the_rck

Most of the last several years has been my physical functioning declining steadily but in ways that either don't respond to normal treatment or that have treatments that that aggravate other physical problems I have.

Since 2016, I've lost somewhere between 70% and 80% of my hand function. I can still type, and I can still do some things on my phone, but my ability to do anything at all goes downhill as the day progresses and my pain levels get higher. I don't think that my doctor is actually listening about the hand function because she's chosen to focus on my blood sugar as the primary thing.

My hands, she says, will feel better if we get my blood sugar under control. I do not think that's how osteoarthritis works. I really don't.

Also, I think that, if she were actually serious about the blood sugar control, she'd have given me a testing kit years ago instead of just assuming that my a1C tells all. I can't tell what helps/hurts in the short term, and I'm prone to physical exhaustion and mental issues that are helped by food (exponential improvement from food relative to improvement by sleep or rest) and not affected by caffeine or by hydration.

I've asked about a testing kit, but she keeps putting me off. Right now, she's saying that only an endocrinologist can do something in that direction. I'm pretty sure that's bullshit because the prick the finger testing kits are pretty basic equipment.

I don't particularly want to have to prick my fingers, and the hand issues might be a problem, both the tremor and the osteoarthritis, but we need more nuanced information. I'd really like to know where my blood sugar is when I'm experiencing certain physical and mental symptoms.

( Cut for discussion of medication side effects, both physical and emotional )

Thursday did not go well, over all. I had a weird and abrupt allergic reaction without any clear cause. I started coughing and having trouble breathing. I used Primatene mist for the first time (the allergist I saw a few months back recommended it. He suspected that I was having laryngeospasms from the rosemary and thought that might help and that the Primatene might be a decent option for a rescue inhaler in case of asthma since I can't take albuterol). That got me breathing again, but my face and my hands itched, and so did the roof of my mouth. At that point, I took Benadryl and naproxen which helped.

The only thing that had happened right before was that Scott reheated some turkey bacon in the microwave. We're both dubious about that as the cause since he cooked in on Sunday without me having issues. I even ate some of it then. We just couldn't come up with anything else that happened or that changed right then. The previous thing in the microwave was me preparing my lunch earlier that day.

I retreated to the bedroom, and Scott opened the living room windows. Every time I went into the living room after the Primatene, breathing got harder again, so fresh air was necessary. After 15-20 minutes, I was able to go back to the living room again.

The whole thing was terrifying. The fact that we really don't know what caused it makes it more so.

The Primatene left me utterly exhausted even before I took the Benadryl. Every part of my body just slowed down. I have the impression that that's not the typical reaction. The warnings are more about anxiety, tremors, and racing heart.

I felt fine 2-3 hours later.

It's been a long month. I suspect that July will feel longer still.

( Cut for length )

We ordered food from Totoro today. They're on GrubHub now rather than just asking that people pickup purchases. Scott probably would have gone to pick up food there if I'd asked, but their location is awkward for that because parking nearby is difficult. Pickup would really need two people, one to drive and orbit the block, the other to run in and get the food.

Scott did go and pick up a bubble tea order. We placed it online and paid that way. Then they assigned us a time to enter the shop to get our tea for carry out. I didn't go along, nor did Cordelia. I don't think it's something we'll do often.

Scott has taken the day off for my birthday. Tomorrow, he goes back on first shift, hopefully permanently. I expect the transition to be awkward for him and for me because we'll need to go to bed so much earlier. It will also throw my eating schedule into disarray again. We've been trying to shift things over the long weekend, but I don't think we're even close.

I'm seriously considering trying to stay up in the living room after Scott goes to bed. I might be better off doing that, especially if I can make the transition out there earlier than 10 p.m. That's Scott's target time for going to bed, but he's often watching shows that don't end before that or otherwise distracted enough to lose track of the time. I usually stay in the bedroom because I'm not interested in his shows or in Cordelia's.

Moving out there feels like a huge chore, though, and I tend to have more neck/back trouble when I sit on the couch than when I sit on the bed. On the other hand, my laptop is much happier on the table that I use out there than it is in the bedroom; it's less prone to overheating.

We're starting to consider a laptop and printer and such for Cordelia to take to college in 2021. There's sufficient money in her savings account to cover the expense, and I'd much rather spend it before we do the FAFSA paperwork. The money's Social Security that she's received based on my disability and is meant to pay for her living expenses.

(We currently use a bit more than half of it every month to help with household expenses. The rest stays in the account and comes out when we have unexpected expenses like the sewer line replacement or the furnace or what-have-you. I'm not sure how we'll adjust to the sudden disappearance of that money when she turns 18, especially when it will come with needing to deal with college expenses.)

My hands have been quite bad the last week. I've been tempted to put a sock on my right hand to discourage me from trying to grasp things with my thumb. My left hand is doing better, but I suspect that that's largely because I'm right handed and keep trying to do things on that side instead of on the left.

After a week of using the gel for rosacea, the rash on my face, neck, and shoulders is unchanged. The rash on my arms is worse. We took some pictures of my face, neck, and chest to send to my primary care doctor, but I haven't sent them yet. The rash on my chest still looks as bad as it did in terms of redness but has flattened. I think the rosacea medication had something to do with that.

We had a guy in last week to do the AC tuneup. That was straightforward enough. Cordelia stayed in her room. Scott and I wore masks. The technician wore a mask. He was the same guy who usually comes, so we didn't have to show him where things were which made keeping a safer distance more feasible. The company did check in ahead of time to ask if anyone in the house was sick.

Scott's family is kind of pushing for some sort of face to face gathering. We've been putting them off because I really can't handle doing it outside and because Scott is a potential vector for infection. Between work and shopping, he's going out at least six times a week. I really don't think his parents understand that the risk is real.

I haven't done much writing recently. I keep starting up other tasks and telling myself that I'll get to the writing soon. I need to remember that 'soon' is not actually a firm measure of time. I have an exchange assignment due soon and it's somehow not writing itself.

I'm fighting a migraine today. I had it all day yesterday. I took Amerge twice and naproxen and Tylenol at different times. I also showered and applied cold packs. The cold helped most. Pressure on specific parts of my neck and skull helped, too.

I took extra halcion when I went to bed, and I slept pretty solidly for ten hours. I still had the headache when I woke, though. It's not quite as bad today, but it's not good. I also slept okay Sunday night into Monday morning, not great but not horribly.

Food and caffeine haven't reliably helped. I still feel like my brain is bashing itself against the inside of my skull, trying to get out.

Cordelia and I ordered delivery from Red Robin this evening because I hoped that a burger would help. It did help for about forty five minutes. Sadly, it's not a thing I can repeat at that sort of interval.

I'm about three quarters of the way to the minimum word count for one of my exchange stories. I'm fighting with it because parts of it want to be in present tense and others in past. I also don't have a plot yet. I would really like to write more today, but I don't think this migraine will help me along at all.

I'm thinking to sign up for the WIP Big Bang. I've narrowed it down to four options. All of them seem possible but also have down sides. I'm pretty sure which of the four would win the poll here if I made one, but it's the one that would be the most difficult to complete. Having narrowed things down to four options is an achievement since the list started with twenty WIP that I was confident would run longer than the 7500 word minimum.

I'm also considering Into a Bar, but I don't know that I have the mental energy to commit to anything of the sort. I still have an incomplete assignment from a previous year of the challenge. Maybe I'll just see if I can write that by the deadline.

My sinuses decided to throw a hissy fit yesterday. They do this a couple of times a month for reasons I've never been able to pinpoint. It happens often enough that Scott and Cordelia just make sure that I have a box of tissues and a place to throw out the dirty ones. Generally speaking, the only thing that stops this is dehydrating myself, so I think I'll be drinking mostly black tea today.

I've taken Claritin, Benadryl, and Sudafed. I've also got the furnace fan running even when the furnace isn't, just in case it's a matter of unfiltered air from outside. I don't think it is because it snowed yesterday, but I figure that having the fan on won't hurt anything.

Over the weekend, I roasted chickpeas from a bag of dried chickpeas. It took a lot more time and effort than working from canned chickpeas does. I soaked them for six hours. The instructions on the bag said to simmer them, so I did. At the point when I could stick a fork through them, they still tasted raw, so I cooked them longer. That's really the part of the process that I think will make me keep going back to canned chickpeas because it needs regular checking/supervision.

At least I've established that I can used the dried if I need to.

Scott and Cordelia went driving for about an hour last night. They saw a lot of deer, and that's when it snowed, so it was kind of stressful for Cordelia, but I think it's good that she now has some experience with both of those things.

We need to look into having Cordelia take the SAT. Normally, that's done as the school district's standardized testing of the high school juniors and happens during the normal school day on the district's dime. That almost certainly won't happen this year. I haven't researched the options yet because, until we have a better idea of the time frame, planning something like that doesn't make any sense.

I'm currently exploring some of the public library's music downloads. I'm frustrated by the utter lack of cataloguing for all of the available downloads (books, music, video) because all I have to go on is cover image, artist name, and title. There aren't any genre tags or blurbs. The books are more difficult because I can't sample them easily and because they tend to be badly formatted. At least with the music, I can stream a song or two and move on.

I just don't think it's unreasonable for me to want some broad category information. I know that cataloguing is resource intensive and expensive and not a thing the library does in-house any more, but... Telling me if an album is jazz or classical harp music doesn't seem like a really large thing. Telling me if a book is horror or mystery or romance also doesn't seem like an unreasonable request.

I've also been listening to audiobooks, but I keep hitting unexpected sex scenes and really not wanting to share those with the rest of the household (no, earphones/earbuds are not an option). Audiobooks also don't accommodate skipping around in the story which is something that I do with paper books to decrease my anxiety.

Audio and video both tend to make me feel kind of trapped and unable to control my experience and interaction with the text. I'm apt to stop, walk away, and not come back for months which interacts badly with Overdrive and with getting DVDs from the library.

Scott's got vacation scheduled next week (to coincide with Cordelia's spring break). Right now, we're assuming that it will happen, but I think that could change if anyone at work gets sick. I'm also not convinced that Scott will be back on 1st shift after his vacation. He might be, but he also might not be. His plant being essential infrastructure means that they can reasonably ask for employees to do things that they wouldn't ordinarily.

I guess we'll see.

It's been a long month. I've written a few posts and then not gotten around to posting them. At this point, I'd have to edit so extensively that it doesn't seem worth my time to make an effort to get those to the point of being postable.

( The disability review/appeal stuff )

Earlier this month, evalerie came over and provided help and moral support while Scott and I got everything out of the bathroom cupboards and I decided what to keep and what went where. I think we got rid of more than half of what was in there, possibly as much as 75% of it.

I now know where everything is in there, and our cleaning lady is no longer putting things I need in places I can't reach.

( The eye related stuff )

( Experimenting with workarounds for physical issues )

( Scott's )

I'm a little frustrated because I have a very small window of time when I'm alone in the house and can work on things I find physically difficult or can easily watch DVDs or listen to CDs or audiobooks. (No, headphones, earbuds, etc. are not an option.) The watching and listening thing is not helped by the fact that the CD/DVD drive on my laptop has decided to die. Judging by how it sounds and what happens, I suspect a mechanical failure.

( Computer stuff )

The bloodwork before my doctor's appointment last week shows that my A1c is up, so I'm going to have to work on that. Being able to go outside would help considerably. At this point, I can handle the bright light, but ice underfoot is still potentially an issue. I usually fall due to ice at least once each winter, and I would really rather avoid it if I can.

I have one exchange assignment still to complete. Chocolate Box 2020 is due on the 7th of February, and I've barely started writing. I have an unrevealed story in the Past Imperfect collection. I've also got a list of a dozen one shot WIP that I think I might be able to finish if I just give them a hard push for a few days. My current plan is to work on those rather than signing up for any other exchanges. I may take pinch hits or write treats, but I'd very much like to get these things done and posted.

I've gotten a couple of 'it's so sad this will never be finished' comments on Rheotaxis this month. It's made me look at it and wonder if I ever will go back to it. I know how it ends (I have a draft of a final chapter so I know where I'm aiming). I know what happens after. It's just been years since I worked on it. My style has changed a good bit, and I still don't know how to make that next chapter work.

I spent yesterday rereading an rp that hopeofdawn and I did years and years ago. It was a post-Rheotaxis thing, and I think it was a good story. We never finished it because the things we were interested in playing out diverged too much (I like writing claustrophobic discussion scenes, and she likes writing action scenes).

I'm a little tempted to see if I could pummel those chapters into something postable on AO3 or if Hope would be interested in working on it with me. I'm not sure it would work well because rp relies on the head hopping being okay. The scenes would lose a lot from being put into a single limited 3rd person POV, and I'm not good at putting that sort of thing into an omniscient 3rd. There are also gaps in the story that we left because they would have involved one person writing solo due to which characters each of us wrote.

I don't know if anyone would want to read that even if I did write it up. I don't know if I could come up with an ending that was even remotely satisfying.

I feel like there are a lot of interesting stories out there that don't end up archived because they're written as an rp narrative.

I slept much better last night. I had a hard time falling asleep, even with a full tablet of Halcion, but I stayed asleep until about 8 a.m. when Scott and Cordelia got up. (They needed to be at the school at 9:30 on their way to leaf raking in order to raise money for the choir.) I considered trying to sleep more, but it took them a long time to get everything together and leave. I was too awake by then to go back to sleep without taking more Halcion.

I can take up to 2 tablets of Halcion; I'd just prefer not to end up needing that much every day again. I think that part of the problem yesterday morning was that I didn't have a half tablet of it to take when I woke with the migraine. I was hoping that I wouldn't need it because I didn't expect anything to keep me awake for longer than a trip to the bathroom.

I tried the split dose Tuesday into Wednesday, Wednesday into Thursday, and Thursday into Friday. It helped. A half tablet of Halcion will help me sleep for 3-4 hours. A full tablet gets me 6-7. Using only a half tablet leaves me more aware of my physical pain and discomfort. My wrists bother me enough to make sleep harder. I need to avoid any bend at all for them.

I'm having problems with dizziness/vertigo this weekend. I can tell that it's a problem with my ears. If I apply pressure in the right ways, things start to drain, but I can't keep that up. An electric heating pad works better, and I seem to get about half an hour after prolonged application when I can walk around without feeling like I need to lean on the wall.

I'm having some luck with mucinex today. I'm hoping that that will be enough to make doing necessary things this week more feasible. It's not just my balance that's off. I'm muddling dates and words and forgetting things that I considered five minutes before.

I need to figure out some schedule related things for tomorrow. Scott will likely be working 7 a.m. to 7 p.m. Cordelia has a choir rehearsal that might run late enough that getting the city bus home will be difficult but by no means late enough that her father picking her up will work.

My mother will arrive at some unspecified time, possibly early enough to help, possibly not. She doesn't know that I've been sick, so I need to explain that part.

I'm not sure if I'll do Yuletide this year. I have no enthusiasm for it at the moment. I've also got two stories to edit, one to write (for my Fandom Trumps Hate auction winner), and two game scenarios to write for UCon. Right at the moment, I don't want to do any of it because I can't track things correctly. I'm worried that I'll build in contradictions/weird logic errors without noticing that I'm doing it.

For the moment, I'm listening to audiobooks and looking at how far behind I've fallen on my book logging. I don't know that I'll remember the books after or actually do anything about the logging, but... It's almost like doing something.

On the semi-plus side, the prednisone has made my hands hurt less. I'm trying to enjoy that while it lasts. The tremor has been bad, though, bad enough that texting takes three times as long as it should and that I can't use Chrome on my phone. My fingers move in ways that the interface interprets as commands.

I'm going to try to do a bunch of smaller updates because, each time I look at trying to sum up what's going on and what's happened, I stall out without starting or start and don't finish.

So, summer of 2019 has sucked and has gotten worse as the weeks passed. I think that the combination of anxiety and pain with the meds I'm taking to deal with both (propranolol, wellbutrin, Tylenol, CBD (both oral and topical), and naproxen) is making it hard for me to focus enough to get anything done. Not that I'd likely get anything done without the meds. I just might feel less as if this instant in time is unconnected to anything else.

Basically, it's really hard to get myself to start anything or to keep going after I do. It doesn't feel like depression so much as it feels like a very pleasant mental disconnection. I'm kind of wondering if the CBD oil that I bought at Plum Market still contains some residual THC. The disconnection is much pleasanter than the physical pain, though, and that's bad enough that I can't do things because I can't get my hands to cooperate.

I have an appointment with orthopedics about my hands tomorrow. I don't think the appointment will do anything except get me another appointment. From what they said three years ago, the only remaining intervention is surgery which might help pain but also might decrease function. I might get decreased function with no relief from the pain.

I'm also not sure that surgery will be an option given the likelihood that I have EDS-h. I healed okay from gallbladder surgery and from the lumpectomy, but this is a joint. If surgery is a viable option, I would go for my left hand (I'm right handed) and see how that healed. My definition of decreased function might be different from that being used by the medical folks. If I simply stop getting spikes of pain in the middle of doing things like brushing my teeth, I would consider that increased function even if my grip is weaker.