Month: August 2025

I am going to interrupt the post I was about to write to complain that my ginger chews, originally scheduled to arrive yesterday, have been rescheduled to arrive September 4th. In fact, according to Amazon (the only place that I have found that sells Prince of Peace ginger chews), they haven’t even been shipped yet.

I checked David’s Amazon account (for some reason, he can get Amazon deliveries to the house, whereas, I can only get them to deliver to our PO Box), and the soonest delivery available was August 30th. I ordered them too, because we can truly never have too many ginger chews in the house.

Ginger chews are part of the holy trinity that keeps me semi-functional. So far, I have yet to try a nausea med (and I have tried them all, trust me) that holds me and doesn’t give me tremors. So I rely on ginger chews and medical marijuana to hold me between doses. And the most effective ginger chews I have found (and I have tried several, although probably not everything on the market) are the Prince of Peace ones.

And for whatever reason, all I want right now are the Lychee flavored ones. I don’t find them as effective as the ginger flavored ones, so I tend to go through them faster. And I am almost out.

We do have enough original ginger chews to hold me for a while. Although I did just order more of those too.

Ok, back to my regularly scheduled blog post.

On Thursday, I tested positive for norovirus. Norovirus is supposed to last 1-3 days. I have been symptomatic going back to at least the previous week when I stopped being able to tolerate my feed at its usual rate. And here I am, almost two weeks later, and I am still only tolerating my feed at about 60% of its usual rate.

My doctor says she isn’t surprised that in someone immunocompromised, norovirus would have a longer run. Fortunately, my IV hydration has kept me out of the hospital. But because we are working without a map, I have no idea how long it will be until I can return to my full feed. And I am feeling the nutritional deprivation. Not only that, I am losing weight. Fortunately, I have fat reserves again, so it is not an emergency. Yet. I see my nutritionist this week, so we will see what she says.

The feeling of caloric deprivation was familiar and anxiety producing. I could feel my executive functioning beginning to slip. And reading has become more difficult again. Thus far, audiobooks and music are still ok. And so is spinning. Although, me being me, I decided now was the time to start spinning my alpaca fiber.

Alpaca is a camelid and the fiber is different than sheep wool. Wool has little hooks on each fiber. That is what allows it to felt. It also makes spinning easier because the fibers literally hook together. Not so in camelids. The fibers just slip across each other.

I checked all of my spinning books and no one discussed how to spin camelid fiber. Just wool. Even though all the books mention alpaca, they just didn’t explain how to spin it.

I am Gen X and I hate learning from videos, so I didn’t even check the internet. I just put my head down and kept banging my head against the problem until I figured it out on my own. I now completely have the hang of it. But if I had had my full executive functioning, I would have waited until I was fully nourished to learn how to spin a completely different kind of fiber. But I didn’t, so I just learned to do it the hard way.

In some ways, I actually picked a good week to be nutritionally deprived because it dulls all of my emotions. And, are you ready for it? My niecelettes are heading off to college on Tuesday (pause for gasps). I know!!!!!!!!!

You might think that having an extended case of norovirus would have been enough entertainment for a couple of weeks, but we don’t roll that way.

A week ago Wednesday morning, while I was setting up my hydration, the clip on one of the lumens of my PICC line broke. The clip is an integral part of the line and keeps me from getting air embolisms. I immediately texted my nurse.

After I hadn’t heard from her for a while, I remembered that Wednesday was her day off and I called the 24 hour nurse line. The home nursing company, in a cost cutting measure, has recently replaced the nurse answering the line with an LPN who has no infusion training. Despite the fact that the home nursing company has infusion patients, including myself.

I texted pictures of broken clip to the LPN. The LPN wasn’t sure how to respond and asked her clinic manager. I got a text back from her just saying that it was fine. But she hadn’t answered any of my questions. Including, ‘was it fine as in, I didn’t need to go to the ER, but I would need to get the line replaced?’ I texted my primary care doctor, but she deferred to my nurse who was much more familiar with these issues.

My nurse, being the dedicated and caring person that she is, responded to me on her day off. She was the one who finally answered all of my questions. If we were any of her other infusion patients, she would have sent us straight to the ER to get the PICC line replaced. But because she had trained David to replace my extensions, he could replace my extension on the broken lumen with one that had a clip on it, which we could use until I could get the PICC line replaced.

But just getting the PICC line replaced wasn’t as simple as it sounds. My doctor sent in the order and I waited to get a call to schedule the replacement. After a day I called the Interventional Radiology (IR) department at the local hospital and they hadn’t received the order. I called my doctor, she re-sent it and I called them back. They still didn’t have it, but it didn’t matter because they didn’t have any openings for me until the following Thursday. So I went back to waiting.

After I still hadn’t heard anything by Tuesday morning, I called the IR department again. They had the order, but were confused. The scheduler had no idea how to schedule replacing a PICC line in the same place. He had apparently been in communication with my doctor, instructing her to change the order. It turned out, neither of them were really clear on what the issue was.

I very clearly explained that the PICC line itself was broken, but that the site was fine. And that yes, I was really was hoping/expecting that the doctor could simply replace the broken PICC line in the exact same track. He put me on a long hold and went to speak with a doctor. He came back and gave me an appointment for Thursday morning.

Thursday morning arrived and an IR nurse brought us back into the depths of the hospital. She remembered me from my previous visit in December, when I got my PICC line moved from my left arm into my right. She looked at my PICC line and tried to convince us that it was fine because we could still pinch the clip closed with our hands. David patiently explained how that did not actually solve the problem while she was texting with the doctor.

The doctor came over, took one look and said that I needed a new PICC line, and that because the placement was fine and there was no infection, he would just slip a new PICC line right into the same track using a guidewire. Which, for those of you paying attention, was exactly what we were looking for before we played a couple of games of telephone and had the conversation with the IR nurse.

Throughout the procedure, I learned just how differently home nursing is from hospital nursing. The nurse who prepared me for the procedure had been an IR nurse for 11 years and had never seen a long extension. That is because long extensions only exist so that patients like myself can hook ourselves up to our infusions and flush our lumens daily. Otherwise, you end up with one T-Rex arm, too short to reach the PICC line. But in hospitals, the nurses do all of that work, so they don’t need long extensions. Also, they seem to have a smaller range of hypoallergenic dressing options. I had to bring in my own and they clearly didn’t know how to apply it. My nurse had to come in the following day to apply a new dressing properly.

The most exciting part of the last week and a half for me is the number of ER visits I avoided. At least one for the norovirus (my long hospitalization last year started because all I needed was a little hydration) and one for the PICC line replacement. Speaking of which, a couple of weeks ago, just days before the clip broke, we celebrated the one year anniversary of me getting a PICC line. Not the one that was replaced last week. I only got that PICC line in December. But I have had a PICC line for just over a year now.

In other news, I get the results of my sleep study this week, so hopefully I will be able to make more progress on getting myself a new CPAP. And hopefully my new glasses come in. My prescription change was actually small enough that I could have gotten away without getting new glasses, but it has been 3 years so I went ahead and got new purple glasses anyway. They should be coming in some time this week too.

Not going to sugarcoat it. It has been a tough couple of weeks. Between battling SIBO, titrating the notriptyline and swapping at side effects like so many swarming insects, I am feeling very beaten down.

The Xifaxan I am taking for the SIBO clogs my vent tube when my stomach forces out whatever detritus is left after the hour that I close off after taking my meds. It lets the pressure inside my guts build, leaving me nauseated and miserable. All it takes is a simple flush to fix, but it is just an extra hassle that I don’t need.

The nortiptyline titration has been difficult as I try to manage the constipation it caused. Everything coming through my digestive system is delayed, so it can take days to try to re-regulate my system. I finally got that worked out and I started feeling an uncomfortable buzzing feeling in my lower abdomen. I finally figured out that the way that I was feeling gut motility was changing. So the good news is that the nortriptyline seems to be working, but I still have some adjusting to do.

The pain has been bad enough lately that I am barely managing it, even as I throw absolutely every tool in my toolbox at it. I believe that I have come through the worst of it (see the whole adjustment and SIBO issue above), for now. And that “for now” is really beginning to get to me. Every new symptom, every bad day, I find myself wondering whether this just a temporary thing, or is this my new normal?

All this is leading to a whole bunch of anxiety around pain. Which believe me, does nothing to improve the situation. I have gone back to my pain therapist (in addition to my usual therapist) to see if we can work on this new anxiety. Breathing techniques do not work for me because breathing, particularly deep abdominal breathing, causes pain. Which, as you might imagine, is counterproductive. So far, I have been mostly managing my anxiety by spinning. And I have been doing a lot of spinning.

But, I can’t spin all of the time. There were a few days in the past couple of weeks where I was just not up to spinning. And, although I have done it, getting up in the middle of the night to spin isn’t ideal. So, clearly I need to add some more easily accessible tools to my toolbox to manage my anxiety about pain.

In the midst of all of this chaos, two friends came down from Portland and we got to hang out with them in a beautiful park, with a stream (complete with picturesque deer) and lots of shade.

The visit definitely cost me, but I have absolutely no regrets. Seeing good friends means so much to me when such joy is so hard to come by these days.

I can not underscore enough how much peace spinning brings me. I can sit at my wheel for hours (with lots of stretch and comfort breaks) and just forget about everything. I only come to when the pain or the nausea gets bad enough to break through my creative flow. Otherwise, it is just me and my fiber.

I do get frustrated that I can only ply on good days because that takes more energy than spinning. I really want to finish off my yarns, and more than that, I want to use them in projects. I have yarns designated for specific weaving and knitting projects, even as they still sit on their bobbins. I wish I was a process spinner like I am a process knitter, but I am not. I dream of ways to use my yarns as I spin them.

The good news is that bobbins are cheap and I have enough variety by color and fiber type to keep me spinning for a nice long time.