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Cordelia's officially done with physical therapy for now. She admitted to us yesterday that she hasn't been doing her exercises because she's been utterly exhausted, so I'm a bit worried about things going forward.

She made it to the GSA bowling party only about forty five minutes after it started. She said it was a lot of fun but that only four out of the six members of her school's group made it. It was a multi-school event, so there were still a lot of people there.

The eighth graders are at Greenfield Village today. That's an outdoor historical recreation(ish) space an hour or so away from here. There's a large museum there, too, but people tend to go to one or the other. My sixth grade class, back in the late 1970s, spent a day at Greenfield Village. We were all supposed to dress up in nineteenth century clothing (or as close as we could get) for a short stint in a one room schoolhouse. I had a granny dress, so I was set. Mrs Pattinson, who was a very tall, thin woman in her fifties (or possibly sixties), looked very impressive as I recall. I have no recollection of what anyone else wore. I'm pretty sure that we used slates and facsimile primers.

I have no idea what activities Cordelia and her classmates will be undertaking. I look forward to her telling me about it.

I'm going to be spending a lot of time on laundry for the next few days. I'm not at all enthusiastic about it, especially when it comes to tomorrow, but I haven't got a choice. Cordelia can help on Saturday and Sunday. Scott's ability to help depends on whether or not he has to work the weekend. It'll be five loads today (one done, one in the dryer, one in the wash, two waiting). I'm hoping that subsequent days will only require three loads as that's a lot less exhausting.

My hands are hurting a lot, so I'm wearing my heaviest splints. Those will make putting the fitted sheet on the bed a challenge, but I don't think I can do it at all without some sort of splint. Things haven't been this bad since I stopped the Tamoxifen at the beginning of April.

I'm trying to figure out which of my library books I can finish quickly. I'm done with the one book due this week that can't be renewed, and there aren't any due next week that can't be renewed. I would like to get through some of these books or, at least, to read enough of some of them to know I don't want to go further.

I have three phone calls I should make today. Sadly, the easy one is also the least urgent.
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We went to Blue Nile for dinner on Saturday. As usual, we got the vegetarian meal for three. When we get the version with meat, we don't eat enough of it to justify the added cost. The vegetarian version is tasty, filling, and what we really want when we go there. There was live music which isn't really our thing but wasn't terrible. Service wasn't great. We ended up waiting for five to ten minutes at a time on three different occasions. There seemed to be plenty of waitstaff, and they were by no means full, so I really don't know what was going on.

I sent patient portal messages on Saturday to the oncology nurse I see to discuss my decision to stay off of Tamoxifen and to the sleep disorders clinic to ask what I should do about the c-PAP. I am almost entirely sure that the problem is not the headgear. I have issues with being worried that I'll break the hose, disconnect the hose, bend it so that air can't get through, etc. I also have issues with feeling like I'm trapped by the machine itself. Taking off and putting on the headgear feels as insurmountable as sitting in the middle of a row in a crowded theater and desperately wanting to escape. (I felt this yesterday while sitting at my SIL's house because I was stuck in a corner and couldn't get out without getting several people to move. It's very stressful even when there's no reason for me to need to get up at all.)

Feminine TMI )

We spent about five hours at Scott's sister's house yesterday. We left much later than planned because everything we tried to do kind of blew up in our faces. Cordelia's back went out rather abruptly Saturday evening, and she was still hurting a bit by Sunday morning. She doesn't seem to have done anything at all to cause it, either.
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It's very frustrating that Scott set aside a day for me because of my birthday and all I can do is lie down with a hot water bottle pressed to my belly. And that's after taking naproxen to deal with the cramps. I know my body needs this, but my last period was in October. Couldn't this have happened last week? Or next week?

I finally stopped sneezing and such around 11 this morning. The key when this happens is for me to dehydrate myself which kind of freaks out people who are trying to take care of me. Most of the time, drinking more water is good when I'm sick, but this particular thing won't stop until I dry out enough.

I slept badly last night. Part of that was the runny nose (I didn't even try to use the c-PAP), part of that was the cramps, and part of it was different parts of my body wanting different temperatures. My upper body was cold, but I had to keep moving my feet out from under the blankets and shifting around to find cool spots on the bed for them. Sadly, no cool spot ever last more than about four seconds.

I took a cab to my appointment yesterday and then took the bus home afterward. I probably should have either taken a cab home or waited for Scott to pick me up. I almost missed my stop due to just completely spacing out with exhaustion. I did a little bit of walking around and playing Ingress after my appointment. I'd probably have done a little more, but Cordelia's after school meeting got canceled, and she was worried about where I was.
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I keep forgetting to mention this-- A week or two ago, I got an anonymous gift from Amazon. It's a portable charger thingy for my cell phone. Scott says he didn't send it, so I'm assuming someone here did. Thank you, whoever you are. It's a huge help.

Looking at the records on the c-PAP, I have a lot of not breathing episodes when I'm lying in bed but not yet asleep and not many at all when I'm actually asleep. That is, I put the rig on and lay down about 10:15 last night. When Scott came to bed an hour later, I hadn't slept yet, and I got up to use the bathroom. The c-PAP said I'd stopped breathing for at least ten seconds thirteen times during that hour. When Scott's alarm went off around 5:00, the c-PAP said that, including that first hour, I'd averaged 2.5 occasions of stopping breathing. When I got up at 6:30, after not really getting back to sleep, the average had gone up to 4.5 which implies a heck of a lot of incidents during that hour and fifteen minutes.

Sometimes the nasal pillows hurt last night, and sometimes they didn't. I took an Ativan Sunday before bed and didn't take one last night. I'm not sure if that made a difference. I'm not noticing a change in my quality of sleep so far. That might be due to not being used to the differences in how I need to lie with the rig on, and that might be due to not having timing work out for me to be in bed as long as I normally would be.

I did some minor chores yesterday (sorting and putting away a load of laundry, emptying the dishwasher, preparing food for myself), and that was enough to make my chest hurt. Bending over is a problem as are reaching and lifting. Extending my right arm to pick up a half empty box of tea bags is enough to hurt a good bit. Tylenol still helps, but I think I'm going to have to try to get in to see my primary care doctor.

I wrote about 1600 words yesterday. It was on a sequel to the story I wrote for Yuletide 2016. I'm a little annoyed with myself for starting something else, especially when I have no idea at all how to get to the bit that I actually want to write. This also doesn't connect to the other chapters that I wrote in November but didn't end up posting because there was incomplete story arc in them. I still don't quite know how to wrap up that arc. It needs at least one more chapter. I guess that, if I do finish both stories, I'll end up making them a three story arc with The Wisdom That You Brought.
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I checked the shelves at the library yesterday and didn't find the CD that's been missing for months or the one that just disappeared. My best guess that both of them have fallen somewhere, either here or at the library, where nobody looks. I've searched everywhere I can think of here at home with no luck, and the likely places at the library aren't in areas where I can look. The new missing CD, naturally, continues the streak of me only misplacing CDs that I didn't enjoy listening to. It also can't be renewed, so I guess I'll be paying for it next weekend.

Mom arrived yesterday pretty much on time at 10 a.m. We talked for a little while then got in our car and drove to Bob Evans. When we got home, Scott worked on assembling the new grill he bought (the grates on the old one rusted through, and replacing them proved more expensive than buying a new, less fancy grill) while Mom and I talked, and Cordelia and her friend went to their volunteer orientation at the science center.

Mom mentioned having seen and loved Firefly and Serenity. That felt weird to me because she's usually down on SF stuff because of it reminding her of my father. She also talked about my step-father having a very traumatic encounter with an alligator while he was out kayaking. He went out alone for reasons that my mother wasn't clear on. She thought that part was unwise. Then he went to an area where he hadn't been before, with deeper water, and started seeing very, very large alligators. There was one on the shore that spotted him, rolled into the water, swam over, and then reared up on its tail to look down at him. He was sure he was going to die. Mom says he didn't stop obsessing about it for days.

I asked if it was likely a nesting mother, and Mom said that the time of year is right and that the circumstances rather sound like it.

I told Mom about the Sgt Pepper's/Star Wars (A New Hope only) mashup videos that I ran into earlier this week, and she wants the link. Scott adored the videos even though he only recognized two or three of the songs. The whole thing is here on YouTube. It's the entire album, so it's longish. People who know the album tend to be more impressed, but people who don't can enjoy them, too. They're captioned, too, which is rare for such things.

I made banana bread while we were hanging out. It's been years since I made it routinely, but I still remember the recipe without needing to open Joy of Cooking. The amounts of everything, including the final batter, looked too small until I realized that I used to make two loaves at a time and wasn't this time. The banana bread made a good snack for when the girls got back from orientation.

Cordelia tells me that she and her friend weren't the only middle school kids at the orientation. She'd been worried about that. I think that the fact that the camp accepts thirteen year old volunteers and almost no other volunteer opportunities do probably skews their pool younger. Cordelia's planning out her summer schedule with shifts at the library and at Food Gatherers. I'd probably have scheduled the camp first because that's two chunks of a week each. I wouldn't want to make scheduling those harder by committing to days here and there through the summer. She's already trying to figure out if it's feasible to do camp the week of her dentist appointment. She'd get done at 4:00. The appointment is at 4:15. If her father is home to drive, it's doable. If he's not, it's really, really not.

I wrote almost 600 words yesterday on chapter 7 of Auguries of Innocence. It needs some tweaking because I ignored one of the characters present, but it's progress. That chapter has been sitting for quite a long time. I still want to go back to my Fandom5K, but I'm also still not sure my level of exhaustion is conducive to being sensible about editing that. The currently posted version works reasonably well, I think. It could be better, but if I'm not physically/mentally up to it, the results won't be horrible or embarrassing.

Last night's experience with the c-PAP was better. At least, it didn't hurt. The hose was still a serious PITA, and I think that a four is too high for the humidity setting at this time of year, but I actually slept. I'm just low on sleep because Scott didn't let me go back to sleep after he got up. I may nap after Cordelia leaves for school because only five hours of sleep is just begging for a migraine by bedtime.

None of us have appointments today. Cordelia has PT tomorrow. I have two appointments on Wednesday and one on Friday. I'm hoping that this will be less stressful than the last three weeks were and that we don't add more appointments on for next week. At any rate, I have all day today and a good chunk of tomorrow to myself. Thursday is cleaning lady day, so even though there aren't any appointments, I can't really relax.

My chest pain is getting better. I made it worse yesterday by carrying a basket of laundry from our room to the top of the basement stairs (I made Scott do the up and down the stairs part) and by doing a lot of bending over to get things off the floor that I didn't want to be there when Mom arrived.

My hands have been hurting more. I think part of the problem is that I'm picking up and moving more moderately heavy things (dishes, empty or full, and hardcover books are a problem that way) and trying to hold open paperbacks to read them. The OT people said I should just switch to audiobooks. I pointed out that we own more than 5000 books. I didn't go into the other issues with audiobooks-- price, time investment, inability to 'read' them while other people are watching TV in the same room (or, often, while there are other people in the house at all). The next suggestion was a book stand. I've looked at those online, and they look pretty iffy. I don't think that buying one without a chance to try it out would be a good idea because the ones most likely to work for me are pretty darned expensive. Also, for in bed, I'd want one thing and for in the living room quite another.
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The c-PAP last night was not a success. I put the 'discomfort' levels on par with walking home from the bus stop on a broken foot and sprained ankle. My skin actually felt like it was burning where the nasal pillows touched. I'm going to clean them, assuming I can find anything safely unscented that's also mild enough, and try again tonight. The nasal pillows I used at the sleep clinic didn't burn, so I'm hoping this is something that can be cleaned off. The weight of the hose was also painful if I slept on my side facing the machine, and the headgear is, sadly, designed to put velcro on my cheeks. I think I can deal with that last by wrapping it. I'm not sure with what, but there must be something.

I kept the rig on for about two hours, possibly slightly more. The first hour, I couldn't possibly have slept even if things had been comfortable because Scott was playing videos on his laptop (while next to me in bed) and because lights were on in the living room.

I wanted to stay in bed longer than I ended up doing this morning, but my mother had said she might drive over today, so more sleep wasn't a good option. As it happens, she's not coming until tomorrow (or maybe not at all. The check engine light is on in her car, and she doesn't want to drive two hours each way without being sure that the car will make it).

The A-Ride folks say, in their canned message, that one is supposed to allow an hour and a half to get to one's destination. Half an hour for the pick up window and an hour for travel time. It's a shared ride service, so it's entirely possible to need to go far out of the way to pick up or drop off other passengers. I've done six rides in the last two or three weeks. Two of them ended up shared. Every one of them, the driver arrived either before my pick up time or right on the dot. Yesterday, I was at Medequip eleven minutes after my pick up and forty nine minutes before my appointment.

Fortunately, the guy I was supposed to see was free to see me early. I was done by the time my appointment would have started if they'd stuck to the schedule. They don't have an actually waiting area. They tell people to sit on the various recliners that they offer for sale. I eyed those and realized that only one of them was actually the right size for me to be able to put my feet on the floor while sitting. That's out of probably twenty different chairs. Being 5'2" isn't that weird.

I tried to do some editing yesterday and discovered that I was too cranky to deal with my beta reader's perfectly reasonable comments without shooting back sharp comments. So I sent an apology and closed the documents.

Scott went out and picked up the library holds last night. I had one that was set to expire today, and we weren't sure there'd be time to get down there today if my mother visited. We'll still need to stop by there tomorrow, but even if Mom does visit, Sunday will be less filled with things that Scott has to do. Getting holds yesterday means dealing with two DVDs that can't be renewed. I suggested we try to get through them both today so that we don't have to take them back mid-week.

PT is claiming I was a no show on Thursday even though I called. They aren't open today, so I can't call and complain about that. I did call. I did leave a message. My cell phone shows I was on the phone with their number for a minute and a half at 6:30 a.m. on Thursday. I wouldn't argue if they said I didn't give them twenty four hours notice, but I was not a no show.

The chest pain is less than it was. Breathing is almost never hurting now, and that was the most worrying bit.
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Damn. I'm going to have to call UHS tomorrow and hope they can fit me in around my other appointments this week. The right side of my chest is hurting and has been getting worse for the last four days. Up until today, I was assuming it was a pulled muscle since it mostly hurt when I reached for things or picked up something hardcover book or full kettle heavy, but it's been hurting to breathe off and on today, and the part of my chest between the collarbone and the actual breast on the right side is tender to touch. The other areas that hurt when I move/breathe are not tender to the touch, but they very definitely go around the side and up into the armpit.

It might just be fibromyalgia fuckery, but it also might be an infection of some sort. I don't have a fever, at least, but I'm concerned about the feeling of pulled muscles in my chest when I breathe. The list of potential causes of right side chest pain that I found is almost all things that seem pretty unlikely because of the location.

An appointment tomorrow might work since my potential conflict is anything after 3 p.m. If they can get me in earlier, it might work. Or maybe Thursday afternoon. PT will end about 11:30 Thursday.
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Pretty much all venting )

The chores I did yesterday were enough to make the tendinitis act up again, so I'm not looking forward to the walking I'll have to do today. Right now, my plan is to take a cab to UHS, get lunch somewhere nearby after the appointment, hang out somewhere (Espresso Royale, probably) until about 2:00 and then get the bus to the hospital. PT is 2:45 to 3:45, so I'll just wait for Scott to be able to pick me up after work. I really ought to make a lunch and take it with me, but I don't want to deal with that.

I've tried ice on the tendon. That hurts all the way up my leg. Right now, I'm applying heat. That's making my calf muscle ache, too, but I'm hoping it will loosen the dratted thing up enough that I can stretch it properly.

My left elbow has started giving me trouble. The pain is at the back of the joint and fairly pinpoint. It is, sadly, probably more tendinitis. I think it's stress from trying to compensate for not using my hands in the ways I normally would.

I didn't go with Scott and Cordelia to Cordelia's PT appointment yesterday. I was so very, very tired that I thought that staying home was a good idea. I haven't generally had the option, so that was nice.

Scott's avoiding pork products now. I'm not sure if he's going to try one more time to make sure that he didn't just have a bug last weekend or if he's just cutting all of that permanently. I think that, if it is an allergy, one more exposure won't make it suddenly as bad as the beef allergy, but I know that such things get worse with more exposure, so this isn't going to be something he can indulge in occasionally.

I'm working on clearing out all of the frozen stuff we've got that contains pork. Scott buys potstickers and spring rolls frequently, and he never looks to see what's in them as long as they don't say 'beef' on the front. It's resulted a few times in me not having easy options for feeding Cordelia's Muslim friends, so I've learned to check the freezer ahead of when I expect to have them over to see if I need to make Scott go out and buy something that will be okay.
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Good news on the hysterosonogram-- No fibroids, no polyps. Things aren't quite right in ways that the doctors put down to the Tamoxifen, so they want me to have another scan (not clear if another hysterosonogram is needed or if a uterine ultrasound would be enough) in three or four months. I've got moderate sized (about 2 cm) simple ovarian cysts on both sides. If I understand correctly, because of my age and the size of the cysts, those will have to be rechecked every year unless they go away.

There's some confusion about the appointment I have scheduled for Wednesday morning. UHS's system doesn't show any such appointment ever existing, but the patient portal still shows me that I've got an appointment there at 10:50 Wednesday morning. It popped up with instructions for the appointment last night, and I still have the upcoming appointment reminder I got a few days back and the appointment scheduled message. I would rather not need to go to UHS Wednesday morning, but I also don't want to deal with a missed appointment fee or not go if the doctor has something to say.

I crashed hard yesterday at about 4:30. I don't think I slept, but I also wasn't awake. I lay in bed and didn't move much at all for about three hours until it was absolutely necessary for me to eat something and take my dinner time medications. After that, I ended up staying up until my normal bedtime.

I got a response from my email to Interlochen. They do have accessible cabins, and they supply golf carts for campers who can't manage all of the necessary walking (there's a lot of walking. Certainly more than Cordelia could manage day after day on crutches). My impression from what the contact person said is that they put in temporary ramps for whichever cabins need them, but I could be completely wrong.

Scott and I finished filling out most of the forms last night. There's one more that we need to get Cordelia's doctor to sign before we turn it in, but that one doesn't need to go in until June. I had been under the impression that it wasn't mandatory, but apparently it is. It's a permission slip for giving Cordelia specific OTC medications as needed. The form says they'll only do it twice a month without specific other forms from the doctor filled out for each occasion which seems kind of silly for something like, say, ibuprofen for menstrual cramps.

I need to do some laundry today, and the trash needs to go out. I've already done several minor chores, so I'm resting a bit. I kind of want a nap, but I think I need water more than I need sleep because I had very little water yesterday.

I have some ideas for things I can add onto my Fandom5K to make it work better. My first reader pointed out that there's a good bit of time between the deadline Saturday and the reveal, so I can edit if I come up with more text or change things or whatever. I'm very used to thinking of posting deadlines as the end. One of the changes I should make will be painful because it will involve changing POV for some events and losing a few lines that I love. I don't usually have to do the killing my darlings thing, but this time, I need to.

The OT yesterday showed me some hand flexibility exercises. She also showed me some massage techniques for my hand and then told me that I can't do them because the pressure required would be bad for the thumb on the hand doing the massage. Given that, I'm not quite sure what the point of showing me was. I've got a short list of (hopefully) not too expensive things that might help with the exercises or with tasks that I need to do.

She had a pen that she thought might be easier for me to use. Sadly, I couldn't even get it all the way to the paper. It was too long for me to hold it the way I was supposed to, and the way I need to rest my hand to deal with the tremor was an issue, too. Basically, the things I do to work around the tremor actively conflict with the things I should do for the osteoarthritis. Since I can't write at all without dealing with the tremor and can cope with the osteoarthritis long enough to, say, address an envelope, the tremor coping techniques win.

She also showed me their pain scale which doesn't even remotely match mine. For me, pain bad enough to provoke swearing is a six or a seven. Pain bad enough to want to take medication and/or to be constantly aware of it is a three. For them, swearing is a nine, and medication/awareness is a five to a six. I kind of looked at the chart and thought that it was really for people who don't normally experience pain. It basically stretches out the lower end and has no room at the top for severe pain. I've always assumed that anything that hurt enough to rate a ten would kill me because my body couldn't handle it and that a nine meant pain so bad I passed out or mentally checked out in some other way.

ETA: And the nurse from the gynecology clinic just called to say that, oh, she was wrong and I do have an appointment tomorrow. She thinks I should keep it, and I think her reasoning is sound. If nothing else, I can get clarification about what additional scans I need when and see about scheduling anything that needs doing soon. I think that I would also like the gynecologist to talk to the oncology folks. The pain issues had inclined me heavily toward not going back to the Tamoxifen, and I think this is more on that side of the scale. I'm also kind of curious as to why the radiology report said I was post-menopausal when everyone else keeps saying that I'm not there yet (all of them use 'perimenopausal' except my primary care doctor who hates the term while still acknowledging it as a stage of life. I think she considers it too medically imprecise to be useful).
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I’ve got half an hour until the point when the A-Ride cab might arrive. I think I’ve gotten the absolutely essential pre-cleaning lady chores done. I hope so because I’m probably not going to have time between when I get home and when she arrives.

After PT yesterday, [personal profile] evalerie and I had lunch at Juicy Kitchen which is a hole in the wall vegetarian place out on Maple Road. The menu is small and leans heavily on eggs, so there were a lot things I just couldn’t eat. I had a dish with mushrooms, sweet potatoes, kale, and quinoa in some sort of vinegar that I quite enjoyed.

I did six loads of laundry yesterday. Today, I think I’ll get away with three, and one’s drying while a second is washing.

We only had one person over last night. Two of the other people were sick, and the third had something going on for the older of his two kids and Science Olympiad. I tried to go to bed at 9:00, but Cordelia kept checking on me until she went to bed at 10:00. I didn’t actually sleep until after Scott came to bed and (finally!) shut down his laptop.

I slept pretty soundly. When Scott’s alarm went off, my lower back was hurting, and I’m not sure why. It has to have been the position I slept in or the level of inflation of my side of the bed.

I have two appointments today— OT at a new location with, I hope, someone who actually does what I need. Then, I need to get to central campus to see my primary care doctor. I’m kind of spacing out on what I should talk to my PCP about. When I made the appointment in February, I was wanting PT for my Achille’s tendon and OT for my hands.

Medequip called yesterday, but I was on my way to PT, so I couldn’t even think about scheduling. They’re not willing to see me at any point when Scott would be available. I will have to dig up a phone number for them and try to call them later. (They called me from a generic number that all parts of the UMHS use to mask their real phone number. One can’t actually get anywhere by calling it back.)
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I got up long enough this morning to give Cordelia her medicine and then went back to bed. I didn’t manage to sleep until after Cordelia left at 7:50. I need to remember to ask her to keep the volume low on the TV. Closing the bedroom door helps not at all. At any rate, I slept about another two hours, a bit fitfully but still two more hours.

Apart from being low on sleep and kind of stressed over everything that needs doing, I’m feeling a hell of a lot better since I stopped the Tamoxifen. As I said to my SIL yesterday, I’m not suddenly getting spikes of pain in my hands that make me scream any longer. My hands still hurt, but it’s more low level and constant which I can deal with better. The Achille’s tendon hurts a lot more, and I’m not quite sure what to do about that.

Scott was still feeling a bit icky when he got up this morning. I’ve texted him to see how he’s holding up now. I think we’ll stick with fish and poultry for him this week and then maybe try some pork when he’s got a clear weekend.

Our nephew is pretty much confirmed as an Eagle Scout. They’re waiting on the official word from National, but the review board approved him, so National is a rubber stamp. His current plan for fall is to attend the community college near us (we live about half an hour away from their family) and then transfer two Michigan State in the winter. I don’t know that him going to school a short distance away will mean us seeing him more often, but I’ve told his mother that I’d be happy to feed him lunches or whatever. I suppose I should actually talk to him about it directly.

Cordelia tried her aunt’s green bean casserole and tells us that she very much wants to have it again. I thought it was horribly bland and tasteless, but… I can make that if it’s something Cordelia will enjoy and actually eat.

Today’s primary goal is to fill out the forms for high school choir camp. The deadline for getting those forms in is Wednesday. I had thought it would be much, much later and so hadn’t even looked at what needs doing. Scott says that we can— just— afford the camp. It will entirely devour our tax refund, though. I need to call or email the teacher in charge because I have questions I need answered before I commit $470. It would suck majorly to spend the money and then find that Cordelia couldn’t go because of needing accommodations.
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Yesterday was a good news/bad news deal.

The very good news is that the uterine biopsy results came back early and are clean. This means going ahead with the HSG which sounds moderately unpleasant, but I prefer that (and the chance that that might be clean, too) to the alternative.

Venting about OT )

I've got PT at 10 this morning. I'm taking the bus to get there, but I might take a cab back. I would like to be able to do something after the appointment beyond collapsing and staring at the walls. Especially since there's still a chance that Cordelia's friends might come over for movie watching tonight.

I'm putting another thing on my to do list-- I need to write down the things I have trouble with, due to hand pain, so that I know exactly what things I want to address. The two catalogs I have only contain two useful looking adaptive devices, and we already own both. (Seriously, handle weighted silverware would be a terrible idea. I already have trouble with what we have weight-wise because chunky handles were in the year we got married. We got the lightest handles available, but they're heavy and unpleasantly thick. Oh, and apparently there's something terribly wrong with me that I find big things harder to grasp than thin things.) Most of the ones that might apply to my situation are aimed at food preparation and eating and look like they would make both infinitely harder than the pain does.

Yesterday also contained some school related WTF? in terms of PTO emails. At 8:00 a.m., they sent out a message announcing that they want to do a middle school fun night next week on Friday and need volunteers. At 2:30 that afternoon, they sent out a second message saying that they would have to cancel the fun night if they didn't get more volunteers immediately. School runs from 8:00 until 3:00. No parent would have had the opportunity to ask their child or children if they wanted to go. Almost all parents would have been at work during that window, too, and might not have access to personal email or personal calendars or time to consult with partners about plans or to set up babysitting for younger kids or... Well, it's seriously WTF? They couldn't wait twenty four hours for the second email? Or send out the initial announcement with more than 6.5 hours before their panic point?

Cordelia doesn't want to go. I rather expected that. I probably wouldn't have volunteered anyway because there's a chance I'm going to be wrecked by the time we get to evening that day. Also, I can't stand for long, can't do much with my hands, and generally can't do things right now. The jobs they were talking about needing to fill pretty much all involved two or three hours of standing.

Scott considered signing up because they want someone to run boardgames, but with Cordelia not going and with us not knowing what sort of state I'll be in, he decided it wasn't a good idea.
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Getting to the hospital by bus didn't cause me too many problems in terms of pain, but getting home again was much harder. By the time I got home, I was utterly exhausted, and my Achille's tendon hurt even when I wasn't walking or standing. I iced it and did as little as possible all evening. I had intended to wash my hair, but I didn't think I could stand up long enough to manage that.

The physical therapist is male. He used the same office that the woman I saw for lymphedema did. He was perfectly willing to address both back and tendinitis, but that is apparently making bureaucratic problems that have the clerical support staff unhappy with both of us. There was a little weirdness with him telling me that all sorts of long standing diagnoses weren't in my medical record. I have no idea what was going on with that. The fibromyalgia diagnosis, for example, goes back to 1987, and I've been in this medical system since fall of 1985.

I have two calf stretches to do regularly. I tried one last night, but the tendon was hurting so much that I couldn't. The other requires setting up something I can safely stand on that's a couple of inches off the ground and positioned so that I can hold onto something for support. The PT suggested stairs but only stairs with railings on both sides. Our basement stairs don't have that. Also, he seemed to want me to get my heels down to the floor while keeping the balls of my feet on the raised surface. I don't think there're many (any?) human beings capable of doing that on a standard set of household stairs. Scott's suggestion is a stack of hardcover RPG books. They're big enough and won't, we hope, slide.

Things are still hurting. I'm pretty sure that the calf muscle is knotted badly. I'm trying to figure out a good way to massage that. The best I've been able to do is to apply pressure with my other foot. I can manage a fair amount of pressure that way, but it's kind of hard to target. Experience says that tennis balls don't work worth a damn because I can't get into a position where I can put enough pressure on one to have it be useful. I strongly suspect that getting to and from the hospital by bus will make the ultrasound treatments the PT wants to give me pointless.

I tried to call my grandmother last night to wish her a happy birthday, but the phone rang and rang and rang. She lives with my aunt and uncle and their seventeen year old granddaughter, so I'm not worried in that respect, but it seems very odd because I know they have an answering machine. I'm planning to try again in about three hours. If I still can't get an answer, I'll email my cousin who lives in the same town so that he can find out if they're having phone problems (or tell me if the number has changed).

I've promised Scott that I'll watch Agents of SHIELD with him when I'm less stressed. He really likes the series but isn't willing to watch it alone. I'm not sure why he feels that way about it given that he watches other things alone. Possibly he's just feeling off balance because I've been leaving the living room most evenings for the last few months. That's because I'm too tired to cope. I'm not sure what to do to change that.

Today's main goal is to finish that letter I started. The secondary goal is to figure out how I'm getting to and from PT tomorrow. I also need to wash my hair and to do an assortment of things to prepare for the cleaning lady's arrival. I usually do most of that last during the hour before she arrives, but I'll be at OT during that time.

I'm kind of tempted to nap instead.
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Health related stress )

Anyway, between this and having a fic to write, I probably won't be answering comments with any regularity until the end of the month or so.
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I spent a lot of yesterday afternoon and evening on the verge of tears for no reason I could figure out. Maybe it’s something hormonal? I don’t know. I haven’t had a full period since October, and goodness knows things in that direction are out of whack due to my age and medications. It was just completely out of the blue, and I really wanted Scott to help me out, but I couldn’t seem to get him to understand or to remember.

This morning, I had a very definite anxiety dream— I had gone back to college and registered for classes, but I didn’t know which ones I’d gotten or where or when they met. Supposedly, I could find that information out online, but I didn’t know the right commands to get the computer to do anything at all. Oh, and the computer was green on black in terms of text display. I haven’t used anything like that in about twenty five years.

I think, weirdly, that having Scott and Cordelia both in the house constantly all week has added to my stress. I love them dearly, but… When they’re at home, I end up rearranging everything in order to accommodate them without them being accommodating in return.

But having them go back to school and work will be vastly difficult for me, too.

We’re still trying to figure out the bedside table problem. I don’t have a c-PAP yet, but I will very, very soon, and I’m going to need a place to put it and to put all of the stuff I currently keep there. Scott is talking about taking out my bookshelves entirely, but I’m reluctant. I use those shelves for things I’m currently using for fic or think I will soon, for things I haven’t read yet, for reference books, and for library books. Everything that was there that I’m willing to store in the basement has already gone downstairs.

Oh, and I use those shelves for my lotion and deodorant and hairbrush and a couple of medications that I often need at night… There’s also a specific spot where I put medical paperwork that I won’t need for a few days or weeks or longer but need to be able to find immediately the day of the appointment or whatever. We keep games and puzzles on the shelves, too, and really don’t have any other place for them. I think Scott assumes we can just get rid of most of that stuff, but if I was willing to, I would have already. Yes, they’re games I’m not likely to play again, but they’re also the specific copies of those games that I played a lot as a child and teenager. I used to play solitaire Scrabble a lot because no one would play with me. That may not be reason to keep the game, but… I want to.

As my back hurts less, my tendinitis is becoming noticeable again. My back hurt so much for a while that I just no longer felt the tendinitis. I hoped it had really gone, but it hadn’t. The noise from my back was just drowning it out.

Last night, my face and upper chest both started itching horribly. It was quite sudden, and I couldn’t figure out a cause. It felt a lot like I’d been rubbing those parts of my body with wool non-stop for ten or fifteen minutes, so I suspected allergies. I ended up washing and then taking benadryl and slathering on hydrocortisone. That was enough to let me sleep moderately well, but bits of my face still itch this morning. I don’t see any rash or swelling (a little damage from me scratching but nothing else) apart from the rash around my eyes that I’ve had since September. I haven’t put anything new/different on my face or hair. We’re still using fragrance and dye free laundry detergent.
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Scott picked up sushi from Totoro for me and Cordelia last night. Apparently, they have three or four types of California rolls. The regular and the spicy both have cucumber which makes me sick. I need the 'special California roll' which is just avocado and crab salad. I had one of those and a vegetable roll containing cooked zucchini, asparagus, and sweet potato. I think there was tempura on the zucchini.

My back is definitely still messed up, but I can sit on the couch for a while now, and getting up and sitting down is no longer horrifically painful. It was at the point before, where my body would just stop and refuse to go further.

I didn’t finish either the graphic novel due yesterday (I’m going to pay the fine. It seemed silly to ask Scott to make a trip out just to avoid a twenty five cent fine) or the DVD due today. For the graphic novel, it’s a combination of not being able to comfortably read it without my reading glasses on and it being a superhero comic. I bounce off almost all superhero comics. I think what I really want is for someone else to read this one and give me a detailed synopsis.

I wrote 2200 words yesterday. It was all on chapter nine of We Are Where We Began, so I’m a little annoyed with myself about that because I really, really need to work on my Fandom5K story. That has a due date, and I’m past the no penalty default date. I’ve got a blobby shape of a story in my head and really need to write to find the actual shape of the thing.

I spent most of yesterday in bed even though I wasn’t hurting as badly as I had been. I discovered that lying on my right side makes my back worse but that lying on my left side is relatively neutral in that regard. Sadly, lying on my left side hurts my neck more, but a low grade headache is better than the back pain.

Today, we’ve got errands to run. I need to be along for one of them, the one that will take the most time, so I think I’m stuck with all of them. Cordelia and her friends want a copy of From Up on Poppy Hill for Friday, but all of the library’s copies are checked out. One is due tomorrow, so it might come back in time. I wonder if I can persuade Cordelia to take the bus downtown to pick it up on her own? It’s spring break, so she has plenty of time.
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I think maybe my back is starting to get better. I really hope that that’s the case because this pain thing sucks.

My right hand, however, is getting worse. I had to ask Scott to help me brush my hair this morning, and there have been days when I couldn’t floss. The giant braces might help the hair brushing problem, but they also might not because they make gripping and turning things the way I need to too difficult. I mentioned maybe chopping my hair, and Scott thought it might help, but I’m not sure it would because most of the knots I wake up with are high up on my head. I think I’d have to get my head shaved to avoid them.

I also don’t want to do something as radical as chopping off my hair until I know whether or not the problem is as simple to solve as stopping the Tamoxifen. I need to talk to my doctors about that. I’m not sure if it’s something I can stop for a while to see if the pain problems get better and go back to if the pain doesn’t improve. At this point, I’m pretty certain that the Tamoxifen is not worthwhile if it’s giving me this much pain— Five years of taking it will decrease my risk of recurrence by 4%, and the oncologist said that even a year would decrease the risk a bit. I’ve been taking the stuff since December of 2015.

4% is not worth five years of pain. (The baseline risk for me is 10%.)

I need to get Scott to empty the clean dishes out of the bottom rack of the dishwasher (I did most of the top) and to put away the things that require bending. I need him to bring the clean laundry and the clean sheets upstairs. I also asked him two days ago to look for something in the basement (I have a reacher/grabber thing that will let me pick up some things without bending. I’m 90% sure it fell down the basement stairs a few months back, so it’s down there somewhere).

Today is one of the days of the year when going to downtown or campus is decidedly unwise. It’s the Hash Bash, and there will be thousands of people wandering around (and taking up the parking spaces).

Scott’s very conservative aunt just friended me on Facebook. Ah, well, if she hadn’t realized that I’m a flaming liberal, she wasn’t paying attention. And it’s not like I post much. One surprise is that one of my aunts has turned out to be a lot more liberal than I thought she was— She’s reblogging Bernie Sanders stuff. I mean 80% of what she posts is cute dog pictures and pleas for people to adopt/sponsor dogs, but there is some political stuff, all things I can get on board with.

Today’s goal is to finish and return a graphic novel that’s due today and can’t be renewed. Then I work on the Korean DVD that’s due tomorrow and can’t be renewed. Then I write. I would like to watch some things with Scott in the living room, but I still can’t sit there for more than about fifteen minutes at a time without my back feeling worse so not today.

I talked to Scott’s mother yesterday and to my step-father. My mother was in Florida through some time yesterday in order to sell her father’s house, so I didn’t actually talk to her. My step-father says she’ll only be in Michigan for a week in April. I’d been under the impression that it would be much longer than that. I guess I can’t count on seeing her. Pity she’s not up here this week. Both of them will come north some time in May, after my step-father’s semester ends.
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The nurse practitioner I saw yesterday referred me to PT. PT can’t get me in until the 12th. She also gave me some exercises which I have looked at and laughed at because many of them require putting weight on my hands and/or kneeling, neither of which I can do due to other problems or require pieces of furniture that we don’t own. All of our chairs but one are lightweight folding chairs, and I’m very unenthusiastic about using those as a base for exercise. I’m also worried that, if I get down on the floor, I won’t be able to get up again.

She also ordered x-rays and thought she saw something worrying in them. The report from the radiologist that came in today said everything looks as expected and, oh, by the way, those are cholecystectomy (gall bladder removal) clips, so I’m assuming that those are what worried her. She was very concerned about the possibility that this is the beginning of something dire. She asked a lot of questions with a neurological/cognitive bent and wanted to know about my recent bowel movements.

Scott has decided that he has to call in tomorrow. He says that the combination of my back with Cordelia’s appointment and Expo means he really, really needs to be home. Him being home in the morning will make it more likely that I’ll be together enough to get him to move the things in the kitchen that I’ve been wanting him to. I can’t reach the lower shelves of the refrigerator, for example, and the shelves where we keep our canned goods are too low for me. I can get what’s right at the front of the top shelf but not anything else.

I’m finding lying flat on my back vastly tedious. I can’t easily type while in that position. Lying on my side doesn’t hurt, but after I do that for even a minute or two, I can’t sit up or stand without severe pain. If I’ve been flat on my back, I can do both with minor trouble.

I’m feeling so very, very tired, enough so that I’m wondering if I should default on Fandom5K. I don’t know if this will be better in two or three days or if it will take weeks. I’ve never defaulted on an exchange, and I quite like the idea I’m working on, but… I don’t know.
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The timing on this back thing is really pretty terrible. I’ve found three things that help at all: lying flat on my back, alcohol, and a heating pad applied to exactly the right place. All three of those remedies are very temporary, and all have drawbacks. The heating pad is unpleasant given my general state of being overheated (I’ve been applying cold packs to other parts of my body, and I’ve got the ceiling fan going). Alcohol also makes me feel overheated, like the temperature in here has gone up at least fifteen degrees. Lying flat means about all I can do is listen to audiobooks. I’ve got a lot of those on my laptop, but I want to do other things.

I suspect that sitting in the living room might be better for me than sitting or reclining in bed, but of all things, the access to electrical outlets is the deciding factor. I can only plug in the heating pad out there if I unplug something else, and the powerstrip is on the floor, so swapping plugs is agony even when I’m feeling my current best.

In a little bit, I’ll call UHS to see if they can get me in today. I need approximately an hour to get there by cab (most of that is wiggle room for the cab to arrive. The actual drive is under ten minutes), and I need to be home by 2:00, so timing is difficult. I kind of suspect that there won’t be much that anyone can do, medication wise, but there might be some stretches or something else PT-ish.

I’ve put myself on hiatus in Habitica until my back is better. I just can’t manage everything right now. I thought about simply deactivating the dailies that are currently physically impossible, but that would remove a lot of them.

Feedly updated again last night and still doesn’t work. I’m more than a little ticked about that given that I’ll be out of the house some today. Reading those blog posts fills some time.

I wrote about 2600 words last night, and about a third of that was my thing with a deadline. I still don’t have the character voice the way I want it, but whatever. Get the words down then edit and edit and edit.
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Cordelia stopped using crutches entirely over the weekend. Today, she’s trying school in a light knee brace. She carried all of her things to school and didn’t want me along.

That last was just as well because my back spasmed last night and is still giving me huge problems when I move. I can sit as long as I sit still. I can lie down as long as I don’t change position much. It’s going to make the various household chores I want to get done today problematic. Right now, I’m applying heat to see if that will loosen things enough for me to do anything. It’s the muscles in my lower back, the ones just at and above my pelvis. When I stand up from sitting or lying down, when I sit down, when I turn over in bed, when I bend at all, that area hurts at about a 7 on the pain scale.

Last night, while I was showering, my right hand got so painful that I couldn’t move it at all. I’d call it an 8 or a 9 on the pain scale. It was better if I didn’t so much as wiggle my fingers. That made the process of drying off… interesting. I thought I was going to have to yell for Scott to come help me. My left hand hurt more than usual then, too. I couldn’t even put lotion on my leg without agony. I thought I should be able to because I could just use my fingers and not my thumb and because I had my heavy braces on.

The combination of the hands and the back has me wondering if I did something full body stupid. I can’t think what apart from, you know, taking Tamoxifen.

Feedly, one of the apps I use most on my phone, updated last night and now no longer works at all. Well, I can see that there are articles waiting for me to read them and what the titles and sites involved are. I just can’t open them at all no matter what avenues I try, including forcing the app to quit and restarting it.

We got bubble tea yesterday after our library trip. That was a nice treat. I miss having it weekly, but it is expensive. I’m pretty sure the price has gone up since we were last in there.

I wrote almost 1300 words last night. Sadly, none of them were for the thing with a deadline (though I just now added a sentence to that). I’m having trouble finding the character voice for that because I’m trying to write a character I don’t sympathize with at all. There’s just not much beyond cardboard cutout for the character in canon. I suppose that adding depth to the character that isn’t in canon isn’t a terrible thing. I just worry that it may not be what my recipient wants.

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