Maybe it’s better I didn’t know

Who knows what kind of anxiety I could have built up if I’d known.

Until Friday I had an umbilical hernia. I preferred this name to the more common “belly-button hernia.” Until Friday night I thought the surgery to repair it would be nothing – no more harmful than its silly sounding common name.

I have a couple days under my belt now, and holy shit on a popsicle stick, it wasn’t nothing! It felt like my poor navel coughed up a large fruit. There was a constant, off the charts sharp pain in my gut, and it wasn’t in the same galaxy as the feeling that followed any movement. It took my breath away. In fact, the rise and fall of my stomach during the act of breathing was enough. (It’s better now but I’ll get to that.)

Cheryl and I developed a close relationship with the doctor-on-call over the last few days. There’s been a few cases of miscommunication, a few conversations with health insurance reps, a couple run-ins with a pharmacist who thinks I’m a doctor shopping drug addict, and a fall back to meds I had left over from neck surgery. In fact, I’d like to go to the pharmacy and throw my half-full bottle of oxycodone at the judgmental prick. I won’t because I’d like to keep my criminal record clean. I can’t because it’s the only thing I have that’ll touch the pain. It would be funny if I didn’t feel angry, frustrated, ashamed, stigmatized and depressed. The script the pharmacy wouldn’t fill was less potent than the oxycodone I had left over from neck surgery. In fact, I only had the stuff because I’d long ago asked my first surgeon (from the neck surgery in February) for a less potent script so I could try to start weening off the pain meds altogether.

Before you say anything, I recognize there are lots of folks who shop for doctors to get scripts for medication they don’t really need. I get it. We live in a world where people do bad things. But I’ll be damned if I’m going to treated like a criminal until I can prove otherwise. Hell, Cheryl criticizes me because I don’t sell my discomfort, usually resulting in under-treatment of symptoms. The only reason I had this lovely chat with the folks at CVS is because I turned down a script after the surgery, and Cheryl called my (hernia) surgeon after I spent a night and half the next day curled in a whimpering ball. (I was thinking the discomfort would be nothing compared to my last surgery, and the weened down meds I’d been taking for my neck would be plenty. Yes, I’m THAT stupid.)

Now it’s late, I’m tired, and even in my current medicated state/fog, sitting here really hurts. I’ve got one thing left I want to say.

If you’re offended by foul language stop reading now and turn away.

Fuck you, CVS.


My Medical Riff

Sit back and enjoy a good old fashioned rant, boys and girls. Don’t sit too close though. There could be some spittle involved – unintentional, of course.

I’m not going to review my medical history with you now. You’ve either been reading along and know it already, or you haven’t. Maybe you’ll get the basic idea – or not. I’m really not sorry.

The other day I hit a wall. I wasn’t walking or driving so no physical harm done, though after paragraph two maybe you figure I got it coming. It was the metaphorical wall, the one you hit when you’re beyond the normal kind of tired.

It’s when your body cries, “no mas!” even as your mind replies, “what the hell does that mean? We’re a dumb American, uni-lingual you fool!”

Whew! Look at all the hostility fly off the screen. I told you this could be a hum-dinger.

It was 11:00 am on Wednesday after the long Memorial Day weekend – a weekend I had just gotten a LOT of sleep. Cheryl and the kids had left the previous Thursday for the long weekend in Orlando, and I was supposed to meet them Saturday morning. I never made it. A combination of a cold and fatigue kept me in bed.

So resting most of a quiet, long weekend, and working one routine day at work, I should be pretty fresh right? Nope, there was the encounter with the wall, remember? So my addled, exhausted mind tried to run down the possible causes. Thinking about it, I felt like I’d been feeling more drained over the last month or so, but I’d been associating it with my sleep disorder – though it hadn’t changed (to my knowledge).

So what had changed?

Besides the cold, which could only explain one weekend, there was only one thing I could think of: the increased dose of meds my neurologist was giving me to manage headaches. Just for kicks I checked online to see its common side effects. Low and behold, there they were: fatigue, difficulty concentrating, and memory problems (though, all of which could be explained by fatigue).

I decided the wall wasn’t someplace I’d like to live full time, so I called my neurologist’s office to share my concerns. I called first thing in the morning and stuck it out for the legally mandated eight hour wait period for a call back. When I spoke to the nurse I laid it out for her much as I did for you – the last part anyway. I told her how I thought it might be this drug because it was the only thing I could think of that had changed in the last few months. We spoke a little longer. By we I mostly mean me. She had the classic, overworked, “I’m thinking about five other things right now,” dead silence thing going for her. I was interrupted by the occasional blurted question, which she’d have to repeat. The first half overlapped something I’d said.

We had a great rapport going.

Her last question almost did something I thought was impossible. It almost cured me of my fatigue. Almost.

“I see you’re taking a lot of medication, all of it I’m sure is necessary. But what makes you think THIS ONE is making you feel tired?”





Cheryl doesn’t like it when I swear on the blog. I don’t swear an awful lot in real life, but I do have a temper that’s rare but nasty. This is one of those times when I’d like to lay it down thick enough to make Richard Pryor blush. But I’m not. Well, not a whole lot anyway. Time has passed. I’ve cooled down a bit. Anyway, back to the post.

Contrary to what you might think, I didn’t want to jump through the phone, even if it was physically possible. I didn’t have the energy. Would I fall through the phone with a big assist from good ‘ole gravity? Absolutely. Maybe I was reading to much into it, but her question almost felt like a work of art, with so much condescension dismissiveness packed into so few words. I was stuck somewhere between awe and my brain blowing its cap and incinerating everything in its path.

“Um, you heard me when I said everything else has been the same, right? When I said that I meant for months. I’ve been taking all of those other medications for quite some time without any notable side effects. Again, the only difference I can think of is THIS medication.” And yes, nurse whoever the frack you are. Several of my specialists do seem to think I need to be taking the medication I’m taking. Are they perfect, or even necessarily correct? Maybe not. But how about you lay off the fucking judging until you get your medical license and read up on my full medical history, instead of this three minute multi-tasking act you’ve got going here?

“Well,” skeptically, “you could try reducing the dose again and see if it makes a difference.”

Fuck you very much. That’s what I thought anyway, I just wanted to make sure. “Thanks, I’ll give that a try.”


Losing my words

Have you ever lost a word? Most of us have. Do you know what Dysnomia is? I did, but I had to look it up to make sure. Don’t be too impressed though. It was kind of my area of study in school, and we’re talking recognition memory all the way here. I couldn’t recall it to save my temporal lobes.

Well, A few weeks ago I started misplacing words everywhere I went, and it was pretty damn hard to write. This is the story of how it came to pass. Eventually I’ll even tell you what the hell Disnomia is if you didn’t already know, hadn’t figured it out, or have the patience to hang around that long.

Before I get to far, this isn’t intentionally a pity poor ‘ole me post. I consider myself and my experiences pretty darn average, with only a couple exceptions. So why write it at all, you may ask? Why blog? Think of it as another small piece of me.

Now venting is another matter. No pity is required for catharsis.

I’ve had headaches all of my life – or as long as I can remember. When I was a kid I didn’t tell anyone, assuming people dealt with headaches all the time. Headaches seemed mainstream. I heard my parents talk about them. I saw all the commercials on TV for “Extra Strength Tylenol,” and Exedrin – dramatic interpretations of the pain included. So I dealt with my headaches the way I dealt with most other things in my life: quietly and internally. When they got bad my temper got worse and the quiet kid became the Grade-A Ass.

I was like a lot of people that way. I got a headache once or twice a week, I got grumpy, and I got over it. No one fretted over what was wrong. I didn’t go on a US tour of medical specialties. I saved that for later in life. I was just another kid/teen/man with the occasional bad temper, and didn’t like to talk about it.

In 2007 I think something changed. I know something happened, but I think it changed something: body chemistry, general emotional state… something. My doctors humored me when I offered my hypothesis, with the trademark medical shrug: “There are a lot of things we don’t understand….” Loosely translated: “Nice try, but leave the wild-ass guessing to the professionals.

If you know me, or if you’ve been around for a while, you know 2007 was the year of my leukemia diagnosis and chemotherapy. It was also when my headaches started coming more frequently, enough that I started talking to my doctor about them, and taking something stronger for them.

A year ago (maybe 18 months) they started interfering with work. Not a lot, but it was enough to keep me short on leave hours. A couple months ago it seemed like they stopped going away. Coincidentally (or not) a couple of months ago I found out the leukemia may be back.

Wait a minute?!? I know what you’re thinking. Stress and depression as a trigger for headaches? Quick! Someone call The New England Journal of Medicine!

A few weeks ago my team of doctors decided they were done shooting blanks at my head, so I was off to see a neurologist. He asked a lot of questions and I gave a lot of answers. He concluded I was having a lot of headaches and prescribed a few new drugs.

Thank the good Lord I went to see a Neurologist when I did! I mean, who knows how long I might have gone without another prescription?

Anyway, this leads me to the reason I’m writing now, and why I wasn’t writing before. One of the fabulous new drugs can cause a variety of side-effects, including the ominous sounding “cognitive deficiencies,” which happens to include Dysnomia.

Dysnomia is just like having a word on the tip of your tongue, just out of your brain’s reach – only more often than normal. Imagine how hard it would be to write if this happened every paragraph or so.

It was really pretty strange – freaky strange. Normally I don’t want my doctors to tell me the potential harmful side effects of a drug. I’m just fine with the standard: report anything odd. For someone with an advanced form of hypochondria, psychosomatic is more than just a word – it’s a lifestyle. But in this one case I was glad they did. It started shortly after I started. I had trouble completing sentences at the dinner table. I couldn’t write. I hid behind a pair of headphones at work and tried not to speak much.

… and if I hadn’t known it it might happen – and likely resolve itself pretty quickly – I might have had a nervous breakdown. Strike that. I KNOW I would’ve had a doozy.

Instead, I had a pretty good time with it (other than at work). I’m not someone who NEEDS to write every day, or even necessarily every week if I don’t feel the spirit move me – and I didn’t – so I was ok on that front. As for my mind failing me at odd moments… I suppose I could have… perhaps even should have been really frustrated. Instead I thought it was kind of funny. Maybe this was a sign of another, more serious problem, right? I mean, what’s so funny about brain malfunction?

I’ll tell you.

It’s the same reason I found parts of my chemotherapy/hospital stay back in 2007 sort of entertaining. Back then it was the aching bones, the sore and swollen joints. I felt like an old person, or imagined I did… getting the jump on how I might feel in years to come (barring certain advances in medical technology) – and finding it funny – a new experience to be savored not suffered. Though not exactly the same, there was the day sometime later when my wife said she wouldn’t trade natural childbirth for my experience.

It’s not about the pity. It’s not about some twisted competition… who’s suffered more. It’s that I’ve surprised myself. I perceive myself as dark, brooding, and self pitying. But back in 2007 when something really was bad, and not just my imagination or a trumped up charge, something inside flipped a switch. I could cope. I was stronger than I thought I could be – at least part of the time anyway.

Depression, headaches and the prospect of leukemia’s return have me down. I won’t lie to you. But don’t feel bad for me. I may lose a few things along the way, but I seem to have a knack for picking up a few things too.


Medicated me

This is how medicine works for me.

Last month (around the time I was living in the attic) I found a treatment that seemed to work. In this case I slept… all night… really well. The next day I felt great, except for a nagging ache in my right shoulder and tingling feeling radiating down my arm into my hand (like it went to sleep). I called my doctor’s office and they said, “you need to stop taking (that drug) immediately.”

According to The AMA Guide to Liability Mitigation, Twenty-Eighth Edition (Revised), this phrase is reserved for those circumstances when potential liability is greater than $999,999.

Sure enough (according to a thorough review of the internets), in extremely rare cases the drug can lead to sudden coma and death. Although the symptoms leading those poor, rare exceptions down life’s off-ramp didn’t exactly match mine (did I mention the extremely rare part?), try telling that to a hypochondriac. I needed medication to deal with the anxiety caused by a vivid imagination for poor prognosis.

It occurred to me the tingling could have been from sleeping soundly yet awkwardly, twisting and pinching tissues that would rather not be pinched – or twisted for that matter. Now two sets of doctors agree – on one hand proving my keen intellect and medical instincts, but also making it harder to ignore my inner hypochondriac. As a bonus, one doc says I may be developing a pinch of carpal tunnel syndrome.

Setting aside two Doctor’s reassurances (a degree, no matter how well deserved, is no match for irrational fear), we arrive at a hypochondriac’s dilemma: do I risk near certain death for a good night’s sleep? There are so many things left in life I want to accomplish. I want to finally buy a new pair of shoes for work. I want to follow through on growing a beard. I want to be the first man to swim across the Straits of Florida naked, while confirming the south Florida legend that a 24 hour marinade in alligator urine is an effective shark repellant.

It’s very likely the only thing standing between me and a good night’s sleep is fear, and it’s killing me. Not literally, mind you… I think you’ve got the gist.

1 Comment

Soma relief

I’m not sure where I heard this, but Disney supposedly inflates the estimated wait times on their amusement park rides. Makes sense, right? I’ll bet leads to fewer disappointments.

The day of Cheryl’s surgery, I remember the doctor saying her pain should start feeling better by the following Monday. As I’ve mentioned before, it didn’t. In fact it got a little worse.

Cheryl had her first, post-op follow-up with the doc yesterday, where it was revealed it’s not unusual for the pain to go a couple weeks. They apparently don’t become concerned unless the pain isn’t getting better after three (weeks).

Me thinks they should have said that in the first place.

Whip out your Webster’s doc. Look up trust.

The better drugs arrived at the pharmacy today, so that’s something.