Post #75: Fail better

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My strengths? Biceps and an excellent "Blue Steel." My weaknesses? Hair gel and, apparently, awkward posing.

  

Today's super fun times prompt: My strengths and weaknesses list post

 

Ha! I can't stop looking at that picture. It's like he's sexily inviting you to thumb wrestle. Getting back to business, I am a huge fan of making pro/con lists, which is really just another way of listing the strengths and weaknesses of a particular choice; so now I guess I'll make one about myself.

 

I started making the list, and I don't like where it's going (ha!). As a person or a patient, I don't think I fall so neatly into clean divisions: good/bad, strong/weak, right/wrong. I think I am constantly improving/falling behind, and I need to find new labels that encompass that movement. Thus:

 

I aspire to be:

A well informed patient. This means scouring the Internet (hellllllo, Dr. Google), scientific journals, books, magazine articles, podcasts....any resource that might offer new insights into this disease. It also means being organized for doctor's visits; keeping track of routine testing; and researching potential treatment options.

 

Patient. This is a tough one.

 

A good caretaker of my body. Even though my body doesn't always accept varied and nutritious foods, I keep trying. And I've been attempting to incorporate more exercise into my routine, even if it ups my nap time.

 

A strong medical advocate for myself. I've discussed this at length, but it's important to me to understand what is going on with my body, and what the potential benefits/side effects of any treatments might be. I seek out a lot of opinions, ask a lot of questions, and do a lot of reading, all to make the best, and safest, choices about my health. At the end of the day I am responsible for this body; sometimes, especially since my diagnosis, it often feels like an overwhelming and scary job. It would be easy (easier?) to just accept the directives of my doctor at face value, to take the drugs he recommends and ignore my misgivings, but I feel an overwhelming protectiveness that prevents me from handing the reins over to him completely.

 

Kind. To myself and those around me. Again, a work in progress; it's tough to maintain the social niceties when you are completely exhausted and depleted.  

 

I am working on:

 

Trust. Trusting myself and my doctor. I don't trust very easily. At our last appointment, he stopped what he was doing, and looked me in the eye. He poked my knee with a file he was holding, and said, quietly, "You need to trust me."

 

It's something I struggle with. I need to find a balance between blind acceptance and informed agreement, but fear is complicating and confusing every choice I make. It's not as easy as just trusting someone-or maybe it is. It's complicated. It's scary. I'm working on it. NEXT!

 

Humility. I don't know everything and I'm not the world's expert on, really, anything. Except my own body, which is why if you try to tell me I'm not experiencing something I am, I will head butt you.

 

Patience. How can this be on both lists, you ask? Well, there are good days and bad days.

 

Friendship. I have let this disease make me kind of a shitty friend. It's not an excuse; it's just the reason for my shittiness, and it's something I can improve.

 

Giving back.

 

Reaching out. This one links up with humility; I am not so good at asking for help or support. Giving it? Sure. Receiving it gracefully? Not so much.

 

 

Well, there you have it. A few of my qualities as a person and a patient. I feel like they could all be lumped together in one giant category titled: "Guess what? I'm HUMAN." but I'll stick with what I've got.

 

It's all a work in progress. Maybe what I'm getting at could be best explained by one of my favorite quotes, from Samuel Beckett:

 

 

Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.

 

 

That has been my motto for the past couple years: try again. fail again. fail better. Suceeding is not the point; trying is. Call it what you want: persistance, strength, will, or pure stubborness. Trying again (and again and again) takes heart. Failure is just another opportunity to clear your vision, shake off the dust, and start fresh-the opportunity to test and prove that heart all over again.



Post #74: Minimum blogging effort-see below

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Welcome to my day!

   

Today's prompt: Create a comic strip about your health/life/community

 

Because it took me like nine hours to figure out how to turn a word doc into a jpeg, this counts as my comic "strip" and daily health blogging contribution. Pretend like more things happened in this very exciting representation of my day.....except the only things that actually happened between these two activities were a quick blood draw and a field trip to Whole Foods.

 

Fun times!

Post #73: We are better than this

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I AM A DELICATE SPECIMEN OF WOMANHOOD WHO NEVER POOPS. Haha, just kidding.

 

Prompt: Why healthcare companies (or healthcare professionals) should use social media

 

First: the prompt. I think healthcare professionals can use social media in a positive way.

It's a fine line for a healthcare professional to walk, in terms of maintaining a professional distance and offering potentially useful information. I don't want to be friends with my doctor on Facebook (does the man who performs my colonoscopies really need to know any OTHER personal tidbits? He does not), but I do check in on another doctor's twitter feed because I think he offers interesting and pertinent information. I think social media, in terms of Crohn's patient/Crohn's professional, should be used in this model: short bursts of information on current drug trials; tweets from medical conventions; links to interesting articles. It's a way to get current information from a source who is well versed in the subject and exposed to current research and scholarly discussion. Should doctors be dispensing medical advice online? Probably not. A twitter feed will never replace a physical. But it can be a way to inform, empower, and educate patients.

 

What I really want to talk about is this article. It has me all hopped up and rant-y. The author is discussing pooping at work (zzzzz), but she includes a few choice quotes about discovering how "taboo" a topic poop is while working in her college's theatre department:

 

"Because to be a woman and to talk about poop -- about anyone’s, but especially your own -- that’s subversive. It’s weird. It’s immature. It’s inappropriate. Those same senior girls in the theatre shop taught me a lot about being a modern feminist, sometimes engaging in serious debates about what being female even means, and conversations about sex and sexuality were explicit, positive, and frank.

 

Yet it was talking about shitting that had people in the costume shop up in arms. “You guys stop -- that’s so gross,” said a male coworker."

 

And later:

 

"As human beings, there are facets of our humanity that link us. I think it’s important, living in an age like ours that preaches connectivity but breeds isolation, that we remember these links whenever we can. We all poop, male or female, and perpetuating the idea that women don’t is hurtful to us, not just as a gender but as a people. I think about it the workplace most of all, especially when I read articles on the glass ceiling.

 

Its existence is one of those pernicious realities that rears up and hits me in the face every time. When I sit there worrying about equality and about the sort of world I might one day be bringing daughters into, it’s something I worry about explaining. “You’ll never make as much money as your brother, and a lot of people will think it’s weird or gross if you have to poop at work.”

 

The point of the article is that yes, everybody poops, and yes, woman should feel free to poop in the workplace, and that as women we are still sometimes ashamed of our bodily functions, as if they make us vulnerable or weak.

 

WTF.

 

I agree with the point of the article; what infuriates me is the fact that someone felt the need to explicitly state the obvious-that women do, in fact, eliminate waste JUST LIKE MEN-in response to cultural stereotypes about women and bodily functions. Also annoying? The author seems to want commendation for her candor. Look, lady, I'm glad you're talking about poop, I really am. But I'm not going to give you a medal for writing about such a big scary TABOO subject when in doing so you are unintentionally reinforcing the same tired stereotypes you hope to dispel.

 

I can't believe this is a topic that is still worthy of discussion.

 

I feel like we can't be normal about poop. I'm not saying this as a Crohn's patient, just as a lady about town. Women are herded into two camps; we can either avoid the topic like the plague and get the vapors when it is discussed, or cheerfully discuss our bowel movements in explicit detail. There is no middle ground-we can't simply be normal about our poop. This binary divide, as presented in the article, posits that to avoid discussion is repression; to embrace it, feminism. I don't buy it.

 

Look, I'm probably not the best example of the middle ground: you are, after all, reading this rant on a blog where I talk frankly about my Crohn's disease, which by its very nature necessitates a lot of conversation about poop. But I don't think that I am a bad feminist, or a bad representative for this disease, if I don't loudly and proudly detail my bowel habits so other woman can feel less shame about their own bodies.

 

There are, as the article states, many things that connect us as human beings. But let's get real: talking about poop is not necessarily an indication of connectivity of gender equality. It's not the last frontier of conversational acceptability. Yes, we all poop, some of us more than others (hi!). But knowing that doesn't make me feel more equal, or connected to, the guy sitting next to me at the DMV. Talking about it doesn't make me brave. And focusing on it does not tear down the walls of shame; it only reinforces the idea that there is still a wall that needs toppling instead of looking beyond the wall for topics more worthy of discussion. 

Post #72: When colons stop being polite.....and start getting real

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HAHA awwww......

 

Prompt: "My life as a reality show." Write characters, plots, the set, and why people should watch

 

Is that cat picture not the most appropriate representation of some of the uniquely invasive tests we (Crohn's patients, and I guess other super lucky patients as well) get to undergo? My favorite part is that the cat looks like a Muppet head, ha.

 

I have a colonoscopy coming up in a bit, so it's on my mind. Also, I know two people who are getting colonoscopies this week. SUPER FUN TIMES FOR ALL. I'm going to try the pill prep this time (as opposed to the "drink 9 gallons of this salty expired store brand sprite tasting" stuff)-we'll see if it's an improvement, although really, the process is not meant to feel like an internal shiatsu massage. Anyhoo.

 

I dislike the prompt for today: there are no child beauty pageant contestants or Amish teens hiding in my closet; I don't race around the world for money, and if it involves math I'm definitely not smarter than a 5th grader. Most "reality" TV is exploitative and staged; some of it is painful to watch.

 

My life is not a reality show: it's just reality. No one would be interested in my exploits, and I have no interest in sharing them. I am going to share a little anecdote that illustrates exactly why my life would make a craptastic reality show.

 

Today, the plumber came over to install a new toilet. Here's the timeline of events:

• 10:00: plumber calls to say he'll be over in 30 minutes.
• 10:01: have a last BM in old toilet. Thanks for your years of trusty service!
• 10:03: Obsess about previous action. Decide I probably should have used another toilet.
• 10:04: Flush repeatedly; no detectable odor
• 10:05: Ignore stomach rumbling, hop in shower, get dressed, don yoga pants (of course)
• 10:20: plumber arrives early. Is talkative. Consider other toilet options.
• 10:30: plumber wants to talk about politics and what "my generation" thinks about the election. Are we hopeful about the future? Which party do we think best reflects our concerns?
• 10:40: plumber brings up wet vac to vacuum up toilet water. Excuse myself. Pray for thorough flushing.
• 10: 45: old toilet is carried down the stairs. Obsess about potential toilet germs leaking onto the carpet. When I confess this to the plumber, he says, "Most toilets aren't as germy as we think they are!" I think, IF ONLY YOU KNEW, cheerful plumber. If only you knew what goes down in there.
• 11:15: new toilet installed! Is shiny and new and clean. Plumber wants to do a toilet paper test to gauge flush strength. Puts in a measly three squares of toilet paper. I innocently suggest a move robust test. He puts in three more. I raise an eyebrow. Three more. Eyebrow. Three more. Eventually the bowl is filled with toilet paper. It flushes. I breath an internal sigh of relief.

 

Now, this was about an hour in my morning. Was it interesting to you? Because it wasn't that interesting to me. Besides having a super nice (and inquisitive!) plumber, most of the action occurred in my head. This does not translate into ratings.

 

So, since my reality show is a no-go, allow me to share this bit of wisdom from the plumber. As he was conducting the flush test, he asked, do you have a small glass jar? Naturally, my mind went immediately to the bad place, and I thought, dude, if you need to pee we have OTHER OPTIONS. Seeing my side eye, he told me about the toilet paper test. First, you need a jam jar or other similarly sized, sealable container. Fill it with water. Then take three sheets (squares?) of your toilet paper,  place them into the jar, and shake vigorously. If the toilet paper dissolves instantly, it is septic safe and probably not going to cause any blockages. If it doesn't, your ass needs to get some new TP.

 

The more you know (shooting star......). I'm pretty sure my one ply, recycled, non-bleached toilet paper would ace that shit, but I'm not so sure about my beloved moist wipes. We will have to see how both fare in the new, low-flow (shudder!) toilet.

 

Tune in tomorrow for another exciting (sarcasm!) installment of "Real World: Digestive Tract."

Post #71: Honesty is the (potentially grossest) policy

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Jazz hands!!

Prompt: Write about something taboo

 

Hey prompt: news flash! Pretty much everything I write about on this site, especially the bodily fluids portion of the Crohn's talk, could be considered taboo. Gas, diarrhea, colon explosions, and flatulence are not exactly cocktail party friendly topics of conversation.

 

I think the term "taboo" can be conflated with a number of other descriptors: uncomfortable, difficult, controversial, overly emotional, forbidden, disgusting. I think it's the first synonym-uncomfortable-that best describes the "taboo" nature of all of my Crohn's talk. What's been interesting for me, as I'm pretty open about describing my symptoms with their actual medical designations (i.e. saying diarrhea instead of "tummy troubles" ugh), is that people tend to respond in kind. They'll bring up their hysterectomies. They'll talk to me about their hemorrhoids, and bemoan the fact that the generic store brand of Preparation-H just ISN'T THE SAME.

 

At first, I was more circumspect, not wanting to cause anyone to be uncomfortable with discussions of my bowel habits, but to my surprise I was underestimating the over sharing threshold of my friends and family members. Granted, I'm not telling the barista at Starbucks about my morning cramps, but I also try not to shy away from being honest about what is happening to me. Look, there's a time and place for honesty about my AAC, and it's usually pretty obvious where the line should be drawn. General friends, acquaintances, and neighbors are not usually treated to a full rundown of my symptoms-that would probably make me as uncomfortable as it would make them. But if someone close to me asks the question "How are you feeling?" and I think they actually want to know, I'll be honest.

 

A lot of these prompts have really been coded questions about disclosure-who do you share with? How much do you share? When do you share it? As with anything else, I look for clues in my audience. It's not my goal to make anyone feel discomfort. But I think it's important to note that at least in my experience, my honesty has been rewarded in kind. I feel that my friends and family members are more likely to tell me things, potentially personal things, about their health. Keeping in mind that this is a group of people who have never shied away from bathroom talk, I still think that some kind of embarrassment barrier has been removed. That is great. If my AAC talk initiated any kind of de-stigmatizing effect in terms of talking about growths, lumps, bumps, hemorrhoids, or stomach concerns, all the better.

 

So if you come over for Thanksgiving, I won't bring up my AAC unless you ask. But if you ask how it's doing, be prepared, because I'll tell you.

Post #70: I never call BS on ranting

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Won't you come join me? Pull up a chair, plenty of room.

 

Le Prompt: Call BS on something. What's something that is just ridiculous?

Well what do we have here? Another prompt that requires RANTING? OK!

 

 

I think this list requires a rating system; let's say 1-5 pooping cows. Obviously, the more pooping cows, the more bullshit. To the list!

 

5 Cows: Plug your nose holes

 

Doctors who say they can "fix" or "cure you

I was trying to figure out where my extreme distrust of gastroenterologists came from, and one of the reasons that I came up with is that pre-diagnosis, in the IBS days, 95% of the doctors I visited, be they gastros, internists, or even naturopaths, assured me they knew what was wrong and they knew exactly how to fix it. They had ideas, and plans, and a confident air of expertise. They all failed.

 

Maybe I wouldn't have raised my hopes so high if they hadn't been so sure of their ability to correctly diagnose and treat my problem, but every time I was left in a deeper and darker hole than when I started. One gastro, after prescribing 4-5 medications (bear bile, anyone?) finally looked away from the computer screen, propped his elbows on his knees, and said, "Well, I'm out of ideas." So what should I do next? "Maybe go see a different gastroenterologist." Thanks! And the saga continued.

 

Now, I don't think any of these doctors would have fed me the same lines if I had a Crohn's diagnosis-they're not quacks. But one of the reasons I like my current doctor is that he has never claimed to have all of the answers. He said in our first meeting that treating Crohn's is an ongoing process, and it would probably take some time to find the right medication combination that would give me the best symptom control. And that has always been the goal: symptom control, remission, quality of life: actual potential positive outcomes with this disease.

 

I'm still working hard to trust him, even though he has never tried to sell me a promise I know, deep down, to be false. It is, like the Crohn's, an ongoing process.

 

4 Cows: Grab a shovel!

 

Medication side effects that are worse than the actual disease

For serious. In the early days of taking one medication, I had this actual thought:

 

Untreated Crohn's is preferable to this drug.

 

Let that sink in. Crohn's is bad enough, but add in a laundry list of super fun side effects and the party JUST KEEPS ROCKING. Now, nausea and diarrhea (ironic, no?) are one thing, but then add in the really scary potential side effects: lymphoma, heart failure, fatal infections.....it's enough to make you want to crawl under a rock and suck your thumb. Beyond worrying about cancer or catching pneumonia, there is the great known/unknown conundrum. I know how crappy I feel with untreated (and, sometimes, treated) Crohn's-how exactly, and in what ways, will I suffer with new medications A, B, or C? It's never an easy decision to decide to cast your hopes on a medication that will potentially (and in my experience, frequently) make you feel worse than when you started, hurting you as it's "helping" your disease.

 

3 Cows: Fertilize those flower beds!

 

Colonoscopies

In the world of Crohn's, you'll hear this a lot: colonoscopies are the GOLD STANDARD of diagnosing and monitoring the disease. It's the best way to know what is going on up in your digestive business; sure, an MRI can show inflammation or strictures or obstructions, but nothing beats getting up close and personal with your mucosal lining with a camera attached to a giant hose. Here's the deal: WHY HASN'T ANYONE FIGURED OUT A BETTER WAY TO DO THIS?! Yes, there are those little pill cameras you can swallow, but it's not the same.

 

Dear science: first, focus on the cure for Crohn's thing, that's muy importante. And while you're doing that, I guess find better Crohn's treatments with fewer side effects and less toxicity. But if you have time, and want an extra credit project, can you work on creating a less invasive test to scope out my AAC? Maybe a "Magic School Bus" style shrinking ray for my doctor and a tiny colon submarine? Thanks.

 

2 Cows: Collect those Rocky Mountain oysters!

 

Insurance

Having to worry about getting and maintaining coverage if you have a pre-existing condition?  Let's work on that.

 

1 Cow: Mooooooooo

 

Fatigue.

I really, reallllllly have to call BS on Fatigue. I know it's a symptom of my disease, and actually of some of my meds, but I would like to get through the day without having to take a nap. I would like to, say, attend a yoga class (where I worry about colon explosions a lot of the time, btw) and know that I have enough energy to complete the class AND stay awake for more than an hour after it. It's frustrating to only have energy in fits and starts.

 

All of the things on this list are bullshit worthy. You know what is NOT bullshit worthy? The fact that this is my 70th post. Holy crap. Through flares, brief periods of remission, colon explosions, new meds, old meds, and now a month of daily blogging, my ass (and my AAC) has been writing post after post. Thanks for reading about the goings on in my colon, and I hope your own AACs aren't angry at all.

Post #69: Don't call me Morty. Or Al.

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Thanks for taking your shoes off kid.

 

Prompt! Anatomy Post. Re-label an anatomy picture with new names/descriptions for your body parts.

 

There was another prompt, but I felt compelled to talk about this one. I know that technically, on this blog and in real life, I have renamed my colon AAC. There are a few reasons for this:

 

1.) I've talked about this before, but I was sick of people asking, "how's your butt?" (or as one family member called it, my "mad asshole").

 

2.) I needed a catchy name for this blog that didn't include the words butt or asshole because, well, do you want a blog called "Asshole Central"? That could be about many different things besides Crohn's.

 

3.) AAC is good shorthand for Crohn's + inflammation + IBS +  weird reactions to food + general gut crankiness.

 

Now, I'll have friends/family members ask, how's your AAC? It's simpler that way.

 

I read other IBD blogs, and many people have re-named their colons with people names. I think that's stellar, but it doesn't track with me. Yesterday, I tried to express how blogging is an individual endeavor, and how there is no one size fits all format to expressing personal experience. Some people put pictures of themselves on their blog (and use their real names!); some have FB/Twitter profiles and connect with people that way; some name their colons. I don't do any of those things, and that's ok too. I abstain because I don't think any of those things would reduce my stress or give me a more positive outlook on Crohn's.

 

I haven't given my colon a jaunty moniker because doing so wouldn't change my relationship to, or experience with, this disease. If my colon was named Morty, would that ease my symptoms? Probably not. Would talking about my colon using an old man name (nothing against it, love the name!) be easier? Definitely not. Would using the name add a certain levity and joie de vivre to my blogging? Maybe, it's still not going to happen.

 

I assume that the reason people choose to name their colon is that putting a face, if you will, to the organ makes symptoms seem less scary and daunting. Saying "Morty is acting up again!' is a lot less frightening than saying "Wow I was in a lot of pain today!" Maybe having a Morty, or a Jason or Becky or Dr. Evil or Batman, allows people to separate from the disease. Maybe Dr. Evil is making you miserable, not Crohn's. It's his fault that you're sick-and it's comforting to assign blame to anyone else. I suppose naming your colon, like naming you lady parts, could be an act of affection, but I doubt that's why so many colons wear name tags.

 

What I do think the naming process probably helps with is connecting your colon, and therefore your disease, to other people. I think naming your colon allows other people to be more comfortable with your disease, and more likely to discuss it and ask questions. Talking about Crohn's in an abstract and humorous way lessens the severity of the condition, and therefore people's discomfort about the topic. This is great, and if having a Morty lets your friends and family talk about your disease in a more playful or lighthearted way, then I'm happy for you both. But just like I don't call my vagina "Her Majesty the Queen", I don't call my colon by any other name. I think doing so pokes fun at something that isn't really that funny to me.

 

I would never go to the doctor and talk about my colon in the third person: Morty is having problems with painful gas! Morty is having a flare! I can say the name: COLON-and I can say the disease-CROHN'S. I think that it's important to use the real names for symptoms and anatomy associated with this very real disease process. I understand this is a pretty humorless stance, and also a semi-hypocritical one, as technically I do have an AAC. But that designation is more due to laziness than wanting to make my colon, or Crohn's in general, more shiny happy fun times.

 

Look, I think it's awesome if naming your AAC helps you be more comfortable with your body, or makes you laugh, or even makes your friends/family more comfortable talking about your Crohn's. Anything anybody can do to make ANY OF THIS a little easier is great. For me, personally, it feels weird. Just like I like my doctor's offices to look like......doctor's offices, I like my anatomy to be called by the name you'd find in a textbook. Call me old fashioned, call me boring, call me the killer of all things fun-just don't call me Morty.