12 May 2015

Crohn's Disease, Isolation, and Driftin'

My favorite Hank Williams song is "I'm So Lonesome I Could Cry". Not only are its lyrics rich and vivid and not only does Hank sound appropriately mournful, but there's a deftness to its title that I don't think is as fully appreciated as it ought to be. The song could very easily have been "I'm So Lonesome I Could Die". Same syllables, same rhyming sound. But if it had been "Die", the song would have felt hyperbolic, even if everything else in that recording remained exactly the same.

Admitting that you're so lonesome you could cry, though, conveys biting harshness. It doesn't even matter how prone to crying you may be; what matters is that you know where your breaking point is, and Hank is telling you he's just about there and it's because of how godawful lonesome he is. There's a duality to the song. Maybe we empathize with him, because we know what it would take to make us cry. Maybe, though, we feel he's the one empathizing with us, because he knows what it would take to make him cry, and here he is singing a song about it on our behalf. Does it matter? Not really. The point stands that it's the word choice of "Cry" rather than "Die" that gives the song its heft.

I've been fighting a Crohn's flare for five weeks now. After a few days of realizing it wasn't going to subside, I started a Prednisone taper, which typically does the trick. It brought a little relief on the first couple of days, when the dosage was strongest, but by the taper's end, they had become just a few more pills in my nightly regimen. Two weeks ago, I went in for IV treatment: steroids, antibiotic, anti-nausea medication, saline, and vitamins. I was thrown off at first because the physician who saw me wasn't my regular one, but at least she trusted that I knew my condition and didn't treat me like a WebMD-obsessed hypochondriac like a lot of doctors regard patients these days. I felt better that evening, though I was in and out of the bathroom until the next morning and I slept most of the next two days from exhaustion.

I'd been given a second Prednisone taper to begin after the IV treatment, hoping that the extra boost of the fluids would help the pills finish the job they couldn't on their own. Again, though, the Prednisone failed. I spent almost all day in bed on Sunday, alternately sleeping and writhing in pain. I returned to see my doctor in the morning. This time, we took images to see what was taking place inside me.

That's what I looked like on the inside, if you were to look right up (or is it down?) through me. At the top is a thing that looks like a snake's skeleton. That's my digestive tract. What we learned from that and a blood test is that a decade of Crohn's has essentially permanently damaged part of that area. This current flare isn't being caused by inflammation, which is why the steroids failed but the IV treatment that included an antibiotic brought me relief. We did another round of IV treatment this afternoon.

I sat there in a puffy chair in a room all by myself while my cocktail was delivered to me a drop at a time. I'd brought my iPod and played the Quantum of Solace soundtrack. Originally, I picked it because one of the few things for which I've had any enthusiasm at all of late has been Bond and I think I've only played that soundtrack maybe twice since I bought it.

Then again, though, maybe subconsciously I picked it because the last time I was hospitalized was in October, 2008 just a few weeks before Quantum opened here in the U.S.

I've avoided hospitalization throughout the intervening years largely through a combination of being vigilant about monitoring my condition and maintaining what I suspect most would regard as a low quality of life. I've contemplated myself just where I fall between "existing" and "living" on many occasions. There's a chicken-and-the-egg relationship between my physical and mental health, and I have a hard time sorting out which is responsible for a given funk like the one I've been in since late March/early April.

The last time I was hospitalized, I had my wife with me every step of the way. She was fiercely protective, and having worked in various capacities in the medical field over the years, she knew the language and protocols well enough to be my ambassador, my translator, and my guardian all in one. I could focus my energies on recuperating while she asked the questions I didn't know to ask, or the ones she knew I wanted to ask but was too miserable to put forth myself.

Sitting there today with IV fluids running into my left arm and James Bond music piped into my ears, it dawned on me how truly lonesome I felt. During one of my hospitalizations in 2008, I used up a great deal of energy fending off an aggressive gastroenterologist who wanted to start slicing and dicing on me and berated me for not being on Remicade. He ran a Remicade clinic, which he reiterated a few times. I never heard a physician concerned for my health speaking; I only heard a relentless salesman who had power over me. Ironically enough, it was the surgeon who agreed with me about my approach to give my treatment time to work before cutting into me.

Dr. Remicade also insisted my appendix needed to go while I was being cut on anyway, incidentally. A decade later, I still have it. If/when the time comes that I have it removed, I might ask if I can keep it. Take it to a taxidermist and get it turned into a trophy of some kind, maybe. I haven't thought it out yet.

If dealing with that guy was as exhausting for me as it was seven years ago when I had a devoted defender at my side, how can I possibly get through it on my own if it comes down to being hospitalized again?

It isn't that there's not another person in my life who cares about me or wouldn't try to be there for me. I've said for years that if I've only ever done one thing right in my entire life, it was surely to have surrounded myself with truly wonderful people. I have an enviable inner circle. It's not an exaggeration for me to say that I probably have more Friends than a lot of people even have Acquaintances. I've got so many Friends these days that it makes incredulous my insistence that I don't confer that title casually, but I really don't. Anyone I have designated a Friend has earned their stripes over the years.

But there's only so much that even a Friend can do when you're hospitalized.

They can check in on you, whether in person or remotely, of course. They can tell you they're thinking of you and they hope you get better soon, and of course they do. They can say that if you need anything, just to ask them, but there's no way to ask of them what you really need, because what you really need is to not be so lonesome you could cry.

That feeling can hit you at any time during a hospital stay. It can be when you first wake up and realize you're still there. It can be during breakfast when the patient in the next bed gets scrambled eggs and you get literally nothing because you're not allowed to eat or drink anything beyond the sip or two it takes to wash down your pills. It can be when you want to murder the scrambled-egg-eating patient next to you because he insists on watching Judge Judy as loudly as the TV will go...so that he can nod off and snore through it. It can be when the nurse comes in and you ask when someone will come by to tell you what the game plan is and they have no idea. It can be when you realize your hair is absolutely gross because of how long it's been since you showered.

It can also be when you start trying to outline the possible and probable courses that your health will take in the coming minutes, hours, and days. What if something goes wrong? What if it goes right but it just doesn't work? What if I'm in far worse shape than anyone realized? It gets uglier from there in a hurry.

The point is, that feeling of lonesomeness can - and does - strike at any time. Your Friends are on the outside, living through their hectic but scheduled daily lives. They're dashing to work in the morning, picking up kids in the afternoon, trying to attend meetings, practices, performances, tend to household errands, and even carve out an hour somewhere in all that for themselves to decompress. They can't be expected to burst into the room like the Kool-Aid Man just before you agree to a course of treatment that makes you squeamish because the physician has succeeded in wearing you down with his bullying. There's only a quantum of solace in knowing they would if they could.

I was asked earlier if surgery had been discussed with me at this point regarding my current flare. It scared the hell out of me.

I'd already recognized the possibility and even shared my anxiety over it with a few Friends, but somehow being asked about it pointblank spooked me even more. I'm not even ready to have someone ask me if surgery has been discussed. How would I go into it, if that's what it comes down to at the end of the week? (See: Three paragraphs up.)

Friday, 15 May, will mark the tenth anniversary of when I was told by an ER doctor that I "likely" had Crohn's disease. Being an ER doc, he wasn't allowed to diagnose it, but he was pretty sure and it turned out he was right. I'd been misdiagnosed with merely having GERD a year before that, and had suffered through symptoms for a year before even that, but I regard 15 May as my Crohnniversary.

I brainstormed months ago about "celebrating" (defying) the occasion by trying to get together as many Friends as possible to do something I enjoy that Crohn's has kept me from doing nearly as much as I would like. I settled on mini-golf. I truly love mini-golf, particularly at night. On a mid-May evening, it would still get dark early enough for the excitement of nighttime while still being warm enough to be comfortable.

I haven't formally canceled the outing, but it's almost certain that I'll have to. Even if this current antibiotic treatment works as hoped, these episodes are exhausting. If it doesn't work as hoped, I'll almost surely cry.