What would Jesus call it?

We see doctors for diagnosis and treatment. We may not like or agree with the diagnosis, but that’s why doctors hate the Internet.

In today’s post we’ll be discussing the trouble with names. No, we won’t be discussing doctors’ names or the ones we’d like to call them. It’ll be something else – something wonderful.

Just wait. You’ll see.

I saw my doctor a while back to follow up on my thyroid problem. You may recall my doctor found low levels thyroid hormone in my blood a few months ago. It was a eureka moment. It was FINALLY something to explain my constant exhaustion, and it was easy to treat. It was like going to bed in the heat of August and waking up on a white Christmas morning – THEN – finding out Santa brought you that vacation cabin in the mountains you always wanted. But my energy level collapsed again after early encouraging signs.

(And I was a bit pissed at Santa because I didn’t know how the hell I was going to get that cabin out of my family room.)

I was hoping my hormone levels adapted to the medication and another quick fix was around the corner – a higher dose of medication. But sometimes you can hope, wish, pray, perform ritual dances, AND give up your favorite pair of blue jeans for Lent, and you still don’t get what you want. My hormone levels were just fine… almost too fine, even if I was not.

Don’t knock the jeans before you’ve seen them. They’re one of those rare pieces of clothing that make my ass look fantastic.

It was one more thing successfully treated, and one more day I didn’t feel much better. We decided I’d continue taking the medication. Adding one more to the list probably wouldn’t kill me. It hadn’t yet, and it was cheap so it wouldn’t hasten our financial ruin. I figured I was better off with a normal amount of thyroid hormone in my blood, even if its absence wasn’t the only cause of my problems.

But what was next? My blood was as normal as it’s going to get. I’ve followed up with several specialists until there was no point to follow up anymore. I’ve consistently followed most of the advice gleaned from those visits. My diet was better than it’s ever been. My exercise habits were returning, despite a brief relapse while the family was in D.C. For a few minutes, sitting in my Doctor’s office listening to test results I suddenly didn’t care about, I felt like I was back to square one.

What was next?

I’ll tell you what was next: a name… a label.

It’s not a bad label. No one is slandering my good name – in this context anyway. The problem is it’s an empty name. It’s a label without a cause.

Chronic Fatigue Syndrome.

As names go, there isn’t much to like about this one. For all practical purposes (as far as I know), the name sums up everything “we” know about it. Of course, the history of medicine is littered with descriptive names, but in the past they had the decency to use a dead language to do the naming.

Back when literacy rates were low, Latin might as well have been a forbidden language of the gods. To this day it makes certain things sound important… scientific.

Back when test scores in science and math trailed most of the developed world (but before ignorance became virtue), “science” was something of an unquestioned authority (outside the bible-belt). When Science “… decrees you have bronchitis. Go forth and rest with confidence knowing you are not imagining things… you really are sick,” that was that. You laid down, took your medicine, and shut up.

But what if I said you just had inflamed airways? It’s not quite as persuasive is it? Which script do you think you would most likely fill (and pay for): bronchitis or inflamed airways?

Those of you familiar with the language of our beloved Romans, or the health related sciences, need not answer.

I feel a little better knowing the medical community threw me a bone with “chronic” and “syndrome.” A syndrome sounds like a stranger passing you on the street at night – the kind that tickles the fight/flight reflex. “Chronic” is synonymous with lingering and long term, probably because that’s what it actually means, neither of which are desirable when a syndrome is looming.

But “fatigue?” Really? You medicos couldn’t come up with something more credible than fatigue? You do realize that in the eyes of the public, you’ve just given me a hang-nail, don’t you? If you can’t come up with a decent, scary English name, or something Latin, at least name it after someone. Let me throw a couple examples at you to illustrate my frustration.

– – –

Hey boss, I need to leave early today.


Well, I feel like Chronic Fatigue Syndrome is catching up with me today.

Yeah, sure. Nice try. Now go back to work. Go on, I don’t want to have to write a Coaching Memo for your file.

– – –

See what I mean?

Now let’s try an alternative, starting with a Name.

– – –

… Well, my doctor says I’ve got Bellew-Kauffman Syndrome and I really feel like crap today.

Get the stink out of a damp dog! John, that doesn’t sound good. What is “Belloo-Caughing Syndrome?”

Well, actually it’s pronounced like “bell-you…” oh, never mind. It’s this condition where….
So the bottom line is I feel exhausted.

Jumping Jehosaphat, John! I’m sorry to hear it. By all means, please go. If there’s anything at all I can do for you, please ask. We were all going to get together and watch some ultimate fighting at lunch, but we’ll say a prayer for you afterwards.

– – –

See what I mean? I give you proof it’s all about the name. I have it on good authority it would go down just like that.

Whoa there tiger! Hold on Dr John, MD.

It turns out one of my doctors did have a suggestion – a next step.

She said I should go see a Rheumatologist.

A Rheumatologist? What does Rheumatology have to do with Chronic Fatigue Syndrome?

I’m going to have to consult the internets.

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Brain a buzz

A friend of mine likes to talk about “the karma truck” and it’s chances of running you over. I’ve pointed out that talking about it probably doesn’t help his chances, but some people just can’t be helped.

I wrote the last entry two weeks ago but I wasn’t going to post it. I’d shared it with Cheryl though, and she thought it was amusing. (It’s fine to love and lose, but I’d just as soon not precipitate the loss). Still, I didn’t want to offend anyone… mothers making up a large percentage of the reading public, and a fair portion of my audience (such as it is). The equation changed somewhat on Monday when I got clipped by my friend’s karma truck. I figured I might as well post it – if for no other reason than to give this one a little context. Besides, I’ve really enjoyed writing these last two paragraphs. They’re begging me for a raison d’être.

I had my quarterly visit with my oncologist on Monday. Her people drew some blood and ran the numbers, per usual. One number is normally out of range (my lymphocytes), but a couple more numbers were slightly out of range too. Still, my Doctor’s first reaction was, “this looks good.” It’s happened before and it was no big deal then. However, this time she followed it up with the most thorough physical exam since my initial diagnosis; asking me about localized pain, unexplained fevers, and checking all the places blood cells can collect when things go wrong (thumping my spleen and massaging my lymph nodes). I haven’t had any pain or fevers, but my answers seemed to surprise her. It could have been my imagination or deficient social skills, but it seemed like she was expecting a yes or two.

Well, by now I’ve revealed enough of myself and this visit for you to recognize the makings of a panic attack – the paralyzing variety. I’d planned to go back to work afterwards, but it was enough to send me home, take a pill, and chill.

We now return you to my appointment, already in progress.

I can put up a pretty good front as long as speech isn’t required. Not talking is a pretty revealing tell though. She tried to reassure me. “You’re fine,” she said. “I want to do a blood smear just in case, but everything looks great. Oh, and if you do have any unexplained pain or fever, give us a call right away.”

Um… ok. We need to work on our focus when we’re reassuring.

The last time they wanted to check my blood under a microscope it was to check for cell abnormalities – which they found. Oh, and wasn’t there an old revision of an AMA medical dictionary (before they went soft on bedside manner) that defined “right away” as “you better do it right fucking now before you drop dead?”

If I was smart, or I could string two meaningful words together under pressure, I would have asked questions, like: “Why do you want to take a closer look at my blood? Does something concern you? Why are you concerned about these particular symptoms?”

This is the part of the post where I tell you the worst thing that came from my little dance with leukemia two years ago was fear. It’s a scary word and I’m easily frightened.

Even if it did return to active duty, the kind I have is easily treated (relative to other cancers)… and none of this means it’s back. One of my numbers: a type of white blood cell that’s about half of what it should be, could be explained by a simple infection. Plus, the prior fight with my little hairy mutants left me with fewer of those cells to start with. I’m also two years into my remission. The chance of a reoccurrence at this point is quite low. There’s a window between ten and fifteen years where younger people tend to have another go at it, but I’m not there.

Hairy cell leukemia is quite rare already, but it’s even rarer in young people. It’s mostly a senior’s disease. (I never thought I’d be ahead of my time.) Over all relapse rates may be artificially low because patients tend to die of other, natural causes (not precipitated by the leukemia) before it has a chance to come back. However, I’ve been told that since I was so young, there’s a good chance it will eventually come back (unless I pick a fight with a truck in the mean time) but probably not now.

I’ve also been told that even if it does come back, there’s no change in treatment, and no change of prognosis – which is really good. The treatment is easy as chemotherapy goes (though I was an exception, requiring hospitalization – sensing a trend?), and the prognosis is excellent.

I’ve tried to show everything in it’s naturally occurring, good light in this post. I just wish I could make myself believe it. If it makes you feel any better, writing it down helped.

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The new doctor

The effect was fleeting but appreciated. I finally made an appointment to see a new oncologist and she was really nice.

I’m always nervous about seeing a new doctor. They play an important role in life and I’m afraid of getting one I don’t like or trust. The logical thing to do when this happens is switch, but I usually don’t – not for a while anyway. In fact I’ve only switched doctors voluntarily once. Hate is a strong word, so I’ll say I REALLY didn’t like one guy… but I still stuck with him for several years. I’m sure it has something to do with the relative trust in the devil you know versus the one you don’t, not that all my doctors are Satan’s spawn, but my facility for logic is easily lost in the face of fear.

I should say that I really like most of my doctors, and not just because I trust their professional judgement. I like them on a personal level. They’re kind, patient, and caring.

sandspur_sm.jpgMy oncologist was an exception. On some level I liked the guy, but at times he fit my stereotype for the highly educated/paid professional: he was a bit of an arrogant prick. Mind you, I’ll take a competent doctor, even if they have the personality of a sand spur. If it starts to affect my trust then I’d have a problem, but that wasn’t an issue with my old oncologist. Quite the contrary, I trusted him implicitly. I think it’s part of the reason I put off scheduling an appointment with a different doctor when the insurance issues started.

All of these concerns were put to rest this afternoon. I found another kind doctor, someone who seemed to know her stuff – and care about the person behind the symptoms.

I left the office feeling pretty good.

It wasn’t enough to crack depression’s hold for long. I found myself back in the emotional valley soon enough. But, I’ll still take all the good I can get.

Just in case there’s any question, there’s still no sign of cancer in my blood. My doctor’s are confident it’ll be gone for years, and even when it does come back it’ll be easy to treat. It’s not something I was worried about going in, or going forward. I’m odd this way: all worked up over which doctor handles my routine check-ups.


It’s all my fault

You don’t want to read this post. Why am I writing it then?


I have a theory for why I’ve been feeling down lately, and the title to this post is a strong clue. Since it’s apparent no one else is ever at fault for things that go wrong, the logical conclusion is it must be my fault. When everything is your fault and you accept responsibility – even if it’s just a small part of your subconscience doing the accepting – it’s really easy to hate yourself.

Take one guess where this is leading. Did you guess something related to healthcare or insurance?

A month or so ago, Cheryl went to have a procedure done. It required preauthorization from our insurance company (health insurance, if haven’t been keeping score at home). Before they did the procedure, Cheryl asked them if the preauthorization came through, and was told “don’t worry, it’s done.” Cheryl had the procedure done, along with two others under similar circumstances. Then we got a bill. Make that bills.

“So, why did we get a bill? I thought you all were submitting a claim to our health insurance.”

“No, we didn’t.”

“Alright, then submit it now.”

“We can try, but insurance will reject it. They require PREauthorization for this procedure. They won’t authorize payment after the fact. The bottom line is your insurance company won’t pay, and you’re responsible for services insurance doesn’t cover.”

“So you lied to us when you said you had taken care of the preauthorization.”

“No. I said no such thing. In fact, I didn’t even know you had health insurance.”

Brain cells screaming in agony from the abuse of high blood pressure suddenly running through nearby arteries….

“WHAT THE HELL are you talking about? I’ve lopped years off my life bugging you people about which insurance you were supposed to make the claim with, and now youre going to sit their and lie to me, or worse – imply I’m a liar? Check my file and tell me you don’t have a copy of my health insurance card.”

Unappologetically…. “Ah yes, I see we do have it. But you know, it’s your responsibility to see that procedures are preauthorized when it’s required.”

“But you’re supposed to submit the initial request…! (Fists clenched) So you’re telling me it doesn’t matter what you say, we should assume you didn’t do what you told us you’ve done… that we can’t trust anything you say? We should go on the assumption that you’re incompetent, to cover our ass?”

I’m not sure Cheryl really said that last bit, but that was the gist of the conversation. I kind of wish I was on the phone. I think it would have been good for my mental health to say it myself.

But here’s the thing: I know it’s our responsibility to verify those kinds of things with insurance. So all that anger I felt before has done a 180. I’m angry with them for not doing their job, but I’m also angry with myself for being such a rube.

Then there was yesterday. I got a letter from the good people at my health insurance company, saying they were not going to pay for my last visit with my oncologist. Why? He’s not “in the network.”

To truly appretiate this letter you have to understand two things. One: I’ve been seeing this doctor for two years – two years he’s been “in the network.” Two: my last visit was before all of the trouble Cheryl had.

On my last visit I had to meet with a “financial counselor” before seeing the doctor. This was when I found out my oncologist’s practice merged with another company. As the “financial counselor” put it: “the company doesn’t have a contract with your insurance provider to accept new patients, but they’re working with us to ‘grandfather in’ existing patients.”

That was news to the office manager who took my call yesterday, after I opened my letter. She didn’t know who I spoke to (I wish I did) but they had no such agreement with my insurance.

I started to say I’d been a patient for two years without any problems, and it would have been nice to know this before my last visit so I could have planned accordingly, but the nice lady interupted me after I got out the words “two years.”

“You do know you have an HMO, right?”

It’s possible I might have thrown the phone at her if we were sitting in the same room. My what a fucking presumptuous mouth you have. I know how the game works. I know I’m at the mercy of changing provider lists. I accept this trade off.

Mind you, I had this conversation with the doctor’s office after spending ten minutes trying to convince a customer service rep my oncologist had EVER been “in network.”

What I’m having trouble accepting is this evolving trend: I can’t trust a damn thing anyone says. Frankly, I feel betrayed. I trusted my doctor. I trusted his staff. A woman told me to my face that things were taken care of – when they clearly weren’t.

These things happen to everyone. It’s not that big of a deal. But with everything else, it feels like one. Trips to the mailbox feel like they merit hazzard pay. Integers with three digits qualify for an “only.” No one you speak to knows what they’re talking about. Insurance companies find every excuse to question claims. Playing go between for attorneys, insurance companies, doctors, therapists and hospitals becomes a full time job. Being sick or injured is beginning to feel like a secondary problem. I tell myself things could be a lot worse, but I’m a bad listener.

At the end of the day it boils down to me. I should have known better. If you think I’m angry with any of them, I’m twice as angry with myself.

note: I wrote this post a few weeks ago. By the time I finished, the tone didn’t fit my mood. As therapy, it worked. Now I’m hoping posting it will have the same effect.