Post #117: I could medal in this kind of running (or at least place)

Different kind of running.....
Confidential to the lady in the grey spandex-you might want to invest in some different pants because I CAN SEE YOUR REPRODUCTIVE ORGANS geeze. 

Hello again blog! Welcome to 2014! Happy New Year to everyone who reads this blog and their colons/various digestive apparatuses. 

I could go in a lot of different directions in this post; how it's my two year diagnosis anniversary; how it's been a full year on my scary injectible medicine; how various colon attacks ruined both Thanksgiving AND my birthday dinner. 

However, this is a blog post about how people don't know shit about Crohn's (see what I did there? eh? eh?). 

This week I volunteered to help cook a meal for an area non-profit, and I ran into a family friend who I hadn't seen in a decade or so. She and her family were a definite fixture of my childhood; her daughter and I got into all kinds of mischief at various holiday dinners, and amused each other while the adults were being boring by sneaking away to the basement and pretending we knew how to play pool (I still don't). 

I was more than happy to see her, and we shared cell phone pics of our family members while dressed in ugly borrowed aprons, surrounded by huge vats of boiling water. Then came the inevitable question: what have you been up to? 

I kind of came to the decision that I would not lie about my current situation with people close to me, and since this woman had known me since birth I didn't feel the need to rattle off the jobs/hobbies/volunteer work I was into two years ago, pre-Crohn's. I told her I had been diagnosed with Crohn's and I wasn't working that much. 

Family friend (FF): Crohn's? What's that? 
Me: Oh, it's a disease of the digestive system. (blank stare) An inflammatory bowel disease? 
FF: Oooooooh ok. So, you get the runs a lot? 

Let's pause. 

OH HOW I HATE THAT PHRASE. Having "the runs" sounds kind of comical; I picture a comedian with their knees fixed together, kind of crab walking heroically toward the bathroom. Subtext: they probably won't make it, and that's funny! It's funny to lose control of your bodily functions in public! There is a cinematic tradition of using poop as a comedy prop, whether someone gets turned upside down in a port-o-potty (see: Jackass, the movie), clogs the toilet of a potential date (see: Along Came Polly, a thousand others), or just completely loses control of their bowels all together (see: Bridesmaids). In the last two examples, the characters have "the runs" due to food poisoning. They're sick, but it's still funny when they humiliate themselves. I guess I never appreciated that distinction before I got to deal with an AAC on a full time basis; I certainly laughed along with everyone else in the movie theater, but now it seems like kind of a cheap laugh, and one that hits a littttttle to close to home. 

Beyond any comedic connotations, "the runs" is just a coarse phrase. It's one of those cases where the word that describes the act is equally as disgusting or off-putting. Maybe it's because I use the word so much (to my friends, family, physicians, mailman....) but the word diarrhea doesn't gross me out the way "the runs" or (even worse!) "the squirts" do. At least "diarrhea" is somewhat respectable, and compared to the other terms, it's downright dignified. And when it comes down to it, I think that's what pisses me off the most: giving what to me (and a lot of other people) is a painful, unpleasant, occasionally debilitating condition a nickname is not respectful. It makes light of a situation that may be funny in the movies, but isn't funny in my real life. 

Back to the conversation: 

Me: Yeah sometimes. That's a part of it. 
FF: Well, that's too bad. 
Me (not really wanting to continue the conversation): Yup. 

Argh. Part of me wanted to justify just how much more Crohn's is than just a bout of diarrhea now and then: but wait! Don't you want to hear about the daytime pain? The night time pain? The endless doctor's appointments? The invasive tests? The dehydration? The malnutrition? The side effects from the meds? The sore joints? The night sweats? The hair loss!? I CAN TELL YOU ALL THE WAYS THIS DISEASE SUCKS!

But it wasn't the time or place, and I'm not the official ambassador for IBD. It's just frustrating to have someone reduce your experience to a piece of slang that doesn't begin to encompass the day to day struggles of Crohn's. Today, for instance, I ate peas for the first time in like 6 months and worried about that and had a lot of bowel movements and now I have a pain in my right side and I'm tired. And this was a good day! I ate out at a restaurant and ran errands and went shopping, all while keeping in mind where the nearest bathroom might be located. 

The last time I ate out and went shopping, a week ago, I was in the middle of Crate and Barrel when I felt that special feeling (cold sweat, cramps, pain) and knew I had about 2.5 minutes to make it to a bathroom or poop on the showroom floor. I did indeed have "the runs" and I did have to actually run to a bathroom and no, it wasn't funny, even a little bit. 

I know there is no succinct way to express this reality to people. I get it. 

If nothing else, what I take from this conversation is the desire to be more open and receptive when other people try to tell me things about their lives. To not assume I know all the answers, and to try not to belittle or reduce their experiences in any way. I'll try not to be as ass about whatever they disclose, and I'll let them tell me what it's like. 

Which I would have done with this family friend, if I thought she really wanted to know. 

Post #116: My holly jolly colon

Get in my face, you delicious little sugar grenades. 

Late night, 3 a.m. Awake and in pain. Sound familiar? This, my friends, is the worst kind of SSDD. 

I drenched the sheets with sweat. I remember, when I was trying to lay perfectly still so that I wouldn't move and make the pain WORSE, that I seemed to be sweating between my toes. Pain twisting my insides, shaking, forcing myself to take slow, measured breaths, failing and hyperventilating a little, and this is what pops into my head!?

Toe sweat: is that a thing? Do you sweat between each toe? Are there sweat glands down there? Is it weird to have sweaty toes? I mean, I always think of feet being sweaty, but not the toes, really. Is each little space between them like an individual armpit? Hmm. 

All weekend I baked (6 different kinds of cookies, in your face MARTHA), and then ate cookies and made myself sick. After a particularly sugar filled binge yesterday morning, I ate a veggie filled lunch to compensate. So, sugar or carrots? Cookies or zucchini? Peanut brittle or celery? What exactly set off my AAC? Hard to say. 

Not that it matters, whether it was the cookies or produce, when you're in bed at 3 a.m. sweating between your toes. 

But oh, that familiar holiday food paradox. I'm talking about the way the holidays (I'm looking at you Thanksgiving and the entire month of December) trick you into thinking that for some reason you DESERVE to eat real food during this specific time period, as if the unwritten (and unknown) laws of your tricky colon suddenly don't apply when the world is decked out in pine boughs and velvet red ribbon and holiday fucking cheer. 

It doesn't matter what your colon did yesterday, or the week before, because all of a sudden it's THE HOLIDAYS and you should let yourself enjoy that cookie, that candy, that giant roasted turkey leg (or whatever). Come on! You're around people who can eat whatever they want, and you soooooooooo want to be like them. The urge to "pass" as a normal eater is never so strong as during this particular season, so you let down your guard a little, relax your strict food rules, and indulge, as though hypnotized by listening to "White Christmas" one too many times. 

You swap Christmas cookies, and go to festive holiday lunches, and sample a few too many of the treats that you bake for other people. And then at 3 a.m., the pain comes, and the natural conclusion is that you DID THIS TO YOURSELF. This notion is further reinforced by the first thing people say when you tell them about your latest setback: "Well, was it something you ate?"

Nothing like a little internal (and external) food shaming to keep your sore colon company!

Here is what I know: my colon does this sometimes, and it doesn't matter what I eat. But it's hard not to draw the reasonable conclusion, especially during this season of unrestricted, mindless eating. I'm not immune to the lure of sprinkles, and I'm a sucker for stuffing. Guilty as charged! But this was not my fault. Fistfuls of Christmas cookies didn't help the situation, I'm sure, but the colon has a logic all its own. 

So now I'm sitting here typing and sipping my meals through a straw. I did have a pretty good run: I managed to swing Thanksgiving, and some of December, before my body got up and slapped me, reminding me that ultimately this is my reality, this 3 a.m. pain, not those few days of gleefully pretending my colon was the same as the other girl's. 

I can (and will!) enjoy the rest of the season, the first snowfall and the exchanging of presents and the visits from family. But now, as pain throbs in my side, I will do so with my mouth closed and my guard up. Depending one when the pain lessens, I might be eating soft foods till New Year's. Like it or not, that's just the reality of the situation, my situation, the one that involves an angry and unpredictable colon. I didn't ask for or cause this (repeat to myself a thousand times), and nothing takes the shine off holiday festivities like a bucketful of Prednisone, so I'll be taking it easy. 

And while I'm being kind to my body, I'll try to remember to be a little kinder to myself, and remember that this season can still be celebrated in a way that doesn't involve the massive consumption of butter, sugar, and eggs. There is, hopefully, seasonal happiness beyond the cookie jar. 

Post #113: SSDD

It's less offensive with a floral background. 

Welcome to the story of my life: same shit, different day. And I don't mean that literally, of course, because we all know my bowel movements aren't nearly that predictable. 

Last week, I fell asleep on the couch, nbd, when I woke with an alarming, stabbing, tearing, searing pain in my side. Last time this happened, almost a year ago, I was so alarmed that I went to the ER-I had never experienced pain like that before, and it scared the hell out of me. I thought something was torn or twisted or ruptured, and I was both relieved and frustrated when the doctor on call shrugged his shoulders and I walked out of the hospital with a clean CT and no answers. This time, same pain, but you know what? 

Same shit, different day. 

I was alone, and the phone was out of reach, but I calmly told myself to breath through the pain. Some insipid morning talk show was on, and I tried to listen to distract myself while feeling like someone was shivving me in the intestines (can you use that as a verb? As in, "to shiv?" I'm not down on my prison grammar). When the pain lessened a little, I slowly rolled onto my back, then onto my other side, and then sat up. The pain got better. I called the nurse out of habit, but I had no intention of going to the ER. I didn't expect her to have any insight into the problem, and she didn't, and I had already resigned myself to welcoming back my old friend, le liquid diet. 

Same shit, different day. 

That first sip of protein smoothie tasted like sweet, sweet defeat. 

The recovery from this....whatever it was (the doctors don't know either! wheeee) is going more quickly this time, and I've been adding one or two solid foods a day, waiting to see how my AAC will react to the softest, blandest, safest foods imaginable, dealing with the nausea and pain and discomfort that inevitably comes after eating something innocuous (like eggs). Nervously trying new foods, hoping not to wake up in pain or obstruct. 

Sound familiar? Because that's a big, heaping helping of same shit, different day. 

I went back to see my old doctor, and we made up a little-I didn't cry, we traded circumcision jokes, it was all good-but he had no idea what was causing my pain, and little advice about how to proceed. 

You know where to find that book in the library? It's filed under same shit, different day. 

I'm now waiting for insurance to approve the next test that might give me some answers, the one the new doctor ordered. I saw him a month ago, he submitted the claim, something went wrong, it was resubmitted, and now it will probably (best case scenario) take at least another two weeks to approve.

You know how to get there? You just merge onto the freeway, and take the same shit, different day exit. 

Oh, and this test? I have to swallow a tiny camera, which may or may not get stuck in my AAC. It has a 5% chance of requiring additional intervention/emergency surgery, and I have to prep like I'm having an actual colonoscopy. My doctor actually said it wouldn't be such a bad thing if it got stuck, because then they would know where the problem was. 

Hmmm, this room is a little musty. Maybe I'll light my same day, different shit candle. 

So here I am, back to where I was a year ago (minus the steroids, thankfully). I'm uncomfortable, stressed out, and waiting for a test that may or may not yield any useful information, but which will surely be a pain in the ass (literally and figuratively) to go through. Insurance is being difficult, I'm playing phone tag with doctors old and new, and I obsess and worry over what I eat, which makes mealtimes AWESOME. I wait for pain, and I wait for tests, and I wait for answers. I sleep a lot, and the days pass, and I try to find happiness in small things. Every day I turn into myself a little more, and reach out a little less. 

You all know the chorus: SAME DAY, DIFFERENT SHIT. 

I want a new song. 

Post #107: A failure to communicate

Here comes the bride.....all dressed in CONTROVERSY

This week has been hectic. I have family visiting-two adults, two young kids-and it's been a whirlwind of sticky apple juice fingers, trips to visit the pear trees in the backyard (or parrot trees, as one kid calls them), dashing around the playground, touching ALL THE THINGS at the children's museum, dark chocolate birthday cakes, and organic mac&cheese.

It's not the mess or the chaos I mind, although I have to frequently resist the urge to wipe down all the surfaces of everything in the house (how did cherries get smooshed into the upstairs carpet?!)-it's not the lack of privacy (closed bathroom doors? ha!), or even the invasion of my personal space, something I am usually wary about. When a tiny person wants to snuggle with you on the couch and watch nature programs, you stop worrying about the fact that he probably didn't wash his hands the last time he peed and just let him curl up next to you and put his little feet under your butt, to keep them warm.

What has me kind of depressed is an interaction with one of the grown people. Somewhere along the way, I picked up a flu like illness-my joints are swollen and painful, and my throat feels as though I've been gargling with glass chips. I'm guessing that despite copious amounts of hand sanitizer, my immune system was no match for the DECADES worth of germs coating every surface of the children's museum, and someone probably sneezed on me when I wasn't looking and there you go (update: I have strep throat! ugh).

Naturally, all of this occurred half way through a jam-packed visit with planned outings to the aquarium and zoo, dinners out at favorite restaurants and various other adventures. I could feel the illness coming, and as I hobbled out to the patio my family member asked what was wrong, and I told her.

"Why are you sick??" she asked in an accusatory tone, her brow furrowing in annoyance.

I was in no mood. I believe I told her to ask my mucus, because I had no idea how or why (really?!) I got sick.

Later, as I was curled up on the couch watching reality bridal TV (no judgement! I'm sick!), my temperature rising, she came and sat down next to me. There was a story about a bride with an autoimmune disease trying on dresses. She had huge bruises up and down her arms, and she talked about how from day to day, she didn't know if she would lose weight, gain weight, have hair, have no hair, or be covered in sores.

She tried on dress after dress with one particularly large sore on her arm, something she was obviously self conscious about. Simultaneously, we had opposite reactions; I commented, "Poor lady, that looks painful" while my family member said, "Ewww, gross, why are they showing that?"

It was then that I had a moment of realization: this family member will never, ever understand my Crohn's.

It may seem like a leap, but I realized she just doesn't have the compassion chip necessary to process chronic illness. It will never be anything other then an imposition on her, an annoyance, something to be irritated or disgusted by.

Some people try to be empathetic but just can't understand because they have no experience with chronic illnesses, and some don't even try. They may be sympathetic on the outside, but on the inside they are mentally watching the clock and waiting to change the subject. Maybe this is because of discomfort, or impatience, or the feeling that chronic illness is an inherent weakness (WHY are you sick??)-but they will never approach the issue with anything other than their biases and impatience.

I had been trying to explain things to this particular relative, to bring her into my experience, because it's an important part of who I am right now. That stops today. It's kind of freeing to stop putting myself out there, making myself vulnerable, because I know that she doesn't care to understand.

As much as I would like to, I can't simply excise this part of my life. Since my diagnosis, it's frequently been the most time consuming, emotionally draining, physically exhausting reality in my life. I think this family member has been waiting for things to go back to normal (that's what I want too!), but in the meantime-this is who I am, and this is what I'm going through. 

I won't pretend that these things aren't happening. I won't sugarcoat the truth. I don't have a choice about going through this, but people in my life do have a choice about whether or not they want to hear about it. I forget that, as I tend to go with a full transparency approach. But in the future, I'll be more watchful and wary. I guess I just assumed that people who cared about me would want to know, but as with anything else, I guess there's an interest threshold, one that i have apparently exceeded with this particular person. 

This person has a choice. I keep telling myself that. 

But it still feels like rejection, of me, my disease, and the way I live my life. 

Post #103: Shield your eyes....

Because my life is SO GLAMOROUS you might need shades, y'all. I'm not southern, but I feel like I can still get away with that. 

Behold! Things that happened this week, with pictures!

Super expensive butt aspirin! 

This doesn't really need an explanation, does it? 

Costco, where the elite meet to eat (free samples)

You know what makes a super crowded Sunday afternoon Costco experience that much more enjoyable? STOMACH CRAMPS. 

I wish....

A list of things that gave me heartburn:

Juice

Toast

Eggs

Boneless, skinless chicken

Smoothies

Cheerios. Plain ass Cheerios. 

(hooray!)

This bathroom is swanky, no?

Depressing: when you spend so much time in the bathroom that you go through all of your reading materials (we're talking two periodicals and a stack of catalogs, people) and can't get up to get more. And no, I do not take my smart phone into the bathroom because EW. You put that thing up to your face. A thousand times no. 

UGH UGH UGH UGH UGH

Hearing my LEAST FAVORITE phrase from my doctor. Again. Sigh. 

Making it rain, etc. At the pharmacy. WHOOOOOOOOOOO. 

Also depressing: spending obscene amounts of money at the pharmacy; even the pharmacy tech was like, whoa. 

So, after such a glamorous week, where am I off to next? London? New York? Cannes? Oh right. 

Except without the mohair (??) tea cozy. Sexy.

                                                                                       Try not to be jealous.