Time to catch up after not being here for a few days, eh?
My painkiller prescription, like many people’s, comes up short, largely because of the fear that the medical industry has of prescribing opiates — doctors who are too generous with them (even with patients like me who have diagnostically verifiable pain) face investigation and even criminal prosecution. This has left much of the medical community with the notion that they should strive to eliminate half of someone’s pain rather than all of it… As if halving chronic pain does anything. For those that haven’t lived with it, chronic pain is like water drop torture, and because of it’s constant nature, if it can not be eliminated completely, it is at best slowed down — but eventually, it still wears you down. My prescription refills on a weekly basis, and this leaves me with two choices. First, I can take it at the rate at which I need it, which means that I will have four or five “good days” followed by two or three brutally torturous days when I run out. Second, I can spread it out over the week evenly, meaning that every single day — or at least every single evening, when I’ve run out — is going to be horrible. Right now I have been doing the second, doing the prescription “by the book”, and it’s been very difficult. Even when I’m on a full dose of painkillers, the muscles in my upper legs and to a lesser extent shoulders are throbbing and feel like a perverse mix of being twisted, crushed, and scraped off the bone, which I’m sure is a mix of tolerance and the disease’s progression. Sitting still is painful enough, but the thought of having to walk up stairs or even stand up fills me with horror… This is a large part of why I have not been posting very much. I have to be very careful about conserving my strength, and it goes first to Nefarious, making sure that I am able to be the parent she needs, then to Caitlin, then to “real” work, and finally, to the internet.
I’ve been having a lot of nightmares, which historically is unusual for me, last night’s being obsessed with time travel. I don’t really remember it clearly enough to tell you the narrative, but it fell somewhere between Primer and The Time Traveler’s Wife (both movies that I enjoyed and recommend by the way, and I think I should mention the latter comes out on DVD in about a week)… a confusing set of overlapping jumps through time with something terrible but largely unidentifiable happening. I kept waking up from the pain and when I would manage to fall back asleep I would re-enter the same dream — this is a fairly normal thing for me… A coherent dream world will exist for a night, or a few days, or sometimes even years, and every time I fall asleep I re-enter it where I last left off. Talk about dreamtime! For good dreams this can be comforting, knowing that when I sleep I will go back to that place, but for bad dreams, it’s like awaiting a punishment you know you can’t avoid. Anyway, confusion along with pain and injury with blurry explanations… While I don’t subscribe to the idea that dreams usually reflect much of waking reality, I think here we can say different. At least I do like time travel conceptually — I was deeply moved by the story of real world scientist Ronald Mallett, one of the few physicists seriously tackling the problem of time travel, who has dedicated his life to solving the seemingly impossible task so that he can travel back in time to save his father who died of a heart attack at the age of thirty three.
Now on to warmer things I think?
Nefarious and I have done some fun projects this week. After our last fiasco with stilts, which were a bit of a failure, we decided to make some more traditional stilts using coffee cans and rope. DIY stilts part two worked much better than the first set, and, to my disappointment, they are also much louder, especially because they can be filled with stuff that rattles.
Another project was to see if I could use my drill as a lathe. While I was able to carve a hardwood dowel accurately enough (in terms of finding the centre, so it would spin correctly) to give myself a good start, I found that once I started working it that instead of moving toward an increasingly centered condition that it actually worked its way more and more off-center as I worked it with the Dremel. I was able to make a simple chess piece, but it wasn’t easy, and it really did not turn out very well, so I consider the project a failure. I suppose I could make a jig that held the other end like a real lathe does, but it’s not that important to me and it’s really much easier just to carve the whole thing by hand instead… or watch Craigslist for a cheap wood lathe!
I’ve been doing lots of book and writing work, and my $10 Dynex keyboard is finally starting to die — it has served me well though, and has survived a hefty dose of dust, liquid, and most of all, getting stepped on many times. A good value. However, with the letter “u” regularly failing on me and a few keys (on the vestigial numberpad luckily) outright missing, it’s time to upgrade. I picked up two new toys for myself, a cool blue glowing keyboard, as well as a pair of noise-canceling headphones. The keyboard looked like it might be fun as well — if there was an API for it that let me individually address the lights on the keys, I wondered if I maybe I could write a simple video game that took place entirely on the keyboard. Unfortunately the letter “k” didn’t work at all, so I had to return the keyboard the next day and am back to the $10 special. I almost returned the headphones as well, because there was a lot of buzz and distortion on it, but after a little testing I realized that the noise is being produced by my computer doing a piss-poor job in isolating the sound card from electrical system noise.
This is actually my second pair of noise canceling headphones, the first being a set of wireless Sennheisers that I ended up returning because the sound quality was so bad thanks to radio interference. When I was at Future Shop looking at headphones I pulled out my knife and started cleanly cutting open the cases so I could try them on — knowing that many headphones look pretty but feel bad to wear, I’m not about to spend a couple hundred dollars on a pair without trying them on, and I don’t really feel any guilt in doing so. I was however met by an exasperated salesman running across the store shouting at me that I couldn’t keep doing it. He was mad at first but in the end his commission made up for the effort he put into cleaning up my mess (at his insistence — I would have gladly done it myself).
Nefarious and I also went game shopping, with her picking one game and me picking two. Like most kids, she gravitates toward the games that have lots of action, noise, and general childish hilarity. I wasn’t sure about it at first, but after a minute of begging I agreed to get an electronic Whack-A-Mole game. The moles light up either red or green, and you have to hit your moles as fast as you can. It’s actually quite fun.
My choices of game were more cerebral, and I’m happy to report that Nefarious likes them quite a bit as well. I got Pentago and Rummikub. Pentago is a game where you have to make a line of five, and the board is split into four quadrants, one of which you can rotate 90 degrees on every turn. I’m not sold on the game — it seems too “simple” a la tic-tac-toe — but I have not played it enough yet to say that with certainty. Rummikub is fun — it’s basically gin rummy, the card game, converted into a tile based game — and it also serves as training for starting to play card games as well. So I think next time I see a deck of cards in the grocery store checkout’s “impulse buy” section I’ll grab them and see. I don’t normally like games like Rummikub, which are really just games of chance rather than games of skill, but it’s surprisingly enjoyable, and is a fairly long game so it kills quite a bit of time.
It’s good that it kills time, because Nefarious’s school had yet another lice outbreak, sending home many of the kids in her class — something like half the school was infected again. I think the source of the outbreak this time was one of the older kids… I talked to the school admin about it for a while as they confirmed that Nefarious was lice-free, and one of the problems is that some parents seem to see the whole thing as “shameful”, so they hide that their kid had it and coach them to lie, which of course just makes the whole thing worse by keeping the outbreak going. The principal was telling me that in twenty years of working at the school he’s never experienced anything like this — and I agree… I don’t remember anything like this when I was a kid. Luckily Nefarious had only a few hop over to her from the other kids, so it was very easy to deal with and there was nearly nothing to do.
Other than that, I’ve been doing lots of cooking and continue to be totally in love with cooking fish. It’s by far my favorite meal, and I think I’m quite good at cooking it, and my mouth waters just thinking about it. Sure, I have trouble holding my food down because I’m often nauseous from pain at supper when I’ve been cooking because of having spent a while on my feet in front of the stove, but still, I always look forward to that meal even if it doesn’t stay in my belly for long, yuck.
My usual fish meal is vegetables, noodles or rice, and the fish, cooked with a simple sauce. The sauce is usually lemon or lime, chopped garlic, salt, a little sugar, and sometimes grapefruit juice, chopped ginger, sesame oil, or chopped onion as well. A fairly simple flavor on the whole, that really brings out the taste of the fish. I pan-steam the vegetables with a little of the sauce, and while I’m doing that the fish marinates a little with the remainder. I then add the noodles or rice to the vegetables at the same time as I start cooking the fish in lots of butter (which also becomes a sauce) and the spice/herb/citrus mix and it just melts in your mouth… So delicious. I could eat it every day.
Anyway, I’ve been experimenting with glasses-free “jitter” 3D, so I think I’m going to take a break from must-do work and that’ll be today’s diversion.
21 Comments
Shannon, about those stilts: I went back and looked at the pictures of the first stilts you built, and I think I may have found the problem: The top part (the “handles”) need to be long enough to reach the top of Nefarious’ shoulders. Right now, they’re short enough that she puts them in front of her shoulders- putting them behind is much more stable. The trick is to wedge them behind your shoulders so you have three points of contact: the feet, the hands, the shoulders, rather than just two. The three points have a much more stable configuration (effectively a triangle, although in this case in a straight line). It makes a huge difference.
I just wanted to say the headphones you have our a good investment, I sell them at a retail store I work at and their amazing, but be warned we have them on display at our listening stations and they tend to crack not super easy but easy enough that I make sure you didn’t drop them often, or at all really.
I used to get lice allllll the time in elementary school. ALL of the floors were carpeted, except of course the gym. The library had a giant stuffed turtle in the middle of the room and big pillows for kids to lay against. Wanna know how often they sprayed the school for pests? ONCE! a year, during the summer. My mother checked.
I spent my years there with short, boyish hair. D:
Would you reconsider cannabis as a pain killer? I know you’re not fond of the changes it makes in you, but the pain must be causing its own changes…
I was going to venture the same question/suggestion as LOTN. But care must be taken to find the right strain. I have only used cannabis twice, both times to combat nausea and back pain. The two strains that I tried were definitely different; one was miraculous, the other I wouldn’t try agian. Though, with your level of pain I wonder how effective…
And Rummikub, my aunt has played the game constantly for years and she is nearly impossible to beat. When she finishes a turn, the ‘board’ looks none the same – she’s savage when it comes to shifting and rearranging tiles, bending them to her will. It’s like a puzzle.
No. If I smoke pot I’m totally useless. I’m not there for Nefarious or Caitlin or even myself — that is, I can’t write, program, nothing — if I’m high. That’s not where I want to be in my life, even if it is a relatively effective painkiller. The baggage it comes with is not worth it to me. One of the reasons I like opiates is that they don’t affect me mentally and I keep a completely clear head.
The real problem with most drug dosing is that it’s not based on reality. Most drugs, other than those given via IV, are dosed as XX mg/day for all patients. The problem is, that’s not the way your body uses them. The standard dosages are based on a 120 pound adult. While 120 pound adults do exist, the vast majority of people weigh more. If you weigh 180, you’re only getting 2/3 of the dosage you need. At 240, you’re only getting half. If you talk to your doctor about this, and ideally go in with some studies that show it happens, you might be able to get more.
I just read on CNN.com (I think) about a study about overweight breast cancer patients. They have a much lower success rate with chemo. Doctors had always just assume it was due to the fact that they were overweight and therefore defined as less healthy. This study increased dosage proportional to body mass and, very unsurprisingly, the success rate became the same as non-overweight patients.
Shannon,
RE: Pain — Have you thought of getting a TENS unit (or even a muscle stimulator unit) and see if you can cancel out the pain reception with the current? I have heard that it’s possible to use current to cancel out the pain receptors.
And, as far as your lathe/ drill issue…. I am in a similar boat and so I can give some suggestions to you.
If I remember correctly, you know Bre Pettis. You might want to check in with him on his Makerbot (makerbot.com) because he has (as a kit – or prints) a personal 3D model printer. It uses different types of plastic and an extrusion unit to create the modesl. And– you can adapt it to be your own personal CNC machine using a dremel I think.
And with your skills, I’d suggest you look into it– and probably get a drill or dremel unit- make the cnc unit and install a seperate drill/dremel unit and use the X/Y/Z coordinates as a “lathe” – which should make any item you want – very precise. And – in case you were wondering …. the Makerbot uses open source porgramming/software — so you could have a field day with your programming abiliites.
(For me, I am trying to get the money up for one of the Makerbot kits- so I can build it — and then I’m going to see about making one from scratch (and fashion it as a cnc machine) ) — If I succeed, it will definitely be a feather on my resume` (which I could definitely use)
Have a great day Shannon, and Good Luck!!
Ed
P.s. Shannon,
You forgot to mention in time travel, “The Butterfly effect”, in which the person slips back and forth in his own timeline.
(and don’t forget Stephen’s “A Brief History Of time” ) :)
Have a great Day Shannon!
Ed
keyboard solution:
https://www.thinkgeek.com/computing/keyboards-mice/cb22/
Shannon, have you tried to contact a Hospice or pain-clinic to get a medication “costum made” for you? Over here in germany, we have the same problems with description of pain medications, to the most part due to doctors who simply don’t understand the issue. Hospices do not only offer palliative care but also medical help for chronic pain.
Thanks for that keyboard link, that thing looks like a ton of fun!
MissJanet, as well as my regular (and MD specialist) doctors I’m being seen by a dedicated pain clinic, yes, but to be honest, it really feels like a dead end. It’s been a really disappointing uphill battle.
time trav: https://discovermagazine.com/2010/mar/02-the-real-rules-for-time-travelers/
I love you.
The painkiller situation is truly horrific. My pain is due to extreme endometriosis and a few autoimmune disorders that all feed off of each other, and it’s like pulling teeth to get anything. My prescriptions never last nearly long enough; doctors seem to fail to realize that people with chronic pain often build up a pretty good pain tolerance compared to other people, so when we’re in our usual amount of pain, we’re talking about pain that would knock a person flat out. It’s not just built-up drug tolerance, it’s a prescription that’s entirely too weak to manage what we’re suffering, if I’ve worded that to make sense. Like giving a baby aspirin to a wounded tiger, that’s about the best I can compare it to. Of course, the pill seeking “patients” and doctors splitting scripts etc. round it off really well. I’ve found that THC seems to worsen my pain among other things; people (esp. doctors) can’t, or refuse to, believe that I function perfectly and normally with opiates. My apologies for the rant, but to put it plainly, the majority of docs just suck in this area.
On another note – how loud is the Whack-a-Mole game? My son wants one, but I’ve hidden too many toys that proved to be hideously loud upon opening.
Shannon,
Here is a dremel lathe link for you:
https://www.thingiverse.com/thing:1570
Good Luck!
Ed
Hey, Shannon. I know 100% how you feel as far as chronic pain and pain killers. I’ve been living with dgenerative disk, joint and bone disease as well as spinal stenosis. I’e been seeing a pain clnic for almost four years. They have refused to up my doses for almost two years, saying I’m at a very high dose as it is. Currently I’m on 160 mg of Oxycontin and 120mg of Roxycodone a day. That barely puts a dent in the cripling pain I go through. Like you, if I take my meds as I need them I run out almost a week early, and if I take them as prescribed, I spend the day in utter agony. It really is unfair the stigma that’s put on people who truly need large doses of opiates to function. I have a wife and four boys and there are days it takes all I have to get out of bed and make brakfast for them without collapsing under the pain.
I’m no expert in painkillers but I CAN tell you that I love Whack-A-Mole. I got it for Declan at Christmas because I knew it would hold his attention. What 3 year old boy doesn’t want to hit stuff that lights up?
I played Rummicube once in L.A. and lost to a 7 year old. It was a great game, despite the loss. I’ll have to pick it up and improve my skills.
My first lathe was a cordless drill wit5h a razorblade as a gouge, my second was a cordless drill with two vices & a nail for a tailstock, and a Surform plane! That second one actually succeeded in making an ebony walking cane (with a lot of patience & finishing sanding).
There are some halfway reasonable drill lathe kits out there for very little money indeed, but I can’t begin to describe how much better even a cheap proper lathe works. I’d only used machine lathes previous to getting mine, & had no idea how fast hand turning could be for prototyping stages before the hundredths of millimeters start to count ;)
Turning wax blanks to be cast in metal was interesting as well.
It’s an addictive process, mind you.
i want those headphones but they are very expensive. i used to get lice very often when i was young because i had very long hair and spent a great deal of time with a huge variety of other children. once i got lice that were resistant to the NIX shampoos and other treatments, and my mom let me dye my hair purple with a permanent dye and it killed the lice. and kicked off my on-going and long-lived hair-dye addiction.
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