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Nov. 11th, 2019 08:23 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
the_rckThe weather has gotten very nasty today. One of Cordelia's friends got into an accident while driving to school (I'm pretty sure that the other girl has zero experience with snow because she just moved north this year). Scott left for work half an hour early and arrived late anyway.
Cordelia's school let out twenty minutes early which I think was meant to help keep the buses more or less on schedule for the middle school students and then the elementary school students as the same buses transport all three age groups, just at different times of day. I'm not sure if the early release gained the buses much time. Cordelia didn't reach her stop particularly early relative to the normal arrival time.
I'm not sure what the weather is going to look like tomorrow. I have an appointment with the LTD vocational counselor at 10:30, but if the roads are still bad, he may opt not to drive to Ann Arbor. My benefits run out on the 24th, and the only reason we're meeting is so that I'm compliant enough to keep them. I don't pay him; the LTD insurance management company does.
I would like to go to a FAFSA information night at one of the high schools tomorrow evening. I'm not thrilled by the prospect, but I doubt the one in December (at Cordelia's school) will have better weather, and the one in January will likely also be bad that way. The one in January is probably the best as far as bus access because it's the school closest to downtown. I wouldn't want to walk from downtown, but I could. There are lights and crosswalks and sidewalks.
I wanted Scott to go with me to one of these because he's the one who'll need to gather all of the necessary information. I just can't wait and attend a session next fall because, if it's not done by the end of July, it won't get done before December (or, more likely, February).
We're probably going to have to find a professional to advise us. I can't find answers for most of my questions via Google. Every mention I find of SSDI assumes that it's not taxed. Our family income is high enough that mine is. I also can't find anything that would apply to Cordelia's benefits, the ones she receives based on my disability. Those will vanish when she turns 18. I can't tell if my disability might affect our asset protection allowance. We have 100K equity in our house, possibly more, depending on the market. (We owe more on the house than we did when we bought it, but we still have more equity.)
I'm not sure how the reductions in our income due to Scott's job change will affect things (or if they'll be considered at all) or if it would matter if I lose my LTD benefits from the University of Michigan permanently.
I'm considering one of my UCon game scenarios done but for the printing. The other one is still far from done. Part of the problem is that I have an indefinite number of characters (2-6 plus whatever npcs I can manage) who are supposed to negotiate and brainstorm a diplomatically and legally binding solution to a global problem in the middle of WWII.
On one side, there's me assuming that the negotiations are going to leave out most of the planet in spite of affecting all of it. On the other side, there's years of research and scaffolding for the multitude of people who actually ought to be there and their cultures, agendas, and everything else. I can handwave to some extent the notion that only a couple of governments would be involved, but they're talking to an organization that actually is global in terms of where the members live and in terms of their ability to communicate with each other.
The only reason why the representatives from that organization should be from the US or Great Britain is if the organization is assuming that those governments won't take the representatives seriously if they look white and male and speak the right languages with the right accents. Which... Actually that makes some sense. Okay. Problem solved to some extent, but I'll need to make sure the background materials reflect that.
If I get players who have the knowledge/background to play folks from other places, I can let them modify their characters based on that. That is much better than me trying to write a paragraph or two to convey things that I don't know/understand well enough for players who equally don't to play the characters well.
ETA: And there will be no school tomorrow, so I can put off deciding about which FAFSA information session to attend.
Cordelia's school let out twenty minutes early which I think was meant to help keep the buses more or less on schedule for the middle school students and then the elementary school students as the same buses transport all three age groups, just at different times of day. I'm not sure if the early release gained the buses much time. Cordelia didn't reach her stop particularly early relative to the normal arrival time.
I'm not sure what the weather is going to look like tomorrow. I have an appointment with the LTD vocational counselor at 10:30, but if the roads are still bad, he may opt not to drive to Ann Arbor. My benefits run out on the 24th, and the only reason we're meeting is so that I'm compliant enough to keep them. I don't pay him; the LTD insurance management company does.
I would like to go to a FAFSA information night at one of the high schools tomorrow evening. I'm not thrilled by the prospect, but I doubt the one in December (at Cordelia's school) will have better weather, and the one in January will likely also be bad that way. The one in January is probably the best as far as bus access because it's the school closest to downtown. I wouldn't want to walk from downtown, but I could. There are lights and crosswalks and sidewalks.
I wanted Scott to go with me to one of these because he's the one who'll need to gather all of the necessary information. I just can't wait and attend a session next fall because, if it's not done by the end of July, it won't get done before December (or, more likely, February).
We're probably going to have to find a professional to advise us. I can't find answers for most of my questions via Google. Every mention I find of SSDI assumes that it's not taxed. Our family income is high enough that mine is. I also can't find anything that would apply to Cordelia's benefits, the ones she receives based on my disability. Those will vanish when she turns 18. I can't tell if my disability might affect our asset protection allowance. We have 100K equity in our house, possibly more, depending on the market. (We owe more on the house than we did when we bought it, but we still have more equity.)
I'm not sure how the reductions in our income due to Scott's job change will affect things (or if they'll be considered at all) or if it would matter if I lose my LTD benefits from the University of Michigan permanently.
I'm considering one of my UCon game scenarios done but for the printing. The other one is still far from done. Part of the problem is that I have an indefinite number of characters (2-6 plus whatever npcs I can manage) who are supposed to negotiate and brainstorm a diplomatically and legally binding solution to a global problem in the middle of WWII.
On one side, there's me assuming that the negotiations are going to leave out most of the planet in spite of affecting all of it. On the other side, there's years of research and scaffolding for the multitude of people who actually ought to be there and their cultures, agendas, and everything else. I can handwave to some extent the notion that only a couple of governments would be involved, but they're talking to an organization that actually is global in terms of where the members live and in terms of their ability to communicate with each other.
The only reason why the representatives from that organization should be from the US or Great Britain is if the organization is assuming that those governments won't take the representatives seriously if they look white and male and speak the right languages with the right accents. Which... Actually that makes some sense. Okay. Problem solved to some extent, but I'll need to make sure the background materials reflect that.
If I get players who have the knowledge/background to play folks from other places, I can let them modify their characters based on that. That is much better than me trying to write a paragraph or two to convey things that I don't know/understand well enough for players who equally don't to play the characters well.
ETA: And there will be no school tomorrow, so I can put off deciding about which FAFSA information session to attend.
Re: TL;DR
Date: 2019-11-14 12:26 am (UTC)I was slowly losing hand function over the course of 25 years. In 2016/17, I took tamoxifen for 15 months, and abruptly lost about 30% of the function in my hands. Since then, I've worked with a hand specialist OT. There's no way at all to restore the function I've already lost. There's also no way at all to exercise my hands to prevent further loss. I've lost about another 20% of my function in the last 2.5 years, mostly due to pain bad enough that I can't keep using my hands.
One of the things I'm trying to find out is what the likely progression is in terms of future loss of function if things go on as they have been. I know that I'm going to lose the function eventually if we do nothing at all. That's pretty clear.
I also want to know how much worse the pain will get with the ongoing loss of function. I can't take most painkillers, so pain levels are a big concern, and the pain has been getting worse over the last three years.
So I want to know the odds of the surgery stabilizing things versus making things worse on several different fronts. If I'm going to lose another 30% of my function in the next 5 years anyway, then gambling that much for possible pain relief (or just the pain not getting worse) might be worthwhile if the pain relief lasts at least that long. I'm not expecting that surgery would necessarily give me back any of what I've lost and assume that, even if it did, I'd lose something in return.
Nobody's willing to give me that information. Also, nobody's willing to talk to me about what to do for help when I'm at home alone for 8-12 hours and can't do necessary life maintenance stuff. I'm not there yet, but I expect that I will be, probably in less than a decade.
I'm not trying to get surgery ASAP. I just feel that I'm facing a chronic and worsening issue without being able to get anyone to talk to me about it. Are there local organizations that provide support services? How much does it cost to have someone come in and help me wash? How would I find a person like that? How do severe essential
tremors interact with limited hand function over the longer term?
The hand OT people weren't very helpful. They kept offering me solutions that made things worse because the intersection of the hand pain and the tremors wasn't one they knew how to address. They also offered me a lot of solutions for problems they thought I must be having that I wasn't and still am not. The suggestions for things that I asked about specifically would require that I move to different house with a larger kitchen and have someone to clean all of the gadgets after I used them.
Re: TL;DR
Date: 2019-11-14 05:05 pm (UTC)In my experience you never get straight, definitive answers from medical staff, especially when talking about prognoses. I suppose there are so many variables to consider and each individual's tolerance for pain and disability is different. I'm lucky in that I'm resilient and haven't experienced mental health issues (not since my 20s, anyway), because I know those make all the physical stuff a million times harder to cope with. I never regained function from any of my surgeries, except inasmuch as I could do things because they didn't hurt anymore. When all the knuckles in my righ hand had to be excised and replaced, I was never able to bend it afterwards, so I can't make a fist, but I couldn't anyway due to pain, so no gain, but no loss. For me, losing the ability to do most manual tasks has felt like a long, slow bereavement and I spent a long time grieving for what I could no longer do. I also continue to lose function, because age, osteoporosis and neuropathy caused by cervical spine arthritis are all conspiring to make me weaker, less mobile and more prone to dropping things. But I have found I can cope with a lot more when I'm not in pain. The last few years I have been on injections of adalimumab for my RA, and it's made such a huge difference. I no longer need painkillers or anti-inflammatories, which I must a swallowed a million of over the years. But I have to rely on my husband to do a lot of things for me, and I expect I will become more dependent as the years go by. Which is a problem, as he has dementia, so I too will need to source practical support for everyday tasks, as we have no children to lean on. I wish you well in tracking down the help you need - I don't know how the support system works in the US. In the UK care is means tested, so I would have to pay for any help as I'm still working, and probably will have to pay when I retire as well, as I will have a private pension. Being disabled is not only phyically and mentally challenging, it's also really hard on the wallet.