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 #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. 

Post #111: Late night lightening lessons

GAH. 

Last night, a big storm swept through, and all day the news channels were wetting themselves with excitement over the impending atmospheric drama. Consequently, I spent the day in a state of agitated expectation, awaiting the coming fireworks show that would play out in the sky above my house. 

I really don't like thunder and lightening. They unsettle me. We get strong storms here, and the thunder is so loud the house actually shakes and quakes with every giant BOOM. I know some people love thunder storms; they throw open the windows so they can smell the electrified air, feel the wind kick up, watch every flash and strike and have their hearts beat with an elemental excitement instead of fear. I am not one of those people. 

I was alone in the house, and determined to act like a freaking adult and get on with my life. I was in bed reading-distracted, as the heavy rain began, when it happened: a totally unexpected, LOUD, house shaking body rattling clap of thunder. I literally jumped up in bed and grabbed my heart. The shock of it all was probably more frightening then the thunder itself, but my first instinct was to turn off the light, roll into a ball beneath the covers, and scan the horizon for future lightening strikes, so I could count the seconds and miles between light and sound, to gauge when the next BOOM might hit. 

I was trying to control my breathing, trying to get my heart to stop sprinting and return to a peaceful stroll, when the lightening strikes started coming closer the closer together. It looked like a giant strobe light had been installed in the neighborhood: light/dark/light/dark. I curled into myself further, already painful joints pulled closer to the body, stomach tight and nervous. 

The lightening kept coming, as did the thunder-closer and then further away, or far away and then closer. It was hard to gauge where anything was happening. I was taut, waiting for the next onslaught, but it was difficult to determine a rhythm. Better to stay ready, I thought; better to stay small and stressed so the scary things won't be so scary when they happen. 

And then, a tiny voice in my head: you can't control this. Any of this. 

You can't control this. 

You are not in control. 

The thought was like a shot of Valium. Instant calm. I unfurled. 

The more I thought it, the calmer I felt: I can't control this. Come on loud noises and bright lights! I can't control ANY OF THIS. I am not in control. 

I turned over and stopped watching the storm, and as the light show played out across the walls of my darkened room, I fell asleep. 

I woke up cold, tangled in damp sheets, only to fall back asleep and  wake up for the same reason. Night sweats. Was it the storm or the Crohn's? Hard to tell. 

Either way, I couldn't control it. 

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. 

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. 

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 #107: A failure to communicate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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