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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It’s not the kind of vindication I wanted.

Some of us go through life deluding ourselves that our experiences are wholly unique. We experience an accident or fall victim to illness and we believe we are alone. We are not alone, but we don’t know it. Maybe it’s because we’re unique among our peers, where our physical and mental injuries are concerned. The internet makes the world a little smaller but it doesn’t necessarily change the way we feel about ourselves, or how others feel about us.

Cheryl is often tired. I don’t deny it. She has a hard job and she doesn’t stop when she gets home. Still, as much as I love her, I don’t think she really understood how tired I am. All the time. A persistent state of exhaustion.

I knew from a sleep study I did several years ago that I suffered from abnormally frequent limb movements in my sleep, but the quality of my sleep got progressively worse. I’ve danced around the issue for a couple years, taking half measures with this doctor or that, but earlier this year I reached my breaking point. My doctor referred me to a wonderful pulmonologist specializing in sleep medicine. The first thing she wanted to do was go over the data from my last sleep test. She said she didn’t trust the folks who often interpret the data – she likes to draw her own conclusions. Then she wanted me to have another sleep test.

That was last night.

I’m normally tired, but a short, bad night of sleep with more wires than a late 80s sedan and tubes up my nose is not a recipe for a good mood. However, even with all those distractions, I felt like I slept a little better than usual. It would have been great if it lasted more than four hours.

I was surprised when my doctor called me this afternoon with the results. The tech said it would be a week or two. The good news is I don’t have sleep apnea, so I don’t have to wear one of those God awful looking masks plugged in to a cpap machine. The not so good news is my limbs still move around a lot, though that’s not exactly news. I also snore a lot – as in all night. That’s not exactly news either. My wife sleeps MUCH better when I retreat to the other room to sleep on my g-g-grandfather’s bed. The bad news is the quality of my sleep has gotten worse. According to my doctor, a guy my age should spend somewhere in the ballpark of half the night in deep sleep or REM sleep. I spend a whopping 2-3 percent.

And here’s the best part: it’s probably all in my head – or the drugs I put there. The drugs that help quell the dark beast of depression can also be responsible for a decrease in deep sleep and REM sleep. Then again poor sleep can lead to depression.

Chicken, meet your egg.

Wether it can result in such a stunning drop is another question, but it’s a conversation I’m about to have with another doctor – next week in fact.

In the mean time, I really freaking tired. Napping half the day didn’t do the trick, so it’s time to go back to bed and get my 2-3 percent. It feels like it’s better than nothing – if only marginally.


He laughed

Do want to hear something funny?

Who doesn’t, that’s what I wanna know?

It’s not human.

It’s un-frigging-American!

But enough already. It seems I may have heart disease.

Did you bust your gut? Maybe blow a few rivets? You gotta hand it to my body. It’s a regular… well… some comedian who’s really funny.

There are five-year-olds who deal with worse better than I do with less. That said, I thought it would be cool to run through my medical menu of malady.

I’m 39. I take medication to (somewhat) control depression. I have a sleep disorder which keeps me from getting a full, good night’s sleep – ever. I have leukemia. I have a recurring problem with my neck, which may or may not have something to do with my inability to walk or stand more than ten minutes before my lower back goes Old Testament on me. (Wherein God invents the disproportionate response.) I have allergies which keep my sinuses perpetually closed for business. Something called anaphylaxis happens when I try to take allergy shots. I thought I had a bad case of heartburn / reflux. I still might.

The other day I went to my doctor with heartburn and left with a possible case of heart disease and strict instructions to go to the ER the next time I have “an episode like that again.” I’m supposed to have a stress test and an echocardiogram scheduled as soon as possible.

I gave the classic, schizophrenic response to all this by laughing. It wasn’t a rip-roaring belly ache, so it wasn’t enough to be committed, but it was a robust chuckle that came up smooth and finished with a hint of strawberries. I had strawberry yogurt for lunch and did not brush my teeth.

The next thing I know I’m at the drug store buying baby aspirin – when everyone knows babies don’t take aspirin – EVER. I laughed again.

So, where do I find this baby aspirin that babies don’t take? Surely they don’t like the odds of putting it on the pediatric aisle. It turned out I couldn’t even find the pain relief aisle. I laughed again.

I spent five minutes trying to figure out if “baby” aspirin and “low dose” aspirin were the same thing. They didn’t have any baby aspirin, but they had lots of this low dose stuff. I laughed again.

Cheryl worked out the logistics of a late night ER run. Adam told me he was worried about me going to the hospital. I replied, “If anyone was going to be nervous it would be me right? Do I look nervous? I’m not worried Adam so you don’t have to be either.”

I didn’t laugh. I think it might be the first time I thought lying to my kid was the right thing to do.

Now I’m in a funny place, but I don’t mean humorous. It’s like the place I visited in between my first blood test and the infamous bone marrow aspiration and biopsy. Now that I mention it, I can’t wait to get me one of those again! This is a little different though. I think there’s a slightly lower chance this will turn out to be the worst case scenario, but in the mean time – by it’s nature – is more likely to kill me while I sleep.

That’s a bit dramatic, but it’s in my head and there’s no getting it out.

So once again I wait in limbo. I’m pacing between the initial screening that doesn’t look good and the definitive test. It turns out “as soon as possible” is March third.