On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!
Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.
I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. loracs and I will be the only ones to notice.
I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.
After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.
On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)
On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.
Back in 2008, Gandhian pilgrimage that ended at Calais.
And his present (surely it is the same guy) simple life agenda has crossed my horizon heretofore.
My dearios, I give you I live a healthier life now I’m free of the trappings of modernity.
O, lucky old you, a healthy bloke with sufficient resources to undertake this project and pontificate about it. You are not just lucky to be 'born without any serious long-term health issues' - this is due to various factors including maternal nutrition and antenatal care, vaccination against common childhood diseases (even if he didn't get these, and I bet he did, he would have benefitted from herd immunity), i.e. the benefits of modern medicine and sanitation.
Also, I have no time whatsoever for anyone who dismisses other people's experiences of pain: there is a man who, we must suppose, never sat an exam while doubled over with period pain, or suffered a migraine. Not at all rare conditions. Your body is not 'always aiming for balance and health'.
And we observe that he has had a vasectomy... because one of my questions (among the many stimulated by the thought of all the technological advances that have made women's lives so much less arduous, which I remarked on when his bogosity first impinged upon my aghast gaze), wot abaht contraception?
Perhaps we might introduce him to the notion that being regularly flogged with a large codfish is a cure for pretentious woowoo?
(And do we think that his simple austere life is 'more work for other people', like the process that gets his handwritten ms - written on tree bark in berry juice, we wonder? - from his simple cabin in the woods to the Guardian website?)
Lotfi Zadeh: Fuzzy Wuzzy wuz a logic.
Len Wein: beloved comics guy
Jake LaMotta: lasted remarkably long, for a boxer
Lillian Ross: wrote a fascinating peek into that great big wonderful dysfunctional family known as
The New Yorker. (She did a deliberate Good Grief, It’s Daddy)
Stanislav Petrov: saved the world
He played only one more season, then did a book of his poems & paintings and went to Hollywood, where he had a number of successful films including playing the Black frat leader in Revenge of the Nerds. He was also in my favorite granfalloon, Star Trek, playing the Maquis leader Cal Hudson in Deep Space Nine.
ETA: In 1968 Joe Namath shocked the football world* by growing a mustache. Casey & Jim Marshall had been wearing them all along, but they didn’t count, perhaps due to lack of contrast.
*Shocking the football world has never required extreme measures. See Kaepernick, Colin.
Meanwhile Tangerine, still hungry, orders some pizza. He heads out the front door in the hope of intercepting the pizza before anyone else (Melanoma, say) can get to it. There he encounters Oliver the Paper Boy dropping off another newspaper to add to the growing mound of papers composting on the front porch. Sensing a potential audience, Tango begins a tirade on the virtues of whiteness. Oliver is not delighted by this.
Oliver is still quite young, but he's old enough to recognise bullshit when he hears it. He responds with a counter-argument as the pizza delivery person arrives with Tangerine's breakfast.
"Hey matey, do you want this pizza, or would you rather just stand there arguing with the paper boy?"
All of a sudden, the pizza is forgotten as Tangerine, Oliver and the pizza chick are overcome by an irresistable urge to perform The Dance Of Horrified Greeting for... a repair person?
Startled awake, Melanoma concedes that yes, maybe the TV could do with a tune-up or something...
Wait, what? That's not a TV repair tool!
WOOOP WOOOP WOOOP!
WOOOP SCHLOOOP SCHLUUURRRP! There goes the TV...
Tangerine bawls his eyes out, weeping for his lost TV, his lost innocence, his missing personality. Without a TV, how will he pass the time now?
He recalls his breakfast, still sitting out on the front porch.
Melanoma's response to the TV being reposessed is withering. "You idiot! You haven't got the brains God gave a pickled onion. I TOLD you to pay those bills. This is YOUR fault."
"Ah well. We'll always have
Actually read this week:
- Smile by Emilee Martell (DSF)
- Farewell, Amanda by Buzz Dixon (DSF)
- Planet of the five rings by Marissa Lingen (Nature Futures)
- An Averted Tragedy by Brian Gene Olson
- Contractual Obligations by Jessica M. Kormos
- Nothing Between the Stars by R.W.W. Greene
What I've read: long fiction
Banishment by M.C. Beaton, which is the first of six apparently-fluffy Regency romances about six beautiful sisters and a malevolent stately home, recommended as a Yuletide fandom (thanks ceb for the pointer!) This one was indeed the promised fast, lighthearted read, in which the family lose their beautiful stately home and much of their wealth, and (some of them) begin to learn Important Lessons About Not Being Awful To Other People. And the first of the beautiful daughters finds true love, etc. The remaining five in the series are now on their way so I can find out just how malevolent the house gets ...
While Tangerine (who has, you may recall, claimed the only couch in the house) sleeps, Melanoma is overcome by hunger pangs and visits the local diner.
But wait! What light through yonder window breaks? Is it Juliet? No, it's a Zombie-American rising up through the footpath while Melanoma dines inside.
She finishes her meal and emerges from the diner, only to be accosted by the zombie. She is not in the mood for this shit.
"Arrrghh, mmbblgggghhhrrrr! Hey lady, those are awfully tasty looking thighs you have there!"
Melanoma snorts disdainfully, spins on her heels and heads straight back into the diner for another cuppa. Clearly it's gonna be one of those days...
It seems that the Zombie-American is still waiting for her when she's done with her second coffee. Impressed by her unbelievable body odor, the zombie tries to make friends with her. This is not easy when one's first language is groaning.
Zombie: "Okay, arrgghh, mumbbllerrggh, seeya round!"
Melanoma: "I hate my life."
Mel decides that this unpleasant encounter might as well be useful for something, so she grabs a pic of the Zombie-American as she departs, with the idea that she may post it on the blog that she's just starting up.
Unfortunately, Melanoma's photography skills are at approximately the same level as the zombie's hygiene skills. Her blog's certainly not gonna go viral this week.
What I read
Finished Boys will be Boys, which was still very familiar although it is many years since I last read it. Wonder if Turner would really have liked to be writing something a bit more serious about matters of popular culture; and would have liked to be nerdish in the archives of the publishing companies, because there are sometimes wistful asides about the mysteries that might be solved thereby. Pretty sure this is where the very youthful oursin first acquired that apprehension that each generation disses upon what the young of next are consuming (whether print or radio or more latterly other media) as A Road to Ruin (I wish I could locate my copy of his Roads to Ruin).
Also finished The Witch of Syracuse: worked well, did not have that sense one so oft has when scattered short stories on a character/s are brought together of 'fix-up', but that it worked as a narrative arc. Also thought it worked well on the historical contingencies, nature of the deities, etc. (Very unfluffy Hellenic/Punic goddesses.)
Being somewhat smitten with travel angst, read various short things, comfort re-reads, etc.
Did read the novella Suradanna and the Sea by Rebecca Fraimow (2016): very good, even though I couldn't remember why or when I'd downloaded it.
On the go
Finally began Victoria Bates, Sexual Forensics in Victorian and Edwardian England: Age, Crime and Consent in the Courts (2015) - very good so far.
Also currently in medias res, Patricia McKillip, Kingfisher (2017) - very good, but my bar for riffing on/mashing up Arthuriana is set very high with Naomi Mitchison's To the Chapel Perilous.
*Among other sights seen today, Rynek Underground.