We are now coming up on a year since Tube Flippalooza, in which I ended up on TPN (IV nutrition) for 9 months, suffering an undiagnosed case of C-Diff for months and then a SIBO infection that lasted months after that. I am not quite back to where I was this time last year, I am still venting continuously and am reliant on IV hydration. That being said, I am also doing better than I was in some very important ways.
Last year at this time, I was still fighting to get myself to full nutrition. I wasn’t yet able to read more than social media and short form articles. I certainly wasn’t spinning.
Going on TPN brought me up to full nutrition very quickly and gave me reading back almost immediately. That was a huge gift. And the extra nutritional support allowed to me to transition to essentially full enteral nutrition through Etisarap (my feeding tube). Something I have now been able to maintain for several months and I am still going strong.
Keeping myself adequately hydrated has been a problem since I developed gastroparesis, because I find drinking to be more painful than eating. Even small amounts of fluid in my stomach are painful. And they just sit there, going nowhere for hours. Since I already had the PICC line, adding in home hydration was easy, and has gone a long way to keeping me comfortable.
By far, the most exciting development is that I now have enough spoons to spin. And not just some days. I have been able to spin every day and it is doing wonders for my mental health. It unlocked all of my blocked creativity. I am now dreaming well beyond my capacity, but that is ok. Because I also have the brain space to come up with creative work-arounds.
After I warmed up by spinning some super easy fiber, I started spinning the other half of some fiber from a grab bag I bought at Oregon Flock and Fiber oh-so-many years ago. I had spun the first half of the bundle when I was first learning to spin on my e-spinner*. I still had the single from the first half on a bobbin. Yesterday I started plying the two halves.
It was such a great reminder of how far I have come, regardless of the 3 years when I couldn’t spin. The single on the first bobbin is filled with rookie mistakes. The single I just spun is also filled with mistakes, but mostly the kind of mistakes that require time and practice to resolve. They are mistakes that tell me that my hand positioning needs some adjustments. Or that my fiber prep was inadequate. All mistakes that mean that I will just have to keep spinning to work them out. And I am just fine with that. I am calling the resulting yarn “First Spins.” It may not be useable for anything more than knitting up a swatch, but I am damn proud of it.
In other news, it took almost exactly a month, but my Clog Zapper finally arrived. I am now kind of regretting that I only purchased two doses, given how long it took to arrive, but oh well.
My J tube has continued to get uglier and uglier, with little globs of old formula stuck to it everywhere. But today that ends. After I disconnect from my feed this afternoon, my J tube is getting a thorough cleaning. I am very much looking forward to it.
This week I also learned that we had lost our complaint with the California Insurance Board. They too, completely missed the point and insisted that I should be able to see an in-network psychiatrist for a non-psychiatric use of a tricyclic antidepressant.
Ironically, we also got a letter this week that our insurance company is at an impasse at negotiating terms with UCSF and MarinHealth. The implication being that if the two parties can not come to agreement by July 1st would put the psychiatrist they are insisting I can see out of network. So the saga continues.
This is particularly frustrating now because the greatest source of pain for me continues to be my brain misinterpreting gut motility as pain. And the switch to nortriptyline, which I have been waiting to initiate for over a year now, is the next step in working on resolving that. I see my pain doctor on July 7th and I am hoping we can work out a Plan B to get me on nortriptyline as soon as possible.
David foot and ankle continue to heal, albeit a little more slowly than he necessarily always has patience for. He is out of the boot and in a regular shoe. We both prefer to walk around barefoot/in socks, but right now he has to wear shoes in the house to give his foot a little extra support and stay comfortable. I remember this stage from when I broke 3 metatarsals several years ago and it was more frustrating than the boot for me. Being that close to back to normal, but having to still be patient can really suck. Unsurprisingly, he is prone to overdoing it. But he will get there.
*Best adaptive tool ever. I don’t have to expend any energy on the foot pedals or trying to coordinate my hands and feet.