No one gets between me and my ginger

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.