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 #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 #14: Colon Firth

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

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

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

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

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

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

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

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