Adventures in Crohn's Land: Part 924

Guess what I had yesterday......

A small sampling of exchanges from yesterday's colonoscopy, presented without comment:

Trying to explain the art of anesthetization: 

Anesthesiologist: It's like tequila. After a few shots, you're pretty comfortable and happy, but after 10 shots we could amputate a limb.
Me: That's kind of a grim example.
Anesthesiologist, looking shifty: That's how we used to do it in the old days. (he was maybe 5 years older than I am).

Two anesthesiology nurses were wheeling me to the procedure room-they went down the wrong hallway first, so I naturally did a pageant wave to the random people in the offices there. When they wheeled me into the right room I was facing the wrong way, and they had to spin me 90 degrees, which is difficult when the room is filled with large equipment and monitors and wires. Another nurse was helping them. 

Nurse #1: Wheee! It's like a ride at Disneyland!
Me: With better drugs!
Nurse #2, under his breath: Probably cheaper, too.

One of the anesthesiology nurses was wearing a pair of clear goggles pushed up her head. 

Me, noticing: Um, I can't help but notice you are prepared with goggles. WHAT DO YOU THINK IS GOING TO HAPPEN IN THERE??
Nurse: Oh! I always wear these! Nothing to worry about!
Me: Squinting, unconvinced.
Nurse: You're funny.

Consolation prizes

 

waterwaterwaterwarter every day I'm hydrating

 

I've had a pretty rough few weeks. More specifically, a spectacularly awful week followed by a few weeks with patchy awfulness. I'm not sure if my medication isn't working anymore, or what's going on-and the only way to find out is to strap on a miner's helmet and travel deep into the recesses of my angry, angry colon. I thought I could get through 2015 without a colonoscopy, but the JOKE'S ON ME.

 

At the end of the awful week, I had a doctor's appointment, and my doctor wasn't impressed when I mentioned that I had broken my non-colonoscopy prep record for number of bowel movements in a day. That was not a good day, although I think I managed to watch at least 1/2 a season of OITNB in between bathroom sprints. During the appointment, I was crying nonstop, not in an emotional way, more as a weird side effect of being dehydrated. I don't know if this is a thing in general, but when I'm really dehydrated, my eyes kind of leak (ironic, no?). It must look really weird, to not having a crying face, or a crying voice, but just randomly crying eyes-I think my doctor was kind of wigged out. We talked about different treatment options, and at the end, I informed him that he needed to hydrate me. I believe my exact words were, "either you do it or I will find someone who will," which was kind of an empty threat because there aren't really neighborhood hydration pushers, although if there were I would totally hit that.

 

Maybe it was the calm, creepy crying, or just my general air of resignation, but he agreed. I totally got pity hydrated, and I will take that all day every day. That is one of the things I like about my doctor-I think he genuinely feels badly when things aren't going well for me. I also think he wanted to give me something, or do something, to make me feel better. Which it did.

 

You know what's fun? Trying to stick really small veins when a person's dehydrated. The office wasn't really set up for IVs, and so there was some general scrambling for an IV pole and supplies. The nurse who came in seemed vaguely concerned about the whole thing, which is never a good sign. She talked incessantly about the process of inserting an IV, and poured over my arms and hands looking for a good candidate: "don't mind me, I'm just going shopping!" Here's another fun fact: though I am in fact built like a cart horse, my veins are Shetland pony small.

 

Now here's where I get a little judgmental: as she was running her hands across own, I noticed she had a small tremor. I'm hard to stick in the best of circumstances, but I was tired, dehydrated, and praying the immodium would hold, and all I could think was fuckmefuckmefuckme. I showed her my one reliable vein, turned my head, and braced for the worst. She narrated the whole process, and I mean the whole process: "Ok, a little poke. I think I'm in, hold on, let me feel.....so far so good.....let me just check.....I'm going to push it in a little farther....wait.....I think I went through....yeah I can't get it in...." and on and on and on. When it was obvious that one didn't take, she went through the whole process again, looking over my arms (front and back), hands, elbows.....and then she tried again.

 

This one hurt worse than that last one-I've never had someone really shove a needle into a vein that forcefully (excuse me while I pass out even writing this). She kept up the narration this time, push, talk, push harder, until I finally told her, it's ok if you don't tell me what's going on! Which she ignored, and finally she gave up on that vein as well.

 

At this point, I was debating how badly I wanted the hydration. Like a lot of choices involved with this disease, it was a case of, do I want to feel crappy now, or feel crappy with additional crap in hopes that I might feel better in the future? Thankfully, the awesome PA had been observing this whole procedure and finally stepped in to bring in the ringer. Every medical facility has one-the chosen one, the vein whisperer. This PA wears funky glasses and calls everyone honey and sweetheart and gets away with it. She expertly managed the situation, calling in the ringer and gracefully excusing the current nurse without ruffling any feathers. The nurse seemed relieved to be let off the hook, and praised me for being a really excellent patient (by passively laying back and not moving? gold star!).

 

The ringer stepped in, and I could tell from the moment she stepped into the exam room that she was a bad ass. She was from another department, but you could tell she was used to this situation, even relished it. She had spiky silver hair and ice blue eyes, and moved with quiet confidence and grace. I told her that she was welcome to try any vein she wanted, but I wanted some lidocaine first-and that's when she pulled out two tiny syringes full of that shizz, with a gleam in her eye. I almost proposed to her on the spot. She selected a vein, and when I told her the previous nurse dismissed it as a poor candidate, she looked me straight in the eye and said, "well, she's not me" in a gravelly voice.

 

I'm not really attracted to the lady folk, and this could have been the dehydration talking, but I kind of wanted to make out with her a little at that point. Now, do you think she got it in? She fucking got it in, of course she did. It did take quite a while, as she went at a glacial pace, and apparently got blood all over the floor and my arm. But she left with a big smile on her face and put a big one on mine. Rowr.

 

When I get rehydrated, there's a point where I can feel everything unclenching, relaxing. My headache disappears, I feel calmer. Sometimes a girl just needs a little pity hydration to perk her up.

 

I'll have the colonoscopy next month, and I hope Gatorade and good old H2O can control everything until then, but if not-I know just who to call.



Nothing to crow about

DRAMATIC DATELINE STYLE REENACTMENT

There's a big magnolia tree outside my window, with a robin's nest nestled in the crook of one of the larger branches. It was empty last year, but a few days ago I woke up to the whoosh whoosh whoosh of bird wings. A mama bird was flying around the yard collecting moss and hopping around the outside of the nest, plugging holes and freshening up the mud and twigs for the arrival of the next generation.

This pleased me, as I saw it as a generally hopeful sign of spring, a time of new beginnings and possibilities and other Hallmark whatnot.

This morning, I heard the mother robin going batshit insane, pacing along the gutters of the roof opposite her nest, screaming towards it. Putting on my glasses, I saw a fat black crow hovered over the nest, shards of baby blue egg and yolk stuck to its gaping maw of a beak. He (not sure why I thought of it as an asshole male bird) looked, if you'll excuse my anthorpomorphization (I know that's not spelled right, DEAL WITH IT) of the animal, pleased with himself, his large glossy body looking especially menacing in comparison to the small nest he was pillaging. To add insult to injury, he took his time with his breakfast, lingering long after the last egg was consumed, the mama bird increasingly, and impotently, furious.

It was a dispiriting way to start the day (more so for the mother robin, I imagine). The mother bird hasn't returned, and the once tidy nest is in disarray, as though tossed in a burglary. I keep the blinds closed so I don't have to look at it.

I'm not going to try to draw some deep and meaningful connection between this little vignette and the current state of my health, both because that is some serious Freshman Lit 101 shit and also because I'm too tired to attempt that manner of pop-psychology gymnastics. But things are not good right now, and it's hard to remain even-keeled and dry-eyed about the whole thing.

Today was one of those days where I wish I had a giant dog bed I could park between the toilet and the tub, so that I could curl up and doze between bouts of angry colonic activity. It was one of those days when I had to practice, in my head, the polite excuses I could use if the furnace repairman tried to ask me a question or hand me a bill when I was about to run to the bathroom.

"If you'll just hold on a minute, I have to run upstairs."
"I have the stomach flu, so if you could just leave the bill on the table that would be great."
"I left my checkbook upstairs, hold on while I grab it!" (10 minute interval and several toilet flushes follow. smooth!)
"Hold on, I'm expecting an important phone call from my doctor's office, I'll be right with you!"

And on and on and on. Luckily he kept himself occupied during the most active part of the morning, far away from the bathrooms.

I am so tired. I'm tired of having to think of excuses for my AAC, of canceling plans, or of actually forcing myself to follow through with plans and meet ups and feeling sick the whole time, or worried about getting stuck in traffic with what my foreign neighbor would call "a dodgy tummy."

I'm tired of waking up with what I call the goat sweats, wherein I'm pulled from sound slumber by a general feeling of dampness and then get a whiff of myself smelling, you guessed it, like a goat who's just gone to Zumba class.

I'm tired of forcing fluids when the last thing I want to do is drink anything because I'm so nauseous, when even the weight of water in my stomach feels like too much.

I'm tired of eating foods that are white, whitish, beige, brown, or taupe. Noodles, toast, plain applesauce, rice. I'm tired of simple foods like hummus tasting like a vacation for my tongue, when there is a great wide world of delicious food that I could be eating.

I'm tired of being tired, to an extent where putting together sentences and remembering specific words feels like work.

I'm so tired, in fact, that I actually called my doctor's office and requested steroids, which I hate, because I want to feel better.

I picked them up today. I'll start them tomorrow. I'm too tired to think about the side effects, or getting work done, or putting away my laundry, or doing anything beyond travelling between my bed and the kitchen and the bathroom and couch.

Tomorrow, I'll take the pills with a swig of Gatorade, hoping for an energy assist from the quick jolt of glucose to my system. I'll eat my toast and hope for better things, Hallmark sentiments and all.


It's all I can do.

Well, Hello Sailor!

So I says to Mabel, I says.....

 

 

So in case anyone still reads this blog, you might have noticed I took a tiny break, just a few days off to relax, kick back, eat some Milano's, watch a little Lifetime....oh right. I TOOK OFF A FUCKING YEAR. I avoided this blog for a year, and now I'm back and swear-ier than ever!

 

Sorry about that.

 

The absence, and to a lesser degree, the swearing.

 

Things were good, things were bad. I was happy, I was sad. I met a cad, his name was Vlad. I could go on like this for days (don't be mad).

 

As is so often the case with my colon, I had good months and less good months; during the good months, I promptly forgot about the previous months and went about the daily business of living, and when things got worse I would actually be a little surprised, as though I hadn't experienced the exact same delightfully life-inhibiting symptoms 4 or 6 or 8 weeks before.

 

I'm sure this is some complex coping mechanism, or simply self-sanctioned colonic amnesia. Either way, each time things take a turn for the worse, it's like a little betrayal, instead of something that I should definitely be expecting four years (!!!!) after my diagnosis.

 

After failing two different blood tests AND a super fun stool test (and by failing, I mean overachieving in the inflammatory markers department), I'm going to change my meds around this week in hopes of turning down the drama in my AAC. I would say "with the goal of re-inducing remission," but remission is a word that I'm not really comfortable using with my Crohn's. Remission seems to indicate a cessation of symptoms, a return to normalcy, a complete reversal of disease. I know that's a very black and white way of looking at it, but since I was diagnosed I've never had that kind of clear cut difference between disease and.....not disease. I just seem to have varying degrees of disease activity.

 

It's like a pot simmering on the stove. Sometimes the heat gets turned up and the pot boils over, and sometimes it just simmers away in the background, but no one ever turns off the stove.

 

I was at the eye doctor the other day, dealing with some fun inflammatory eye problems (thanks Crohn's!) and I was asking him if the increase in medication might help with the inflammation in my eyeball. His response:

 

"I think it might. You know, some people are just really susceptible to inflammation. Inflammation from your Crohn's, inflammation in your eyes, it's all just inflammation. You just have a lot of inflammation going on, so lots of things get irritated. You just have a lot of inflammation going on. Inflammation inflammation inflammation inflammation inflammation inflammation inflammation."

 

Just kidding about the last part, he didn't really say it, it's just that after the first part I kind of tuned him out and he sounded like that teacher in Peanuts. Also, thanks for the pep talk Doc! This is why I don't feel guilty for stealing eye drop samples from your exam room.

 

I had a really good two months before April (and now May). Even a few good days will lull you into a false sense of security, so imagine what two months will do. All of the work you do in those good months, all the progress you make and the positive steps you take in your life, grinds to a halt. I was beating myself up the other day for not pushing through this kind of inertia that takes hold when I'm not feeling well, and I realized that along with the symptoms comes exhaustion, a kind of exhaustion I just settle into now. I just hole up in my bed with my cell phone, good magazines to take with me to the bathroom, six different layers of blankets (for the night sweats, when I get too hot and then when I freeze because I'm covered in sweat and have kicked half of the blankets off the bed), and an easy sense of resignation.

 

That's what I'm working on now. That's what I've been working on for the past year, when I haven't been blogging. How do you plan a life around an unknown quantity of good days, and how do you push through the inertia, the resignation, the self-defeat that so easily invades the bad days?

 

I haven't figured it out yet, but I'm trying.



Post #118: Colon fear

ooooooh, symbolism

Oops, there goes another month between posts. To be fair, I've had two colds in the last two months, but an excess of mucus does not impede my ability to write. That would be laziness (or forgetfulness, or both).

Tonight I am thinking a lot about fear; more specifically, colon fear. I've dealt with my fair share of anxiety; I know how the body feels when it panics. I know what rational thoughts to tell myself to calm down; I understand that just because something feels scary, it is not necessarily so. Repeated exposure to anxiety producing situations have allowed me to (somewhat) separate the feelings from the reality. It took me years of, for lack of a better word, desensitization to be able to attain this perspective. I've had an anxious brain my whole life; I've had an anxious colon my whole life; but I've only had an ANGRY colon for a few years. I used to think that fear was fear was fear, but lately I'm realizing that colon fear is different. I'm not desensitized to it yet. You would think that after a year or two's worth of daily cramps and pains and other symptoms I would stop mentally packing my hospital bag every time I spend an agonizing hour on the toilet; but (confession time!) I still sleep with a phone next to my bed and a sports bra and sweatshirt by the nightstand, should I need to get dressed in a hurry in the middle of the night. Colon fear is still very real for me.

Now that I've pretty much concluded that my new "normal" isn't very normal at all, I've been putting out feelers into the real world, trying to figure out what I want to do next and how I can balance the unpredictability of my colon with the needs and demands of the rest of the world (friends, employers, etc.). I've been thinking about what I want to do, and what I can do, and I've come to realize that my colon fear has been clouding and confusing my conclusions.

I heard from an old friend today, who has been as understanding as possible about my AAC and the limitations it places on my life. Hearing her voice on my voice mail made me smile and think of the hijinks that would ensue if we lived in the same city. But we don't. I rarely see her, and that sucks. There's a reunion coming up, and a lot of my friends will be there, and part of me would love to go, but then colon fear rears its ugly head and my mind is inundated with the unknowns of travel, the lack of control over food and bathrooms and transportation, the sick people on the airplane, being away from my doctor and a hospital system I'm familiar with.....the list goes on and on. In any given week I have a bad day or two. How does that look when I'm thousands of miles from home?

The reality is that people with Crohn's don't cloister themselves into hermetically sealed living pods (I wish) away from all of the unknowns of the world, from flu-stricken seatmates to closed bathrooms to problem foods (what if all they served at reunion was lettuce!? ahhhhh). I've been trying to stay in the proverbial pod, and it feels safe, but really it's a prison of my own creation (see illustration above). Part of me wants to break free-to live life with reckless, germ infested abandon-but the colon fear wraps itself around my brain, whispering consoling thoughts about missing life's events and doling out a never ending supply of hand sanitizer.

Someday, my hope is that colon fear will just become like any other fear, something to be considered and put in its place. For now, though, it seems too large to conquer. The catastrophes it promises still seem possible to me. Pre-diagnosis, I was always feeling like I was waiting for the next bad thing to happen, for the next shoe to drop. At this point, I've been hit in the head by any number of falling footwear, and I can't shake the fear that they will keep falling and falling and falling.

And it's that thought, that fear, that specific colon fear that will keep me grounded and away from some of my very favorite people in the world. When it's all typed out, plain on the page, it really does seem like a lot to give up.

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 #116: My holly jolly colon

Get in my face, you delicious little sugar grenades. 

Late night, 3 a.m. Awake and in pain. Sound familiar? This, my friends, is the worst kind of SSDD. 

I drenched the sheets with sweat. I remember, when I was trying to lay perfectly still so that I wouldn't move and make the pain WORSE, that I seemed to be sweating between my toes. Pain twisting my insides, shaking, forcing myself to take slow, measured breaths, failing and hyperventilating a little, and this is what pops into my head!?

Toe sweat: is that a thing? Do you sweat between each toe? Are there sweat glands down there? Is it weird to have sweaty toes? I mean, I always think of feet being sweaty, but not the toes, really. Is each little space between them like an individual armpit? Hmm. 

All weekend I baked (6 different kinds of cookies, in your face MARTHA), and then ate cookies and made myself sick. After a particularly sugar filled binge yesterday morning, I ate a veggie filled lunch to compensate. So, sugar or carrots? Cookies or zucchini? Peanut brittle or celery? What exactly set off my AAC? Hard to say. 

Not that it matters, whether it was the cookies or produce, when you're in bed at 3 a.m. sweating between your toes. 

But oh, that familiar holiday food paradox. I'm talking about the way the holidays (I'm looking at you Thanksgiving and the entire month of December) trick you into thinking that for some reason you DESERVE to eat real food during this specific time period, as if the unwritten (and unknown) laws of your tricky colon suddenly don't apply when the world is decked out in pine boughs and velvet red ribbon and holiday fucking cheer. 

It doesn't matter what your colon did yesterday, or the week before, because all of a sudden it's THE HOLIDAYS and you should let yourself enjoy that cookie, that candy, that giant roasted turkey leg (or whatever). Come on! You're around people who can eat whatever they want, and you soooooooooo want to be like them. The urge to "pass" as a normal eater is never so strong as during this particular season, so you let down your guard a little, relax your strict food rules, and indulge, as though hypnotized by listening to "White Christmas" one too many times. 

You swap Christmas cookies, and go to festive holiday lunches, and sample a few too many of the treats that you bake for other people. And then at 3 a.m., the pain comes, and the natural conclusion is that you DID THIS TO YOURSELF. This notion is further reinforced by the first thing people say when you tell them about your latest setback: "Well, was it something you ate?"

Nothing like a little internal (and external) food shaming to keep your sore colon company!

Here is what I know: my colon does this sometimes, and it doesn't matter what I eat. But it's hard not to draw the reasonable conclusion, especially during this season of unrestricted, mindless eating. I'm not immune to the lure of sprinkles, and I'm a sucker for stuffing. Guilty as charged! But this was not my fault. Fistfuls of Christmas cookies didn't help the situation, I'm sure, but the colon has a logic all its own. 

So now I'm sitting here typing and sipping my meals through a straw. I did have a pretty good run: I managed to swing Thanksgiving, and some of December, before my body got up and slapped me, reminding me that ultimately this is my reality, this 3 a.m. pain, not those few days of gleefully pretending my colon was the same as the other girl's. 

I can (and will!) enjoy the rest of the season, the first snowfall and the exchanging of presents and the visits from family. But now, as pain throbs in my side, I will do so with my mouth closed and my guard up. Depending one when the pain lessens, I might be eating soft foods till New Year's. Like it or not, that's just the reality of the situation, my situation, the one that involves an angry and unpredictable colon. I didn't ask for or cause this (repeat to myself a thousand times), and nothing takes the shine off holiday festivities like a bucketful of Prednisone, so I'll be taking it easy. 

And while I'm being kind to my body, I'll try to remember to be a little kinder to myself, and remember that this season can still be celebrated in a way that doesn't involve the massive consumption of butter, sugar, and eggs. There is, hopefully, seasonal happiness beyond the cookie jar. 

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 #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 #113: SSDD

It's less offensive with a floral background. 

Welcome to the story of my life: same shit, different day. And I don't mean that literally, of course, because we all know my bowel movements aren't nearly that predictable. 

Last week, I fell asleep on the couch, nbd, when I woke with an alarming, stabbing, tearing, searing pain in my side. Last time this happened, almost a year ago, I was so alarmed that I went to the ER-I had never experienced pain like that before, and it scared the hell out of me. I thought something was torn or twisted or ruptured, and I was both relieved and frustrated when the doctor on call shrugged his shoulders and I walked out of the hospital with a clean CT and no answers. This time, same pain, but you know what? 

Same shit, different day. 

I was alone, and the phone was out of reach, but I calmly told myself to breath through the pain. Some insipid morning talk show was on, and I tried to listen to distract myself while feeling like someone was shivving me in the intestines (can you use that as a verb? As in, "to shiv?" I'm not down on my prison grammar). When the pain lessened a little, I slowly rolled onto my back, then onto my other side, and then sat up. The pain got better. I called the nurse out of habit, but I had no intention of going to the ER. I didn't expect her to have any insight into the problem, and she didn't, and I had already resigned myself to welcoming back my old friend, le liquid diet. 

Same shit, different day. 

That first sip of protein smoothie tasted like sweet, sweet defeat. 

The recovery from this....whatever it was (the doctors don't know either! wheeee) is going more quickly this time, and I've been adding one or two solid foods a day, waiting to see how my AAC will react to the softest, blandest, safest foods imaginable, dealing with the nausea and pain and discomfort that inevitably comes after eating something innocuous (like eggs). Nervously trying new foods, hoping not to wake up in pain or obstruct. 

Sound familiar? Because that's a big, heaping helping of same shit, different day. 

I went back to see my old doctor, and we made up a little-I didn't cry, we traded circumcision jokes, it was all good-but he had no idea what was causing my pain, and little advice about how to proceed. 

You know where to find that book in the library? It's filed under same shit, different day. 

I'm now waiting for insurance to approve the next test that might give me some answers, the one the new doctor ordered. I saw him a month ago, he submitted the claim, something went wrong, it was resubmitted, and now it will probably (best case scenario) take at least another two weeks to approve.

You know how to get there? You just merge onto the freeway, and take the same shit, different day exit. 

Oh, and this test? I have to swallow a tiny camera, which may or may not get stuck in my AAC. It has a 5% chance of requiring additional intervention/emergency surgery, and I have to prep like I'm having an actual colonoscopy. My doctor actually said it wouldn't be such a bad thing if it got stuck, because then they would know where the problem was. 

Hmmm, this room is a little musty. Maybe I'll light my same day, different shit candle. 

So here I am, back to where I was a year ago (minus the steroids, thankfully). I'm uncomfortable, stressed out, and waiting for a test that may or may not yield any useful information, but which will surely be a pain in the ass (literally and figuratively) to go through. Insurance is being difficult, I'm playing phone tag with doctors old and new, and I obsess and worry over what I eat, which makes mealtimes AWESOME. I wait for pain, and I wait for tests, and I wait for answers. I sleep a lot, and the days pass, and I try to find happiness in small things. Every day I turn into myself a little more, and reach out a little less. 

You all know the chorus: SAME DAY, DIFFERENT SHIT. 

I want a new song. 

Post #112: The results are in....

Thanks Doc!

Last week, after hounding my nurse/her assistant, I got back the test results I've been waiting for.....and they're normal. I was hoping they were not. I was hoping to get a justification to switch meds and a piece of paper to shove in my tiny doctor's face so I could say, HA! There is something wrong! I was right, you were wrong, and here's the proof (drops mic). 

Fucked up, no? 

To wish that you were, indeed, actually more sick so that your doctor will listen to you? Now I feel kind of defeated, like I made such a big fuss at the last appointment about how something isn't right, and the medicine isn't working, and now one tiny number on a lab slip has rendered my objections worthless.

Ever since I got the news I've felt like a half deflated balloon, the kind that floats dejectedly halfway between the ceiling and the floor. 

A sad balloon. 

I get teary eyed for no reason, and I'm having a bad colon week. Everything seems harder than it really is, and it turns out that it's much easier to hide in bed or watch bad TV than confront the realities of my current circumstances. Realities that include the fact that my doctor may have helped me as much as he can, or that I feel like I have hit a mark where people are essentially expecting me to just get on with my life already, sick or not. 

I see a new doctor next week to get a second opinion. I'm seasoned enough not to get my hopes up too much; I'm not expecting this guy to have all (or any) of the answers, but it will be interesting to hear his thoughts. It certainly can't hurt to have another pair of eyes pour over the paper trail of my sad colonic adventures. 

And while I wait, I will try to focus on the things that don't suck. The weather is getting cooler, which means it's time to break out the fleece. My AAC is tolerating pho again (wooo!). And, my city got a new radio station that plays the 90's hits I remember from 6th grade dances; I mayyyyyyy have almost been late for an appointment last week because I was rapping along with Salt N Pepa. I defy you to be depressed when Shoop comes on-it's just not possible. Seriously. 

Also, and most importantly, I'll keep reminding myself that no matter what any doctor tells me, I feel how I feel, and that can't necessarily be quantified by a lab. After that last appointment, I need the reminder. 

Post #111: Late night lightening lessons

GAH. 

Last night, a big storm swept through, and all day the news channels were wetting themselves with excitement over the impending atmospheric drama. Consequently, I spent the day in a state of agitated expectation, awaiting the coming fireworks show that would play out in the sky above my house. 

I really don't like thunder and lightening. They unsettle me. We get strong storms here, and the thunder is so loud the house actually shakes and quakes with every giant BOOM. I know some people love thunder storms; they throw open the windows so they can smell the electrified air, feel the wind kick up, watch every flash and strike and have their hearts beat with an elemental excitement instead of fear. I am not one of those people. 

I was alone in the house, and determined to act like a freaking adult and get on with my life. I was in bed reading-distracted, as the heavy rain began, when it happened: a totally unexpected, LOUD, house shaking body rattling clap of thunder. I literally jumped up in bed and grabbed my heart. The shock of it all was probably more frightening then the thunder itself, but my first instinct was to turn off the light, roll into a ball beneath the covers, and scan the horizon for future lightening strikes, so I could count the seconds and miles between light and sound, to gauge when the next BOOM might hit. 

I was trying to control my breathing, trying to get my heart to stop sprinting and return to a peaceful stroll, when the lightening strikes started coming closer the closer together. It looked like a giant strobe light had been installed in the neighborhood: light/dark/light/dark. I curled into myself further, already painful joints pulled closer to the body, stomach tight and nervous. 

The lightening kept coming, as did the thunder-closer and then further away, or far away and then closer. It was hard to gauge where anything was happening. I was taut, waiting for the next onslaught, but it was difficult to determine a rhythm. Better to stay ready, I thought; better to stay small and stressed so the scary things won't be so scary when they happen. 

And then, a tiny voice in my head: you can't control this. Any of this. 

You can't control this. 

You are not in control. 

The thought was like a shot of Valium. Instant calm. I unfurled. 

The more I thought it, the calmer I felt: I can't control this. Come on loud noises and bright lights! I can't control ANY OF THIS. I am not in control. 

I turned over and stopped watching the storm, and as the light show played out across the walls of my darkened room, I fell asleep. 

I woke up cold, tangled in damp sheets, only to fall back asleep and  wake up for the same reason. Night sweats. Was it the storm or the Crohn's? Hard to tell. 

Either way, I couldn't control it. 

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 #109: Welcome Home!

Does hamburger guy kind of look like Roger Ebert? Maybe not. 

Thankfully, my colon was pretty chill on vacation. 

It waited until I got home to freak the f-out. Hooray! 

This is just example #1596 of the complete mindfuck that is Crohn's. After a relatively stable month, where you eat out all the time, and tolerate a wide range of foods, and have no pain, suddenly: BAM! Your angry colon strolls into the joint and bellies up to the bar, orders a few shots of tequila, and TEARS THE PLACE DOWN. 

Try to limit my stress, you say? Try to stay positive?? YOU TRY STAYING CALM WHEN YOUR COLON IS UNPREDICTABLY ANGRY. Also, bite me. 

It has not been a good week. Last week was worse. 

I am so, so tired of all of this. 

I got some blood work done, to see if I can figure out why my AAC is being an AAC, but really? Those numbers won't give me much clarity. I have a doctor's appointment next week, and I doubt I'll learn anything new there either. I have been avoiding going back, first  because I was feeling better, and now because I'm feeling worse......it doesn't make sense to me, either. I don't want to see my doctor, because I don't want to hear what he has to say. I don't want to get my hopes up. I don't want to hear anything that will make me more afraid or stressed out. I don't want to hear any of the familiar platitudes, or get fed any of the familiar lines. For instance: 

If he says I'm in clinical remission.....

If he blames this on my IBS (lucky girl, I have both!).......

If he tells me to give this medicine more time........

I will probably slap his tiny doctor face. Or leave. Or, realistically, start to cry, because I am too tired and frustrated to do anything else. 

I was going to try to write a funny post about how I always read food magazines in the bathroom (true), but I don't have the energy. I had a bad colon day. 

And judging from the state of things down under, I might have a bad colon night. My AAC is on another bender, soused to the gills and looking to start a fight. 

And there is nothing I can do. Welcome home, indeed. 

Post #108: The Spinach Sprint

Lettuce: nature's leafy green ex lax. 

Hello neglected blog! I have been on vacation-relaxing, reading trashy novels, eating PRODUCE. 

WHAT!? I know.

Ever since I have started this new diet, I can now digest "skins" and seeds and a small amount of roughage. Green beans and tomatoes and unpeeled cucumbers, oh my! Still working on nuts, but PROGRESS!

One of the things I used to enjoy most about vacation was the unfettered access to delicious, fattening foods. Vacation was a time to eat out all the time, and if you did go grocery shopping, to buy sugary cereal. This was a huge thing in my household, which was firmly entrenched in the Grape nuts-Cheerios-sticks and twigs camp of high fiber cereals. But once a year-during vacation-my sibling and I were allowed to each pick out one box of nutritionally worthless, chemically altered, neon-colored, sugar saturated goodness. Cereals that had CHARACTERS (I salute you Cap'n!) and that were advertised on TV. Cereals that were so wrong, they were so right. 

I remember one year buying a box of cereal that was made up of tiny chocolate chip cookies. Cookie cereal! Mind. Blown. 

Vacation was different this year, and frankly eating out hasn't been the same since my colon became committedly angry. Knowing that I would have limited control over food options-at least for the first part of the trip-added a layer of anxiety to what should have been a relaxing time. 

At first, everything went swimmingly. Servers were accommodating about my weird menu requests and substitutions; basically, any restaurant anywhere will serve you grilled chicken breasts and sliced tomatoes. I was doing the tourist thing, I was eating out for three meals a day, and I felt OK. So I got a little cocky. Can you see where this is going? Let me take you there!

After a few days of being exceedingly careful and cautious, I was feeling a little more mellow about the eating out thing. That night the server placed my customary chicken on a nice bed of mixed greens. I felt empowered. Puny lettuce leaves!? You are no match for my relatively less angry colon! I miss salad-I love salad! I had three bites of salad and felt fine. A little smug, even. 

The next morning, I was calmly eating eggs and toast when my colon howled in protest. Without a word to my dining companion, I quick marched to the bathroom and bolted the door closed. The bathroom was between the kitchen and dining room, and there were people constantly walking past the door. 

** Warning! Here's where a little TMI happens. And then will probably happen some more. **

There is a special kind of desperation that comes with having violent bowel movements in a public place. Thankfully, this was a one room bathroom-no stalls-but people were constantly outside the door. I couldn't tell if they were waiting or going back and forth to the dining room, but it felt public, and I felt rushed and embarrassed and sick. Three times I thought I was done, had washed up and had a hand on the door knob-when I had to start the process all over again. It was incredibly frustrating.  For those of you with Crohn's, or angry colons of any variety, you know these things sometimes come in waves. 

A while later, I walked out and felt my cheeks burn as I took my seat, wondering if anyone else in the cafe had been waiting to use the bathroom, or had noticed I had been gone from the table for the past 10 minutes. Mentally shaking myself off, I prepared to continue my day. We headed off to the local giant bookstore, which is really like a literary mini-mall. I could spend hours there, lost in the stacks, inhaling the mingled odors of books old and new. I had just started browsing-I was in the C's-when I started to sweat. 

I ignored it-surely I had take care of all this at the restaurant? When I felt the alarms go off down under. Apologizing profusely, I broke up a conversation a clerk was having with another customer and asked for directions to the bathroom: down the hall, up two flights of stairs, and then down another hall. 

PANIC. 

As I raced up the stairs, I thought I might lose control before I hit the stall. When things are THAT URGENT, the last thing you want to do is JOSTLE THE SITUATION, or hike up a few stairways, flinging aside small children and loitering tourists. I was also carrying a stack of books, which I temporarily shelved on a cart, and made it just in time. To a crowded public restroom full of mothers and children. 

Sigh. 

At that point, I was just happy not to be pooping behind a bookshelf. I was feeling a little sorry for myself, thinking about the what ifs-what if there was a line for the bathroom? What if I didn't make it in time?

But I did make it in time-two more times to that particular bathroom alone. 

Feeling depleted and exhausted, I still managed to find a few books, and then downed some Imodium to prepare myself for the THREE HOUR DRIVE to our next destination. 

I'm not sure what I'm writing about all of this here-it certainly wasn't my finest hour, or my new diet's, or even my colon's. But sometimes, this is what it's like. Sometimes you get lucky and don't embarrass yourself (too much) in public. 

For me, this is just an example of how things can go from good to bad in an hour, or a day. How no amount of preceding health can negate the possibility of sudden sickness. I gambled with the three bites of salad (and I'm not exaggerating-literally, three bites) and I paid the price, but sometimes the reasons for the colonic onslaught (ha, that sounds like a metal band) are not so clear. 

You can do everything "right" and still find yourself in a desperate race for the toilet. 

All in all, I had two bad days on vacation. I brought my injectible medication and stashed it in a  hotel minibar. I made it through. It's easy to forget that when you focus on the desperate moments, when you're whimpering in a deli bathroom and willing your body to just let you be normal for a while.

I made it through, and I had a good vacation. And I can go back to that bookstore next year with my head held high, knowing I didn't leave a little present behind the stacks. 

Post #107: A failure to communicate

Here comes the bride.....all dressed in CONTROVERSY

This week has been hectic. I have family visiting-two adults, two young kids-and it's been a whirlwind of sticky apple juice fingers, trips to visit the pear trees in the backyard (or parrot trees, as one kid calls them), dashing around the playground, touching ALL THE THINGS at the children's museum, dark chocolate birthday cakes, and organic mac&cheese.

It's not the mess or the chaos I mind, although I have to frequently resist the urge to wipe down all the surfaces of everything in the house (how did cherries get smooshed into the upstairs carpet?!)-it's not the lack of privacy (closed bathroom doors? ha!), or even the invasion of my personal space, something I am usually wary about. When a tiny person wants to snuggle with you on the couch and watch nature programs, you stop worrying about the fact that he probably didn't wash his hands the last time he peed and just let him curl up next to you and put his little feet under your butt, to keep them warm.

What has me kind of depressed is an interaction with one of the grown people. Somewhere along the way, I picked up a flu like illness-my joints are swollen and painful, and my throat feels as though I've been gargling with glass chips. I'm guessing that despite copious amounts of hand sanitizer, my immune system was no match for the DECADES worth of germs coating every surface of the children's museum, and someone probably sneezed on me when I wasn't looking and there you go (update: I have strep throat! ugh).

Naturally, all of this occurred half way through a jam-packed visit with planned outings to the aquarium and zoo, dinners out at favorite restaurants and various other adventures. I could feel the illness coming, and as I hobbled out to the patio my family member asked what was wrong, and I told her.

"Why are you sick??" she asked in an accusatory tone, her brow furrowing in annoyance.

I was in no mood. I believe I told her to ask my mucus, because I had no idea how or why (really?!) I got sick.

Later, as I was curled up on the couch watching reality bridal TV (no judgement! I'm sick!), my temperature rising, she came and sat down next to me. There was a story about a bride with an autoimmune disease trying on dresses. She had huge bruises up and down her arms, and she talked about how from day to day, she didn't know if she would lose weight, gain weight, have hair, have no hair, or be covered in sores.

She tried on dress after dress with one particularly large sore on her arm, something she was obviously self conscious about. Simultaneously, we had opposite reactions; I commented, "Poor lady, that looks painful" while my family member said, "Ewww, gross, why are they showing that?"

It was then that I had a moment of realization: this family member will never, ever understand my Crohn's.

It may seem like a leap, but I realized she just doesn't have the compassion chip necessary to process chronic illness. It will never be anything other then an imposition on her, an annoyance, something to be irritated or disgusted by.

Some people try to be empathetic but just can't understand because they have no experience with chronic illnesses, and some don't even try. They may be sympathetic on the outside, but on the inside they are mentally watching the clock and waiting to change the subject. Maybe this is because of discomfort, or impatience, or the feeling that chronic illness is an inherent weakness (WHY are you sick??)-but they will never approach the issue with anything other than their biases and impatience.

I had been trying to explain things to this particular relative, to bring her into my experience, because it's an important part of who I am right now. That stops today. It's kind of freeing to stop putting myself out there, making myself vulnerable, because I know that she doesn't care to understand.

As much as I would like to, I can't simply excise this part of my life. Since my diagnosis, it's frequently been the most time consuming, emotionally draining, physically exhausting reality in my life. I think this family member has been waiting for things to go back to normal (that's what I want too!), but in the meantime-this is who I am, and this is what I'm going through. 

I won't pretend that these things aren't happening. I won't sugarcoat the truth. I don't have a choice about going through this, but people in my life do have a choice about whether or not they want to hear about it. I forget that, as I tend to go with a full transparency approach. But in the future, I'll be more watchful and wary. I guess I just assumed that people who cared about me would want to know, but as with anything else, I guess there's an interest threshold, one that i have apparently exceeded with this particular person. 

This person has a choice. I keep telling myself that. 

But it still feels like rejection, of me, my disease, and the way I live my life.