Wednesday, August 28, 2013

Post #110: All by myselfffff......

But Brad! I thought you.....CARED for my colon!
I think I maybe just broke up with my doctor. 

A few things I know for sure: 

1.) During this appointment, I bypassed the ugly cry and proceeded straight to the bawling, hiccuping, snotty sob-attractive!
2.) I don't feel like having to fight to be heard or understood anymore
3.) I felt stupid and foolish for DARING to have a different opinion
4.) I need a second opinion

I came into the appointment prepared, as always, with a nice little information sheet and list of questions. Things started off as usual, but at a certain point I found myself tuning out the doctor's responses as an angry chorus repeated in my mind: LISTEN TO ME! LISTEN TO ME! WHY ARE YOU NOT LISTENING TO ME?

I told myself I wouldn't be combative, that I would be able to have a polite, dispassionate, constructive discussion of my disease and current symptoms. But guess what? I have no polite, dispassionate, or constructive feelings towards my health at the moment. I wanted to be noticed, and heard, and most importantly, believed. I left feeling pitied, discounted and embarrassed for having been so emotional. 

I wish I could have held my own during that appointment. I wish I could have had a rational conversation with my doctor without the hysterics, because crying in front of medical professionals makes me feel weak. But I wasn't able to, and halfway through the appointment I just gave up. I kind of dumbly nodded my head and said I understood, because I wanted it to be over. I didn't want to fight and argue and push back against anything. 

I don't think I have a bad doctor; in fact, I think I have a really good doctor.....clinically. But as I managed to spit out during the appointment, "I am more than my test results." The sum total of my experience cannot be accurately captured in a relatively clean colonoscopy or unremarkable lab results. I wish he could understand this. 

Finally, he asked if I wanted a second opinion, and I said I thought it was time. 

I could go into more of the specifics of the appointment; how he did, indeed try to blame my symptoms on my IBS instead of my IBD; how he recommended a dietary approach like he invented the fucking diet I'm on; how he invalidated my opinions because they were things I just "knew" and couldn't prove, or because "time of onset doesn't equal causation;" how he said he was sorry, and I believed him. 

It doesn't really matter. I cried all through the appointment, and then all the way home, and then in bed a little under the covers. I felt alone and disappointed and emotional and angry. 

I don't have the energy for this. I don't have the energy to advocate for myself with an entirely new doctor at a different hospital. I don't have the energy to start all over again, and repeat tests and conversations and spit out a list of symptom after symptom. I could stay with this doctor; things didn't end badly enough that there is irreparable damage, but it was certainly a turning point. I could pretend nothing happened and continue on, but we would both know things were different. 

I don't have the energy to push forward, but I also don't have a choice. 

Friday, August 16, 2013

Post #109: Welcome Home!

Does hamburger guy kind of look like Roger Ebert? Maybe not. 

Thankfully, my colon was pretty chill on vacation. 

It waited until I got home to freak the f-out. Hooray! 

This is just example #1596 of the complete mindfuck that is Crohn's. After a relatively stable month, where you eat out all the time, and tolerate a wide range of foods, and have no pain, suddenly: BAM! Your angry colon strolls into the joint and bellies up to the bar, orders a few shots of tequila, and TEARS THE PLACE DOWN. 

Try to limit my stress, you say? Try to stay positive?? YOU TRY STAYING CALM WHEN YOUR COLON IS UNPREDICTABLY ANGRY. Also, bite me. 

It has not been a good week. Last week was worse. 

I am so, so tired of all of this. 

I got some blood work done, to see if I can figure out why my AAC is being an AAC, but really? Those numbers won't give me much clarity. I have a doctor's appointment next week, and I doubt I'll learn anything new there either. I have been avoiding going back, first  because I was feeling better, and now because I'm feeling worse......it doesn't make sense to me, either. I don't want to see my doctor, because I don't want to hear what he has to say. I don't want to get my hopes up. I don't want to hear anything that will make me more afraid or stressed out. I don't want to hear any of the familiar platitudes, or get fed any of the familiar lines. For instance: 

If he says I'm in clinical remission.....

If he blames this on my IBS (lucky girl, I have both!).......

If he tells me to give this medicine more time........

I will probably slap his tiny doctor face. Or leave. Or, realistically, start to cry, because I am too tired and frustrated to do anything else. 

I was going to try to write a funny post about how I always read food magazines in the bathroom (true), but I don't have the energy. I had a bad colon day. 

And judging from the state of things down under, I might have a bad colon night. My AAC is on another bender, soused to the gills and looking to start a fight. 

And there is nothing I can do. Welcome home, indeed. 

Monday, August 5, 2013

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.