Apr. 1st, 2017

the_rck: (Default)
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.
the_rck: (Default)
All of the CampNaNo writing advice posts in the last few days have been full of things that make me flinch because doing any of them would make writing impossible for me. For example, today’s advice is to make the delete key unusable. I touch type. I’m moderately fast, varying between about 40 wpm and 60 wpm, but that includes about five backspace corrections per minute, too. If I can’t make those, I produce gibberish because the more I worry about not making typos, the more typos occur.

Admittedly, when I’m making things up as I go along, I tend toward the slower end of my scale, but I definitely don’t want to slow down beyond that.

Is it just that most people don’t touch type any more? I really adore the delete key because it’s so much easier and faster than correction tape or an eraser or whatever other method I had to use when I used a typewriter. My wpm rating went way up when I started being able to correct rapidly (without word count penalty) and no longer needed to worry about carriage returns.
the_rck: (Default)
I just tried Flaredown which I saw linked either on DW or LJ, and it can’t quite do what I want. It’s trying to get there, I think, but it really, really isn’t yet. I don’t know if what I want doesn’t exist or if I just don’t know the right keywords to pry it out of the vastness of the internet. My suspicion is the former, given Flaredown still being a work in progress.

Flaredown is designed for daily or less frequent check ins, and I rather want the option for as many check ins per day as that day calls for. Trying to remember dozens of different things from the previous day every morning just seems like too much. It would also be useful to see things like whether I do better with phone calls if I space them out the way I do physical activity or if it’s better to do two or three in rapid succession.

Flaredown tracks all symptoms by a five or six point scale from no problem with that at all to major problems with that. It’s useful information but doesn’t give me a way to track how many times some particular thing happened in a day.

For months now, I’ve been wanting something that would let me track about thirty different things, health-wise, plus subcategories for some of them, to see if I can spot patterns. All the programs I’ve seen, apart from Flaredown, are set up to track a scant handful of things and won’t let me see the sorts of connections I want without me doing a lot of work to make connections and chart things myself. All of this health related stuff interacts, so it’s extremely hard to figure out what’s a problem and what isn’t and what’s a secondary or tertiary factor.

I really don’t want to use ten different apps and then try to coordinate the data manually or to keep text records and then try to mine them for connections myself. The harder I have to work for it, the less likely I am to keep it up.

I don’t need a medication management program or a cycle tracking program or any of the other things I’ve been able to find. Tracking food, for example, is only helpful if I can link it to reflux, sleep, fatigue, IBS symptoms, rashes, headaches, and anxiety levels. And I want to link each of those things to each other and to exercise and passing illnesses and the weather and caffeine intake and… I want to be able to track what parts of my body hurt and how much and when it gets better or worse or if anything sets off my asthma or if I fall or otherwise injure myself.

I also want to track anxiety levels, stressors, time outside of the house, chores accomplished (since they take physical resources), menstrual stuff, my weight, breast self-exams, occasional medications, new medications, and likely things I’m not thinking of.

For a lot of the categories in the two paragraphs above, I want to track more than one thing about them. Exercise, for example, requires duration, time of day, and how I feel afterward. Headaches need type, possible triggers, time of onset, pain level, additional effects like nausea or sensitivity to odors, medications tried and whether or not they helped, and ultimate duration of the pain.

My incomplete dream list of things to track )

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