stormdog: a woman with light skin and long brown hair that cascades over one shoulder. On her other side, she is holding a large plush shark against herself. She has pink fingernails and pink cat eye glasses (Default)
I can't help but wonder if any of the students at Miriam's final exam arrived high, given that it's 4/20.

The class is huge, so the exam is held in a gym along with another section, and so there were about 300 people there. There may be a more appropriate way to ask about accommodations than Miriam found, but the person she talked to about having a good chair and access to power for a heating pad said they didn't know how to do that. So I came with and brought my desk chair in for her. We also got a spot next to the AV equipment so she could plug in the pad. I think it will all be ok.

I hung out here for four hours reading manga while students wrote their comp-sci 110 finals.
stormdog: a woman with light skin and long brown hair that cascades over one shoulder. On her other side, she is holding a large plush shark against herself. She has pink fingernails and pink cat eye glasses (Default)
Other than that, I regret not writing here more and just putting lots of short bits on Facebook, but writing things at length requires more of some kind of energy than I usually have, and putting lots of short stuff here feels like it would be annoying. I'm not sure why that latter part is the case.

The second appointment with Miriam's new rheumatologist is coming up next week. It turns out that the labs who do bloodwork here just completely failed to do one of the tests the doctor requisitioned. We've tried to follow up with the doctor's office a couple times, and they have finally figured out that the test never got done. They contacted LifeLabs, the place that does the blood draws, and LifeLabs said that test was not ordered. This has happened before, so Miriam had a picture of the req form on her phone to send to the doctor, complete with a big red arrow pointing at the test.

But at this point, it's not going to be done before the appointment, and if this causes another month or two of delays in diagnosis and treatment, I'm going to be very angry. I fervently hope, if that's what happens, that the doctor will make a special appointment to follow up after the test, but I'm not holding my breath. Miriam has suggested that maybe her x-ray results are sufficient for a diagnosis already and that's why the office hasn't followed up yet, but I suspect that's wishful thinking.

---

She and I went out to a local winter festival here in Regina called Frost. There was a stand making maple syrup taffy: she wanted to share that with me since it was something she had on field trips growing up in Ontario and I'd never had it before. It was fun. It was tasty. But the experience was also sad. The limitations she has going to things like this just keep reminding me that things will quite possibly never be the same for her as they were before the progression of this illness, and by extension, very often will not be the same for me either. I miss just being able to do something as simple as go grocery shopping with her without worrying whether the activity will cause her pain for the rest of the day, or if she won't be able to stay with me in the store because of pain. We did go to CostCo together yesterday and it was a nice little trip. Some days and some activities are worse than others at different times and it's hard to know why.

The winter festival also had a few metal firepits going, burning wood and making a cheery warmth and glow. I caught the scent of woodsmoke once and felt a surge of fear and did my best to avoid them the rest of the time we were there. There's another way certain things may never be the same for me.

---

Despite the above few paragraphs, my mental health has been better of late. Regular attendance at the weekly online Still Coviding group I've been going to, regularly having a group of people who understand a big part of my situation in ways that most other people don't, has been a blessing.

I've been trying to connect with other folks in other ways, but without much success. I wrote someone who posted on the Reddit T4T community who is on the US west coast and described herself as a "Covid-conscious cutie looking for flirty friends." We exchanged a couple of messages, but I haven't heard back in a couple of days. She's a little over 10 years younger than me, so that may be an issue.

I posted on the Discord channel for the local trans support group. I said that it's been hard for me to attend the online meetings because health concerns for my partner mean I need to minimize Covid exposure, and it hurts to listen to people talking about all the things they're doing that I can't do. But, I said, being around just one or two people who are masking is an acceptable level of risk, and I would *love* to have a person or two to get together with and which anime once in a while. I got one message of sympathy and an offer to talk, but no interest in actually getting together.

I've looked at other posts on T4T lately, but haven't found anyone I felt like making contact with. It's funny; I am actively wishing for flirty/sexual connections with other people, and I'm a lot less demisexual than I once thought I was, but contacting people who seem to *just* be looking for people to sext with, or to get on video for sexytimes with, is not appealing. I need there to be *something, anything* beyond that. And the ages of most of the people posting there means my options are fairly limited. But I'm still looking.

---

My mental health has been good enough to get absorbed in a couple of hobbies. It's really good to break out of the vicious circle of mental health not being good enough to get absorbed in anything that's good for mental health. I got parts together to refurb the vacuum tube-based audio generator I bought from a Kijiji seller last year, but before they arrived in the mail, I got started on coding LED control algorithms. My friend Posi sent me hardware to do some of that after the fire happened, but I just hadn't been together enough to figure it out. We got on voice chat together and he walked me through setting up the software, soldering some wires to an Arduino and an LED strip, and basic use of existing libraries to make them light up.

Since then, I've spent a lot of hours writing code. I still have a lot to do and learn, but I did manage to finally get trans colors scrolling up and down on the front of the case the way I've imagined since putting this computer together more than a year ago, and it makes me happy. In general, my computer increasingly looks like unicorns and faeries are holding a rave in there and I am pleased. Here's a short video of one of the effects I have working:

https://www.youtube.com/shorts/fVvkrH4GTj8

---

CW: food/body/weight talk

I was managing my eating really well for quite some time, and am currently at my lowest weight since 2018 (which is still 40 pounds or so heavier than I would like) and I've been really happy about that. In the last week, though, I've had trouble again. I think it's possible that as this appointment for Miriam gets close, it's causing me a lot of stress, fear, anxiety, and anger at the medical system. It's so easy to use food to deal with those things.

---

Last but not least, I finally got that new piercing done that I've been planning to do with birthday/Chanukah money from Miriam's family back in November. I decided my mental health is finally good enough to take care of it, and I now have a helix done on my left ear. So many elf-girls in fantasy art have piercings in that area - probably a way for the artist to emphasize the exotic ear shape I suppose - and I want to have a pretty elf-girl piercing too. I'm also glad to have piercings connected to both my parents and Miriam's parents; that's really meaningful to me.
stormdog: a woman with light skin and long brown hair that cascades over one shoulder. On her other side, she is holding a large plush shark against herself. She has pink fingernails and pink cat eye glasses (Default)
A couple times, lately, the elevator where Miriam works has been out of service and she's had to take the stairs that cause her lasting pain when she has to navigate them with the stuff she has to bring. I know in the US it's a violation of the ADA to have an elevator that is out of service too frequently. I wonder what the limit is here and whether I could file a complaint. It's making me angry.
stormdog: a woman with light skin and long brown hair that cascades over one shoulder. On her other side, she is holding a large plush shark against herself. She has pink fingernails and pink cat eye glasses (Default)
Another example of Lyft and Uber discriminating against disabled people, and another reason I won't use them.

Miriam has a friend who has a service dog. Her local organization that arranges transportation services for the disabled sent her a Lyft to go to work. The driver wouldn't let her dog in the car. She was leaning in through the window explaining that he was legally required to take her and her dog as part of his contract with Lyft when he STARTED DRIVING AWAY WHILE SHE WAS STILL LEANING IN THE WINDOW. She wasn't hurt, fortunately.

She already had an existing legal case against Lyft for a previous case of discrimination, and Lyft and Uber drivers both do these things regularly and the companies themselves don't give a damn and don't do anything about this.

"Gig economy" businesses need to be regulated just like every other business, or banned entirely. Just like AirBNB.

I need to stop the work I'm doing for Miriam's class right now and take a break because I'm too angry to work efficently.
stormdog: (Geek)
You know how products that, at their core, are adaptive technology for the disabled have to be marketed as luxuries or conveniences in order to produce them on a large enough scale to be affordable? How things like electric can openers or reach extenders get made fun of as wastes of money for lazy people, when in fact they enable people to maintain aspects of their independence?

I feel like there is a parallel in computer interface technology. While it's not as crucial as whether or not someone is able to make dinner or pick up a dropped cup without help, people with certain kinds of chronic injuries (such as myself) have a lot of trouble dealing with prolonged use of typical computer interface devices. For me in particular, it makes it hard to engage in a lot of PC-based games, which are one of the only ways I've been able to be social sometimes.

And in my own experience, when I find something that works really well in letting me play games without aggravating my left wrist pain, it's often a peripheral that was made for a niche audience and which has gone out of production.

I'm hoping that, as gaming becomes a bigger and bigger market, devices that have unintended potential as adaptive technology will find a commensurately larger audience of buyers hoping to PwN the N00bS!!, allowing such devices to continue to be made at an affordable price and volume.

Some examples:

The Sandio 3D Game O2 mouse, with it's 3 integrated joysticks, was originally intended for use in manipulating designs in a 3D design environment. Later, as evinced by the name, Sandio started marketing it as a game accessory.

The software that came with the mouse was fairly limited., but I found a third party program written by someone in a position similar to mine that made the joystick/mouse to keyboard mapping vastly more flexible. I used it to replace holding my left hand endlessly over the WASD keys, a standard means of controlling motion in games, with a joystick under my right thumb.

I mapped a bunch of the other keys clustered in that part of the keyboard to the other joysticks. That mouse enabled me to play several games entirely one-handed, and it's hard to express how good it is to not have moderate wrist pain for hours while playing, or mild-to-moderate pain for a day or two after from overuse.

The Sandio 3D Game O2 was discontinued when I found it, but I got one on Ebay. While I was in the Netherlands, one joystick wore out. I saved the mouse, hoping I could solder a new joystick in eventually. Meanwhile, my parents bought another one for me that I saw on US Ebay and had it shipped to them. They brought it to Canada for me when they visited and it was so great to have it! Both of them burned in the fire. (https://www.ergocanada.com/products/mice/contoured/sandio/3d_game_o2/sandio_3DGameO2.html)

I actually bought a Lexip PU94 new in the Netherlands (I almost *never* buy new stuff) because it seemed like it could replace the Sandio. But the integrated joystick was just too hard to adjust correctly and use in the way I needed. It was a nice mouse otherwise, but I gave up on it as adaptive technology for chronic pain. (https://www.lexip.co/en/products/Pu94)

The interestingly named "Stinkyboard" was intended to replace holding your left hand over the WASD keys with foot motions and I think it would be perfect for me. I never did get to try this one: it's out of production and very hard to find. Here's a thread with disabled gamers discussing that product and talking about how helpful it is as adaptive technology and where to (hopefully) find it now that it's out of production. But adaptive technology isn't a big enough market to support a product on it's own, and I guess it didn't' take off with gamers.
https://www.reddit.com/r/disabledgamers/comments/ab2dcy/choice_of_foot_controllers/

Another form of adaptive technology I've used is programmable macro pads, especially from X-Keys. https://xkeys.com/xkeys.html They produce a 3-button footpedal and an array of different-sized keypads, all of which are programmable with proprietary software to emulate keys, mouse-clicks, and macros. Those are fabulous for a lot of repetitive, productivity tasks that might otherwise strain my wrist, but not so great for games because it's just a new kind of keyboard, basically.

I've used a Kinesis Advantage keyboard for something like 10 years now, and it's a big help. It offloads a lot of keypresses from my left pinky (which is one of the things that most aggravates my pain) and puts them onto the thumbs, which don't do anything but space on a regular keyboard. That combined with the reduced pronation of the wrist thanks to the shape means it still causes pain over time, but more slowly than a typical keyboard. My employer bought one for me, a decade and more back, and let me take it with when I left because no one else wanted it. It burned in the fire and a new one is going to be over $400, so it has to wait for the insurance, like all these other things I had. At least the Kinesis is definitely replaceable since it's stillin production. https://kinesis-ergo.com/shop/advantage2/

Another example of something that I think would be *amazing* for me is the DataHand. It would completely remove a lot of the tension of holding my arm and wrist in place, and the repeated finger motions of a regular keyboard. I have never seen one in person, or even on an Ebay listing. https://en.wikipedia.org/wiki/DataHand

Another device as phantasmal as the DataHand is the WarMouse. This is a perfect example becuase it was originally called the OpenOffice Mouse, and was intended to be a productivity tool for work processing. I have still never seen another mouse with this many buttons, and I've wanted one for years! It didn't catch on for the boring productivity use, so they tried gamers. No luck there either I guess; it's been out of production for a long time.

From this review: "The WarMouse Meta goes where no mouse has gone before. However, at the end of the day we can't help but wonder who could possibly remember how to use so many buttons on a single gadget. Sure, there's niche appeal for designers or gamers, but if you have $80 to spend on a mouse we'd honestly go with a more ergonomic option..." and the other options the suggest are not as functional as adaptive technology. Trust me: I could remember that many buttons if I used them consistently to avoid pain!
https://www.engadget.com/2010-05-03-warmouse-meta-review.html

All of these devices are far more expensive than typical peripherals because of the small user group, and many of them just can't seem to be produced affordably and disappear.

I'm considering pledging a current Kickstarter for another adaptive/gaming device called the Hedgehog. It's a mouse-like device that could potentially replace all the functions I use my left hand on a keyboard for. It won't be ready for as long as a year, but it has a lot of potential. https://www.kickstarter.com/projects/hedgehoggaming/the-hedgehog-gaming-mouse-and-controller

Maybe there will be enough gamers who find the Hedgehog useful in doing sick DPS in WoW or wherever that, for people who find such devices let them simply continue enjoying doing something they enjoy without experiencing serious pain, it will keep being made and available instead of turning into another device that exists in the form of long-term hope of it turning up on Ebay or Craigslist.

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stormdog: a woman with light skin and long brown hair that cascades over one shoulder. On her other side, she is holding a large plush shark against herself. She has pink fingernails and pink cat eye glasses (Default)
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