the_rck

My leg is very slowly getting better. It still feels badly bruised, and even light touches hurt a lot, but it doesn't look bruised. When I hurt my ankle, back in May, it also felt (and still does now) bruised but never showed it. I have no idea what's going on with it all.

I can see some swelling but not a lot. I've been using an Ace bandage, off and on. That helps, off and on. My main conclusion is that knees are awkward. I can't wrap the knee proper or anything above it because that will just slide down the moment I stand up. I have this problem with braces/wraps intended for knees, too. I bought some with the idea that they'd help with stairs, and they kind of do, but I have to reposition them about three times for a single trip to the basement. At least, I do if I want them to be useful.

Scott has done the laundry this weekend because neither of us want me to try the stairs yet.

( Meanderings about library books and story structure )

We've gotten me a walker with a seat. I only found one model that could handle my weight, and it has a lot of drawbacks that we're still figuring out how to work around. I suspect that we aren't going to find anything with fewer issues, different ones, maybe but not fewer.

I'm not using it as a walker. I can't because I can't put weight through the palms of my hands or my wrists/elbows/shoulders. I'll never be able to use a walker or a cane or crutches of any sort.

The wheels move well enough that I can keep it going with my index fingers. The difficulty is that, no matter how I push the walker, the vibration of the wheels on concrete and asphalt hurts every joint in my hands and wrists. I have one set of splints that helps, but they hurt differently and are both bright pink and difficult to wash.

We've added padding to the handles in hopes of mitigating the problem, but I can only walk for a few minutes before I have to stop and rest my hands. I can limit the vibrational pain by placing my fists on top of the handles and holding my wrists rigid directly over them, but my elbows and shoulders don't like the resulting awkwardness in how I stand. I can't tolerate that contortion for any longer than I can tolerate the vibration. I suppose that combining them extends my pushing time.

I'm pretty sure that rubber wheels would help at least a little. The current wheels are hard plastic. I'm not sure replacing them is feasible, though. I'll ask Scott to look into it because he'd have to do the work.

The walker doesn't have any sort of brake that can be set before sitting. There are hand brakes that are for-- Well, I have no idea what. Do people actually use walkers in a way that would make hand brakes (which are not reachable when one is seated) a desirable feature?

Pulling the walker along after me by hooking fingers on the crossbar involves a lot less vibration (but not none) but decreases my ability to steer and to otherwise control the walker. It ends up banging into my heels a lot.

I've taken the walker out four times since we got it, and I really would like to use it more. Having the ability to sit whenever I need to would help vastly because sitting for a while and then walking again is the best way to tell the difference between my muscles being wobbly but more or less fine and my muscles being wobbly because I'm on the verge of longer term damage. I won't be able to use it on grass (which I hesitate to walk on anyway because I turn my ankles way too often) or on any of the walking trails around here (those are too narrow). Part of the reason for the ramp out back is for me to be able to get the walker to the driveway without having to pick it up.

(I probably could if I didn't use my hands, but it's heavier than I hoped for when I started looking.)

I don't think that me taking walks again will do anything about my blood sugar; it never did before. It's just that it would be amazing to have the option to walk without worrying about getting stuck three blocks from home because I had to sit on the ground and now am not sure I can get up and walk home.

The walker also won't be useful if there's any ice/snow as I won't be able to rely on clear pavement for it unless I'm in the street (and even then...). The lack of brakes will mean that parking it for sitting can only happen where the pavement is completely clear.

I ordered some rubber doorstop wedges to put under the wheels for when I stop and am not sure of the incline (one of the necessary Amazon purchases last week). Friction is of limited help if the incline is more than a few degrees. There's a storage bag under the seat, and I'm thinking I could carry the wedges there. They're not that expensive, not for proof of concept. If necessary, I can get something better once I know that wedging the wheels is feasible.

My feet don't reach the ground when I sit on the walker seat. They do land nicely at the right height to rest on top of the wheels on that side, and I'm hoping that that will also provide some braking.

Using the handles and pushing the walker in front of me, even if it's with one hand or with a single finger on each hand, helps my balance a bit. Usually, for that, I rely on the weight of my purse or a bag hanging from my elbow, forearm, or hand. Three plus pounds on one side or the other or on both keeps my mid-back from wobbling in ways that make each step considerably harder and increase the odds of negative post-walk effects.

I haven't worked out the best way to carry my purse with the walker. I can tell that it will be a challenge, so I haven't tried it yet. I expect to need to tomorrow.

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 )

I'm going to try to update here more frequently and with something more than fic announcements and media logging (and I'm behind on the media logging). I think that part of me not posting has been me feeling like I have nothing to say that isn't depressing. Part of it is, also, very definitely, that writing about the things that stress me out makes me upset.

And not in the 'it will be better after I get it out' way.

Scott and I are fully vaccinated with the second dose having happened on the 7th of April. Cordelia has her second dose on the 1st of May.

Scott and I drove an hour each way, crossing state lines into Ohio, for our vaccine. The folks running the site said they were getting a lot of people doing that. The main drawback was that we had to photograph our vaccination cards and send the image to our doctors rather than having the vaccination site able to put it into our state's database.

( Cordelia. End of senior year of high school and plans for college )

Cordelia's next try at the driver's license test will happen two days after her 18th birthday. I pushed for earlier, but she and Scott resisted both practicing and scheduling. I think that the scheduling actually happened when I pointed out that it would be better to pay for a license rather than for a state I.D. when she turns 18 and then a license later. She has to have one or the other for several things that we need to do before she goes to college.

The A-Ride people approved my card renewal. They also told me that, next time, I won't need to get the medical half of the form filled out. My disabilities are now clearly things that will only get worse rather than having the potential to change for the better. This is... Getting the medical half of the forms dealt with is a PITA, but I'm also unhappy to have to look directly at my increasing disability.

I know that it's there, and I've talked (very briefly) to Scott about it. We can't do much about it right now because I adamantly don't want to include Cordelia in the discussions. I don't want her to think there's a reason for her not to go away for college or that she will need to come back here afterward.

( My physical health or, rather, lack thereof )

I've told Scott that we need to do some sort of couples counseling around how we deal with my disability because the ways we're currently handling it aren't emotionally sustainable for either of us. We just can't do it until either Cordelia moves out or we can go to appointments in person, leaving her at home. Some of the problem is communication styles (Scott was raised in ask communication whereas I was raised with offer), and some of the problem is how much of our life he's going to be carrying and how unfair it is to both of us. I don't think that any of that is stuff we can manage without help.

Life has been fairly uneventful during the last few months. I'm in a lot of pain and very much need PT/OT for half a dozen different things. I think it will be six months, best case, before that's an option.

I'm also still having issues with vertigo. Moving my head enough to look at a shelf above eye level or to kiss Scott (he's a foot taller than I am) is enough to make me light headed. Turning over in bed provokes a strong reaction which isn't out and out unpleasant only because there's no risk that I'll fall.

I'm just being very careful. I can walk around okay and even go up and down the basement stairs safely (I just keep a hand on the rail and don't carry anything I can't drop).

Cordelia is strongly leaning toward going to Michigan State next year (or the year after if things are still locked down). The main questions relate to paying for it.

We've been doing very laid back Christmas preparations. We'll be staying home, but there will be Zoom calls. (We do weekly Zoom calls with Scott's parents and his siblings and their families.)

I kind of vaguely want to write and post another three fics by the end of the year so that I finish with 200 stories on AO3. I don't know that I'll find the focus for it, though. I've written that many stories in that sort of window before, but I don't feel motivated right now (possibly because it's 2 a.m.).

Kroger did substitute on our grocery order. We didn't end up with anything that will kill Scott, but one or two of the substitutions are things none of us will eat in place of things only I will eat. The ease of pickup was helpful, but us being able to read the labels matters a lot.

I haven't checked the bread yet, so I don't know if I'll be using the bread maker tomorrow.

And we didn't get any of the things that Scott habitually checks for to see if there are any sales. I don't have that list in my head, and I found the Kroger website horribly frustrating (and it crashed for 20 minutes while I was working).

I have a bit of a back up in terms of DVDs I need to watch and return to the library. I ended up not watching anything last week so that I could listen to some Overdrive audiobooks. Fortunately, the season set due today was renewable. I just have to get myself to turn on the TV.

I may have overdone things today. My wrists are bad, and my back is threatening to dump me face-first on the floor if I'm not sufficiently careful when walking.

The wrists are probably mostly down to having read a hardcover from the library, 450 pages in the last 48 hours. I typed a good bit yesterday, too.

I'm less sure about my back. I stripped the bed. I've washed three loads of laundry. None of those have come upstairs yet, so that's not a factor. Scott helped me get the fitted sheet on the bed, and I've managed the pillowcases. I haven't tried to deal with my flat sheet and blankets yet. (Scott and I have sufficiently different needs in terms of comfortable sleeping temperatures that we don't share flat sheets and blankets. It's just now because I'm constantly too warm instead of because I'm constantly too cold.)

Scott did the grocery and library pick up today. He mowed the lawn which required shifting all of the stuff in the front yard.

We're in that annoying state between summer and full on fall when I can't predict whether or not having the ceiling fan on over night will be a necessity or a misery. Scott generally doesn't have trouble either way. I do, but getting out of bed to flip the switch requires taking off my c-pap gear and then putting it back on again. Also, turning the fan on risks turning the overhead light on because I'm not likely to remember whether or not the light was on.

Fan and light are on the same switch, and I can't reach the cord for the fan. The light has a long pull cord so that I can find it in any light and so that I can reach it at all. We've discussed alternatives for the fan pull cord that will still make it obvious which is which, but Scott can reach it when he's standing at the sides or the foot of the bed, so I don't think he quite gets how difficult it is for me to reach. It's also something that's an issue for a few weeks every year, non-consecutive weeks even.

The household repair I most desperately want, though, is new back steps. The current ones are decaying from the inside out, and bits that look safe to step on have given out under our feet. Snow and ice will not improve footing. Scott says he wants to get something custom made, something wooden instead of concrete. Given cider season, though, I don't know that we'll be able to do anything before spring.

I've tried looking online to see what can be done about steps, but neither Lowe's nor Home Depot have been helpful. I very much don't want stackable pieces because that's what we have now. The top step has wobbled for years, and I'm nearly certain that's due to the same freeze-thaw cycles that destroy local roads and sidewalks.

I'd like to ban use of the back steps entirely until we have a replacement, but I'm not convinced that either Scott or Cordelia will listen to me.

( I figured out some things about my hands and wrists )

We're still waiting for the replacement laptop that Scott ordered for me. It's a little fraught because we don't actually know whether or not it will be feasible for me to use it. Mostly, I'm concerned that it's not as wide as my current model and may not accommodate my hands and wrists properly, let alone my hands and wrists with the heavy braces.

I'm not sure what we do if it won't work because we can't find anything as wide or as robust as my current laptop. We've been coaxing this one along for quite a while because Apple wasn't making anything that would be better for me.

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

( Cut for length )

So the cold turned into bronchitis. There was some risk that I had pertussis as it's around in the schools right now. My having gotten exposed in the middle of September's run of prednisone was entirely likely as I accompanied Cordelia to her physical and could easily have picked it up in the waiting room.

We ended up going to urgent care last week for the cough. The clinician there took a sample for the pertussis culture and then freaked out because me having antibiotic allergies meant that her check list of things to do didn't work. She had no idea what to do. She gave me more prednisone, this time at a much higher dose, but kept asking if I was really sure I was allergic to Augmentin and Zithromax because her checklist said she needed to give me prophylactic antibiotics while we waited the week it would take to the culture results.

The second run of prednisone made me feel much worse which was terrifying. I felt like I was never going to feel any better because each dose was worse. Fortunately, I started feeling noticeably better once I finished the five days. Pretty immediately so. I ended up seeing a doctor at UHS that same day, though. There's not much to do at this point but to rest and hope to feel better quickly.

I haven't been able to use my c-pap in a couple of weeks because it makes me choke and cough. I had a few nights when I was afraid to fall asleep. I breathed much better when lying flat on my back, but I wasn't breathing strongly and worried about sleep making that slower/weaker. I cut my sleeping medications entirely for a while and then went to 25% of my normal dose.

My current plan is to try the c-pap tonight and see how it goes. Scott's not working tomorrow, so if it doesn't work, he'll still be able to get a reasonable night of sleep. I'd probably have tried it a night or two ago, but he worked Wednesday through Friday.

( Talk about my hand issues )

I think I'm not going to sign up for Yuletide. I'm not 100% sure that I'll be able to prepare the scenarios I've committed to for UCon. I don't want to make any other promises at this point.

My LTD appeal is still in process. I need to proofread, edit, and sign a statement that my mother has drafted for me. I simply haven't been able to cope with it this month.

Scott's going to be working 2nd shift from the second week of November onward. He says it's temporary, but I'm worried that it won't be. Him working 3 p.m. to 11 p.m. will be incredibly awkward even short term, and it will mean that he and Cordelia don't see each other at all during the week. It will also mean that I'll need to sleep roughly 2 a.m. to noon and won't have any time when I can be noisy.

My hands and wrists were very cranky with me last night. I think I’m noticing it more because the prednisone lowered my pain levels for almost a week.

I’m still wobbly and having issues with my ears feeling blocked. I’m not all the way to dizzy, but I am at a point where I feel unsafe without a wall or counter or something else solid within a step or two. Heat helps with the drainage and so do certain ways of sitting/lying. Sadly, the useful ways of sitting make other things hurt. As far as I can tell, the problem is mostly muscle tightness in my jaw and neck. Sudafed and mucinex help considerably less than heat does, and the blocked feeling doesn't include pain, so I'm currently assuming it's purely mechanical.

I’m not sure I’m going to sign up for Yuletide this year. I’m feeling overwhelmed without taking that on. I love the exchange, and I got some amazing stories last year, but I don’t know if I can write anything to order right now. Maybe I can treat, but I think it's entirely likely that I'll not write anything new during the remaining months of this year.

Of course, some of this is me looking at the nomination coordination posts and not seeing things I’d want to offer. I tend to feel discouraged during early Yuletide discussions anyway simply because there are so many things I've never heard of or already know I'm not likely to enjoy. I might nominate a couple of popular for Yuletide fandoms that I'd like to treat in order to free up other people to nominate less popular things, and I'll look at the 5 minute fandom requests once the tagset is complete.

Mom came to town Monday afternoon. She rented a small apartment outside of town. She spent most of Tuesday trying to get her computer (brought from their house on the other side of the state) to admit that the rental's WiFi existed. She got that late on Tuesday by plugging her phone into the computer. She's not sure why that helped given that the phone doesn't have any sort of data plan.

She spent most of yesterday afternoon asking me and Scott questions about things I can and can't do and about the times when I respond irrationally (Scott and Cordelia agree that I do that much more than I thought I did. I don't actually necessarily notice when I have done it, though, so they're more likely to be correct than I am.)

I think I need to explain that my agoraphobia has two branches. The first is fear that I'm going to misjudge what my body can handle and fall or otherwise injure myself. Historically speaking, I've done this a few times a year. The less I go out, the less it happens. Any plan for going out also has to include a plan for what I do if my body breaks on me, for how I get home if I can't breathe or can't see or can't walk or can't spend more that a few minutes away from a toilet.

The second fear is that I'm going to get upset or be surprised by something and not be able to handle it without raising my voice and/or punching someone. I haven't punched anyone since I was about 12, but when I'm panicking, my physical and mental energy shifts to attack mode. It's much harder to walk away from an interaction with a clerk in a store or with a bus passenger than it is to walk away from an email or chat exchange.

It’s not so much that I’m afraid of going out and/or being in places with a lot of people. I’m afraid of the side effects of me getting surprised. Places with more people have more likelihood for me not to be able to withdraw or to put my strategies for retreat/self-protection into effect. There’s also more likelihood that I’ll be startled and respond without thinking.

I don’t like dense crowds because they make me helpless to take care of myself. The people are obstacles rather than threats.

Scott's work schedule is kind of ridiculous. Monday and Tuesday, he worked 12 hours on the factory floor. He had yesterday and today off (I think he has tomorrow off too) but will work 12 hours both days during the weekend. It's going to be 12 hour shifts with odd days off up through Thanksgiving (which makes UCon an iffy proposition. He's scheduled to work the Friday, and I'm supposed to run a game that morning. Probably the best solution is going to be me getting a room for Thursday night). He's finding the work physically exhausting in ways that worry me. There's a dangling possibility that he might be able to go back to scheduling if he can reach the point of that not wrecking him psychologically, but I hate to hope for it because it really was bad for him.

The coworker (now back on the factory floor) who had the scheduler job before Scott has told Scott that he, too, had a panic attack during his first cider season. Not too surprisingly, this makes me more frustrated with the company.

I need to see if I can get Scott out of bed. It's 11 a.m., and I need to make phone calls. I'd rather not do them while he's home, but that would mean delaying them about a week since none of them can be made outside of business hours. I also can't, in good conscience, make them while he's asleep because I get loud. I can't really put off the call to the dentist because I need a note from them by early next week and because they're closed on Fridays.