I upgraded to WordPress 2.9 today, and took the opportunity to try a new theme, too. As you can see, I still have some work to do with the buttons and the stylesheet, but everything should be functional for the time being. I’ll try to get it all cleaned up by the end of the week.
Mon, February 8 2010 » Uncategorized » No Comments
For her edition of Patients for a Moment, Selena asked: “What are the four letter words you use to describe your life with chronic illness?” I could fill a month’s worth of posts with just the profanities that come to mind—but who would read it?
“Suck” would be the most descriptive. “Pain” is also appropriate. “Poop”—also apt. But the four-letter word that is most problematic, the most central to my disease, the most consequential and challenging of all is this: “food”.
Granted that’s not much of a description, so let me elaborate. I have a “digestive disease”, which means I wouldn’t have any problems if I didn’t have to eat. If my intestines were useless vestigial organs—like knuckle hair—I would be fine. But we haven’t advanced that far: I still have to eat, and what I have to eat is food.
So I have a pretty complicated relationship with food. Most of the time, when I eat the wrong thing I suffer. Sometimes, when I eat anything, I suffer. And sometimes I can’t eat anything at all. I’ve been ‘fed’ through a vein, and I lived for a month on nothing but vanilla Ensure and water. I’ve been anorexic for stretches of time, simply incapable of putting food into my mouth, until I grew weak enough that my survival instinct took over and forced me to eat.
On a day-to-day basis, I’m pretty picky. I can’t eat just to eat; I have to want the specific food I am eating, to be excited about it. It has to be worth taking the risk that it will make me sick, because I never know when I will discover a new food sensitivity. My present list of food sensitivities is long and onerous: uncooked dairy, alcohol, caffeine (including chocolate), soy, hot pepper, mustard, citrus, artificial sweeteners.
It’s not all bad news: apart from that list, I can eat just about anything I want: I don’t have to worry about fatty foods, in particular, because I lost the part of my gut that absorbs fats. I just poop it out—which can sometimes be its own problem, but I still fit into pants I bought in the 1990s.
And then there are the foods I can’t live with out. Ginger: nothing is better for soothing an upset stomach. Chicken and rice soup stops diarrhea like nobody’s business. Herbal tea: just to drink something warm every now and then. Gummi bears: my favorite candy, and oh-so-gentle to my system.
Being more deliberate about my eating has also had some positive consequences. I don’t eat much junk, because I can’t. I learned to cook—I had to—just to make sure I was getting food I liked. And I took up gardening, so that summers at least have an assortment of tasty fruits and veggies—because what supermarkets are selling often tastes like wet paper.
Maybe someday I’ll transcend my need to eat, but until then I’m stuck with food: sometimes I love it, and sometimes it’s a four-letter word.
Sun, February 7 2010 » Uncategorized » No Comments
My resolution was to blog less this year – so far, so good – but this new guy makes me angry:
[Senator-elect Scott] Brown has not disavowed his support for the state’s law, which retains majority backing in Massachusetts.
Instead, he argued on the campaign trail that Massachusetts had taken care of its own uninsured, and it would not be in the state’s interest to contribute to an effort to cover the uninsured nationwide.
“We have insurance here in Massachusetts,” he said in a campaign debate. “I’m not going to be subsidizing for the next three, five years, pick a number, subsidizing what other states have failed to do.”
He’s not opposed to health reform, you see – he’s just opposed to everyone outside of Massachusetts getting it. Kevin has a good post on what this means for reform, even if I don’t agree 100% with his viewpoint (though he gets points off for keeping incoherent company). For one, I am less than optimistic that whatever reform does happen will be more “progressive”; on the other hand, if it doesn’t get passed I have a reason to keep this blog alive. I had hoped to shut down once health reform was resolved to my satisfaction, but I am beginning to fear the process might yet outlive me.
On a broader note: those folks cheering Brown’s victory need to realize this is not a triumph of democracy. In a truly democratic system, the party affiliation of the 41st most conservative member of the Senate would not matter one tiny whit. But in the system we have, the Senators representing as little as 11% of the population can filibuster policy that benefits the other 89%. You may or may not think that’s a good thing, but it’s definitely not a democratic thing.
At least Scott Brown is pretty clear: he isn’t joining the Senate to do anything good for the American people. His state has health reform, and the devil can have the rest of us.
(via Matt Yglesias)
Thu, January 21 2010 » Uncategorized » No Comments
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.
Fri, January 15 2010 » Uncategorized » 1 Comment
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.
Thu, January 7 2010 » Uncategorized » 1 Comment
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.
Fri, January 1 2010 » Uncategorized » No Comments
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.
Thu, December 31 2009 » Uncategorized » 3 Comments
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.
Thu, December 17 2009 » Uncategorized » No Comments
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.
Wed, December 16 2009 » Uncategorized » 4 Comments
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.
Sat, December 12 2009 » Uncategorized » No Comments
