Category: Wellbeing

My ecumenical crisis

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I hope I don’t offend many of you with this one. As you read it, please know I realize it only takes a few bad apples to sour one’s experience, and I’m trying not to paint with too broad a brush. Like they say in so many movie break-ups, “it’s not you, it’s me.” Unlike the movies, I hope I sound genuine.

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Protestant boy meets good Catholic girl: it’s a classic story repeated through the ages.

Or not, exactly.

Cheryl and I went to church regularly growing up and as young adults, but she went to The Church, while I was raised Lutheran. It was the subject of a serious discussion early in our relationship. I think we both felt we were in it for the long haul, and it was a talk that needed having sooner rather than later. We learned we had similar thoughts about God and religion, and in the end Cheryl left to spend the years with me out in the Protestant wilderness.

Three years ago our blissful time in the wilderness started to come apart, and it was my fault.

It’s been three years since leukemia and I became acquainted. It marked the beginning of the end of my regular church going days, but it wasn’t the only reason. At first it was because my oncologist said I had to stay away from groups of people, after chemotherapy beat the stuffing out of my immune system. No people meant no church. Then it was momentum. Cheryl eventually pushed back, dragging me back for a little while, but then depression struck. I haven’t been back (much) since.

Even though the rest of us weren’t going on Sundays, Beth kept going to confirmation classes.

She’s stubborn that way.

Adam started going to pre-k a year ago at the Catholic School/Church where my in-laws attend Mass. Since I wasn’t going to church, Cheryl decided she’d start going to Mass with her parents. For a list of reasons I don’t have the energy to slog through right now, we decided Adam should stay at the Catholic school beyond pre-k. Then Cheryl joined The Church. She’d been going anyway, and membership came with a tuition discount.

Now she is once again… wait for it… a Catholic in good standing. She’s back in the fold with the One True Church (TM).

We kid because we love.

I like to think of myself as an enlightened guy, but you’ve probably already deduced I’ve got my prejudices like everyone else (though some are bigger or more grotesque than others). I’m not proud to admit it, but Cheryl’s return to The Church is part of the reason I haven’t been back.

The idea of splitting up the family along religious lines on Sundays seems wrong… and yet… I don’t want to go to a Catholic Mass. Some folks think it’s because I don’t understand Catholicism, but it’s really because I do. I grew up Lutheran/Protestant, which probably predisposes me to anti-Catholic bias, but I’m almost sure it’s more than that. I know the Lutheran Church has its problems too, but there are core principles of Catholicism I can’t accept, principles I’m reminded of every time I go to Mass.

Although I’m far from a biblical scholar, I studied various religions in school, under people who didn’t have an axe to grind or a product to sell. I’ve sat through my share of Catholic services. I was even married in one. It’s not a problem born of a lack of familiarity. There are many Catholics in the world who are wonderful people – people I’d be proud to worship with: like my wife, my in-laws, and my son’s old babysitter (who’s become a dear friend of the family). I try to respect their beliefs. I suspect there are more bad Protestants in the world than Catholics. Still, I don’t want to go. I won’t. I haven’t.

Before I get carried away, I have to say this wasn’t the biggest reason I stopped going to church. I hadn’t been going for a year or more before we reached this point, so it wasn’t exactly a grand stand on religious principles.

For a while we went through an awkward religious transition. Cheryl took the kids to Mass on Sundays, taking care of their weekly worship obligation, while I stayed home. Then on Wednesday nights we would ferry Beth over to the Lutheran Church for confirmation class. Cheryl tried taking her to the Catholic version, but she didn’t like it.

When Beth had a crisis of faith the working hypothesis was: it’s my fault too. Can you see a pattern developing? Beth’s a smart kid. We thought she saw me skipping church and figured dear ‘ole dad had gone atheist. If dad didn’t believe in God, one of the adults forcing her to go to church all these years, what was she supposed to believe?

It turns out we overestimated my influence (in my opinion). She’d been harboring doubts for a while.

One Sunday not so long ago, Beth went up to the priest after Mass and asked, “how can you accept what we learn from science and still believe in God?” It was a great question, but the poor priest wasn’t prepared to be ambushed by a twelve year old right after Mass. One thing I can say for Beth, she’s not afraid to ask the tough questions. I think she gets it from Asperger’s. She doesn’t get it from me.

Later, she approached our old pastor at the Lutheran Church after confirmation class and told him she didn’t think she believed in God anymore. Afterwards, he told us he didn’t think it was a good idea for her to come back. That stung, but he did give a reason – or try to. He said if she was going to continue going to Mass, it would be too confusing for her to continue taking confirmation classes at a Lutheran Church. I called bullshit, though admittedly I called it from a position of weakness. Beth’s a smart girl. Set aside a few sacraments, saints, the Pope, the attention given to Mary, the roles of women in worship, the rhythm method, and celibate priests, and it’s practically the same religion, right?

A crack formed in my nice, comfortable bias, and my objections to going to church crossed further over the religion line.

I’ve since had several Science v God talks with Beth. I’ve shared a few of the reasons why I stopped going to church. I’ve reassured her I DO believe in God (over and over), but I’m forced to admit actions speak louder than words.

I wonder if she believes me. I wonder if she senses I’m holding something back. I wonder how she’s been affected by my debates with the in-laws over religion, and specifically over Catholicism.

Sometimes I haven’t been very nice.
Sometimes I’ve been an ass.
Sometimes my wife has told me to stuff it.

It seems like a long time ago, but there was a time when I thought of myself as an optimist. I might not have always carried myself that way, and others might not have seen me that way, but I saw it. More importantly, I felt it. In between bouts of major depression – which weren’t that often, I generally thought things would work out. I didn’t have any reason not to. I was an upper-middle class white kid who didn’t have to work a day in his life, until he graduated from college. I did mow lawns in the neighborhood so I could buy a motorcycle suitable for tearing up the abandoned orange groves. I had a stable home life. I did well in school. Things did generally work out for me.

Over the last few years a few things seemed to pile up on top of each other. My mother’s horrifying fall into mental oblivion and institutionalization, my dance with cancer, my longer than expected tug of war with depression, the long road to finally finding a diagnosis for Beth, the headaches that bothered me for a while, the sleep disorder that has defied treatment, that keeps me perpetually tired, and the icing: cancer’s return – all have tested my optimism. Mostly, I’ve failed – under circumstances better people would shake off with relative ease.

My failure isn’t complete though. I haven’t lost my capacity to enjoy myself. When I’ve temporarily crawled out of depression’s grasp, I’ve regained enthusiasm. My sense of humor, such as it is, returns. Still, I always feel a little darker, and of all places I feel it acutely in church. It goes beyond Catholicism v Protestantism. No matter where I go, church goers seem to toss around certain platitudes and reassurances with no more thought than throwing beads at a Mardi Gras parade, but with feigned enthusiasm and absent genuine concern. It’s like everyone reads from the same script, and even they’re bored with it. It’s like fingernails on the chalkboard of my soul.

“You just have to have faith.”
“It’s all part of God’s plan.”
“We’re all praying for you.”

It all sounds rote.

I do believe in God. In some way, I think he/she/it cares what happens to me – though I’m not sure I understand the relationship. Does God’s love mean what we think it does?

I do not believe God is going to swoop down and cure me because I’ve prayed the best, the hardest, or had the purest faith. God may have a plan, but I’m not sure this is ALL part it. (I think it’s more of a rough outline.)

I’ve been asked if I pray. I do, but not the way others do. I don’t see prayer as a shopping list. I don’t go in expecting miracles. I believe they’ve happened over time, but rarely. If you could just dial one up with a prayer wouldn’t it dilute the brand? No, I see prayer as more mundane – if speaking to your creator can be considered mundane. Prayer for me is more meditative. I ask for things, but often they’re things I have the capacity to do for myself. I ask for strength to cope with the challenges life brings. I ask for the opportunity to make a small difference in someone’s life. I ask that someone might be there when someone else finds a need.

I see the power of prayer suggested by others as a kind of faith trap. What happens when you ask and you don’t receive?

I’m not looking for a faith healing. When I offer my prayers to others, I’m not handing out empty reassurances that all of life’s challenges are a small cog in the machine of “greater good.” I’m praying that people, myself included, will do the right thing. I’m praying because I believe in God, but I have trouble believing in people.

You may not believe me, but I do. I believe in many of the teachings of the religion of my childhood (from what I remember – I am not a Lutheran in good standing). However, I sit in church looking around and I fear many of the messages preached won’t survive their passage through the doors. When I look at my family and friends near me, I feel warmth in my heart. But when I look around, I imagine town hall meetings in churches much like mine, over-run by Tea Party crazy. I see people with hate in their hearts, and hateful things spewing from their mouths with the spittle of fanaticism. That’s when the darkness settles in, when church stops being a celebration and starts pulling me down depression’s hole. I know it’s petty. I know it’s ungrateful. I know it’s cynical. I know I’m more than a touch hypocritical. After all, I’m judging – in many (if not most) cases unfairly.

I’m not proud of myself, but there it is.

I did not know that

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In April it will be three years since I was diagnosed with leukemia, and I still don’t know my Doctor’s diagnosis. Oh wait, it is April isn’t it?

You’ve heard me say “Hairy Cell Leukemia,” but that’s the common name, a nickname. At least I hoped it was. What self respecting disease refers to itself as hairy? Surely there was an important, scary sounding scientific name. More importantly, I wanted to know what my oncologist tells my insurance company. I mean, that’s what makes it official, right?

I ask you: if a man gets sick in the woods and no one is around to pay for the treatment, was he ever really sick?

We’ll get back to the name in a minute.

A year or two ago my first oncologist’s practice merged with a larger practice, and the larger practice (a statewide mega-practice) wasn’t taking my insurance “yet.” After a few “regrettable” miscommunications (wherein I was presumed the mistaker) I flew the coup for greener practices.

Only now, with the wisdom of hindsight, the other practice doesn’t look so green. It looks more like Pantone 1-5-2 C (or Hex #B59B00 if that helps). If I really must hold your hand, it’s sort of a yellowish-brown.

The new oncologist committed a number of sins, according to my wife and my primary doc. That is: she left them out of the loop by not giving them the scoop on the leukemia’s coming out party last August. As I wrote earlier this year, I was happy living in consequence free, ignorant bliss for six months. My wife on the other hand, does NOT take deception sitting down, regardless of intention.

As a result, a two front war was waged for the newbie’s ouster. Lucky me, the fronts were either side of my head (though to be fair, my dear wife did most of the fighting, with my doc playing more of a reserve role). So last week I was browsing the online guide of providers blessed by my insurance and low and behold, my old oncologist (with his new mega-practice) was back in its good graces.

Almost as fast as you can say, “I’m sorry Cheryl, I forgot to call today. I’ll try to remember tomorrow…” I was on the phone making an appointment. All they wanted was the last couple labs done by the newbie oncologist, which I picked up last Thursday.

And that’s when I saw it, at the top of each page:

Diagnosis: Unspecified lymphoid leukemia, without remission
Histology: Hairy cell leukemia

Yep, now it’s real again.

For old time’s sake I googled Hairy Cell. I’ve read all this before, but I’m not sure I’ve written it down. I’m a real self-starter when it comes to anxiety. On a darker note: there is no cure. Patients require lifelong monitoring and follow-up. Patients have as much as double the risk of developing a second kind of cancer. Most patients go ten years or longer on their first remission, with subsequent remissions often shorter. My first one went two and a half years. Many sources say it’s most common in white men over 50. According to the Hairy Cell Leukemia Research Foundation, the median age of diagnosis is 52.

I am not now, nor was I 50 three years ago. (I’m 38 now – 35 back in the good old days.)

On an interesting note: in the US, 3 in 1,000,000 men will be diagnosed each year with hairy cell, as opposed to 0.6 in 1,000,000 women. Ten percent of those patients will not require treatment this year, as it’s only treated when it begins to affect lifestyle, or cause dangerously low levels of white/red blood cells and platelets. When this happens, the body is over producing defective, hairy white blood cells which clog up the bone marrow, affecting the body’s ability to make useful blood cells. In the case of hairy cell, it’s always the B cells which are abnormal, or hairy in appearance – cells also known as lymphocytes. This can result in excessive bleeding, bruising, anemia, fatigue, weakness, weight loss, loss of appetite, and all the great things that come with a suppressed immune system. It can cause the hairy and other cells to accumulate in the spleen, causing it to become enlarged. In some cases it’s removed, but not necessarily just to relieve swelling. It can also cause swelling of the liver. In some cases blood transfusions are necessary to replace dangerously low blood cell counts.

Less than 2000 people in North America and Europe will be diagnosed with it each year. Worldwide, only about 200 will die from complications associated with it.

Note: I don’t intentionally conflate a smaller diagnosis sample with the deaths taken from a larger population to make mortality rates seem higher than they actually are. 200 deaths worldwide is a very small number. These were the only interesting stats I could find for a relatively rare disease. Just keep in mind these are apples and watermelons – if you haven’t guessed already.

It is a chronic form of leukemia, thought to be a sub-type of chronic lymphoid leukemia. It can go years without being detected, often given away by general complaints of fatigue and blood work.

The good news is more than 95 percent of new patients are successfully treated by a single, seven day course of chemotherapy (cladribine), and it’s normally effective again. Although it put me in the hospital for two weeks in isolation (which isn’t normal – most people can take it at home with a portable pump in a fanny pack), it did work for me.

So all this time I knew what was in the name, but I didn’t know the proper name itself.

Boy, that’s a load off.

Losing my words

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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.

Digging for pain and finding a vein

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Whining about your dentist is a blogging stapple. Lucky for you, I’m pro-staple.

“Are you ok?”

This is the great rhetorical dental question of our time. I love it.

No offense to any women dentists out there, but this is the point in the post where I pretend to be something I’m not, and slip into the vernacular of the “real man.”

I love it because I think it takes some real stones to ask it. Sure, you’re lying prone with sharp – and often powered equipment in your mouth – but they don’t know you from the criminally insane. That question, under the wrong circumstances, could be a real problem.

Alas, I am not criminally insane, though I am reminded of something Salvador Dali said: “The only difference between a madman and myself is I AM NOT MAD!”

Back to my dental encounter…

“Oh yeah. The veins in my neck bulge out like this all the time. My lips and jaw quiver like they have a life of their own sometimes. I have no idea why.”

Of course, that’s not what came out of my mouth. I was counting on it. I’m non-confrontational by nature. Instead, a series of grunts and seemingly random noises on the low end of the register came out of my mouth (along with a slurry of drool, chemical run-off, and blood). Folks in the biz call it “chair-speak.”

Although I wonder, have dentists and their minions (aka hygenists) evolved the ability to understand chair-speak? Is it like the way parents learn to understand their children’s early attempts at communication, long before others can? Or is it a more innate ability of the species – like a mother’s ability to interpret a baby’s cry and instantly know what’s wrong.

Either way, I was obviously not relaxed, and I owed it to the latest quiver in my dentist’s arsenal.

I don’t know what it’s called. I think of it as “Satan’s Pickax.” Think of a combination tool of discomfort, a Swiss Army Knife of dental torture if you will: a razor-sharp pick, high-pressure washer, and a carpenter’s router. Plus, it also comes with mood music… it wails like a banshee who stole your coach’s wistle from high school phys-ed.

Good stuff.

To their credit, they did try swathing my gums with a numbing gel. To their discredit, they used a little extra elbow grease. It reminded me of folks who eat food with “half the calories,” but eat four times as much of the stuff.

Step right up folks! We’re offering one half the sensitivity while achieving two times the pain!

Otherwise, it was a routine visit. I don’t need major surgery. In fact I was congratulated on my superior brushing technique – which almost masks the fact I don’t floss enough.

I’m a big fan of the backhanded compliment, so I can appretiate it when someone works at their craft.

Irresistible forces

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samoas.pngOnce again it’s cookie season. It’s that time when a clandestine organization spreads out, from sea to shining sea, bringing seemingly innocuous treats to the masses. The organization, code name: “The Girl Scouts,” prey on an unsuspecting public with sweet faces and sweet treats.

But there’s a dark side to their mission: addiction and control. You see, they may seem like ordinary cookies, but the truth is they’re much more. These “Girl Scouts” cast their cookies like a fishing line, waiting patiently for a hook to set. Like nicotine, heroin, or crack, the unsuspecting public are quickly helpless against the cookies, which overwhelm the senses with the first bite. From then on they’re like a column of Pringles… you can’t just eat one. Without thinking, boxes disappear almost without notice… all due to the thrall of the cookie. People find themselves wandering to the closest grocery store, looking for a dealer waiting just outside the automatic doors. There, they find tables well stocked with several varieties, but all with the same intent: to fatten the American calf.

We all know what happens to the fatted calf, don’t we?

Friends, I’m here today to warn you against this growing threat. I too have been a victim. The other night I fell to the Samoas’ spell. What started as an innocent bite turned into a late night binge on cocunut caramel evil.

Don’t be like me. Resist! Pass the word. Please, for the love of Richard Simmons, don’t take that first bite.

The regrettable application of long term memory

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Have you ever forgotten what it was like to feel good? I’m almost there. I almost have to flip the calendar to find that last, blissful day.

The worst part of it all is it may be self inflicted.

“Wait a second, how is a cold self inflicted?”

Kudos to me for such a good question. My daughter inherited my gift for interrogation, but that’s another story.

The cold started innocently enough: a few sniffles here, a few coughs there. For those of us familiar with allergies and sinuses more concerned with mucous production than breathing, this is nothing new. In fact, it’s one reason why many of my colds go untreated for so long – something my team of doctors have advised against due to my immunity issues.

This time though, I was really dumb. I went almost two weeks until I called my doctor. I did a course of treatment. I went to work. I went to court. I wasn’t feeling better. Then I did what many of you would do, if you were in my place: I went to Disney World for the long holiday weekend. Trust me, if your kids are half as cute as mine, you’d go too. Of course, it was a long slog. It took an effort to remain vertical, but I made it home… exhausted. The next day I went back to work again.

Feeling worse (big surprise) and short of breath, I went to see my doctor after work, that first day back from Disney. She took a listen to my lungs and she heard more than she wanted too, telling me I had a pinch of pneumonia.

All of this was really exciting to me. I’d never had pneumonia before.

That first course of antibiotics did little. Even the steroids didn’t clear things up. That second one did nothing, so I made another call – and picked up another prescription – number four if you’re keeping score. It’s hard to believe we’re way under the 7.5% of adjusted gross income for deducting medical expenses. A few days passed, bringing us up to date.

It turns out I’m probably having an allergic reaction this last antibiotic. Who doesn’t love a good rash? The good news is my cold symptoms are finally easing. My bronchi are acting less like sieves and the nasties are slowing their decent from my sinuses down the back of my throat. However, this latest aborted treatment brings the list of antibiotics I’m allergic, or had some kind of bad reaction to five: Penicillins, Sulfonamides, Quinolones, Cephalosporins (the early ones anyway), and now possibly Clarithromycin (though I haven’t had a problem with some of the other Macrolides – assuming you don’t count nausea and vomiting as a problem). I’m more worried than ever that I’m untreatable, which ain’t great for someone who seems to get sick more often than many.

So here I am: fresh off my circumnavigation medical treatment theory… back to treatment plan A (mine), or letting it ride (sans drugs). My symptoms are a bit better this morning so my doctor wants to see if it’ll resolve itself (with a boost from the Clarithromycin already in my system). This might have been the right track all along if it’s a virus, but my docs always want to do the antibiotic thing to prevent secondary infections.

All I can say is: ugh.

Phizer, GlaxoSmithKline, Roche, Merck, Wyeth… where are you when I need you?

Is it paranoia if your appliances really are out to get you?

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“There is only one way to happiness and that is to cease worrying about things which are beyond the power of our detergent.”
– Epictetus, Greek philosopher (AD 55 – 135) – disputed, alternate translation from the original text

Cheryl really wanted me to write this post.

“John, you’ve got to blog about this.”

See, I told you.

“Why don’t you write about it?” I replied.

“It’s not my blog.”

“So, I could set you up as another author. It could be our blog.”

“But I’m not funny.”

“Wait. You think my posts are funny?”

“Well, not all of them. Some of them are kinda depressing, but others are a little funny.”

“But they’re not supposed to be funny… any of them. These things are straight up.”

“Do you have a doctor’s appointment coming up?”

I do, as it happens, but enough of this banter. This post isn’t about me, my grand tour of medical specialties, or my beloved.

You see that. I lied. I’m really very sorry.

No I’m not.

This post is about Maytag and their sinister plot to drive Cheryl crazy.

When I think of time – specifically keeping it – I think of the Swiss. I don’t know why. I’m not an expert when it comes to clocks, watches, timers, or the Swiss. Somehow, at some point, the Swiss and reliable time keeping got stuck together in my brain.

It’s been stuck ever since.

When I think of Maytag I think of the man. Mind you, I’m not talking about The Man. I know Maytag isn’t keeping me down – not in the grand scheme of things anyway. No, I think of that lumpy sap from the commercials, waiting for the call that never comes. One thing that definitely doesn’t come to mind is keeping time, and our new(ish) washing machine only reinforces this disassociation.

In many ways I’m really pleased with our new(ish) washing machine. It’s one of those nifty front loaders that uses a lot less water, and it was reasonably priced. However, it has one feature that drives Cheryl nuts: it counts down the time remaining until it’s done. By itself this wouldn’t drive Cheryl crazy, or I don’t think it would. What’s maddening is it’s last minute that isn’t a minute. You see, it taunts you. The last minute is ALWAYS much more than a minute. I know. Cheryl’s timed it. What’s particularly insidious is it’s variable schedule. Sometimes the last minute is five. Other times ten. It might go ten cycles doing eight minutes just to suck you in – then go twenty.

There’s no other way to explain it.

It’s evil.

Medicated me

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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.

Gators in a close one

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I’m used to UF winning football games, but not by three points, and definitely not with less than 15 seconds left on the clock.

I needed that like I need elective oral surgery.

Why do we do this to ourselves? I tell people I’m not the biggest sports fan, that my life doesn’t wax and wane on the outcome of a game. I prefer to think of it as a half-truth rather than half-lie. Come to think of it, I can’t recall the last time someone said “half-lie.” Why is that? Don’t tell me everyone else is as delusional as I am. In either case, it used to be easy to read my tell – or hear it (down the street). It’s one of the first behaviors Cheryl modified after we got married.

There’s no more shouting, unintentional spitting, or veins popping out of foreheads in the Kauffman household. No sir!

Now I’m more subtle: fist clenching, teeth gnashing, back going rigid, head thrown back – kind of like I’m having a seizure.

I suppose in a way it was good. Make that two ways: the Gators did win. Plus, it was nice to get the ‘ole ticker running again. Or was that sprinting?

Status

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It’s not as bad as it sounds, or will sound (if you can make any sense of it). This week I’ve been sick (again/still – pick your adverb) and between medications. I’ve been weening myself from caffeine, on doctor’s orders, and I’m suffering the consequences. My meds of choice for headache are no longer part of the arsenal – due to the caffeine, so I’m doubly screwed. The doctor who recommended I stop the caffeine (not all at once) said I should go see my primary about my headache medication, and like an idiot I didn’t rouse myself to do anything about it until it was too late. My primary’s office was closed for the week. Throw in a new medication that made things MUCH worse (the one and only time I took it), and the few days it’s taken to get back to where I was before, which wasn’t great to begin with, and you get a really bad week for ya. If memory serves, that’s the English approximation for the Russian word for “me.” Or maybe it’s “I.” Maybe it works as both. Dr. Mann would be so disappointed in me. Я не знаю!

So don’t worry. I wrote this post last night, during a particularly dark mood. Today already feels like a better day. Autumn came in earnest this morning, with a little bit of cool air, and I love it.

—

I don’t mean to mislead you. I have none – status that is. I’m (probably wrongly) assuming you’ll think of the kind you’d equate to someone’s standing in the community. Heck, I’d be happy to be standing at all.

I’ve been floating. It’s been a while now. I’ve tweeted a bit. I’ve punched the clock. Yeah, The Clock. I’ve seen a doctor. I’ve seen another. I’ve seen my mother.

Yep, that kind of status.

Cheryl wants me to see yet another – doctor that is. My doctor brought it up too. I asked the other, but she changed the subject. Damn psychiatrists.

I think… no, I take that back. I haven’t been thinking. I’ve been hurting. That’s my status. How often do you see that on Facebook? Maybe you’ve seen it a lot. Hurt has a way of turning you inward. It’s hard to see others when you’re looking the wrong way. I keep waiting for a doctor to turn me around. I think… no, I know everything would be better if hurt went away, if I let myself look in the right direction.

I’d just like to enjoy things again. This month has been birthday season in my family. Almost all if them come within a few weeks of right now. I’ve been MIA for most of it. I’ve been checked out, either physically, emotionally, or both. We celebrated mom’s birthday this week. It was the first time in a while I’ve been in the same room with my first family. Even that couldn’t pull me all the way back. I sat next to my sister, across from my wife and two adorable kids, just down from my parents, and the baby of the family at the other end with her family. I still wasn’t all there.

I have flashes. Some days something throws a switch and I’m me again. The pain that visits behind my right temple, or behind my right ear, visits someone else. The dark cloud of depression that fills up my mind, crowding out nearly everyone and everything else, blows out to sea. The infectious invaders are beaten back by my immune system, sometimes with an assist from my MD. I feel good. I feel like I can make the people around me feel good. But it doesn’t last nearly long enough. It doesn’t happen nearly often enough.

To be honest, things probably look a little worse than they really are right now. My doctor recommended (strongly) I give up my favorite drug: caffeine. I’m in the process of weening, and my body’s in the process of jonesing. Oh, and did I mention the nifty little sinus bug that’s got some game? Take your pick: caffeine withdrawal, sinus infection, my garden variety headache, or what the heck… may be a combination of all three.

I’d give anything to someone with the power of the prescription pad right now. Or would I? Should I? Oncology. Immunology. Psychiatry. Dermatology. Ophthalmology. Otolaryngology. My plain ‘ole GP. Sleep Medicine (I tried to find an appropriate “-ology” and wikipedia failed me). More than one person suggesting neurology. An ominous comment from a friend about one of them in particular, and my wife wishing I’d pick another. Not enough or too much?

I wish someone knew something. “You definitely look better.” A week goes by. “You definitely look worse.” For a couple years I’ve heard some variation of “I’d like to try….” I don’t blame anyone though. I know they’re really trying. I wish medical science knew more. I wish there was a little less error. I wish I wasn’t the trial. I wish I believed something else had an answer. A week between visits I lost more weight than I should have. My blood pressure dropped… a lot. (My heart rate is fine though.) They’re drawing more blood. My doctor is working on insurance approval for extensive scans. Go fish.

I wish I could tell you about something else, but the last thing I need is trouble there.

I wish I could stop wishing.