Vague Wisdom

Mon, 26 Oct 2020 20:38:29 GMT

This is me trying to produce some words on a page (or a blog) to get to producing something. I have voted. I have helped a few other people to vote. So I've done what I can right now. Except for four outings, I have stayed home. I will need to go out at the end of the month for testing to continue to get my SMA drug. There will be blood tests and other things but no eye testing.

Everything is like fighting through syrup. I hope everyone is faring well under the circumstances. Let's hope we retire the Uber Cheeto

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Thu, 19 Sep 2019 21:40:30 GMT

Hi there, long time no write. I'm trying to post more regularly again.

Still reading a whole bunch of zombie crap. I seem to be suffering from choice-paralysis. Can't seem to decide what to read or watch or listen to or do most anything. I listen to music by telling Alexa, play music. Then music I like gets played. I don't know where the info comes from on what I like and what I don't like, but she's remarkably good at picking stuff I like. So there is one choice I don't have to make.

I did binge-watch, Orange is the New Black. I had a difficult time getting through the first three seasons, but after that I really enjoyed it. Some very impressing acting on that show. It feels like the end was wrapped up a little too quickly. I get the feeling they were counting on another season, but didn't get it. There were too many storyline beginnings that just ended with a little resolution but not really.

I'm working on getting my study uncluttered. Our floor back there is deteriorating and we need to make some repairs. I'm also working on getting a wheelchair; a new lift, and I would really like someone to look at our electrical. We still have some pretty old connections that I would like to upgrade. I'm looking towards getting solar panels on the roof and hopefully some kind of power backup. Our electricity is fairly reliable, but does go out for short periods of time two or three times a year. Given how much I rely on electricity, I'd like some backup.

I've got a project working on for The Center for Accessible Technology. I'm going to be maintaining their website for people to review, suggest or publicize adaptive tech for people with disabilities. They used to have a fairly thriving community, but it petered out in the last few years. I'm trying to reorganize it and re-energize the place. I'm not sure I have the technical expertise to do what they seem to think I can do. Most of the meetings I've had with them about it has been the trying to reduce their impression of my abilities. Still, it's something to do. That's about it for now hopefully I will post again soon.

PS loracs and I attended a protest in San Francisco of several different groups: people with disabilities, size acceptance folk, LGBTQ etc. demonstrating solidarity with immigrants to this country. It is evil and how we treat those trying to escape the atrocities being perpetrated in South America. Just to separate children from their families and locking people up for no reason except that they wanted to be safe.

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Sun, 30 Jun 2019 20:32:58 GMT

I know you've all been wondering what the heck is going on with stonebender? Well, I'm going to try better at posting here (you've never read that from me before). I have been in one of my more intense funks. I think I'm getting over it. I am no longer taking Spinraza. I am however taking another drug that is an oral medication, called Risdiplam from Roche. It seems to be maintaining what strength I gained under the other drug and it is obviously easier to take than a drug that needed to be delivered with a lumbar puncture. I had to be part of a study in order to get this new medication which entails some not fun hospital visits, but overall I'm happy with the drug situation.

I have not read anything with any intellectual heft in a while now. It's mostly comfort reading which means apocalyptic fiction/old sci-fi/especially Heinlein juveniles. I did read a fun little book called Gregory's World. Which I enjoyed. Fellow crashes on planet that is some kind of Sargasso planet. He finds himself having to survive along with gobs of shipwrecked aliens from lots and lots of places. All stranded and all trying to have a life. It was fun to read and I even bought the sequel.

I re-watched the first four seasons of Fear the Walking Dead seasons. I like this series much more than I did when I first saw it. I have lost some enthusiasm after season 4. I lost a lot of rooting interest since then, but my opinion of the series has greatly improved.

My sister is going through some bad health stuff not helped by breaking her leg recently. I'm trying to help her without doing everything because I think it's important that people be as independent as possible. After surgery to repair her ankle, she is in a rehab facility to recover. In fact it's the same rehab center that my mother went to before she died. It feels oddly homey to me.

That's probably enough for now. More later.

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Thu, 04 Jan 2018 07:33:46 GMT

A rough beginning of the year for me. Nothing disastrous as usual but not exactly pleasant. Felt a bit ill for some of it and spent a few days recovering. I have my next dose of Spinraza this Friday. This is the first regular dose after the loading doses. It's been 4 months since my last shot and I find that I'm a little more nervous than I was. In preparation, I need to have a blood test and I have needed to get a blood draw for my yearly physical. I managed to get them done today. The only problem was I needed to fast for one of the tests and because of scheduling etc. I didn't really get coffee or food until about 5 o'clock today. However I did get one of my favorite dinners-breakfast for dinner. Had an omelette with some sausage and coffee.

Saw my therapist and reminisced about my mother. Feeling particularly disconnected from family, both blood and chosen. It will be okay. It's really no one's fault but my own. I hope everyone is surviving. I can't really hope for more given the current bonehead and chief.

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Thu, 04 Aug 2016 03:51:45 GMT

I'm back from the hospital!

( What? You want details? )

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Sat, 17 Jan 2015 02:52:45 GMT

I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.

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FOGcon 4

Thu, 18 Jul 2013 00:45:15 GMT

I've been involved in organizing FOGcon for years now. I did publications for a couple of years. I was Vice Chair of FOGcon 3 and this year I am chairing the convention. Our theme is Secrets and one of our biggest secrets so far has been who were going to be our honored guests. I know many of you have been sitting on the edge of your seat waiting for the news. Well, here is. As Chair of FOGcon 4 I'm thrilled beyond measure to let you know that our guests this year will be Seanan McGuire and Tim Powers! Our Ghost of Honor will be James Tiptree Jr.

I'm really excited about this year's guests and our theme. Reading the news these days certainly makes our theme timely. If you'd like to know more about our guests or FOGcon, please check our website FOGcon.

I plan to write more about my adventures in chairing this convention. So check in here as well. There may still be a few more surprises coming up, so pay attention. We're going to have fun! Try to come out and see me this March.

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Mon, 04 May 2009 22:37:14 GMT

The day beforer yesterday, I didn't feel very good, so in an attempt at getting some attention I posted an "ask me any question about me that you want to, but never have". As soon as I posted it I felt a little self-conscious and quickly deleted it. In the interim between posting and deleting ljgeoff asked, what is my day like? I've been feeling a little guilty that I didn't respond (why yes I was raised Catholic. Why do you ask? :-)) Anyway, I spent most of Saturday by myself. There was a party I was supposed to go to but the weather prevented it. loracs was visiting dbubley at the rehab center. So I was feeling pretty lonely. I'm slightly better today but I seem to be at a low ebb these days.

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