Post #83: My brows need IRON

dun dun DUN....(cue soap opera big secret reveal music)

I was watching this episode of Will and Grace a few days ago, and for some reason I can't remember Jack lost an eyebrow, was wearing an eye patch, and then had Grace draw on this stunningly natural sharpie version. Haha, oh Jack.

In related news, I went a litttttle overboard on the plucking (again). It's not as pathetic as last time-one eyebrow isn't cocked significantly higher than the last one-but they still look pretty anemic. I am putting myself on a strict no-plucking diet for the rest of the month, which is a shame because tweezing is my happy place.

Someone was telling me that when they were overwhelmed, they piled on the eyeliner-my eyebrows themselves are my stress barometer. And I'm feeling stressed out. Everything (knock on wood a few times) is holding relatively steady-I have one more week of steroids left, and then I will be totally off them. I exercise 5 days a week. I eat out. I'm finally taking my freaking vitamins. And yet, like the understated, elegant beauty that is Jack, I am giving a huge SUPER THIN EYEBROW RAISE to the whole situation.

I just feel edgy and....concerned. Wary. There is so much riding on this last bit of tapering, and then my body's reaction to just being on the one other drug. I find myself craving late night cookie binges and bad TV. I pulled my quilt out of the dryer today and wrapped it around myself and just stood still, in the middle of the kitchen, because I felt so happy and warm and safe. I crave comfort, and sometimes old habits are the most comfortable of all. Cue eyebrow tweezing, stress eating, magazine reading, and Internet shopping. Wheeeeee!

What is especially ironic is that at a time when I am worrying about the hair on my head, I gladly removed a lot of the hair above my eyes. Everyday my hair looks a little more deflated (to my eyes, anyway). It still comes out in the shower and when I comb my hands through my hair after. I keep waiting for the tipping point, the point at which my scalp becomes visible beneath my hair, or I develop a bald spot, or whole clumps start falling out. Part of me just wants to shave it off and be done with it, but that's not right.

So, I keep going. I keep doing what I'm doing until I have my colonoscopy, so I can make more informed decisions. I'll keep sweating with the oldies, and try to resist the siren call of the sugary treats in the freezer. I'll just keep waiting. I'm pretty good at waiting. I've had a lot of practice.

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 #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 #11: Today, Crohn's is a pain in my side

Yup, that's about right.

Ok, this is funny only if you've been to a doctor's office recently and seen the pain scale they have there. It's for kids, which makes it extra sad I guess, but they have a scale from a smiley face to basically a crying Mr. Yuck sticker. I think this adult version more thoroughly expresses the pain situation, which is kind of what I'm dealing with. I'm at a 3 now-kind of a lingering ache, like an organ hangover.

However, last night at around 2am, I was a 5/6. Whenever pain wakes you up in the middle of the night, it's never a good sign. I did go to TJ's yesterday, and I MAY have become overexcited about having things to eat that actually have flavor and MAYBE I overdid it with the avocado hummus but STILL. Nothing crazy, nothing huge. I didn't decide that things were super stable and book it to Old Country Buffet and eat my body weight in fried chicken and shitty pizza and shrimp scampi (I've never actually been to Old Country Buffet, but I'm pretty sure they have those things).

All of that night time pain translated into a super fun morning of cramping and colon explosions. My side is still pretty tender. I ate food today, so I'm kind of dreading tomorrow morning. This week was about starting the taper, and tomorrow, I add in all the shizz the asshole naturopath gave me-fish oil and multivitamins and vitamin D and iron (all approved by my actual doctor, natch). All told I think this adds 10 new pills to my regimen. I'm not sure if any of this shit will help, but now seems like as good a time as any to throw more stuff on the pile. I'm hoping I don't notice a difference, although I'm kind of worried about the fish oil pills. I'm nauseous already, and the last thing I need coming up the pipeline is rancid salmon juice. However, the bottle says these ones are "lemon flavored," so maybe they'll just taste like Lysol instead. Adventures!