Sleep study

A few weeks ago, I had a sleep study. They wire you up with a bazillion wires and tubes, put you in a sterile room on an uncomfortable bed, and then say “sleep normally”. The reason for the study is that sometimes lack of sleep, especially because of apnea, is sometimes related to sensitivity to pain.

Today, I got the results. Highlights include

  • It took me only 14 minutes to fall asleep, but over 180 minutes to first get to REM sleep, and I didn’t get very much REM sleep over the course of the night
  • I experienced “arousal” (not sexual arousal, they just mean I wasn’t properly asleep any more an average of 38 times per hour
  • The “arousals” were closely correlated to snoring and some apnea, and are the probable reason for the lack of REM sleep

Upshot is that I’m going to get a “CPAP” machine for a few weeks to see if it helps.

Well, the disappointment didn’t take long in coming

Today, I got my second appointment with the new neurologist. After spending 3 hours absorbing the magic healing rays that are evidently given off by an empty exam room and a rack full of magazines that don’t interest me, (broken up by 15 minutes answering questions from a different PA than last time, most of which were already in my file), I got to see the doctor. And he did the physical exam that I’m already too familiar with, having had it more times than I can count, involving moving my kneecap around, pressing on my legs and knees, and all that shit, only to hear the all-too-familiar word “chondromalacia”. Yup, the same diagnosis[1] that I’ve had since I was 15. And since we’re on the endless repeat cycle, I know what’s going to come next – some barely effective anti-inflammatory pills and some physiotherapy that makes the problem far worse.

I might as well forget it – I’m never going to be pain free, and even a reduction in pain or a reduction in the amount of increase in pain over time is too much to hope for. Trying a new doctor has been a complete waste of time, and used up even more of my ever dwindling bag of hope. It’s times like this I wonder how much more of this pain I can stand before I just have to end it all.

Meanwhile, I took some drug that he wanted me to try last night, and woke up feeling sleepy, mildly nauseated and headachy. The PA referred to it as a “hangover”, I assume in a medical sense just meaning a side effect that carries on the next day, but that’s exactly what it felt like, like I’d tied one on last night. And after the 3.5 hour doctor’s appointment (plug half an hour travel time each way) made me two hours late for lunch, I was really feeling sick. I was seriously considering just going home and lying down on the bed and crying for the rest of the day. But instead I grabbed some lunch, and after a few hours I can almost look at a computer screen without feeling like I’m going to barf. I still feel like crying.

[1] Wikipedia says “chondromalacia” isn’t a diagnosis, just a description of the pain. Big fucking deal – it also says the usual treatment is anti-inflammatories, physiotherapy, and “treatment of any underlying cause of the pain”. Well, since nobody has ever discovered the underlying cause of the pain, after X-Rays, MRIs, and arthroscopic surgery, that comes back to the same treatment plan that’s been tried and failed a dozen times already.

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.