Birthday greetings and felicitations

Jul. 26th, 2017 08:47 am
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
 to [personal profile] el_staplador !  A day of beauty and joy!

Profiles in Courage

Jul. 26th, 2017 07:22 am
supergee: (disgust)
[personal profile] supergee
In 1999 a professional football player named Cecil Collins was caught climbing through a window with intent to rape and was sentenced to prison. The unusual part was that he was on the Disabled List with a broken leg. That was my go-to example of admirable personal qualities turned to bad ends until yesterday, when John McCain bravely overcame grievous health problems to vote to let millions of people die.
jesse_the_k: Hands open print book with right side hollowed out to hole iPod (Alt format reader)
[personal profile] jesse_the_k posting in [community profile] access_fandom
Elsa Sjunneson-Henry is the Managing Editor of Fireside Fiction, a literary magazine which publishes a variety of things, lots of which are SF.

Her essay on the task, and the metaphor, of "blind reading," does a great job explaining why the phrase "blind reading" is unhelpful

http://firesidefiction.com/blind-reading

Here's a taste: click to read )

Universal nasty

Jul. 25th, 2017 08:03 am
supergee: (bucky)
[personal profile] supergee
How South Park helped raise a generation of trolls

The new astrology

Jul. 25th, 2017 07:07 am
supergee: (Foster)
[personal profile] supergee
Of course it’s science! Look at all those equations!

Thanx to [personal profile] andrewducker

The M word

Jul. 25th, 2017 05:53 am
supergee: (thinking)
[personal profile] supergee
Elitism has come to mean “rule by rich people who went to Ivy League schools.” Now, meritocracy is coming to mean “rule by rich people who went to Ivy League schools.” Wouldn’t it be nice to have a word for “having things done by people who are good at them”?

Thanx to Slate Star Codex
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.

Drivin'

Jul. 24th, 2017 02:41 pm
onyxlynx: Blue bkgrd, large red 7th, words "decade of fabulous." (As in "I'm in my 7th decade of fabulousn)
[personal profile] onyxlynx
 This morning's ghastly realization:  I am old enough to sort of remember pre-Interstate car travel.  (I bored an Irish-Canadian of approximately my own age talking about the journey between Buffalo and Niagara Falls [he escaped just before I started explaining about the ancient off-ramp just off the bridge to Grand Island northbound, which used to describe a tight circle, which was still visible though overgrown thirty years ago.  Having checked Apple Maps, there seem to be extra roads there now.  Ah, well.  The Thruway was built/extended in the late '50s.  Wow.].  It was a tedious trip.)

I get to chuckle at the irony that during rush hours, the highway is slower than city streets with the lights.  (Yes, destruction of neighborhoods, Robert Moses, Justin Herman, but divided highways were not really intended to be in cities; they were intended to bypass cities.)

Hippo, Birdie, Two Ewes

Jul. 24th, 2017 11:02 am
onyxlynx: Festive pennants in blue & purple with word "Birthday" centered. (Birthday)
[personal profile] onyxlynx
 to [personal profile] beckyzoole !  May today be as un-Mondayish as possible!

Kid Killers

Jul. 24th, 2017 05:58 am
supergee: (noose)
[personal profile] supergee
Nine toys my generation* survived.
*Well, most of us, anyway.

Thanx to File 770

I have a tool for that, too

Jul. 23rd, 2017 05:32 am
supergee: (kangaroo)
[personal profile] supergee
Massachusetts wants to put you in jail and steal your car for having a secret compartment you might use for ritually unclean substances.

Thanx to Avedon's Sideshow.

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Kerry

May 2013

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