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 #104: Team Picky

And amber waves of.......inflammation? 

I have a confession: I used to be a self-righteous diet snob. 

I used to make fun (in my head) of the chia seed slurping, quinoa snorting, ancient grain loving, make-your-own-nut-milk types. The hipsters and the raw juice fanatics. The whippet thin ladies in lululemon yoga pants who populated the aisles of Whole Foods. The suit wearing professionals pouring over ingredient lists with laser like focus, paying $8.99 for a package of gluten-free brownie mix that will invariably look (and taste) like sewer sludge. 

I had more tolerance for the true die hard hippies, the kindly men and women who cruised the bulk item section of the local co-op, buying five pounds of organic dried black beans to cart home on their bikes (in the rain. whilst wearing Tevas and hiking socks). 

Of course, there were those with true food allergies, but in my cynical mind, the proliferation of gluten-free fake out foods in every local grocery store was due more to the whims of an upper middle class consumer base obsessed with following the latest diet trends. Gluten, in particular (and now to some extent soy, dairy, and refined sugars) seemed to be the cause of all of our health woes. It was the devil in grain form. 

My bullshit meter exploded. This is the new Atkins, I told myself. People have evolved to enjoy a varied diet, which includes such illicit foods as pasta (gasp!), bread (shock!) and muffins (horrors!!). I scoffed at the people who strove to eat like cavemen, or only ate hot dogs and bricks of cheddar (seriously, I know someone on Atkins who did this), or ate according to blood type. 

Before Crohn's, I used to pride myself on being a "good eater." This meant that I was flexible. Ethiopian food? Vietnamese? Japanese? Greek? Sure! I could find something to eat anywhere. I enjoyed trying new foods. I ordered off the menu without substitution. I could go to a dinner party and eat what was served without hesitation. I could overindulge one day and be fine the next. I wasn't afraid of food. 

I'm not a "good eater" anymore. 

What I didn't account for, in all of my supercilious, judgmental assumptions, was that for some of these people, diet was a last (or maybe for the smart ones, first) attempt at mediating illness. I looked at these shoppers and saw picky eaters, when in fact I might have been staring at sick ones. Like me. 

I resisted changing my diet since my diagnosis. I counted on the medicine and the doctors to make me feel better. In some ways, I am better, but in many ways I am not. As I said in my last post, I was waiting for the turnaround, so it didn't make sense to me to radically alter my lifestyle in the meantime. I ate what I could tolerate, justifying my diet with the oft repeated "diet just doesn't matter with Crohn's" refrain I kept hearing from all of the medical professionals around me. 

Lately, though, my thinking has changed. How can what I eat not matter? When my nurse, talking to me after the doctor had left the room, suggested an anti-inflammatory diet, I took it as a sign. It was time to try something new. 

All of this is to say that next week, I join team picky. 

I'm not going to name the diet I'll be trying, because I don't want to advocate any specific dietary restrictions, and I don't even know if it will yield any positive results in my case. I will say that I won't be eating dairy, wheat, or refined sugar for the foreseeable future. The diet I picked is one with a lot of clinical research around it, and I'm working with a dietitian to map it all out. 

I am of course afraid that this will make things worse, but I play to go about it in a very slow, measured way; I'm also curious to see what effect, if any, this has on my health. 

I figure if I can give the super scary injectable medicine a six month trial run, I can extend the same opportunity to a diet, no matter how restrictive. 

And to the people I was silently judging for buying  6 dollar bags of gluten free pretzels: I'm sorry. I was an asshole. If those pretzels made you feel better, I was in no position to judge your choices. You might see me wandering the aisles of Whole Foods in my yoga pants-please be kind. Also, save me some snacks. 

Post #77: I think I failed the support group quiz

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

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Why is this pic under "support group clip art?" Perhaps it's a group for big 80's hair and questionable facial hair decisions.

 

Today's prompt: Questions I have for other patients

 

Oh prompt. I have so many questions! It would be easy to ask these questions at, say, a gathering of other Crohn's patients. Like a support group! (sound of running down a hallway and slamming a door).

 

Ok, I'm back. I don't know why I am so adverse to the concept of a Crohn's support group. It has all of the things I say I'm searching for....but the idea freaks me out. I will happily share my concerns and questions with friends who have absolutely no idea what I'm talking about (TNF blocker whaaaa?), but ask me to sit in a room with 10-12 other people experiencing the same symptoms and possibly taking the same medications and I will cling to the door frame and refuse to leave the house. I write a Crohn's blog, but I am hesitant to talk about Crohn's in person. COMPLICATED!

 

To try to sort out my feelings about support groups, I googled "are you ready to join a support group?" which was like the 10th most popular answer after "are you ready to have a baby" and "are you ready to quit smoking." Here are some questions, adapted from here:

 

Do you enjoy being part of a group?  If that group bakes cookies and wears yoga pants and       watches "The Breakfast Club," then yes. If I am required to talk about FEELINGS, then no.

 

Are you ready to talk about your feelings with others? See above.

 

Do you want to hear others' stories about their Crohn's? No. Maybe. Scary. Run away!

Would you like the advice of others who have gone through different Crohn's treatments? Yes.

Do you have helpful advice or hints to offer others?  No:(

Would reaching out to support other Crohn's patients make you feel better?  Sure?

Would you be able to work with people who have different ways of dealing with Crohn's? You mean people who shun drugs and only eat south growing tree moss and think I'm DOING IT WRONG if I don't follow their strict moss recipes and refuse to CURE MYSELF with their forest based diet? Then no.

Do you want to learn more about Crohn's and treatment issues? Again, maybe. Scary. Run away to the forest for post group moss collection!

Ok! After taking this quiz I sense some ambivalence about the support group experience. Actually, let's call it what it is: fear. I am afraid of making the existence of my Crohn's any more real than it already is (i.e., by talking about it), or seeing someone who is struggling with advanced disease. That would be kind of devastating. I don't want to see what may or may not be in my future.

At some point, I think it would be a healthy thing for me to face my fear, put on my grown up lady pants, and make some connections with people who are like me-who have Crohn's. If/when I do so, here are some questions I would ask:

1.) How the hell do you hold down a full time job and deal with an unpredictable colon?
2.) How the hell do you hang out with babies (germy, germy babies) without getting sick? I always get sick from baby germs.
3.) How do you turn off the constant worry?
4.) What are your tips for being a better family member/friend when you feel like crap all the time? 
5.) Have you tried tree moss? Was it helpful? (kidding!)
6.) What do you think of delaying a taper off steroids so the decrease in dosage doesn't coincide with Thanksgiving, which would allow you to eat a greater variety of foods?

That last one is topical, but the rest are pretty timeless. Maybe someday I'll get a chance to ask them, in person, away from this blog. Face to face.



Post #75: Fail better

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

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My strengths? Biceps and an excellent "Blue Steel." My weaknesses? Hair gel and, apparently, awkward posing.

  

Today's super fun times prompt: My strengths and weaknesses list post

 

Ha! I can't stop looking at that picture. It's like he's sexily inviting you to thumb wrestle. Getting back to business, I am a huge fan of making pro/con lists, which is really just another way of listing the strengths and weaknesses of a particular choice; so now I guess I'll make one about myself.

 

I started making the list, and I don't like where it's going (ha!). As a person or a patient, I don't think I fall so neatly into clean divisions: good/bad, strong/weak, right/wrong. I think I am constantly improving/falling behind, and I need to find new labels that encompass that movement. Thus:

 

I aspire to be:

A well informed patient. This means scouring the Internet (hellllllo, Dr. Google), scientific journals, books, magazine articles, podcasts....any resource that might offer new insights into this disease. It also means being organized for doctor's visits; keeping track of routine testing; and researching potential treatment options.

 

Patient. This is a tough one.

 

A good caretaker of my body. Even though my body doesn't always accept varied and nutritious foods, I keep trying. And I've been attempting to incorporate more exercise into my routine, even if it ups my nap time.

 

A strong medical advocate for myself. I've discussed this at length, but it's important to me to understand what is going on with my body, and what the potential benefits/side effects of any treatments might be. I seek out a lot of opinions, ask a lot of questions, and do a lot of reading, all to make the best, and safest, choices about my health. At the end of the day I am responsible for this body; sometimes, especially since my diagnosis, it often feels like an overwhelming and scary job. It would be easy (easier?) to just accept the directives of my doctor at face value, to take the drugs he recommends and ignore my misgivings, but I feel an overwhelming protectiveness that prevents me from handing the reins over to him completely.

 

Kind. To myself and those around me. Again, a work in progress; it's tough to maintain the social niceties when you are completely exhausted and depleted.  

 

I am working on:

 

Trust. Trusting myself and my doctor. I don't trust very easily. At our last appointment, he stopped what he was doing, and looked me in the eye. He poked my knee with a file he was holding, and said, quietly, "You need to trust me."

 

It's something I struggle with. I need to find a balance between blind acceptance and informed agreement, but fear is complicating and confusing every choice I make. It's not as easy as just trusting someone-or maybe it is. It's complicated. It's scary. I'm working on it. NEXT!

 

Humility. I don't know everything and I'm not the world's expert on, really, anything. Except my own body, which is why if you try to tell me I'm not experiencing something I am, I will head butt you.

 

Patience. How can this be on both lists, you ask? Well, there are good days and bad days.

 

Friendship. I have let this disease make me kind of a shitty friend. It's not an excuse; it's just the reason for my shittiness, and it's something I can improve.

 

Giving back.

 

Reaching out. This one links up with humility; I am not so good at asking for help or support. Giving it? Sure. Receiving it gracefully? Not so much.

 

 

Well, there you have it. A few of my qualities as a person and a patient. I feel like they could all be lumped together in one giant category titled: "Guess what? I'm HUMAN." but I'll stick with what I've got.

 

It's all a work in progress. Maybe what I'm getting at could be best explained by one of my favorite quotes, from Samuel Beckett:

 

 

Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.

 

 

That has been my motto for the past couple years: try again. fail again. fail better. Suceeding is not the point; trying is. Call it what you want: persistance, strength, will, or pure stubborness. Trying again (and again and again) takes heart. Failure is just another opportunity to clear your vision, shake off the dust, and start fresh-the opportunity to test and prove that heart all over again.



Post #50: I'm always rock

Yeah this is pretty much how all of my conversations start

This weekend I went to a bbq, and ate boiled potatoes while everyone else ate juicy ribs shellacked in a spicy sauce, arranging the spent bones on their plates like desert rainbows. There was a bright, fresh salad with nasturtium blossoms, and plum cobbler for dessert. I sat in the smoky light of a citronella candle in a tin pot, drinking seltzer and clinking my glass with everyone as the wine caused the other guests to make increasingly off color toasts. By the end of the meal, everyone was kind of leaning against each other in the slight chill of darkness, resting foreheads on shoulders in the kind of easy camaraderie that comes from longtime friendship. It was pretty perfect, except for the nausea and the way the potatoes inexplicably coalesced into a painful knot in my stomach. The Crohn's holiday is over.
 
This is how Crohn's is, sometimes-the tear at the edge of an otherwise lovely photograph, the DVD that skips during the most important scene, the beautifully frosted cake where you forgot to add the baking soda, or added too much. Just a touch of wrong in an otherwise pretty scene.
 
At the end of the night, when we were all standing in the dark street, gossiping and laughing and delaying departure as much as possible, one of my friends gathered me into a bear hug, and invited me to come visit him and his wife at their vacation house, about an hour away from my own. "Just come." he whispered, while the others lingered and laughed at a picture on someones cell phone. "Just get in the car and do it. We'd love to see you." I leaned in, and looked up, and whispered back, "I'll come if I can. You know I want to see you guys too." "I know. I know."
 
He let go.
 
I felt old and sad then, the evening's magic departing. What I said wasn't exactly true; what he said wasn't exactly true, either. I could go, even though my AAC is unpredictable; the vacation house is on a country highway, so it's not like there is a shortage of 7-11s on the way. He said he knew that my intentions were good, but in the back of his mind, perhaps the excuses were growing thin. We tell lies to our friends sometimes, to preserve the relationship. What I really should have said was that I don't feel like going anywhere, that being sick all the time makes me bitchy and anxious and party-averse. What I think he wanted to say was that I should suck it up a little and demonstrate that the friendship was important by showing my face.
 
This is what I like to think of as friendship rock-paper-scissors. Friendship requires a delicate balance of give and take. You need support, and you want to give it. You pick up the check one week, your friend picks it up the next. You are required to listen to a 3 hr. discourse about your friend's ex, who she saw at Whole Foods; in turn, she will read and re-read the bitchy email your boss sent you (which you immediately forwarded to her) and pick apart the secret meanings behind the words. In the game of rock-paper-scissors, sometimes one person wins, but mostly you are both rock.
 
Sometimes, however, there is a disconnect in the relationship. There are situations that automatically win. A head cold beats movie night. A broken car beats happy hour. Sleeping in (after a 70 hour work week) always beats brunch. And lately, it seems like Crohn's beats everything. Weddings, birthday parties, trips to the vacation house-you can play rock-paper-scissors as much as you want, but it's just for show. You're the asshole who yells, "grenade!" and ruins the whole tradition (what, they didn't do that in your grade school?). You're taking yourself out of the equation, because you-your illness-trumps it all.
 
I want to be rock, I really do. I want to "take one for the team" sometimes, and I want to play fair. But it's hard to play fair when you are so preoccupied with the day to day realities of this disease. A good friend makes plans, and honors commitments, and goes to the fucking vacation house, and I am just not a good friend right now. I can't be.

Hopefully, someday, I can see the vacation house for what it is-an excuse to sit in the sun with my feet in the water, hanging out with people I enjoy. For now, it seems like an anxiety producing, stressful situation with too many unpredictable outcomes and the potential for pain, embarrassment, and discomfort. I hope my friends understand that it's really not about them. I hope they can be patient. And when I'm feeling better, I promise to be rock even when I know they'll be playing paper.

Post #49.8: And now for something completely different....

I am thankful for indoor plumbing and that I don't have to poop in this haunted outhouse.

So, it seems kind of douche-y to write about my colon today.

I was watching the news, and there was one quick soundbite about 9/11-a brief montage of memorials at all of the different sites. The President held his wife's hand, and they bowed their heads in a moment of silence. Family members read the names of those killed in NYC. I was struck by the brevity of the coverage, and also by the fact that for the first time, politicians were not allowed to attend the memorial at the site of the attacks. It was, as the newscaster said over and over, becoming a day of private remembrance.

Later, I read a blog where a teacher discussed her feelings when her school held a moment of silence this morning-and she realized that none of her students were born when the towers fell. They had no real emotional connection to the event at all.

Every time there would be a news story about JFK, my mom would always say, "I remember exactly where I was that day." I used to make fun of her-you remember exactly where you were? What were you wearing? What were you doing? And now I know exactly how she felt. I don't feel disconnected from what happened. The pictures of that day, the towers falling, the dusty workers running away from the devastation, supporting each other, the paramedics and policeman and firefighters running towards it. The lines of people waiting to donate blood. The twisted metal beams set in irregular geometry at the site, like disjointed fingers pointing towards the sky. The horror-plain horror-of the newscaster's voice when the second plane hit. I do remember exactly where I was that day. I remember what I was doing, and who I was with. I remember how I felt, far from home and away from family.

It's a moment in time that still squeezes my heart.

So today, instead of talking about my AAC, I am going to make a brief list of things I am thankful for. A few of the Crohn's blogs I read do variations of the "Thankful Thursday" thing, but as useful an exercise as that would probably be for me, I can't bring myself to do it. But today, I think it's important that I try.

In no particular order, I am thankful for:

• a solid group of people who support me, no matter what shape I'm in
• patient friends
• health insurance
• the ability to pay for that health insurance
• things that divert and amuse me (TV, the six million magazines I subscribe to, hilarious neighborhood animals, postcards and letters)
• blogs, which make me feel less disconnected from the world
• this week of respite, courtesy of my steroids
• access to good doctors and nurses
• AMP's
• my living arrangements
• having the luxury (and there's no other word) to focus on my health right now

That is a small start to what should be a long list. It's hard to remember when I feel like crap that I am simultaneously very fortunate to have the help, support, and resources I need. Maybe there's something to that "Thankful Thursday" crap after all.

Post #46: I suck at Crohn's

I'm not a doctor or anything, but I'm prettttty sure that car is going the wrong way. This is not going to end well.

I went out to lunch today with my hairstylist/life coach/surrogate aunt today. She's unapologetically in love with cats, waiters, and old Jewish women. A good 50% of her wardrobe consists of leopard print. She stores things in her bra (cell phone, money) so it constantly looks like she's feeling herself up. She calls everyone "honey" and does so in such a genuine fashion that she totally gets away with it. She rolls her eyes at my bullshit and gives me insight into my problems, whatever they may be. We meet for lunch and end up talking for 2 hours. She always gets the check. I heart her.

I was telling her about something insensitive that someone had recently said about my Crohn's. She's had her own share of health issues, so we can commiserate about these kinds of things. I was saying how incredibly frustrating it is when other people assume they could handle your disease in a more productive/functional way. I've encountered this a lot, and I've been guilty of it as well. Looking from the outside in, it's easy to think, well, are they doing everything they could be doing? Why are they still sick? If I were them, I would be more proactive. I would do x, y, and z to make sure I was really addressing the issue. THEY ARE BEING SICK ALL WRONG!

The message may be cloaked in fake concern, obnoxious advice, or endless anecdotes about the many people they know who have the disease but are handling it better, but it all comes down to this, at the end: you suck at having this disease.

Do you know how hurtful it is to have someone essentially tell you you fail at being sick? I'll tell you: pretty fucking hurtful. If you hadn't noticed, this is something of a sore spot for me, because part of me thinks they might be right. Maybe I should be "over this" by now, maybe things should be better. Maybe I should only eat cream cheese and bundt cake, like my friend's sister's co-worker's niece did-it really nipped that Crohn's in the bud! Maybe I should be running 5 miles a day to decrease my stress levels. Maybe I should be doing hot yoga and drinking kombucha and getting acupuncture (I strongly dislike all of these things).

Eventually, my thinking brain clicks on, and I remember: FUCK YOU. How dare you suggest that you could do this better? I'm doing what I can, when I can, trying to make difficult decisions and live my life with a chronic illness that kind of dropped into my lap right after my last birthday (happy birthday to me!). This is not a graded exercise. This is not an Olympic event. You can't GRADE MY MOTHERFUCKING PERFORMANCE. I'm not aiming for gold here-I'm just trying to figure shit out. That's more than good enough for me, and it will have to do for anyone else.

Hhmmph.

My hairstylist/life coach/surrogate aunt told me a theory one of her clients had about illness: people expect the McDonald's experience. You get a disease, go through the drivethru (see your doctors, get your surgery, etc.), and emerge with pills in hand-and a cure. It's a simple trajectory, and one that people can relate to. You got sick, and then you got well. Illness done, fries consumed, moving on with life.

My disease will never function exactly like that. There are treatments, but no "cure." There will be periods of sickness and (this is the goal) periods of relative health (remission!). Some symptoms will be unexpected. I will never drive away with a McFlurry and a simple solution.

I write all of this to get it off my chest, for sure, but also because as much as I hate the impulse to judge people's "illness performance" I do the same. freaking. thing.

At lunch, my hairstylist/life coach/surrogate aunt  was telling me about a recent health scare, and my first reaction was to tell her how to deal with her health problem. I wanted her to be more aggressive and assertive, and see the BEST doctors at the BEST hospital immediately. She listened to me rant, and then kind of raised an eyebrow and smirked. I was taken aback at the forcefulness of my reaction, and she calmly told me that she was dealing with this in her own way, in her own time, with her own doctors. I jumped in with my opinions because I was concerned, and I care about her.

Sometimes people say mean, stupid shit, and you should call them on it. Sometimes, sometimes, they might say stupid shit out of love and concern. And sometimes, when you say stupid shit or lack the self awareness to realize you're exhibiting the very same behaviors that you deplore, it's useful to have a friend who loves you enough to point it out.

Post #44: Second verse, same as the first....

Drama cat says, "nooooooooooooooooooooo"

Fuckity fuck fuck fuck.

Guess who's going back on steroids?

Guess who also still has a cold, after a week and a half, and might need a chest x-ray and a z pack?

Guess who still gets to take the scary medicine AND the steroids after that cold is done? THIS GIRL.

High fives all around! Oh right.

(dramatic sigh).

So I guess there really have been signs all along. And like last time my colon freaked the fuck out, I ignored them until I couldn't. Until there was pain and fear. Until there was only once choice, a choice I felt "forced" to make even though I should have made it months ago. Same song, same station, different day.

I know the steroids will make me feel better, but I also know what tapering means, and how demoralizing it is to slowly lose the control the drug brings. I don't know about the scary drug, and how it will make me feel, but I do know that soon I will have not one but two powerful drugs coursing through my system. I know there will probably be side effects. I know that my pill count will climb again. I know I'll feel alone and powerless over what is happening to my body.

It seems almost quaint that a few days ago, I was idly rationalizing the decision to take this drug.

It seemed like a decision that was far off in the future, a decision that wouldn't effect me now, or so soon.

Someone asked me how I'd feel if I didn't take the medication and developed complications; I said I would be mad at myself. They asked how I'd feel if took the medication, and still developed complications: I said I would be mad at the universe.

I'm just mad.

And in my head, in a loop, I think please be ok, please be ok, please be ok. Every time I go to the bathroom and check for blood, or eat anything, or feel the familiar sweetness of Gatorade slip over my tongue. Please be ok.

Over and over again like a prayer.

Post #43: I took a break, buy my Crohn's didn't

This is what you get when you google "Crohn's flare." Assholes, like I could eat this shit even if my colon were not inflamed. Also, why does the frosting look like mashed potatoes? Ugh.

The title of this post should be sung to the tune of "I fought the law and the law won." Totally stuck in my head now.


Yeah, so, oops....haven't posted in a while. I was on vacation and even though I had internet access I didn't want to talk about my AAC. So sue me.

Before I left, I had a non-religious "come to Jesus" meeting with my gastro. Within 60 seconds of shaking his hand and starting to discuss my digestive business, I burst into tears, per usual. On the one hand, it's embarrassing that I can't make it through a single appointment without doing the ugly cry, but at this point I've kind of stopped trying to fight the FEELINGS. Whatever. It's not like he usually delivers good news and then we play with puppies the whole time. Shit is stressful.

After a lot of obsessing, denial, and stalling (3 month taper, anyone?), I decided to go on the meds I was hoping to avoid. It's time to give them a try. A few things became abundantly clear during my meeting.  My gastro broke it down: what are your goals for the next six months? I said I wanted to go back to work. He asked why I wasn't working (I took my leave of absence a while ago, and technically could have worked this quarter), and if it had anything to do with Crohn's symptoms. At first, I was like, no silly gastro! I'm taking a BREAK. I'm RELAXING and GETTING BACK TO NORMAL.

And then I realized: no I'm not. I'm doing exactly what I was doing before-piecing together an existence based around unpredictable symptoms and pretending that EVERYTHING IS FINE. But everything is not fine. Having 1-2 bad days a week, that kind of take me out of commission for a morning/day, is not fine.  I realized that in my current state, I couldn't go back to work with any degree of confidence. As my gastro said, so kindly, "I really don't think your symptoms are as under control as you think they are."

For a long time, during this period of tapering and should I/shouldn't I take this drug thinking, I assumed that I would get a black and white picture of the situation and would be able to make the right decision accordingly. Unfortunately, there were no fortune cookies with "TAKE THE FUCKING DRUGS ALREADY" fortunes, or long spaces of symptom free days where I picnicked in alpine meadows and communed with all that was natural and bright. It's been an in between, not that great, not always terrible, middle of the road kind of deal. I was so worried about making the right decision that I didn't make any decisions. I watched a great Crohn's round table thing online (wish I could find it again, would totally link to it) where a doctor said he tells his patients that the medicines they are taking  are "forever for now." New drug therapies are in development, symptoms can change, situations can change, and the drug you take today might not be the drug you take for the rest of your life.

I think that is what was holding me back: I had to be SO SURE about this decision because I would be on this drug for the rest of my life-but that's not necessarily true. And that flexibility is freeing. I like my gasto's approach: what are you goals, and how can we get you there? The goals will change, and the medicine might have to change as well. I've got to start somewhere.

Unfortunately, I have had a cold for the last week and a half, so I don't think I can start this drug right now. I'm going to call my gastro's nurse on Friday to check, but I'm still coughing up green shit so I think it's a no-go (and you thought this blog was just about POO).

I'll update soon-right now, it's time to watch the Olympics even though I know how it all turns out THANKS A LOT CNN. Things that are awesome: the hilarious England-themed jumps for the horses, sparkly spandex, hurdles. Diving and Olympic kayaking (?!). The fancy water polo baby caps. The super excited parents in the stands. AMERICAN BEACH VOLLEYBALL SHOWDOWN. I love this shit.

Post #42: Circular logic

These two Crohn's buddies are playing with a Frisbee, which is ROUND. Shape of the day!

I do love a theme, so today we're going to be talking about CIRCLES! Now, there are a lot of disgusting circles that go along with Crohn's that I will not be discussing, because really. No one wants to see pictures of that shit. However, I can list them: colonoscopy shots, ulcers, butt holes, toilet bowls, the ends of empty toilet paper tubes (SO MANY)......I mean, there's tmi and then TMI.

Let's start off with an easy circle: pills.

there is something very aesthetically pleasing about this pill color palette

Ok, some of those are ovals, but ovals and circles are like cousins, whatever. When I was first diagnosed, I was taking about 15 pills a day.....now I'm down to three (and they're not Crohn's related). However, if I were to add in the supplements that I should be taking for general health, not to mention AAC health, that would add at least 7-8 pills to the party.

Swallowing the actual pills isn't a problem; I can't seem to get over the mental hurdle of having another daily drug/supplement regimen. Now that I'm off the steroids, I kind of want to pretend this little interlude never happened, and return to a life of relative normalcy, which for me includes a day or two a week where my AAC pops up to say hi. However, I know that these supplements-prescribed by the asshole naturopath, blessed by my gastro-might be beneficial to the process, plus I have the freaking lab work to prove that I need to, I don't know, SUPPLEMENT my diet with some of these vitamins.

I've narrowed down the list to the absolute bare minimum: omega 3s, vitamin D, iron, and a multi vitamin. Besides having rancid fish burps, none of these pills are going to give me "moon face" or make my hair fall out, and yet I am more hesitant to take them then I was the steroids! I attribute this to 15% laziness, 30% distrust of vitamins in general (the "expensive pee" theorem), 40% avoidance of anything I view as "extra credit" and not mandatory, health wise, 10% concern that the pills may have gone rancid from sitting in my hot car for the last 4 months, and 5% general neuroses.

Let's rollllllllllllll on down (get it??) the road to our next circle:

I would totally push this.

 I get regular oil changes (sometimes), pay my library fines (eventually), hold doors open for strangers (always), and will tell a cashier that he has forgotten to ring up that expensive juice that I could have TOTALLY gotten for free (sad but true). However, I do have a bit of a wayward streak. Tell me I can't do something, and I immediately want to do it. I frequently have the urge to open doors that say "fire exit only" just to see what kind of noise they make, or knock down all of the standing cones around a construction site with my car. Basically, I want data. I want to know what happens if I do something I know I shouldn't-it's not the act of pushing the button that's interesting to me, but figuring out what happens next. I need to push boundaries so I know where they are.

This relates very directly to my health, and especially to this post-steroid period where I'm trying to figure out whether or not I should go on new medication (or if I need to). I know I should continue with my restricted diet, avoiding carbonation, white flour, white sugar, dairy, "skins" and high fiber stuff. It seems to be helping, so any normal person would think, great! I'll keep doing that. I should also take my supplements, meditate, and exercise. Non-surprising admission: I'm not doing any of that shit.

It's spring break (food wise) up in here, with me shoving all kinds of "forbidden" foods down my gullet. Last night, I went to a party with lots of good catered food, and while I did avoid the pasta and bean salads, and the tiramisu cake (assholes) I did eat white bread, some kind of stromboli thing (cheese, more bread), and an assload of sparking apple cider. For lunch, that say day, I had Mexican food-chips, salsa, guacamole, pumpkin seeds, lettuce, carrot strips, tortillas. Basically, I was running down all of the entries on the "fuck you" food list.

Today, I've had a gluten free cookie, a gluten filled blueberry scone, a slice of coconut bread.....the list continues. I keep eating this shit even when my stomach hurts. Before, this would send me into a panic, and it's still worrisome now, but I need to know what happens if I break my food commandments, the one thing I was clinging to amidst all of the colonic chaos.

This is a stupid thing to do. I shouldn't be stressing out my AAC, but I just don't know how to behave right now. I feel better, so I'm socializing more. Should I continue my restricted diet? If my bowel movements are pretty normal (had to sneak that in somewhere) do I keep delicious, delicious white bread off the menu? If I'm not feeling as tired, is it ok to tax myself physically by running around all day? What will happen if I eat dairy? Drink something fizzy? Skip my usual nap? Forget to drink as much water as I normally drink? I just. don't. know. So I do these things to find out, to push against my fears and find out what the reality is on the other side.

I can tell you this much: all of the fuck-you foods have made me feel run down, tired, and bloated, in a way that has nothing to do with my AAC. If I can pull my head out of my ass, maybe I'll recognize this fact as the data I've been looking for.

This post is long, so I'll just do one more:

These are the wheels on my whip. Hahaha, no they're not.

Ok, so finally: I'm going on a car trip. This scares the hell out of me. Company, eating out constantly, delicious vacation food temptations,  a complete change in my schedule, and no Trader Joe's (where the majority of my food comes from). We'll see how that goes.

Those are all the circles I can manage tonight, so it's call this part one. I am going to work this whole shapes theme for all it's worth.

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 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.