Hannah and the CoalBear: Crafting Chaos Continues….

Hi. I’m Hannah.

Do you see me waiting for the Mother of Cats to start writing?

The Mother of Cats continues to be completely out of control with all of her knitting, sewing, and other crazy crafts. She just keeps moving from thing to thing all day long, but NOTHING GETS DONE! Really, the CoalBear and I would be having concerns about the Mother of Cats, but she did manage to finish one very important thing this week. She built us a new cat tree!!!!

I hung out with the Mother of Cats the whole time she worked on the new tree, and I managed to keep an eye on the front yard bunnies too. Look at this tree!!! The CoalBear and I are spending all of our spare time hanging out on it. So fun. Now let’s talk about the crazy crafting…

She decided to get started on the octopus. Yep. She just abandoned all of shawls that she was knitting, pulled out the bin of octopus yarns, and cast on. Then she spent all of her spare time working on that for a few days.

She is knitting 5 strands of yarn together while making the octopus. That’s a lot of strings to chase, let me tell you!!!! I was just getting used to the octopus knitting when suddenly the Mother of Cats decided to work on the quilt for a couple of days.

The quilt is now three blocks big, and she says that there is a lot more of the tree to come in the next block, and… are you ready for this??? There is a cat that looks just like me on the next block!!!!! I can’t wait to see it, but did the Mother of Cats start working on block 4. Nope. Nope, nope, nope. She pulled out her new overlock maching, had a friends come over to help her, and then she started sewing a pile of fabric totes for donation. Seriously?!!! The sewing machines are noisy, and I stayed on the new cat tree the whole time she was working.

Hey, these totes are kind of fun to sleep on…

After the tote sewing episode the Mother of Cats got busy knitting… hexagons. I know. I don’t understand it either, but here we are. She is knitting little balls of left over sock yarn together to make these hexagons that she hopes to make into laps blankets to take to the infusion center. She likes the colors, and for some reason she keeps casting on JUST ONE MORE to see what the new yarn combination will look like.

I have to admit, the colors are kind of nice. Will the Mother of Cats let me sleep on the hexagons? No. She. Will. Not.

See how busy things have been. I’m lucky if she remembers to give me my tuna on time. She has been so distracted, and busy with all of the building, sewing and knitting, and I’m not even factoring in the new clue that arrives every Friday from Sharon from Security that she uses to knit her Tabby Road mystery knitting adventure. She is in clue 3 now and the shawl is starting to look kind of cool.

It has been growing, hasn’t it. The Mother of Cats can’t wait to get to the colors that more blue, but it is still pretty cool and she is learning lots of new stitches as she works.

Well, that’s most of it. The Mother of Cats has been checking out kits to knit socks on her computer, and I am seriously concerned that this is spiraling out of control. When will it end? When will something get finished? Why is she getting out more fabric to sew tote bags…

I guess that is all for now. The CoalBear (AKA Mateo) and I have to catch another episode of Bird TV while the Mother of Cats works on even another shawl…

This is Hannah, signing off.

Hannah and the CoalBear: We May Need an Intervention Soon…

Hi. I’m Hannah.

I just love hanging out in the catio every morning!!

The Mother of Cats has been staying home with us every single day lately. Why is this happening? Look at what is going on in the afternoons…

Yep. It is really hot, the air pressure is pretty darn low, and the Mother of Cats doesn’t do very well when the air gets like that. Hey, I’m a cat. I just roll with it and spend the day sleeping, but for some reason the Mother of Cats stays awake all day and does stuff.

Hannah: Do you see me?

To be fair, she does give me lots of attention and cookies, but mostly she crafts ENDLESSLY. There is so much going on, and the CoalBear and I are starting to get a little concerned.

She has been working on her quilt. I like the quilting, and I help her as much as I can. Look at the two quilt blocks that she has been working on over the last two weeks.

The next cat that is featured in the quilt will be a tuxedo like me. Not as cute as me, but still, it is nice that she will have a quilt showing how absolutely superior tuxedo cats are. I think that there is also a squirrel and a tree involved, so that is perfect, right?

Now, let’s get to the knitting. That is where things have really gotten out of control. First there are the shawls…

That’s right: four shawls!!! The first one was really fussy and hard on the Mother of Cats hands, so she ripped it out. (Good job, Mother of Cats) She said that she obviously can’t be expected to knit a shawl that was too complicated to let her listen to an audiobook or watch Netflix

Mateo: I’m terrified of Netflix!!! That huge red N is too much for me to deal with. No one should be subjected to the…TA-DUM!!!!
Hannah: but Mateo rushes into the room EVERY TIME the television gets turned on just in case it is… NETFLIX. CoalBears can be so silly.

Let’s get back to the shawls. The Mother of Cats has a lot of yarn. She isn’t making hats right now because it is hot, and there are too many hats at the infusion centers right now, so she decided to make a shawl or two. Since the first shawl was soooo complicated, she started a simple Age of Gold shawl in pink yarn. Then she started a Sharon Show shawl because she saw one hanging up in the yarn store. Then Tabby Road started, so she had to knit on that, right. This is just kind of insane because at the same time…

The Mother of Cats decided to knit some octopuses… Yep. All of that yarn has now been wound. Hold onto your tuna treats, because I’m not done yet. The Mother of Cats, still upset about not knitting hats, and hugging a huge box of left over yarn balls (why doesn’t she give them to me?), decided to start knitting a BLANKET that will be made of a bunch of different octogons that kind of go together.

She made this holding two little balls of yarn together while she knitted. Did she let me chew the yarn while she worked? No. SHE DID NOT!!!!

Do you see why I am concerned about needing an intervention? She has been crafting nonstop for days in a row. Okay, it has been really, really hot for days in a row, but still. NOTHING is getting finished and she just keeps picking up yarns and starting new projects when she isn’t fusing down little pieces of fabric for the quilts. HELP!!!

I’m pretty sure that I need an intervention here.

Also, some tuna would be nice!!

This is Hannah, signing off.

Notes from the Mother of Cats:

There is a giant octopus that I hope to knit in the blue yarns: Opus

Did you want a few glimmers? Check out this picture of the moon and a baby bunny…

I’ve also been reading a lot while sheltering indoors away from the heat, but that is another post. 🙂

All the Glimmers

It has been a week. I had some high stakes (for me) heart testing last Wednesday to see if my pulmonary arterial hypertension has advanced. Since I am already being treated fairly aggressively for PAH, an increase in pressures would be bad news. Nope. Pressures were normal. That would be a huge “YAY!!” everyone. Of course, it also means that there is something else going on that is causing my shortness of breath, but for the time being I’m happy and seeing glimmers everywhere.

This was the moon a few days ago. Glimmer.
There was this bloom on my favorite rose bush.
And my birdfeeder is seeing lots of action!

I’ve been making lots of progress on my knitting, too, since I’ve been staying inside due to the heat and the smoke of wildfires in our state.

I finished my Cloudbreak Tee, cast on a shawl for a knit-a-long that I am doing with friends, and bought some yarn so I can knit the Tabby Road mystery knit-a-long that starts at the end of the month. Did you want some links for these fabulous yarny projects?

I know that it looks like I am in a pink phase (and I kind of am…) but I want to let you know that I bought the Hey Mewed yarn kit from Miss Babs that will be greys and blues.

Did I look for a pink kit. Yes. Yes, I did. I wanted all the colors in the graphic, but finally settled for the sedate Hey Mewed. I smile every time I think of knitting a Beatles themed shawl on a mystery knit-a-long tour (magical!!) that is being run by snarky, flamethrower carrying Sharon from Security. You know, Casapinka’s cat with the questionable attitude, original spelling, and outrageous spunk. I totally need a mystery adventure with this cat!!!!

Do you see what I’m dealing with here at home? Mateo hasn’t figured out snark yet.

I should be kinder to Mateo. His every move on the catio is judged by this squirrel…

So, that was my week. Medical testing, knitting, wildlife (and moon) watching, and some reading on the side. Our heat wave will continue all week, so I should get a lot done while I wait for my doctors to decide what’s next. I’ve been assured that they are actively considering options, and I can hardly wait to hear what is next.

Okay, I am kind of in scleroderma purgatory, but hey… I have the glimmers!!

Yes, this is a bunny that has decided to hang out in an empty pot on my deck right outside the catio. Mateo is beside himself.

Choose to be happy!

I almost forgot this huge glimmer. The bald eagle eaglets, Sandy and Luna, have returned to the nest for yummy fish meals and to spend time together. It makes my heart swell to see them sleeping side by side in the nest after a day flying around. In the days to come they will learn how to catch their own fish.

You can watch them yourself at the Big Bear Valley site online.

Crafting in the time of the Blood Moon

I live in the state of Colorado, which is in the western part of the United States. We are in deep drought here, and it has been hot. There are several, very serious wildfires burning to the south and west of where I live, and I am in the smoke plume. The light outside is… strange. The Rocky Mountains, just west of where I live, can no longer be seen. The strangest effect is the moon.

That crazy red cast of the moon is caused by smoke. Last week was the Strawberry Moon, but here in the area where I live, it was the Blood Red Moon.

Every day another air quality alert is issued: Unhealthy for Sensitives Groups. I’ve been staying indoors with the cats and my air purifier, happily crafting for days. This is what I’ve gotten done over the last week.

I’ve been assembling an art quilt this week that required fusing precut pieces of fabric together to make motifs that are later assembled onto a background to make the larger quilt block.

This the first block of the quilt. Only 5 more to go…

Can you see the individual elements on the finished block? The stuff in the middle is laundry that will be hung on wash line hung between trees that will appear in the future as more of the blocks get done. Do you see the tuxedo cat with the laundry? Obviously, this cat is the one hanging the laundry out, and there will be clothes pins involved eventually. Tuxedo cats are such great help, right? Of course, Hannah was right there the whole time I was working on the quilt block, helping tremendously.

Hannah: The Mother of Cats is so lucky to have me helping her!! More tuna, please…

In addition to the quilting, I also made a lot of progress on my Cloudbreak sweater. I have finished the first sleeve and I plan to cast on the second one as soon as this post goes up. No sleeve island here!!

I spent some time with my rigid heddle loom on a new scarf that I am really liking. The yarn is mostly grey with a little strip of color in it. Look at how fun it is as a woven cloth!!

It has been a pretty productive week! I’m concentrating on the knitting this week so I can get that sweater done as I’ve signed up for a knit-along at a local yarn shop in town and I feel I should reduce the number of works in progress before I cast on that big shawl. Maybe there will be some sewing…

I have been going out onto the catio with the cats in the evenings because you can only expect cats to stay indoors for just so long when there are BIRDS and SQUIRRELS and BUNNIES out there. This week, just for fun, I added a string of fairy lights to the cat netting that makes the walls of the catio. Look at how fun these are!!! We usually sit out there every evening until the kitty lights come on; that’s how we saw the blood moon.

What else happened this week? The baby eagles that I watch left the nest last week (one FELL OUT and accidentally fledged, and the other flew off the next day), spent a couple of days learning how to fly well as their parents fed them, and returned to the nest to hang out together late last week. Yay Sandy and Luna! They are hanging out together now, flying around in the vicinity of the nest while the parents continue to deliver food, mostly FISH!! These eaglets love their fish! Eventually they will learn to catch their own and become independent, but for now I’m still following them in their adventures.

Speaking of adventures, Mateo got his tummy shaved this week, his sides trimmed down, and has been combed every single day no matter what he says. Now every trace of the winter coat is gone, and he is sporting a sleek summer coat. Gosh, look at that white patch on his chest. As it turns out the CoalBear is actually a little MoonBear.

Why does Mateo look a little sad? I had just finished shaving his tummy when I took the picture. Poor guy. Here’s a picture of him in his winter coat so you can see how much fur has come off

He’s a whole new cat, right?!! In the winter I tend to forget that he is actually black under all of that floof!

It is a sad time here, don’t get me wrong. The lawns are all dead (drought) and the county just sent me information on how to prepare for an emergency evacuation in case of wildfire. Fireworks were banned this year. I am keeping the car full of gas. Resources from cities are being send to battle wildfires. I sew for some of the emergency response agencies in my region, and this week I plan to sew a pile of fabric tote bags to go to an agency that will stuff them full of essentials to deliver to people displaced by the fires. Keep us in your thoughts.

It is the time of the Blood Moon.

Hannah and the CoalBear: CoalBear Adventures

Hi. I’m Mateo the CoalBear.

Do you see what is happening here?

I woke up Thursday morning feeling… not well. I was walking funny, throwing up (I HATE when that happens) and forget eating. I think that Hannah ate my breakfast for me, and I know she ate my cookies!! I felt too bad to even go out on the catio for more than a few minutes. The Mother of Cats called the vet to see if they could take me.

Nope. They were drowning in emergencies. They gave the Mother of Cats some numbers to call of emergency vets (I hate the vet!!) and she started calling. Nope, nope, nope. I went to hide in the downstairs shower while she figured things out, and then in the afternoon she found a place to take me. She loaded me in the carrier and went to get her purse.

Ha. I climbed out! The side zipper was open. She tracked me down and reloaded me. Ha. I may be sick, but I can move fast if the zipper jams…

Finally, she got me into the car, and we headed off to the horrible Vet ER. THERE WERE DOGS THERE!!!! We waited, and finally I got some xrays. The Mother of Cats was told that I needed emergency surgery (AGAIN!!!), and that we needed to go to ANOTHER ER to have that done. They took more xrays there, and then told the Mother of Cats that I was too unstable for surgery. I got this horrible IV needle in my arm and they gave me lots of fluids.

Hannah: Like, this is a surprise? I already knew he was unstable…

The Mother of Cats went home for the night and LEFT ME ALONE!!! The next morning, she came back and sat with me in the treatment room with all of the people and dogs and machines and everything. It was so scary.

Look at this horrible cage. I was hiding in a corner until the Mother of Cats came to sit with me.

I got an ultrasound at noon and look at what they did to me! All of my beautiful fur got ruined and I have goop stuck in my fur. I smell really funny, and what is up with this horrible tube going into my arm!!!!!!

My fur is gone!

Guess what, the intestinal blockage was also gone! My intestines are pretty sore and I may have to have a special diet for a while, but they kept me for a few more hours to push fluids and then I got to go home again.

I smelled so bad Hannah hissed at me all night!

The Mother of Cats says I’m getting a haircut next year so this doesn’t happen again, and she is throwing away some of my toys that have strings on them. Life is soooo unfair. Why is everyone being so mean. At least Hannah has stopped growling at me…

Notes from the Mother of Cats:

I told Mateo that he is getting shaved next summer and will wear funky little outfits from now on! The clinic where he finally ended up told me that he was saved by the fluid bolus that they pushed at the first emergency vet facility. Once they got him, they could see that things were improving a little on the x-rays, and since he was still very dehydrated and had developed a heart murmur they held him overnight for the ultrasound. That turned out to be the right call.

Do I have more grey hair. Yes, yes I do.

While all of this was going on I also got some knitting done. Look at my Cloudbreak Tee.

I added a couple of inches to the body before I started the lace section, and I think that was a good decision. The cast off for the body was a sewn one that took 2.5 hours to do, but the result is very nice. See that little bit of yarn that I am holding? That is how much yarn was left when I finished sewing. I WON AT YARN CHICKEN, PEOPLE!!!!

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…

Look at that baby bunny!!!

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.

Hannah: Noooo…

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?

YES!!!

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…

Hannah: She is still alive!!!

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?