Monday, February 24, 2014

Post #118: Colon fear

ooooooh, symbolism
Oops, there goes another month between posts. To be fair, I've had two colds in the last two months, but an excess of mucus does not impede my ability to write. That would be laziness (or forgetfulness, or both).

Tonight I am thinking a lot about fear; more specifically, colon fear. I've dealt with my fair share of anxiety; I know how the body feels when it panics. I know what rational thoughts to tell myself to calm down; I understand that just because something feels scary, it is not necessarily so. Repeated exposure to anxiety producing situations have allowed me to (somewhat) separate the feelings from the reality. It took me years of, for lack of a better word, desensitization to be able to attain this perspective. I've had an anxious brain my whole life; I've had an anxious colon my whole life; but I've only had an ANGRY colon for a few years. I used to think that fear was fear was fear, but lately I'm realizing that colon fear is different. I'm not desensitized to it yet. You would think that after a year or two's worth of daily cramps and pains and other symptoms I would stop mentally packing my hospital bag every time I spend an agonizing hour on the toilet; but (confession time!) I still sleep with a phone next to my bed and a sports bra and sweatshirt by the nightstand, should I need to get dressed in a hurry in the middle of the night. Colon fear is still very real for me.

Now that I've pretty much concluded that my new "normal" isn't very normal at all, I've been putting out feelers into the real world, trying to figure out what I want to do next and how I can balance the unpredictability of my colon with the needs and demands of the rest of the world (friends, employers, etc.). I've been thinking about what I want to do, and what I can do, and I've come to realize that my colon fear has been clouding and confusing my conclusions.

I heard from an old friend today, who has been as understanding as possible about my AAC and the limitations it places on my life. Hearing her voice on my voice mail made me smile and think of the hijinks that would ensue if we lived in the same city. But we don't. I rarely see her, and that sucks. There's a reunion coming up, and a lot of my friends will be there, and part of me would love to go, but then colon fear rears its ugly head and my mind is inundated with the unknowns of travel, the lack of control over food and bathrooms and transportation, the sick people on the airplane, being away from my doctor and a hospital system I'm familiar with.....the list goes on and on. In any given week I have a bad day or two. How does that look when I'm thousands of miles from home?

The reality is that people with Crohn's don't cloister themselves into hermetically sealed living pods (I wish) away from all of the unknowns of the world, from flu-stricken seatmates to closed bathrooms to problem foods (what if all they served at reunion was lettuce!? ahhhhh). I've been trying to stay in the proverbial pod, and it feels safe, but really it's a prison of my own creation (see illustration above). Part of me wants to break free-to live life with reckless, germ infested abandon-but the colon fear wraps itself around my brain, whispering consoling thoughts about missing life's events and doling out a never ending supply of hand sanitizer.

Someday, my hope is that colon fear will just become like any other fear, something to be considered and put in its place. For now, though, it seems too large to conquer. The catastrophes it promises still seem possible to me. Pre-diagnosis, I was always feeling like I was waiting for the next bad thing to happen, for the next shoe to drop. At this point, I've been hit in the head by any number of falling footwear, and I can't shake the fear that they will keep falling and falling and falling.

And it's that thought, that fear, that specific colon fear that will keep me grounded and away from some of my very favorite people in the world. When it's all typed out, plain on the page, it really does seem like a lot to give up.

Friday, January 17, 2014

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. 

Thursday, December 19, 2013

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. 

Wednesday, December 11, 2013

Post #115: The princess and the (very many) peas

SO MUCH PEA. 
Hello neglected blog! I keep meaning to post, and then getting distracted, and then realizing it's been a month since I last posted. The reason I post at all, and the reason I'm going to try to post more frequently, is that it's helpful to work out what I'm feeling by writing about it-and it's been a long time since I've done that here. Things are a little backed up (cue constipation jokes!). So here goes....

I am now going to tell you a gross story to illustrate some gross realities in my life. 
**TMI warning**, and what not.

I once had a mole removed in the vicinity of my hipbone. It was a standard procedure, with ten little black stitches that look like the fur on a caterpillar's back. I did everything I was supposed to do, but when I went to get the stitches removed.....the wound had not closed. I remember the dermatologist saying, "huh"(add that to list of things you don't want to hear from your doctor). He put a butterfly bandage on, and some sort of sticky glue, and bandaged the whole thing up tightly. I was not to touch it, think about, or even glance in its direction for 72 hours, and then I was supposed to come back.

I'm pretty sure you can guess where this is going. That shit did not want to heal. 

He told me it would close in time, and to keep it dry and clean. I dutifully followed his directions, and it still would not close. It wasn't infected; it wasn't angry; it just wasn't closing. It was on a  part of the body that moves a lot, and even if you stay still most of the time, you're still going to have to get up and pee eventually.

It was during the summer, and I remember laying in the backyard with my pants pulled down on one side, sunning my sad wound in the hopes that the sun would make it shrivel up and close. I felt a malaise-there's no other word to describe it-a deep, unsettling unhappiness that pervaded and discolored everything. I was sick at the thought that I had to go about my daily life with THAT on my body. How could I enjoy the nice weather when THAT was still there? How could I pretend to be happy with THAT laying just beneath the surface of my clothes and a few strategic bandages?

That particular summer, that wound was my pea (see illustration above). Now, just so you don't think I'm being overly dramatic (never!), it wasn't like I had a sword wound on my side. I'm lucky it never got infected; and even though it left a gnarly scar (seriously, it's big), it did eventually close, but I will always remember that feeling-like a sickness of my very being-and how it trumped every other feeling, every other thought. It was like a stain I couldn't wash off. I think that was the first time I was able to articulate and understand how physical problems upset my emotional equilibrium to such an extent.

Side note: you know what finally fixed that problem? THE INTERNET. But that's an entirely different story. 

Now I find myself with a sore in a very Crohn's like place (TMI or not, that's all I'm saying). I'm doing the wound care thing again, and for the first few days I felt that same sickness, that visceral disgust, that soul-dampening weight of a painful, awkward, manifested bodily illness.

It's the pea beneath 100 mattresses, the sharp gravel stuck in your shoe, the mosquito bite that keeps you awake at night: the one niggling imperfection that prevents you from appreciating anything good or happy that is going on around you.

Maybe it's a character defect, but I've always been this way. Even with the Crohn's, there are things that just seem to automatically drag me down into sadness. These things tend to be the more outward/noticeable conditions; they happen, and suddenly I feel totally and completely defeated.

The sore is better; the wound on my hip did eventually close; but when it happens, when these injuries present themselves, I'm like a horse with blinders. In a world full of happiness and joy I plod forward, shoulders sloped, with a singular thought in my head: broken, broken, broken, broken.

And when I'm there, it's hard to see past that revulsion and sickness, to realize they are small (some might say, PEA LIKE) components of a much larger picture. Now, as I've done in the past, I get through it the only way I know how: by plodding forward, miserable and sad, waiting for the day I can venture out and feel normal once again.

This is all a roundabout way of explaining that I recently had some tests that showed things are going pretty well, in AAC land, and could not find an explanation for my current symptoms. To put it another way: the way things are now, the pain and discomfort and symptoms I experience, are my pea. They are still here after (or despite) treatment. They are there, providing me daily reminders that I have an occasionally (although it feels like mostly) dysfunctional digestive system, improved though it may be. 

I can't kick that particular piece of gravel out of my shoe; I can't shake the pea out from under all those mattresses. It is just what remains, and I don't want to live my life being disgusted and sickened and frustrated and held back by something I can't change. 

I've written before about how instead of New Year's resolutions I like to create New Year's mottos. So for 2014, I'm thinking it should be pea related. 

Something like: 

2014: EMBRACE THE PEA (hmmm, too R. Kelly-ish)

or: 2014: MAKE PEACE WITH THE PEA (better)

or: 2014: IT'S JUST A PEA GET OVER YOURSELF (why am I so mean?)

or: 2014: PEAS AND PERSPECTIVE (oooooh)

As with everything else in my life, it seems to be a work in progress. One thing is for certain: the pea is here, and I need to learn how to purposefully incorporate it into my life.

Saturday, November 9, 2013

Post #114: In the business

Welcome to my office. 
Yesterday some good friends who live out of town came to visit. Sometimes, with old friends, I'll get portals into what my life was like pre-AAC-little windows into who I was and how I was before my life was overtaken by Crohn's. That last part sounds melodramatic, and it is, but it's also pretty accurate. 

My friends let themselves into my house and kicked off their shoes, raiding the fridge before grabbing my blanket and making themselves comfortable next to me on the couch. My cupboards are a showcase of beige gluten free simulations of real food, but I managed to find some ancient girl scout cookies in the freezer, which seemed to suffice and prevented me from feeling like a total failure in the hostess department. 

As we sat around and caught up, a weight fell from my shoulders, and for one brief moment I got a glimpse into what I had before, and what I'm missing now. Easy camaraderie with people who knew me before my AAC came out in full force, and know that I'm not really "like this." People who knew me from a time when I was more social and adventurous and funnier and happier. I was never much of a risk taker, never the life of the party-but I was not what I am now. I feel like I need to be reminded of that, by seeing that old version of myself reflected in the memories of some of the people I know best. It's a kind of gift, to have that easy report, with people who know that I am more than my symptoms and disease and don't treat me differently than they did a decade ago. 

I was catching them up on my latest weird medical testing, and one of my friends, who works in a doctor's office, started discussing a bunch of diagnostic procedures. She was unsure of the difference between two procedures (that I've had), and as I was explaining the differences she laughed and said, "I knew you'd know! You are in the business, after all."

That one little comment, offered without malice or judgement, jolted me out of the portal and yanked me back to reality. 

I realized that my AAC, my illness, was now an established part of our shared timeline. It was, in their minds, what I do now. It was my business, my specialty, my vocation. And they're right. 

I'm in the business because I spend so much time around doctors and nurses, and undergo lots of testing, and allow so much of my daily thought process be devoted to thinking about (ok, obsessing over) my disease. I used to have a different business, a teaching job, but not anymore. I'm in the business because I try to be an educated patient and make the best health decisions for myself, even though I feel like I fail a lot of the time, on both fronts. 

I'm in the business because I don't have a choice. 

My friends still love me, and accept me, new business and all. Still, I don't want this to be my job. 

I'm coming up to my two year diagnosis date, and this whole time, through all of the testing and treatments and medications and special diets and new plans and failed plans, I've been waiting to feel better. I've started to, a dozen times, but it never seems to stick. So I've stopped making plans or trying to structure my life in any way that involves responsibility, because the only thing worse then letting other people down is hating yourself for it. 

But sometimes, it hits you in the face, how other people see you. You see through the portal-how you were-and you miss parts of your old life. You see your present, and there's a lot you'd like to change. And since you can't see the future, you put a smile back on your face and eat a girl scout cookie (mistake!) and reminisce, hoping hoping hoping that at some point your AAC stops being your only business. 

Thursday, October 17, 2013

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. 

Tuesday, September 17, 2013

Post #112: The results are in....

Thanks Doc!

Last week, after hounding my nurse/her assistant, I got back the test results I've been waiting for.....and they're normal. I was hoping they were not. I was hoping to get a justification to switch meds and a piece of paper to shove in my tiny doctor's face so I could say, HA! There is something wrong! I was right, you were wrong, and here's the proof (drops mic). 

Fucked up, no? 

To wish that you were, indeed, actually more sick so that your doctor will listen to you? Now I feel kind of defeated, like I made such a big fuss at the last appointment about how something isn't right, and the medicine isn't working, and now one tiny number on a lab slip has rendered my objections worthless.

Ever since I got the news I've felt like a half deflated balloon, the kind that floats dejectedly halfway between the ceiling and the floor. 

A sad balloon. 

I get teary eyed for no reason, and I'm having a bad colon week. Everything seems harder than it really is, and it turns out that it's much easier to hide in bed or watch bad TV than confront the realities of my current circumstances. Realities that include the fact that my doctor may have helped me as much as he can, or that I feel like I have hit a mark where people are essentially expecting me to just get on with my life already, sick or not. 

I see a new doctor next week to get a second opinion. I'm seasoned enough not to get my hopes up too much; I'm not expecting this guy to have all (or any) of the answers, but it will be interesting to hear his thoughts. It certainly can't hurt to have another pair of eyes pour over the paper trail of my sad colonic adventures. 

And while I wait, I will try to focus on the things that don't suck. The weather is getting cooler, which means it's time to break out the fleece. My AAC is tolerating pho again (wooo!). And, my city got a new radio station that plays the 90's hits I remember from 6th grade dances; I mayyyyyyy have almost been late for an appointment last week because I was rapping along with Salt N Pepa. I defy you to be depressed when Shoop comes on-it's just not possible. Seriously. 

Also, and most importantly, I'll keep reminding myself that no matter what any doctor tells me, I feel how I feel, and that can't necessarily be quantified by a lab. After that last appointment, I need the reminder.