Post #100: In which Crohn's steals my ball (again)

EVERY TIME. 

In the picture above, I am Charlie Brown. 

The football is lack of pain; hope; happiness; normalcy. 

Lucy is Crohn's. 

Fucking Lucy. 

Day after day, I keep kicking the ball, thinking that TODAY WILL BE THE DAY that I connect, and every day I fall flat on my ass, and am stupidly surprised when the wind gets knocked from my lungs. 

Why should pain surprise me at this point? Why should it surprise me that it's in a different place this time? Why should it surprise me that sorbet and sprinkles (apparently, sprinkles are like nature's little thumbtacks once they hit the colon) would throw my carefully calibrated diet completely off its access? 

And yet: every time it happens, every time the ball gets yanked away at the last minute, I feel it as keenly as if it's happening for the first time. I guess it's a survival mechanism, to disregard the probable and willfully ignore the potential for pain and fear and discomfort. It's a choice I make every morning. How else to live out the day? 

Suspension of disbelief-it's my morning coffee. 

Today was a bad day. Tomorrow? I'll kick that ball again like it's the first time, and hope for better things. 

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 #98: Well played, colon, well played

I chugged these like a boss. 

Oh AAC, you tricky little minx. In an attempt to figure out why my colon was causing me so much pain, and why the various hardcore medications I am currently ingesting/injecting aren't allowing me to eat normal foods/drastically improving my symptoms, I went in for my MRE fully expecting to get some clear answers. I should know better by now. 

Confidential to the picture above: "berry smoothie" my ass. Funny story, I was running super late to my appointment (random traffic caused a 20 minute trip to take over an hour), so when I got there I was ushered right back and handed two ice cold jugs of barium-y goodness. As my nurse was shaking up jug #1, another nurse walked by and said, "5 minutes, ok?" Thinking she was talking to me, and kind of frazzled from being late, I burst out with "I can't drink these in 5 minutes! I'm not a frat boy! THIS IS NOT SPRING BREAK!" which caused both of the nurses to stop in their tracks and look at me like I was insane. 

After they finished laughing at me, one nurse explained that indeed I did not have to drink the two jugs o' fun in 5 minutes, and that I should in fact "sip them leisurely." The other nurse leaned in and said, "Confidentially? Those frat boy types really do try to pound these-it's like they just open their gullets and pour it down!" AMPs for the win. 

Fast forward to my doctor's appointment this week, and guess what? The MRE didn't provide any answers. To be clear: 

No new or worsening problems: AWESOME
No explanation for pain/continuing symptoms? less awesome

The doctor still thinks there is a partial obstruction of some kind, or some scar tissue, or some inflammation that is causing this. Solution? ANOTHER f-ing colonoscopy, with the intention of inflating a balloon in my AAC (dilation! like a cervix! but with less baby!) to widen the narrow part. I couldn't make this shit up. 

I was telling a friend about the procedure, which definitely qualifies as WEIRD and insane and something you don't think they could possibly do to a human body until they are telling you they are about to do it to yours, and she replied, "I would think that would be really uncomfortable when you wake up." It took me a second to realize she thought they were going to leave the balloon in there, like I would permanently have a "Congrats on the promotion!" balloon wedged up my ass. I laughed in my head for a long time about that one. 

So that is happening at the end of the month, which means I'm back to my favorite activity: waiting. Waiting! And trying not to obstruct. 

Before the appointment, I was sweating with anxiety, thinking about all of the things the MRE could show and all of the interventions I might need; after, with some of those same interventions hanging over my head, I only feel relief and......I'm not sure what else. Maybe because nothing is clear, maybe because there are still so many more questions than answers, I am hesitant to actually invest emotions until I know what course of action I will be taking. I think I am in a phase of managed expectations, which is where you end up when you get your hopes up too many times, and then lose hope too many times, and generally exhaust yourself with the up-and-down nature of chronic illness. 

I know how to do this part. I will wait, and worry, and distract myself until the next test/procedure/step, and then I'll manage my expectations all over again.

Post #97: I'll be the girl in the tube

Said no nurse to me, ever. 

Haha, nurse wood. 

So: mission MRE, completed. The hospital where I had the procedure just completed a fancy schmancy upgrade of their Radiology unit, which means the MRI suite was pretty posh. Soothing, back-lit pictures of verdant fields on the ceiling. Shiny new MRI machine. Slick wood floors, un-scuffed walls, that new car smell (well not really, but no antiseptic hospital smell either). Not that it mattered, really, as I was inside a loud whirring tube for the better part of an hour, but the upgrade increased the hospital's capacity by a lot (more machines! whooooo) so there was less waiting around after I finished my barium juice. 

Getting an MRI and a CT scan are two very different animals (I had a lot of time to think in the tube). When I get a CT, I feel like the blood in my body swirls and sweeps and rushes up and down in a current, like a half empty bottle of soda that has been forgotten under the driver's seat and rolls back and forth while you drive (just me?). An MRI feels like the cells in your body are being excited, like pasta just as the water starts to boil. For whatever reason, it feels a little like being simmered. You can feel your body heating up. 

It's not painful, or even unpleasant, but like so many medical procedures it can just be followed under WEIRD. It's a weird and unnatural feeling. When they inject the contrast, and your mouth fills with the taste of what the nurse has accurately described as a combination of paint thinner/nail polish? WEIRD. The fact that they have to strap what looks like a teenage mutant ninja turtle shell onto your stomach to get a better picture of your intestines? WEIRD. The fact that you are being shuttled in and out of a giant magnetic machine, easy listening being piped into your headphones, while a nurse gives you breathing instructions (STOP BREATHING NOW)? WEIRD. The whole thing is just weird. Amazing, and weird. 

As I was being slid into the tube, I had a momentary freak out, which I think is natural when they strap down your arms, cover you with a weird turtle shell thing, tell you not to move, and shoe-horn you into a loud, enclosed plastic cylinder. The give you a panic button (which the nurse let me squeeze-it sounded like an old-timey car horn, like on Chitty Chitty Bang Bang), but after a few seconds I realized that for the next 45 minutes or so, someone else was taking over my Crohn's. All I had to do was lay there and breathe. My bowels were coated; they injected something to slow them down; my IV was in (good job veiny!); I didn't have to worry or wait or think about it in any way. So I took the break, and it was nice. 

Then I came home, the bowel-slowing-down drug wore off, and I had explosive diarrhea all afternoon. But it was nice while it lasted. 

I meet with my doctor next week to discuss next steps. I am full of drugs (so many drugs!) and side effects and anxiety, but mainly I just want a plan. As I said before, I am worn down with waiting. It's not even a questions of losing patience; that isn't a concept that really applies here. I am worn down to the point where I  am afraid to have expectations. 

Whatever happens next week, I hope that I at least find some momentum. And, you know, a better solution for this whole Crohn's problem. And maybe a puppy. FYI: I would totally settle for the first two. 

Post #96: Super secret spy responses for people with dysfunctional colons

"What are you up to these days?" "Oh, you know, the usual. International dolphin show jumping. NBD."

Hey, guess what I'm up to this week? THE SAME THING I WAS LAST WEEK. Waiting around for this medicine to kick in, or to get that test done, or meet with the doctor. The usual. "The usual" also includes eating foods that are mushy and/or drinking meals that are liquid, watching copious amounts of daytime TV, worrying about the foods I just ate, taking too many naps, wasting time online, wasting time in the bathroom, drinking the body weight of my show dolphin in liquids everyday, spending more time in the bathroom, making to-do lists and then being too tired to do them, organizing my pills so I don't forget to take the right ones at the appointed times, googling what pain relievers I can take at 3 in the morning when I'm in pain.

You know, the usual.

My usual is sad.

I try to tell myself that this is a temporary state, that the day will come when I'll have the energy to get my taxes together or take a shower or go out to a movie or go out to EAT, but today is not that day. Yesterday, and the day before that, and many days before that were also not that day, and it's wearing on me.

Everyday people reach out, over email, on the phone, on gchat, and always start by asking me questions I have no good answers for:

• What are you up to lately?
• What have you been doing?
• What's been going on?
• How are you feeling?
• How's your day going?
• What's the news?

I have been up to nothing. I have been up to WAITING. That is what is going on. I have no better news than yesterday, which looks pretty much like today, and probably a lot like tomorrow (hopefully-lack of progress is better than backsliding!).

The frustration is on my end-I don't blame these people for sticking to the social script and asking normal, thoughtful questions regarding my health. I tend to go one of two ways: either I say, "Not much to report, same old same old" or "Meh. How are YOU doing?" and flip the script. It's easier territory for both of us.

But for people I haven't talked to in a while, it's especially disheartening. Maybe I last talked to them a month ago, and the answer is still the same. Let me provide a sample conversation to illustrate the point:

Person: I haven't talked to you in a while, what's been going on?
Me: Oh, you know, same old same old. Crazy colon times up in here! How's the baby?
Person: Oh, little Paxton said his first word! It was "Volvo"-We're teaching him Swedish. His older sister just started super advanced Harvard Pre-K and would like to sing you a song she learned in Vietnamese in her play group last week. Work is good, I got promoted. We're going to the Bahamas next month with the whole family, so that should be fun. I'm going to run a marathon and I just whipped up a batch of vegan carrot cake muffins and I started a class at the community center to learn casual French flower arranging. So really, what have you been up to?
Me: EATING BROTH AND WATCHING MURDER SHE WROTE, ARE YOU HAPPY NOW!?

Seriously, how can you compete? I am stuck in waiting mode. There is nothing glamorous or interesting or noteworthy about waiting mode. You just wait.

Therefore, because I am sure there are others in the same predicament, I have devised a clever system of super secret conversational responses for people with dysfunctional colons in order to maintain dignity and provide much needed interest to common everyday discourse.

Observe:

What you actually did: tried to stay awake while reading Martha Stewart Living Magazine; fell asleep during the riveting section on planting spring bulbs; ate a Popsicle.

Super secret spy response (SSSR): Did independent research on local horticultural trends; drew diagrams for the Elizabethan herb garden you plan to plant in the spring, according to historically accurate descriptions from the time; took a break from your work to eat a light lunch that was high in antioxidants (the Popsicle was chocolate, ok!?).

Let's try again:

What you actually did: Peeled vegetables and dumped them into a pot with a whole chicken to make broth. All of the washing/peeling made your already dry hands crack and bleed; now they also smell like onion and garlic. Hooray! This was exhausting, so you took a nap. When you woke up, you ate some of the broth with soup crackers and watched the Travel Channel.

SSSR: In preparation for your upcoming travels (to the doctor! many doctors, actually!) you watched a riveting documentary on the preparation of native ethnic cuisines on PBS, and then used your superior knife skills to re-create a dish you saw (from memory!). After your morning of labor, you enjoyed a nourishing repast and then treated yourself to a much needed spa ritual with herbs and berries sourced from your backyard apothecary (you spritzed your cuts with bactine and called it good, whatever).

One more!

What you actually did: Went to the pharmacy to pick up more drugs, where they recognize you by name. Went to the grocery store and bought seventeen protein drinks (and some Gatorade!). Came home and realized your hair was flattened to one side (as though caught in a gale) and one half of your face was red because your had fallen asleep with your head wedged between the couch cushions (again) before going out. Decided taking a shower now was kind of besides the point.

SSSR: Because you care deeply about keeping your shopping dollars local, you supported your local businesses and developed relationships with local shop keepers (the drugstore chick? right). You experimented with the latest avante garde beauty trends coming down the runway for spring, but ultimately decided to stick with the natural look, which suits you better anyway and also helps to conserve water, energy, and the ENVIRONMENT (screw you showers!).

Also, any of the following can be employed when the real answer was "spending time in the bathroom":

Started re-reading a classic
Went for a brisk walk
Nursed a baby robin back to health
Started a neighborhood recycling drive
Attended a clothing swap
Cuddled a panda
Went to a "insert name of obscure band here" concert
Chopped firewood
Studied the migratory patterns of Canadian Geese
Planned your next trip to New Zealand
Made your own mozzarella
Herded some goats
Placed second in the 5th annual Dolphin Show Jumping Classic in Dubai

I feel better already! Now if you'll excuse me, I think I need to head out for a brisk walk (ha).

Post #95: Meerkatin' it up

These meerkats are perfectly expressing both my general attitude and  "I have a pain in my colon"  position. 

Here's the thing about Crohn's: you can be having a perfectly normal  (well, "normal") day and suddenly, at 3am, your AAC oh-so-politely interrupts a perfectly sound sleep to express its displeasure. It's kind of how my mom used to wake me up for school. Most moms might slip into the room quietly, sit down on the bed, perhaps lovingly caress your hair and whisper, "time to wake up and greet the new day,  my most perfect treasure!"

My mom would turn on the lights and grab my ankle. Let me tell you, it's disorienting to go from sound sleep to full light and someone tugging on your leg. This is why I got an alarm clock in the 4th grade. This is also how my AAC wakes me up at night: not with a slow dawning of pain, a courteous twinge or two, but a full on onslaught of sensation. Asleep, then awake: not in pain, then in pain. 

I'm back on the full dose of steroids (yeahhh! but really, not yeah), and I should be eating f-ing real food by now, but instead I was thwarted by some lactose-free tapioca pudding WTF. I calculated, and I haven't had a "normal" meal in 23 days. If I'm using a lot of the word normal in quotation marks, it's because the definition of normal is constantly changing. It's stressful. And at 3am, when you are woken and surprised by pain you were not expecting, it's hard not to wish for the "normal" you had yesterday, which could still be crappy, but at least was not as painful. 

Anyway. 

I feel like I am having some emotional constipation about this most recent episode, about the stress and the pain and the uncertainty, and I think some of that can be chalked up to fatigue. But one emotion I can reliably access is my old friend annoyance: that's right, it's time for another round of "stupid shit people say about my AAC!" Because there's nothing like dwelling on the stupid shit other people say to deflect attention from you own emotional state (#avoidance). 

Person 1
I go to visit a friend who knows all the gory details of my AAC. I explain the situation to her. She looks miffed. 

Me: Why do you look pissed off? 
P1: I just think......I think they should be doing more for you. 
Me: Who? My doctor? I think he's doing pretty much everything he can. 
P1: Well, I don't. They should be helping you more. Like, with your diet. 
Me: Uhhh, I'm pretty much doing the broth thing. There's not much to work with. 
P1: Well, exactly! I can't believe there isn't more you could be doing to help heal yourself and make yourself feel better. 
Me: Food makes me feel sick. I'm not sure now is the time to be trying new diets. Plus, you know, doctors aren't into the whole "diet affects health" thing. 
P1: EXACTLY! How stupid is that?! (I don't totally disagree with her, btw). How could what you put in your body not affect the way you feel? It makes no sense. 
Me: Well, now is not the time for a drastic change. I will stick with my broth and hope nothing gets stuck in my business. 
P1: I just think it's been going on for too long, and there must be something you can do to make yourself feel better. 

Subtext: YOU ARE DOING CROHN'S WRONG. Obviously, the foods that you are eating, the ONLY ONES YOU CAN TOLERATE WITHOUT PAIN, are incorrect. Because I am currently trying this green juice recipe I heard on the radio, I am a nutritional expert. 

Person 2: 
Called to check in on me; I provided an update. 

P2: You're still on a liquid diet?! I don't think I could handle that. I mean, not to be able to eat solid foods? I think I would JUST DIE. 
Me: Uhhh, well....ok. I mean it's not like I have a choice about what I'm eating-I'm just trying to avoid pain. 
P2: But still, no solid foods? For almost a month? I don't know how you do it. I would just DIE. 

(thinking is my head: WELL OK WHY NOT JUST GO DO THAT THEN). 

Subtext: Your life SUCKS. What I really wanted to say was this: pretend that everyday, you had to poop out a lime. Like, push it out your entire digestive system. That would hurt just a tidge, no? Now let's say you could just drink the juice instead while your digestive system heals. Lady, you would be drinking that shit by the gallon and not be pining over a Big Mac. For serious). 

Person 3,4,5: I've hard this variation like two or three times this week. Here's one of the actual conversations: 

P3: Still on the liquid diet huh? 
Me: Yup. Broth and Odwalla for the win!
P3: Well, at least you must be losing a lot of weight. 
Me: Well I guess some, but I'm actually doing a pretty good job maintaining my weight. 
P3: Well, it wouldn't be so bad to lose a little weight, now would it?
Me: It would if it meant my body was literally eating itself due to malnutrition. 
P3: Oh. 

Subtext: Fatty, you are missing the silver lining in this whole Crohn's business-you could lose a size or two and really REAP THE REWARDS of this disease!

The sad thing is, these are my friends and family. They mean well. They want the best for me. And the people with my best interests at heart are still the ones supplying endless fodder for this blog. 

Excuse me while I go assume the meerkat position in the corner. 

Post #94: Triple D's, and not the fun kind

Too true, Xzibit. Now go pimp my ride POST HASTE. 

All is not well in AAC land.

The new scary medication and the steroids are not getting me where I need to go (i.e., to solid food island. I am currently stuck in "everything makes me nauseous" lake). The new medication needs time to work, of course, but it is worrisome that there haven't been significant signs of improvement since my little jaunt to the ER. I'm exhausted and every day seems like a new opportunity to feel like shit in one way or another. Sigh.

I'm supposed to keep pushing solid foods, but when a small bowl of white rice or a piece of toast has the capacity to ruin my evening with nausea and pain, it's hard not to develop a complex about eating. I usually stick to smoothies and juice and popsicles and soup (with crushed up crackers that become soggy), but everyday I'm supposed to try something bland: rice, toast, eggs. Then I wait and worry and hope for the best (or wake up at 3 am feeling like I'm about to puke). It's daunting and depressing and disheartening. Triple D's, and not the sexy boob kind.

Yesterday during my doctor's appointment I learned that there is a time frame for this daily game of chicken I've been playing with my colon. I'm giving the scary new medication three more weeks and then I'm scheduled for an MRE to check up on the status of my AAC. In the meantime, I also need to bump up my prednisone dosage (fun times!). I halved it, because of what I like to refer to as "coked up hummingbird syndrome" , but apparently the dose I'm on now is not considered therapeutic. Assholes.

If at the end of this time period things have not improved, then there might need to be a medication shift or more drastic intervention, something I don't want to think about right now. You know shit just got real when the nurse calls to check in your "emotional state" after your stressful doctor's visit (also because you called her like 4 times because she forgot to phone in your prednisone prescription, but it was still nice that she was concerned).

I spent all morning watching "yoga for Crohn's" videos on YouTube and thinking of ways I can make myself feel more proactive during this waiting period, but the truth is that I am pretty exhausted (as my doctor said, it's hard to be perky on a diet of broth). I can probably fit in a few side bends and happy baby poses in between napping, going to the grocery store, and playing angry birds, and maybe that will help.

I guess the point to this whole post, if there is one, is that I feel like I'm approaching yet another crossroads, and I am concerned. Ok, I am scared. I am scared and there is nothing I can do but try to eat toast and wait.

Which is a weird position to be in, when there is so much at stake.