Cloudbreak Tee – 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: 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…