The Wait

Monday, April 5: I see my internist (Kirk) for my yearly physical and tell him about the sunburn-like pain in my lower leg bones. He thinks it’s the early stage of a rare and devastating disease called CRPS (chronic regional pain syndrome), and orders a bone scan. I know someone with CRPS, and have often comforted myself with the thought that, as bad off as I am, at least I don’t have THAT. I learn from the Internet that the disease is progressive and incurable in the absence of early treatment or spontaneous remission. I also read:

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”

Deborah M. Shanley
Executive Director
International Research Foundation for RSD/CRPS

I’m scared shitless.

Thursday, April 8: The bone scan people haven’t called to schedule an appointment, so I call Kirk’s office. Trinity tells me that the paperwork is in process.

Friday, April 9: I call again, and again Trinity tells me that the paperwork is in process. I ask to speak to whoever is handling “the paperwork,” and I get Casey’s voice mail. I leave a message, but she never calls back.

Monday April 12: Trinity tells me the same thing, so again I ask to speak to Casey. I leave a second message on her voice mail. Becky calls back, and repeats the line about paperwork in process. When I ask “what paperwork?” she says Kirk’s signature. “When will he sign it?” I ask. She says she doesn’t know, that Casey is in charge.

Tuesday April 13: I call a fourth time and am told the same thing.

Wednesday April 14: I set my alarm so I can be there when Kirk’s receptionist opens the door at 7:00. I hand her a letter marked “please deliver immediately.” In it, I remind Kirk that this is a very serious disease, that treatment within the first three months is vital, and that my symptoms appeared two months ago. When I don’t hear anything by noon, I call the bone scan office and make an un-referred appointment for the next afternoon, which I anticipate having to pay for myself.

That night, I read on the Internet that a special kind of bone scan (called a triphasic) is the diagnostic test of choice, but my appointment is for a Dexascan, which is the only kind I knew existed. I call Kirk’s office the next morning to ask what kind he ordered. Becky says he ordered a Dexascan. I ask if she is certain, and she says yes. “Why has it taken so long for an urgent referral to go through that I had to order my own test?” I ask. She says that Kirk didn’t mark it as urgent and implies that, as a result, all my efforts to speed things along were wasted. The pain has now spread into my thighs.

Thursday, April 15: I get my Dexascan, and learn from the technician that it is almost certainly the wrong test. I anticipate changing doctors, but I’ve been with Kirk fifteen years and have always considered him a caring doctor and an excellent diagnostician, albeit one with a sometimes difficult staff. Also, it’s a sorry-ass time to start with someone else, so I make an appointment to see him the next day.

Friday, April 16: I ask Kirk if he got my letter. He says he didn’t, so I tell him that I gave it to the receptionist who, as I had since learned, gave it to Becky who gave it to Casey. He apologizes repeatedly and effusively, promises that such a thing will never happen again, and goes looking for the letter. Casey has it.

He reads the letter in my presence, and notices that Casey had me down for the wrong test. I WAS supposed to get a triphasic scan. I ask how soon he can arrange the test, and he says he will shoot for Monday. He calls the nuclear imaging department at the hospital, and they tell him that I will have to wait until late next week at the earliest because the radioactive isotopes used for the test have to be ordered fresh from Iceland. I ask him if I can get it done sooner at Oregon Health Sciences University in Portland. He says no, that they would still have to order the isotopes fresh.

I point out that the isotope test is inaccurate 55% of the time, and suggest that he go ahead and start treatment based upon his tentative but confident diagnosis. He says the treatment might foul up the test results. He also disputes the idea that there exists a three-month window.

I tell him that I got my physical therapist to send a referral to a pain management specialist since I anticipated an anesthesiologist or a neurologist overseeing my CRPS treatment anyway, and that I had already made an appointment. He approves of the clinic to which my physical therapist referred me.

I say that I would prefer a disease that would kill me to one that might force me to kill myself. He advises that I not focus on the worse-case scenario.

Eleven days after I first saw Kirk, the wait for the right bone scan begins again.

Aussie women do it like dingoes

The following is a quote I included in my last post regarding my sorry situation. Following it are questions from my readers, which I have ever so thoughtfully answered.

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”

Reader one wants to know: Which of these things are you looking forward to most?

My response: I’ve always heard that there are no dumb questions, but you’re skirting the cliff edge. You might as well ask kids at a birthday party to choose between cake and ice cream.

Reader two asks: How will we be able to tell when you develop psychiatric problems—you already act pretty weird?

My response: If you’re normal, and you go crazy, people can tell it pretty easily. If you’re crazy and you go crazy, the two crazies cancel one another out, and you become normal. But, if you add another crazy to the two you already have, you’re back to where you started.

Reader three is wondering: It says you become a druggie, and then you become completely incapacitated. Do the drugs make you incapacitated, or does the pain make you incapacitated?

My response: The pain makes you roll around on the floor and scream a lot. The drugs knock you on your bum so that you don’t move or make a sound. Either way, you’re not going to be out training for the Olympics.

Reader four: Are you going to commit suicide now or wait a few days?

I’m not going to do it for quite some time. Instead of focusing on how much I hurt, I’m going to focus on booze, cigars, dark chocolate, and cream-filled donuts—all at the same time. I’ve indulged in these things all too little, and I’ll be making up for lost time.

Reader one again: Do you think you’ll die recanting your infidelity and begging Jesus to forgive you like most stupid atheists?

I don’t think so unless I’m running a really high fever on a really hot day, and the air conditioner breaks. In such a situation, I might think my feet are hanging over “the lake of fire that burns forever and ever,” and start recanting. Of course, if I come to my senses in the midst of recanting, I would naturally have to de-recant. Then if I became delirious all over again, I would probably re-de-recant. By the time I finally died, even Jesus wouldn’t know where I was supposed to end up.

Reader five: Have you heard the rumors that having sex with a different woman everyday for only a month (six at most) will bring about a complete remission?

Yes, I started them. Women are forever telling me how much they want to help and how badly they feel because they can’t help, so this was my way of cheering them up. Then I remembered my lesbian and male friends, so I started another rumor to the effect that large gifts of money would cause a remission. So far, I haven’t gotten my first screw or my first dollar, and I’m starting to think that my friends didn’t really mean what they said. I’m really bummed about this, especially in the case of Australian women who are said to screw like dingoes. I’ve seen dingoes screw, and they’re even more athletic than Arctic Foxes (Canucks) or coyotes (Yanks). Of course, given my condition, maybe an old and arthritic daschund would be about all I could safely handle.

Reader six: Do you think that maybe the woman who wrote that thing at the top of the page was maybe just funning people—like for a really bad April Fool’s joke or something?

Well, you never know. I always thought World War II was an April Fool’s joke that went a little overboard, so it’s certainly possible.

Reader two again: Have you considered giving up your constant bitching and whining, and trying to be an inspiration and a role model to other sufferers and to the world at large?

I hadn’t thought about it—is there money to be made for that sort of thing, or a Nobel Prize even? Since it would be hard for me to work at an ordinary job, being brave for money might be a great career move. I could even be on reality TV, where I would grimace a lot so people would know I was in horrible pain, but then I would smile through the grimace so they would know I was bearing up bravely. I could also say soul-wrenching things like:

“Take it from one who is dying, one who’s only remaining dream is that you might learn from my misery and suffering so that you will be better able to enjoy the kind of rich and rewarding life that I’m getting screwed out of for no good reason. So, my friends, here are today’s words to live by: Don’t forget to turn the compost every few weeks if you think of it, and be sure to give the dog extra water on hot days unless you’re too busy getting drunk. That’s all for today, but I’ll be back tomorrow, if I’m still alive. Until then, keep remembering that you’ve got youth, health, looks, and money, and all I’ve got is old age and misery, so I hope you’re awfully, awfully, awfully happy.”

Things could be worse—I could be in the end stage of this disease.

I study the causes of pain because after two shoulder surgeries in one year, my pain is far worse than it was—and spreading—and my surgeon doesn’t know why. During my studies, I have occasionally come across RSD/CRPS (Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome). I’ve found strange comfort in its nightmarish nature because when my own hurting was at its worst, I could always tell myself, “I might be bad-off, but at least I don’t have that.”

Well, it looks like I do. At least, my internist thinks so. Usually talkative, he articulated the dreaded acronym and walked out without another word. I have no idea what he was thinking. I'm now awaiting a bone scan.

“At an advanced stage of the illness, all patients develop significant psychiatric problems and narcotic dependency, and are left completely incapacitated. Some commit suicide.”
Deborah M. Shanley
Executive Director
International Research Foundation for RSD/CRPS

I don’t see suicide in my future, although I think about it all the time—you might even say I’m obsessed with it. I don’t even see narcotics in my future unless my doctors can give me something that works a whole lot better than Demerol, Dilaudid, Percocet, Vicodin, and Norco, none of which helps enough to justify the side-effects.

But what DO I see in my future? Sometimes, the most cheering thought that I can come up with is that I’ll probably be dead in another couple of decades if I can but hang in there. It’s not a sunshine and lollipops sort of thought certainly, except in a “jump off a skyscraper to avoid being burned to death” kind of way.

So far at least, the pain is not so overwhelming, but what I can often enjoy my time with Peggy, and nothing means more than that. I get support from two places—her and my fellow bloggers. A few local friends try to be helpful, but they truly don’t have a clue, and when we’re together, it’s ever in my mind that I still look healthy. If I were they, I might very well be saying to myself that, surely, the problem just can’t be THAT bad.

Does the US deserve to survive?

The question arose as I wondered if America could do its part to win another war like WWII. Well, no. Then, we were lean and Depression hardened. Now, we’re waddling diabetics with telephone earrings. Then, we were physical laborers. Now, we’re clerks and service representatives. Then, we could convert heavy industry to making the weapons of war. Now, we have little heavy industry to convert. As the realization of our inadequacies came to me, the question changed from whether we could survive another such war to whether we would deserve to survive.

Americans commonly describe their nation as “number one,” “favored by God,” “leader of the free world,” and “greatest nation on earth.” All this is, of course, true. No nation comes close to us in conspicuous consumption, and no nation can match us in waste (many a Third World family would be the envy of their neighbors if they were allowed to clean out just one of our dormitory dumpsters at the end of the school year). We’re also the fattest nation on the face of the whole entire worldwide world—yay! What’s more, American ingenuity enables us to lead every other developed nation in poor health while also leading them in the cost of health care! Beat that, you smart alecky foreigners.

Then, of course, there is the matter of our moral authority. YES, we lead the world in that too. That’s why our secretary of state is constantly having to travel around the globe to chide other countries for their ethical shortcomings. Oh, I almost forgot bankruptcies caused by medical bills—yet again, we’re number one. Gratuitously violent films? “USA! USA!” Church attendance? But, of course, we’re the leaders, at least of the developed world. That’s where we get our moral authority, and that’s why we’re “favored by God,” and you’re not.

“Ah, ha,” you say. “How about torturing prisoners or at least locking them up without a trial and throwing away the key? You don’t lead the world in that.” Well, no, not if you compare us to the whole world, but our last president was making great strides in that direction until another guy took his job. However, we do lead the world in the percentage of our population that is behind bars—prison maintenance and construction stocks are major traders on Wall Street. And don’t forget that we’ve started two completely unnecessary wars in just eight years, and that George Bush even intimidated a few other countries into joining us with his post 9/11 threat: “…it’s going to be important for nations to know they will be held accountable for inactivity. You’re either with us or against us.”

Talk about leadership—what other world leader can compete with that? And if our presidents weren’t effective enough all on their own, our Congresscritters would fill the gap. Even though they are unwilling to provide government healthcare benefits to any but the poorest of their fellow Americans, they themselves enjoy premium benefits for life after serving a single two-year term.

We might very well lead the world in other ways too, but we don’t brag about them because we also lead the world in modesty. For instance, we spend tons of money on scientific research, and then tell everyone what we found out for free. And despite the fact that our educational standards drop lower every year, we still lead the world in the number of foreign students who attend our universities. And even if we don’t have the world’s highest standard of living for our average citizen, we still do pretty good; after all, thanks to government subsidized Big Macs, the poorest Americans are the fattest Americans. In fact, if every poor American were able to donate 20 pounds (9 kilograms) of his body fat to starving foreigners, there would be no starving foreigners, and most poor Americans could easily donate more than that, many of them 250 pounds (113 kilograms) more than that.

We also give a lot of money to you foreigners (although it’s rather oddly distributed, some might say), and it’s not money we actually have either; it’s money we borrow from China. We now owe so much to China, and they now own so much of us, that they don’t dare nuke us, so at least we don’t have to worry about that anymore. If we didn’t give so much to you guys, and if you didn’t force us into all these stupid wars, and if our government wasn’t bought and paid for by the super rich, we might be able to pay our medical bills, or at least fill our potholes.

So, would we deserve to triumph in another WWII? What do you think?

Footnote: When I wrote that Big Macs are government subsidized, I meant indirectly. Because my country’s minimum wage is not enough to live on, and because McDonalds—and many other companies—doesn’t provide health insurance to its rank and file workers, the government has to support these people. This enables such companies to sell their products far below the actual cost of producing them.