Warning: rant ahead, or a peek into the mind of a food-anxious freak

What follows is an account of one day in my battle with disordered eating. I have fought this problem since before I was old enough to drive a car. It is one of the reasons I finally sought professional counseling through a dietitian this summer, though I didn't know it at the time.

In the months since my work began with the dietitian, I've made many gains. But under the right (wrong?) circumstances -- such as the recent weeks of stress -- backsliding happens. I'm writing about that for the first time here, now, because it's better than keeping silent.

I should have paid attention to the sinking feeling this morning.

It's the kind you get when you haven't eaten in a few hours and your blood sugar dips. Your stomach is growly and your head gets thick and it is all you can do to remember where you were supposed to go next -- much less what you were supposed to do once you got there -- on that list of errands you'd set for yourself.

It was another early morning. And you didn't count on things taking so long. Take a snack, your brain was saying as you headed for the car, wishing you could just stay home. But you were tired and you didn't want to have to have that snack. In the fuzzy logic -- or plain mule-headedness -- of on-the-way-out-the-door thought, you told yourself a doctor's appointment, a haircut, and an in-and-out trip to the grocery store should not take more than three hours. You'll be home right on time for your next meal,* you said. Screw the snack. It's extra calories you don't need. You've lost a little weight in the last month -- don't you want to keep things the way they are?

So you get through your appointment. When you get to the salon -- the bargain-basement walk-in one that also happened to put out a coupon that you needed to use this week if you wanted the additional savings -- you find two other people ahead of you in line. Okay, no problem. You flip through the look books since you haven't had a trim in six months -- better find a picture of what you're supposed to look like so whoever on the rotating staff is assigned to you will do the job right.

And you wait.

And you wait.

And you wait some more. No reason things are slow except that there are only two people working. By the time the woman with the scissors is ready for you, you're regretting that snack you told your brain to forget. The stylist does a good job, a thorough one. So thorough you're wondering if she's cutting each hair individually. And this is just a trim? The morning you thought you'd still have, after finishing these errands, slowly begins to slide out of reach. But, oh good, the stylist is finally done.

This, if you weren't going to take that snack, is where you should have gone home right away instead of trying to stick things out.

After leaving the salon, you head over to the grocery store. What did you need? It takes effort to remember, even though it's just two items. One of them -- salad greens -- wouldn't even be necessary if the greens you bought last Thursday, with an expiration date of November 10th, hadn't already decomposed by the 7th. But you need those greens. What the hell else are you supposed to fill up on if bread and crackers and cereal and all the rest of the food you've ever loved can only be eaten in portions that would make a mouse cry?**

At last, you do get home. You make that salad -- a quarter of an apple, an ounce of goat cheese, not quite a tablespoon of olive oil and balsamic vinegar, tossed with the greens -- and slap some turkey with mustard on low-carb bread. It's a good lunch, a filling one. But you've eaten the same damn lunch for five days straight*** because you've been on autopilot with everything else going on. And now you want what you know you can't have: anything with more than 15 grams of carbs per serving. In any quantity you like.

You wait out the cravings. You're supposed to get on with the rest of the day anyway -- so the morning's gone, and you haven't showered yet, and the workout that you've been hating lately but that you cling to because it means your body still functions and your weight is still under your control needs to be done. But then the phone rings. And you're so lonely that you will totally blow another two hours talking when you know you'll be mad at yourself for shoving off more of the afternoon. Your resistance is waning.

When you hang up, you head for the kitchen. You need fuel for the workout, or that sinking feeling will get you halfway through. So you allow yourself some carbs.

But you've got no willpower left. Between the sugar lows and the lost morning and the loneliness and the sheer sense of defiance you have against all that the universe has thrown at you this year and the last with no rhyme or reason, you've HAD it. Before you can stop yourself, you've inhaled enough from the pantry to horrify your (former) endocrinologist and alarm your dietitian, the latter of whom you should call and 'fess up to right now so she can help you.

And I will.

Tomorrow.

* Eating meals at regular intervals is helpful in maintaining optimal blood-sugar levels and preventing binges.

** Obviously, this is a bit hyperbolic, but when your brain has no fuel, it doesn't process thought very logically or reasonably.

*** Creating variety, even only slightly, in what you eat can be helpful in preventing boredom, which can otherwise trigger binges.

And then things got ugly

I've been waiting.

At first it was just waiting for an appointment with a new doctor -- an internist to start with; she comes highly recommended. She works within a well-reputed medical center I've been referred to in Seattle, one whose philosophy emphasizes continuity of care: a single system, linking all of its specialists. Everybody has access to your records, your history. No faxing things to separate people, no need to dig channels of communication. They're already in place. But you have to have a primary care physician within the organization -- he or she acts as your point person -- before you can arrange to see anyone else (like, say, an endocrinologist).

So my appointment, which I made the day before my last post, is this Wednesday.

The same day of my last post, within the hour I hit publish, my body threw a hissy fit. I'll spare you a list of the symptoms, but suffice it to say, they weren't something to ignore.

We weren't sure of the cause, but the first suspect was that kidney stone. Its initial presentation was odd, which I knew, but it turns out the urologist's report hems and haws about whether it was ever even a stone. If it was, it's up and done something unkind. If it wasn't, then something else is going on and we need to figure out what that is.

In the interim between the Friday I got sick and this Wednesday (not quite three weeks), we've done some stopgap investigating. As much as I didn't want to, we went to an ER on the first Saturday (on the advice of the nursing consult service D's company provides to its employees) to make sure nothing imminently life-threatening was happening. After that, we were advised to follow up with a urologist. Of course, the earliest appointment I could get was after the first appointment with the new internist (this is how new-patient scheduling sometimes goes). I was still feeling off, so my remaining option while waiting was to go back to my current doctors.

At some point in April, when the endocrine guy was beginning to run out of ideas, he referred me to a rheumatologist (suspecting something autoimmune). "He's a very good diagnostician," he told me. So I saw that person in June (see what I mean about new-patient scheduling?) but in the end received no new answers after one more round of tests.

Given the new symptoms from September, I figured it might be worth going back to him. Fortunately, he had an opening the Tuesday after I got sick; still no answers, but he repeated his tests.

The Thursday of that week, we left for D's brother's wedding weekend, during which my symptoms got worse. Tack on one more ER visit.

Then we came home. Symptoms even worse. Decided to forgo the ER visit against most natural instincts, sensing from our track record that we wouldn't get answers. The rheumatologist's tests came back a few days ago with nothing new either. And now, we're here.

I've got all my paperwork gathered and organized, all the records I could pull together from the last eighteen months. I've sat down and charted from scratch on a timeline all the weird things that have happened with my body since I got diagnosed with prediabetes, and then some from the time before. I've noted diet changes, weight changes, GI changes, urological changes, medicinal changes, mental changes, environmental changes. There's nothing more I can think of to add.

I wanted to wait to write about any of this, hoping I'd have better news. But here I am, waiting.

I just have to make it to Wednesday. We start fresh there.

Them's fightin' words

I knew getting a dietitian was the first step toward some important changes, but apparently it's starting a small revolution.

I think I'm firing my endocrinologist.

It's not a straightforward story, but the short version is that on my visit to said endocrinologist's office last week to follow up on that pesky kidney stone, I updated him on the diet adjustments I've been making with the help of my dietitian. And he wasn't happy -- the caloric allowances she'd laid out for me didn't jive with what he thought I should be aiming for (he was advocating a much tighter budget). Not one to sit helpless when given conflicting information, I asked him to speak with the dietitian so that we could determine where the disagreements were in their assessments of my needs. His response: "Tell her that I have a subspecialty degree in metabolic disease" -- or some such field, I can't remember his exact words -- "and if she still has questions after that, she can call me."

Huh. Did he really think she (or I) was going to accept credential-waving as an adequate reason to follow his plan?

Sensing I was getting the brush-off, I e-mailed the dietitian after I got home, explaining the discrepancies between the recommendations, and expressed my concern. She immediately got back to me, promising to contact my doctor so that we could get the diet guideline questions resolved.

Apparently, he wouldn't talk to her.

Instead, he left a message for her with his nurse -- one that wasn't far off from what he'd told me to relay, from what I've gathered. And he's still refusing to take the dietitian's calls.

Is it ego? Insecurity? A control issue? All of the above? I'm done speculating. I need a care team, one in which the various members work together. If someone's refusing to communicate, much less collaborate, there's no way this is going to work out in my best interest. So I'm removing myself from his responsibility.

This has been a long time coming -- over the last few months, this guy has said and done other things that left me feeling unsupported and unheard. It's not worth going into detail, but each incident eroded my trust in him just a little bit more. I'm glad to be able to leave his service, knowing without question that the problems with him aren't "just in my head."

But finding that next person. I can't say I've got a lot of confidence in the current remaining team members (with the exception of the dietitian) -- they communicate minimally, by faxed lab results at best. This endocrinologist was kind of the only person who at least went through the motions of examining the bigger picture (he made the referrals to other specialists, so he got their letters back interpreting the results of their tests). I need someone willing to take the time to look closely, to pursue answers.

I happened to read Big Little Wolf's commentary on the doctor-patient relationship as all this was going on, and that, among other things, has reinforced what I've known for a while: that my search isn't going to be an easy one. But I'm looking because I have to. This mess -- or message service -- masquerading as coordinated care has gone on too long.

And I will totally sic all seven pounds of my attack kitty on the next M.D. who tells me his degree is what makes his plan (or lack thereof) superior to anyone else's.

Bone weary

I thought the weekend was supposed to be for relaxing, but I think it's just allowed me to feel the weight of all the stuff from the past week (or two), now that there is space for that. And the feeling is necessary, so fine. But I'm warning next week right now: ease up or ... else.

(I'm not very good at actually coming up with threats, but I'm cocking a very pointed eyebrow at Monday and everything after it. It's my teacher look, which actually won a stare-down contest in a teacher-training workshop many years ago. See that, next week? See that eyebrow?)

My thesis is moving forward for real. I have two solid chapters that make sense in succession and are pointing very clearly to a third, which is more exciting than I have the means to describe. But it's been drawing on a lot of mental resources, and when I've come to the end of the day, I've had nothing for anyone else. D and I both go through this -- he'll return after a particularly intense day, having successfully left work at work, but he doesn't quite make it home in his state of mind for several hours after he gets through the door. He floats in some kind of limbo that makes for pretty quiet dinners. I understand -- sometimes the brain doesn't reset for a little while. So I leave him alone until he's ready.

Last week was my turn to be zonked -- not just from all the research interviews and the mental gymnastics of writing, but from the emotional pull of trying to tell a difficult story. (Forgive me if I don't get more specific than that; I did just spend the week up to my ears in the details.)

I'm glad the writing is working. But it's at the expense of other pressing concerns I need to resolve, like the fallout of getting sick while no one was around. D and I didn't come through that situation in the best way, and we've wanted to talk about it, but I've been too frayed to do it without getting upset, which D doesn't deal well with. Our attempts to have a conversation about how we handled things on both our ends have been kind of rocky. And then there's the question about what all these seemingly separate problems -- blood sugar, GI tract, kidneys -- are really indicative of. I've pushed that out of my mind for a while, but Labor Day weekend was a reminder that all is not perfectly well and that we still don't have real answers as to why three different body systems decided to get wonky, all starting in the first half of 2009.

So I want some emotional reserves for this stuff. I know I can't always have enough for all of it, but for next week, I need more.

Good news!

Avoiding this stuff is paying off.

I went to see my endocrinologist today, and he says my blood work looks terrific. The cholesterol (LDL) levels are continuing to come down (87 now, with the goal of 70 or under) and my oxalates are finally within spitting range of normal (34 now, with the goal of 30 or under). So in his book, I'm in fine shape. "Don't change a thing!" he said at the end of my appointment. "This is exactly where I want you to be."

It is so nice to hear that I'm doing things right. It may not mean that I get my pancreas back to its normal function, but I'm maintaining the status quo, and that means no drugs. Just diet and exercise as usual.

The picture above is from my trip to visit Almost Dr. Sis -- this is like her version of Pike Place Market, and it had so many tempting tasty things at each stand. We steered clear of the bad-for-you items and got some fresh salmon, which Almost Dr. Sis grilled up for dinner. Amazing stuff, especially with fresh asparagus and Mom's recipe for wild rice pilaf and stir-fried mushrooms:


Speaking of which, it's time to start dinner. I'm turning in early after that -- the endoscopy is tomorrow at 7 a.m. Looking forward to having that over with! If all goes well, I'm treating myself to sugar-free molten chocolate cake for dessert afterward.

Number crunching

That's what today has been about.

I've actually been preparing for today for about six weeks (ever since my endocrinologist started me on that low-oxalate diet -- bleh -- at the end of May). I saw the doctor this morning and got the results of my latest lab tests. The good news: the numbers are coming down as we've hoped they would. The oxalate levels are now in the 60s, which is much closer to normal (under 30; my last reading was over 270) and the phosphorus levels are completely normal in the high 800s (previously over 2100). So cutting out spinach and (some) nuts and tea has worked enormously in my favor, which hopefully means no more kidney stones in the future. This also means I have to stay on this diet, but so far, I'm managing.

Of course, though, there's a new wrinkle: I have exocrine problems.

Because I was experiencing some GI unpleasantness in early May (I'll spare you the details) and inexplicable weight gain, I got a referral to another specialist who ordered some tests of his own. It's not definitive yet, but the early results indicate that I don't digest fats properly. The culprit behind this problem is most likely the pancreas (again!) -- but this time it's the part of the organ belonging to the exocrine system, i.e., the part responsible for getting fat-digesting enzymes where they need to go.

So I'm now taking these.


This is Pancrecarb, which basically delivers the enzymes I need in capsule form. I take one capsule with each meal, and the tiny pellets inside get released as their container breaks down. So far, this seems to be alleviating the GI symptoms extremely well. Unfortunately, the weight gain hasn't leveled off yet. (Granted, I've only been on the meds for a week, but ... ) While the upward creep of the numbers on the scale has been slow, it has been frustrating, especially since I've been increasing my workout time -- and all that's done is give me sugar lows more often.

The nurse at the GI doctor's office who gave me my test results said that my body may have been hanging on to extra weight because it wasn't getting enough dietary fat (a bit counterintuitive, but certainly possible, I guess) so my metabolism may need to readjust. If that's the case, I'm hoping that happens sooner rather than later. I'm fine with what I weigh now, but about seven years ago I was nearly 30 pounds heavier (out of the healthy range for my height and build) and I really don't want to go back to that. I've worked too hard to get fit only to have a pancreas on the fritz undo it all!

In the spirit of staying motivated, here are a few blogs I've been reading recently that I'd like to add to my list of nominees for the One Lovely Blog award:

• Cranky Fitness, written by Crabby McSlacker and Merry Sunshine
• Refuse to Regain, written by Barbara Berkeley and Lynn Haraldson-Bering
• Back in Skinny Jeans, written by Stephanie Quilao
• PastaQueen, written by Jennette Fulda
  

So there's some inspiration to fight the good fight without losing total perspective on why we do it. I am not just a bunch of numbers, I know, even if my doctors tend to rely on them to keep me well. Maybe remind me of that the next time I have to step on the scale ...

It's official

... I'm home!

I got in very late last night after traveling for fifteen hours. Left Little U. shortly after 9 a.m. to drop the car off at D's parents' place in Illinois. Had a quick lunch with his mother, then headed to the airport for my 3:30 flight. That ended up being delayed an hour and a half, which made me a teeny bit nervous -- missing my connection would have meant not getting to Seattle until today, and I had a doctor's appointment scheduled this morning (more on that later) -- but I managed to reach Chicago with just enough time to get to the other plane. That was followed by a very long four hours (I got sandwiched between a screaming baby and a lady who snored through the ruckus!), during which I attempted the crossword puzzle in the in-flight magazine to distract myself. Not enormously successful, but given the circumstances, not a surprise. Needless to say, falling into D's open arms when he arrived at the airport was a very, very sweet end to the day. So was coming home to a house whose interiors are beginning to take on the shape of a proper nest. Pictures as we get things set up, I promise!

I haven't had a moment to do anything in that area as I had my second appointment with my endocrinologist this morning, and I'm now at the library since we don't have internet at home yet. The news from the doctor was good and bad -- I'm doing a great job of keeping track of my sugar levels and managing my diet and exercise as he's asked, but there are some new pieces of not-so-great information we received from my last round of tests he ordered in March. Remember that inconvenient little kidney stone incident that happened right before my spring break visit? Well, it turns out that my oxalate and phosphorus levels are off the charts (the former is over 270 units when it's supposed to be under 30 and the latter is over 2100 units when it's supposed to be under 1300). This is nothing to be alarmed about at the moment, but if we want to prevent more stones from forming, those levels must come down. Which means cutting back on tea, instant coffee, nuts, chocolate, and spinach.

D: "But those are staples for you!"

Yeeeeees ....

I can manage the cutting back on chocolate as I wasn't eating much of it to begin with, given the sugar that normally comes with it. But nuts? They're my fallback snack since they're so much lower in carbs than the usual munchies I can't have anymore. And spinach? Grrrr. I do love fresh spinach salads -- guess I'll be switching up my greens. Instant coffee, sigh. The fun flavored kinds were a replacement treat for hot chocolate when this prediabetes thing started up. Time to start brewing the real thing. This isn't exactly a bad change in terms of quality, but when I'm running off to class and need my caffeine quickly --

Oh wait, I won't be running off anywhere for the next year. Mm, okay, that's doable.

As for tea, well, an occasional cup, which is what I tend to drink, will be fine. But I hope that's it on the diet adjustments! Very glad I'm home for good and can get used to all of this in one place.

I'm going to pick up some reading for the next few weeks (all recommendations from professors) since we'll be doing more air travel soon. News on that front as well in the near future.

One week down, fifteen to go

It seems that the end of vacation is always hectic -- in the few days before I had to return to campus again, D and I crammed in eye appointments, our will signing, and rumba lessons(!). Fortunately, all had good outcomes.

The eye appointment for me was important as we don't know how long I've been prediabetic, so getting my retinas looked at was something we didn't want to put off until spring break. (That's when I get to meet my new endocrinologist; for now, my regular doctor is going to keep tabs on me.) As for the will signing, that was something we'd had planned -- we finally got the draft process underway during my Thanksgiving break, after much delay -- so it was good to cross that one off our to-do list as well. And the rumba lessons? Impromptu and entirely for fun. We haven't done any ballroom dancing since our wedding, and the inexpensive group lessons we found at a club downtown looked like an easy way to get started again (they do cha-cha, salsa, foxtrot, waltz, and several other types of dance too). We may do it again next time I'm in town.

The one thing that was truly unplanned during vacation happened the night before I had to leave. For some reason, the fire alarm in our apartment building went off in the middle of the evening and had to be shut off by the fire department. No explanation as to what set it off -- normally, someone's smoke detector within a single unit has to be tripped before the building-wide system goes into effect.

D and I had no idea whether there was actually a fire or not, so we grabbed the most important things we had -- largely, irreplaceable data stored on our laptops and backup CDs! Oh, the embarrassing value on (and faith in) technology we have. Here we are, waiting for the all-clear signal from the firemen in the parking lot. You can see D's shadow next to mine, which is the one holding the camera up.


The trip back was uneventful. The sky was clear as we headed for the airport -- unusual for this time of year -- which gave me a glimpse of the moon before sunrise over the foothills we live in. They mark the gateway to the larger mountain ranges east of us.


I also got a full shot of Mount Rainier from the airport at dawn -- also unusual for this time of year since its peak is usually wreathed in mist.


And once we were in the air, just before I fell asleep for the rest of the flight, I took a picture of the Cascades below us. I can't wait to be heading in the opposite direction over them again (less than two weeks until the next trip!).


Speaking of countdowns, I am now officially through my first week of the spring semester, which means there are fifteen left until the much-anticipated end (for the foreseeable future) of long-distancing. Oh yes, we're definitely marking off the days. Not because I don't like teaching -- I was actually way more excited about what I was going to do with my students on the first day of the semester than I was about my own classes. I'm just very much ready to be moved out of here, for obvious reasons, and also to be done with regular coursework. I haven't been able to focus on the bigger picture of the thesis because of all the nitty-gritty hoops I've had to jump through in these last three semesters. I think getting away from all the distractions will help a lot. If I can just nail down that prospectus ...