Nothing to crow about

DRAMATIC DATELINE STYLE REENACTMENT

There's a big magnolia tree outside my window, with a robin's nest nestled in the crook of one of the larger branches. It was empty last year, but a few days ago I woke up to the whoosh whoosh whoosh of bird wings. A mama bird was flying around the yard collecting moss and hopping around the outside of the nest, plugging holes and freshening up the mud and twigs for the arrival of the next generation.

This pleased me, as I saw it as a generally hopeful sign of spring, a time of new beginnings and possibilities and other Hallmark whatnot.

This morning, I heard the mother robin going batshit insane, pacing along the gutters of the roof opposite her nest, screaming towards it. Putting on my glasses, I saw a fat black crow hovered over the nest, shards of baby blue egg and yolk stuck to its gaping maw of a beak. He (not sure why I thought of it as an asshole male bird) looked, if you'll excuse my anthorpomorphization (I know that's not spelled right, DEAL WITH IT) of the animal, pleased with himself, his large glossy body looking especially menacing in comparison to the small nest he was pillaging. To add insult to injury, he took his time with his breakfast, lingering long after the last egg was consumed, the mama bird increasingly, and impotently, furious.

It was a dispiriting way to start the day (more so for the mother robin, I imagine). The mother bird hasn't returned, and the once tidy nest is in disarray, as though tossed in a burglary. I keep the blinds closed so I don't have to look at it.

I'm not going to try to draw some deep and meaningful connection between this little vignette and the current state of my health, both because that is some serious Freshman Lit 101 shit and also because I'm too tired to attempt that manner of pop-psychology gymnastics. But things are not good right now, and it's hard to remain even-keeled and dry-eyed about the whole thing.

Today was one of those days where I wish I had a giant dog bed I could park between the toilet and the tub, so that I could curl up and doze between bouts of angry colonic activity. It was one of those days when I had to practice, in my head, the polite excuses I could use if the furnace repairman tried to ask me a question or hand me a bill when I was about to run to the bathroom.

"If you'll just hold on a minute, I have to run upstairs."
"I have the stomach flu, so if you could just leave the bill on the table that would be great."
"I left my checkbook upstairs, hold on while I grab it!" (10 minute interval and several toilet flushes follow. smooth!)
"Hold on, I'm expecting an important phone call from my doctor's office, I'll be right with you!"

And on and on and on. Luckily he kept himself occupied during the most active part of the morning, far away from the bathrooms.

I am so tired. I'm tired of having to think of excuses for my AAC, of canceling plans, or of actually forcing myself to follow through with plans and meet ups and feeling sick the whole time, or worried about getting stuck in traffic with what my foreign neighbor would call "a dodgy tummy."

I'm tired of waking up with what I call the goat sweats, wherein I'm pulled from sound slumber by a general feeling of dampness and then get a whiff of myself smelling, you guessed it, like a goat who's just gone to Zumba class.

I'm tired of forcing fluids when the last thing I want to do is drink anything because I'm so nauseous, when even the weight of water in my stomach feels like too much.

I'm tired of eating foods that are white, whitish, beige, brown, or taupe. Noodles, toast, plain applesauce, rice. I'm tired of simple foods like hummus tasting like a vacation for my tongue, when there is a great wide world of delicious food that I could be eating.

I'm tired of being tired, to an extent where putting together sentences and remembering specific words feels like work.

I'm so tired, in fact, that I actually called my doctor's office and requested steroids, which I hate, because I want to feel better.

I picked them up today. I'll start them tomorrow. I'm too tired to think about the side effects, or getting work done, or putting away my laundry, or doing anything beyond travelling between my bed and the kitchen and the bathroom and couch.

Tomorrow, I'll take the pills with a swig of Gatorade, hoping for an energy assist from the quick jolt of glucose to my system. I'll eat my toast and hope for better things, Hallmark sentiments and all.


It's all I can do.

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 #36: Vegetables, let's be friends

Well velociraptor, that's a thinker. I vote for YES.

I'm looking at this picture, and the only thing I can think about is the first Jurassic Park movie, the only one I saw in the theatre. Being a child of the 80's, my expectations for visual effects in movies were quite low, so this movie BLEW MY MIND. I remember coming home and being petrified that a velociraptor would jump out of the kitchen cupboards, so I made my dad check them all. And the closets.

Also, whenever my glass of water shakes, or when vibrations make those concentric circles in the water, I immediately think DANGER (fear being equally split between earthquakes and dinosaurs). My brain has a way of stubbornly clinging on to scary/disturbing movie scenes, which is why I refuse to watch horror films. I'm the youngest in my family, as were most of my friends-we had older siblings who gave us access to the cinematic masterpieces of the day: Jaws, Indiana Jones, Gremlins, ET, Ghostbusters, The Goonies, Chucky (shudder). Scenes from these movies, in all of their magical 80's glory, are indelibly stamped in my memory. Thus, I will never use a wake board in the ocean, resurrect an extinct species using DNA trapped in amber, or attempt to steal the ark of the covenant. Important movie life lessons!

But the velociraptor poses an interesting question, one related to my daily struggle to provide my body with healthy food. Do you know how hard it is to eat fruits and vegetables when you can't digest FRUITS AND VEGETABLES?! If left to my own devices, I would eat nothing but beige foods: baked chips, bread, hummus, rice, chicken. These are safe foods. Boring, bland, and banal (3 b's!), but safe. I did that. For years, actually. And while it helped a little (like putting the newspaper over your head when it's raining-you still get pretty wet), it also drained more of my already depleted energy. Thus, the restriction of "white" (i.e. refined) flour/sugar and the reintroduction of produce.

I'm not adverse to vegetables (ha, that's a ringing endorsement) but I am very wary of them. I was a vegetarian for many years, so I've shoveled my share of kale and chard and brussel sprouts (I always think of those as "advanced" vegetables, for some reason) into my mouth. But that was when I still had a gallbladder, and when my colon was only minor-league pissed. I could eat things from menus that were described as "crispy" and "decadent." I didn't order sauce on the side. I ate big salads. I ate dairy products. And even if I was eating like shit, my diet was varied enough that I got what I needed to fuel my body.

Fast forward to today: my gallbladder is a distant memory, and my colon is now major-league pissed. Dairy is a no-go. "Skins" from beans and vegetables are off the menu. Raw vegetables? Ha!

And yet, more than ever, I need to make sure that I'm giving my body the nutrients it's having trouble avoiding-but my body doesn't want to cooperate. It's like trying to feed pills to a dog. You can wrap it in cheese, cover it in maple syrup, or stick it in a piece of sausage, but at the end of the day the dog is still like, bitch please. I know there is a small white pill in this mess. I know you think my brain is the size of a walnut, but I still have EYES. Now watch me daintily chew around the offending pill while I laugh at your ridiculous human machinations! Victory for CANINE KIND! (this is always what I imagined our old dog's inner thought process sounded like. No dog could be that crazy on the outside without some sort of hilarious inner monologue going on.)

Even if I peel it, puree it to a pulp, boil the shit out of it, or blend it in a smoothie, my colon KNOWS when I slip it some of the healthy stuff. Sometimes it lets me get away with it, and sometimes not. Today's peeled/chopped cucumber salad has about a 50/50 chance of successful absorption and processing.

A serving of fruits/vegetables is only 1/2 cup. I try to visualize how many 1/2 cups of natural materials go into my stomach each day. It's not enough, but it's more than I was getting on the bread only diet, and that's something. Sometimes I can eat thinly sliced cucumbers and roasted red peppers and cooked string beans; sometimes, I totally count the tomato sauce on my corn pasta. Like everything else about this disease, there are bad days, and then there are small wins. Today I felt like a rock star, eating my grilled salmon and cucumber/tomato salad. Tomorrow, I might be lucky to get a 1/2 cup serving of anything that grew in the ground down my throat. What I do know is that if I don't try, and keep trying, that I'm denying my body something it needs.

Post #7

This is not where my colon would live. It would probably live in a haunted house. 

So, day 2 of le taper. I'm not sure if I'm going to have any idea of how my body is reacting to the change for a few more days. I think the bigger issue is the new foods I've been introducing into my diet-fruits and vegetables and spelt, oh my!

This whole industry around gluten free-the proliferation of breads and chips that take up more and more real estate on the grocery aisle-is kind of astounding. If your body can truly not tolerate gluten, if you're diagnosed with celiac or an allergy or even if you feel you have an intolerance/sensitivity, then I'm glad you can now buy gluten-free brownie mix at your local grocery chain. For my purposes, in wanting to cut down on the inflammation caused by white flour/sugar, I'm not necessarily convinced gluten-free is the way to go. Is trading white flour for white rice flour really that much of a step up? Is it that much easier to digest? Wouldn't eating whole wheat flour accomplish much of the same thing (since as far as I know, gluten and I get along)?

Don't get me started on sugar-is brown rice syrup or organic cane sugar or any of that crap superior to normal sugar? I know that HFCS is the devil, etc., but anyone who does a few laps around Whole Foods knows it's entirely possible to have organic, "healthy" junk food.

And the YOGURT. I don't eat dairy, but it is now possible to get soy or lactose free, or goat's milk, or even freaking COCONUT yogurt. And then there are a myriad of flavor choices. Some of them have sugar, some of them just look gross. And what the fuck is kefir?

All of this is to say that I am thoroughly confused about what to stuff in my face for breakfast, lunch, and dinner. I have no one guiding me in this pursuit-I have books (I bought more books yesterday, in fact!) that say different things, and for each website I find that gives one piece of advice, I can find two to contradict it. My doctor-doctor says diet doesn't really play a role in Crohn's treatment. My asshole naturopath, of course, completely disagrees, and just told me to stop eating all carbs completely without pointing me towards any resources. I know there is no specific diet for Crohn's, but I WOULD REALLY LIKE FOR SOMEONE TO JUST TELL ME WHAT TO EAT.

Just after I was diagnosed, I went to see a nutritionist, who put me on a super low fiber diet. Lots of white stuff involved. I brought with me a list of my safety foods, most of which were carbs. That was all I could tolerate at that point, but I kind of want to test myself and see if I can eat pretty much any food you could buy at a farmer's market. Since I've strayed off the list, though, I have less predictability in my day, bowel wise, which is restricting my activities somewhat. For now, it's kind of a no-win situation. I'm spaced out and tired, but my system seems to be tolerating the new foods, and in the long run I just don't believe that a steady diet of white bread and Gatorade is going to help me get my energy back.

In other news, I read somewhere that today is National Hummus Day. Hummus is a major food group in my diet, and I think my body composition is approximately 2.5 percent chickpea. Thank you hummus, for always being the one "fun" food on my safety list. You have never pissed off my AAC, and for that I am grateful.

Tomorrow: adventures in gluten free baking (hint: it's mostly edible!).

ps: Why does spell check recognize the brand name "Gatorade" and not "Crohn's disease?" CONSPIRACY.