the_rck

Long time no post. I keep starting posts and then getting distracted and not finishing. At this point, I don't remember what I've said and what I haven't.

Cordelia is in her second year at university. She's still aiming for a psychology major. This year, she's aiming to stay on campus more weekends than she did last year (last year, she came home almost every weekend). We're only a month in, so it's too early to say how it will go.

My body has continued to disintegrate. I did months of hand OT and ended up with a couple of splints and some exercises. The splints keep my joints from hyper-extending, and the exercises help with the resulting muscle cramps.

I'm using a walker now, at least when I go out. It's a heavy thing that doubles as a portable seat so that I don't have to stand while waiting at bus stops. We got it so that, if I took a walk, I could stop and rest as I needed to. I can't use it for supporting my weight because I can't put that stress on my hands and wrists, but I do use it for balance. It works pretty well for that.

Back in May, I dropped my laptop while I was getting up. I caught it before it hit the floor, but I caught it edge-on on my left ankle. It's still swelling up and screaming at me when I do much of anything. I did a couple of months of PT, but we couldn't find anything that helped beyond ice and compression. I have to ration my time on my feet, so I can shower or do the dishes or go to an appointment. Heat (including warm showers) has tended to make the ankle worse, so the shower chair we got for me has been minimally useful as far as helping my ankle.

I took a lot of cold showers over the summer. I found them helpful for all of my joints. Now that it's getting chilly, cold showers are much less appealing.

I've had a couple of rheumatology appointments in the last year. The official diagnosis is 'benign joint hypermobility syndrome' which is one of those things that, if you google it, will come up with 95% of results saying, "Don't worry. Your child will grow out of it." The joint hypermobility diagnosis meant the rheumatologist I saw shoved me out the door because it's not inflammatory. He said EDS-h but declined to put that diagnosis on my record, just offered to send me some informational urls about it. I think he was mostly peeved that I can't take any of the medications he'd normally prescribe for pain.

I think that I'm hitting a barrier in having my pain taken seriously given that all I take is lots of acetaminophen and occasional naproxen. I'd take naproxen more if it didn't make me sick after about three days. It's just that naproxen is less nasty for me than all the other NSAIDs. Opiates are off the table due to my genotype-- I need higher than usual doses to get pain relief, and I metabolize what I take much more slowly than normal.

If it weren't for the pandemic and my logistical issues, I'd probably be exploring marijuana as an option. It's legal in this state. I just don't have easy access to cash or to transportation to any of the stores. I'm not willing to go online because I've got an extremely long list of things I can't have (when I tried CBD oil products, there was only one thing on the shelf that I could consume without getting ill). I can't smoke or vape due to asthma triggers.

We haven't had anyone in to clean in months. Cordelia's friend quit when her schedule got too full, and Scott said it was better not to spend the money ($20 a week). This unfortunately coincided with me becoming even less able to do cleaning. Scott's too overwhelmed and exhausted.

I suspect that, without the pandemic, I'd have noticed my loss of function/independence as a gradual thing. With the pandemic, I didn't really notice because I couldn't easily run errands or go to appointments or whatever for other reasons. We went out to dinner with Scott's family last week to celebrate our nephew's college graduation, and just sitting at the restaurant wiped me out for three days.

Scott will be going to UCon this weekend; I won't. He was a bit surprised, but when he thought about it, he realized that I was right about me going making both of us miserable. The convention changed their price structure, raising the weekend pass price, doing away with event fees, and doubling the number of hours of volunteering required to get a free weekend pass.

I had been thinking that I might pay the full price, run half the previously required hours of events, and see whether or not I was up to doing anything else. The last time there was an in-person UCon, I ran 8 hours of events and played 2 hours. My energy levels are unpredictable enough right now that running a 2 hour board game might wipe me out. Or it might not. There's no chance at all that I'm up to running a tabletop rpg. I enjoy those vastly more than I do board games, but they require a lot more energy to make them work, and I often don't notice until after just how exhausted I am. I also find hotel beds uncomfortable and can't safely eat the food on-site. There isn't anything I can do in the hotel room that I can't do more comfortably at home.

UCon is less than half an hour away from here by car, so Scott can get back quickly if I need him. It's the same sort of distance he'd have to travel to get here from work. That means I'm not particularly worried about being here alone. Well, not as long as we get a decent bit of grocery shopping in first.

I will have a lengthy post of fic announcements coming up soon. After that, I hope to catch up on some of my reading/watching logging in small bits. If I can post something small every day, I may be able to get back to posting regularly.

I'm not going to try to read things just yet, so I apologize for that in advance.

I was very out of it yesterday and didn't quite get around to an entry here. I couldn't focus well enough even to read. I was exhausted. I'm feeling considerably better today, but this cold has irritated my lungs a little, so I'm going to be using a steroidal inhaler for a little while.

Cordelia's school had a 'soft' lockdown yesterday. Apparently someone spotted a threatening message on the wall of one of the restrooms. The announcement over the PA system was badly worded in as much as it emphasized the 'This is not a drill' part and offered no reassurance that nobody was dead or hurt. They also didn't tell the students what had happened when they lifted the lockdown.

My sister has officially gotten an Ehlers-Danlos diagnosis. It's clinical rather than genetic. Her new doctor was sure enough to diagnose it at her first visit, and her ophthalmologist and dentist, on hearing the diagnosis, both looked it up and had aha moments about things that had previously been inexplicable.

I'm still going to pursue a diagnosis for myself. There are a couple of reasons for me to do that. The first is in hopes of getting better pain management and better management of various things that are associated with EDS-h. The second is so that Cordelia can have the information.

I'm several days behind on letsgetshitdone. I'm going to get further behind, too, because I have other things I need to do today and probably for the rest of the week.

I'm also trying to narrow down what to offer for Yuletide. I've got about fifty things that I could reasonably offer, and that's without looking at the 5 minute fandoms. The songs and music videos are almost all unknown to me, but some of them are likely things I could write.