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[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.

today and tomorrow

Jul. 24th, 2017 08:59 pm
alatefeline: Painting of a cat asleep on a book. (Default)
[personal profile] alatefeline
Today I am grateful for:

- rereading the Toby Daye books

- lots of new nonfiction books

- coffee, meds, food I know is okay, sunlight, naps, all the things that help me feel functional

- shiny objects like metal washers that are just there waiting for someone to pick them up and polish them and make treasures

- a partner who loves me and pets me when I just want to lie there and be a flat cat

Slight case of brainweasels and fwump: Read more... )

Family D&D

Jul. 24th, 2017 11:37 am
clawfoot: (geeky)
[personal profile] clawfoot
So! Maize and I went to my sisters' house over the weekend. We arrived on Friday night, around 9pm. We sat and socialized until about 11pm. Then we all made characters.

The process is always slow for beginners, but I knew that dumping all the rules on them at once would just make their heads spin and their eyes glaze over, so I just gave them the bare minimum they needed to make key decisions and we were off.

My sister-in-law (SiL), created an agender Forest Gnome druid named Fungi. They're a nervous talker, form strong friendships, and are obsessed with gardening. They have the background Outlander, and are struggling with the loss of their forest home (destroyed by a wild fire). They have a bad memory and can have a bad temper.

My sister created a male high elf ranger named Dark Cloud. He is an ex-soldier who is always calm, judges people on their actions rather than their words, and loves a good insult, even if it's directed at him. He has a weakness for drink and a "tell" when he lies. He is all about honourable service, although his chaotic good alignment makes it difficult to follow orders that don't adhere to his personal code (see: ex-soldier).

Maize made a male human cleric of Pelor named Chet who has lived in the temple most of his life (background: Acolyte). He values kindness and charity, trusts people way too easily, gets drunk on very little alcohol, and loves to sing (badly).

I made a male half-orc fighter named Sledge who is trying to redeem himself. He is an ex-smuggler who made a mistake and got someone he loved killed. He doubts his judgement a lot and so prefers to follow rather than lead, and he's rash and doesn't follow through with plans too well (dump stat: Wisdom).

Then we went to bed (around 2am).

The next day, after taking the dogs out and having a delicious breakfast, we played! We started around 11am, I think. I had an adventure all ready to go, and we delved in without too much ado.

We played for about twelve hours, with a couple breaks. We broke for an hour around 3pm because my sister had to run out to pick up an order they'd put in at a local butcher, and we took the opportunity to run the dogs again. And we broke again around 6:30pm for a quick dinner. But we were back at it soon after.

Memorable moments:

  • Chet getting drunk about 0.5 seconds into the actual game. I guess that's what I get for starting the game in a tavern when one of the characters is a serious lightweight.


  • Negotiating with a kobold queen who has offered one of her subjects (Meebo) as a guide:
    Fungi: "Is there any further help you can offer?"
    Kobold Queen: "I have offered you Meebo."
    Dark Cloud: "Can you offer anything useful?"


  • Party: walks into a room with a white dragon wyrmling in it. "Let's talk!"
    Wyrmling: *BREATHES COLD*
    Half of Party: *reduced to -4 hp*
    Other Half: *heals unconscious party members*
    Entire Party: *FLEES*


  • Once everyone got healed, Chet successfully negotiated safe passage through the room with the dragon wyrmling mostly through interpretive dance. I am not kidding. I cannot even explain it. It was hilarious and awesome and EPIC.


  • Upon hearing that a bugbear foe was named "Balsag," immediately and permanently referring to him as "Ballsac" instead.


Fun times!

I was right when I suspected that my sister really wasn't all that interested in the game, and that she was going along with it mostly to please her wife, but she admitted on Sunday morning that she did find it a lot of fun and would be interested in playing again. I knew she wasn't into it at first (mostly because I know her pretty well, but also because a GM can always just TELL when a player isn't fully engaged), but I could also tell that she was drawn in pretty quickly. It wasn't long before she turned into an active participant, cracking jokes and coming up with ideas along with everyone else. I am very pleased about that. I'm not claiming credit -- I'm just so pleased she had fun and it wasn't a 12-hour slog for her.

So I would call the weekend a success!

Interesting Links for 24-07-2017

Jul. 24th, 2017 12:00 pm
andrewducker: (Default)
[personal profile] andrewducker

The state of Augmented Reality

Jul. 23rd, 2017 09:27 pm
andrewducker: (Default)
[personal profile] andrewducker
Five years ago I had a disagreement with a friend over whether this article was being overly pessimistic about augmented reality and whether we'd have "hard" AR soon.

Five years later, and this is the state of the art:


Which is, I totally admit, a very neat tech demo. But it's not "there" yet. The FOV is too small, and you can see the real world through it. Although, to be fair, most of the time the real world isn't _that_ distracting, you're definitely not going to be able to "see Victorian gas lamps in place of normal lights" or "have a real Coke can that you want to turn into an AR Pepsi can by drawing a Pepsi logo over the Coke logo".

Ah well, I'll make a note to come back in five years time and see where we are then!

(no subject)

Jul. 22nd, 2017 10:02 pm
alatefeline: Painting of a cat asleep on a book. (Default)
[personal profile] alatefeline
A superlatively skilled and gifted Bard of my acquaintance is seeking themes for writing prompts. Some selected themes will be the basis of upcoming Poetry Fishbowls, a regularly scheduled audience-participation event, which results in the writing of excellent poetry. Much of the artist's previous work has been in serial narratives featuring vivid characters of variously marginalized identities.

http://ysabetwordsmith.dreamwidth.org/11059588.html

Please go suggest themes! What topic do you really wish someone would tackle that never comes up? What genre, mood, symbol-set, or aesthetic pleases you?

Dept. of Success

Jul. 22nd, 2017 04:34 pm
kaffyr: (Hurrah!)
[personal profile] kaffyr
This Is What Success Looks Like ...

Under here .... )

Interesting Links for 22-07-2017

Jul. 22nd, 2017 12:00 pm

Yatta/To Do for 19 - 22 July

Jul. 21st, 2017 10:24 pm
ladythmpr: (yatta)
[personal profile] ladythmpr
Yatta!

* Woke up too early!
* Performed PT exercises!
* Valient attempts on getting children back on regular routine!
* Put dinner into the crock!
* Went to movie theater to see Hotel Transylvania 2!
* Did the big Costco shopping!
* Hauled the groceries upstairs, with child assistance!
* Put away the groceries!
* Put milk on for yogurt!
* Went to our usual Wednesday afternoon playdate!
* Cross stitched on the week two chart for Steotchalong! (Still 3 days behind)
* Turned the children over to the sitter!
* Had delivered Chinese food, Defiance and Assassin's Creed:Revelations for date night in!
* Decanted yogurt milk to ferment!
* Did not unfuck my Thursday morning!
* Performed PT exercises!
* Girls managed to be ready for the day barely on time!
* Mom came to visit!
* Unpacked the vacation luggage!
* Washed and dried/hung to dry two loads of vacation laundry!
* Cross stitched the remainder of the week 2 chart for Steotchalong! (finished 4 days behind...)
* Washed and dried a load of towels!
* Took kids out to the airplane playground!
* Washed a load of towels and backpacks!
* Cross stitched some of week 3 chart for Steotchalong!
* Made brats and mashed potatoes and salad for dinner!
* Went out to a craft store with Mom and without kids!
* Got home to help with kids' bedtime!
* Read Junie B to K while she was waiting for teeth brushing!
* Read the entirety of the long version of the Dr Suess Sleep Book! (and K was still awake)
* Watched the last of the Giants game! (they lost)
* Did not unfuck my Friday morning!
* Did PT exercises!
* Made myself a big breakfast!
* K unccoperative in getting ready and misses morning deadline!
* Both girls squirrlly, so I got them out to the airplane park before 10am!
* Played at airplane park until 1pm!
* Cross stitched some of week 3 chart for Steotchalong!
* Dried a load of towels and hung backpacks to dry!
* Washed a load of kids costumes and other delicates!
* Set the brain to work on how to repurpose the rolling file cart I found in the garage into an art cart!
* Made calls to determine kids' dentist appointment (which I had to move) and when I need to submit their medical physical forms for school!
* Worked clearing the office for about 45 minutes, in fits and starts!
* Hung-to-dry the kids' delicates!
* Washed the rest of the backpacks!
* Had leftovers for dinner!
* Puzzle Pirates!
* Watched the Giants game from the 6th inning! (they came from behind to tie the game in the 9th inning; but lost in the 11th - the game ended after midnight!)
* Put away a bag of random stuff taken out of backpacks/luggage!
* Decided which garage sales to stop at on Saturday! (Looking for kids' clothes)
* Did not unfuck my Saturday morning!
* Got awakened by children!!!
* Got me ready for the day!
* Put chicken soup into the crock!
* Shopped at some garage sales, where I got 13 pieces of kid clothing, an M&D fairy coloring pad, and a couple of Dora book for $20.50!
* Attended the Y playdate for incoming kindergartners!
* Went to the Park & Rec Play Day at the park near the girls' new school, where the girls tried bicycling and skateboarding and wall climbing and a big fun slide!
* Shopped for some things on sale at Michael's, plus 20% off everything coupon!
* Hosted B5!
* Baked Chocolate chip cookies!
* Cross stitched some of week 3 chart for Steotchalong!
* Showered the children, and koolaid-dyed their hair (sort of, they didn't want to wait long enough)!
* Puzzle Pirates!
* Watched the DVRed Giants game; they won!
* Did not unfuck my Sunday morning!



To Do

= Unpack
= Wash all clothes from vacation (animal issues)
= Wash backpacks
= Put away luggage

sandy river swimming

Jul. 21st, 2017 08:33 pm
alatefeline: Painting of a cat asleep on a book. (Default)
[personal profile] alatefeline
This afternoon I went to the Sandy River.

Read more... )

They flutter by

Jul. 21st, 2017 10:42 pm
wcg: (Default)
[personal profile] wcg
Some recent daytime photographs of local specimens.



I'm told it's a Red Spotted Purple, and Google seems to agree.

Two more back here. )

this red tape is made of blood

Jul. 21st, 2017 01:24 pm
alatefeline: Painting of a cat asleep on a book. (Default)
[personal profile] alatefeline
Paperwork headdesking: a simplified transcript.

Warnings for major complications of the 'bureaucracy is literally trying to kill you' sort, systemic transmisia & ableism & classism, capitalism devouring its young.

Read more... )

FUCK FUCK FUCK. *sound effects of smashing things, ripping with vicious claws*

I'm going out. *doorslam*

ETA: I did indeed go out and that was good. I went swimming in a river! And other things have come along that need dealt with, sigh. Thank you for all the support, both those of you who have commented and anyone reading and well-wishing later. I may close comments here shortly because I need to move on mentally; we'll see. <3

Interesting Links for 21-07-2017

Jul. 21st, 2017 12:00 pm
andrewducker: (Default)
[personal profile] andrewducker

For your viewing pleasure

Jul. 21st, 2017 12:15 am
wcg: (Default)
[personal profile] wcg
I see it's been three weeks since I posted anything here. July has been a slow month for astronomy, due to persistent clouds over the Canary Islands and Chile, but I do have a few gems to share with y'all.

Behind the velvet curtain... )

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