emeraldarrows: The X-Files - Mulder kissing Scully on the forehead with text "Mulder/Scully" (2)
[personal profile] emeraldarrows
Next on my reading list was Timekeeper by Tara Sim, which caught my eye with it's offbeat plot. And it turned out to be an absolute delight.



Summary on the back: In an alternate Victorian world controlled by clock towers, a damaged clock can fracture time - and a destroyed one can stop it completely. It's a truth that seventeen-year-old clock mechanic Danny Hart knows all too well; his father has been trapped in a Stopped town east of London for three years. Though Danny is a prodigy who can repair not only clockwork, but the very fabric of time, his fixation with staging a rescue is quickly becoming a concern to his superiors. And so they assign him to Enfield, a town where the tower seems to be forever plagued with problems. Danny's new apprentice both annoys and intrigues him, and though the boy is eager to work, he maintains a secretive distance. Danny soon discovers why: he is the tower's clock spirit, a mythical being that oversees Enfield's time. Though the boys are drawn together by their loneliness, Danny knows falling in love with a clock spirit is forbidden, and means risking everything he's fought to achieve. But when a series of bombings at nearby towers threaten to Stop more cities, Danny must race to prevent Enfield from becoming the next target or he'll not only lose his father, but the boy he loves, forever.

My thoughts: I adored this book. From it's fabulous steampunk twist on history, to it's completely creative world-building, everything was complete perfection. The writing style was gorgeous, and I loved the entire creepy concept of time stopping an entire town, trapping the people inside. The concept of clock spirits was highly unique and fascinating - I wanted to know so much more about them! - and the historical details felt perfectly accurate, despite the interwoven fantasy elements. I enjoyed most of the background characters, and there were so many lovely scenes and moments, as well as an enjoyable ending.

Danny was a likable, thankfully non-annoying protagonist - I really enjoyed the concept of the mechanics in general, and it was such a delight to have a central character who wasn't the over-used savior type, but rather just an ordinary boy doing the best he can, and struggling to come to terms with the loss of his father and his mother's grief over it. Colton was instantly lovable, with his poignant loneliness and observations of the humans he watches over, and yet believably other-worldly. I loved the concept of him being connected to time - his little cog that he holds when he's sick was adorably sad - and their romance was sugary sweet and exactly what I'd hoped for. The whole plot had a funny, comforting feel, like an old children's novel, something I've never come across in a modern book, and loved.

I had no complaints whatsoever with Timekeeper and loved it wholeheartedly.

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.
dolorosa_12: (le guin)
[personal profile] dolorosa_12
My wedding is fast approaching, and while I think Matthias and I have that under control (it'd be a bit late if we were still running around planning it, given the wedding is in two and a half weeks, after all!), we've only barely begun planning our honeymoon. All the flights and accommodation are booked, but we haven't yet started to plan what we actually want to do in the places we'll be visiting: Budapest, Vienna, and Prague. That's where you come in.

I had great success earlier this year asking my Dreamwidth circle for recommendations for things to do in Iceland when visiting with my mother -- people made fantastic suggestions, and the two of us were able to put together a good itinerary, and we had a fabulous time. Does anyone have similar suggestions to make for any of the three cities Matthias and I will be visiting?

Things we like:
- art galleries, museums, cool old buildings/architecture. We wouldn't want to spend the entire time doing nothing but visiting museums, but one or two in each city would be nice.
- walking, especially in quirky/pretty/interesting parts of cities we've never seen.
- good food and drink. He likes beer, but will probably have done investigations of his own and have that covered. I like coffee.

If anyone has knowledge regarding public transport (if there's some kind of 24-hour travel pass or the like, or if we need to pay on buses with exact change, or other local quirks to public transport systems), that would also be super helpful. In all three cities we'll be staying in hotels that are reasonably central. We will be in each place for roughly two full days and three nights.

Thanks in advance!

From bad to worse...

Jul. 16th, 2017 03:24 pm
snapdragon76: Starlight by Muse (starlight)
[personal profile] snapdragon76
I am sick and tired of being the Universe's butt monkey. We're losing our cable and internet access this week due to the fact that neither mom nor I have enough money to pay for it. The cable I can deal with, but with no internet access, I'm even more cut off from the world than I normally am. I mean, I can't check my emails, use YouTube or Netflix. I can't even access my DVR. It sucks. I mean, how is this my life now? I was supposed to be working as a librarian by now, and here I am, stuck living at home, barely able to scrape by. I've been living hand to mouth for way too long. I'm 40 years old, dammit! I'm supposed to be living like an adult!

I honestly don't understand why life keeps shitting on me over and over and over again. All I want is a basic, simple kind of life. A home of my own, financial independence, a career I'm happy with, maybe some time to travel and pursue some of my hobbies. Not this perpetual cycle of bullshit.

I'm mostly angry at myself. I mean, if I had a job by now, I could contribute more to the household and maybe we wouldn't be struggling just to find food to eat or trying to pay our bills like normal people. And this whole cycle has done a major number on my mental health. I've had more dips in my mood these past few months than I ever have since being diagnosed with Depression. It might be partially environmental, but I dunno if my brain chemistry has changed or not. I can't go to the doctor's to find out since apparently we're persona non grata amongst our small group of friends and we can't get rides anywhere.

I can see why people who are poor can sometimes think they're being punished. I get that feeling sometimes myself. I don't know what we're being punished for. If this is because I've started drifting away from my faith than I'm not even sure I want to be a part of a faith that advocates punishing their followers in such a way.

So, needless to say, my activities online will be limited for awhile. I still have my phone, but I don't know how much my data plan will support my activities until we can get back online. I'm going to try to do as much as I can today while I still have access.

Some birthday, huh?