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!

Unknown's avatar

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

Leave a comment