Dare to hope, prepare to be disappointed?

(No, this isn’t an Obama post.)

I went to see a new doctor yesterday. This was the first time Vicki has managed to convince me to convince a doctor to give me a referral to a neurologist. I’ve asked before, and the doctors always said “no, it’s not neurological”, and then given up on finding an orthopeadic or other cause. This time, I got my doctor to promise that after his idea failed, he’d refer me to a neurologist. And it did, and he did.

I hate to get my hopes up, but this guy (or rather his physician’s assistant) outlined a multi-pronged approach to figuring out how much of it is orthopeadic, how much is neurological, how much is caused by sleep apnea (evidently apnea can make you more susceptible to pain – who knew?), how much is due to rheumatoid arthris, etc. I’ve got a blood test script here (Comprehensive Metabolic, CBC + Platelet, Sed Rate, Protein Electrophresis, C-Reactive Protien WR, Creatine Kinase (CK), Angiotensin-1-Conv Enzime, ANA, Anti-Cardiolipn Ab, Lyme Antibody), then I’m going to have three days of a powerful steroidal anti-inflammatory (can’t remember the name, but I’ll never be allowed to compete in the Tour de France now), and three days of a powerful neurological drug. All I have to do is figure out how to accurately compare one day’s pain to another, something I’ve never been able to do. They’re also talking about various tests of nerve function and sleeping with a pulse oximeter and maybe even a sleep study.

Anyway, keep your fingers crossed for me. I would give my left knee to be able to cross country ski again.

Blogging Against Disablism Day 2008

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.

Stabbity stab stab

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.

MRI’ll Do Whatever You Want If You Let Me Out Of Here

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.