Post #42: Circular logic

These two Crohn's buddies are playing with a Frisbee, which is ROUND. Shape of the day!

I do love a theme, so today we're going to be talking about CIRCLES! Now, there are a lot of disgusting circles that go along with Crohn's that I will not be discussing, because really. No one wants to see pictures of that shit. However, I can list them: colonoscopy shots, ulcers, butt holes, toilet bowls, the ends of empty toilet paper tubes (SO MANY)......I mean, there's tmi and then TMI.

Let's start off with an easy circle: pills.

there is something very aesthetically pleasing about this pill color palette

Ok, some of those are ovals, but ovals and circles are like cousins, whatever. When I was first diagnosed, I was taking about 15 pills a day.....now I'm down to three (and they're not Crohn's related). However, if I were to add in the supplements that I should be taking for general health, not to mention AAC health, that would add at least 7-8 pills to the party.

Swallowing the actual pills isn't a problem; I can't seem to get over the mental hurdle of having another daily drug/supplement regimen. Now that I'm off the steroids, I kind of want to pretend this little interlude never happened, and return to a life of relative normalcy, which for me includes a day or two a week where my AAC pops up to say hi. However, I know that these supplements-prescribed by the asshole naturopath, blessed by my gastro-might be beneficial to the process, plus I have the freaking lab work to prove that I need to, I don't know, SUPPLEMENT my diet with some of these vitamins.

I've narrowed down the list to the absolute bare minimum: omega 3s, vitamin D, iron, and a multi vitamin. Besides having rancid fish burps, none of these pills are going to give me "moon face" or make my hair fall out, and yet I am more hesitant to take them then I was the steroids! I attribute this to 15% laziness, 30% distrust of vitamins in general (the "expensive pee" theorem), 40% avoidance of anything I view as "extra credit" and not mandatory, health wise, 10% concern that the pills may have gone rancid from sitting in my hot car for the last 4 months, and 5% general neuroses.

Let's rollllllllllllll on down (get it??) the road to our next circle:

I would totally push this.

 I get regular oil changes (sometimes), pay my library fines (eventually), hold doors open for strangers (always), and will tell a cashier that he has forgotten to ring up that expensive juice that I could have TOTALLY gotten for free (sad but true). However, I do have a bit of a wayward streak. Tell me I can't do something, and I immediately want to do it. I frequently have the urge to open doors that say "fire exit only" just to see what kind of noise they make, or knock down all of the standing cones around a construction site with my car. Basically, I want data. I want to know what happens if I do something I know I shouldn't-it's not the act of pushing the button that's interesting to me, but figuring out what happens next. I need to push boundaries so I know where they are.

This relates very directly to my health, and especially to this post-steroid period where I'm trying to figure out whether or not I should go on new medication (or if I need to). I know I should continue with my restricted diet, avoiding carbonation, white flour, white sugar, dairy, "skins" and high fiber stuff. It seems to be helping, so any normal person would think, great! I'll keep doing that. I should also take my supplements, meditate, and exercise. Non-surprising admission: I'm not doing any of that shit.

It's spring break (food wise) up in here, with me shoving all kinds of "forbidden" foods down my gullet. Last night, I went to a party with lots of good catered food, and while I did avoid the pasta and bean salads, and the tiramisu cake (assholes) I did eat white bread, some kind of stromboli thing (cheese, more bread), and an assload of sparking apple cider. For lunch, that say day, I had Mexican food-chips, salsa, guacamole, pumpkin seeds, lettuce, carrot strips, tortillas. Basically, I was running down all of the entries on the "fuck you" food list.

Today, I've had a gluten free cookie, a gluten filled blueberry scone, a slice of coconut bread.....the list continues. I keep eating this shit even when my stomach hurts. Before, this would send me into a panic, and it's still worrisome now, but I need to know what happens if I break my food commandments, the one thing I was clinging to amidst all of the colonic chaos.

This is a stupid thing to do. I shouldn't be stressing out my AAC, but I just don't know how to behave right now. I feel better, so I'm socializing more. Should I continue my restricted diet? If my bowel movements are pretty normal (had to sneak that in somewhere) do I keep delicious, delicious white bread off the menu? If I'm not feeling as tired, is it ok to tax myself physically by running around all day? What will happen if I eat dairy? Drink something fizzy? Skip my usual nap? Forget to drink as much water as I normally drink? I just. don't. know. So I do these things to find out, to push against my fears and find out what the reality is on the other side.

I can tell you this much: all of the fuck-you foods have made me feel run down, tired, and bloated, in a way that has nothing to do with my AAC. If I can pull my head out of my ass, maybe I'll recognize this fact as the data I've been looking for.

This post is long, so I'll just do one more:

These are the wheels on my whip. Hahaha, no they're not.

Ok, so finally: I'm going on a car trip. This scares the hell out of me. Company, eating out constantly, delicious vacation food temptations,  a complete change in my schedule, and no Trader Joe's (where the majority of my food comes from). We'll see how that goes.

Those are all the circles I can manage tonight, so it's call this part one. I am going to work this whole shapes theme for all it's worth.

Post #41: TitillatingTriangles

Well, we are going to be talking about shapes today....so let's start with a triangle. Goat nip!

Oh google images, so random. This does, however, make me excited for the county fair I'm going to next month (they race PIGS!).

Anyhoo. Today is a post about shapes! Let's start with triangles. I was out to lunch with a friend who innocently asked how I was feeling, and I launched into a whole complicated spiel about "treatment triangles" and TNF-blockers and corticosteriods until her eyes glazed over slightly and she fell asleep in her bowl of pho. Just kidding, she wasn't eating pho!

Here is the aforementioned Crohn's treatment pyramid, or a version of it:

Hmmm. I thought I was chilling at the bottom of the pyramid, but after looking online it seems I've been in the middle the whole time! Thanks for setting me straight Internet! I suppose than that the next medicine to try would also be in the middle, making it a lateral, rather than vertical move. This is comforting, in a weird way.

 

 

At an IBD symposium that I went to, a doctor was discussing a new train of thought where the triangle is inverted; it's kind of like a scorched earth approach to treating Crohn's. Throw every medicine at the problem to force the Crohn's into remission and MAKE IT STAY THAT WAY, instead of partially or ineffectually treating it, having surgery, and then busting out the hardcore drug treatments. Of course, the further you climb up on the pyramid, the more you face some seriously scary side effects and complications (serious infections, liver damage, lymphoma.....).

Right now, as of a few days ago, I'm off the pyramid entirely for the first time in about 6 months, which feels strange. This is where it would be handy to have some friends (or relatives, neighbors, or casual acquaintances) with Crohn's-to hear their experiences on/off these drugs. There's a whole other post about my avoidance of support groups, but that has nothing to do with shapes.

Speaking of which, here is another fun pyramid:

I guess I should have called this the depressing shape hour. I think it's useful though, when trying to explain Crohn's to people who don't know much about it (me 7 months ago! boo), to fully separate the idea that IBS and IBD (Inflammatory Bowel Disease-Crohn's or Ulcerative Colitis) are twin diseases. It's not like one is the bitchy twin and one is the EVIL twin.

I I feel like some people think that Crohn's is just slightly worse IBS. At this point (thanks again Jamie Lee Curtis and the 9 different probiotic commercials on TV every night!), people are slightly more comfortable talking about their bowel issues (I mean, the commercials flat out say the words gas, diarrhea, bloating, and occasional irregularity). Now, having all of these symptoms doesn't necessarily mean you have IBS (did I sneak away from this blog and get a medical degree? No I did not), and people with IBS don't necessarily have all of these symptoms. For 10 years, I was thrown into the "IBS" category, and I know the frustration of dealing with doctors, friends, and family members who discount your "weird stomach issues." IBS can be a debilitating disease. But it is not Crohn's.

View the pyramid. Frankly, doctors have no idea what causes IBS, and the treatment options are hit or miss, at best. Technically, I still have IBS on top of the Crohn's (lucky me!), but with IBS I wasn't worried about long term DAMAGE. My immune system wasn't attacking my AAC. I was still miserable a lot of the time, or course, but not scared. Now I'm pretty scared.

Finally, let's talk about the most FAMOUS pyramid.

Nope.

More famous, but still no.

HAHAHA no. Come on. Think of 6th grade science class!

WHAT THE HELL KIND OF SCHOOL DID YOU GO TO!? I'm alerting the authorities, and maybe trying to sneak into the gym to watch that particular assembly. Also, does the penis look a little like Hugh Laurie? (the FACE perverts, the face).

People, I'm talking about THIS:

Now, I know the government has some newfangled, jacked up "new millennium!!!!" pyramid, but this will always be the food pyramid to me. What I need is for someone to make me a Crohn's food pyramid. I don't eat dairy, I don't really eat vegetables, I barely eat fruit, and I cut out white flour and sugar. So please, someone create a pyramid for my AAC. I need a realistic way of getting these foods into a system that constantly rejects them. I'm all about the smoothies, but one cannot exist on smoothies alone.

I borrowed Jessica Seinfeld's book (she purees different vegetables and "hides" them in her kid's foods-it's called "Deceptively Delicious!" ugh) from a mom friend, but it was mostly comfort food recipes (i.e., shit I can't eat) with a soupcon of veggies hidden in the cream sauce. I'm sorry, if you make mac & cheese with 1/2 cup of pureed butternut sauce, it's still MAC AND CHEESE. When your children leave the house, they will have a love of cheesy noodles, but not of squash. Do you plan to cook for them from the retirement home? Who am I kidding, they'll be able to afford macrobiotic super chefs if they desire, and probably someone to sneak into their kitchens at night and slip 1/2 cup carrot puree into their meatloaf. I don't know why that book annoys me so much.  

Thus concludes today's discussion of triangles. Stay tuned for super exciting posts about circles, squares, and trapezoids! (ok not trapezoids, but 50 pts. for me for remembering that word from geometry, which I have thoroughly repressed. yeah!).

Post #40: GIVE ME BACK MY STEROIDS

This is what comes up when you google "clinging to a pill." If this adorable bird can shop for steroids in his tiny cart, he is MY NEW BEST FRIEND.

Sigh.

If you haven't already guessed, I'm off of the steroids. I dragged out the tapering as long as humanly possible, but here I am, steroid-less and sad. Today I had wicked cramps, the kind you can't really walk off, so I got into bed and curled up like a potato bug and rocked back and forth until it was time to sprint to the bathroom. Since I had a lot of time to to think in there, I concluded that it was probably not a good sign that DAY ONE off of the steroids was so spectacularly unsuccessful (success being defined as the absence of explosive diarrhea).

Since I'm tired and feeling defeated, I thought I would focus on the stupid shit people have been saying to me all day. This is part of the reason I am feeling tired and defeated, besides the lack of delicious, delicious steroids. Enjoy!

Scene1:






Me, in the fetal position (see above, except that I was not so happy. Also, I don't have white pajamas and my ass is bigger). In pain.
Person I live with (PILW): Oh, I'll come back, you seem busy.
Me: I'm not busy, I'm having cramps. What do you want?
PILW: No no, you're busy, it can wait.
Me: No really, what do you want?
PILW: Are you in pain?
Me: Yup. What. do. you. want??
PILW: I was looking for some mail. I'm missing a magazine. Did we not get this magazine this week? Maybe it was a double issue last week. I don't remember getting one last week, either. Have you seen it? I wanted to read it. Really, I can come back.
Me: (picturing fire ants consuming lower half of person's body): Haven't seen it!!
PILW: Well, ok. (stands there). Right. (leaves room).


Scene 2: Shortly after resulting colon explosion

Me, sitting on couch drinking some OJ. Feeling sorry for myself. Clutching pearls.

PILW: How are you feeling? Are you ready to go?

Me: Like crap. And no. I don't think my colon is done.

PILW: Well, can you take a shower while you wait? Then we'll be ready to go.

Me: No! I am resting. I'm going to drink some juice and wait and see what happens. If you want to go right now, go without me.

PILW: No, no, I want to go with you. So, what do you figure-about a half hour? Then we'll go?

Me: My colon doesn't have a pop-up timer like a motherfucking turkey. I don't know when it's done. I can't give you a timeline.

PILW: (looking unsure). Well, I'll just wait.

Me: If you stand there and stare at me the whole time, I may kill you in the face.

PILW: I'll just go in the other room. So, after lunch we'll go, right?

Me: Sigh.

Scene 3: Later in the afternoon. At Costco, home of the cheapest, most phallic hot dog in town.

Run into family friends in the beverage aisle. Haven't seen the male half of the couple in a while. Pleasantries are exchanged.

Guy: You look great! (strike one) Have you lost weight recently (strike two!) ? You're looking really great (and you're out!)

Me: Um, yeah, thanks. You know, the whole not eating thing.

Guy: So the not eating thing is working for you huh? My son's friend, now this was a long time ago, I don't think they do this anymore, but he broke his jaw, and they wired it shut! Had to eat all of his meals through a straw. Now, that was a real weight loss solution right there.

Me: I'll keep that in mind.

Annnnnnnnnnd, FIN.

UGH. In other and perhaps related news, the clenching continues.

If nothing else, I would like to say yeah for 40 posts! I never stick with shit this long. Hopefully the next 40 will be filled with a calmer AAC and more happiness, puppies, and rainbows (and the chest hair of one Mr. Tom Sellack).

Post #39: Thirsty girl

Lady, I hope those are all filled with vodka, because that is the only excuse for that outfit. Also, I enjoy your fancy headband and "welcome to the gun show" pose.



One. more. day. One more day of steroids and then I am back to where I started. I'm not sure that I'm in remission anymore, but then again I'm not sure I'm not......I guess I'll find out the old fashioned way, which is to stop taking drugs and see what happens. This is not the fun kind of suspense, like waiting for college acceptance letters (although that wasn't fun either), or watching Law & Order and trying to guess who did it (although I always guess), or watching elimination night on American Idol (which I don't do, because I'm not 12). Hey guess what? I DON'T LIKE SUSPENSE, especially when it has to do with my health. Nothing good can come from having a surprising colon. I'm just saying. I feel like that should be a t-shirt, or a bumper sticker at the very least. In my head, I picture a colon hiding behind a tree and jumping out at unsuspecting tourists. Eventually, some poor guy from Kansas will have a heart attack, and then I can say, SEE? No one enjoys a surprising colon! Officer, arrest that organ.

Anyway.

In my vast experience with Crohn's (vast being two seconds worth of useless expertise), I've found that part of the disease is playing lab rat (calm down PETA, they're testing all of this shit on me). I've been on steroids for 5 months now (yikes), in varying doses, and random other medicines before that, and while I understand that there is trial and error involved in finding the right medication for the job, it seems like I spend and awful lot of time shoving random chemicals down my mouth and waiting to see what happens, or coming off those drugs and waiting to see what happens. The whole process feels less like a calculated scientific endeavor than a birthday party game where the doctors and naturopaths blindfold themselves and randomly roam through a pharmacy, picking pills at random (that would be a fun birthday! note to self, call Walgreen's). So I guess the waiting game begins anew.

The reason for the delightful picture above is that I think part of the reason this week was so crappy (yes, yes, I know, all of the slang for "bad" is related to poo: crappy, shitty....well, those are the only two I can think of right now) is that I was dehydrated. It's very hard to hydrate yourself when you're trying to stay away from Gatorade, which I am, because I could sooooooooooo jump back on that delicious, delicious lemonade flavored wagon. The other problem, as explained by my nice naturopath and the rakish doctor at urgent care who pumped me full of three litres of fluid (ha!) a few months ago, is that when you're having a lot of diarrhea, and your AAC is inflamed, it's hard for your body to absorb water anyway. You can drink water until the cows come home, but if you're body's not absorbing it, you're not really solving the problem.

I can usually tell when I'm dehydrated-I get leg cramps, get dizzy when I stand up too quickly, and get super emotional (because, you know, it's not like I need to keep the water IN MY BODY). Looking back, this week met all of those criteria, but with the help of some Imodium I got myself back on track. However, if I had gotten my ass in gear, I would have gone to get rehydrated. If you've never been rehydrated before, let me explain how it works. You go in (to your naturopath's office, in my case, or to urgent care or the ER or wherever) feeling sick, and sluggish, and depleted, and they pump delicious saline into your veins, and suddenly peace and calm and coolness and rainbows (and, um, water) flow through your body. Your brain, which was stuck in anxious panic mode, relaxes. Mental clarity returns.

Once, when I was teaching, I was having an awful symptom day, and I scheduled a last minute appointment with my nice naturopath to get some hydration. He has these mini bags that take a half hour to drain (the bigass ones at urgent care or the ER take longer, although it also depends on how dehydrated you are), which he usually uses to deliver vitamin cocktails, but I take mine, in his words, "straight with no chaser." I came in crying (I always cry at the nice naturopath's, always) and nauseous and tense, with a headache and a general weariness with life. A half hour later, and it was like someone had doused me with normal person healthy juice. My brain started working at a normal pace again, my headache was gone, I was hungry. I went to work and was able to teach class with actual focus.

In Las Vegas, they have this bus that roams around and rehydrates drunks. Observe:



Really, it's a thing. You get on, they hook you up with fluids/vitamins/probably some spiked redbull shit, and in an hour or two you're good to go. If they had this where I lived, I would totally go, although I might swish with some vodka first so I could fit in with the cool kids.

When I was in high school (probably after a cribs marathon), I was adamant that if I had a mansion someday I would put a Subway in the basement and keep it staffed 24 hours a day so that whenever I had a craving, I could EAT FRESH. To that ridiculous list, I would also like to add one of those exercise swimming pools with a current you have to swim against (I think they're fancy) and a rehydration bus. Or minivan, I'm not greedy. Who needs Gatorade when you have an asston of saline at the ready?!

Post #38: This post is brought to you by the letter "I" (imodium!)

Doesn't this look wholesome? Also, the only thing I can eat in this photograph is the tablecloth.

I was really emotional when I wrote the last post-I think it's because I'm sad that I only have four days of steroids left (sob). Yesterday, I was having cramps and a lot of diarrhea, and I had a haircut appointment. I have short hair, which actually means I need haircuts more often, or my hair gets shapeless and frizzy. A few weeks ago I encountered a really pissed off baby robin (it was in the middle of the street, so of course I had to get involved. I poked at it with a flip flop I found in my car, which it attacked, but eventually it kind of hopped/waddled into a ditch). The bird was at an in between feathers stage-out of his (her?) big boy bird feathers, these little downy feather strands were poking up at odd angles, which is kind of what my hair looks like between cuts. It's less defined and looks messy. There are women who get their nails done each week, who tint their eyelashes and wax their lady parts and shoot toxins into their laugh lines. To each her own-I like to get my hair cut every month, and if I don't, I get kind of twitchy and do dumb shit like try to cut it myself, or wear unfortunate hair clips.


I really wanted to go to that appointment.


So I took an Imodium, waited at my house as long as I could, grabbed a plastic garbage bag in case of emergency, and booked it to the salon. An unfortunate start to the morning, but at least I didn't have an accident (of either the vehicular or colonic variety). My AAC is so freaking unpredictable these days; I used to get a rest day between explosions, but it's been pretty much every day this week. Imodium is also kind of tricky-too much can slow things down to the point of painful constipation, and too little might mean you poop in the car. Imodium pills are also really small, so while you an cut it in half, anything smaller means you end up with minty green colored pill crumbs. Basically, I think I took too much yesterday, as I was in a hurry to shut off the faucet and get out the door, but I have a feeling I'll pay for it eventually.


In the next two days, I have more appointments, and while I specifically scheduled them for the early afternoon, there still might be a few stressful rounds of "can I or can't I leave the toilet?!" that I have to play. There are times-say, when you're in the dentist's chair, getting a cavity filled-that you just want your AAC to cooperate, and where you don't want to grab a garbage bag and a change of clothes and go merrily about your business.


The weirdest part about yesterday, as I grabbed my keys and headed out the door, was that I made the choice to venture out into the world in the midst of an AAC freak out. I decided that the thing I wanted (a haircut) was more important than the reality of the situation, which was complete unpredictability. It's not often that the scales tip that way.


Today I got a call from a work friend, and it reminded me that in September, I have classes to teach. I have what you could consider daily appointments with my students. It's one thing to roll the dice with a trip to a salon; another, to do the same and have to stand before a group of teenagers.


I know I'm not ready to go back to work yet. Hopefully, whatever intervention I choose next will give me more options in September than grabbing a hefty (ok, Costco brand) bag and hoping for the best.

Post #37

Dude, if they actually printed snarky, hilarious taunts on toliet paper tubes I would have SO MUCH MORE FUN in the bathroom.

Hey guess what? I have Crohn's. You might be thinking, well, you have a BLOG about it, and you bitch about it on the aforementioned blog all the time, and you have a stable of doctors and assholish naturopaths telling you what to do about your AAC, so.....yeah. In other news, Starbucks is expensive sub-par swill and Tom Sellack has manly chest hair. I'll take things that are obvious for 800, Alex!


But even though those doctors have been officially calling it "Crohn's" for about 7 (!!!) months now, you have to remember that I have been dealing with a finicky colon for over 10 years. Even now, a part of me thinks, well, maybe this is just really bad IBS. Maybe it's a phase, maybe it's an allergy, maybe it's an infection, maybe, maybe, maybe....except: it's not.


I have Crohn's.


Today was a really bad day. Correction: today was a truly awful morning followed by a bad day. Not IBS bad. Crohn's bad. I have five days before I'm off the steroids. As I was running back and forth to the bathroom, this reality slapped me in the face: soon, my last pharmaceutical crutch will be removed, and I will be on my own with what is shaping up to be one very, very sick, unpredictable, AAC.


I am scared.


I am scared about the drugs I might need to take, and the side effects of those drugs. At the same time, I'm afraid that those drugs won't work, and I'll need to take scarier drugs. Ones that require transfusion alongside the chemo patients. Or ones that you inject into yourself at home. There's a "treatment pyramid," that ranks the various Crohn's treatments on a scale, from least to most toxicity. I've been at the top of the pyramid, afraid to go down. Now, as reality sets in, I'm afraid of how far down I'll have to go.


I have Crohn's, and I am scared.


All of those nourishing, safe-ish foods I was bragging about last night? Today my body couldn't get rid of them fast enough, purging them from my system, twisting my gut into painful knots (note to self: add grape tomatoes to the list of doom). The rest of the day was spent in a zoned-out haze. A  nap was taken. Fluids were consumed. My legs were cramping, and I didn't want to use the secret bottle of Gatorade hidden in my trunk, so I tried coconut water instead, hoping to get in some much needed electrolytes, the natural way! Unfortunately, coconut water tastes like regurgitated pond scum, so I ate a banana instead. It helped a little.


I feel sick and tired and apprehensive. I don't want to get off of the steroids, but if I need them, what does that say? It doesn't take a genius to realize that if a high dose of steroids put you in clinical remission, and a low dose brings back some (ok, a lot) of the symptoms of active disease, it's time to choose a stronger medicine you can stay on for the long term. This was what tapering was supposed to be about, although in my head it went a little differently. Instead of pointing to the need for actual drugs for my actual disease, I would be steroid free and driving to vacation in a red convertible (don't own one, but maybe that was my present for being symptom free! I'm very generous like that), stopping at each vista on the coastal highway and maybe taking a sexy al fresco bath on the beach, like in the erectile dysfunction ads.


Reality is biting me in the ass (which is already getting enough action, thank you very much). Tapering was supposed to buy me time to adjust to whatever the next steps needed to be-I just never fully reconciled myself to the fact that the next steps would be anything other than getting on with my life in a normal fashion. But I have work, and a long car trip, and a vacation, and somewhere in the background a normal life I haven't been living for far too long.


I have Crohn's. And it's not going away. And I need to decide, after a few months of respite, how I'm going to live with it.

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 #35: A comprehensive report, from top to bottom

Calm it down Sonicare-trust me when I say you're on the right end of things.

Before I discuss my butt, let's first list some things that make me feel old:

1.) The fact that Tia and Tamara Mowry (Sister Sister? anyone? anyone?) just turned 34 (thanks waiting room copy of People magazine!)

2.) The fact that on random employment forms, it's not out of the realm of possibility that I might have dependents

3.) And finally, the fact that I am officially being inducted into the old lady hall of fame with the BRAND NEW night guard I will be getting next month! It's going to be thuper thexy (that's how I'll be talking at night from now on).

So I went to the dentist today for the first time in.....a while. My old dentist retired, I hadn't found a new one, nothing was loose or newly crooked or turning grey-I figured everything was probably fine in molar land. I put it off, and like many things that are put off, it grew in my imagination into something that seemed bigger and scarier than it actually was. All of this other shit was going wrong in my body-did I mention the nose pap smear? Or the antibiotic ointment that I'm supposed to shove up my nose holes twice a day with a q-tip? No? Well there's that. And the diseased colon. And really, that was enough. But human bodies, and especially female human bodies, require routine maintenance. Deferring these appointments merely leads to a stressful appointment pile-up, and I'm trying to take better care of my entire body to create a more hospitable living environment for my AAC. Doing sick person math, I figure that if I stay on top of my other shit, this equals more time/energy to deal with the disease at hand.

My old dentist was like a stern father figure; picture sweater vests and a bad Bill Gates haircut. This new dentist looks like a shiny Nordstrom's shoe salesman with several advanced dental degrees. He's so....coiffed. And he's Brazilian! Everything he says, with his hint of an accent, sounds slightly celebratory. He has blindingly white, perfect teeth, an above average handshake, and a general air of confidence. I think I will trust him to jab needles into my gums (next week actually, when he fills that tinnnnnny cavity that is TOTALLY NOT MY FAULT).

Where was I going with this? Oh right, old lady night guards. I remember when I was growing up, I took great pride in the fact that I was the only one in my family without that particular plastic horseshoe. I also used to wait until bedtime to ask my parents pertinent questions, so I could watch them spit all over themselves. It's the little things, really.

So while there are some smooth spots on my teeth where I have done some grinding (not the sexy club kind), Brazilian dentist assures me that this is not an unusual wear pattern for SOMEONE MY AGE (oh Brazilian dentist, don't you see I'm YOUNG AT HEART?!). So unlike most of my family, I am really a predominant clencher rather than grinder. This can be stress related (the hygienist asked, is there anything particularly stressful happening right now? hahahaha), but in my case I think I was probably a clencher from the moment I got teeth. Since when I wake up my jaw often hurts (there is no way for that to not sound dirty, I'm sorry), and I have pain in my neck and shoulders, and my jaw kept popping in an alarming way during the exam, Brazilian dentist advised getting a bite plate as insurance against further damage to my joints. A few posts ago, I talked about stress manifesting itself in physical ways, and now I have proof! Sigh. With the exam, x-rays, tinnnnnnny cavity filling, and bite plate, I'm looking at $1,000 worth of dental work. Did I mention that I don't have dental insurance? It's a good thing I'm getting that bite plate, because I think I'm clenching now.

So, my teeth are somewhat sorted out, but my AAC is decidedly not. This has not been a great week in terms of colon explosions, and it's kind of feeling like the old days. Cramps are back. Bloating is back. Sometimes pain is back. And hello there noxious gas! These are not good signs. I feel like I'm backsliding down a sandy slope, and there's nothing I can hold onto, nothing I can do. I have 8 days left to taper, and then my AAC and I are on our own, and I'm not sure we can hold down the fort by ourselves. I see my doctor in about 3 weeks, so I'll have a week or two where I'm au natural, drug wise. This morning, after racing to the bathroom, I was so exhausted that I had to take a nap. I'm not sure what the biological basis for this is, but sometimes after my colon completely empties itself it feels like my body is so spent from the process that I have to set the reset button, sleep it off, and try to start the day again. It definitely feels like defeat to have to crawl back into bed at 10:30 instead of watching the View like a normal person.

Post #34: Don't stop believin'....

Happy 236th America! Luckily, today the explosions are only going on overhead, and not in my colon.

So in non AAC related news, I love the 4th of July. I'm watching the different shows on TV and maybe getting a little weepy over "God Bless America" and "Stars and Stripes Forever"....there is something about the combination of super shiny bright flashing lights and patriotic fervor that makes me want to hug a stranger, so sue me. I celebrated the day by shopping and eating picnic-y foods, like a good American.

One year, a friend of mine was working at a restaurant on the water, a location directly beneath the firework show. After hogging a prime outdoor table, ordering like 4 desserts and enduring the side-eye from the manager, the show started. I have never been that close to fireworks before (or since, actually). Every explosion ratcheted through my body, shaking up my molecules, every burst of light seemed to bypass my eyes and go directly to my brain. It was loud and overwhelming and scary and AWESOME, an onslaught of visual grandeur.

Outside people are letting off fireworks, because for one day they are legal here. Tomorrow, the ground will be littered with the spent casings of tonight's festivities, and it will smell faintly of smoke. I miss being a kid and running in dizzy circles with a sparkler, tracing my way through the darkness around family and friends, full of hot dogs and brownies and watermelon from the neighborhood BBQ. One of my favorite parts about watching fireworks is watching other people be transfixed by the noise and color and motion, their faces reflecting the lights in the sky, their eyes shiny and wide. I think I like all of these things because they are uncomplicated pleasures.

Very few things in my life are that uncomplicated, or pleasurable, now.

After Monday's festivities (ha), I have been feeling empty, as if everything my body needed was inadvertently purged. I've been eating more, drinking more, and today I finally feel "filled back up." It's such a weird balance to pursue-first you need to find food that will not make you actively ill, and then you need to eat an amount that will give you the protein and fiber and nutrients you need, but not so much that it throws your system out of whack again. One of my favorite well meaning questions that I get asked all of the time (SARCASM ALERT) is, "Are you sure you can eat that??" I get this every time I go to a restaurant with someone. I mean, I know my colon is unpredictable, but one bite of anything is unlikely to make me explode right there in the booth.

How I wish it were that simple-if the doctor (any of the doctors!) had given me a concrete Crohn's diet, a simple way to navigate around my plate and avoid stupid mistakes like Lentilgate 2012. Such a thing does not exist. Instead, it's mostly a constant, frustrating battle to figure out what I can tolerate, and what I need, and trying to connect the two.

I'm going to go watch some more fireworks-they're doing the star shapes now! And playing Neil Diamond! I'll take it-easy, uncomplicated distraction. Loud happiness. Ok, now they're busting out Journey-it's on.

Happy 4th!

Post #33: Story time with PICTURES. oooooh.

 Let's have a story with PICTURES!

Intro: Once upon a time, a friend came over with the following:

  +  +

She mixed together the first two ingredients, and then gently spooned the mixture into fresh, organic, basil leaves for a light, gluten-free appetizer.

It looked like this:

 

All I could think was, this is like vegetarian caviar! And we're so fancy, eating it out of HERBS.

Ok, not that fancy-there were flip flops involved. But! Eating delicious food, socializing-it felt nice, and normal. I was already planning on making the dip for a garden party cocktail thing, if I were to have one of those, for some reason.....

And can we talk about lentils for a second?? I have been avoiding high fiber foods and foods with an outer, undigestible "skin" (beans, corn, lentils). I read one IBS/Crohn's cookbook that suggested removing these "skins" before cooking-but the thought of standing over the counter popping chickpeas out of their casing was too depressing to contemplate. But yesterday, I remembered how much I miss TEXTURE. The slight bite of the outer shell, the creamy, smooth interior, the musky, smoky taste of the lentils....

I ate a lot of it. For lunch and dinner.

And then this happened. In this picture, the bridge represents my colon, and the runners represent the lentils. It wasn't this exciting, and it didn't take 5 hours to complete (actually, it kind of did), but everyone did make it to the finish line! And off the bridge. If you get what I'm saying. I think you do.

And then I took a 3 hours nap, drank a lot of fluids, and felt sorry for myself.

THE END.

So, what did we learn from this encounter? Lentils and fiber and "skins," oh my! All things that make my AAC....angrier. As I continue to taper, and pretend things are stabalized, I somethings forget that there is a new reality. I can't let myself get fooled by a few good days. There are foods that are definitely more off-limits than they were. A bunch of freaking lentils sidelined me for an entire day. I'm exhausted.

I guess lentils, for now, go on the fuck you food list. Lentils, I'd like to introduce you to fried foods, red meat, cruciferous vegetables, dairy, excessive amounts of avocado, black beans, high fiber cereals, and Indian food. I hope you're all very happy together, because you're making me miserable.