Crip Time is Usually Not Writing Time

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A post on why I’ve been neglecting my blog.

My Primary Sclerosing Cholangitis (PSC) has progressed to the point where some of my flares require long hospitalizations, more IV antibiotics, and ERCPs. I’ve been much sicker for much longer, and sometimes I don’t even have the focus to do much embroidery.

A red & purple organza liver basted onto grey linen. The biliary system with all its branches between the two layers of organza is filled with bilious green. There are small yellow beads on the biliary system inside the smaller lobe. There are white beads sewn on the narrow end of the top organza liver. An arched T shape filled with tight crisscrossing stitches in thick off-white thread separates the large & small lobes of the liver and curves over the top. There are various blocks of text stitched in light grey single strand thread around the image. Some of them are cut off in this photo. They read: roots grow in us. through our landscapes. plexuses. fleshy beasts tethered. By fluid and ligaments. Such a gentle embrace. Beneath our skin. Here is the thing. Laid open. The spells it. A language. Between. this golden ingot. This tailed beast. And its viscous song. What a miracle these spaces. Are what make us whole.
A detail of my liver embroidery tethered by fluid & ligaments (2023) with some of the strictures typical of PSC done as agate beads, with some liver abscesses on the top layer of organza. I have many more strictures now, and as of November 2025 I no longer have a gallbladder. More about this piece here.

The Numbers

I did a “Chronic Illness Unwrapped” for 2025 out of curiosity and it was a very helpful exercise, showing just how much time being so ill with both PSC and ME/CFS has taken:

Days in hospital: 21
ER visits: 2
Doctor appointments: 20
Tests & procedures: 16
Slow bear days: 41
Cat mode days: 95
Moderate days: 53
TOTAL ILL DAYS: 248

And here’s my stats for 2026 so far:

Days in hospital: 15
ER visits: 2
Doctor appointments: 4
Tests & procedures: 9
Slow bear days (radical rest): 22
Cat mode days (mostly rest): 22
Moderate days (slow work): 8

Out of the 150 days so far this year I’ve been mostly & sometimes completely incapacitated for 60 of them. So of course not much writing is getting done at all.

Because of the progression of PSC I’m currently in the process of being assessed for a possible liver transplant. The assessment process itself takes months, and if/when I am approved I will have to wait for a good match. My liver specialist is hopeful that all of this will go smoothly and that finding a match will be fairly easy since I’m tall for a woman and my blood type is that of universal recipient.

Current Work

My current plan is to try to write shorter posts as things come up rather than longer updates. And maybe catch up on a few other things if time and energy allow.

My current embroidery is titled we are made of starstuff: belly and uses astronomy imagery to map out the scars and moles on my belly. I’ve just finished the Milky Way as my hysterectomy scar. I post weekly updates on Wednesdays on BlueSky, Mastodon, and Instagram if you’d like to keep up with the progress of this piece.

Milky Way detail: Lia’s hand showing the Milky Way is being stitched in tiny single strand seed stitch and French knots in white, peach, oranges, yellow, aubergine, rose, purples, dark browns, light green, & grays. The tiny needle holds bright yellow thread. Below the Milky Way is black on black whipped backstitch that looks a bit like flames, it’s pubic hair. and right An hourglass-shaped needle minder reading“this is taking forever” is attached to the cloth. 
From the last WIP Wednesday, 27 May 2026

The main project I’m working on when I’m able to is a pattern of my Four Seasons of Mitosis. I’ve written a beginner-friendly booklet and am now in the editing process. I’ll also be offering just the pattern without written instructions for more experienced embroiderers. Both options will eventually be for sale on my ko-fi as digital downloads.

The cover of Lia’s Four Seasons Mitosis Sampler. Full beginner Instructions. There are four embroideries of mitosis in a grid. One in autumnal oranges and browns, one in winter blues and greys, one in summer greens, and one in spring greens and pinks.

Coping

My Stoic Philosophy and meditation practices are what is getting me through the past couple years along with the very excellent care my husband gives me. I am taking one day at a time, being grateful for what I can manage, and flourishing as much as my body allows me to.