Month: June 2024

The UTI has been resolved and I feel somewhat better, but not as better as I would like. Normally, after one heals from an infection, there is a wonderful feeling of general healthfulness. A feeling of truly being better. It often comes with a rush of mojo so you feel like you can take on the world. With chronic illness, not so much.

I felt when the antibiotics kicked in. And I have felt the infection slowly resolve. But any boost of energy was lost in me just trying to catch up the most basics. It is frustrating beyond belief. It is also an opportunity for me to practice my radical acceptance.

It has not all been bad. A bit confusing perhaps, but not bad. Inexplicably, I have been finishing my feed without increasing the speed on my pump. Some days I finish early. Today I finished right on time. I have no idea what is going on. But I am getting full nutrition, so I am not complaining.

I am complaining (a bit) about some ongoing discomfort with my tube. But it is not so bad that I don’t think I can hold on until my appointment with the motility doctor on July 10th. The motility doctor will most likely NOT be the doctor who can help me with my tube, but I am hoping that the benefit of a motility center is that there is at least one doctor there who can manage my tube. And hopefully they can do something about it quickish, because I am now in the window when my tube should be replaced (four to six months, with six months being in very early August).

I am not spinning, but I am beginning to read easy novels again. Actually, I am juggling a YA science fiction book (which is not my usual genre, but it is the first novel of someone I have subscribed to on substack for a couple of years and I am curious about his fiction) and an autobiography of a cartoonist returning from WWII. David encountered it while unpacking and passed it on to me. Both are slow going, but going, which is about all that matters to me right now.

I am increasingly frustrated with Facebook’s algorithm and how so many more people saw the post that I had moved to Woodacre and no one saw the link to my blog. Basically, I am just about completely fed up with Facebook, but I cannot leave because that is where the critical mass of my people are. Anyway, if you want to keep up on my adventures, you can always subscribe on this page and you will get the posts in your email.

One last thing, because I want to end this post on an up-note. Our move to California has been so good for me. It has been great to be able to get together with friends and family from near–and in some cases from far-ish (east coast)–in our backyard. Completely maskless and in our own little bit of forest. definitely an upgrade.

It has been way too long since I last wrote a post. Much longer than I had intended. But I am still learning to navigate the world of chronic illness, so some things that may seem obvious to others somehow turned out to be news to me. For example, when you have a chronic illness, UTIs are a really big deal.

When I overexert myself, whether that be physical or mental, my gastroparesis symptoms flare up. Other times, when everything is calm and quiet and I am just hanging around, minding my own business, my gastroparesis symptoms flare up. My point is that my disease is cyclical and this is going to be an ongoing issue for me.

My feed is so close to 100% of my goal (I am at 50mph right now) that it no longer matters if I have a bad day, or even a stretch of bad days, and can’t eat. But not drinking is another matter.

I struggle with my hydration on the best of days. I can’t get enough water through my feed or my flushes, so I need to get another 20oz (ideally) orally. The problem is that I often find drinking to be incredibly uncomfortable. It either nauseates me, hurts me, or most often, both.

I was recently in the middle of a gastroparesis flare when the weather turned hot. Thanks to my dysautonomia, I struggle to regulate my body temperature. Fortunately, I had already been alerted to the fact that this makes me incredibly vulnerable to overheating and/or dehydrating in the heat. Yes, I am copping to having known to be on the alert for dehydration when the weather turned hot. But I was also feeling like crap and drinking was truly and utterly unappealing.

I already fed you the punchline of this story, I ended up with a UTI. One that hit me like a ton of bricks. So much so that I allowed myself to ignore it when I first felt the first inkling of an issue. I kept hoping that I was just imagining symptoms and that it would go away on its own. Spoiler alert. It did not go away on its own.

Fortunately, we have a good primary care doctor who gave me magic antibiotics. She warned us that they would worked slowly but that they also only target the bladder. I was more than happy to wait a bit for relief if it meant not having to try to rebuild a gut biome without eating.

As promised, the antibiotics took their own, sweet time before I started feeling better. I started the antibiotics on Wednesday night. I am writing this on Sunday and the today is the first day that I feel like my usual crappy-feeling self again.

David made me a lightly sweetened ginger decoction that I have been adding to unsweetened cranberry juice to help offset the nausea that comes with drinking. And thus, I have been able to both address any lingering issues of dehydration and recover from my UTI. But there is a very important take home lesson from this experience.

For me, hydration is as important to my health as taking my medication. The alternative for me is a trip to the ER for IV hydration. While I am incredibly grateful that this is available as a fallback, it is something that I would like to avoid if it is at all under my control.