It has been a bummer of a week here at Chez Evid. In addition to all of the Passover anxiety, and the general physical exhaustion from having a busy week just prior, Nommie gave us a real scare. The combination was simply too much for my beleaguered self and my health took a downturn.
Shortly before Passover, Nommie started having bloody diarrhea and very quickly went from too thin to bony and frail. David took him to the vet and he had, in fact, drooped down to <8lbs. He would be a healthy weight at 12lbs. Not knowing the cause of the distress, the vet gave him antibiotics in case it was bacterial. But capturing Nommie to give him meds would terrify him and he would eventually hide and not come out until he felt safe again.
We tried mixing the meds into wet food, but he wouldn’t go near it. Cats really cannot go for very long without eating before it becomes a problem in and of itself. Nommie was already too thin, so we went back to just giving him straight wet food. Fortunately, he shortly went back to eating. He still didn’t look great for a few seriously worrying days. Gratefully, he seems to be mostly back to himself again. He is still too thin and frail, but he can jump up to his favorite spots on the couches again.
Right before Passover I also managed to get an appointment with a possible PCP so finally someone could take a look at my miserably, achy shoulder. Spoiler alert: this doctor is not my new PCP.
Even though I came in for an acute issue, she went through the whole new patient protocol, never once lifting her eyes from the screen. I told her I was there for a very painful left shoulder. I explained that I can only sleep on that side because the nausea gets too bad if I sleep on my right side or my back. I didn’t even mention my stomach because the nurse who took my vitals confirmed that I had a G/J tube so I knew it was in my record. Not to mention that I was hooked up to a feed at the time so I had a visible tube snaking out from under my shirt, should she decide to look at me at all.
She asked how long the issue had been going on. I said several months. And she kept confirming that I hadn’t been to see anyone about it during that time. Not even an orthopedist? I explained several times that I was dealing with a literal life and death situation, first functioning at a serious and extended caloric deficit and then working out issues with my feeding tube and that it was only now that I had the capacity to deal with anything besides the absolute basics.
She “uh hum”-ed and told me that she put in an Rx for lidocaine and recommended physical therapy. She also suggested that I take an over the counter anti-inflammatory nflammatory and “uh-hum”-ed when I explained that I cannot take anti-inflammatories because they irritate my stomach. You remember that stomach that is already seriously uncomfortable and has a tube coming out of it to keep me alive?
I jumped on the Rx for PT and she told me “to really give it a try.” That was my intent as that was what I was originally hoping to get out of the appointment. Honestly, the lidocaine was an unexpected bonus. I figured I would have to wait until physical therapy started doing the trick for pain relief.
Never during the entire appointment, despite it being the primary topic of conversation, did she even look at my shoulder. No assessment of pain (she never asked but I made it clear that it was enough to keep me from sleeping), no checking range of motion. Absolutely nothing. But she did put in an order to get my annual mammogram (I am at exactly a year from my last one, so I am not even behind schedule) and stated that she was very strict on that point.
The next day David went to pick up the lidocaine patches and learned that the Rx was for only 10 patches. The pharmacist was confused because the standard Rx is 30 patches. Suffice it to say, she wasn’t listening to me at all.
Fortunately for me, the lidocaine patches do help and make falling and staying asleep that much easier. I have submitted a refill request and we will just have to see what she does.
I also asked my new Complex Care Coordinators to get me set up with PT, although I could not find the order on the patient portal. There was indeed an order for a mammogram, but no order for PT. She apparently hadn’t even bothered with that little detail. Fortunately, I had the Complex Care Coordinators to do the heavy lifting to get an actual PT order from her and find me a physical therapist.
Hopefully, you can see why my health took a hit. It wasn’t exactly the quiet and restful week that I needed.
In this week’s spin of the Wheel of Misery we landed on hydration management. Drinking has always been more uncomfortable to me than eating. I can eat pretty much anything I want, as long as it is no more than a few bites. But drinking feels like a lead weight triggering a nausea bomb. Like everything about gastroparesis, I have good drinking days and bad drinking days. But this week I seem to have gotten stuck in a bad drinking rut. Which meant we were on dehydration watch.
I added in some additional flushes to increase my hydration, but that wasn’t enough. I was thirsty, but drinking made me feel awful. I tried sucking on ice cubes, but that was almost as bad. Then I remembered that my stomach no longer accepts unadulterated water. It has to have something in it. It can be sugar, it can be bullion, it can be tea leaves or herbs, but it damn well better not be just straight up water.
Apparently, this is an actual gastroparesis thing and I am not alone. But I do live in NYC which has award winning water, and I am just irritated that I no longer get to appreciate it.
David, remembering that jello and popsicles count for hydration purposes, ran out to pick up some fruit juice and jello powder. Regular popsicles are way more than I can manage at a single time, so he decided to make ice tray popsicles.
Remember that weird PSA from the ’70’s about making ice tray popsicles with fruit juice? Well that is exactly what David did. Although it is a lot messier and harder to get the toothpicks in than advertised.
We remain on hydration watch, but the jello and popsicles are working as they should. Based on both urine concentration and skin pinch tests, I am back to managing my hydration well.
But fret not, the week was not a total disaster. Our very dear and beloved friend Tricia came to NYC on a Theater Weekend Extravaganza™️ with her son and his girlfriend. She trekked from Brooklyn to Astoria to see us while her son was pulling the kind of shenanigans to see a band that made my own teenage self super proud of him for.
I am incredibly grateful for the technology that has allowed me to stay in touch with the people I love through our cross country moves, a pandemic and now a chronic illness. Tricia has been dealing with her own metric ton of crap these past few years, and there is something to be said for being in the same space to diss on Radical Acceptance (it so suuuuucks, but damn it, it works <insert stomping foot emoji>) with someone. It is way more satisfying than doing it over text.
Seriously though, It has just been so long since we were with her. She very wisely planned a firm end time to our visit with another commitment because she knew that we would all take as much time together as possible. And I started our visit wiped out and was simultaneously relieved and crushed that we only had an hour and a half. She was absolutely the brightest spot in an otherwise seriously crappy week.