Wow. Just wow. Really. Wow.
Gripping, taut sci-fi. Thoroughly enjoyable.
Good story; overly artistic direction.
An important story told beautifully.
Entertaining revamp of Superman’s story.
Compelling, authentic science fiction. Spooky.
It’s a strange thing, having a nervous system that doesn’t quite work right. I’m fortunate, I suppose, that my problem is an excess of sensation rather than a lack of it. But it doesn’t generally feel like good fortune when the misfiring, overactive nerves throughout my body are randomly and incorrectly informing my brain that something is terribly wrong.
It’s a condition that, for lack of a more specific diagnosis, is referred to as peripheral neuropathy.
I live day to day with pain. It’s not “real” in that there are no knives or fire or crushing blows to my arms, legs, neck, and face. But it feels real. Right now, as I type this, it feels as if I’m being clubbed behind the legs over and over again, and like fire ants are swarming under my skin in my arms, shoulders, and neck. The nerves in my feet are signaling my muscles that they should be contracting hard, for no good reason, so my feet are partly curled under, unless I fight against it, which at this moment I’m doing by pushing my toes against the floor.
It’s terrifying to me to know that this is a moderate amount of pain compared to what I feel without medication. Skip one dose of the medications I take to calm my nervous system, and a few hours later, I’m literally writhing on my bed in tears from the pain. Skip more doses than that, and I don’t even want to think about how it would feel.
I take an assortment of pills every morning, a few at midday, and more at night. These are my thin line of defense.
We don’t know why my nerves do this. We probably never will. I have recently discovered that adding a small amount of ibuprofen to my regimen makes a huge difference in how I feel, but after my gastric bypass surgery a few years ago, I’m not supposed to take any of the NSAID-class medications like that, so I’m playing with fire by doing so. I don’t, at present, care. It helps so much that I’m willing to risk it.
The level of my pain ebbs and flows over the course of the day. It’s usually worst in the two hours before my medication times and an hour or so afterward. The rest of the day, I usually can function okay, depending on various factors.
Cold is one of those factors; the cooler the air around me, the worse my nerves get. I dread the oncoming winter; already, the nippy fall air is causing taking my daughter to school in the mornings to be difficult.
Another interesting aspect of all this is that a side effect of overactive nerves is that contact, even gentle contact, can at times be painful. This is why you often see me show up to video meetings in my oldest T-shirts and soft exercise shorts or sleep pants: these clothes are soft, so they feel less like sandpaper. It’s not always enough, but it helps.
All this said, I’m incredibly glad that science has led to medications that help. There are times when they’re not enough, and we continue to look for the perfect cocktail of meds that keep me functional even more of the time, but I know from past experience that without these drugs, I would be in sad shape indeed.
In general, I know I’m a lucky guy. I have a family that helps me cope, colleagues that tolerate all the random downtime I have to take, and am able to afford medical care and the medications that keep me going. I’m fortunate to live in a time when there’s any form of treatment at all for this problem, even if it’s not a cure. There are times when I don’t feel lucky (it’s hard to be chipper when you’re in agony), but I know deep down that I really am.
Beautiful. Enthralling. Almost accurate physics.
You’ve probably noticed that I haven’t been blogging much lately. There’s a reason for that. I haven’t made it a secret that for the past couple of years I’ve been battling some pain issues. It’s been almost a year since I had spinal surgery, but that surgery didn’t help. In fact, my pain has continued to worsen. There’ve been a lot of tests, we’ve tried a lot of different medications, and so far nothing has panned out.
It’s also possible that you’ve noticed that over the last couple of weeks, my availability has been spotty at best. That’s because my symptoms have taken an interesting turn, resulting in even more tests and increased difficulty in sitting and working. Last week, I had MRIs done of my brain and neck. These came back perfectly normal. That, of course, is a good thing!
On the other hand, it also means that we still don’t know what’s going on with me. However, we do have a new theory: we now suspect that the problem lies in my shoulder. The trick is that I have been denied insurance coverage for the MRI required to determine if this is the case. I don’t yet know why. My doctor is trying to find out. There are some quirks to how Blue Cross handles insurance for imaging tests that we have to sort through.
On top of everything, I realized the other day that if I don’t move my left arm at all—and I mean at all—the pain subsides to a remarkable degree. that is to say that sometimes, if I keep my left arm entirely still, I have almost no pain at all. Unfortunately, this also makes it really hard to type, especially since it doubles the strain on my right hand, which has carpal tunnel problems. Since I write technical documentation for a living, that of course poses a problem. For the past few days, I have been trying to experiment with speech recognition, but its limitations are frustrating. In particular, technical terminology doesn’t work well. I’ll keep trying to figure out ways to do my work as effectively as possible, however.
I’m going to talk to my doctor tomorrow to see if an x-ray would at least help a little bit in trying to confirm or deny whether we figured out the actual problem. If not, and we’re still unable to get Blue Cross to cough over the money, it’s possible I will pay for the test myself. That won’t be cheap. But after two years of sometimes incredibly agonizing pain, it might just be worth it.
We’ll see what happens.
By the way, if there are any bizarre errors in the text above, it’s because I dictated this entire thing. I kept my eyes open for transcription errors, but let’s face it: voice recognition can still be pretty flaky.
I’ve released OK-Writer 1.4! The latest version of my Mac OS X word processor aimed at children and others who need a simplified user interface for word processing. The new version has new retina-quality icons, improved user interface layout, full-screen mode support, and other improvements.
One of the things I’m particularly proud of is the unforeseen use of OK-Writer by people with disabilities, especially vision problems. Its speak-as-you-write features have proven useful for the disabled. That’s a great source of personal pride for me.
To get a little more specific about what’s changed in this version other than the retina icons, I’ve spruced up some of the innards a bit to prepare for some future work I’m planning to do, and obviously the background is no longer brushed metal, but is a lovely periwinkle-like blue. I’ve fixed a couple of minor bugs, and the buttons don’t drift around slightly crazily when you resize the window anymore.
Full-screen mode has proven popular with Sophie, too. I may do some experiments with ways to make that experience better and/or more fun in the future. I made sure to make that code conditional so that the program still works on OS X 10.6 upward.
I did drop PowerPC support in this release, and I dropped support for Mac OS X 10.3 through 10.5. But this version is built as a 32/64-bit Universal binary. It was time to cut the cord on some of the older Macs, but the older version of OK-Writer is still available on my web site for people who need it.