Thursday, February 21, 2013

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).

Saturday, February 16, 2013

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. 

Tuesday, February 12, 2013

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.

Thursday, February 7, 2013

Post #93: Slow poke

WHY DOES THE CHAIR NOT RECLINE?!
Yesterday my nurse ordered some blood work, and for some reason I had a strong compulsion to actually go out and get the damn labs drawn. I could have waited until the next day; I wasn't having weird new symptoms; I certainly wasn't in a hurry to get poked (ha); but for some reason, in the back of my tired, spacey, drugged up mind, I thought, "best attend to this now." Fine, sick brain, I'll get right on it.

Even though I was nauseous and a little dizzy, I pulled up my yoga pants and drove to the neighborhood clinic where I usually get my blood drawn. I had a rockin' a capella CD in the car, a full bottle of Gatorade, and the desire to actually accomplish something with my day. I expected to be in and out in 15 minutes. This was only a two-tube visit.

Remember how a few posts ago, I mentioned that a nurse told me my one good vein was developing some scar tissue? Wishing to preserve the functionality of the aforementioned vein, I suggested that the we perhaps try to fill the vials from a new source during this particular visit. Surely, between both arms, hands, legs, whatever, I had another viable option, no?

Actually, no.

I used to have a desperate fear of getting blood drawn, but a few dozen blood lettings have take the edge off that particular phobia. As long as I don't watch it happen or discuss it while it's happening, I'm usually pretty good to go. I'll make small talk as you tighten up that tourniquet; I'll make jokes with you as I pump my fist; I'll even hold the damn cotton ball in place while you root around for a band aid. But unless you want to unpeel me from the floor, that's as close as you'll let me get to the action.

Yesterday, the cheerful nurse scoured my arms, diligently pulling my flesh taut to check for good contenders, poking and prodding beneath my skin with a practiced touch. Vein #1 seemed like a sound choice; a heating pack was deployed to bring it closer to the skin; and: poke!

You can tell when shit is going down incorrectly. Here are some things you do not want to hear during a blood draw:

I think it's in (that's what she said....sorry)
God, your vein is so squirmy! It's squirming all around
I had it a second ago
Hmmm
Yeah, this one's done

When you're about to pass out, there is a clarity of thought that occurs. You would think it would be the opposite; as the blood rushes from your head and extremities, (protect the organs! protect the organs!) it would only make sense for the brain to compensate by thinking pleasant nonsensical thoughts like unicornfluffycloudjustinbeibericecreamcake before you hit the deck. Not so-my brain snapped to attention like an angry, angry drill Sargent:

OK BODY! You are about to pass out! That is why it sounds like you are under water! CAN YOU MAKE IT TO THE BATHROOM!? There is a bathroom 2.5 feet ahead, can you make it? I SAID CAN YOU MAKE IT MAGGOT!? You WILL NOT PASS OUT IN THIS CHAIR do you hear me?? We pass out on floors, not chairs. We have prepared for this. We have trained for this. DROP TO YOUR KNEES SOLIDER!

As I was deciding whether I was going to puke or lose consciousness first, I made the rational decision to do either on the floor instead of the stupid blood letting chair THAT DIDN'T RECLINE. After informing the nurse that I "just didn't feel well right now hold on" about 10 times (not that she was coming after me with another needle or anything), I told her that maybe it would be nice to "just sit down on the floor for a while." She directed me to the nearest wall and told me to lean against it and slide down to the floor (done!). I was sweating profusely and holding on to my Gatorade with a death grip. My wet hands connected with the lab floor. I believe the whole situation could be described as "ick." I was flopped onto the linoleum like a flaccid tuna.

The nurse awkwardly propped my legs up against a cabinet (the space was not designed for this purpose), and with a few sips of Gatorade and some nostril breathing, I calmed down. The whir of the centrifuge was soothing. I consoled myself with the fact that the floor looked pretty clean, all things considered. The nurse hovered, brought in her supervisor who called me honey and told me "it happens all the time," and then another colleague. The whole time, I apologized and told her I have tricky veins and a lot of other people have had problems and it's ok! The three nurses crouched beside me on the floor, and once again felt up my arms, pushing and poking and pulling, six hands trying to find a better vein. Another was selected; I asked to stay on the floor; and supplies were spread out on my lap like a vampire picnic, needle and tubes and alcohol  wipes, oh my!

Again: poke!

Though painful, this one had purchase. I could tell it was in a vein, and I could feel the nurse pushing it farther up and up to make sure it stayed there. I felt her attach a tube, and I breathed a sigh of relief until I realized no one was talking.

Me: Um, is it in?
Nurses: (Silent)
Me: Well, I can feel that it's in. Is it working?
Nurse 2 hands a new tube to Nurse 1: Well, I had a good first flush and now nothing is coming out.
Me: (slightly hysterical): What do you mean nothing is coming out?!
Nurse 1: Well, a few drops. It's just going really slowly.
Me (starting to get nauseous): Do you want me to pump or something? HOW MUCH BLOOD DO YOU REALLY NEED!?

The nurses conference-well, maybe half a tube only for this test, a little more for that one......

I finally call time out-obviously this isn't working. The nurses agree, the needle comes out. Nurse 3 comes forward and assures me she's "really good with hands." I'm still on the floor, and I make an executive decision: I have one more poke left in me. Perhaps it's time to go with the sure thing, the one good vein, scar tissue be damned.

Nurse 1 has given up at this point; Nurse 3 is elected to do the final draw. After combing over both hands, she gives up and readies old faithful.

"I'm a really slow poke!" I look at her with wide eyes. Seriously!? The ringer is a slow poke? AWESOME.

Seeing my raised eyebrow, she laughs. "No, no, it just takes me forever to set up! Ha! I get it, slow poke. A guy last week made fun of me for that too! Don't worry, just a little poke!"

Ol' bluey fills up the two vials like a champ. I want to tell Nurse 1 not to feel bad but I don't want to seem like a jerk. I get my band aid(s) and slowly rise from the floor. They tell me to wait, but I want to go outside where it's cold and away from this little lab alcove. Because I have been seated in a "V" shape for more than 20 minutes (back against the wall, legs up against the cabinet) the entire right side of my body, from ass cheek to foot, is numb. I kind of limp off, and I can feel the nurses staring, but I high tail it out of there and wish everyone a good day, or at least a better day then I am having.

On the way home, I buy myself some soup and some bread. That night I eat toast for the first time in two weeks. I accomplish something after all.

Monday, February 4, 2013

Post #92: 65 Shades of Blahhhhhh

Well, wearing yoga pants.

I am frustrated. 

Eggs kicked my ass today. You know how a good day starts?! Not BY BEING BEATEN BY BREAKFAST FOOD. 

For the past 10 days I have been drinking my meals, which is about as sexy and enjoyable as it sounds. I enjoy a nourishing broth as much as the next girl, but I would like to use my molars again at some point. Teeth for the win!

Unfortunately, since my little adventure, I have come to equate solid food=pain. A few eggs this morning followed by nausea and some warning pangs in my AAC had me ready to stick the "BROTH4LIFE" bumper sticker to my car. I WANT TO EAT SOLIDS FOODS WITHOUT FEELING LIKE I'M GOING TO HURL-is that too much to ask?

It's hard to explain exactly how frustrated I am, how maddeningly, violently frustrating it is to keep having to pause my life to deal with the small (and larger) setbacks of this disease. 

Imagine picking up the newest, hottest bestseller from the bookstore (yes, people still do that). Let's call it "65 Shades of Hey Hey." At first, you're all excited because you feel like you're up-to-date, and with it, and hip. You missed out on the sparkly teenage vampire hullabaloo but now you are ON THE BALL. You can finally make jokes about it to strangers and feel all connected and shit. You will finally understand all of the stupid jokes people are posting about it on Pinterest. You're a few pages in, people are doing weird sexy things to each other, etc. 

Then, surprise! Crohn's. You put a bookmark in. You deal with your colon. 

You keep reading. 

Flogging, so much flogging. 

Surprise! Another bookmark. 

Before you know it, your book is littered with scraps of paper, paper clips, pens, junk mail-random placeholders that are disrupting the narrative of your high-brow lady porn. At this point, everyone has finished the book and you are so far behind (ha, behind) that you don't even bother to finish it. Your mom asks you what the book is about-it has officially crossed the line of cultural relevancy. 

Once again, you are left out. The world goes on without you while you are holed up in your house eating drinking broth and watching NCIS reruns. 

Next week, next month, there will be a new book, a new movie, a new something that you will probably also miss out on, and it will just make you feel even more isolated and alone. 

Also, you can't eat eggs and the steroids you're taking are making you sad and introspective (although, that could just be the natural human response to your situation). 

I'll call my doctor, and check in, but I know the response I'll receive. I'll have to stay on the steroids, stay on the liquids, and keep trying to push the solid foods. I guess they will keep making me nauseous until the one time when they won't, and I'll go from there. 

There is no timeline for this whole process-my colon hasn't been answering the hostage phone I threw down there to negotiate some kind of truce-so I could be looking at another month of eating drinking my calories and living in fear of mashed potatoes, apple sauce, rice, pasta, soft tofu-the scariest foods in all the land. 

And this waiting-for pain, for no pain, for nausea, for no nausea-might just be the most frustrating thing of all.