Once again, apologies for the long silence. The daily trips in to San Rafael for TMS treatments, plus the high holidays, plus a two day virtual gastroparesis retreat, plus a trip to Stanford, all on top of my usual appointments and time consuming medical routines left me too exhausted to do some of my less critical self care (which, of course backfired on me), let alone write a blog post.
But today I was able to take a beat, do most of what needed doing so I decided to update folks. So here goes:
Things are (p’tai, p’tui) stable, the TMS is most definitely working (although, I did just sign up for two more weeks because I still don’t have enough resilience) and I have begun to figure out how to do the mental gymnastics necessary to live alongside chronic pain. Unfortunately, these mental gymnastics are exhausting, so I still have some pretty firm limitations. Overall, it means that I have a little more space to resume living my life. A life that I am slowly, bit by bit, learning how to reclaim.
I love weaving. I love the motions, I love watching a piece of fabric form before my eyes. That is why I bought a used loom at Oregon Flock and Fiber eons ago. I have hauled it around the country with the original warp that it came with. Something about warping a table loom with 4 heddles just immobilized me.
I had originally planned on creating my own warping board, but I decided that that was too much of a barrier, so I asked for one as a gift. And still, nothing.
But then I spun my first bit of Navajo-Churro wool and it so wanted to be woven. I could just feel it in the fiber. And it is such fun fiber to spin. I have a lot of merino waiting to be spun up. It is so sweet and easy to spin. But I keep coming back to that Navajo-Churro. in fact, I just purchased some Navajo-Churro in a beautiful creamy white and some in a beautiful silver with an eye to getting it on my table loom.
I recentlalso bought some warping yarn and replaced the heddle hook (for pulling yarn through the heddles and beater on the loom)that was lost some number of moves ago. And I started working on warping my miniature loom. Turns out it wasn’t that scary. The big loom still intimidates me a bit, but that is all. I am absolutely ready to really start learning how to use my warping board and get my loom warped. It may take a while. I have a huge amount on my plate at the moment. But fear isn’t going to hold me back any longer.
Another things that I have been struggling with for a long time is celebrating holidays when one doesn’t eat. I struggle with all holidays. Thanksgiving is just as bad as Rosh Hashanah, or Tu B’shvat, which is also my birthday. I still don’t have any satisfactory answers. But in November, assuming my health remains stable, I will be co-facilitating a peer support group, alongside Sarah Osbourne, the founder of the organization “A Mitzvah to Eat,” for fellow Jews with tubes all about celebrating Jewish holidays when one cannot eat (I did put together a contingency plan in case I am too sick to fulfill my obligation). I don’t expect any brilliant, life changing answers, but it will be nice to meet my community.
Otherwise, I am just pretty busy doing all of the things required to keep me functional: 3x day oral meds, 4x day IV meds, 2x day meds in my J tube. Plus my various therapies and acupuncture, plus my daily meditation and hypnotherapy. It was the meditation and hypnotherapy that I let slide when I started TMS. Having restarted them both, I can now see how critical they are to my pain management.
I still haven’t been able to start the anti fungal into my J tube because there are literally not enough hours in my day to add in additional flushes necessary at this point. But I will as soon as I finish TMS. And then, some time after that, assuming that I can get my daily pain back down to 6/10, I can restart trickle feeds into my J tube and maybe, possibly get off TPN. But that is a problem for Future Eva. Present Eva is practicing feeling proud of all that I have accomplished in these past few months.
Facing my fear
