Post #32: My yoga pants are pretty tight....



Is there no option C??

Quick update: taper taper taper taper, super tired, taper taper taper.

Now you're all caught up.

In other news, I have lost my give-a-shit. I wear inappropriately tight yoga pants to the grocery store. I watch TV all day. I eat the same foods over and over because I'm too lazy to try new things. I don't wear makeup, even when I had what I am convinced was a small boil on the side of my face. I get irritated if I have to wear real pants. I have a somewhat relaxed attitude towards bathing (still mostly every day, it's not like I'm living in a pit of my own filth). I shaved my legs for the first time in a month yesterday, but only because I was bored.

I wouldn't call this depression. This is more like focused exhaustion. If I'm not going anywhere, and I'm tired, why should I wear real people clothes? I should save that energy for things like meal preparation and reading TMZ. I COULD moisturize, put on sunscreen, dab on coverup, set with powder.....or, I could use that energy to go to the grocery store with my giant boil shining like a beacon, and hope that my long bangs cover that mother. Again, I just don't give a shit.

And yet, I know I need to marshall up some give-a-shit, because I need to take care of my AAC. I need to make doctor's appointments and get blood work and get a bone scan and start taking my freaking vitamins and come up with a plan for when this taper is over (in about 2 weeks). There are a lot of out of town guests coming. I need to send out late birthday presents. I'm going on vacation for 2 weeks. Eventually, I have to go back to work.

But I am so tired.

In the past two days, I told two people I had Crohn's, and talked about it with a relative, and they all said the same thing: aren't you lucky that there are so many good treatments out there for Crohn's? One talked about her friend's son getting infusions every few weeks. Another, who is a pharmacist, said, "well, there are so many good tools on the market." A third told me about her friend who had Crohn's and had just had a baby, and how when she finally found the right medication she "got things under control."

If my give-a-shit was in full force, I probably would have been all uppity and annoyed about their cavalier attitude toward my colon-just take a pill, all will be well! But part of me wonders if all of this medication avoidance is a futile pursuit, and if I shouldn't just take the freaking pills.

If anyone has seen my give-a-shit, let me know-I need it to make some important decisions.

Post #31: Is there such a thing as colon yoga?

Annnnd push all thoughts about your ulcerated colon away......

All of the blogs/online articles/waiting room liteterature/books about Crohn's talk about stress relief. I think this is mostly because there aren't too many proactive things you can do about your Crohn's, so the literature throws us a bone: "Although it hasn't been proven effective in alleviating any of your symptoms, it hasn't been disproven either! So bust out the yoga! Meditate! Relax! It's not as though you have a chronic autoimmune.....oh right."

For a long time, when dealing with my anxiety, my body often clued me in to what I was feeling long before my brain caught on that something was amiss. My posture would change; my shoulders would ache from being clenched all day; I would find my hands curled into fists even though I felt calm. Back when I felt more attuned to my body, I would notice these postures, and recognize them for what they actually were: physical manifestations of emotional turmoil. Now, my body sends a lot of different signals all the time. It's hard to weed through the symptoms and pain and, think, aha! My body is tense. What is the source of my anxiety?

Of course, with the Crohn's, there are many obvious sources of anxiety, and scenarios that invoke worry and concern. Recently though, with the steroids still on board (yes, still tapering), I have been able to seperate, to some extent, some of the colon anxiety and some of the life anxiety. And as usual, the anxiety starts in my body.

Some examples: recently I had a super stressful hour long phone conversation. I realized I needed to divert my brain and blow off some steam, so I headed to my craft shack (dining room, whatever). I was sitting there, fiddling around, when I noticed that my ear was killing me. I thought, great, on top of all of this shit I now have a raging ear infection, and I'll have to take antibiotics, which will further piss off my AAC, SUPER AWESOME WHY IS THIS HAPPENING NOW. Scowling and muttering obscenties under my breath, I started to massage my ear when I realized......my jaw was clenched. And it had been since the conversation, an hour earlier. The pain from my jaw had travelled all the way up into my ear, and all the way down to my neck. As soon as I started to open my mouth and stretch my jaw, the pain went away.

When I fall asleep, I find that one of the most comfortable positions is to wrap my arms around myself under a few layers of blankets-and I stay in that position all night, holding on to myself, buried in sheets.

Since I started to notice these things, I also noticed that throughout the day my shoulders inch towards my ears, in a kind of perma-hunch, like an arthritic turtle trying to get back into his shell. It's been a constant new mantra: shoulders down, head straight. As I go to and from the bathroom: shoulders down, head straight. As I check email: shoulders down, head straight.

I think I might need to try some of this relaxation business.

Post #30: CONSISTENCY IS MINE! (on this blog)

In honor of my 30th post! You can eat it in my honor. Huzzah!

So, 30 posts! I am impressed with my own consistency here. And as you know, I'm a big fan of consistency.

As the taper continues, my bowel situation is not improving. I'm having more cramps and more pain. I knew the taper was about buying me time, and I feel like that time is running out. I've been putting off making the doctor's appointment (with my real doctor in a real hospital who doesn't tell me I'm going to explode if I sniff bakery dust) where I'll plan my next move.

Since I spent so much time talking about the horse I didn't pick (asshole naturopath! *shaking fist*), let me tell you a little about the one I did. Let me preface this description by stating that I must be kind of a nightmare patient. I am over-prepared, nosy, and suspicious. Now, some of these are commendable qualities, but I think there is probably a limit I exceed in terms of doing my own research and forming my own opinions. This is because when I am afraid or overwhelmed, I collect information. I'm not talking a quick google search (although I do that too), but more of a comprehensive medical journal literature review, with articles highlighted, collated, and organized by year. yikes.

Back to my horse of choice (HOC). I come to every appointment with a list of written questions (I am such a nerd). I like to go down the list, and then have a discussion about next steps and recommendations. I have never had a doctor reject/mock the list (to my face). Most doctors say that it's helpful and refer to it throughout the appointment. I prepare for my appointments because I know I have a limited amount of face time with my doctor, and I want to get all of my questions answered. I know that this is a positive/proactive way of dealing with the situation, but there is always a part of me who dreads being "that patient," the neurotic, difficult, overbearing know-it-all.

I've talked about it here before, but I think women are conditioned to respect medical authority figures in a way that is not always conducive to their personal health. This is a broad, sweeping generalization, but I know that I often feel like I'm overstepping my bounds if I ask too many questions, or disagree with a suggestion, or seek a second opinion. Intellectually, I know these are smart choices, but emotionally there is a fear of seeming like a crazy harpy. I do respect my doctors-and I know they did not go through medical school/residency to be second guessed by an overly confident wise ass with a penchant for googling. At the same time, I don't think it's wrong to ask about a less aggressive form of treatment, or see what all of my options are. At the end of the day, I'm the one who has to live with these choices, face the consequences, and deal with the side effects-so I'm the one who has to ask the questions, do the research, and find a doctor who can educate me about my options.

My horse of choice (HOC) is just such a doctor. He is smart, but more importantly he's......steady. That's an appropriate way to describe a horse, and a weird way to describe a doctor, I know. But he is calm and capable in a way that inspires confidence and trust. In our next appointment, when I am drug free, I am going to have more decisions to make. It will be difficult. But while I am nervous and cracking jokes to make myself feel better, I know that my HOC will quietly absorb the information I present, and give me his honest opinion about what to do next. I know that he will not be condescending, or try to intimidate me into choosing an option that doesn't feel right for me. And that, if nothing else, is comforting.

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

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

Two things to note:

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

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

Here's what I said:

Consistency, regularity, predictability.

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

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

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

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

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

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

Post #28: Crohn's is a GREEDY HIPPO

This guy obviously lives in his parent's basement, and maybe does bad things to cats.

Today was an ok day; better in the morning than in the evening, as is usually the case. I seem to have a new pattern: evacuation day, followed by a rest day. On evacuation days (this makes me think of an entire day spend doing fire drills, or stop/drop/rolling on the driveway) I am way more tired, like the act of creating normal poo completely drains all of my body's energy. I don't think this is a good sign, but at least there is something normal going on in colon town? Who knows.

Tonight, though, I'm feeling sick. My stomach hurts and has been doing some acrobatics after I eat. I'm nauseous and I think I may have a tiny fever. I can't seem to concentrate on any one thing-I feel like I've watched everything good on TV (horrors), reading seems like work, and I don't really want to learn about feelings in O the Oprah magazine. I should do laundry and pay bills and clean the kitchen, but I'm procrastinating here instead.

I thought the name of this blog, Angry Angry Colon, was a pretty clear allusion to the game above, but maybe I should explain. In my house, growing up, we never really had "fun" games or "fun" cereal or "fun" processed food. Sure, there was Monopoly, but there was no Mousetrap. There was NEVER Nintendo, and all of the cereals were high in fiber. My dad used to eat this one cereal that truly looked like bark, and we used to call it his "rabbit food." This is not to suggest that I had some Dickensian poorhouse style childhood (please sir, more high fiber gruel, sir!), but that my parents wanted everything to be educational, or at least not frivolous. If there is one word I would never use to describe my parents, it would be frivolous.

Naturally, "dumb" games and fake cheese snack products (Cheetos! because in nature, dairy products are NEON) were irresistible to me, and I used to love the game Hungry Hungry Hippos because it was quick, pointless, loud, and completely lacking in educational value. There's really no strategy involved-whoever has the greatest hand/eye coordination wins. Inevitably, one of the hippos would break from being vigorously pounded, and there were more white gumballs for the other hippos. It was the kind of game that was SUPER EXCITING for about 3 minutes.

I named this blog AAC because it kind of sounded like the game, and because the other alternative was more crass: before I was diagnosed, when I was undergoing all of the crazy testing and having symptoms and feeling like crap, my sister used to say I had MAD, or Mad Asshole Disease. It's kind of an all purpose diagnosis. I just didn't want the word asshole in the title of the blog, even though I talk a lot about it IN the blog. Asshole asshole asshole.

But AAC is really more applicable, because if you think about it, the ravening hippos are like the different parts of my life fighting for the limited amount of resources (energy, really) I have available to devote to them. One hippo is Crohn's, one is my social life, one is my personal life, and one is my work life. Right now, the kid playing the Crohn's hippo (stay with me here) has the most skills: that little bastard is hogging all the balls (ha). He's fast.

Hopefully there will be a time when the other hippos get a few more balls (ha) sent their way. When things balance out and every hippo has a fair shot at the prize. Unfortunately, right now, it feels like the other three hippos are muzzled.

While you ponder what board game best represents your life, I am going to go put an icepack on my face and try not to throw up.

Post #27: Behind the curtain (it's messy)



I don't know people who wear buttons, but this makes a point. Also, I distrust people with "hilarious" bumper stickers.

So apparently, Crohn's is considered one of them fancy "invisible" illnesses, like Lupus or Fibromyalgia (know right now that I am not comparing my Crohn's, or Crohn's in general, to either of these two diseases).

My AAC, thankfully, is on the inside (that would be gross otherwise). I was thinking about what I did today-a jaunt through the farmer's market, a trip to the thrift store, a stop at the grocery-and how to anyone walking by, I looked.....average.

What people didn't see, however, was the ruckus going on behind the scenes:

7:30: wake up. look at clock. try to muster enthusiasm for rising. still tired after full night's sleep. promise self waffles.
8:00: get up, stretch, yawn. beginning of cramps. contemplate laying in bed until have to go to the bathroom.
8:30: Checking email, eating waffles. monitoring colon. still tired.
9:00 first BM of the day. normal! would do small victory dance if not so exhausted.
10:00: must. not. take. nap. watch TV, try not to fall asleep.
11:00: must. not. take. nap. watch shows on DVR.
Noon: more rumblings down under. drink water. must. not. fall. asleep.
12:30: lunch. carefully consider the merits or 2 vs. 3 slices of spelt bread, as the difference could easily tip the scales between bowel regularity/explosion. decide to live on the wild side and have 3. remember to add protein, b/c without it I would be more tired. not that hungry or excited to eat but go through the motions.
1:00: craft time! weather is steamy, making me more tired. Try to focus on wire wrapping and fine motor skills. promise myself I just have to make ONE THING and then I can take a break.
2:30: made TWO things. feel dizzy and tired. having cramps? does this mean I have to stay in for the day? I made afternoon plans. consider crawling into bed and playing the sick card.
2:45: laying on carpet. feels good. beginning of cramps, but no action. must take shower. must not nap. promise myself that if I shower, I don't have to wear a real bra (sports bras 4ever).
2:47: still on the floor. very very tired.
2:50: I AM GOING TO SHOWER MOTHERFUCKERS.
2:55: In shower. hot water makes me tired. decide to go ahead with afternoon plans even though I want to get into bed and read (and take a nap).
3:15: all clean and ready to go. take orange juice in a to-go cup b/c the sugar will perk me up.
3:30: parked close to the market, near a bathroom. walking around farmer's market. I'm tired, don't really want to be here, but the distraction is nice. sample gluten free pumpkin bread. very bright. think jealous thoughts about the people lined up for salted caramel ice cream.
4: at thrift store. wandering the aisles. hard to keep focused. tired and thirsty. rumblings.
4:30: grocery store. decide to stay in car.
5: second BM of the day, also normal. small cheer.
5:05: MUST.NOT.TAKE.NAP
5:10: play online game. drink water. so drowsy.

This is an extremely abbreviated version of today, with the times all wrong, now that I look at it. It's tiring to even read it, much less live it. Everything takes two steps: the mental and the physical. The will to act and the act itself.

Like a stage production, my days can be separated by what happens on the stage and behind the scenes. On stage, I try to look normal, fit in. I try to listen to what people are telling me, to engage, to be funny. Like a professional, I try not to acknowledge the occasional sounds from behind the curtain. If the noises get too loud, I'll raise my voice so that my audience won't notice them.

Behind the scenes, chaos. An ongoing litany of concerns and rituals, worries and fears. What did I eat? Did I eat too much/too fast? Did I eat something new? What will happen? Was there enough protein? Was there too much fat? When was the last time I went to the bathroom? Where am I going? What am I doing? Where will the bathroom be? Is my cellphone charged? Do I have my Imodium just in case? How much time will I need to get ready? Should I take a nap? Should I make myself stay awake? Will I find something to eat at the restaurant?

And so on, etc.

It makes me think: what would happen if the curtain went up? What would happen if people could see the AAC beyond the facade? Would they still ask how I was feeling? Would they still say I "look great?" Would they ask, for the 10th time, why I am tired? Would they still be disappointed when I canceled or changed plans?

People have, in general, been understanding and kind. But I'm not sure they really have any idea about what's going on behind the scenes. And I'm not sure that I'd want them to have an all access pass to the show.

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

Does this exist?! Because it needs to exist.

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

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

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

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

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

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

Post #25: I am not an empty vessel



This picture comes up whenever I search for "Crohn's." Maybe Thom Yorke is telling my colon to be coooooool.

So. Day one of the taper has gone well. I am cautiously optimistic. This may, of course, change at any time. I did eat some (cooked! non cruciferous!) vegetables at dinner, along with a few bites of someone elses dairy-laden mashed potatoes. We'll see how my AAC feels about that is about 45 minutes to an hour.

It's time to finish the asshole naturopath story. Writing about it has been extremely useful for me. I used to think it was just an unpleasant footnote in this unfolding story, but it's become a cautionary tale and a reminder that no matter how tired, how depleted, how hopeless, I have to try to be a present and conscientious patient, and remember that I do have a say in my treatment.

I can walk out. I can say no. I can ask for a second (or third, or 54th) opinion.

I think that's the thing that stood out for me in re-reading the last post-I felt stuck in that moment, and voiceless.

After the semi-hygienic blood draw, I waited about a week to hear back from the asshole naturopath. He said the results would be back in 2-3 days, but again, I didn't want to be a bother (ugh). The weekend came, and the next week I called his receptionist, who was monumentally unhelpful. I left three messages asking the asshole naturopath to call me back, and let me know the results of the blood tests. Finally, I was told that he had seen my messages, and wanted me to schedule an appointment to discuss my results in person. I made an appointment for the next week and steeled myself for bad news.

When I finally got back to his office, he was in a jocular mood. I asked about my test results. "Well, I have bad news. You've only got another 70 or 80 years to live. Life is a terminal condition." Great......now, about those test results? He spent a minute or two looking through my chart and dicking around, until I finally snapped and said, "And the verdict is......."

He made a big show of circling numbers and drawing arrows around the page, but basically it came out that I don't have Celiac. He went into his spiel about the medical community's inability to diagnose the disease, and how some people don't become symptomatic for a certain amount of years, which would mean that their blood work would be "fine" and mask the underlying condition, etc.

He asked how the diet was going. Keep in mind that he had not pointed me in any dietary direction whatsoever, and I had done all the research myself. I told him that I had ordered/read the book (Breaking the Vicious Cycle, the progenitor of the SCD, or Specific Carbohydrate Diet), and didn't find enough compelling evidence to completely alter my diet in every way. The diet is meat/dairy heavy; I don't eat a lot of meat, and dairy has pissed off my AAC long before I was diagnosed with Crohn's. The steroids were working, and I didn't want to make my own yogurt using a heating pad (it's a SCD thing). He gave me the side eye, but at this point I was pissed off and said, "Well, I'm not going to lie and tell you I'm doing the diet if I'm not. Who would that help? Not me. Probably not you!" He made a big show of laughing at this, oh ha ha I appreciate your candor! What a wonderful rapport we have! Then he said, "At least cut out gluten."

So now we were bargaining? I told him that I would think about it. I still wanted to do more research, but going gluten free, though easier than the SCD, was a major commitment and I didn't know if it was necessary. I told him how the steroids had kicked in, and how I wanted to give them a chance to work to see how I felt.

The appointment had been decelerating at this point; I had rebuffed his dietary requirements, and cast doubt on his suggestions. He cut me off, and suggested that dietary modifications were preferable to staying on the steroids; "When you stay on the steroids and get diabetes, which you WILL, and osteoporosis, which you WILL...."

Oh I see.....if your "facts" don't work, and your speeches aren't getting through, then you'll help me onto the road of well being with a healthy dose of fear?

At this point, I had been on the steroids for a few weeks. I wasn't feeling so weak. I had more mental clarity. And I could see through his bluster and charisma and dirty finger nails and pseudo-spirituality. I agreed to take his prescribed vitamins, think about "the gluten thing" and check back in 6 weeks.

Three weeks prior, I had left his office feeling energized through the fog of my illness. This time, I left feeling angry and hollow, mad at myself for placing my trust in a bully, and mad at him for being an asshole.

I have not checked back, and he has not checked in.

A lot of doctors talk about being a "partner in health." This always reminds me of teaching, and the fact that there are teachers who expect students to passively accept knowledge (the "empty vessel" approach), and teachers who encourage students to actively question and engage with the knowledge they receive. It's the difference between a lecture and a discussion, a presentation and a dialogue. I am not an empty vessel, and I don't want to passively consume any of the information I receive from doctors, of whatever tradition. I know that I don't have all of the answers (far from it), and that I have much to learn about this disease, but I refuse to be bullied or dismissed or scorned by any so called "expert."

And that is how the asshole naturopath got his well deserved name.

Post #24: On choosing the right horse

How awesome would it be if I POOPED CUPCAKES!?

Tick tock tick tock.....guess what tomorrow is? The LAST TAPER. I am so exhausted at this point that I can't work up too much anxiety about it, but maybe after a nap or two I'll find the energy to get concerned.

I should probably be taking all of the supplements etc. to help with this fatigue, but instead of doing something useful I'll continue with the asshole naturopath story!

When last we left off, I was skipping out of the office feeling hopeful and renewed. Sure, this guy had just told me to cut out carbs completely and take some weird tree extracts, but at least there was a plan in place that was NATURAL. He arranged for me to come back the next day to do some blood tests, including a fancy genetic test for Celiac, which he was semi-convinced I had (according to him, 40% of Crohn's patients have Celiac, which is why the carb free diets often work so well for them. I have yet to find this statistic listed anywhere else).

In hindsight, during that first visit, there were several red flags that should have alerted me that no, Dorothy, you are not in Kansas anymore (Kansas being the realm of sane medical advice supported by peer-reviewed journals and double blind testing). If anyone utters any of the following phrases, it might be a good idea to step back and put down your Chai tea:

1.) What THEY don't tell you is....
2.) I wish THEY would do their research and not ignore these findings....
3.) I have to educate THEM about these things.....
4.) The testing THEY do is outdated and THEY ignore your symptoms until you have a full blown disease (ok, that last part might be true).....

I know there is some animosity between the medical doctors and the naturopaths, but any practitioner setting up an US vs. THEM dicothomy, no matter how much they preach mutual admiration and a spirit of cooperation, is courting you for THEIR team.

Some other red (or maybe yellow) flags:

1.) Mentioning over and over again the many conferences you've spoken at/attended/organized
2.) Mentioning over and over again the many doctors you collaborate with, and then not knowing a single one at the research hospital in town
3.) Saying that I should completely cut out carbs, but not telling me how (or why, exactly)

Actual conversation:
Me: So, you mean like the Specific Carbohydrate Diet?
Him: Sure, or any one like it. Just cut out all of that stuff.
Me: So you mean like no carbs or no gluten or what?
Him: Cut it all out.

The receptionist, when she was reading his recommendations and getting the supplements for me, actually said, did he give you any information about going these diets? When I said no, she looked kind of shocked, and said she would give me a printout with some internet resources. She never did.

Granted, I am remembering these conversations a few months after they happened, but I'm sure I'm forgetting (or repressing!) the most obnoxious quotes.

Let me reiterate that at this point, I was scared, newly diagnosed, and feeling like crap. I had take a leave of absence from work, and I was overwhelmed with information and statistics and opinions. I don't want to say that the asshole naturopath took advantage of this, only that I was susceptible to what he was saying because I was completely overloaded and looking for direction and guidance.

Annnnnnyway, I dragged my mom with me the next day for my blood draw. I used to be petrified when I had my blood drawn; I would get faint and anxious and nauseous and insist on laying down so I didn't pass out. At this point though, I just kind of throw my arm down on the table and point out my good vein. I didn't want her to hold my hand, I wanted her to meet him and judge the sale's pitch.

Sure enough, he succeeded in drawing her in. It was kind of fascinating to watch her drop her defenses, to begin to tell him about her work. He threw out statistics and facts and numbers, and made a series of ridiculously corny puns (one especially insensitive one involving Parkinson's disease, if I recall correctly). He didn't make any puns for me during my first appointment.

Now, the naturopaths I've been to draw blood themselves, in their offices. For some reason, I find this to be rather quaint and charming. It's certainly more personal than bundling you off to the lab, where you get a number (like a deli!) and wait to be called back to the antiseptic hallway of small curtained rooms where the phlebotomists live. I should mention at this point that I noticed, in my first appointment, that this naturopath had dirty nails. Not long, jagged talons encrusted in filth, but visible dirt underneath his nails. When it came time to draw my blood, he pulled all of the equipment out of the cabinet and put it on the counter, and then advanced to my arm and started poking around. I don't think he washed his hands. I'm pretty sure there was an alcohol swab involved, but I know this: he did not wear gloves. I know I have semi-difficult veins-when I asked why he wasn't wearing gloves, he said gloves made it too hard to feel them, and expressly said, "It's more of a risk to me than it is for you, and it's a risk I'm willing to take." Writing about it now makes me want to vomit.

I still let him do it. My mom, who is not a quiet or retiring woman, let him do it. I write about this for a number of reasons. First, I think women, no matter how strong or confident, are often cowed by male doctors. I think we've been trained to submit. I think that sometimes, especially when we are sick or scared, we let ourselves be bullied and do not advocate for the things we know to be right for ourselves (or safe!). Not all male doctors are like this, and certainly I've been to a few female doctors who were just as aggressive. But sitting in that room, I let him take my blood in a way that I didn't feel was safe. I did it because I didn't want to seem whiny, or paranoid, or difficult. I did it because I was tired of fighting against all of the things that were happening in, and to, my body. I did it because I thought he had all the answers.

Second, I let him do it because I was tired of searching for someone to take the reins. As I mentioned before, I had been doctor shopping, and I'd seen a number of (male and female) gastroenterologists. The last one I'd seen, a few days before meeting the asshole naturopath, told me that he thought it was great to interview a number of doctors, because I needed to find someone I was comfortable with, but that ultimately I needed to "choose a horse," because I had important treatment decisions to make. When I saw the asshole naturopath, I thought he might be my horse, that he might be able to make the tough decisions for me. Here's the thing that I learned: you can pick a horse, but that doesn't absolve you of taking responsibility for your actions and being the steward of your body. You can trust a doctor, naturopath or medical, but you still must make decisions that feel right for you. Trust does not, and should not, equal compliance without questioning.

At those first two appointments, I did not question. I did not stand up for myself. At the third appointment, where the asshole naturopath earned his appellation, I did both, and the results were thoroughly illuminating.

Post #23: Tree fungus on Tuesdays

It's true. However, that little kid is FREAKING ME OUT. Also, do apples really "poop"? You're confusing me book.

Tick tock, tick tock....the taper approaches. I'm at that point again where things are (relatively) stable and then I have to go and fuck them up. I seem to be at that point a lot.

I think the time has come to discuss, in detail, my asshole naturopath, as seeing him has had bearing on my whole Crohn's process thus far. I've alluded to his assholery (assholishness?), but that doesn't paint the whole picture. I'm sure that many people who are given a diagnosis with lifelong implications (or even short term ones) seek second opinions, or alternative therapies. Facing the prospect of a few doctors who told me that diet doesn't matter (which I still don't fully believe) and offered instead an arsenal of scary, (potentially!) cancer causing drugs, I did what seemed like the logical next step: ask a hippie.

Naturopaths aren't by definition hippies, but this one is. I had been seeing a delightful naturopath who referred me to the asshole naturopath on the basis that he was THE GUY for Crohn's in my area. I was warned that he could be difficult to work with, and that he was very impressed with himself. I made an appointment anyway, because I was curious about what he had to say and frankly because I wanted to see how much of an asshole he really was. Mainly, though, I wanted to hear a voice from a different medical viewpoint tell me that things were going to be fine, maybe pat my hand, and tell me to lick a special kind of fungus on Tuesdays in the moonlight to calm my angry colon (naturopaths aren't really like that-I just like to be DRAMATIC).

After waiting the obligatory 35 minutes in the waiting room (a musty, dusty "parlor" area of an old house where his practice was located, complete with copies of his books and lots of hanging plants), I was shown into his office. Asshole naturopath was short, compact, and had a direct and disconcerting gaze. I launched into my spiel, gave a complete family history, and promptly started to cry. It was early in the steroid and Pentasa days, and I was still living on white bread, Gatorade, and baked lays. I was scared and I wanted someone to tell me how to live this new life.

Asshole naturopath, for all of his faults, is an astute and accurate reader or human emotions. It might be a parlor trick, this ability to "connect" so quickly so virtual strangers, but it is an effective and seductive skill. Maybe I was just in a vulnerable place, and I was more impressed with his observations than I normally would be, but after listening to my story, he told me what kind of  person I was. He discussed how I was stubborn and oppositional and scared of change and clinging to any semblance of control over my life and my symptoms. He pulled out a book and read my astrological chart, which confirmed the same. As I sat in his office and cried, he told me that illness is a journey, and every illness is meant to teach us something. What was I supposed to learn through this new diagnosis? How would my life change, and how would I change to accommodate this new illness? He thought that my lesson was about control, about learning to embrace acceptance. He told me that I would be a better person by going through this process.

He told me many other things , but during that initial appointment I was hooked. He was telling me exactly what I wanted to hear: that there was a higher purpose for being diagnosed with this disease, maybe even a reason , and that positive things like self discovery and acceptance and strength could come from the experience. He had a plan, one that incorporated both drugs and natural supplements. He wanted me to have super special naturopathic allergy testing and cut out gluten. He was so confident and so sure of himself that I was completely willing to trust his edicts. During that first visit, which lasted over two hours, I put my battered self into his hands. He was nothing but lovely, even when I called bullshit on some of his theories (I am oppositional, after all!).

I remember leaving that appointment feeling more hopeful than I had at any point in the diagnostic process, happy to have someone see "the whole picture" and guide me toward health. I should point out that at this point I was still doctor shopping for my new gastro, and intended to have both a traditional and naturopath physician working on my case simultaneously (and in perfect harmony, hahaha). I had had a lot of meetings with a lot of doctors delivering a lot of not so great news, so asshole naturopath was like a breath of fresh air.

Eventually, however, he did become an asshole. That is for another post, but when I first met him, I was fully invested in the idea that maybe his profession had something equally valuable to offer me in treating my Crohn's. There are still many of his ideas that I agree with, including the fact that traditional medicine only treats full blown diseases instead of focusing on preventative care. And to this day, I've been "cutting out the white stuff," which is a mash-up of his advice, stuff I've read on the internet, trial and error, and a bunch of books about the anti-inflammatory lifestyle.

I guess my whole point in recounting this story is that when you are at a place of desperation, you can sometimes fall sway to the questionable advice of strong and charismatic men. People who say what you want to hear, when the rational part of your mind is subsumed by an emotional and spiritual craving for safety and comfort. I am still surprised by how thoroughly he read me on that first visit, and how quickly I felt connected to him and invested in his advice.

Eventually, I changed my mind, but I still think about him sometimes, and about the "journey" I am experiencing.

Post #22: Swimming in jello

Oh lady lion, I so understand the feeling. I would join you on that stump if you wouldn't eat my face off.

This is what you get when you google "auto-immune memes." Not what I was looking for, but so very appropriate. Good job internet.

So far, beyond a few crying jags over stupid shit like lifetime movies and sad health documentaries, I haven't really experienced the moodiness or emotional changes that can come with steroids. Now maybe I'm getting all of it in one week? I just feel weird, and strangely passive, and indecisive and kind of vaguely anxious and.....weird. I'm sure that clears up my emotional state. I taper again next week (sigh) so maybe that will help?

I don't think I've talked about it here, but there's this scene from an old school Tom and Jerry cartoon where they find some magic beans, climb the beanstalk (naturally), and end up on the giant's dinner table. They are small and the food is HUGE. Antics ensue, and somehow in the chase the mouse ends up in a giant jello mold, kind of suspended in the dessert. He swims through it and when he looks out, the world is orange tinted and distorted (jiggly, I guess? It is jello).

I am in the jello. Everything feels sluggish and slow and harder than it should be. I think this is due partly to sleep issues, partly to my AAC making me feel run down, and maybe a little because of the drugs. It's so hard to delineate-is this IBS or Crohn's? Steroids or Anxiety? Feelings or Exhaustion?

Anyway. Yesterday, even though I kind of knew it wasn't a good idea, I went blonde. Like, super blonde. And now I'm going back and forth about whether I like it not. It's hard to say. But the fact that I willingly let someone strip the color from my hair even though I was unsure if I wanted it to happen in the first place is kind of telling about my life right now. I just wanted to see what it would look like, and I didn't really care that much, and at least it would be different, and what else do I have going on? It's easier to let someone else make the decisions every once in a while, even if you end up disliking the results.

Plus, it's kind of the only drastic outward change (short of wearing a sparkly tube top and busting out of some ho-tastic short shorts) that I can make right now. I can't get anything pierced. I can't get a tattoo. Even going to get a pedicure is like a code yellow situation (germs! must. protect. immune. system). So naturally the best thing to do is go for a Debbie Harry/Betsy Johnson color to match my pretty sedate fancy soccer mom hairdo. EXCELLENT IDEA.

Sigh. I think I need something else besides hair adventures and doctor's appointments to fill in my week.

Post #21: My colon is a WILD HORSE ON THE RANGE

Mostly I wish I don't have to poop again in the next 10 minutes. I should set my sights higher. WORLD PEACE!

Today is kind of a hard day, the anniversary of a death of a family member. It's been a long time, but sometimes the wound still feel fresh.

But let's talk about my colon! Because that's what this blog is all about, no? Today my colon is displeased with.....something. I'm tired and still fighting off this cold (I guess that's what happens when your immune system is busy ATTACKING YOUR HEALTHY TISSUE). I'm going to taper again next week, and I'm stressed out about that. I have the sneaking suspicion that following the last taper my doctor will want another colonoscopy (it's been 6 months since the first one that started this whole Crohn's party). I'm still paying off the festival of invasive testing that happened in Jan/Feb. I start work again in September, so I feel like there's a timeline to this whole process, which is pressure I don't need.

I read through the paperwork that the insurance company sent me, and the thing they want me to enroll in is called the "Rare Disease Condition Management Program." I didn't think Crohn's was that rare, but whatever. Apparently, they assign you a special nurse who coordinates with your doctor to help you "manage" your super special disease. I don't feel like I need another voice (especially one who is tied to my insurance company) involved in my medical decision making process, so I think I will decline. There is something about the term "management" that pisses me off (prepare for a rant!). Management is what you do when you are a mid-level executive at a company that produces ball point pens. It is not something you do for my colon, which like a wild horse, is a wily and unpredictable creature. You can't shove my horse colon in a simple box and stamp it "managed." I feel like that metaphor went awry at some point, but I think you get the picture.

I'll ask my doctor about it when I go in for my next visit.

In other news, people keep asking me to babysit things for them (people, houses, dogs, small rodents) while they go on vacation. This is depressing because they assume, correctly, that I will be around to watch their business while they galavant about the country (ok, visiting Michigan is not that exciting, but it's still different than HERE). I think I might have another gig lined up for next weekend. sigh.

I am going to run to the bathroom (again) and get ready for a hair appointment. I'm going to change my hair color in an attempt to perk myself up. This week my AAC (and my cold, and some other random medical shizz) has kind of steamrolled me and pushed out all of my energy and give-a-shit. Maybe a new hair color will give me back some much needed attitude.

Post #20!

I don't know about the calm part.....

My 20th post! I am being so consistent with this whole blog thing. And, if you've been following along with the rest of the class, consistency is what I need.

I've had trouble finding my rhythm this week. I had two non-Crohn's related doctor's appointments, with their attending stresses; to sum it up, I basically got a nose pap smear, but with slightly less scraping. FUN TIMES. Also, and this is a random tangent, but I was at a dinner party last week where the subject (after a lot of imported plantain gin) turned to male/female parking habits and the male need to "angle in" (or back up into) a parking spot to show off their parking prowess. Being a mediocre parker in the best of circumstances, I've never felt the need to increase my likelihood of hitting other vehicles or ramming my car into random obstacles I can't see in the rear view so that my getaway is FIVE SECONDS FASTER, but at this particular medical facility I spent TEN MINUTES waiting for various males to back their over sized SUV's (and in one case, a seriously gigantic caddy) into tiny compact spots while the rest of us waiting to pass and avail ourselves of the DOZENS of available spots around the corner. Ugh.

Moving on, back to my discombobulated week. What really gets me is the eating-I'll try to stick to a boring, healthy regimen, and then I'll get lulled into a false sense of security and, oh, eat an entire basket of chips (with salsa!) at the mall. That day, I'll feel great! My colon will be pleased! Two days later and it all falls to pieces and I spend the day on the toilet. I just don't get it.
I'm still getting over the cold/flu I had last week, and in combination with the colon drama I feel tired and drained. And bloated. And a little nauseous. And cranky.

Today I got something in the mail from my insurance company that scares the crap out of me (like I needed help in that department). I haven't read the particulars, but basically the note was like, hey! we noticed you had Crohn's! Why not enroll in our new Chronic Condition All Stars Program?! We have special nurses just for you sickies! We'll coordinate with your doctor! It will be awesome! Now fill out these 10 forms and let's take a moonlit stroll down the beach *kiss*

Now, far be it from me to suggest that the insurance company has anything less than altruistic motives in grouping the chronically ill into a group and monitoring (micro-monitoring? Did I just make up a word?) their progress, but the whole thing seems creepy and intrusive. Besides the depressing fact that Crohn's is grouped with other diseases like diabetes, Alzheimer's, and Parkinson's, this whole venture, with its shiny informative brochures, seems suspicious. It seems like a way to focus in on these specific diseases and gather information, information that could later be used to deny coverage for specific procedures or validate insurance adjuster interference in the treatment process. I don't know, as I said I haven't read the fine print, but a lot of the questions are super, super specific:

1.) In the last six months, has your condition improved? worsened? Has your colon fallen out?
2.) Rate your overall health: excellent, poor, superman, average

Really, insurance company? Do you really need to be all up in my business? If you really wanted to know, couldn't you just look back through my claims? Do I have to make it easier for you to categorize my health for your unknown purposes?!

Suspicious.

I don't think I will be participating in this little pilot program.

I know that they know that I have Crohn's-it's not something I can keep secret. But being hit over the head with this knowledge was disconcerting. After I read the letter, I curled up in bed with a book, feeling sick, and tried to forget for a while.

Post #19: Waiting Room Roulette

I have never been in a waiting room like this-the seating arrangement encourages actual INTERACTION. Horrors!

Today I went to my (non-Crohn's) doctor for an appointment, and as usual, I was early. I know I don't have to actually arrive 15 minutes early, but like the good little lab rat that I am my ass was in the waiting room 20 minutes ahead of time. My doctor was running late (of course) and so I was sitting there for about an hour.

Waiting in a waiting room requires offense, defense, and a proven strategy honed over the course of dozens of doctor's visits. The first thing you need to consider is seating choice. Occasionally, there will only be one or two open seats, but in general you have your pick, and thus need to quickly scan the assembled crowd for some very specific qualities that will
determine your decision. This is a learned skill.

The goal of successful waiting room seating is to corner the least populated area and hold onto your turf by making direct eye contact and/or spreading out your belongings onto the adjoining seat (just one seat, not two-I'm only a partial asshole). A waiting room is a goldmine of filth and illness, and while you can't hermetically seal yourself into some awesome futuristic waiting pod (that would be AWESOME) you can take some steps to prevent the most aggressive transmission of germs.

First you need to visually divide the waiters into three categories: visibly sick, people with kids, and chaperones. Sitting next to a chaperone is a good option. These chaperones are easy to spot, as they are equipped with an e-reader, giant bag of knitting, or sudoku book. They might even be sleeping. You do not sleep in a waiting room if you are waiting for an actual appointment. While you can't take a complete medical history, the chaperone is probably less ill than that person they are accompanying to the doctor-thus, acceptable seatmate material.

It goes without saying that someone who is visibly sick should be avoided. Why put yourself directly in the path of all of those pathogens? Today, there was a girl who actually put on one of the face masks the hospital so optimistically puts in the waiting room, in one of those freestanding stations next to what I am convinced is the least sanitary hand sanitizer ever. Her skin had that moist sheen that indicates a fever, and she was coughing up a lung behind her yellow mask, covering her mouth each time out of habit. Obviously, I did not share her couch. The visibly sick are often not so conscientious: Rizzo (I give nicknames names to all of the patients, since I am the only person under 50 without a smart phone so I can't pass the time playing fruit ninja), a short woman in a leather jacket and sneer, had a lusty chest cold and kept wiping her nose on the back of her hand and then running her fingers through her hair, wiping and touching, spreading her business onto the seat, clipboard, pen, and general surrounding area. AVOID.

People with kids: also not optimum seat mates. Kids are germ factories, and often curious little germ factories with boundary issues. AVOID.

After you have broadly grouped the waiters, you can get down to specifics:
-Waiters with casts, slings, and other orthopedic gear are generally good bets.
-People who make eye contact and smile (at everyone) are bored and looking to commiserate. AVOID.
-People who are eating (in a waiting room!) gross me out. AVOID. Same goes for hard candy suckers and loud throat clearers.
-People who are loud cell phone talkers in shared public spaces should be neutered. Just saying.
-Couples are a safer bet than singles, as there is likely one chaperon to provide a seating buffer.
-Sitting by a fish tank/water fountain/TV/magazine rack is never the best idea, because it attracts visitors who may linger and pollute the area.
-Try to choose a chair instead of a couch, as you will be less likely to have to share your space.

Today I commandeered a nice corner chair and scoped out the competition. Rizzo and Typhoid were across the room. To my left: Home Hair Color (that dark purple you get when you try to dye your hair black at home) tapping away on her iPhone (kate spade cover!). To my right: Volvo SUV, a suburban chaperone mom in danskos and a shirt I saw last week at Nordstrom Rack. Later, we were joined by the Professor (mid 50's, absentminded, fancy German walking shoes and a black backpack with a "I am the 99%" tag). Observing the proper etiquette, there were at least two chairs between each of us.

Waiting rooms also have racial, socioeconomic, and generational dividing lines, but that is a subject for another post. There is also a kind of perverse popularity contest, as you can watch people decide to sit by you or far away-as much as you've been scanning and plotting, other people are assessing your potential sickness and seatmate suitability. Like attracts like; we tend to feel safer near people who look like us (and by extension, presumably share a certain kind of lifestyle). That is why I was in one corner with Home Hair Color, Volvo SUV, and The Professor, while Rizzo, Dawson's Creek (a college age couple), and Spike (a guy with a lot of facial piercings and a camo skull t-shirt and hat) sat in the seating area opposite.

It's not a particularly pleasant activity, this waiting, but it helps to exert some control over the situation by trying to avoid the people most likely to infect or talk to you. Making up names and back stories at least makes the time more enjoyable. I'm completely convinced that if I sat in a waiting room for a week, I could write a credible soap opera that would garner decent daytime ratings. In the end, though, everyone is just waiting to be called, the great equalizer of the whole equation.

#18: In which I fall off the white bread wagon

This is what you get when you google "angry bread." Although if I went to that factory, I think my mouth would be so full of enriched white bread goodness I would forget to be angry. It has the word WONDER in it, how can you be mad??

I am now halfway through my taper (cue celebratory music). These past few weeks have been filled with spelt, gluten free waffles, and cucumbers (skin removed). Did you know that when you peel cucumbers, the wax that they coat the vegetables with comes off in tiny curls? I find that to be both disgusting and fascinating.

I can't really make any sweeping generalizations about the state of my AAC at this point-I think the next taper will be the most telling, in terms of my future medical plans. What I can tell you is that for two weeks I cut myself off from delicious, delicious white bread and sugar, and when I hopped off the wagon for a brief second, I came thisclose to actually snorting a roll in a restaurant.

I'm sorry, white bread is just better. I had the best of intentions today-I planned to go to a Greek restaurant, where I could easily order meat and vegetables, but the place was empty and it's always creepy to be the only people there. I just imagine the server taking our order and poking the sleeping cook, like, "Eugene! We have customers!" while the cook rouses himself out of a pool of saliva on the counter top, scratches his ass, and wanders into the walk-in to find some chicken that looks "fresh." I know that high turnover doesn't guarantee freshness or food safety or a non-ass scratching chef, but we decided to go to a different place down the road that happens to have DELICIOUS bread.

I had good intentions, I really did. And in the scheme of the world, consuming some processed, bleached flour is not going to derail the colon train. The warm bread that was brought to the table feels different in your mouth than whole wheat bread (no stupid seeds or berries or sunflower seed shells-I'm looking at you Trader Joe's bread). It is softer, silky, lighter. The aroma is light and sweet, without the more strident tang of spelt bread. This is not a bread that haughtily proclaims its healthiness, or tastes aggressively like fiber-this bread envelops you in its quiet, yeasty goodness. This is the way bread is supposed to taste. I maybe ate 5 rolls.

All of this is well and good, and I felt fine, but for the first time in two weeks I CRAVED sugar. Not a demure, gee, a sugar cookie sure would be swell right now! kind of craving. More like, if someone doesn't feed me sugar in the next ten minutes, I may have to drive to the grocery store and take the freezer section hostage. Coincidence? I think not. Somewhere, my asshole naturopath is cackling and dancing around a fire coated in agave syrup, garbanzo bean flour, and virgin coconut oil, burning a bag of white flour and mainlining probiotics, and I might have to strip down and join the party.

I maybe ate an entire pint of vegan "Oreo" ice cream in under 15 minutes. I do not regret it. I am also going to send my spelt bread a nicely written apology letter and see if we can't see each other exclusively again, starting tomorrow.