Well, Hello Sailor!

So I says to Mabel, I says.....

 

 

So in case anyone still reads this blog, you might have noticed I took a tiny break, just a few days off to relax, kick back, eat some Milano's, watch a little Lifetime....oh right. I TOOK OFF A FUCKING YEAR. I avoided this blog for a year, and now I'm back and swear-ier than ever!

 

Sorry about that.

 

The absence, and to a lesser degree, the swearing.

 

Things were good, things were bad. I was happy, I was sad. I met a cad, his name was Vlad. I could go on like this for days (don't be mad).

 

As is so often the case with my colon, I had good months and less good months; during the good months, I promptly forgot about the previous months and went about the daily business of living, and when things got worse I would actually be a little surprised, as though I hadn't experienced the exact same delightfully life-inhibiting symptoms 4 or 6 or 8 weeks before.

 

I'm sure this is some complex coping mechanism, or simply self-sanctioned colonic amnesia. Either way, each time things take a turn for the worse, it's like a little betrayal, instead of something that I should definitely be expecting four years (!!!!) after my diagnosis.

 

After failing two different blood tests AND a super fun stool test (and by failing, I mean overachieving in the inflammatory markers department), I'm going to change my meds around this week in hopes of turning down the drama in my AAC. I would say "with the goal of re-inducing remission," but remission is a word that I'm not really comfortable using with my Crohn's. Remission seems to indicate a cessation of symptoms, a return to normalcy, a complete reversal of disease. I know that's a very black and white way of looking at it, but since I was diagnosed I've never had that kind of clear cut difference between disease and.....not disease. I just seem to have varying degrees of disease activity.

 

It's like a pot simmering on the stove. Sometimes the heat gets turned up and the pot boils over, and sometimes it just simmers away in the background, but no one ever turns off the stove.

 

I was at the eye doctor the other day, dealing with some fun inflammatory eye problems (thanks Crohn's!) and I was asking him if the increase in medication might help with the inflammation in my eyeball. His response:

 

"I think it might. You know, some people are just really susceptible to inflammation. Inflammation from your Crohn's, inflammation in your eyes, it's all just inflammation. You just have a lot of inflammation going on, so lots of things get irritated. You just have a lot of inflammation going on. Inflammation inflammation inflammation inflammation inflammation inflammation inflammation."

 

Just kidding about the last part, he didn't really say it, it's just that after the first part I kind of tuned him out and he sounded like that teacher in Peanuts. Also, thanks for the pep talk Doc! This is why I don't feel guilty for stealing eye drop samples from your exam room.

 

I had a really good two months before April (and now May). Even a few good days will lull you into a false sense of security, so imagine what two months will do. All of the work you do in those good months, all the progress you make and the positive steps you take in your life, grinds to a halt. I was beating myself up the other day for not pushing through this kind of inertia that takes hold when I'm not feeling well, and I realized that along with the symptoms comes exhaustion, a kind of exhaustion I just settle into now. I just hole up in my bed with my cell phone, good magazines to take with me to the bathroom, six different layers of blankets (for the night sweats, when I get too hot and then when I freeze because I'm covered in sweat and have kicked half of the blankets off the bed), and an easy sense of resignation.

 

That's what I'm working on now. That's what I've been working on for the past year, when I haven't been blogging. How do you plan a life around an unknown quantity of good days, and how do you push through the inertia, the resignation, the self-defeat that so easily invades the bad days?

 

I haven't figured it out yet, but I'm trying.



Post #81: The cookie conundrum

But also Crohn's, Cramps, and Constipation!

 

Yeah, no more enforced blogging! I have to say, that really sucked the fun right out of writing a Crohn's blog, ha.
 
Before I forget, it was great to see too IBD related articles on one of my favorite websites: read them here and here.
 
I'm watching Sandra Lee's Taverns, Lounges, and Clubs (TLC-get it?! get it??), otherwise known as the Sandra Lee alcohol appreciation hour. This chick loves her booze. You have to appreciate someone who managed to make drinking her JOB.
 
Back in AAC land, the tapering off steroids continues, as does the increase in symptoms. Shocking, I know, but I keep putting all of my hope in being able to maintain steroid-free remission without having to take new and scarier drugs. It's like watching the same movie over and over again and hoping for a different ending. Complicating the issue is the fact that I continue to eat as though I'm on a full dose of steroids. Smart! As I approach my one year diagnosis anniversary (for my one year anniversary, I'll be registered with Charmin-just kidding, I still HATE THOSE ADS), you'd think that some of the lessons learned in the preceding months would stick: fatigue is unpredictable. Decrease in steroids=increase in colon explosions. DAIRY IS NOT YOUR FRIEND.
 
I guess I'm a bad Crohn's student, because I keep having to take, and fail, these tests again and again. The desire for normalcy, represented nowhere more powerfully than on the plate, is constantly testing my resolve. For every time I avoid plunging my face into red velvet cake (yesterday afternoon) I go out and think that suddenly I can magically eat lettuce (yesterday night). I forget about all of the cramps and bloating (this morning) and really want a cookie (right now). It's a continual cycle of frustration and remorse.
 
Welcome to the cookie conundrum: the reason that eating is so fraught with fear and suspicion. If I do eat the cookie now, I will probably be sick tomorrow morning, thus interfering with Yoga, which is my favorite fitness center class of them all. If I'm extra sick in the morning, and still do yoga, I will have even less energy tomorrow afternoon, which means a longer nap and a disrupted sleep schedule. Riddle me this: how can you possibly plan two moves ahead when your colon could decide at any moment to throw a wrench in your plans? You can't.

You can't control variables like fatigue, and even if you only eat "safe" foods you still might end up feeling sick. One of the many annoying truths about Crohn's: a cookie is never just a cookie-but sometimes it is. I can plan five steps out to accommodate eating one of my favorite "normal" foods when I'm out with friends, and still wind up spending my morning in the bathroom. Conversely, I can think, screw it, eat two cupcakes, and lift weights with the ladies at 9am. You never know.
 
Basically, even if you make (smarter) choices that lesson the likelihood of symptoms, there is no fail safe diet, or ritual, or exercise or pill, that will prevent them all together (or at least, any that I have found). I'm still trying to wrap my head around that reality. I'm used to having a more logical relationship with food: eat well, feel well. Eat fried chicken, feel like crap. Eat chocolate, may as well have taken a laxative. A year into this Crohn's business and it's still hard to accept that these rules don't necessarily apply anymore. Sure, the fried chicken thing is still true, but a cookie didn't use to have the power to make/break my daily plans.

Maybe that should be a motto contender for this year:

It all starts with one cookie.
 
or:
 
C is for cookies, BUT COOKIES AREN'T FOR ME.
 
or:
 
JUST EAT THE DAMN COOKIE-you'll probably have diarrhea anyway.

or:

Take a bite of that cookie-do you feel lucky? WELL DO YOU?

 
I'll have to tinker with those.

Post #80: Sweatin' with the oldies

Um, I'm not going to put the NHBPM logo at the top b/c I kind of failed at that. Oops.

Elephant butt!

Hello blog!
 
Here I was at the beginning of the month, all excited to join in the daily blogging fun....and it was fun, until it started to feel like work. Honestly, I don't like thinking about my AAC in such targeted, specific way EVERYDAY. I felt like all of the prompts were getting all up in my business (I mean, I guess that's the point-introspection and what not) and, being the non-confrontational sort that I am, when something gets all up in my business I walk away. Thus, the blog holiday.
 
The prompt for today is about one thing I would like to accomplish in 2013. I have many goals, some health related, some not, but what I'm working on before the end of the year is coming up with 2013's motto. A good friend of mine from college has a tradition of designating a yearly motto instead of writing out resolutions. I heart this idea for many reasons: having a guiding principle instead of super specific goals allows for latitude, and decreases the risk of disappointment and failure. It provides inspiration throughout the year, and it becomes a touchstone of sorts. My motto for the last few years has been the same, and I'm looking for a change.

For the past few weeks, I've been working out at a local community center, taking group fitness classes with descriptors like tone! and sculpt! (JAZZ HANDS!) With the exception of a truly horrifying Zumba class (It was not pretty. I looked like a newborn calf, all spastic movements and flailing limbs. I didn't fall down, but I did kind of want milk afterwards, ha), I've been enjoying myself. The women in these classes-40, 50, 70, 80 years old-bust out some serious moves. They use heavier weights then I do, and out bend the shit out of me in yoga. It's simultaneously humbling and aspirational.

It should surprise no one that I am a back-wall exerciser, the kind of girl who wants to stay away from the mirrors and have a convenient wall to lean on when I get out of breath. The fellow wall leaners have adopted me into their group, and are now pressuring me to take aqua-aerobics. One of them works out in a cashmere sweater, insanely fashionable eyeglasses, inter-locking "C" Chanel stud earrings, and shiny pink lipstick. Today, after some hard core lat work, she plunked down her weights and proclaimed, "Well, just forget it!" and leaned on the wall. All that was missing was a freshly lit cigarette and a dramatic eye roll. I bet she drinks martinis and used to sneak out of 6th period. She's kind of awesome.

The teacher walks around and corrects/harangues people, and after a particularly taxing set of some sort of plank-mountain climber hybrid torture exercise, I was daintily perspiring (hahaha) when I saw her well toned calves out of the corner of my eye (I may have been laying on the floor). Thinking she was going to nudge me with her foot and tell me to get my ass in gear, I huffed, "Just taking a break! Going to start again! Starting right now!" She smiled at me and replied, "Look, you're just starting out and you're doing great. You don't eat an elephant in one bite. Keep it up!" and walked away.

My first thought, as it forced it's way through my frazzled, exhausted mind, was: WTF? Who eats elephants? Next, I had the ridiculous mental image of someone sneaking up on an elephant with a fork in hand and I snorted. Luckily, the wall leaners are an accepting sort, because I must have looked particularly attractive at that moment, passed out beside the stair-stepper and laughing at imaginary jokes in my head. Moving on.

I got through class without vomiting (yeah!) and as I was driving home, I kept turning the phrase over and over in my head. You don't eat an elephant in one bite. Besides being kind of a disgusting prospect, I like the notion of seeing the enormity of the task at hand and just, um, digging in. Starting somewhere. Making progress but knowing there is much work ahead of you. Steeling yourself for a long, slow process of change; accepting that it may be weeks or months before you see the benefits of your hard work.

2012 has been all about damage control and seeking safety. I feel like I've been plodding along without direction, afraid to commit to a plan and risk upsetting what little peace I have attained. It's not that I haven't been doing the work-I'm just working without purpose, and accepting my lack of progress as the price I pay for maintaining the status quo.  I don't know what 2013 will bring, but I do know I need a kickass motto to help me steer towards a different place. This new motto-you don't eat an elephant in one bite-is a contender. Perhaps not PETA approved, but a contender nonetheless.

ps: post 80? whoooooo

Post #79: Thanksgiving (blogging) leftovers

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

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(yeah, about that....)

 

Haha, turkey Fonz. Heyyyyyy.

Awww, sorry neglected blog. I was a little ragey on Wednesday, and then Thanksgiving happened, so now here we are.

 

I cooked a lot of delicious things for Thanksgiving, and then I ate them. That right there is progress, my friends. I started tapering off my steroids this week (sigh), and I was concerned about indulging on Thanksgiving, but I decided I wanted to be a normal person for the day and I ate what I wanted. Today, I was about as sick as I expected, and took a looooooong nap. I'll take it easy for the next couple days, but it was exciting to eat pie. Totally worth it.

 

Now! There are an assload of prompts to catch up with, but I think it counts as sticking with the whole monthly blogging thing if I do a 4-in-1 post, no?

 

Les Prompts:

 

1.) Write about alternative treatments/regiments/medicine. What do you support? What is crazy?

2.) Create a new technology related to health

3.) Write about change

4.) What's something your doctor taught you, or you taught your doctor?

 

LET'S DO THIS.

 

1.) Ok prompt, let's chat. If you call something an "alternative" treatment and then ask what might be "crazy" about it, you're setting up a dichotomy between Naturopathy and Western Medicine that I don't enjoy. Honestly, there are more CRAZY side effects from the prescription drugs I take than from the vitamins and shizz my naturopath gives me. Nothing "alternative" has ever made my hair fall out. I'm just saying.

 

Now, there are some admittedly out there treatments for Crohn's that could be described as alternative-parasitic worms, anyone?-but they're also being studied with increasing frequency by the mainstream scientific community. Conversely, Western Medicine, the non "crazy" one, is doing fecal transplants-let that sink in for a minute-to combat conditions like C. Diff. So, worms or donor poo? I think they might be tied in the wild and wacky "alternative" column.

 

I support care that treats disease and optimizes health with the fewest toxic side effects. I'm not going to make a sweeping generalization about Crohn's patients, but in my case I need mainstream drugs to control my symptoms, and I add on supplements suggested by both my gastro and naturopath (as in, they both tell me to take the same thing. B-12, etc.). 

 

I would also like to note that YEARS before I was diagnosed with Crohn's, a naturopath looked at my blood work and announced, "You have a chronic inflammatory disease that is causing you to continuously lose small amounts of blood. You need to go see a specialist." My primary care, and my gastros for that matter, had all looked at this same lab results, but since the values weren't marked in red, they assured me that everything was in the "normal" range and said that they didn't see evidence of a specific problem. I think the naturopath was able to draw conclusions (the correct conclusion, as it turned out) from the exact same blood work because she looks at the patient's total health, through a holistic AND scientific framework. Did she tell me I had Crohn's? No. Did she listen to my story, consider it carefully, and discover a pattern the other doctors either dismissed or missed? Yup.

 

Bottom line: there are benefits to both traditions, and it isn't fair to write off one as being wacky or "crazy" without trying it out first.

 

 2.) If I were to create a new technology related to Crohn's, I would invent a toilet paper that turned a color if it detected trace amounts of blood. This would be useful, because sometimes you can't really tell (I mean, sometimes you can, ahh). It's important information to know, and the tests currently available to check for it are gross. Ok let's be one with this one.

 

3.) Change......I'm not so good with change. This is a whole post (hell, a whole blog)-not something I can really discuss in a few sentences. Suffice it to say, as I approach my 1 year diagnosis anniversary, it's been on my mind a lot: how much things have changed, how they might continue to change....

 

4.)  Which doctor, prompt? I'll break it down:

 

Current doctor:

-How to be a (better) educated consumer of health information and how not to psych myself out with information overload.

 

Past doctors:

-You know your body best, and it serves no one if you don't share this knowledge.

-Not all doctors have to be your BFF, but if they are disinterested or dismissive they are not going to be the best caretaker of your health. Keep looking until you find someone you can work WITH.

-Write down your questions, because some people (*raising hand*) get flustered/emotional/forgetful during doctor's appointments.

-If you want something, ask for it (and keep asking for it).

-Ultimately, you are in charge of the details. Don't expect your doctor to remember/keep track of them all.

 

Ok! That's enough. There is about a cup of stuffing left, and I need to go take care of that, ha. I hope everyone had a great Thanksgiving and spent quality time with friends, family, and awesome pie.

Post #77: I think I failed the support group quiz

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Why is this pic under "support group clip art?" Perhaps it's a group for big 80's hair and questionable facial hair decisions.

 

Today's prompt: Questions I have for other patients

 

Oh prompt. I have so many questions! It would be easy to ask these questions at, say, a gathering of other Crohn's patients. Like a support group! (sound of running down a hallway and slamming a door).

 

Ok, I'm back. I don't know why I am so adverse to the concept of a Crohn's support group. It has all of the things I say I'm searching for....but the idea freaks me out. I will happily share my concerns and questions with friends who have absolutely no idea what I'm talking about (TNF blocker whaaaa?), but ask me to sit in a room with 10-12 other people experiencing the same symptoms and possibly taking the same medications and I will cling to the door frame and refuse to leave the house. I write a Crohn's blog, but I am hesitant to talk about Crohn's in person. COMPLICATED!

 

To try to sort out my feelings about support groups, I googled "are you ready to join a support group?" which was like the 10th most popular answer after "are you ready to have a baby" and "are you ready to quit smoking." Here are some questions, adapted from here:

 

Do you enjoy being part of a group?  If that group bakes cookies and wears yoga pants and       watches "The Breakfast Club," then yes. If I am required to talk about FEELINGS, then no.

 

Are you ready to talk about your feelings with others? See above.

 

Do you want to hear others' stories about their Crohn's? No. Maybe. Scary. Run away!

Would you like the advice of others who have gone through different Crohn's treatments? Yes.

Do you have helpful advice or hints to offer others?  No:(

Would reaching out to support other Crohn's patients make you feel better?  Sure?

Would you be able to work with people who have different ways of dealing with Crohn's? You mean people who shun drugs and only eat south growing tree moss and think I'm DOING IT WRONG if I don't follow their strict moss recipes and refuse to CURE MYSELF with their forest based diet? Then no.

Do you want to learn more about Crohn's and treatment issues? Again, maybe. Scary. Run away to the forest for post group moss collection!

Ok! After taking this quiz I sense some ambivalence about the support group experience. Actually, let's call it what it is: fear. I am afraid of making the existence of my Crohn's any more real than it already is (i.e., by talking about it), or seeing someone who is struggling with advanced disease. That would be kind of devastating. I don't want to see what may or may not be in my future.

At some point, I think it would be a healthy thing for me to face my fear, put on my grown up lady pants, and make some connections with people who are like me-who have Crohn's. If/when I do so, here are some questions I would ask:

1.) How the hell do you hold down a full time job and deal with an unpredictable colon?
2.) How the hell do you hang out with babies (germy, germy babies) without getting sick? I always get sick from baby germs.
3.) How do you turn off the constant worry?
4.) What are your tips for being a better family member/friend when you feel like crap all the time? 
5.) Have you tried tree moss? Was it helpful? (kidding!)
6.) What do you think of delaying a taper off steroids so the decrease in dosage doesn't coincide with Thanksgiving, which would allow you to eat a greater variety of foods?

That last one is topical, but the rest are pretty timeless. Maybe someday I'll get a chance to ask them, in person, away from this blog. Face to face.



Post #75: Fail better

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

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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

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

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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 #70: I never call BS on ranting

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

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.

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

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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.

Post #68: I am not FB friends with my AAC

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 



You went out for "thirsty Thursday" with your friends?! You have opinions about the election?? GET IN MY PANTS NOW.



Today's prompt: Should people post about their (or loved ones) health on Facebook? Why/why not?

 

Oh, Facebook. Home of sunny vacation pictures, carefully staged food photo ops, and babies of varying degrees of cuteness.

 

I was a latecomer to the FB game; I joined after the initial frenzy, and as a result I have a reasonable number of "friends" (i.e. not over 500). I can't imagine broadcasting news of my AAC to even that pared down list, let alone a collection of hundreds of virtual strangers. I'm not going to judge people who do post about their IBD, but I am not comfortable talking about mine on FB. I don't even "like" Crohn's organizations or blogs. I don't want people to know that way.

 

Here's the deal: FB is mostly about three things. First, it's where you go to show how awesome your life is. People post engagement pictures, wedding pictures, new baby pictures.....FB has replaced old timey life cycle announcements in newspapers (unless you are super fancy/loaded, in which case you will always have the New York Times wedding section). In my baby book, my mom cut out my birth announcement from the local paper; that was how her friends knew I had been born. Today, she would post a picture of me in my little hospital blanket and baby hat on facebook minutes after I was expelled from her womb.

 

Second, Facebook is also the home of the "humble brag." I was reading an article in a lady magazine when I first encountered this term, and it's so freaking applicable. A few examples:

 

1.) My back is so sore! Loading those pallets of diphtheria vaccines for Doctors without Borders can sure tire a girl out!

 

2.) Marathon training is hard, but I'm doing it for cancer research! It's a good thing my new boyfriend Steve, the doctor, is there to help bandage my wounds and rub my bloody feet. Thanks honey!

 

3.) Wow, my new job is hard. I don't have time for a social life, but I guess traveling the world for the Gates Foundation and ensuring that all of the earth's children have access to clean drinking water is worth missing a few happy hours.

 

People have become MASTERS of the humble brag on FB; it's natural to want to share the details of your fabulous life/job/relationship, but you don't want to be an asshat about it. What you realllllly want, of course, is validation about your (awesome!) life experience in the form of a virtual thumbs up.

 

Finally, FB is the place to demonstrate your highly attuned social consciousness or offer biting tidbits of social commentary. It's the new place to show off your smarts. This became glaringly apparent during the elections, when suddenly every single FB friend turned into Thomas Friedman, offering solutions to fix the economy and bon mots about the quirks of the American electoral process.

 

So. If FB is about sharing awesomeness or humble-bragging or proving that you read stuff, how exactly does Crohn's fit into that mix? Here are things you will never see me post on Facebook:

• Going in for my colonoscopy-who spent 18 of the last 24 hours having explosive diarrhea? THIS GIRL!
• Just got back my weekly blood work-I am the inflammation queen! #blooddrawallstar
• At least all of this medication related hair loss is making my hair easier to style! (SMILEY FACE)
• Had to cancel lunch plans -sticking with toast and Gatorade today! Whooooooo!
• 3 doctor's appointments in one week? How did I get so lucky? AWESOME SAUCE!

 

Ok, I don't really talk like that, but you get the point. These are not momentous life events that I want to share-these are frustrating, everyday occurrences that don't merit posting on the FB wall of awesomeness. Unless my AAC wins a Nobel Prize while vacationing in Tahiti with Colon Firth (ha!), you're not going to hear about it.

 

When I first got diagnosed, I briefly toyed with the idea of making some grand announcement on FB, because I knew my friends and "friends" would offer kind and supportive words, but ultimately I decided that this was one thing I was going to keep private. I choose to do my over sharing on an anonymous blog. A few friends know about it; if they want to know how my AAC is faring, they can come here. If not, they can read my status updates about the election. It's their choice, and that's important.