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.
[personal profile] polydad
So I just got back from SHIFT, and still don't know what it's an acronym for. Then again, I'd been to SOAK earlier, and haven't learned that one yet either. I don't think the names actually matter to anyone but the organizers; to the attendees, it's a specific type of party, and what matters is there be lots of very loud music, drugs, presumably sex (no one in my perception expressed any interest in sixty-year-old men, but there did seem to be a fair amount of smooching going on).

I don't know yet where the energy sustaining this community is coming from. I've witnessed the boil, so there has to be a fire under the pot. Or possibly a solar reflector or resistance element; I haven't gotten that level of detail yet.

There's a lot of need here for language I haven't witnessed yet. I don't like having to invent jargon, but it may be necessary. Festivals are a culture?/subculture?/counterculture?/something-else?, and there are similar such in politics and philanthropic works. Together this makes a great test case for metaculture. CSB (Community Supported Brewing), a group I've been involved with since its inception four years ago, now has several other people in it who are getting serious about influencing their own culture. And this past weekend I made firm contact with one of them and two people from either the festival or the main act at it (there seems to be a fuzzy boundary there).

And now I'm back, a bit sunburned, and need to pick up all the *other* pieces I'd left behind and make sure all the plates are still spinning. The Wolf-PAC/Progressive axis needs tending, and HCAO may become part of that axis also. And I need to find out what Colby's doing and how it fits in; I don't know what it is yet, but I *do* know Colby, and so I'm sure there's *some* kind of fit hiding in there somewheres.

And there's still XCRH, Civic Consul, and GEARCon. I'm not cranking hard enough on any of these, and I need to both do that and find more things to be cranking. And not die in the process; I've just spent the morning waiting on the health bureaucracy, and at least got a detailed outline of what I have to do over the next two weeks to get my healthcare *activated*. (I am now *technically* insured, except the insurance doesn't *work* unless I can get it "assigned". If I try to get health-care now, I spend the rest of my life in court fighting monstrous corporate legal departments. With any luck, I can stay healthy for two weeks and get it all fixed. For 11 months, then I have to do it again.)

In 2.5 hours I get a visit from "TomCat", who will be returning my cooler and taking me to another CSB meeting. He represents an even lower (and thus more fundamental) level of the pyramid; he builds things we need.

So I might as well fold laundry. I can talk with more people later, see if I can find the right words to get this story started.

The Beast and the Bucket

Jul. 25th, 2017 02:17 pm
cz_unit: (Default)
[personal profile] cz_unit
For years I have been thinking about getting another Porsche to add to the stable. At one time I had three of them, my 87 944S I have owned for over 25 years, a 73 914 and a 68 911L. All good cars, I bought the 914 to replace the 944S when I broke the head on it. But over the years I fixed the red car and let the 914 and 911 go to different homes.

Still it's been 25 years, so this year I started looking at other cars. Decided on getting a 928S, they are big, heavy, fast cars, the big brothers of the 944's. And since I know the 944S engine (it's very complex) I know that a 928S is just that times two. So off I looked at a number of clunks, clunkers, before finally bidding on (and winning) this one in PA.

The beast

Best part is I bought it with bitcoins I had from all the work I do on stuff. Last year I was able to buy an ounce of gold with 2 bitcoins, now I can buy a Porsche....

Getting it home was fun. One of the requirements in my life is I have to drive the darn thing back, I am not towing wrecks. So my dad and I drove 4 hours out to Verona PA to pick up the car and get tags. Verona is near Pittsburgh, nice enough place with lots of poor white people. The car barely ran, and the driver's side window was broken along with the heat being on. So I had to drive it home nice and easy in 95+ degree temps with only the passenger window for air. It was, shall we say a long drive. But the motor got better as we drove, and I think I know what the root problem is (it's a simple fix, ignition computers go bad).Got it home before nightfall, and promptly went to bed.

Interesting side note: When we went to get the title notarized we went to one of those strip malls with a PA license and title center in it. Nice lady working it, with a guy as the notary. She totalled up the bill for the services ($100) and asked if I would pay cash or credit. Credit I said and handed over my Amex Gold card.

They both.... looked at it. They apparently had never seen one, and they thought it was unusual. I though at first they were joking, but no they got one a few months back but normally don't get Amex. Then it hit me: Amex requires you to pay in full every month. And in this area everyone lives on credit cards so no one would have Amex. Note to self: This is the White Working Class people that put Trump in office. Also note I didn't see one Trump sign there or back, and the two barns that had big Trump things on the side had been painted over (I drove out there early this year). Guess they are starting to see what they got....

Anyway spent the weekend working on the car, got the window working, sunroof working, heat working, mirrors, all sorts of stuff. Still need to work on the AC system and a few other things but the car is surprisingly sound. And fast, when the computers are working properly the thing is a BEAST. Thus it's new name, the beast. 5.0 liter 300hp 32v V8 engine and a supporting system designed to cruise at 130-150mph all day long....

Now I'm off to vegas for BlackHat, I'll do some drunken posting while there I am sure but I do also have a lot of meetings and things to take care of. So it's going to be a busy trip. Eventually I'll get some more time to finish this thing up and get it registered in MD, got 2 months to make that happen...

C



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.

(no subject)

Jul. 14th, 2017 05:12 pm
echan: Kaworu Nagisa from Evangelion (Default)
[personal profile] echan
I didn't actually will myself sick to get out of a work 'team bonding' event. But I can't deny the super convenient timing.

I finished up a big work project I've been working on for months. I was somewhat concerned I wouldn't be able to find something else big and lengthy to work on next... and then I stumbled on a trash fire made up of a few different individual fires that will take a lot of effort to put out. Which is great! But also a bit demoralizing, in the sense of "holy shit is everything terrible, am I going to be cleaning up decade-old bad code forever?".

I really need to apply for other jobs. For the experience of applying, remember / figure out how the hell to do interviews, hopefully get an offer I can use to blackmail my current company to give me a better raise. (I was basically told, flat out, that the only way to get a more-than-meh raise was if they had to 'fight' to keep me. So.) But the whole concept is terrifying. I get stuck on details like, what route would I take to drive there? I haven't even applied yet, and I'm already worried about the commute. I worry about everything, the whole chain of events, up front. Which makes me good with money, I guess, but in most other ways it makes things too impossible to begin, with all the risks and potential for failure.

I have fallen off of Twitter. I've conceded that I'll likely never be sufficiently blasé with my thoughts to casually tweet them out with any regularity. I recently got an instagram acct, for reasons I'm disinclined to examine closely. So far I've kept at it longer than I feared I would, so that's nice. I'm sticking to a deliberately slow pace, for now.

Busy day!

Jul. 13th, 2017 12:20 am
azurelunatic: A glittery black pin badge with a blue holographic star in the middle. (Default)
[personal profile] azurelunatic
Morning: feeding cat, finishing car registration.
Lunch: driving to Kirkland.
Afternoon: orientation for temp stuff.
Dinner: driving back, locating closed toe shoes and black pants.
Evening: catching up with Purple, sharing leftovers and various video content with partner.
Night: curled up happily.

Progress.

Jul. 12th, 2017 08:42 pm
[personal profile] polydad
Was outside for 20 minutes today, now have brilliant scarlet forearms and calves. Was wearing a hat, fortunately, so face is OK. Back of neck probably also colorful, but I can't see that.

(Wouldn't stalked eyeballs be *fun*?)

Got paperwork done to get insurance reinstated; should have coverage again by next week sometime. Hopefully I don't die first, but my record at that is pretty good so far. Searched storage area for shade canopies for next week's festival; didn't find 'em, but did find six folding chairs we can bring along. Arranged ride *to* ride on Wednesday. Need to fall over now while body repairs sunburn damage.
Page generated Jul. 27th, 2017 12:42 am
Powered by Dreamwidth Studios