Post #115: The princess and the (very many) peas

SO MUCH PEA. 

Hello neglected blog! I keep meaning to post, and then getting distracted, and then realizing it's been a month since I last posted. The reason I post at all, and the reason I'm going to try to post more frequently, is that it's helpful to work out what I'm feeling by writing about it-and it's been a long time since I've done that here. Things are a little backed up (cue constipation jokes!). So here goes....

I am now going to tell you a gross story to illustrate some gross realities in my life. 

**TMI warning**, and what not.

I once had a mole removed in the vicinity of my hipbone. It was a standard procedure, with ten little black stitches that look like the fur on a caterpillar's back. I did everything I was supposed to do, but when I went to get the stitches removed.....the wound had not closed. I remember the dermatologist saying, "huh"(add that to list of things you don't want to hear from your doctor). He put a butterfly bandage on, and some sort of sticky glue, and bandaged the whole thing up tightly. I was not to touch it, think about, or even glance in its direction for 72 hours, and then I was supposed to come back.

I'm pretty sure you can guess where this is going. That shit did not want to heal. 

He told me it would close in time, and to keep it dry and clean. I dutifully followed his directions, and it still would not close. It wasn't infected; it wasn't angry; it just wasn't closing. It was on a  part of the body that moves a lot, and even if you stay still most of the time, you're still going to have to get up and pee eventually.

It was during the summer, and I remember laying in the backyard with my pants pulled down on one side, sunning my sad wound in the hopes that the sun would make it shrivel up and close. I felt a malaise-there's no other word to describe it-a deep, unsettling unhappiness that pervaded and discolored everything. I was sick at the thought that I had to go about my daily life with THAT on my body. How could I enjoy the nice weather when THAT was still there? How could I pretend to be happy with THAT laying just beneath the surface of my clothes and a few strategic bandages?

That particular summer, that wound was my pea (see illustration above). Now, just so you don't think I'm being overly dramatic (never!), it wasn't like I had a sword wound on my side. I'm lucky it never got infected; and even though it left a gnarly scar (seriously, it's big), it did eventually close, but I will always remember that feeling-like a sickness of my very being-and how it trumped every other feeling, every other thought. It was like a stain I couldn't wash off. I think that was the first time I was able to articulate and understand how physical problems upset my emotional equilibrium to such an extent.

Side note: you know what finally fixed that problem? THE INTERNET. But that's an entirely different story. 

Now I find myself with a sore in a very Crohn's like place (TMI or not, that's all I'm saying). I'm doing the wound care thing again, and for the first few days I felt that same sickness, that visceral disgust, that soul-dampening weight of a painful, awkward, manifested bodily illness.

It's the pea beneath 100 mattresses, the sharp gravel stuck in your shoe, the mosquito bite that keeps you awake at night: the one niggling imperfection that prevents you from appreciating anything good or happy that is going on around you.

Maybe it's a character defect, but I've always been this way. Even with the Crohn's, there are things that just seem to automatically drag me down into sadness. These things tend to be the more outward/noticeable conditions; they happen, and suddenly I feel totally and completely defeated.

The sore is better; the wound on my hip did eventually close; but when it happens, when these injuries present themselves, I'm like a horse with blinders. In a world full of happiness and joy I plod forward, shoulders sloped, with a singular thought in my head: broken, broken, broken, broken.

And when I'm there, it's hard to see past that revulsion and sickness, to realize they are small (some might say, PEA LIKE) components of a much larger picture. Now, as I've done in the past, I get through it the only way I know how: by plodding forward, miserable and sad, waiting for the day I can venture out and feel normal once again.

This is all a roundabout way of explaining that I recently had some tests that showed things are going pretty well, in AAC land, and could not find an explanation for my current symptoms. To put it another way: the way things are now, the pain and discomfort and symptoms I experience, are my pea. They are still here after (or despite) treatment. They are there, providing me daily reminders that I have an occasionally (although it feels like mostly) dysfunctional digestive system, improved though it may be. 

I can't kick that particular piece of gravel out of my shoe; I can't shake the pea out from under all those mattresses. It is just what remains, and I don't want to live my life being disgusted and sickened and frustrated and held back by something I can't change. 

I've written before about how instead of New Year's resolutions I like to create New Year's mottos. So for 2014, I'm thinking it should be pea related. 

Something like: 

2014: EMBRACE THE PEA (hmmm, too R. Kelly-ish)

or: 2014: MAKE PEACE WITH THE PEA (better)

or: 2014: IT'S JUST A PEA GET OVER YOURSELF (why am I so mean?)

or: 2014: PEAS AND PERSPECTIVE (oooooh)

As with everything else in my life, it seems to be a work in progress. One thing is for certain: the pea is here, and I need to learn how to purposefully incorporate it into my life.

Post #110: All by myselfffff......

But Brad! I thought you.....CARED for my colon!

I think I maybe just broke up with my doctor. 

A few things I know for sure: 

1.) During this appointment, I bypassed the ugly cry and proceeded straight to the bawling, hiccuping, snotty sob-attractive!
2.) I don't feel like having to fight to be heard or understood anymore
3.) I felt stupid and foolish for DARING to have a different opinion
4.) I need a second opinion

I came into the appointment prepared, as always, with a nice little information sheet and list of questions. Things started off as usual, but at a certain point I found myself tuning out the doctor's responses as an angry chorus repeated in my mind: LISTEN TO ME! LISTEN TO ME! WHY ARE YOU NOT LISTENING TO ME?

I told myself I wouldn't be combative, that I would be able to have a polite, dispassionate, constructive discussion of my disease and current symptoms. But guess what? I have no polite, dispassionate, or constructive feelings towards my health at the moment. I wanted to be noticed, and heard, and most importantly, believed. I left feeling pitied, discounted and embarrassed for having been so emotional. 

I wish I could have held my own during that appointment. I wish I could have had a rational conversation with my doctor without the hysterics, because crying in front of medical professionals makes me feel weak. But I wasn't able to, and halfway through the appointment I just gave up. I kind of dumbly nodded my head and said I understood, because I wanted it to be over. I didn't want to fight and argue and push back against anything. 

I don't think I have a bad doctor; in fact, I think I have a really good doctor.....clinically. But as I managed to spit out during the appointment, "I am more than my test results." The sum total of my experience cannot be accurately captured in a relatively clean colonoscopy or unremarkable lab results. I wish he could understand this. 

Finally, he asked if I wanted a second opinion, and I said I thought it was time. 

I could go into more of the specifics of the appointment; how he did, indeed try to blame my symptoms on my IBS instead of my IBD; how he recommended a dietary approach like he invented the fucking diet I'm on; how he invalidated my opinions because they were things I just "knew" and couldn't prove, or because "time of onset doesn't equal causation;" how he said he was sorry, and I believed him. 

It doesn't really matter. I cried all through the appointment, and then all the way home, and then in bed a little under the covers. I felt alone and disappointed and emotional and angry. 

I don't have the energy for this. I don't have the energy to advocate for myself with an entirely new doctor at a different hospital. I don't have the energy to start all over again, and repeat tests and conversations and spit out a list of symptom after symptom. I could stay with this doctor; things didn't end badly enough that there is irreparable damage, but it was certainly a turning point. I could pretend nothing happened and continue on, but we would both know things were different. 

I don't have the energy to push forward, but I also don't have a choice. 

Post #105: Dispatches from the land of wheat

This bread is sad, much like my colon. 

I spent over an hour wandering through the aisles of my local hippie mart, stocking up on bags of eight dollar gluten-free cereal and quinoa porridge, wheat free English muffins the weight of hockey pucks, and more produce than I have consumed in the last six months combined. 

I came prepared with double sided lists; I scrutinized each label for offensive additives, valuing purity of ingredients over taste and texture. I circled round and round the bins of dusty flours, spent far too much time choosing nut milks, and was so overwhelmed by the whole process that I didn't even think to head over to the cosmetics section for an impulse purchase (per usual). Exhausted, I loaded my purchases into the car and drove directly to the nearest pizza place. 

As I was somewhat guiltily eating my margarita pizza (sans cheese), I chose to ignore the shiny new wheat free foods banished to the dark corners of the trunk. As I sit here now, head pounding, body flushing, trying to keep said pizza down, three things are abundantly clear: 

1.) I am more afraid of this new diet experiment than I thought
2.) Emotional eating doesn't go away, no matter what your current relationship with food
3.) In some ways, I am more afraid of things changing (despite the possibility of improvement) than things staying the same

Isn't it interesting that when there is stress involved, the body overrides the mind's innate wariness about food and does a face plant into the nearest source of fat and carbs? In this case, food was both the cause of and (temporary, stupid) solution to the problem. Anxiety about changing my diet led me to eat a food with a high likelihood of making me feel like shit (mission accomplished!), all to avoid thinking about the other new foods I will be eating on Monday, which are healthier and probably less likely to make me ill. It's all very confusing. 

To put it another way: I am worried about eating almond butter when I have spent over a year ingesting/injecting a number of powerful immunosuppresents and other scary drugs with page long lists of potential side effects. 

It makes no sense. I know this. 

I could chalk this all up to nervousness about "rocking the boat," of taking any chance at altering the current, relatively stable (or at least predictable) condition of my bowels. I could say that I was worried about placing all of my hope in another plan, when other plans have failed so miserably. I could admit that I worry about making things worse, or messing up my body somehow, though the latter is unlikely. 

Those things are true, but I think the real reason I'm anxious is that this is the first proactive step I've taken beyond my doctor's guidance in quite some time, and as such is an acknowledgment that I want more, from my medicines, from my diet, from my life, from myself. 

It feels risky to not want to settle anymore. 

Especially when I know that more, in whatever form, might not be possible. 

And so tonight, as I try not to hurl, I am going to remind myself that any relative risk is worth any potential benefit. Just like I have to talk myself into trying a new pill, I will talk myself into this. At the very least, all of the new foods sitting benignly on my dining room table, sequestered from the rest of my pantry, are unlikely to give me nigh sweats, high blood pressure, joint pain, or tremors, and there is some comfort in that. 

Post #102: Great Expectations

Well, seeing as how you're already all gloved up.....

Hey, guess what I just had? My second colonoscopy of the year! Whooo. I seriously should enroll in some sort of "frequent flier" scoping program. Perhaps there is a punch card of some sort? A 10% off coupon for valued customers? A BOGO promotion? 

Everything went smoothly. I didn't talk to my doctor afterwards, but I did talk to the nurse who was in the room the whole time, and she said my AAC looked "ok." I read on the paperwork that he took some biopsies as well, which I knew because I had that delightful "kicked in the gut by a tiny, angry shetland pony" feeling in my gut. 

The day of the procedure was my Crohn's med injection day, and I read online that giving yourself the shot standing up was easier/less painful then doing it sittting down. Ha ha, THANKS A LOT INTERNET. I had a golf ball sized lump that is now a golf ball sized bruise, a constellation of green and yellow and purple dots staining my abdomen. My eye is drawn to it every time I step out of the shower. It looks about as violent as giving myself the shot sometimes feels. 

Sorry if this post feels scattered, but so does my thinking around this. I haven't blogged for a while, and it feels a little awkward. It's not like anything changed, in terms of my AAC; increasingly, I'm just getting sick of talking about it. About the food I can't eat, the weird procedures, the night sweats, and the joint pain (that's a new one)-how I feel like an 80 year old women when I come down the stairs in the morning, gripping the handrail and saying "ow. ow. ow." under my breath as my swollen ankles pop and creak in protest. 

Depending on the results of the colonoscopy, can I say that this medicine is working? Is it worth the side effects? And the most important question of all: 

Is this as good as it gets? 

I'm trying to wrap my head around it. I've spent so much time invested in the idea that I was going to return to a place of normalcy, where I felt healthy again. Where I felt good, and able, and strong. I'm not at that place; sure, I may be a few steps past where I was at my worst, but I didn't think this was the big "tah dah!" stage of this whole process. I'm not a shiny, perfect example of a successful "after;" maybe after a year and some change, I thought I would be. That probably wasn't a reasonable expectation in the first place, but it's what got me through. 

I guess I just don't know what I'm waiting for anymore. This might be as good as it gets. And if it is, how do I stop waiting around and start moving again? How do I progress when I feel like I'm still waiting to be healed? How do I shake the feeling that I should wait around until things are better? That is my inclination, but it maybe be time to reassess. 

All of this is floating in my mind, a perplexing stew of thoughts and hopes and feelings and fear. There's a little determination in the mix, a little hint of impatience. But mostly a dull confusion that makes everything hazy and difficult to discern. 

The recurring theme in this blog, and in my life, is a desire for clarity. I don't think colonoscopy #2, as delightful as it was, will give that to me. 

I just don't know how to wean myself off of expectation. I project my hopes onto every blood test and invasive procedure, looking for medical markers to guide me on my way, to help me make good choices, the right choices. Clear signs that say, definitively, YES! Stay on this medication or NO! Try a new one. 

I end up with a lot of maybes, and at this point, as you can probably tell, I'm just so freaking unsure of which way to turn. 

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 #85: Extreme sexiness ahead

Hahaha, this made me  laugh. And I haven't really been laughing today.

So. I am a year older. It's now been exactly a year since my diagnosis, and to celebrate, I am going to have my innards roto-rooted on Friday. I don't want to write some depressing, introspective review of the last year, because I have been composing that particular essay in my head for the last two weeks. For the most part, the things that stayed the same have been frustrating, the things that have changed have been scary, and a healthy dose of uncertainty has added fun to the mix. Now you're all caught up.

A very funny, wise friend from college wrote on my FB wall "Congratulations on another turn around the sun!" and for some reason, that seems like the perfect attitude to adopt at this time in my life. I usually have some angst around my birthday, as I mentally tabulate all of my successes/failures to date, but this year I wanted to skip the angst and take a nap. Something about having a birthday so close to New Year's creates a  double whammy of existential pondering, but again, I only have so much energy for that kind of mental flogging.

I've postponed having a birthday party, again-when you have an AAC, why bother planning a celebration with food you can't eat, drinks you can't drink, and activities you don't have the energy for? It seems like adding insult to injury. I keep promising myself that when I feel better, I am going to celebrate the hell out of these two birthdays, but I would settle for a smaller affair where I just didn't feel like crap.

Speaking of feeling like crap, I am gearing myself up for the super fun time that is colonoscopy prep (I told you there was extreme sexiness ahead!). This is not my first rodeo, so to speak, but it is my first time using the pill prep (32 pills! yikes). While I'm SO FREAKING GLAD that I don't have to drink a gallon or two of hurl inducing salty lemon lime colon explosion juice, I am always wary of trying something new. My doctor will also be meeting my colon in person for the first time, and I have to say I'm feeling a little awkward about the whole thing. In the past, my colonoscopies were performed by a specialist I didn't really see clinically; I feel like I spend a lot of time with this current doctor, and now all mystery will be removed from our relationship. I know this is a stupid thing to worry about, but when you're constantly sobbing in front of your doctor and discussing sexy topics like malabsorbtion, painful gas, and the quality/quantity of your bowel movements, it's nice to think you have a little dignity left. Then again, if you spend the 18 hours before the procedure having explosive diarrhea like I did last year, you would pretty much let the mailman preform the exam if it meant getting hooked up to some fluids and getting a little sedation. So there's that.

After this procedure, I will have to make some treatment decisions, something I've alluded to in previous posts. I've been delaying it, and delaying it, and it's finally time to nut up (such a gross expression, but it makes me laugh every time) and take a long, hard look at my life and decide if I can tolerate how things are or if I am willing to add more medications to the pile for a shot at better quality of life.

I talked about finding a motto for 2013, and while I didn't settle on one, I've been thinking a lot about something my yoga teacher said a few classes ago. My leg was splayed to the side in some sort of super sexy deep groin stretch. Everyone else in class was groaning, and I felt like I could release my leg all the way to the floor, but I didn't because I was worried that it might hurt and no one else was doing it. My teacher walked over, grabbed my heel and repositioned my leg, stretching me farther than I thought I could go. "How does that feel? Is it ok?" I thought about it, and there was no pain, no stress. "Yeah, actually." As she moved to the next student, she replied, "Good. Never settle for less when you can do more."

That stuck in my mind. When it comes to my Crohn's, am I setting for less, or just settling in general (that last sentence felt very Carrie Bradshaw-esque. Like if she were writing about Crohn's, she would say that, and then go cheat on/with Mr. Big and cry about it over appletinis in between bathroom trips)? I've felt like crap for the last few days-a combination of eating like crap (it was Christmas! and then my birthday! and there were treats EVERYWHERE), sleeping too much, and going off my exercise schedule. My stomach is hard and bloated. I'm in pain, and my AAC is not pleased. I haven't really left the house in two days. Is that what I want the next week, the next month, or the next year to look like?  

I don't have answers to all my questions, and I find myself, yet again, waiting and dwelling in uncertainty. All that aside, I made it through a year with Crohn's. I should focus on that. I made a full lap around the sun, and I have some momentum as I start my next turn.

Post #80: Sweatin' with the oldies

Um, I'm not going to put the NHBPM logo at the top b/c I kind of failed at that. Oops.

Elephant butt!

Hello blog!
 
Here I was at the beginning of the month, all excited to join in the daily blogging fun....and it was fun, until it started to feel like work. Honestly, I don't like thinking about my AAC in such targeted, specific way EVERYDAY. I felt like all of the prompts were getting all up in my business (I mean, I guess that's the point-introspection and what not) and, being the non-confrontational sort that I am, when something gets all up in my business I walk away. Thus, the blog holiday.
 
The prompt for today is about one thing I would like to accomplish in 2013. I have many goals, some health related, some not, but what I'm working on before the end of the year is coming up with 2013's motto. A good friend of mine from college has a tradition of designating a yearly motto instead of writing out resolutions. I heart this idea for many reasons: having a guiding principle instead of super specific goals allows for latitude, and decreases the risk of disappointment and failure. It provides inspiration throughout the year, and it becomes a touchstone of sorts. My motto for the last few years has been the same, and I'm looking for a change.

For the past few weeks, I've been working out at a local community center, taking group fitness classes with descriptors like tone! and sculpt! (JAZZ HANDS!) With the exception of a truly horrifying Zumba class (It was not pretty. I looked like a newborn calf, all spastic movements and flailing limbs. I didn't fall down, but I did kind of want milk afterwards, ha), I've been enjoying myself. The women in these classes-40, 50, 70, 80 years old-bust out some serious moves. They use heavier weights then I do, and out bend the shit out of me in yoga. It's simultaneously humbling and aspirational.

It should surprise no one that I am a back-wall exerciser, the kind of girl who wants to stay away from the mirrors and have a convenient wall to lean on when I get out of breath. The fellow wall leaners have adopted me into their group, and are now pressuring me to take aqua-aerobics. One of them works out in a cashmere sweater, insanely fashionable eyeglasses, inter-locking "C" Chanel stud earrings, and shiny pink lipstick. Today, after some hard core lat work, she plunked down her weights and proclaimed, "Well, just forget it!" and leaned on the wall. All that was missing was a freshly lit cigarette and a dramatic eye roll. I bet she drinks martinis and used to sneak out of 6th period. She's kind of awesome.

The teacher walks around and corrects/harangues people, and after a particularly taxing set of some sort of plank-mountain climber hybrid torture exercise, I was daintily perspiring (hahaha) when I saw her well toned calves out of the corner of my eye (I may have been laying on the floor). Thinking she was going to nudge me with her foot and tell me to get my ass in gear, I huffed, "Just taking a break! Going to start again! Starting right now!" She smiled at me and replied, "Look, you're just starting out and you're doing great. You don't eat an elephant in one bite. Keep it up!" and walked away.

My first thought, as it forced it's way through my frazzled, exhausted mind, was: WTF? Who eats elephants? Next, I had the ridiculous mental image of someone sneaking up on an elephant with a fork in hand and I snorted. Luckily, the wall leaners are an accepting sort, because I must have looked particularly attractive at that moment, passed out beside the stair-stepper and laughing at imaginary jokes in my head. Moving on.

I got through class without vomiting (yeah!) and as I was driving home, I kept turning the phrase over and over in my head. You don't eat an elephant in one bite. Besides being kind of a disgusting prospect, I like the notion of seeing the enormity of the task at hand and just, um, digging in. Starting somewhere. Making progress but knowing there is much work ahead of you. Steeling yourself for a long, slow process of change; accepting that it may be weeks or months before you see the benefits of your hard work.

2012 has been all about damage control and seeking safety. I feel like I've been plodding along without direction, afraid to commit to a plan and risk upsetting what little peace I have attained. It's not that I haven't been doing the work-I'm just working without purpose, and accepting my lack of progress as the price I pay for maintaining the status quo.  I don't know what 2013 will bring, but I do know I need a kickass motto to help me steer towards a different place. This new motto-you don't eat an elephant in one bite-is a contender. Perhaps not PETA approved, but a contender nonetheless.

ps: post 80? whoooooo

Post #66: How do I mail this, exactly?

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

If I got a letter from my colon, I don't think I would open it without gloves. Special delivery indeed!

 

Today's prompt: Write a letter to your health.  

 

Here goes:  

 

Dear AAC,

 

I'm going to keep this short and sweet, because I've already cried enough this week.

 

AAC, you were not the birthday present I was expecting last year.

 

You are not the birthday present I want this year.

 

In a deep secret place, I realize I can't blame my body for expressing a disease. I can be angry-I can fill pages and pages with ugly words of rage and hate, bemoaning this situation-but it's nobodies fault. That might be the most infuriating thing of all.

 

AAC, you are an easy target for my frustrations. But I hope you know that more than anything, I want to heal you. I want to let you do your job. I don't want us to spend another year struggling with the varied miseries of Crohn's.

 

I know there is no quick fix for our situation, but this year I hope we can find more balance. I promise not to flood your system with dairy products or high fiber vegetables. I promise to let you rest when you are tired. I promise to keep buying those moist bathroom wipes you like so much.

 

In return, I ask for patience as I try to find ways to give us both relief.

 

I hope we can figure all of this out, together, so that our greatest problem is when I stupidly eat way too many dark chocolate truffles during a random seasonal potluck because THEY LOOK SO GOOD. Remember the good old days?

 

Wishing you the very best this holiday season,

 

xoxo,

 

-other AAC

Post #55: I do like Matlock....

Sexy retirees with sexy white hair having sexy cocktails on a sexy beach

A few days ago, I was having a conversation with a friend when she remarked, out of nowhere, "You are living the life of a 65 year old. You're like retired."

At first, I was offended. This lasted approximately 30 seconds until I realized that she was basically correct. She wasn't suggesting that I had taken, as it were, early retirement by choice, merely that I was living the life of a person who is typically several decades older.

And it's true-my day is basically my own. I'm not working right now. I have leisurely lunch dates (where I eat safe foods); I do light walking around the neighborhood with an older neighbor; I'm preoccupied with my bowel movements. When people call me, they ask about my health. When I'm out, people are constantly asking me if it's "too much" because I get tired easily. I worry about insurance and flu shots and whooping cough. I take afternoon naps. It sometimes feels like a chunck of my life has been scooped out and I've been deposited into middle age.

Granted, this detour is not something I planned, but it's disconcerting to attend, say, a baby shower and feel that you have more in common with the knitting grandmas than the pregnant lady who is 6 months your junior. I feel very disconnected from my peers. I feel like I haven't earned this life of "leisure." Granted, I'm dealing with a very AAC, blah blah blah, but I feel like I'm watching everyone else build their lives while I'm stuck in medical limbo.

What I am trying to convey (and failing to do so, I think) is that I don't feel like my time now is productive. I'm not accomplishing anything, or building foundations for the future, or even screwing up and having fun. I'm not doing anything. I'm waiting for things to happen to me. I would love to say that with the next new medicine, and there always seems to be a next new medicine, my health problems will be managed and I'll be able to return to my old life. But as I sit here and watch the world go by, I wonder what that new life will look like. My old life doesn't seem like enough. When your world shrinks, and you imagine your future, you want it to stretch and grow and become bigger than it was.

I'm finally following my doctor's orders. Hopefully, this next new drug will get me to a place of more stability. I guess I'm just not so sure anymore about what I want to do when I get there.

Post #54: In good company

Dear diary, today I pooped and ate some pumpkin bread and pooped and felt sick and took a nap and pooped again.
xoxo, AAC

Lately I've been keeping a "symptom diary" again, which makes me feel like an experiment in progress, which I guess I kind of am at this point. There's no accounting of my day-it's strictly a record of symptoms and side effects. This is not a food journal, or a feelings journal-it's a color coded data set. I can scroll through it and notice trends without reading the details. I realized after this latest round of doctor's visits that I needed concrete proof about the goings-on of my AAC so I could answer the myriad questions I am asked with specificity. When you have an, um, active bowel such as mine, the details tend to blur together. Now, however, I can tell you EXACTLY what went on in my colon on, say, September 19th in the afternoon. I was feeling fatigued and bloated, btw.
 
Having the raw data is depressing, but it answers a lot of lingering questions. Yes, I am still having side effects and symptoms. Yes, the nausea from the meds is better.....but No, these current medications aren't really controlling my Crohn's. Yes, I still spend a significant portion of my day feeling sick, tired, and uncomfortable.
 
You can't explain away or minimize your symptoms when you have so carefully and faithfully recorded them each day. They exist, despite any fancy metal acrobatics meant to obscure their existence or deny their impact. Maybe this data is what I need to move along to the next step. I don't always believe my doctors, but I can believe this. It's what happened to me, according to me. Incontrovertible proof.
 
I do have a tendency to minimize things, or deny how much of an effect they are having on my life, and I'll say or think just about anything to avoid making scary or difficult medical decisions, but then-I look at the "diary." I think that's the wrong word, for something so clinical-Bridget Jones keeps a diary. There is no Colin Firth up in this mother (bastards). This is more like covert colon surveillance. Whatever you call it, I can see how little energy I have, and how much time I spend in the bathroom or feeling nauseous or having cramps, and it's something I can't argue with.
 
When the doctor asks me questions, I think I'm answering honestly, but then I go back and take a look at the log (there we go) and realize I'm under reporting my symptoms.  
 
The waiting has been wearing on me lately. I'm waiting for next steps, for side effects to decrease, to taper medication, to take blood tests, for The Talk to come on (there's not a lot going on in AAC land, ok?!). I'm waiting until the last minute to take my meds. I'm waiting to eat in case I have to go somewhere/do something. I'm waiting to take a nap until I have to, because I'm just really tired.
 
Do you know what makes this so much more bearable? Surrogate grandparents leaving sunflowers in a watering can in front of my garage, because they know how much I love them. My neighbor insisting on walking with me a few times a week because it will make me feel better, with the promise that "we can make fun of other people's yards." Friends who call to check on me and drive me to do fun things and let me play with their dogs. Family members who let me break down a little, and still love me the next day.
 
While I wait, I am constantly humbled by these gestures. My diary/log/journal/data set may be bleak, but at least I have some good company during the down times.

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 #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 #26: In my movie, I get to eat DAIRY

Does this exist?! Because it needs to exist.

I had this idea that I would make Friday's a Crohn's free zone, and post on current events or celebrity pregnancy news or the current color of my hair (it's back to brown. yeah!). But I don't get a Crohn's free day, so why should my blog? Screw you blog (just kidding blog, I love you).

Day two of the taper. I had the most normal BM I have had in like three months today. It was so normal, I kind of looked around the bathroom to see if there had been a drive by pooping from a super-regular elf, but no! I even ate out the night before.

I was going to write that memory is flexible, but I don't think that's quite true. I think that we are selective about our memories, sometimes remembering the truth, other times putting together a "best of" reel compiled from snatches of reality to suit our dreams for the future. My montage features me running through a field, with boundless energy, to a restaurant where I order a hamburger and fries and a malted chocolate milkshake. The waitress tells me that all of the bathrooms in a one mile radius are closed for repair, but I shake out my long, luscious hair (it's effortlessly curled, the "beachy" hair that you can't actually get at the beach) and laugh with abandon. It's fine! I'm regular! I CAN HOLD IT.

Anyway. The point is, it's so easy to adjust to a few goods days, and forget the weeks that came before. Before you know it, you're playing your fictitious montage and ordering that milkshake (MISTAKE). It's easy to forget the lessons you JUST learned, and eat a giant bowl of corn pasta with green beans and feel it sitting in a giant ball in your stomach. When you roll that movie, it's really hard to accept reality when it inevitably returns, or when your AAC comes out in full force.

In other news, corn pasta is my new thing-brown rice pasta is always mushy, but corn pasta holds its shape and remains al dente. Also, whereas brown rice pasta has the color (and texture, and taste) of wallpaper paste, corn pasta remains defiantly yellow even if you boil the shit out of it. I was eating pale foods for so long (breadbreadbread) that it's still novel to see and consume vibrant colors.

This was kind of a random, scattered post, but that's where I am-straddling the divide between actual memories and celluloid dreams for the future.