PFAM is up at Everything Changes. Thanks to Kairol for hosting again!
You’ll notice a bit of a change, if you haven’t already – I’ve surrendered to the inevitability of themes. In fact, I’ve gone one better: each host will ask a question, and solicit answers to it from other bloggers. My hope is that this will get us talking to each other even more than we already are.
This post is a bit graphic; if you’re squeamish, all you need to know is that I was in rough shape last night, but managed to avert an ER visit with some brilliant MacGyver-like improvisation. I wouldn’t even share the details, except that I feel so awesome about myself that I have to brag about my total awesomeness.
Now that I am speaking to a totally empty Internet (pin drop drop rop op p), the gory details: around 6pm I developed cramping in my gut, the result of (as far as I can tell) being massively constipated. By 9 pm, the cramps were pretty bad, and I started to wonder if I was in trouble.
By 11pm, I knew I was in trouble: the cramps were alien-ready-to-pop bad. The first time I had cramping this bad, I landed in the hospital. The ER docs got a surgical consult, and the surgeon wanted to open me up like a grouper right there. I talked him out of it: the deal we made was that if cramping turned to vomiting, I’d get the surgery. I hung on for a year or so, and ultimately had a short stricture (narrowing of the intestine due to scar tissue) removed from my small bowel. That was seven years ago, the last time I had cramping this bad – and not coincidentally, also the last time I could stand to eat sun-dried tomatoes. By 11pm, I had begun to wonder whether this really was just constipation, or perhaps another stricture.
A sane person would have gone to the hospital, but not me. I have a terrible fear of being trapped in a hospital – a fear justified because I have in fact been trapped in a hospital. When you enter a hospital through the ER, you are entirely at the mercy of the hospital and its staff. I knew that if I went to the ER, the best-case scenario was that I’d spend a a miserable hour or two waiting to see a doctor, get a couple of invasive tests done backt-to-back, and come home sometime this morning totally exhausted and spent. Not so bad for me – I don’t actually have a job, and can afford to lose a day recuperating – but my ambulance driver/hospital attendant would end up missing a night’s sleep and probably a day of work.
So it became a question of determining, on my own, what the problem was. I reasoned that if it was constipation, I could just flush it out with an enema. In fact, a lot of folks with ostomies “irrigate” their bowels regularly as a way to control their output – but I don’t, so I don’t have the right equipment. I joked with my attendant that I could use her turkey baster; she said only if I promised to buy her one that looked nothing like it, so there was no question as to whether it was the same one.
Unfortunately, turkey basters all look pretty much the same. Instead, I found an empty bottle of contact-lens solution. It was a bit small and the top was hard to fill, but once prepared it was a half-decent enema delivery system. I cut the top off a pouch for a makeshift irrigation sleeve, and sure enough: shortly after a thorough injection of warm tap water into my bowel, (ahem) things started (cough, cough) happening. Copiously. By 2:30 am, I knew I had avoided a pointless trip to the ER : they would have done the essentially the same thing, but would have thrown in a bunch of expensive tests to come to the same conclusion: that I had a bad case of what’s called, in medical terminology, the “bricked shits”.
Still, I don’t suggest you try this at home – on the infinitesmal oddds that you have a stoma and bad cramping and a phobia of hospitals. I felt comfortable doing it because I have a solid understanding of my disease and how my body reacts, and – oh yeah – that crippling fear of hospitals. Of course, if I had proper irrigation equipment, it would have been not the least bit controversial; the only problem last night was that I had to improvise with materials on hand. You can bet I will soon acquire the right tools for the job.
And, of course, I might be wrong. The relief might be entirely coincidental, and the problem might in fact still be a stricture. That’s something I definitely have to follow up with my gastroenterologist about, which I will do soon but on my own terms. But until he tells me otherwise, I am pretty sure it was constipation.
Meanwhile, even though I got four hours of sleep last night and my gut feels like I passed a pineapple whole, I am feeling pretty awesome this morning. In fact, it would almost be worth going to the ER now after all – just so I could have somebody to trash-talk about how awesome I am.
I somehow lost the icons and links to my RSS and ATOM feeds; if you were looking for a way to subscribe, sorry. They are now restored, and should be functional. Let me know if you have any problems.
It feels like an alien is about to pop out of your guts. You think I’m exaggerating? You have no idea.
Before I get to that, I want to clear my tabs in this last post of the year. First, you should read Bob Herbert’s op-ed about the Senate’s plan to fund health care by taxing “Cadillac” insurance plans. I was indifferent to this proposal, but Herbert makes a very good case for why it is wrong, and so I am now against it. We can only hope the mechanism is abandoned in the reconciliation process.
Next, this article from Tony Judt, about what it’s like to live with ALS is striking and moving – and especially resonates when he says, “it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.” I have often thought the same of Crohn’s, and I am sure it’s true of a great many other illnesses.
Lastly, back to Alien: I happened on Dan O’Bannon’s obituary in the NY Times over the holiday. O’Bannon wrote the screenplay for Alien, as well as several other horror and science fiction films. O’Bannon also had Crohn’s disease – in fact, the obit quotes him as saying, “the idead for the the monster in ‘Alien’ originally came from a stomachache I had.” I’ve seen Alien a half-dozen times, and now it makes perfect sense: how I’ve wished the monster gnawing at my guts would just kill me and/or scamper away.
Of course, most doctors will tell you that Crohn’s is incurable but not terminal – so it’s notable that the obit states, “the cause [of death] was Crohn’s disease.” That could mean any number of things, from surgical complications to sepsis to self-assisted euthanasia – there are a lot of ways to die from Crohn’s disease. But the fact that you might identify a proximate cause of death in no way changes the underlying cause of death; so when doctors say Crohn’s isn’t terminal, what they mean is that in theory you could live a normal lifespan, if you can just avoid all the different ways people with Crohn’s disease die prematurely. Props to whomever named Mr. O’Bannon’s cause of death for what it was.
Sad though Mr. O’Bannon’s passing is, I am at least grateful I can finally claim a movie for my disease. People with AIDS have Philadelphia, and people with ALD have Lorenzo’s Oil – but those of us with Crohn’s? We have frickin’ Alien – and that’s a pretty badass movie to have.
That’s it for 2009. See you in the new year.
I haven’t posted about health care reform in a while – partly because I’ve been distracted, partly because I’ve been waiting to see how things shake out in the Senate. Now that I am not so distracted, I discover things have been not so good.
For starters, the Senate bill never had a strong public option. Then they dropped even what they had, in favor of a weaker compromise. Then it dropped the compromise substitute for the public option – apparently, due to the influence of Sen. Joe Lieberman (I-FU). (When I was a younger man, and Lieberman was running for Vice President, the two of us shook hands on a runway in Orlando; nowadays, my skin crawls whenever I think about that day.) If health reform fails, Joe Lieberman will bear much of the blame.
Which isn’t to say that all hope is lost. The House bill is still good, and the Senate bill still has some incredibly valuable language. Even if the Senate text was all that became law, it would still be better than the current system – which shows you how bad things are, if even milquetoast legislation is a substantial improvement. For more on this theme, Ezra Klein has had a few compelling posts about what the Senate bill might accomplish – this one, for example. It’s also worth considering Nate Silver’s 20 Questions for liberals who are clamoring to kill the bill, and Jon Cohn’s response to the same activists.
Obviously, I’m not advocating killing the bill. But at the same time, I’m not spending a lot of my energy advocating for the bill. I say it’s acceptable, but it’s also tremendously disappointing. The public option was important – it was already a compromise from single payer or similar government-intensive reform; Jacob Hacker has a helpful post about what we’ve lost there. Moreover, I am mostly convinced at this point that the Obama administration never intended to deliver comprehensive health care reform, and what they do plan to deliver is a giant new pool of money for insurance companies – in which case, Joe Lieberman is not so much arch villain, as eager henchman in this story.
Assuming the Senate bill makes it through without further amputations, the bottom line for sick people is that it should be a good deal easier to obtain and keep health insurance. It might still be relatively expensive, but folks with lower incomes will get subsidies to help them buy that insurance. The insurance companies can’t eject you arbitrarily, or refuse to pay claims for pre-existing conditions, but they can impose an annual or lifetime limit on your care. There may be some changes that help to improve the quality of health care, but no obvious means by which to contain costs.
That said, we are now at the point where only the most die-hard ideologues can object to this bill. If you’ve been on the fence – perhaps you were suspicious of a “government take-over”- the ball is now yours: this bill changes a lot of things, but it is nowhere near a government take-over of health care. So if you haven’t yet called your Senators to voice your support for reform, now is your chance. Those of us who favored more comprehensive reform have already made our voices heard; it’s your turn. Read a little, think a little, and then call or email.
We’re pretty close to the end of this road, and though it didn’t lead where I wanted it to, we can at least make sure it doesn’t lead us back to where we started.
Welcome to the final Patients for a Moment of 2009, which has the unofficial theme of “Duncan Cross Needs To Get His S–t Together”. You see, I dropped the ball on PFAM this month, and missed getting a host for December 2nd. This week, I’ve been too distracted to beat the bushes for submissions – so a big thanks to all who submitted anyway. And finally, I’m late getting this edition up because I got a filling this morning; the taste of Septocaine and scorched enamel is still fresh in my mouth. That means this is also the “Duncan Cross Tries Not To Drool On His Keyboard” Edition.
But enough with excuses – and onto the submissions:
Leslie at Getting Closer to Myself compares chronic illness to a marathon: “It’s a long haul. You need to learn how to pace yourself so that you’ll survive to the finish line.” Leslie also wonders about getting a tattoo – something I have fresh experience with. My only advice is to be really, really sure of the design and the artist before you commit. Four parallel lines: how hard can that be? But apparently, I found the one tattoo ‘artist’ in the world who isn’t going to let double retinal detachment keep him from his calling.
Kairol at Everything Changes asks a question that is near and dear to my… well, not my heart, necessarily: Testicles – Take ‘Em or Leave ‘Em? The question is whether the consequences of testicular cancer – the lack of ballage – are a big deal for survivors’ partners. The guy himself will of course worry, but does it matter to anybody else? In high school, I had a friend with an undescended testicle; we called him the “Uniballer”, and I don’t think the absence hurt him in the lady-friends department, so much as his lack of hygiene.
Kelly at RA Warrior asks whether rheumatoid arthritis is the “Scarlet Letter” of diseases. I would just point out that lots of people are embarrassed by their diseases, and moreover that Hester Pryne earned her scarlet letter. We ought not to let ourselves believe our diseases brand or even identify us, so much as we can help it.
Lisa at Brass and Ivory explains how loud noise and chaos can lead to crippling pain in MS patients. I think a lot of us who are ill get easily exhausted and overwhelmed in those sorts of situations, though it sounds like there’s something especially challenging about MS in that respect.
On a related note, Selena at Oh My Aches and Pains offers a gift-buying guide for folks with fibro – but which might also be useful for anybody whose illness makes malls and shopping centers unbearable.
Finally, Steve at Adventures of a Funky Heart wonders if a study from 1981 suggests a possible cure for his illness – and wonders why there hasn’t been any follow-up since then?
And that’s it! Short and simple. Whatever holiday you happen to be celebrating right about now, I hope it is happy and wonderful. In the meantime, the PFAM archive and calendar is available as always, and the next edition will arrive January 13th.
I was at a church meeting last week – because I’m in one of those denominations that has lots and lots of committees – and we were talking about spiritual development. One person said it only really happens in times of hardship, to which I reacted a little too strongly for the context. Let me just say that reflecting the light of baby Jesus is rather hard when your most comfortable mode of communication is acid sarcasm. In the church meeting, I had to backtrack; here on my blog, I can press ever forward.
So anyway: about hardship and spiritual growth. This is a fairly common attitude in the church, and even among non-believers vis personal development. The idea is that you only ever grow when forced to, when conditions require you to. The jocks at the gym will tell you, “That which does not kill you makes you stronger” – but give them the choice between dengue fever and shooting up juice, and see what happens.
The complement to this idea is that suffering is at some level beneficial, because it forces you to undergo the growth that you otherwise wouldn’t. In religion, this is often expressed as God ‘choosing’ a person to suffer to make them a better person. Elsewhere, it’s just a latent prejudice that suffering builds character, or whatever.
This meme, such as it is, needs to die. And not just die, but die a painful death – a flaming spike through the chest, or drawn and quartered, or maybe even untreated cancer.
Yes, suffering sometimes produces growth, and a number of people have discovered their better selves amid suffering. But not everyone who suffers makes this discovery, and I would say not even most. There is a surfeit of books and movies about people who triumphed over adversity, and learned important life lessons in the process – but you never see books or movies about people who were pricks before adversity and stayed pricks afterward.
For the patient, this creates tremendous pressure to find transcendance in illness. I’ve seen plenty of folks scramble and scurry to make something – anything – of their illness, like disease is a giant box of stale, wormy Cracker Jack with a surprise buried somewhere inside. These days, I think a lot of people are surprised to find out that illness, deep down, really is just pain and suck – and then despair.
But worse are the people who simply tell themselves they are better just for having gone through suffering – even though they’re still ginormous pricks. The meme is so widespread that people latch on to it just as soon as they’re diagnosed, without ever really undergoing the personal struggle that actually makes you a better person. And God forbid you discover in your experience something that doesn’t mesh with the narrative. (Along those lines, let me recommend again Barbara Ehrenreich’s excellent essay, Welcome to Cancerland.)
I want to think I have grown as a result of my illness. I am certainly more deliberate in how I live my life, and that’s a good thing. But I also have to admit that the times when I have suffered the most are also the times when I have been the most selfish, irresponsible, and unresponsive to the people I love. I am not a better person when suffering, and I doubt I am that much of a better person for having suffered.
Moreover, now that I am relatively well, I have a lot of energy that I can devote to self-improvement. I want to use some of the energy for spiritual development, and I think it’s ridiculous to suggest that I must wait instead for more suffering. In fact, what got me into trouble was suggesting that I might encourage the woman who makes my life so joyful to start beating me, so I can suffer and therefore grow; but if you really believe suffering is beneficial, does it matter what the suffering looks like?
Illness – and suffering more generally – doesn’t make you a better person. You can, in response to suffering, make yourself a better person. But you can also make yourself a better person even without suffering. In fact, in some ways it’s a lot easier – but you might not have a sense of urgent need to do so. Meanwhile, telling ourselves that suffering makes us better people makes it easier for us to ignore suffering in others – and that, as a matter of fact, makes us worse.
You probably know the mid-Atlantic region got its first snow of the season this weekend; the accumulation is still melting away, muddying my yard in the bare patches.
The snow was pretty, but I hate it. I grew up in Florida, and didn’t see standing snow until I was eleven years old. That was too soon. Cold is my kryptonite, and winter my hell.
I’ve always been skinny, so I have a hard time being comfortable in cold weather. Real cold is painful to me – like burning. I can take 100* temps with 80% humidity no problem, but if I go outside in weather below 50*, I’d better be wearing long underwear.
Even indoors it gets bad: my PCP says I have a mild form of Raynaud’s syndrome, especially in my feet and right hand. I can hardly drag myself out from beneath the comforter in the morning, and on the mornings I’m brave enough to shower, the hot water feels like acid on my toes. After a quarter-hour of work at my desk, my hand feels dead and frozen; I have to make a cup of tea just to have something warm to grasp.
Today I decided to tackle some end-of-season yard chores, and I spent more time inside trying to waterproof my hands than I did outside working. I finally settled on a glove liners under latex exam gloves under ‘waterproof’ shells – and my hands were still numb when I finished working.
All that would be true even without Crohn’s, but winter also brings a mini-flare of my disease. Sure enough, I’ve been feeling a bit off the last couple of days – nothing worth going to the hospital for, but not the relative stability I enjoyed into fall. So I feel tired and a little queasy, and I will feel that way probably till April.
Part of my current problem – it’s hard to say how much – is from last weekend’s cookie baking party at our friends’ place. After my surgeries, my system can’t deal with large quantities of sweets and fats – basically everything delicious about the holidays. I can fight it, but my sweet tooth is somtimes irresistible… at which point the little monsters in my gut go crazy on excess nutrients. Right now, my poo looks like pond scum and smells like tear gas. To fix this, I’ll have to be scrupulous about my diet for the next several days – which, of course, includes more parties.
I know lots of people consider this their favorite time of year. And me? I’m sick. Winter is hard on a body. Thanksgiving to New Year’s Day is more or less the toughest time of the year for me: lots of stress, lots of dangerous food, lots of social activity with potential for discomfort and embarrassment. Honestly, I would gladly forego the food and presents and parties if it meant I could skip from mid-November to early April every year – go to Mexico or Australia, or maybe just hibernate in bed. Consider that for a moment: I would give up Christmas to make my health just a bit better.
Since I can’t escape the season, I do at least try to enjoy it – even knowing things will get rough for me. My one consolation is that I allow myself to grouse endlessly about how much I despise this weather. I do hate it so.
(Photo from Flickr user jessicajuriga by CC license)
This is a departure from my usual topics, but it’s my blog so I get to do what I want (nyah!). Just as a warning: this is a long, boring critique of one of the stupidest movies you should never see. I would mention spoilers, but you’re not going to watch it, so nobody cares.
Anyway: I was always a GI Joe kid. From the time I got my first figure at age six until my early teens, GI Joes were my favorite toys. I probably had more than a hundred figures. So when I learned a live-action GI Joe movie was in production, I felt a slight desire to watch it, if only from nostalgia for my wasted youth. Then the movie got terrible reviews, so I waited until it came to Netflix. Let me say this: it really is bad.
How bad? Its climactic final battle scene somehow ignores the fact that ice floats. Seriously.
If you can bear any more….
Did you have a good Thanksgiving?
I had a good Thanksgiving. In fact, I had a really good Thanksgiving – maybe my best ever. Saturday afternoon, we were walking around town, doing a little shopping, and I felt so happy. I was giddy – like I was high.
It might have been the weather, and it might have been the family. It might have been the delicious meal prepared by my lovely and talented Executive Nutritionist. It might have been the hiking and the music and getting a good night’s sleep and the happy little puppies wagging their tails at me.
But I have to admit: it might have been the drugs. Specifically, paroxetine: I now take triple the dose I did when I started last summer. I originally took it because I was having trouble concentrating – a sign of depression, though I didn’t feel particularly sad. The drug has helped some with my concentration, but I’ve also noticed that I’m happier, less easily ticked off, and I have more energy. The drug has to play some role in all of this.
So back to Thanksgiving: I might dismiss my happiness as a medicinal mirage. Maybe I really had a crappy Thanksgiving, after all. This is why I resisted taking brain meds for so long: I worried it would make me fake happy, and not really happy.
My past experiences with meds played into this concern. Prednisone, among its many side effects, made me fall in love – hard – with just about any girl I happened to know. Over the course of one prednisone-infused year of college, I fell in love with a dozen girls, one after the other. None of them were the least bit in love with me, of course, and some of them were plainly wrong for me. And that experience – because it felt so real, but was so obviously a product of the chemical – made me deeply skeptical of being in love. If prednisone can do that, how can being in love mean anything?
And, in all candor, almost a decade of anti-drug instruction in school didn’t help. We children were told again and again: what you get from a pill or a needle can never be real – so get high on life! No wonder I balked at pills to make me happy: my internal Nancy Reagan was always there to tell me it was wrong. My anti-drug, it turns out, is depression.
What I have come to accept is that my emotions are no less real or valid for having a clear mechanism. If I have reasons to be happy, my happiness is not fake – even if it comes from a pill. This weekend, everybody around me – medicated or not – agreed that we had a wonderful Thanksgiving; whether or not paroxetine was making me happy, I was happy for good reason.
Same for falling in love: I have every reason to be in love with my wife – and I am, very much, but I don’t have to worry whether it’s paroxetine making me feel this way. The problem with prednisone was that I didn’t have good reason to fall in love with those women – not that falling in love is only legitimate when inexplicable.
And I think that accepting the validity of the explicable is a big step for me. Whether my feelings come from the disease, the pharmacy, or God, I have to deal with them and act on them just the same. The question, “where do my feelings come from?” isn’t nearly as important as, “what am I going to do with them?”
So yes, I really did have a great Thanksgiving. Drugs or not, I hope yours was just as good.
(Photo by Flickr user mortimer by CC License)
A novel crime against decency by Duncan Cross
