Crip Time is Usually Not Writing Time
A post on why I've been neglecting my newsletter
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.
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 the Notes section of Substack if you’d like to keep up with the progress of this piece.
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.
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.
Thank you as always for sharing the authentic truth about what is happening with you ... these truths are so important for all of us to break narratives about what productivity and creativity actually look like in real human bodies and minds.
And the work you're continuing to make is beautiful.
everything you do is so cool and gorgeous and lovely! wishing you good rest and good days for the season ahead!