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 #108: The Spinach Sprint

Lettuce: nature's leafy green ex lax. 

Hello neglected blog! I have been on vacation-relaxing, reading trashy novels, eating PRODUCE. 

WHAT!? I know.

Ever since I have started this new diet, I can now digest "skins" and seeds and a small amount of roughage. Green beans and tomatoes and unpeeled cucumbers, oh my! Still working on nuts, but PROGRESS!

One of the things I used to enjoy most about vacation was the unfettered access to delicious, fattening foods. Vacation was a time to eat out all the time, and if you did go grocery shopping, to buy sugary cereal. This was a huge thing in my household, which was firmly entrenched in the Grape nuts-Cheerios-sticks and twigs camp of high fiber cereals. But once a year-during vacation-my sibling and I were allowed to each pick out one box of nutritionally worthless, chemically altered, neon-colored, sugar saturated goodness. Cereals that had CHARACTERS (I salute you Cap'n!) and that were advertised on TV. Cereals that were so wrong, they were so right. 

I remember one year buying a box of cereal that was made up of tiny chocolate chip cookies. Cookie cereal! Mind. Blown. 

Vacation was different this year, and frankly eating out hasn't been the same since my colon became committedly angry. Knowing that I would have limited control over food options-at least for the first part of the trip-added a layer of anxiety to what should have been a relaxing time. 

At first, everything went swimmingly. Servers were accommodating about my weird menu requests and substitutions; basically, any restaurant anywhere will serve you grilled chicken breasts and sliced tomatoes. I was doing the tourist thing, I was eating out for three meals a day, and I felt OK. So I got a little cocky. Can you see where this is going? Let me take you there!

After a few days of being exceedingly careful and cautious, I was feeling a little more mellow about the eating out thing. That night the server placed my customary chicken on a nice bed of mixed greens. I felt empowered. Puny lettuce leaves!? You are no match for my relatively less angry colon! I miss salad-I love salad! I had three bites of salad and felt fine. A little smug, even. 

The next morning, I was calmly eating eggs and toast when my colon howled in protest. Without a word to my dining companion, I quick marched to the bathroom and bolted the door closed. The bathroom was between the kitchen and dining room, and there were people constantly walking past the door. 

** Warning! Here's where a little TMI happens. And then will probably happen some more. **

There is a special kind of desperation that comes with having violent bowel movements in a public place. Thankfully, this was a one room bathroom-no stalls-but people were constantly outside the door. I couldn't tell if they were waiting or going back and forth to the dining room, but it felt public, and I felt rushed and embarrassed and sick. Three times I thought I was done, had washed up and had a hand on the door knob-when I had to start the process all over again. It was incredibly frustrating.  For those of you with Crohn's, or angry colons of any variety, you know these things sometimes come in waves. 

A while later, I walked out and felt my cheeks burn as I took my seat, wondering if anyone else in the cafe had been waiting to use the bathroom, or had noticed I had been gone from the table for the past 10 minutes. Mentally shaking myself off, I prepared to continue my day. We headed off to the local giant bookstore, which is really like a literary mini-mall. I could spend hours there, lost in the stacks, inhaling the mingled odors of books old and new. I had just started browsing-I was in the C's-when I started to sweat. 

I ignored it-surely I had take care of all this at the restaurant? When I felt the alarms go off down under. Apologizing profusely, I broke up a conversation a clerk was having with another customer and asked for directions to the bathroom: down the hall, up two flights of stairs, and then down another hall. 

PANIC. 

As I raced up the stairs, I thought I might lose control before I hit the stall. When things are THAT URGENT, the last thing you want to do is JOSTLE THE SITUATION, or hike up a few stairways, flinging aside small children and loitering tourists. I was also carrying a stack of books, which I temporarily shelved on a cart, and made it just in time. To a crowded public restroom full of mothers and children. 

Sigh. 

At that point, I was just happy not to be pooping behind a bookshelf. I was feeling a little sorry for myself, thinking about the what ifs-what if there was a line for the bathroom? What if I didn't make it in time?

But I did make it in time-two more times to that particular bathroom alone. 

Feeling depleted and exhausted, I still managed to find a few books, and then downed some Imodium to prepare myself for the THREE HOUR DRIVE to our next destination. 

I'm not sure what I'm writing about all of this here-it certainly wasn't my finest hour, or my new diet's, or even my colon's. But sometimes, this is what it's like. Sometimes you get lucky and don't embarrass yourself (too much) in public. 

For me, this is just an example of how things can go from good to bad in an hour, or a day. How no amount of preceding health can negate the possibility of sudden sickness. I gambled with the three bites of salad (and I'm not exaggerating-literally, three bites) and I paid the price, but sometimes the reasons for the colonic onslaught (ha, that sounds like a metal band) are not so clear. 

You can do everything "right" and still find yourself in a desperate race for the toilet. 

All in all, I had two bad days on vacation. I brought my injectible medication and stashed it in a  hotel minibar. I made it through. It's easy to forget that when you focus on the desperate moments, when you're whimpering in a deli bathroom and willing your body to just let you be normal for a while.

I made it through, and I had a good vacation. And I can go back to that bookstore next year with my head held high, knowing I didn't leave a little present behind the stacks. 

Post #100: In which Crohn's steals my ball (again)

EVERY TIME. 

In the picture above, I am Charlie Brown. 

The football is lack of pain; hope; happiness; normalcy. 

Lucy is Crohn's. 

Fucking Lucy. 

Day after day, I keep kicking the ball, thinking that TODAY WILL BE THE DAY that I connect, and every day I fall flat on my ass, and am stupidly surprised when the wind gets knocked from my lungs. 

Why should pain surprise me at this point? Why should it surprise me that it's in a different place this time? Why should it surprise me that sorbet and sprinkles (apparently, sprinkles are like nature's little thumbtacks once they hit the colon) would throw my carefully calibrated diet completely off its access? 

And yet: every time it happens, every time the ball gets yanked away at the last minute, I feel it as keenly as if it's happening for the first time. I guess it's a survival mechanism, to disregard the probable and willfully ignore the potential for pain and fear and discomfort. It's a choice I make every morning. How else to live out the day? 

Suspension of disbelief-it's my morning coffee. 

Today was a bad day. Tomorrow? I'll kick that ball again like it's the first time, and hope for better things. 

Post #96: Super secret spy responses for people with dysfunctional colons

"What are you up to these days?" "Oh, you know, the usual. International dolphin show jumping. NBD."

Hey, guess what I'm up to this week? THE SAME THING I WAS LAST WEEK. Waiting around for this medicine to kick in, or to get that test done, or meet with the doctor. The usual. "The usual" also includes eating foods that are mushy and/or drinking meals that are liquid, watching copious amounts of daytime TV, worrying about the foods I just ate, taking too many naps, wasting time online, wasting time in the bathroom, drinking the body weight of my show dolphin in liquids everyday, spending more time in the bathroom, making to-do lists and then being too tired to do them, organizing my pills so I don't forget to take the right ones at the appointed times, googling what pain relievers I can take at 3 in the morning when I'm in pain.

You know, the usual.

My usual is sad.

I try to tell myself that this is a temporary state, that the day will come when I'll have the energy to get my taxes together or take a shower or go out to a movie or go out to EAT, but today is not that day. Yesterday, and the day before that, and many days before that were also not that day, and it's wearing on me.

Everyday people reach out, over email, on the phone, on gchat, and always start by asking me questions I have no good answers for:

• What are you up to lately?
• What have you been doing?
• What's been going on?
• How are you feeling?
• How's your day going?
• What's the news?

I have been up to nothing. I have been up to WAITING. That is what is going on. I have no better news than yesterday, which looks pretty much like today, and probably a lot like tomorrow (hopefully-lack of progress is better than backsliding!).

The frustration is on my end-I don't blame these people for sticking to the social script and asking normal, thoughtful questions regarding my health. I tend to go one of two ways: either I say, "Not much to report, same old same old" or "Meh. How are YOU doing?" and flip the script. It's easier territory for both of us.

But for people I haven't talked to in a while, it's especially disheartening. Maybe I last talked to them a month ago, and the answer is still the same. Let me provide a sample conversation to illustrate the point:

Person: I haven't talked to you in a while, what's been going on?
Me: Oh, you know, same old same old. Crazy colon times up in here! How's the baby?
Person: Oh, little Paxton said his first word! It was "Volvo"-We're teaching him Swedish. His older sister just started super advanced Harvard Pre-K and would like to sing you a song she learned in Vietnamese in her play group last week. Work is good, I got promoted. We're going to the Bahamas next month with the whole family, so that should be fun. I'm going to run a marathon and I just whipped up a batch of vegan carrot cake muffins and I started a class at the community center to learn casual French flower arranging. So really, what have you been up to?
Me: EATING BROTH AND WATCHING MURDER SHE WROTE, ARE YOU HAPPY NOW!?

Seriously, how can you compete? I am stuck in waiting mode. There is nothing glamorous or interesting or noteworthy about waiting mode. You just wait.

Therefore, because I am sure there are others in the same predicament, I have devised a clever system of super secret conversational responses for people with dysfunctional colons in order to maintain dignity and provide much needed interest to common everyday discourse.

Observe:

What you actually did: tried to stay awake while reading Martha Stewart Living Magazine; fell asleep during the riveting section on planting spring bulbs; ate a Popsicle.

Super secret spy response (SSSR): Did independent research on local horticultural trends; drew diagrams for the Elizabethan herb garden you plan to plant in the spring, according to historically accurate descriptions from the time; took a break from your work to eat a light lunch that was high in antioxidants (the Popsicle was chocolate, ok!?).

Let's try again:

What you actually did: Peeled vegetables and dumped them into a pot with a whole chicken to make broth. All of the washing/peeling made your already dry hands crack and bleed; now they also smell like onion and garlic. Hooray! This was exhausting, so you took a nap. When you woke up, you ate some of the broth with soup crackers and watched the Travel Channel.

SSSR: In preparation for your upcoming travels (to the doctor! many doctors, actually!) you watched a riveting documentary on the preparation of native ethnic cuisines on PBS, and then used your superior knife skills to re-create a dish you saw (from memory!). After your morning of labor, you enjoyed a nourishing repast and then treated yourself to a much needed spa ritual with herbs and berries sourced from your backyard apothecary (you spritzed your cuts with bactine and called it good, whatever).

One more!

What you actually did: Went to the pharmacy to pick up more drugs, where they recognize you by name. Went to the grocery store and bought seventeen protein drinks (and some Gatorade!). Came home and realized your hair was flattened to one side (as though caught in a gale) and one half of your face was red because your had fallen asleep with your head wedged between the couch cushions (again) before going out. Decided taking a shower now was kind of besides the point.

SSSR: Because you care deeply about keeping your shopping dollars local, you supported your local businesses and developed relationships with local shop keepers (the drugstore chick? right). You experimented with the latest avante garde beauty trends coming down the runway for spring, but ultimately decided to stick with the natural look, which suits you better anyway and also helps to conserve water, energy, and the ENVIRONMENT (screw you showers!).

Also, any of the following can be employed when the real answer was "spending time in the bathroom":

Started re-reading a classic
Went for a brisk walk
Nursed a baby robin back to health
Started a neighborhood recycling drive
Attended a clothing swap
Cuddled a panda
Went to a "insert name of obscure band here" concert
Chopped firewood
Studied the migratory patterns of Canadian Geese
Planned your next trip to New Zealand
Made your own mozzarella
Herded some goats
Placed second in the 5th annual Dolphin Show Jumping Classic in Dubai

I feel better already! Now if you'll excuse me, I think I need to head out for a brisk walk (ha).

Post #95: Meerkatin' it up

These meerkats are perfectly expressing both my general attitude and  "I have a pain in my colon"  position. 

Here's the thing about Crohn's: you can be having a perfectly normal  (well, "normal") day and suddenly, at 3am, your AAC oh-so-politely interrupts a perfectly sound sleep to express its displeasure. It's kind of how my mom used to wake me up for school. Most moms might slip into the room quietly, sit down on the bed, perhaps lovingly caress your hair and whisper, "time to wake up and greet the new day,  my most perfect treasure!"

My mom would turn on the lights and grab my ankle. Let me tell you, it's disorienting to go from sound sleep to full light and someone tugging on your leg. This is why I got an alarm clock in the 4th grade. This is also how my AAC wakes me up at night: not with a slow dawning of pain, a courteous twinge or two, but a full on onslaught of sensation. Asleep, then awake: not in pain, then in pain. 

I'm back on the full dose of steroids (yeahhh! but really, not yeah), and I should be eating f-ing real food by now, but instead I was thwarted by some lactose-free tapioca pudding WTF. I calculated, and I haven't had a "normal" meal in 23 days. If I'm using a lot of the word normal in quotation marks, it's because the definition of normal is constantly changing. It's stressful. And at 3am, when you are woken and surprised by pain you were not expecting, it's hard not to wish for the "normal" you had yesterday, which could still be crappy, but at least was not as painful. 

Anyway. 

I feel like I am having some emotional constipation about this most recent episode, about the stress and the pain and the uncertainty, and I think some of that can be chalked up to fatigue. But one emotion I can reliably access is my old friend annoyance: that's right, it's time for another round of "stupid shit people say about my AAC!" Because there's nothing like dwelling on the stupid shit other people say to deflect attention from you own emotional state (#avoidance). 

Person 1
I go to visit a friend who knows all the gory details of my AAC. I explain the situation to her. She looks miffed. 

Me: Why do you look pissed off? 
P1: I just think......I think they should be doing more for you. 
Me: Who? My doctor? I think he's doing pretty much everything he can. 
P1: Well, I don't. They should be helping you more. Like, with your diet. 
Me: Uhhh, I'm pretty much doing the broth thing. There's not much to work with. 
P1: Well, exactly! I can't believe there isn't more you could be doing to help heal yourself and make yourself feel better. 
Me: Food makes me feel sick. I'm not sure now is the time to be trying new diets. Plus, you know, doctors aren't into the whole "diet affects health" thing. 
P1: EXACTLY! How stupid is that?! (I don't totally disagree with her, btw). How could what you put in your body not affect the way you feel? It makes no sense. 
Me: Well, now is not the time for a drastic change. I will stick with my broth and hope nothing gets stuck in my business. 
P1: I just think it's been going on for too long, and there must be something you can do to make yourself feel better. 

Subtext: YOU ARE DOING CROHN'S WRONG. Obviously, the foods that you are eating, the ONLY ONES YOU CAN TOLERATE WITHOUT PAIN, are incorrect. Because I am currently trying this green juice recipe I heard on the radio, I am a nutritional expert. 

Person 2: 
Called to check in on me; I provided an update. 

P2: You're still on a liquid diet?! I don't think I could handle that. I mean, not to be able to eat solid foods? I think I would JUST DIE. 
Me: Uhhh, well....ok. I mean it's not like I have a choice about what I'm eating-I'm just trying to avoid pain. 
P2: But still, no solid foods? For almost a month? I don't know how you do it. I would just DIE. 

(thinking is my head: WELL OK WHY NOT JUST GO DO THAT THEN). 

Subtext: Your life SUCKS. What I really wanted to say was this: pretend that everyday, you had to poop out a lime. Like, push it out your entire digestive system. That would hurt just a tidge, no? Now let's say you could just drink the juice instead while your digestive system heals. Lady, you would be drinking that shit by the gallon and not be pining over a Big Mac. For serious). 

Person 3,4,5: I've hard this variation like two or three times this week. Here's one of the actual conversations: 

P3: Still on the liquid diet huh? 
Me: Yup. Broth and Odwalla for the win!
P3: Well, at least you must be losing a lot of weight. 
Me: Well I guess some, but I'm actually doing a pretty good job maintaining my weight. 
P3: Well, it wouldn't be so bad to lose a little weight, now would it?
Me: It would if it meant my body was literally eating itself due to malnutrition. 
P3: Oh. 

Subtext: Fatty, you are missing the silver lining in this whole Crohn's business-you could lose a size or two and really REAP THE REWARDS of this disease!

The sad thing is, these are my friends and family. They mean well. They want the best for me. And the people with my best interests at heart are still the ones supplying endless fodder for this blog. 

Excuse me while I go assume the meerkat position in the corner. 

Post #94: Triple D's, and not the fun kind

Too true, Xzibit. Now go pimp my ride POST HASTE. 

All is not well in AAC land.

The new scary medication and the steroids are not getting me where I need to go (i.e., to solid food island. I am currently stuck in "everything makes me nauseous" lake). The new medication needs time to work, of course, but it is worrisome that there haven't been significant signs of improvement since my little jaunt to the ER. I'm exhausted and every day seems like a new opportunity to feel like shit in one way or another. Sigh.

I'm supposed to keep pushing solid foods, but when a small bowl of white rice or a piece of toast has the capacity to ruin my evening with nausea and pain, it's hard not to develop a complex about eating. I usually stick to smoothies and juice and popsicles and soup (with crushed up crackers that become soggy), but everyday I'm supposed to try something bland: rice, toast, eggs. Then I wait and worry and hope for the best (or wake up at 3 am feeling like I'm about to puke). It's daunting and depressing and disheartening. Triple D's, and not the sexy boob kind.

Yesterday during my doctor's appointment I learned that there is a time frame for this daily game of chicken I've been playing with my colon. I'm giving the scary new medication three more weeks and then I'm scheduled for an MRE to check up on the status of my AAC. In the meantime, I also need to bump up my prednisone dosage (fun times!). I halved it, because of what I like to refer to as "coked up hummingbird syndrome" , but apparently the dose I'm on now is not considered therapeutic. Assholes.

If at the end of this time period things have not improved, then there might need to be a medication shift or more drastic intervention, something I don't want to think about right now. You know shit just got real when the nurse calls to check in your "emotional state" after your stressful doctor's visit (also because you called her like 4 times because she forgot to phone in your prednisone prescription, but it was still nice that she was concerned).

I spent all morning watching "yoga for Crohn's" videos on YouTube and thinking of ways I can make myself feel more proactive during this waiting period, but the truth is that I am pretty exhausted (as my doctor said, it's hard to be perky on a diet of broth). I can probably fit in a few side bends and happy baby poses in between napping, going to the grocery store, and playing angry birds, and maybe that will help.

I guess the point to this whole post, if there is one, is that I feel like I'm approaching yet another crossroads, and I am concerned. Ok, I am scared. I am scared and there is nothing I can do but try to eat toast and wait.

Which is a weird position to be in, when there is so much at stake.

Post #91: holla holla holla

Here, a brief update told in picture and song:
 

 
BNL was my JAM in college. That's right, I call them BNL. We're tight like that.
 
Do you know what's keeping my awake? Prednisone. I didn't sleep last night, and despite halving the dose, I am still wide awake and kind of jacked up, but not in a productive way. Sigh.
 

SOUP......SO MUCH SOUP
 


Also, I have become a soup vampire. My prey? That bowl of loveliness above. I add extra water and eat around the noodles (or sneak a few, if I'm feeling extra adventurous), leaving nothing but a sad pile of noodle carcasses and chicken (should I say "chicken") chunks in the bottom of the bowl. Gross AND unsatisfying! Wheeeeeeee I'm so tired.
 


Haha, me too! Just kidding.

Perhaps because I am so tired, these dog shaming memes are cracking me up. Like, seriously, I just snorted. I <3 dogs, especially hilarious, naughty dogs I don't have to clean up after.

Finally:

Mmmmm, expensive yuppie goodness

Odwalla, I salute you. Your grown up chocolate milk protein drink has been keeping me afloat for the last week.

That is all-I am going to get in bed and try to sleep.

Post #90: Spa day!

I have a mani/pedi at 11 followed by a deep tissue massage at noon......
 


JUST KIDDING! Actually, I have a week long dose of steroids (the real kind! non of this corticosteroid bullshit) and an all liquid diet (for the foreseeable future).
 
When I hear "all liquid diet" a few things come to mind:
 
1.) SPRING BREAK BABY
2.) weird diets celebrities go on to lose weight for big events like the Oscars
3.) jaw surgery
4.) fancy spas. Soups! Cucumber water! Beetroot/ginger/kale/worm dropping smoothies! In between mud wraps, detox like you mean it!
5.) fancy-ass yippies who periodically "cleanse" their systems with home delivered organic juices (I'm looking at you, Mistress GOOP)
 
I was going to list nutrisystem (a shake for breakfast, a shake for lunch) but I forgot about the sensible dinner part. Foiled! At any rate, I don't think about Crohn's, and I don't think about drinking diluted apple juice like it's your job in order to stay hydrated. Suprise! Yet another fun facet of the rollercoaster ride that is my Crohn's.
 
When last I posted, I had just returned from the ER, dehydrated, SOBER (the first rule of Crohn's club is ALWAYS TAKE THE PAINKILLERS. wtf), and freaked out. It's almost a week later, and while improving, the symptoms have not fully resolved themselves. No one is really sure what is going on, but in a bid to buy some more time for the new scary injectible medicine to kick in (yes, I took the plunge), my doctor has decided to put me on steroids for a week, have me do the all liquid diet thing, and hope that my AAC calms the F down.
 
The all liquid diet is, I must say, kind of demoralizing. Nothing says "I'm sick!" like eating drinking BROTH. Ugh. Also, side note, store bought broth is foul-tomorrow I'm going to go all Martha Stewart on broth's ass and make it myself (bouquet garni for the win). I am also going to go buy some Ensure. So far I have been eating drinking watered down fruit juice, watered down Gatorade, watered down soup (like tomato soup, nothing fiber-y), and organic protein smoothie things that taste like the chocolate milk I used to get in grade school. I'm not hungry-I'm actually pretty nauseous-and the one thing I want when I'm nauseous are carbs. Crackers and bread. As you may have noticed, these cannot be consumed through a straw.
 
I feel like these major shifts come on suddenly. Last Wednesday-day, I was fine-I enjoyed a lovely turkey sandwich and went about my business. Last Wednesday-night, I was doubled over and sweating through the sheets. These quick deviations from the expected leave little time to do anything but adjust and plod forward.

So that's what I'm doing-plodding forward, distracting myself with Pinterest, and swimming through a sea of liquids. Cocooning myself in my quilt and constantly checking in with my body for any sign of things that are different-good or bad. Watching endless episodes of "Diners, Drive-ins, and Dives" (don't judge me) and wishing, not for the first time, that I could eat 1/10th of the food they present on the show, or eat food in general with 1/10th of the enjoyment and gusto of the people sucking down greasy chili dogs in some Baltimore hole in the wall.

But before I conquer the chili dog (shudder), I first have to conquer the egg, and the saltine, and if I'm feeling wild, the plain pasta. I miss you, solid foods. I can't wait for us to be friends again. 

Post #86: A day in the life (of an AAC)

After an exhaustive search, it was determined that I have no candy up my butt.

Oh, colonoscopies. First thing's first-everything is pretty much the same, which is still not normal, but (pending the biopsy results) also not worse. Hooray!? Now, let's make a pro/con list of this most recent procedure:

Pro: The morning of, a friend sent me the following encouragement:

"For tomorrow, because I have no idea what to say before someone goes in for a roto-rooting: [pounds fist against chest then raises it in salute]."

AWESOME.

Con: Prep. Even though the pill prep was less vomit inducing than drinking the "jug of fun" (as a pharmacist called it the other day), it still required swallowing 32 giant salty horse pills and then, you know, cleaning house. And by house I mean colon. And by cleaning....well, you get the picture.  

Pro: It's over!

Con: For whatever reason, they wheeled me into the treatment room 45 minutes early and left me there, giving me ample time to stare at the apparatus that would soon be introduced to my AAC. It is really, really long, and the controls look like a video game joystick. Also, I couldn't really explore the room (extra blankets and emesis basins and extra lube, oh my!) because my "tether" (whatever you call the tube connecting me to the IV) was too short. Not that I tried....

Pro: The nurses there are SO FREAKING NICE. The nurse in the procedure room was joking that I had really come in for a day at the spa, and when I left I would have a spray tan. My doctor joined in: "let me go get the cucumber slices!" I'm not sure what prompted this, or why everyone thought it was funny at the time, but I appreciated the attempt to bust out a little humor pre-butt scope.

AMPs for the win!

Con: This is kind of a big one. For a number of reasons, I wasn't able to be fully sedated for the procedure. I was high, sure, but also aware that there was a pokey foreign object in my colon. I kind of floated in and out, but I remember being uncomfortable and kind of panicked about being awake, but also too drugged to really panic, if that makes sense.
In a last ditch effort, they gave me some benadryl, but the problem wasn't a mosquito bite, but more a giant flexible hose in my AAC. At one point, I must have closed my eyes, and I heard my doctor say, "Oh good, she's finally asleep" to which I replied, "NO ACTUALLY I'M STILL HERE."

Good times!

Pro: Even with the SURPRISE! discussed above, I am still not scared of having a colonoscopy. Nothing truly terrible happened, and I won't be developing a complex over this. The benefits far outweigh the downsides, and awake or not, I'll still have another when I need one.

So-colonoscopy? Check. Follow up appointment scheduled? Check. Back to eating delicious solid foods? Checkcheckcheck. Decision on whether to start the new scary medication? TBD.  

I feel like this was a hurdle (a hurdle I asked for, to be fair) that I had to clear to start off 2013. One way or another, that happened, so now it's on to the next.

Post #83: My brows need IRON

dun dun DUN....(cue soap opera big secret reveal music)

I was watching this episode of Will and Grace a few days ago, and for some reason I can't remember Jack lost an eyebrow, was wearing an eye patch, and then had Grace draw on this stunningly natural sharpie version. Haha, oh Jack.

In related news, I went a litttttle overboard on the plucking (again). It's not as pathetic as last time-one eyebrow isn't cocked significantly higher than the last one-but they still look pretty anemic. I am putting myself on a strict no-plucking diet for the rest of the month, which is a shame because tweezing is my happy place.

Someone was telling me that when they were overwhelmed, they piled on the eyeliner-my eyebrows themselves are my stress barometer. And I'm feeling stressed out. Everything (knock on wood a few times) is holding relatively steady-I have one more week of steroids left, and then I will be totally off them. I exercise 5 days a week. I eat out. I'm finally taking my freaking vitamins. And yet, like the understated, elegant beauty that is Jack, I am giving a huge SUPER THIN EYEBROW RAISE to the whole situation.

I just feel edgy and....concerned. Wary. There is so much riding on this last bit of tapering, and then my body's reaction to just being on the one other drug. I find myself craving late night cookie binges and bad TV. I pulled my quilt out of the dryer today and wrapped it around myself and just stood still, in the middle of the kitchen, because I felt so happy and warm and safe. I crave comfort, and sometimes old habits are the most comfortable of all. Cue eyebrow tweezing, stress eating, magazine reading, and Internet shopping. Wheeeeee!

What is especially ironic is that at a time when I am worrying about the hair on my head, I gladly removed a lot of the hair above my eyes. Everyday my hair looks a little more deflated (to my eyes, anyway). It still comes out in the shower and when I comb my hands through my hair after. I keep waiting for the tipping point, the point at which my scalp becomes visible beneath my hair, or I develop a bald spot, or whole clumps start falling out. Part of me just wants to shave it off and be done with it, but that's not right.

So, I keep going. I keep doing what I'm doing until I have my colonoscopy, so I can make more informed decisions. I'll keep sweating with the oldies, and try to resist the siren call of the sugary treats in the freezer. I'll just keep waiting. I'm pretty good at waiting. I've had a lot of practice.

Post #82: We don't know what we don't know

Savasana

I've been doing yoga lately-once a week-and I find myself looking forward to it. I don't particularly enjoy the crowded, stuffy room, or the sweat that runs into my eyes, or the way my arms and legs shiver and shake when I hold a challenging pose. I do like the fact that just for an hour, I am totally focused on the things my body can do, and not the ways in which it malfunctions. At the end, as a reward, you get to do Savasana, or "corpse pose" (shudder). This is my favorite part. You're exhausted and sweaty, and completely inhabiting your body, such that you feel the heaviness of your limbs as they connect to the floor, notice the rise and fall of your chest, feel the tightness in your lower back release like air from a balloon. It is surrender.

 

At the end of the pose, which always comes too soon, the yoga teacher reads a kind of daily affirmation, with a quote and a takeaway message. I don't always remember them, but it always seems like they are applicable to my experience in some way. This could be the happy exercise endorphins, or the fact that I'm probably more receptive to this kind of stuff when I'm too tired to be snarky. We were doing a stretch and the teacher said we were basically wringing ourselves out, like a sponge. That's exactly what yoga is: as I twist and bend my body, all of the fear and negativity and worry are squeezed from my body. I never want to punch anyone after yoga.

 

All of this is a lengthy preamble to this quote I'm going to post below; you can find it (and the awesome music) here. It should come as no surprise, if you read yesterday's post, that I ate all the cookies. So many cookies. I stress ate before the Crohn's, so why should now be any different? I mentioned that I was frustrated with myself for perpetuating this cycle, of doing the "normal" things I did before and expecting-hoping for-different results. I'm frustrated again tonight (and nauseous!), and then I found this quote. It's exactly what I needed. Yoga AND an Internet affirmation? Today was a good day.

I will never be a brain surgeon, and I will never play the piano like Glenn Gould.

 

But what keeps me up late at night, and constantly gives me reason to fret, is this: I don’t know what I don’t know. There are universes of things out there — ideas, philosophies, songs, subtleties, facts, emotions — that exist but of which I am totally and thoroughly unaware. This makes me very uncomfortable. I find that the only way to find out the fuller extent of what I don’t know is for someone to tell me, teach me or show me, and then open my eyes to this bit of information, knowledge, or life experience that I, sadly, never before considered.

 

Afterward, I find something odd happens. I find what I have just learned is suddenly everywhere: on billboards or in the newspaper or SMACK: Right in front of me, and I can’t help but shake my head and speculate how and why I never saw or knew this particular thing before. And I begin to wonder if I could be any different, smarter, or more interesting had I discovered it when everyone else in the world found out about this particular obvious thing. I have been thinking a lot about these first discoveries and also those chance encounters: those elusive happenstances that often lead to defining moments in our lives.

 

[…]

 

I once read that the definition of insanity is doing the same thing over and over and expecting different results. I fundamentally disagree with this idea. I think that doing the same thing over and over and expecting different results is the definition of hope. We might keep making mistakes but the struggle gives us a sense of empathy and connectivity that we would not experience otherwise. I believe this empathy improves our ability to see the unseen and better know the unknown.

 

Lives are shaped by chance encounters and by discovering things that we don’t know that we don’t know. The arc of a life is a circuitous one. … In the grand scheme of things, everything we do is an experiment, the outcome of which is unknown.

 

You never know when a typical life will be anything but, and you won’t know if you are rewriting history, or rewriting the future, until the writing is complete.

This, just this, I am comfortable not knowing.

 

-Debbie Millman (previously) in Look Both Ways: Illustrated Essays on the Intersection of Life and Design

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 #79: Thanksgiving (blogging) leftovers

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

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

 

(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.