Post #117: I could medal in this kind of running (or at least place)

Different kind of running.....
Confidential to the lady in the grey spandex-you might want to invest in some different pants because I CAN SEE YOUR REPRODUCTIVE ORGANS geeze. 

Hello again blog! Welcome to 2014! Happy New Year to everyone who reads this blog and their colons/various digestive apparatuses. 

I could go in a lot of different directions in this post; how it's my two year diagnosis anniversary; how it's been a full year on my scary injectible medicine; how various colon attacks ruined both Thanksgiving AND my birthday dinner. 

However, this is a blog post about how people don't know shit about Crohn's (see what I did there? eh? eh?). 

This week I volunteered to help cook a meal for an area non-profit, and I ran into a family friend who I hadn't seen in a decade or so. She and her family were a definite fixture of my childhood; her daughter and I got into all kinds of mischief at various holiday dinners, and amused each other while the adults were being boring by sneaking away to the basement and pretending we knew how to play pool (I still don't). 

I was more than happy to see her, and we shared cell phone pics of our family members while dressed in ugly borrowed aprons, surrounded by huge vats of boiling water. Then came the inevitable question: what have you been up to? 

I kind of came to the decision that I would not lie about my current situation with people close to me, and since this woman had known me since birth I didn't feel the need to rattle off the jobs/hobbies/volunteer work I was into two years ago, pre-Crohn's. I told her I had been diagnosed with Crohn's and I wasn't working that much. 

Family friend (FF): Crohn's? What's that? 
Me: Oh, it's a disease of the digestive system. (blank stare) An inflammatory bowel disease? 
FF: Oooooooh ok. So, you get the runs a lot? 

Let's pause. 

OH HOW I HATE THAT PHRASE. Having "the runs" sounds kind of comical; I picture a comedian with their knees fixed together, kind of crab walking heroically toward the bathroom. Subtext: they probably won't make it, and that's funny! It's funny to lose control of your bodily functions in public! There is a cinematic tradition of using poop as a comedy prop, whether someone gets turned upside down in a port-o-potty (see: Jackass, the movie), clogs the toilet of a potential date (see: Along Came Polly, a thousand others), or just completely loses control of their bowels all together (see: Bridesmaids). In the last two examples, the characters have "the runs" due to food poisoning. They're sick, but it's still funny when they humiliate themselves. I guess I never appreciated that distinction before I got to deal with an AAC on a full time basis; I certainly laughed along with everyone else in the movie theater, but now it seems like kind of a cheap laugh, and one that hits a littttttle to close to home. 

Beyond any comedic connotations, "the runs" is just a coarse phrase. It's one of those cases where the word that describes the act is equally as disgusting or off-putting. Maybe it's because I use the word so much (to my friends, family, physicians, mailman....) but the word diarrhea doesn't gross me out the way "the runs" or (even worse!) "the squirts" do. At least "diarrhea" is somewhat respectable, and compared to the other terms, it's downright dignified. And when it comes down to it, I think that's what pisses me off the most: giving what to me (and a lot of other people) is a painful, unpleasant, occasionally debilitating condition a nickname is not respectful. It makes light of a situation that may be funny in the movies, but isn't funny in my real life. 

Back to the conversation: 

Me: Yeah sometimes. That's a part of it. 
FF: Well, that's too bad. 
Me (not really wanting to continue the conversation): Yup. 

Argh. Part of me wanted to justify just how much more Crohn's is than just a bout of diarrhea now and then: but wait! Don't you want to hear about the daytime pain? The night time pain? The endless doctor's appointments? The invasive tests? The dehydration? The malnutrition? The side effects from the meds? The sore joints? The night sweats? The hair loss!? I CAN TELL YOU ALL THE WAYS THIS DISEASE SUCKS!

But it wasn't the time or place, and I'm not the official ambassador for IBD. It's just frustrating to have someone reduce your experience to a piece of slang that doesn't begin to encompass the day to day struggles of Crohn's. Today, for instance, I ate peas for the first time in like 6 months and worried about that and had a lot of bowel movements and now I have a pain in my right side and I'm tired. And this was a good day! I ate out at a restaurant and ran errands and went shopping, all while keeping in mind where the nearest bathroom might be located. 

The last time I ate out and went shopping, a week ago, I was in the middle of Crate and Barrel when I felt that special feeling (cold sweat, cramps, pain) and knew I had about 2.5 minutes to make it to a bathroom or poop on the showroom floor. I did indeed have "the runs" and I did have to actually run to a bathroom and no, it wasn't funny, even a little bit. 

I know there is no succinct way to express this reality to people. I get it. 

If nothing else, what I take from this conversation is the desire to be more open and receptive when other people try to tell me things about their lives. To not assume I know all the answers, and to try not to belittle or reduce their experiences in any way. I'll try not to be as ass about whatever they disclose, and I'll let them tell me what it's like. 

Which I would have done with this family friend, if I thought she really wanted to know. 

Post #114: In the business

Welcome to my office. 

Yesterday some good friends who live out of town came to visit. Sometimes, with old friends, I'll get portals into what my life was like pre-AAC-little windows into who I was and how I was before my life was overtaken by Crohn's. That last part sounds melodramatic, and it is, but it's also pretty accurate. 

My friends let themselves into my house and kicked off their shoes, raiding the fridge before grabbing my blanket and making themselves comfortable next to me on the couch. My cupboards are a showcase of beige gluten free simulations of real food, but I managed to find some ancient girl scout cookies in the freezer, which seemed to suffice and prevented me from feeling like a total failure in the hostess department. 

As we sat around and caught up, a weight fell from my shoulders, and for one brief moment I got a glimpse into what I had before, and what I'm missing now. Easy camaraderie with people who knew me before my AAC came out in full force, and know that I'm not really "like this." People who knew me from a time when I was more social and adventurous and funnier and happier. I was never much of a risk taker, never the life of the party-but I was not what I am now. I feel like I need to be reminded of that, by seeing that old version of myself reflected in the memories of some of the people I know best. It's a kind of gift, to have that easy report, with people who know that I am more than my symptoms and disease and don't treat me differently than they did a decade ago. 

I was catching them up on my latest weird medical testing, and one of my friends, who works in a doctor's office, started discussing a bunch of diagnostic procedures. She was unsure of the difference between two procedures (that I've had), and as I was explaining the differences she laughed and said, "I knew you'd know! You are in the business, after all."

That one little comment, offered without malice or judgement, jolted me out of the portal and yanked me back to reality. 

I realized that my AAC, my illness, was now an established part of our shared timeline. It was, in their minds, what I do now. It was my business, my specialty, my vocation. And they're right. 

I'm in the business because I spend so much time around doctors and nurses, and undergo lots of testing, and allow so much of my daily thought process be devoted to thinking about (ok, obsessing over) my disease. I used to have a different business, a teaching job, but not anymore. I'm in the business because I try to be an educated patient and make the best health decisions for myself, even though I feel like I fail a lot of the time, on both fronts. 

I'm in the business because I don't have a choice. 

My friends still love me, and accept me, new business and all. Still, I don't want this to be my job. 

I'm coming up to my two year diagnosis date, and this whole time, through all of the testing and treatments and medications and special diets and new plans and failed plans, I've been waiting to feel better. I've started to, a dozen times, but it never seems to stick. So I've stopped making plans or trying to structure my life in any way that involves responsibility, because the only thing worse then letting other people down is hating yourself for it. 

But sometimes, it hits you in the face, how other people see you. You see through the portal-how you were-and you miss parts of your old life. You see your present, and there's a lot you'd like to change. And since you can't see the future, you put a smile back on your face and eat a girl scout cookie (mistake!) and reminisce, hoping hoping hoping that at some point your AAC stops being your only business. 

Post # 49.1: Hangin' tough

I'm trying to hang in there hamster STOP YELLING AT ME.
 

I'm almost at post 50, which seems momentous. Since I want post 50 to be about something happy, this post will be 49.1.

So. Time for some truth (because all the stuff I write about explosive diarrhea is just a bunch of lies so you'll think I'm glamorous and cool).

I am supposed to start work in a month. I don't know if I can do it. And realistically, I'm not sure that teaching, as a profession, is going to be conducive to my life with Crohn's.

Today was a bad day, in all respects. I started taking my new medicine, so I don't feel so great (although no vomiting so far, yeah!), I had a bunch of super un-fun colon explosions, I slept for most of the day, and then I ate some white bread and considered my future job prospects. All in all, not very encouraging.

It's hard for me to remember sometimes that I've been living with this diagnosis for less than a year. I think that even though I obviously had symptoms before then, having the diagnosis-having a name-for what was wrong with me changed everything in a very profound way. I feel like I'm scrambling to undo 30 years worth of planning and expectations since I've been given this new piece of the puzzle. I might have planned things differently if I'd known, but it's hard to say.

In one month, I am supposed to be at the head of a classroom, delivering curriculum I've developed and lessons I've planned (which I haven't done yet). I will need to learn student's names, and develop relationships with them, and correct their papers. One of the things I usually like about teaching is that I can be energetic and playful and creative. I can engage my students with random activities, play games in class, hand out candy on random Tuesdays to make the day a little better. I'm loud and I move around a lot, and  I make jokes, and I don't care if I embarrass myself as long as students are learning and having fun in my classroom.

I don't have enough energy to do that now. It's conserved for things like showering, or sometimes going to the grocery store. If, in a month, I am able to teach, it would not be the same as before. I think I would be more self contained and dependant on the course textbooks. I think there would be less YouTube movies clips and more silent writing.

I think that getting to work everyday and making it through a lesson would be a "win," if you will, but still a battle I would have to fight every.single.day. I don't know if I'm physically or emotionally prepared (or able) to fight that fight.

I'm thinking of emailing my boss and telling her I am unable to teach this quarter, again.

Crap.

On the other hand, I've been trying to get back to where I was before the diagnosis: working in a profession/place that is not necessarily suited to me now. I'm not saying that people with Crohn's shouldn't be teachers; I'm saying that maybe I'm a teacher with Crohn's who should look for new ways to do the things she likes without the burden of a daily course load.

I have to make the decision soon, and every answer seems wrong, or at least stressful/uncomfortable. It's hard to see what I can't help feeling is a failure as an opportunity to grow or change my life for the better.

Post #45: Whales are gross

Do you see your favorite foods in this picture? Neither do I!

Fun things that happened this weekend:

1.) Played with kittens (eee!). One was a farter, and I felt immediate kinship and considered adopting a flatulent cat

2.) Had to have a colon explosion while company was in the next room, and couldn't make it to the upstairs bathroom; did the whole "if I turn on the water, NO ONE CAN HEAR A SOUND" trick and hoped they thought the percussive gas sounds were merely an errant motorboat passing by outside

3.) Watched Liza Minelli bake a chocolate cake with Paula Deen. So very, very wrong, and yet so compulsively watchable. On a side note, I would totally not be surprised if a hidden camera caught Paula Deen in a warehouse somewhere, breaking kneecaps with a lead pipe and screaming in a Brooklyn accent

4.) Watched the Olympic closing ceremony. The Queen totally should have been there! Harry looked petrified, I bet she beat him with her purse first so he'd behave

Yeah, that about covers it. It was an uneventful weekend, except in my colon, where the Olympic event was sprinting (to the bathroom). For serious, I cannot remember the last time my stomach cramps were THAT LOUD-I would say it sounded like whale song, but whale song is not usually angry-sounding and followed by copious amounts of diarrhea (or maybe it is, whales could be gross like that).

I finally made a decision about the scary medication, and now I'm in a holding pattern waiting for this cold to clear my system, but without blood work/taking antibiotics it's hard to gauge whether or not it's really gone. I also haven't taken the steroids. I know they would make me feel better now, but in the back of my mind I keep thinking about going back to work, and I want to have a secret weapon if I need it. I know if I start the steroids now, there is every chance I'd still be on them at the end of September, but I just want to have some extra ammunition, just in case. It's kind of the only advance planning I can do with my AAC. Secret weapon, ammunition-these steroids are like the Navy Seals of pharmaceuticals, slipping quietly into my colon and knocking my inflammation into SUBMISSION. Boo rah!

So as per the instruction of my gastro's nurse, I am trying to "rest" my colon until I can start the new meds, thus the graphic above. It's old school, sure, but my ass is not going to eat spelt bread and high fiber food in the midst of all of these colon explosions. If my colon needs to take a time out and chill with some white rice, guess what's for dinner?? It's kind of weird to be consuming the "forbidden foods" all day long (white bread, Gatorade, white rice, oh my!) but it seems to be helping my cramps. We'll see.

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

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

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


I really wanted to go to that appointment.


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


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


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


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


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

Post #37

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

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


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


I have Crohn's.


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


I am scared.


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


I have Crohn's, and I am scared.


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


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


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


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

Post #29: In which I say "predictability" a dozen times

Must use this card before it become culturally irrelevant in 3....2....1.....

Two things to note:

1.) The girl looks way too happy about her spasming bowels, but maybe she's jigging all the way to the chamber pot?
2.) That spicy fish stew at the restaurant? That had no dairy? That I thought I would take a chance on? NOT SUCH A GOOD IDEA.

I was out to lunch today (see note above) when a friend asked me what I wanted, in terms of my health.

Here's what I said:

Consistency, regularity, predictability.

It goes without saying that these things would go hand in hand with some symptom relief (nausea, diarrhea, cramping, fatigue, and pain). After hearing those qualities, which sound like a bank advertisement or a really bad dating profile, my friend said, "well, does anyone really have those things?" It's true that the human body is not a machine, like a toaster, that comes off the assembly line all tuned up to factory specifications. You can't necessarily depend on your body to toast a piece of bread the same way day after day (or have normal bowel movements every morning, whatever). But I think that a lot of people, at least those who don't have chronic illnesses or active illness (a cold, pneumonia, jock itch), wake up without thinking about how their body will function over the course of the day. It's assumed that it just will.

When I wake up, I don't always know if I'm having a bad day or not. I can wake up feeling fine, and three hours later be back in bed with some RLQ pain (that's right lower quadrant, people). I can wake up feeling queasy, and then steadily improve, and then feel queasy again. I can have a colon explosion in the morning, take a nap, and feel fine for the rest of the day.

For instance, last night I was supremely nauseous. This morning, same thing. I dragged my ass out of the house, refusing to miss my lunch date and planning on ordering a sprite for lunch, but I ended up feeling better by the time I got there. I ate lunch, felt fine, came home, spent some quality time in the bathroom, took a two (ok fine THREE) hour nap. Nauseous, then hungry later, now having some RLQ discomfort. So, was this a good day? A bad day? It was kind of both. Now try planning a life around this kind of inconsistency, irregularity, and unpredictability. Try holding down a job that requires you to have the very qualities you want for your colon; a job where you interact with people, talk in front of people, and need to be focused, present, and aware. That is what I'm signed up for in September.

Whenever I get pissy and frustrated with all of the things that aren't working (well, they're working, just in an UNPREDICTABLE way), I try to remember what my nice naturopath once told me. Lest you think I'm completely prejudiced against the profession, for the last few years I've been seeing not one, but TWO highly intelligent and compassionate naturopaths (the first one narrowed her practice to treat patients with a specific disease and do research around that disease, so I went to her colleague. No drama involved, that all came later with the asshole naturopath).

I came into my nice naturopath's office one day, super overwhelmed and frustrated by a lot of abnormal lab tests and scary new symptoms (this was pre-diagnosis), and I started to cry. I was feeling broken and sick. He handed me a tissue, looked me in the eye, and said, "If you made it to my office, 98% of your systems are working. You can sleep and eat and think and drive. It's the other 2% we need to work on."

Maybe the percentages have changed a bit, but I try to remember this when I'm feeling especially sorry for myself. There is a lot going right. There isn't a lot of predictability in that 2%, but it's not the whole picture (even though it feels like it is). And it's something to continue to work on.

Post #14: Colon Firth

Someone nicknamed their AAC "Colon Firth." I am ridiculously jealous that I didn't think of this first.

I was just re-reading my post from yesterday, and......sorry, got distracted for a moment by the dreaminess that is COLON/COLIN FIRTH. gah.

Anyhoo, I was thinking about it, and I realized one of the things that sucks about waiting: the utter passivity of sitting around, or putting plans on hold, while you wait for someone (the doctors!) or something (my AAC!) to make important decisions about your life. This passivity sucks for several reasons, which I shall now list:

1.) I try not to be passive. It makes me feel like I don't have options/a voice.
2.) There is no endpoint for all of this waiting. There is not a clear timeline for action of any kind.
3.) Eventually, being passive about this makes me more passive about other things in my life.
4.) Human beings are adaptable, and this passivity feels normal. I'm in kind of a holding pattern here, and I've become used to it. I don't think I'm as concerned or angry or aware of things as I should be.

I just got my work schedule for the fall, and while it sounds manageable in my head I'm completely freaked out about making a commitment of any kind because I just don't know what my situation will be like in three or four months. I don't know if I'll be able to teach morning classes. I'm scared of getting sick there, of getting overwhelmed, of causing or having to work through a flare.

During the whole diagnosis process earlier this year, as my symptoms were getting worse, I basically held my work life together with Luna bars, lemonade Gatorade, and denial. I was slogging through three hour classes where I often felt dizzy or sick. I didn't have the energy to deal with my students. I couldn't remember details, and my mind didn't feel sharp. Eventually, after many sick days, I was at work and almost passed out in a computer lab. That weekend, after a visit to urgent care and three liters of fluid, I still felt sick, and I knew it was time to take a leave of absence. Everything just caught up with me at once. It was a crappy decision to make, but I had to do it. I don't want to put myself in the same situation again, even though I have more information now and some new medicines to throw at my AAC if things get out of control.

But what I'm realizing is that I am going to have to be the one to make decisions about what happens next, and I feel like I'm throwing darts at a dartboard. I don't have a crystal ball up my ass that can tell me what comes next. Which would be awesome.

In other news, even before I got my schedule, I was apparently more stressed out than I thought. My stress level has a direct correlation to the thinness of my brows, and last night I plucked those mothers into a fine, fine line. It's not a cute look. With my glasses, I think I look owlishly surprised all the time. I am calling a moratorium on plucking for a good two weeks, b/c at this point I may as well just shave them off and draw two wonky lines that aren't level BECAUSE THAT IS WHAT IT KIND OF LOOKS LIKE ANYWAY. The right eyebrow is higher....it's a thing. Luckily, there is a Clinique bonus going on, and besides being a bonus whore I now have a sudden need for emergency eyebrow resuscitation products. Silver lining!

Post #13: Playing the waiting game

If you want a clean colon, you could buy this hot sauce. Or, you know, get Crohn's.

Day whatever of the taper. Day whatever of "cutting out white stuff."

I realized today just how much of my life I spend waiting. First, I waited years to get this diagnosis, all the while worrying that something more serious than IBS was going on (and I was right! whoo hoo!). When I was nauseous all of the time, I would wait for it to pass so I could go to class or go out with friends. Sometimes it would, and sometimes it wouldn't. I wait to have bowel movements, I wait to pass gas. I wait to see how different medicines (so many medicines over the years-I have a prescription pill graveyard in my bathroom) react with my body, I wait for bad side effects to wear off, I wait for test results, I wait for doctor's appointments. I wait in waiting rooms, I wait to get my blood drawn, I wait in line at the pharmacy. When my feet cramp up from dehydration, I wiggle them and wait for my toes to straighten out. I wait for my bowel to empty before I go about my day. When it feels like my bowels are twisting themselves in knots, I wait for the pain to pass.

I wait until the last minute to cancel plans, because I hope I will feel better. I wait for my friends to call me, because I don't really want to call them. I always seem to have the same news to share. When I go out to a restaurant, I nervously wait for the waitress to take my order, because I know that I'm going to be "that girl" who asks for everything plain and on the side. I wait for things to get worse, or get better. I wait for the day when I don't have to think so much about food. I wait for the day when I don't need medication, although I'm not sure that day will ever come. I wait for a time when it doesn't matter if I'm near a bathroom.

When I tell people I have Crohn's, I wait for their reaction. Later, I wait for my reaction. I wait for my emotions to boil over or harden into cool, familiar anger.

Someone today asked me if I was bored, being home all day, and I said yes, but I think I'm really sick of waiting all of the fucking time. I used to feel, when I first started feeling sick, that I was "waiting for the other shoe to drop." I was waiting to hear the bad news. I've heard it now, and it doesn't bring relief, this knowing. I feel like there are now a thousand other shoes waiting to drop.

All of this, the tapering, the diet, the supplements (which I am still waiting to take-my specialty....) is a ploy to buy me some time to make my next treatment decision. I know that. I decided that I would let my symptoms dictate the next course of action, thereby taking the decision away from me. And now, everyday, I have to ask myself, was this day bad enough? Is it time?

I'm still waiting for an answer.

Post the third! (has nothing to do with cows)

Haha, cow butt. Thanks google!

Do you know what's hard to have when your head is permanently shoved up your ass, worrying about.......your ass? PERSPECTIVE. Today was a day of little reminders that I am lucky, in so many ways, in terms of my health. First, I have a support system. I came home to a message from someone just "checking in" to make sure I was still kicking. It was low key, just "call if you need anything," but it was very comforting. I have people.

Second, I have health insurance. Granted, my entire tax refund check is going to fund a colonoscopy that I had 4 months ago, but I'm still paying about 1/4 of the total amount. The steroids that I'm on right now? According to the printout from the pharmacy, they cost over a thousand dollars. PER MONTH. I have a ten dollar co-pay. Every time I pick up a new med, I think, how do people without jobs or insurance or savings pay for this? Thank you, insurance. If everyone were "forced" to buy you, more people would have access to the aforementioned expensive drugs! But that's another post:)

I was at B&N and ran into a co-worker in the parking lot. She was holding the tiny, chubby hands of her toddler high above his head as he lurched towards the store, taking giant unsteady steps. I stopped to say hello, and she introduced me to her parents; her father didn't have the use of his right hand, and while I aborted my handshake into an awkward wave he was fixated on his grandson's progress, his face both sad and proud. At the grocery store, a woman with a limp navigated around the bread shelves in the deli, pushing forward to get a free sample, and then another. An elderly man took excruciatingly slow steps to the exit, and as I darted around him to hurry to my car I saw his wife waiting on the corner, holding out her hand. He helped her to their car. He was the steady one.

People went about their lives with their imperfect bodies.

I am often annoyed that people cannot see my illness, and so in a way it doesn't exist for them. When I meet up with a friend, I hear, "You look great! You're lost weight!" and while that's nice to hear (I guess?) it seems to me the unspoken thought that accompanies that statement is "so you can't possibly be that sick!" Yes, I'm overly sensitive. Yes, it's easier to nitpick the trivial comments of others and deflect my anger onto the people and words that really have nothing to do with my condition. Yes, the steroids make me (more) emotional. But sometimes I just want to wear a t-shirt that says, "I spent the morning on the toilet and I'm tired and I feel like someone sucked all of the energy from my body with a giant straw so could you please cut me some slack?"

And then comes a day like today, where I see people all around me living their lives and interacting with people without the aid of a non-catchy semi-horrifying t-shirt. I guess I do the same, and in some ways I blend in as "normal" even if I feel anything but. It's a kind of invisibility that can be lonely. But for now, for today, I am going to try to focus on the lucky part, and to wedge my head out of my AAC.