I realized yesterday that it has been more than a month since my last update. For a change it is because I have been doing relatively well. Usually, my long silences are because something has gone awry. And life hasn’t been exactly perfect, but it has been fuller.
After finishing a 6 week course of Transcranial Magnetic Stimulation (TMS), my mood has continues to improve for another few weeks. Right now I feel like I am at Peak Eva. I have had full nutrition for over a year, which has made an absolute world of difference. My mood is likely as good as it gets and I have gotten down to 6/10 in pain on a regular basis. I still hit 8/10 every evening, but I now can almost count on having several good hours a day.
Me being me, I am falling all over myself trying to squeeze everything in while the going is good. I am concurrently reading 4 books, although two of them have been assigned by therapists, so I am deliberately going through them slowly. But the other two are just for fun.
I am also able to enjoy music again, which makes me want to do the things I like to do while listening to music.
Fall is fiber season. Both the summer and fall shearing are over and there are fleeces and fiber to be sold. That is when there are fiber gatherings all over the country, where fiber crafters get to spend time with the people raising, preparing and dyeing the fiber we so love. Ever since 2020, there have even been fiber gatherings that continue online . They are particularly useful for folks like myself who are primarily interested in heritage fibers. Both the buyers and sellers are both small, geographically dispersed folk trying to connect.
This year, during one such fiber gathering (Wool and Fiber Arts Gathering WAFA) I discovered a farm in Oregon raising a particularly ancient breed of Shetland sheep from a time before shearing. Each sheep’s fiber loosens from the skin (if I recall correctly, the lanolin is involved in this separation) and the farmer can just gently pull out the fiber. The process is called “rooing” and each animal readies to roo in its own time.
And, while exploring their fiber, I discovered that they have a line of sheep named for characters from Firefly. Looking at the colors in that line, I hatched a long-range plan. I want to spin, ply and knit myself a greyscale ombre sweater.
To start, I will need to start spinning thicker singles. Because everything I spin ends up really fine. My 3ply yarns are fingering weight. I have been wanting to practice spinning bigger singles for a while. Counter-intuitively, it can actually be more difficult to spin consistently thicker singles, especially with an electronic wheel.
Shetland wool has more of a bite than Merino, and the roo’d fiber is no different. This makes it an easier fiber to spin a little more thickly. It doesn’t just naturally wander off into gossamer territory if my attention wanders for a moment. I have 1/3 of an ounce of my new Shetland (from River) on a bobbin right now, that when triple plied should make a nice solid DK weight yarn. That is assuming that I can maintain a consistent thickness for the other 2/3 of that ounce. If not, I have plenty more Shetland fiber to play with until I get it down.
I haven’t picked out the sweater pattern that I intend to use yet. I am waiting to see what thickness yarn I can consistently spin up. And now that I have my tunneled chest catheter, I already have some requirements for the sweater’s collar, but I want to live with the line a little longer before committing to a design.
I have been relegating my knitting to the evenings when I am tired so pattern simplicity is a must. I have mostly been knitting up prosthetic breasts in a really soft cotton for Knitted Knockers. They distribute them at no charge to people with mastectomies. The soft prosthetics, which they will stuff, are ideal for shortly after surgery or during painful radiation treatments and are designed to help people feel “normal” and less like a patient during an intensely medical point in their lives. My hypnotherapist used to work at the Cleveland Clinic where she saw firsthand just how meaningful and important they were to recipients.
Unfortunately, I have run out of the approved yarn mid-knocker (Knitted Knockers is very particular about the yarns used to knit their knockers), so I am finishing a second sock to donate to Knit the Rainbow while I await my next yarn shipment. That is slightly less brainless at the moment because I am turning the heel and didn’t like how last night’s efforts turned out. I mean, it was fine, but not as well matched to the first sock as I would have liked. So I frogged almost the whole heel back and am trying it again. It is a good reminder of why I so much prefer knitting both socks at once using the magic loop. Lesson learned.
I am also working on the very slow process of resuming enteral feeds into my J tube. I am eons away from transitioning away from TPN (IV nutrition), but even if I never fully get off TPN, there are very good reasons to run trickle feeds into my J tube daily. The first is prevent atrophy of my small intestine. That way lies increased pain, increased risk of sepsis and other unpleasant things that I am sure I would like to avoid if possible.
The second is that I am at risk of having an essential fatty acid deficiency because I only run lipids twice a week due to my soy allergy (there are no non soy-based lipid formulations for adults). I am not fond of lipid days because they make me feel generally crappy for the full day that I run lipids and into the following day. I can also taste my TPN (apparently not everyone can) and lipids days taste particularly bitter and unpleasant. My dietician is hoping that trickle feeds will give me enough essential fatty acids to stave off a deficiency.
The issue is that my small intestines continue to be overly sensitive to my enteral pump, even at ridiculously low rates. The goal is to run trickle feeds for 4-6 hours. But after two days of running just water into my J tube at 2ml/hour, my pain and nausea were both up for several days.
At the advice of both my pain therapist and Samantha, the therapist who runs my Thriving with Gastroparesis group (who has gastroparesis herself) I am slowing the process way, way down. Starting at just half an hour and then giving myself two full recovery days. The goal is to achieve some success and then building up from there. If, after a week my pain and nausea stay at roughly my baseline, then I can increase the running time a bit. And eventually, increase the speed and finally start adding in formula.
There are more things on my list of things I would like to do while I can, but I am working on not biting off more than I can chew right. I am pausing here and seeing how things go for a while. Besides, my days are already pretty full once you add in the med flushes and the IV meds and everything else that goes into keeping me a generally upright, semi-functional human being.