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 #99: I got 99 problems and my AAC is most (but not all!) of them

I am grumpy cat. I have embraced it. 

GIANT DRAMATIC SIGH. 

Do you know exactly what I needed this week?! A NEW medical problem. I was thinking, you know, my schedule looks pretty clear, let's add A NEW PROBLEM TO THE MEDICAL PILE. I don't see enough doctors on a weekly basis! I don't take enough weird medications! I don't get enough bills in the mail! I AM CLEARLY SLACKING OFF IN THE WEIRD MEDICAL PROBLEM DEPARTMENT. 

Ahem. 

A week or two ago I noticed some painful bumps on my head. I assumed, what with the night sweats and Prednisone (they don't mention that your entire body will produce more oil, your skin will freak out, and you will break out like a 12 year old. Fun!) that I just had a little head acne. Gross, but not alarming. Then.....the bumps colonized. First, there was an outpost on the back of my head, at the bottom of my hairline. Just one side. Then both. Then both temples, and finally....everywhere. 

I decided to cut my hair super, super short (seriously, super short-I keep wanting to bust out "I dreamed a dream" and clutch my shorn locks), thinking this would help. No dice. 

I finally went to see my dermatologist, who is a million years old and kind of hilarious, in that I always end up passing out because he discusses my gross skin problems in detail as he pokes at them, despite the nurse and I telling him to STOP IT because he's just genuinely fascinated by the details of his trade. Last time, I told him to pick a more neutral topic, and he talked about duck hunting as he removed something. It kind of helped. 

He took one look at my weird scalp and said, hmmmm......and put on gloves. Never a promising start. Apparently, I might have a staph infection. Of the scalp. I DIDN'T KNOW THAT COULD HAPPEN. Right now, in a lab somewhere, little samples of my weird rash are growing in a petri dish so that we'll know exactly what we're dealing with. He also swabbed my nose (realllllly thoroughly-the kind of nose swabbing where it feels like they touch your brain a little) and depending on what the tests reveal, I'll probably have to go on some antibiotic that will fuck with my AAC and generally make my life more miserable. 

All of this is a disgusting prelude to the fact that more than anything else-the Prednisone (tapering off it-last week! whoooo!), the whole partial obstruction bullshit, the MRE, the liquids, the pain, the bowel stuff-THIS is the medical problem that is making me sad. 

I feel dirty and gross. My head itches and I have to use this shampoo that makes me smell like an aged lumberjack (smoky and pine-y) and I am afraid of infecting someone (not that I generally rub heads with strangers, or acquaintances, really). Maybe this is so demoralizing because the problem is visible-I mean, I guess it just looks like I have some acne around my hair line so I should decrease the drama by about 65%-but still. 

I spent all day moping around and wearing a hoodie so my gross head didn't come into contact with anything. 

It's just one more thing on top of everything else, and maybe it was the one thing that caused the whole pile to tumble down. Whatever the case, I am feeling overwhelmed. I didn't need any new projects. I had enough medical problems that were occupying my time, thankyouverymuch. 

Sigh. 

Grumpy cat over and out. 

Post #91: holla holla holla

Here, a brief update told in picture and song:
 

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

SOUP......SO MUCH SOUP
 


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


Haha, me too! Just kidding.

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

Finally:

Mmmmm, expensive yuppie goodness

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

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

Post #90: Spa day!

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


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

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

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

Post #84: Brought to you by the letter B

Most. Depressing. Advertisement. Ever.

Can you imagine if Santa really did have Crohn's? He'd have to tow a port a potty behind the sleigh....although technically he would have access to all the bathrooms in the world. It seems especially cruel to leave milk and cookies for IBD Santa, when what he would really want is candy coated Imodium. If you're on the naughty list, maybe IBD Santa clogs your toilet! Or poops in your stocking! Ewww. Annnnnd, we're done.

Why is this post brought to you by the letter B, you ask? B stands for bloated, balding (one baldish spot up front, now covered by bangs but still freaking me out), bitterness, bitchiness, BIRTHDAYS, and bananas (bananas are easy on your stomach, FYI).

As you may have guessed, I'm steroid free, and my AAC is not loving it. Add to the mix a cold I picked up from some random lady who was hacking next to me during class at the gym, and a time of year that usually makes me introspective and moody, and whee! Welcome to the party.

It's pretty much my one year Crohn's anniversary (yeah! said no one). I'll have a colonoscopy early next month to see where things stand, but I pretty much know what my next step is going to be.

hahahahaha so true.

This year the prospect of planning a "fun" birthday is especially depressing. Last year, for my big milestone birthday, I was feeling like crap, and promised myself I'd plan mini-celebrations throughout the year to make up for the fact that I could barely drag myself out to lunch on the actual day. I thought I would be feeling better, and I looked forward to "getting back to normal." It's been a year now, and I still feel like crap (my stomach is very loudly agreeing with that last statement).

With the exception of a few good stretches brought about by my favorite little pink pills, I'm pretty much where I started. I've had more tests, I have more experience, but I don't have anything approaching a workable solution for the problem. This past year has been full of pain, frustration, fear, and uncertainty. It has also been filled with small wins, and some bigger ones, including the fact that I'm still standing despite all the shit that's been thrown my way in the past 12 months (I mean that metaphorically, there wasn't a roving band of monkeys throwing feces at me. Just to clarify). I'm here and I'm still hopeful. That in and of itself is something to celebrate with (dairy free, low fat) cake.

So I have a birthday coming up, and a colonoscopy, and the fresh slate of a new year (I wish it could be that easy-Crohn's was soooo 2012. Peace out IBD in 2013!). I don't know what's in store for tomorrow, let alone the next year, but I still find myself making plans, listing things I want to accomplish. I hope I will be able to cross some things off that list. I hope I will be able to have twice as many mini parties to make up for the past two years of shitty birthdays. I hope I will spend less time on the couch, bed, and toilet and more time out in the world. I hope-I guess that's the main thing. I still hope.

Post #49.9: I brake for fake crab

 

You win this round supermarket sushi....

Yesterday, I was paying bills and shopping and going to appointments and going to the bank and getting gas (for my car, I feel like I have to specify on this blog) and being social and returning phone calls and writing emails and giving advice and NOT napping and making plans and doing laundry and laughing and buying presents and EATING ALL OF THE THINGS.

I had a great three days on steroids, and I got a little cocky.

A lot of carbonated beverages, supermarket sushi, chocolate sorbet, deli salad, and almonds later, I paid for my hubris. You know that stupid saying "a moment on the lips, a lifetime on the hips?" I believe the Crohn's version of that ditty is "a moment on the lips, a lot of bathroom trips!" Or, more accurately, a lot of painful uncomfortable bathroom trips wondering WHY DID I NEED TO PUNISH MYSELF WITH  BY EATING _____________(insert offending food of choice here)!?

As I shuttled between bathrooms (variety is the spice of life) this morning, trying to take deep soothing breaths as my bowels twisted and snapped like virile rubber bands, I pondered this very question. On the haunted toilet* I lamented the fish stew I ate out at a restaurant. In the vindictive spider powder room** I bemoaned the waffles that seemed like such a good idea the morning before.

I was looking at my steroids, and the ensuing regularity, like a vacation from Crohn's. I deserved a break! And on vacation, who sticks to white bread and Gatorade?

I felt normal. I had energy (granted, a little too much energy, but who would compain about that!? I was getting shit done). I had the time and mental clarity to do the things I enjoy, and those things include eating. I remember thinking to myself, this is how it should be-this is what I am working towards. This is what I hope is possible again. I thought that this little interlude would give me the inspiration, the motivation, to stick with the new medication through all of the terrible side effects, in the hopes of getting to this place without steroids.

And this morning, it all came crashing down, in a most painful, explosive fashion, and I was left exhausted. Did I just ruin steroids for myself? I am such a moron. To explain how I got to this place, and how I may or may not have broken the steroid's magical ability to tame my AAC, let me try to explain how it feels when the steroids work.

Imagine that you've been sick for a month or two. You have no energy. You spend your days sleeping, eating things that are beige, and watching the new crop of daytime talk shows that are jostling to replace Oprah (I'm looking at you Marie, Ricki, and Katie, not to mention Anderson, Jeff Probst (??), and Nate. Side note: Katie Couric is a serial blinker. It's seriously exhausting and distracting to watch those eyelids fly. Someone get that chick some drops!). There is pain, nausea, and fatigue. There is considerable time spent in the bathroom. Early in the day, you are spent. Sometimes you're dizzy and your muscles quake, and you feel breathless. There is dehydration and heartburn and some super fun medication side effects that make you feel bloated and sweaty and wrong.

That's about right. Replace beer cans with pill bottles and add a sports bra.

THEN. Oh, then. You take a handful of the good stuff:

A spoonful of steroids make the Crohn's calm right down, oh, the Crohn's calm right down, the Crohn's calm right down....

And suddenly, it's like someone shoved a spark plug up your ass and you turn into this:


I can run on the beach! My quads have DEFINITION. I CAN EAT ALL THE THINGS!

If you've been miserable for long enough, your brain can be excused for wanting to jump on the GOOD HEALTH NOW, COME AND ENJOY IT! band wagon, even if a small part of you knows the medicine might be making false promises.

If you think that I'm overstating the change-from Homer to bouncy chick in a matter of days-that's really what it's like. It's overwhelmingly deceptive. Every part of you wants to believe that the preceding days (ok, months) were a bad dream, and you've finally been restored and rebooted. Every part of you wants to use these days, enjoy them, because steroids are a limited time only hall pass from the crap that is waiting for you back in real life.

So I guess the point of this post, if there is one, is that today was a bad day, and I both blame myself for making it that way and understand why I did.


*it makes haunted noises when you flush
**a medium sized spider has been doing gross spider laps around the edges of the ceiling but comes to stand over me when I need to do my business, thus making me fearful that he will drop directly on my head and causing awkward pants-half-mast crab walks to the haunted toilet (not to be confused with the passive aggressive spider who used to live in the mailbox)

Post #49.8: And now for something completely different....

I am thankful for indoor plumbing and that I don't have to poop in this haunted outhouse.

So, it seems kind of douche-y to write about my colon today.

I was watching the news, and there was one quick soundbite about 9/11-a brief montage of memorials at all of the different sites. The President held his wife's hand, and they bowed their heads in a moment of silence. Family members read the names of those killed in NYC. I was struck by the brevity of the coverage, and also by the fact that for the first time, politicians were not allowed to attend the memorial at the site of the attacks. It was, as the newscaster said over and over, becoming a day of private remembrance.

Later, I read a blog where a teacher discussed her feelings when her school held a moment of silence this morning-and she realized that none of her students were born when the towers fell. They had no real emotional connection to the event at all.

Every time there would be a news story about JFK, my mom would always say, "I remember exactly where I was that day." I used to make fun of her-you remember exactly where you were? What were you wearing? What were you doing? And now I know exactly how she felt. I don't feel disconnected from what happened. The pictures of that day, the towers falling, the dusty workers running away from the devastation, supporting each other, the paramedics and policeman and firefighters running towards it. The lines of people waiting to donate blood. The twisted metal beams set in irregular geometry at the site, like disjointed fingers pointing towards the sky. The horror-plain horror-of the newscaster's voice when the second plane hit. I do remember exactly where I was that day. I remember what I was doing, and who I was with. I remember how I felt, far from home and away from family.

It's a moment in time that still squeezes my heart.

So today, instead of talking about my AAC, I am going to make a brief list of things I am thankful for. A few of the Crohn's blogs I read do variations of the "Thankful Thursday" thing, but as useful an exercise as that would probably be for me, I can't bring myself to do it. But today, I think it's important that I try.

In no particular order, I am thankful for:

• a solid group of people who support me, no matter what shape I'm in
• patient friends
• health insurance
• the ability to pay for that health insurance
• things that divert and amuse me (TV, the six million magazines I subscribe to, hilarious neighborhood animals, postcards and letters)
• blogs, which make me feel less disconnected from the world
• this week of respite, courtesy of my steroids
• access to good doctors and nurses
• AMP's
• my living arrangements
• having the luxury (and there's no other word) to focus on my health right now

That is a small start to what should be a long list. It's hard to remember when I feel like crap that I am simultaneously very fortunate to have the help, support, and resources I need. Maybe there's something to that "Thankful Thursday" crap after all.

Post #49.7: Old dog, old tricks

I do not have ambivalent feelings about this drug.

I know that title kind of makes me sounds like an elderly prostitute, but I'm not talking dirty here-I'm talking STEROIDS.

There was a plan in place-a plan to wean me off of steroids and replace them with a medicine I could take long term. My AAC, however, had other ideas, and a definite preference for the little pink pills (not lady Viagra-that's what color my steroids are). I weaned, I flared, I bought the t-shirt, and now I'm back right where I started.

The current theory (and really, medical opinions are three steps up from a Crohn's magic 8 ball, if such a thing existed) is that the new med was "exacerbating" (great word!) my flare, and I need to go back into remission before I try it again.

Let me explain right now that it's hard to keep a single train of thought going here, because my brain is like a coked up hamster on a greased wheel (I just made that up! Spin wheel, spin!).I've been on the steroids for 4 days-96 hours-and I've felt better than I've felt in months. I didn't take a nap today. I am HUNGRY. My colon explosions are reduced. I want to go places and do things. All day I've been remembering things I've read and watched, seen or heard, throwing them into conversation like I might forget them all tomorrow. I'm making lists in my head, lists that don't seem daunting, but doable. I might go out to eat. I don't feel spacey or run down or exhausted. I can feel my mind start to make connections, everything snapping back into place and fitting together like Lego's.

It feels good.

You know what else feels good? Being off the new medication. My hair stopped falling out. My weird dreams are gone. My stomach doesn't hurt. I'm not nauseous all the time.

And yet this is a bittersweet interlude, because I know it is temporary. It's a cold realization, to know that 3 little pink pills can patch you up, but only for a short amount of time. I feel like I'm on vacation from my disease.

I'm supposed to call my doctor as soon as I feel like my symptoms are under control again, so I can start up the new med (again). But frankly? This is my brief, fleeting opportunity for a little normalcy, and I might take some time to make that call.

I have some business to take care of, and some living to do, before I head back to the grind.

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 #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 #32: My yoga pants are pretty tight....



Is there no option C??

Quick update: taper taper taper taper, super tired, taper taper taper.

Now you're all caught up.

In other news, I have lost my give-a-shit. I wear inappropriately tight yoga pants to the grocery store. I watch TV all day. I eat the same foods over and over because I'm too lazy to try new things. I don't wear makeup, even when I had what I am convinced was a small boil on the side of my face. I get irritated if I have to wear real pants. I have a somewhat relaxed attitude towards bathing (still mostly every day, it's not like I'm living in a pit of my own filth). I shaved my legs for the first time in a month yesterday, but only because I was bored.

I wouldn't call this depression. This is more like focused exhaustion. If I'm not going anywhere, and I'm tired, why should I wear real people clothes? I should save that energy for things like meal preparation and reading TMZ. I COULD moisturize, put on sunscreen, dab on coverup, set with powder.....or, I could use that energy to go to the grocery store with my giant boil shining like a beacon, and hope that my long bangs cover that mother. Again, I just don't give a shit.

And yet, I know I need to marshall up some give-a-shit, because I need to take care of my AAC. I need to make doctor's appointments and get blood work and get a bone scan and start taking my freaking vitamins and come up with a plan for when this taper is over (in about 2 weeks). There are a lot of out of town guests coming. I need to send out late birthday presents. I'm going on vacation for 2 weeks. Eventually, I have to go back to work.

But I am so tired.

In the past two days, I told two people I had Crohn's, and talked about it with a relative, and they all said the same thing: aren't you lucky that there are so many good treatments out there for Crohn's? One talked about her friend's son getting infusions every few weeks. Another, who is a pharmacist, said, "well, there are so many good tools on the market." A third told me about her friend who had Crohn's and had just had a baby, and how when she finally found the right medication she "got things under control."

If my give-a-shit was in full force, I probably would have been all uppity and annoyed about their cavalier attitude toward my colon-just take a pill, all will be well! But part of me wonders if all of this medication avoidance is a futile pursuit, and if I shouldn't just take the freaking pills.

If anyone has seen my give-a-shit, let me know-I need it to make some important decisions.

Post #22: Swimming in jello

Oh lady lion, I so understand the feeling. I would join you on that stump if you wouldn't eat my face off.

This is what you get when you google "auto-immune memes." Not what I was looking for, but so very appropriate. Good job internet.

So far, beyond a few crying jags over stupid shit like lifetime movies and sad health documentaries, I haven't really experienced the moodiness or emotional changes that can come with steroids. Now maybe I'm getting all of it in one week? I just feel weird, and strangely passive, and indecisive and kind of vaguely anxious and.....weird. I'm sure that clears up my emotional state. I taper again next week (sigh) so maybe that will help?

I don't think I've talked about it here, but there's this scene from an old school Tom and Jerry cartoon where they find some magic beans, climb the beanstalk (naturally), and end up on the giant's dinner table. They are small and the food is HUGE. Antics ensue, and somehow in the chase the mouse ends up in a giant jello mold, kind of suspended in the dessert. He swims through it and when he looks out, the world is orange tinted and distorted (jiggly, I guess? It is jello).

I am in the jello. Everything feels sluggish and slow and harder than it should be. I think this is due partly to sleep issues, partly to my AAC making me feel run down, and maybe a little because of the drugs. It's so hard to delineate-is this IBS or Crohn's? Steroids or Anxiety? Feelings or Exhaustion?

Anyway. Yesterday, even though I kind of knew it wasn't a good idea, I went blonde. Like, super blonde. And now I'm going back and forth about whether I like it not. It's hard to say. But the fact that I willingly let someone strip the color from my hair even though I was unsure if I wanted it to happen in the first place is kind of telling about my life right now. I just wanted to see what it would look like, and I didn't really care that much, and at least it would be different, and what else do I have going on? It's easier to let someone else make the decisions every once in a while, even if you end up disliking the results.

Plus, it's kind of the only drastic outward change (short of wearing a sparkly tube top and busting out of some ho-tastic short shorts) that I can make right now. I can't get anything pierced. I can't get a tattoo. Even going to get a pedicure is like a code yellow situation (germs! must. protect. immune. system). So naturally the best thing to do is go for a Debbie Harry/Betsy Johnson color to match my pretty sedate fancy soccer mom hairdo. EXCELLENT IDEA.

Sigh. I think I need something else besides hair adventures and doctor's appointments to fill in my week.