I am shocked, SHOCKED, etc.

An article from last week. Apparently there is evidence that a junk foodie diet could contribute to Alzheimer's disease.

Alzheimer's could be the most catastrophic impact of junk food 

I am sure this will not effect ME in any way. Nope. Why would it?


Also in last week's news, I got the latest Knit Picks catalog. They're selling conductive thread and a kit called "In Touch Gloves" which has little little snowflakes of the conductive thread on the fingers and thumbs, so that you can wear the gloves and still successfully (supposedly) use your smart phone or tablet or e-reader. Pretty cool. (Although I do not have any of those things. I have my laptop and I have a flip phone, and you wouldn't believe how long it took me to graduate to those. So I'm probably late to the party on this stuff, but what can you do? I love human adaptability to minor - pardon - nitpicks.)

Knit Picks' sweet conductive thread

In Touch Gloves kit

Pink In Touch glove image from knitpicks.com

EDIT/update: like me, Knit Picks is late to the conductive thread party:

DIY iPhone Gloves from Make:Projects

Coming out with UC

 U.S. healthcare is too costly for Kevin Steinman, so he's moving to Norway

(from city pages)

"And, yes, I understand that the free Norwegian health care is bundled into the costs of daily life there. Higher prices for items like gas, alcohol, candy, and automobiles support a political culture where looking out for the weakest in society is considered natural, even among most conservatives. If we do end up spending more on our living expenses there, and I never see another health document with thousands of dollars billed, I'll consider it very worth the move for my soul."

Yep. A good read if you're looking for a day in the life of a person with IBD, specifically ulcerative colitis. I also want to point out this bit:

"Because I was signing the checks for our band's health coverage, I noticed that my health insurance premium increased at a much faster rate than my band mates'. I didn't think much about it at the time, because I was only paying five dollars co-pay for a bottle of medicine that was keeping me healthy. When I learned that the "real cost" of that bottle was $120, I felt as though the system was telling me, "Not only are you fighting a chronic sickness, but you are this close to not having enough money to stay healthy." "

This article does a great job of showing the complete layout of exhaustion that comes with UC. Sure, there's the physical pain of a flare-up, which is incredibly debilitating until you get it under control - if you can - but there is a constant undercurrent of stress about seemingly small things, such as:

- appearing (mid-flare) in public
- bowel control
- people's opinions of you (stupid, yeah, but sometimes a hard habit to shake)
- medical and pharmaceutical costs
- finding and keeping a job with insurance
- and hilariously, keeping your stress level low so you don't trigger a fresh flare. That's right. I sometimes stress about not being low-stressed. Gah.

I'm really sorry for all you folks who are sad about universal healthcare. If you are anti-universal healthcare (and I really doubt you are, if you're reading my blog), the above article is a good place for you to start to see where I'm coming from, and if you want to go further, try a little imagination. Have you, Unnamed Angry Healthy Person, ever been without health insurance? Can you imagine how different that time in your life would've been if you'd been exhausted, in terrible crampy pain, and crapping blood? How would that have affected your job search, or your artistic endeavors, or, hey, maybe your ability to take care of/watch your kids? How far in the hole would you be with medical bills?

I'll take a moment so that you can really stretch yourself and enjoy these delightful imaginings.

For me universal healthcare represents our move toward a better society, one where the default classification for screwy-gened people like me won't be "leech."

Filed alongside the Spoon Theory link

Today's link, via a Yes and Yes post:

‘You Look Great’ and Other Lies: what to say to someone who's sick

A-goddamn-men. I'd probably add a note about not engaging this person (aka moi) in any health care/health insurance debates if you value your scalp. But then, that's just me. So maybe a better No.7 would be to remember you're dealing with an individual, despite how easily phrases such as "cancer sufferers!" or "the typical IBD patient!" roll off the tongue. Actually, all of these tips fit under that umbrella, don't they?

Solace comes from all corners and in all flavors

Head over to Yes and Yes for a great guest post by Amandalee:

How to love your life even if you hate your work

I have a friend who’s been steadily searching for a job for the last eleven months.

Ha. This could be me. Sometimes I think my friends don't believe me when I say I search job postings, listservs, and individual institutional employment websites every. Damn. Day. Unconsciously, I think it's bullshit, too - my mind hints nastily that I should totally have a different job by now, and that I would, if only I just X and did Y and said Z or wore ABC. Yeah, yeah. Wow, shut up, brain.

Anyway, it's a good essay. I recommend it to anyone needing a new job, a creative kickstart, or an inspiring read.

Or also you can just go home and make this:

Old Fashioned Hot Fudge Sauce from The Hungry Mouse.
Just reading this reminds me of my grandma's fudgy cooked frosting recipe, and I should probably content myself with that, but honestly? One can never have too many fudge sauce recipes.

Things I didn't know.

Did you know that during the lead-up to the Civil War, New York City was poised to possibly secede? What the hell, NYC!

First South Carolina. Then New York?
(from the New York Times Opinionator blog)

“New-York will be remembered with especial hatred by the South to the end of time,” raged the Richmond Whig on April 22. “Boston we have always known where to find; but this New-York, which has never turned against us till the hour of trial, and is now moving heaven and earth for our destruction.”

The linked article includes a cool drawing of the city courtesy of the Library of Congress.

In a word:

Revisit: Rage on the Radio

A friend linked me to this video. It's from 2008 but is still very pertinent to today, especially in light of yesterday's horrible events.

Warning: this video has a disclaimer for a reason. Examples of hateful, murderous language are discussed.

From Bill Moyers Journal, this is Rage on the Radio:



Yes, words have consequences. Anyone who tries to deny that, especially someone who uses the public forum and public opinion for their own personal gain, is either completely out of touch with reality, or completely without scruple.

Not dead yet.

As seen on Yes and Yes and Jezebel, check out this NYT article:

On Road to Recovery, Past Adversity Provides a Map

The gist is that whatever doesn't kill you is actually scientifically-proven (now with real science) to make you a tougher cookie. So I'm proclaiming it collectively for folks with ulcerative colitis. We're tough as hell, and we'll take it as long as we have to, because we can. (Of course, we'll also bitch and moan whenever we want to, but since that doesn't look as good we'll just keep that on the down-low.) It's fun to be tough, especially when you're a congenitally-shaky flincher who grew up with wrists the width of toothpicks. Whatever! Tough now!

Listen to Trevor, because he knows. Or does he say stranger? I guess either way it applies to me.

Man, I forgot how much that theme music used to get in my head.

I'm a mutant!

Or maybe...a monster?



Crohn's Disease and Colitis Are Linked to Mutant Gene

The article (and by implication, the study findings, since they aren't separately dated) is from 2006, so perhaps there have refutations or expansions on the information.

If you don't want advice, don't bitch?

From the very beginning of my diagnosis with ulcerative colitis, I've noticed a consistent reaction from many people. It comes in many different forms, but the following are the most common examples.

"Can't you eat more fiber? That's good for your colon, isn't it?"

"I read in All-Organic Colonics Weekly* that psyllium seed can help with ulcerative colitis. Why don't you try that?"

"Your medication makes you feel tired? Why don't you try drinking coffee? Or caffeinated tea? Or soda? Or Red Bull?"

"You forget to take your pills? Why don't you try a weekly/daily/hourly pill box? Why don't you take them with meals? Why don't you tie your pill bottle around your neck?"

People like to give advice. I put this down to that they want to help, or to their desire to better understand the disease. It's their way of whistling in the dark. Funnily, I (usually) only hear or see this type of reaction from people who are physically healthy. They try to imagine what they would do were they in the same situation. The only problem is, they can't. You really do have to live with a chronic disease to understand how it affects every facet of your life, because it becomes part of your life and part of you. It's hard to effectively and truly imagine that kind of thing. (Maybe Dustin Hoffman could help, but I think he still might miss it a bit.)**

My problem with this? Is that in most cases, when I get this advice, I'm not looking for it. I am bitching. I'm whining. I'm complaining about how this stupid UC screws with my life and how I haven't adapted to it as cleanly as I'd like. I don't do this often, I promise. But when I do, I'm not looking for a session with a nutritionist or my gastro - I'm gagging for sympathy and hugs and humor, damn it! And most of all, I resent the implication of the advice, the You haven't thought of this, have you? It's the unspoken, quicksilver judgment that I'm not doing everything to help myself and am therefore somehow culpable.

Listen. This might be particular to me. But I READ ABOUT MY DISEASE. I do all the research I can. I try new things when I can. I think about trying new things or finding loopholes for problems when it's not possible to do them. I experiment with my diet and medications, sometimes at detriment to my health, so that I don't get too accepting, too complacent with my limitations. The things you suggest? The ones that seem so obvious to you? Guess what? They're obvious to me, too! I have thought of these things because I'm not a mindless, apathetic sack of tapioca. Sure, you might come up with something I haven't; I can accept that. But it smacks of some serious arrogance to know nearly nothing about a disease yourself and then give health advice to someone who's been living with it for seven years.

I suppose I should mention what pushed me into writing this.

Loren Berlin writes columns at the NYT about ulcerative colitis. For the most part I enjoy them; they can be short, but she talks about stuff that I think about, like giving blood or eating at Mexican restaurants. But while this column inspired my sympathies and interest, it also made me think about advice and the way we shower it on people:

Seeking hope from a support group

For one thing, my experience with online IBD support groups*** has shown me that they are usually populated with some really sick people: people whose UC or Crohns will not calm the hell down, or people who have to take some hardcore med like Remicade, or people who end up in the emergency room every other weekend. In Berlin's columns she talks about her UC being in remission and controlled with azathioprine. (Yes, I bitch about azathioprine all the time. But honestly. There are worse medications you can be reduced to taking.) These are the people she describes:

There was a gaunt, hobbled man in his late 20s who had recently filed for disability status because he was too sick to work. There was a high school girl who sat silently, her eyes glued to the floor, her jeans hanging from her hips like gunnysacks, while her mother explained the many and varied treatments that had failed to induce remission in her daughter. There was a woman seated beside me whose intestine had perforated during a layover in an airport while on a business trip.

Ouch. Very visceral. (Heh. Visceral. I'm sooo funny.) When Berlin offers exercise advice to the first man, he reacts negatively and shoots her down. She writes: He looked at me as he spoke, simultaneously resigned and defiant, challenging me to suggest something else so that he could tell me why it wouldn’t work.

Up till this point in the article, I was very sympathetic to Berlin's state. The first flush of UC is such a shitty time; it's depressing, you're in pain, there's blood everywhere, your life is upside down, you're never going to be able to eat or walk or travel normally again, you're going to die of colon cancer sooner than anyone you know, and really, a black bean and cheese burrito with hot sauce and jalapenos would be so comforting, if you could eat it without bloody craps and cramps. It sucks. But when I got to that paragraph, I thought, Huh? This isn't a problem to solve. It's a support group of people who should understand. He's bitching. Let him bitch a little. I wondered if maybe Berlin felt that in comparison to him, she was healthy. Probably not. But I know I feel downright healthy and lucky sometimes when I read posts on curecrohns at livejournal.

For the record, I don't think Berlin's a jerk or without empathy. I love that she's writing about UC in the New York Times. Yay, publicity for commercially-unpopular diseases! Here are some links to her other columns I've read:

- Surgery for Ulcerative Colitis Is a Difficult Choice
- In Fleeting Health, Moments to Savor (This one really reminds me of the way I felt following my most recent flare)
- When the Body Decides to Stop Following the Rules
- Never Able to Forget a Chronic Disease

So to get back to it, what can I say here, without coming across as resigned/defiant/overly sensitive/bitchy(too late)? Think before you advise, folks. Sure, I might be overly sensitive, and you might just be trying to help. But think about what you're saying and how your advice can come across as condescending or patronizing. As a lady with UC, I need a good bitch about it every now and again. If you've got any particular personal problems that you want to bitch about - ones that I couldn't understand since I don't live with them - then maybe you do understand how I feel. Let's get together and have a margarita. I'll try to think twice before I regale you with my personal opinion on how best to treat your bipolar disorder.

In Devil Pred news: I'm down to 20 mg of prednisone! So far, no flare relapse. I'm keeping my fingers crossed.






<sub>* Not a real magazine. Sorry.

** If you don't accept that, then there's always The Spoon Theory. I think that still works as an excellent visualization technique for someone who doesn't have a chronic disease.


*** Which might be different from RL ones, I accept.</sub>

"You may have thought, the last time you blew off work on a presentation to watch “How I Met Your Mother,” that you were just slacking. But from another angle you were actually engaging in a practice that illuminates the fluidity of human identity and the complicated relationship human beings have to time." Heh. Source:

What we can learn from procrastination

I like that. The idea of equating procrastination, something I've long associated with laziness or the refusal to bite any number of necessary bullets, with the physical and mental exertion it takes to ENGAGE* with something. That makes me feel like an everyday achiever! Also, they use taking medication as an example:

"Seventy per cent of patients suffering from glaucoma risk blindness because they don’t use their eyedrops regularly."

Nice. I wonder how regularly you need to take glaucoma drops? Anyway,it's an interesting read, with a lot of different (some less negative) takes on the idea of putting shit off.


_{*Come on, of course I went there. Red alert!}

SWEEEEEET! All right, not really.

Easily Overlooked Lesions Tied to Colon Cancer

An easily overlooked type of abnormality in the colon is the most likely type to turn cancerous, and is more common in this country than previously thought, researchers are reporting.

Money quotes:

"The results also mean it is especially important that patients take the harsh laxatives that many dread in advance of the test."

Of COURSE it is. Damn it!

" 'I think there are people who expect everything in there to be shaped like a golf ball,' [Dr. Douglas K. Rex, a gastroenterologist and professor of medicine at Indiana University] said. 'It’s not.' "

Ha. Hahahahaha.

" 'We tend to get very smug about our abilities.' "

Your ability to wind a scope up someone's ass? HAHAHA! Ahem.

Finally:

" 'The patient really has no way to act as an informed consumer,' Dr. Smith said. 'You can’t call up a facility and say, ‘By the way, is my doctor any good?’ or, ‘Tell me who the best one is.’ ' " (Jesus, how many quotation marks can I put it?)

The main point of that last quote is colonoscopies, and how we can't tell if someone's an talented 'scoper or not. You often hear about the top heart surgeon in the country, right? (Okay, maybe not in real life, or if you're not one of the top wealthiest in the country...)

As I understand it, we sign a waiver before the procedure for a reason. It's possible for an excellent gastro to screw up somehow through accident or chance. But why shouldn't we know how someone is rated, colonoscopy-wise?

That said, a colonoscopy is only one facet of your gastro care. It makes NO sense to see a doctor who A) tells you nothing, B) belittles you or C) can't seem to tell you anything at all about your UC. It's certainly possible that the more I trust someone to look out for my best interests in other facets of my care (medication, mental health, etc.), I might have an easier time under the scope.

I guess what I'm saying is CONSTANT VIGILANCE. Do some basic research, people, and know who's treating you.

(Says the girl who usually feels bad if her office visit goes over ten minutes. Perhaps I'll feel different after my next appointment.)

Living with Ulcerative Colitis - an article for the pillpoppers

Lately, people have been sending me articles about other folks with UC. Usually the focus is on people who have had extreme, out-of-control cases which result in surgery and either a j-pouch or a colostomy bag. While this is interesting to me, since it will most likely be my future, I see less articles about people who are at the same stage I am, namely ulcerative colitis that's manageable with pills, pills, pills. I said as much to a fellow chronic-diseased (heh) and she sent me the following article from the NY Times.

Living with Ulcerative Colitis - Managing Chronic Illness - When the Body Decides to Stop Following the Rules.

It's short and sweet, and it's the first article I've read where the writer/subject is still able to manage their UC with medication (albeit TONS) and diet. This is one of those diseases where we don't hear much about the manageable cases, partly, I think because while taking a bazillion pills a day (and having regular checkups, and thinking about surgery, and stressing about stress) sucks, it's not as drastic a life change as surgery.

But it still stinks, and I want public acknowledgement of the fact. Also, adoration and chocolate would be great, too! Please send all donations (corporeal and non) to peppery in Central New York.

Pain, anyone?

Courtesy of my friend Sandy, here's a thought-provoking article from the New York Times Magazine about chronic pain and medications.