangerous or significant disease in the US at that time, but it was one that felt terrifying. The president, Franklin D. Roosevelt, was a polio survivor. The fundraising campaign to find a cure for polio, a vaccine to prevent illness, was boosted by this president and the national spotlight that he brought to these efforts. A private organization, the National Foundation for Infantile Paralysis, provided for the care and rehab of polios and funded the development of the polio vaccines. The organization later became known as the March of Dimes: the very entity that I once collected dimes for. The vaccine trials used children, 2 million of them, as guinea pigs (!), and there was significant conflict between the two major researchers who used different approaches: Jonas Salk and Albert Sabin, and the battle became political. As vaccine production ramped up, lessons were learned about product control. In many ways, the national drive that existed during WWII was continued in the drive to conquer polio. The first vaccine, developed by Salk, was announced in March of 1953 to national celebration.

This book was really engaging, and I leaned so much. Imagine a private organization that takes over to provide for your care when you are diagnosed with a disabling disease! Who knew that the battle of the vaccines was so intense, and the process to verify efficacy so convoluted. Some of this applies to our situation today as people here in the US are questioning the efficacy of vaccines and the validity of the development process. Some of that is grounded in the long, checked history of polio vaccines. That first vaccine I remember was the Salk vaccine developed from inactivated viruses. Years later a live virus version of the vaccine, the Sabin vaccine, became more widely used, but today the Salk vaccine is once again used. Here in the USA, it is easy to think that polio is a disease of the past, but it lives on in other areas in the world.

So, what was next on my BioGeek reading list? Tuberculosis!!! Stay tuned…

Notes:

It was hugely ironic that my mom arrived back in the US on the very day the war with Japan ended. Years before, while her parents were attempting to enroll her in nursing school, her sister, waiting in the car, heard the first report of the bombing of Pearl Harbor on the radio; America’s entry into WWII was immediately afterwards.
The fundraising and research drives of many organizations connected to disease prevention, treatments, and cures are modeled on the success of the polio campaign. I hear the echos over the decades now with every email from the National Scleroderma Foundation.
Oh, how is my scleroderma doing these days? Tendonitis continues, but my latest visit with my cardiologist went well: my pulmonary arterial hypertension is stable, and my heart is doing okay. The EKG isn’t completely normal, but I’ll take it, right?!! He wants to add another drug or two, but we are delaying for now as I’m already taking a LOT of medications.
Last week was the anniversary of day my doctor ordered the blood tests that led to my diagnosis of Sjogren’s Disease and Limited Systemic Sclerosis.

That was 22 tests in 14 vials of blood. Today I take 22 pills a day. Kind of ironic, right? Do I consider yarn to be part of my essential treatment? Why yes, yes I do!