Vale Usekh

Jul. 28th, 2017 10:04 pm
lederhosen: (Default)
[personal profile] lederhosen
Our friend Usekh died in his sleep last night, after a long illness. He was a lovely guy, and a smart dresser. He will be missed.

Special thank-you to medical researchers everywhere, who managed to buy him four more years than anybody was expecting.

And for what it's worth, I'm grateful that it happened in a country where this didn't mean medical bankruptcy. It's been a weird day, mourning Usekh while watching today's political fuckery in the USA. I'm glad the latest abomination of a bill got killed, but sorry for y'all having to deal with this awful uncertainty.

reading wednesday

Jul. 26th, 2017 07:59 pm
boxofdelights: (Default)
[personal profile] boxofdelights
• What are you reading?

Chimera, by John Barth. Last read in college, when I was studying computer science, and everything Barth said about letters and stories seemed to be a direct reflection of something Turing discovered about numbers and computing machines. "The key to the treasure is the treasure."

• What did you recently finish reading?

Station Eleven, by Emily St. John Mandel. I had been putting this off, because my non-SF-reading friends were saying it was really good but my SF-reading friends were finding it disappointing, which usually means I'll find it disappointing. Turns out it's really good!

• What do you think you’ll read next?

Out Stealing Horses, by Per Petterson, for Tawanda book group.

W00t!

Jul. 26th, 2017 05:07 pm
stonebender: (Default)
[personal profile] stonebender
Guess what? They did it! This time my second dose of Spinraza is swirling around in my spinal column. It was still pretty difficult this time although they did make some adjustments. I got a CT scan in addition to fluoroscope. I guess the CT gave them a little more information. Apparently I have a lot of bone in the way of some natural access points. The one place they’ve managed to be successful is a fairly small hole and they’ve got to approach it at just the right angle. They worked on me for about an hour. Having gone through this the day before, Tuesday’s hour was about my limit.

Another adjustment they made, was not putting me on the table until the doctors were ready to proceed. I still had to wait while they checked my spine out with the fluoroscope, but at least all the time I was on the table they were working towards the injection. I’m going to have a long conversation with the doctors in the near future. There must be some way they can make this process easier. I’m not so worried about getting my “loading” doses but I am concerned about the continuing process of getting these shots. I have a third dose in two weeks and then a fourth dose a month after that. Then I need to get a dose every four months for the rest of my life. I guess I will deal if I have to but it’s a discouraging prospect.

I’m going to try to respond to everyone individually, but if I don’t get to you, please know that all of your support with the support of my family makes it possible for me to go through this. I think I’ve noticed some improvements in my physical status, but I hesitate to talk about it much this early in the process. I will keep people informed.
stonebender: (Default)
[personal profile] stonebender
Today was supposed to be the day for my second dose of Spinraza. I showed up half an hour early to my appointment at the Stanford Neurological Clinic. Checked in and was sent to radiology. They told me that the second time should be easier. They had done the procedure successfully once. Documented where they had been successful and things were supposed to go more smoothly this time. Well I'm home and it's 9 o'clock-ish and I did not get the Spinraza today. The nurse, Connie tells me we can try again tomorrow, but if we are unsuccessful, I don't think I will be getting anymore medication.

Like last time, I was transferred from my wheelchair to a gurney. I had to wait a couple of hours because there was another person getting Spinraza ahead of me. I guess they're getting a lot more interest from people with SMA.

Around 11 o'clock they wheeled me into the room and transferred me to the cold hard table they use. They positioning me on my left side again and then I waited 10 or 15 minutes for the doctor to show up. Normally this isn’t a big issue I’m used to being patient and waiting for doctors, but laying on a flat surface is painful for me. My diagnosis causes contractures in my joints especially my hips and knees. So I don’t really do flat surfaces very well and making the surface hard doesn’t improve the situation.

Eventually the doctor showed and they finished positioning me and started taking pictures to decide the best site for the lumbar puncture. After 30 minutes or so they numbed me up and started poking. Now I want to be clear the staff at Stanford are really great to me. They were very thorough and professional this time. I just apparently have a uniquely fucked up spinal column. Even though they saw what looked like a very promising site for the puncture they kept hitting bone. Around an hour and 30 minutes I was starting to get in real pain. I had been in pain since they put me on the hard table and I was able to manage it but at this point I was starting to feel like couldn’t really take much more. I was even neglecting to report some pain from the puncture because it just didn’t really hurt as much as the rest of my body.

My shoulders ached, my hips hurt and the ribs on my left side were killing me. The doctors kept asking me to hang in there and Connie asked to give them five more minutes. They pulled out the needle, changed doctors and took another try at a whole new area of my spine. (After having made two attempts higher up on my back.) After another 30 minutes the doctor said she was very. very close and to hang in there. I tried for another 10 or 15 minutes and reluctantly pled uncle.

I was in agony. I was sweating. I was exhausted. Frustrated with myself and the universe for screwing around again. They rolled me on my back and eventually got me into my wheelchair. My worker, who came with me, had an appointment for her doctor at 2:30 in the afternoon. We hadn’t thought we would be at Stanford this long, but once I was done we rushed to the car and tried to get to Highland as soon as possible. We did manage to get her to the hospital about five minutes late and she texted us later to tell us the doctor saw her. So at least I didn’t screw her day up.

Connie said she would try to work something out. You see this drug has to be administered on a strict schedule once I had my first dose two weeks ago I have to have the next two doses in intervals of two weeks. However it turns out that I have one day leeway. I must get my next dose tomorrow or I think I need to start over again. I’m not at all sure I would get the approvals. I am the first person with Medi-Cal and Medicare who has been approved for the treatment. I was supposed to be the test subject. Connie said she'd call me later and she did. I have an appointment to try again tomorrow.

The problem is tomorrow I was supposed to have my caseworker do their annual review for my IHSS (which funds my personal care workers). I have never had to reschedule before but I had to reschedule in order to go to my original appointment. We rescheduled for the following day which of course now I can’t make. So I need to cancel again and hope they won’t be too upset.

I feel like I failed. I know intellectually I didn’t, but I think of myself as being pretty stubborn and I’m proud of that. Now, I gave up and I can’t help thinking I should’ve tried to hang in there a little longer. I really hope these treatments get easier or I don’t know how much of it I can take. Wish me luck tomorrow. And hope my caseworker doesn’t decide to screw me over.

First flight of the Janusaurus

Jul. 17th, 2017 01:00 pm
submarine_bells: K-13 glider performing aerobatics (k-13)
[personal profile] submarine_bells
As regular readers may have observed, my gliding club owns a number of gliders, most of which are vintage wooden birds. These aircraft are great and I love them to bits, but they're not terribly shiny. They're old-fashioned and relatively low performance, and so it was decided that we needed to aquire a high-performance two-seater to use for advanced training and cross-country flying. A promising contender was located - a Schempp-Hirth Janus B that a club in Victoria was selling - and the club exec commenced negotiations... at which point, a miracle occured!

Well, not a miracle exactly. But a wonderful event. There's a fairly high-profile South Australian tech entrepreneur who's been in the news a fair bit recently: Simon Hackett, the founder of big South Australian ISP Internode, who has also been on the board of the NBN, and has been most recently in the news for his company Redflow, the local pioneering makers of zinc-bromine flow batteries. Anyway, my gliding club has a long history with Simon - we taught him to fly, and he's been a generous supporter of the club over the years. But he's really outdone himself this time. We'd worked all the numbers and figured out that we could just afford to purchase this aircraft if we maybe removed another one from service, or rearranged the insurance setup we had on the other aircraft, or some such thing... anyway, it was tight but just do-able, with a bit of luck. And then as the purchase was about to go ahead, Simon stepped in and paid for the Janus. All of it. As a donation to the club.

Like, wow.

This all happened very fast. Last week a couple of club members went to Victoria to look the Janus over - and they returned home with it in a trailer. It arrived at the airfield on Saturday, to our very great delight. And so may I introduce to you our very own Janus B high-performance advanced training glider!

Here we are after removing the Janus from her trailer, in the process of rigging it prior to flight. As a fibreglass two-seater, she's the heaviest aircraft we own. Given that rigging a glider involves several people holding the wings up in position while connections are made in the fuselage, one wag started referring to her as "the Janusaurus", a name which seemed to stick.

rigging the Janusaurus



And here's the Janus in all her glory. Quite something, isn't she?

moar Janus
Janus beauty shot

I was thrilled to get a flight in the Janus. Here I am just before launch, with instructor Derek in the back seat:
ready to launch
It's definitely going to take a bit of training and practice before I'll be able to fly the Janus solo. She's a very different bird to the ASK-13s and Ka-8s that I'm used to. My initial impression was that she felt a bit like a very shiny polished barge to fly - heavy, smooth and stable. The stick was heavier than I expected, and the rudders really require assertive stamping-on to be useful - no delicate little rudder nudges for this plane! It has a completely different feel to the vintage gliders I've trained on, and is more complex as well, being a flapped glider that also has water ballast tanks (good for racing). There's going to be quite a learning curve here, I can really see that.


Here's a few more pics of the Janus taking off and landing. Isn't she pretty?

the Janusaurus takes flight
VU in flight
Janus on final

The Janus is going to be such a wonderful asset for my club. Not only is she beautiful to look at (which does tend to attract new folk more than our vintage fleet) but she's a modern-style high-performance aircraft that will make it so much easier to train pilots for the transition between our old trainers and fast fibreglass single-seat aircraft, which thus far has been difficult to do. Also she'll be perfect for the regular club soaring camps in the Flinders Ranges and Blue Mountains, as she's got the performance to be able to easily handle those more challenging flying environments, and as a two-seater it'll be possible for less-experienced pilots to join in the fun with an instructor teaching them how to fly in unforgiving mountain terrain. But best of all, she's perfect as a high-performance cross-country trainer. I'm hoping to learn how to soar cross-country this coming summer, and it'll be so much easier and better to do so in an aircraft like the Janus. I can't wait!

Toronto Comics: Yonge at Heart

Jul. 15th, 2017 02:45 pm
bcholmes: (comics code authority)
[personal profile] bcholmes

This week, the Shuster Award nominations were announced, and for the third year in a row, the Toronto Comics anthology has been nominated for the Gene Day Award for self-published comics. We’ve lost out the last two years, and I don’t really expect this year to go any differently but, as they say, it’s an honour to be nominated.

Because of eligibility date requirements, the nomination was for Volume 3, which came out in 2016. But it’s 2017 now, and there’s a fourth volume. This year, the editors dispensed with the “Volume X” subtitle, and gave the book its own swanky subtitle: Yonge at Heart! This year’s book is a bit smaller (in a “number of pages” sense) than previous years, but what it lacks in pages it makes up for with vibrant colour! And, boy howdy, does that colour make for some gorgeous pages.

Read the rest of this entry »

Mirrored from Under the Beret.

Profile

saluqi: Jadir running (Default)
saluqi

February 2011

S M T W T F S
  12345
6789101112
13141516 171819
20212223242526
2728     

Style Credit

Expand Cut Tags

No cut tags