Rants and Revelations

Blogging Against Disablism Day 2008

Frankly, I don’t even know if I count as “disabled”. Certainly, the people who see me walking around in public don’t see me as disabled. They probably see me as fat and lazy, because I seek out a chair and sit down as soon as I can, or take the elevator even for just one floor, or even sometimes ask for one of the wheel chairs they keep locked up near the customer service desk. You see, what I have isn’t totally disabling, only inconveniencing.

I have knee pain. The pain is constant, but it increases when I do things (sitting with my knees bent under my chair is the worst, standing is the second worst, walking actually isn’t as bad as standing, although walking slower than my natural pace is pretty bad). I’ve had it for 2/3rds of my life now, and it gets worse with every passing year. It used to just be a dull ache, with very rare intense stabbing pains. The first time I got the stabbing pain I cried out and had to sit down for several minutes while I tried to figure out how I was going to get to my car, and at first I probably only got it about once a year or so. Recently the frequency of the stabbing pains has increased to about once a week. Every year I think “I can take this, but if it gets any worse I won’t be able to stand it”, and every year it gets worse, and I somehow manage to stand it. There are times when I think “I hope I die young, because after 30 years of ever increasing pain I’m not sure I can stand another 30 years of this.” It already nearly killed me once, because with the constant background of pain I mistook a burst appendix for trapped gas - by the time I bothered to see a doctor, I had gangrene in a couple of feet of intestine.

It constrains my life, and in some ways it defines it. Over the years, I’ve given up cross country skiing, orienteering, backpacking, canoe tripping, mountain biking, and probably other things I’ve forgotten, all because of the pain. I’ve lately taken up kayaking to try to recover some of that feeling of freedom, but I’ve discovered that my elbow joints are just as much traitors to me as my knees - the pain in them is increasing gradually and I wonder how many years I’m going to get out of them before I have to give up that as well.

The thing about pain is that you can make a conscious choice to accept it if there is something you absolutely must do, or even if there is something that you want to do so much that the resulting escalation of pain is worth it. That’s why I don’t consider myself disabled, but merely inconvenienced. Pain is like a bank account - I can choose to “spend” it, or I can try to conserve it. That’s why you’ll see me walking around Oshkosh, or why I was able to rough-house and play with my kids when they were younger. I “spent” that pain, and while I’m still making the payments now, it was worth it. But that’s why I’ll grab a wheel chair or find a bench to sit on at the mall - if I don’t spend it now, I’ll have that much more to spend on something worthwhile.

Sometimes I take a cane when I go places. It doesn’t help a lot, but it does seem to change people’s attitudes when I’m seeking out some place to sit down. Like I said, I need to keep my knees straight when I’m sitting. If I don’t have my cane, people trip over my legs and glare at me for daring to intrude on their space, but if they trip over my cane, they apologize.

My experiences in the wheel chair have been enlightening. I’ve had store clerks talking to my wife as if I were unable to make my own decisions, or ignore me and serve customers who were standing behind me. But the difference between me and someone who is truly disabled is that if I choose to, I can stand up and end the discrimination. I never forget the people who can’t.

My back/neck pain is mostly under control thanks to a chiropractor, some stretches, and some adjustments to my work environment both at home and at work. So of course, that occasional stabbing pain I get in my knees has flared up. So far, only in the right knee, and so far only enough to make me wince rather than the full blown flare up which has, in the past, made me fall to the ground writhing in pain. I’m sure it will get there. In the mean time, I’m getting constant small stabs doing anything that puts more than 1/2 my body weight on that leg, such as going up stairs, or transitioning from seated to standing or vice versa.

My back spasmed up in the middle of the night. Actually, it was about 5:30am so I just got up. But because I’m working on my Functional Spec, instead of spending the day lying down to relieve the pain, I’m going from chair to chair trying to find a comfortable position to type.

On Monday night, I was supposed to have an MRI on my elbow. However, once they got me in the tube and took a series, they said that my elbow was too close to the edge of the tube and they couldn’t get a good image. So I was scheduled this morning for an “Open MRI”.

An Open MRI is a gigantic upright cylinder that looks like a Mayan ruin with a slot in the side that they slide you into like a pizza into an oven. There’s barely enough room for them to slide you into this slot - later on I discovered that I could get my good hand up to my face, but only just. But before they slid me in, they put your arm into a ring that is plugged into the device - I suspect that’s some sort of focusing magnet. The tech said “I need to open your elbow up”, and so she put me into an extremely uncomfortable position, and then put weights on my hands and arm to keep it in that position and filled the space in the ring with cushions “so you don’t move too much if you start spasming”. I should have taken the hint and left immediately.

Anyway, after they peg you down in this uncomfortable position, they said “ok, this is a 2 minute series”, and you hear some thumping and whirring noises and then some pulsating noises. Then it stops and before you can say “can I have a second?” they say “ok, this is a 2 and a half minute series” and it starts making noises again. Each series got progressively longer until the last one, but because there was no time to flex my arm in the interim my elbow was getting more and more painful, my hand was going numb, and my upper arm muscles were spasming after about the second series. Before the 4 minute one, I yelled out begging for a break, but they either don’t hear you or don’t care. By the end of it, I was crying. I tried pinching myself or biting my lip or anything to distract me from the pain in my elbow, but nothing worked. By the end of the 4.5 minute one I was ready to tell them anything they wanted to hear. By the end of the 5 minute one I was ready to swear there wasn’t anything wrong with my elbow any more, or ever if that would make them happier, so we might as well stop right now.

But it’s over now, and I might regain the use of that arm in a few hours. I hope it was worth it.

(As the closest I’m going to come to acknowledging Talk Like a Pirate Day, I’m going to talk about blood.)

I had to have a 2 hour glucose tolerance test this morning. This involves a 12 hour fast, then taking some blood, then drinking some glucose drink, then coming back at 1 hour and 2 hours later to have some more blood drawn. Since that meant 14 hours between meals, and not being able to go to work in between the 0, 1 and 2 hour blood draws, I was anxious to get it over early as possible.
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My doctor says I’m incredibly low on vitamin D, probably because of Rochester’s perpetual gloom and my own vampire-like avoidance of direct sunshine. (In spite of the lack of direct evidence, I *am* a red-head and I get sunburn way too easily). He says that anything between 40 and 100 is normal, and anything below 30 is seriously deficient, and I’m at 17. I’ve got a prescription for mega-dose vitamin D tablets. I’m supposed to take one a week for 4 weeks, then one a month, and start taking fish oil as well.

He recommends this lemon flavoured Norwegian cod liver oil that he says tastes nothing like the cod liver oil of my youth. I don’t believe him - instead of tasting like vomit, it will taste like lemon-tinged vomit, I’m sure.

For two or three weeks I’ve been trying a different pain medication, a NSAID called “relafen”. I’m not sure if I’m imagining it, but it seemed to me that last weekend when I went flying I was more susceptable to motion sickness than I have been in the past. And yesterday while I was concentrating on something on my screen (ok, it was the live updates from the Giro D’Italia, not work), I suddenly felt like I was going to lose my balance and fall over, which is kind of odd to happen while you’re sitting still. I also seemed to have to remind myself to breathe when I was concentrating - but hey, it was a exciting mountain stage, what can I say? The “hey, I’m losing my balance” feeling just happened again today, even though the Giro stage I was watching work I was doing was pretty unexciting.

One web site listed vertigo as a very rare side effect of relafen. But why now after 3 weeks, and not back when I started?

Oh well, I’m seeing my doctor tomorrow. Maybe he’s got a different medication to try.

Once again into the breach, once again risking the severe depression that follows every previous attempt to do something about my pain. So it goes. The pain has gotten so severe that I really have no other choice. Just hope I can survive the let down when it doesn’t work.

So I have a new prescription for a new NSAID, and orders for x-rays of my knees and elbows, and a bunch of blood tests. And a promise that if nothing turns out, I’ll get a referral to a pain clinic.

The pain in my knees is really getting out of hand. It’s been getting worse for decades, but for the last couple of weeks I’ve been getting a stabbing pain on top of the usual diffuse pain - I used to get that every few months and it would only last for a day or two. My tolerance for any sort of activity has gone way down, and Alieve isn’t doing as much as it used to.

I was planning to clean out the basement and my office this weekend, and hopefully get out kayaking for the first time of the season. Instead, all I managed to do was replace the locks on the garage and clear out the cardboard boxes that have been waiting to be flattened to go out to recycling for months. Oh, and walk around the block once looking at the garage sale. And for that, I’m paying in agony.

I guess if I recover enough, I’ll have to do the cleaning out in short chunks of time every evening instead of one big weekend project. And hopefully fit in the kayaking one of these days.

(And yes, I am going to talk to my doctor. Not that I have an iota of hope that he can do anything.)

It’s a beautiful day. I should be out riding my bike, or kayaking, or clearing out the basement, or putting up screen windows, or getting IFR current again, or something. But I’m not, because my knees hurt worse than they’ve hurt in months, possibly years, and it’s a chore to walk down the stairs to get something to eat, never mind do something that involves using them for anything. And it’s that stabby pain that I get every now and then, as opposed to that diffuse pain that’s part of the constant background, and that pain does not seem to respond to Alieve at all. The diffuse pain doesn’t respond quickly or well to Alieve, but at least if I forget to take it for a couple of days I notice the pain level increasing. This stabby pain comes and goes on its own schedule.

Maybe I’ll use the time to fix the OpenID commenting on this blog (or at least get it back to the point where it works for some people, like when I use it myself from my Powerbook, but not for other people, like when I use it myself from my Linux computer at work). Or fix the long broken loader scripts on my waypoint generator site. Or see if I can get the Gallery upgrade to work this time. But I don’t feel like it - I’d rather just curl up and try to sleep. At least then I wouldn’t be aware of the pain.

They say “you’re going to feel a slight pinch” when they really mean it’s going to feel like they’re driving an ice pick through the roof of your mouth into your eye socket.

They tell you to sit up so they can take an x-ray while you’ve got a 2 foot long pipe cleaner sticking out of hole in your front tooth. Then they tell you to hold the film in place with your finger.

They keep screwing these things that look about 2 feet long into your mouth, and then pulling it out. I kept closing my eyes when they brought it out because I was sure it was going to be covered in blood.

All during the root canal, you can hear her stomach growling, and afterwards she tells you not to eat for an hour. Yeah, I bet you’re not going to wait an hour.

And after it all, they tell you you’re going to have to come back in a week for more pain.

I tried to take a picture of my gum stitches. I’ve taken better pictures in my life.
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I had peridontal surgery this morning. Evidently my bad habit of sticking sharp things into the gap between my upper front teeth has caused the bone to erode to dangerous levels. They cut away the gum down to the bone, scraped away accumulated crud on the bone, applied something to make the bone grow again, and stitched it back up. It wasn’t all that bad while it was going on, except the novocaine made my nose numb. But now it’s done and the novocaine has mostly worn off. And I’ve got the pain you’d expect from having your gums cut open and the bone scraped, plus the stitches are irritating the inside of my lip. The pain killer they gave me is making me feel bleary and very sensitive to movement, and doesn’t seem to be doing anything about my mouth. And I can’t eat anything that involves “incising” with the front teeth for two weeks.

This is less fun than I thought it would be.

Still muddling along on the project mentioned in Rants and Revelations » Stress, stress, and more stress. My boss wants my bit to be test-able and demo-able by the first of the month, and I’m not sure I can do it. I don’t think the other bits are going any better. The Chinese team have delivered something, but we can’t test it yet until my bit and Tony’s bit are finished. Kris is working on a bit that we were going to farm out to the Chinese team, but we decided it would be faster for him to do it than to try to explain it to them. It seems that in order specify the requirement in sufficent detail that you could just hand it over to a foreign team, you need a formal language. And the formal language we know best and can produce fastest is Java.

In added aggravation, just as I was turning into the parking lot at work this morning, my muffler started dragging on the ground. A quick examination seemed to indicate it was just the strap hangar broke, which is exactly what it turned out to be. Cheap, but time-consuming and annoying.

Meanwhile, the peridontist is going to be fixing my front teeth this Saturday. He says they have to make an incision in the front of my jaw, scrape out crud, and put in something to make the bone grow back. He says I won’t be able to “incise” for a couple of weeks.

Saturday is also the day when we have our MoveOn.org Call For Change party. I have a bit of a mental block against making phone calls to strangers thanks to an incident from my childhood, but maybe I can just play host.

On Monday, my 1U server goes off to the colo. I just got the network settings, so sometime on Sunday I have to take down the server and set up the networking.

I didn’t write a summary of the last couple of days of the Tour de France as I usually do because I didn’t actually get to watch them on TV until I got back from Oshkosh, and by that time the news was all about Landis’ failed drug test. I want to reserve judgement about Landis until we hear the full results of the investigation. But one thing I read in several discussions of this whole thing is “we should just allow the athletes to use whatever drugs they want”. This is a damn stupid idea for a couple of reasons, and I’d like to expand on this.

The first reason it’s a stupid idea is that athletes will do anything to get an edge on their competition. If everybody else is using drug X, then you have to use X or you’re going to be at a disadvantage, even if you’re a better athlete than them. The drugs would become just another arms-race situation. The various sports governing bodies have done what they can to reduce technological arms races - they want technology to evolve, but they don’t want it to decide competitions. Back in the days when fibreglas skis were new, the FIS had to step in and say that cross country skis had to be a minimum of 44 mm wide at the widest point, because people were trying narrower and narrow skis to get a speed advantage, to the point where a large number of competitors were breaking their skis in a race - if you didn’t break, you’d gain a few seconds over everybody else. The UCI does the same thing in bike racing with their weight limits on bikes. The limit is arbitrary, but you have to draw the line somewhere. If drugs got to be the next arms race, people would be doing major damage to themselves.

And that’s the second reason why it’s a stupid idea: athletes don’t care about the future. If you told an athlete that if they take this drug they’d win the Tour de France but they’d drop dead two weeks later, but their win would still stand, there would be a line-up around the block for the drug. How do I know this? Personal experience.

Most of my competitive life was in pain. I was pretty sure that continuing to compete would make the pain problems worse in the future, but I cheerfully accepted that trade-off. I’m not as cheerful about it now, but I stand by the decision. And I wasn’t competing for prize money, million dollar endorsements and world wide fame. The sports I was competing in were obscure to the point where most of my friends had never even heard of them. And I wasn’t even winning most of them - I never won a Canadian Championship in anything. In cross country skiing, I wasn’t even in the top 4 on our university team. But I loved the competition against myself, and the feeling of doing my best, and the knowledge that I’d tested my limits and come through them. I basically ruined my knees and condemmed myself to lifetime pain for nothing more than a feeling. Can you imagine what an athlete would do to himself if there was more at stake?