Weighting and Watching

August 2, 2006 at 11:54 am (Uncategorized)

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For the past couple of weeks, I’ve descended a dark and narrow stairway into an inner sanctum of hell. No, I haven’t caught my husband having an affair, nor have I gambled away all of our savings. I haven’t gotten worse medical news either. What I have done, instead, is re-pledge myself to Weight Watchers.

The worst thing about Weight Watchers is that it works. If you scrupulously track every morsel of food and drink that passes your lips, and confine yourself to what seems like shockingly minuscule portions, you will lose some weight. But it won’t be easy. I haven’t wanted to jinx myself by boasting too soon, but I’ve lost six pounds. Unfortunately, I’ve got over fifty more to go.

For those of you lucky dogs who have never followed the Weight Watchers program, it works like this. Based on your weight, you are assigned a certain number of points that you are allowed to consume per day, ranging from 25 to 35. You then scrupulously record the points values for everything you consume. A cup of pasta, for instance, has 4 points; one slice of whole wheat bread has one point; a medium Dairy Queen Blizzard has 17 points. I’m not sure how they determine points values, although I think it involves an equation of calories, fat grams, and fiber grams.

Unlike other weight loss plans, you aren’t required to buy special foods or drink special shakes, and there are no “forbidden” foods in the Weight Watchers lexicon. It’s simply all about the points. So, if you really want that DQ Blizzard, you need to scrimp and save points elsewhere in the week and then you can splurge on the frozen delight. Exercise gives you additional points to play with.

You can either attend weekly Weight Watchers meetings and record all of your points in a little booklet they provide, or you can follow the program on-line, where you get to record everything in special spreadsheets. I went to one meeting and felt tremendously weird – I guess because I’m not a group type of person. So, I do the whole thing virtually.

The program makes me totally neurotic. I spend most of my day thinking about food. When I eat, it is with a finickiness I don’t normally have. I measure pasta, weigh meat, and end every meal feeling hungry. I drink a lot of water, and snack on plain, air-popped popcorn. (Yum, Styrofoam! But at least it fills me up.) The most difficult aspect for me is preparing something for Andrew and then not eating any of it myself. I’m certainly not going to make my toddler follow a low-fat, often monotonous, diet just because I’ve gotten chubby. So this means, having willpower when I make him potato pancakes or hamburgers or some other points-laden food.

Although it is unpleasant, I believe the neurosis is necessary. This hyper-awareness of everything I put in my mouth – and how it relates to a day’s worth of food – is what allows me to eat more sensibly. I’m relearning what a serving of something is (and my, does it look small on the plate). Eventually I think this will become less self-conscious and more habitual.

It’s hard, though. The high dose of prednisone I’m on makes me perpetually hungry, and nauseous too. The only thing that settles my stomach is food, so it’s been an ordeal to handle a stomach that is both churning and empty. Plus, food provides comfort. When I’m feeling lousy and overwhelmed, there is nothing like a gooey brownie (ten points) or a handful of potato chips (4 point per 14) to soothe. So, not only am I relearning what is an acceptable amount to eat, but also what is an acceptable reason to eat. I’d like to say that the brownie and the chips don’t make me feel better, but they usually do. So it all comes down to willpower.

We’ve been talking and thinking about willpower a lot lately because one of Andrew’s favorite stories explores the issue. In “Cookies” from Frog and Toad Together, Toad makes a batch of delicious cookies and brings them over to Frog’s house, whereupon the two friends fall on them and begin to overeat. “You know, Toad,” says Frog with his mouth full, “I think we should stop eating. We will soon be sick.” “You are right,” Toad replies. “Let us eat one last cookie, and then we will stop.” Many “last cookies” later, Frog attempts to make the remaining cookies inaccessible. He puts them in a box, then ties the box shut, and finally hoists the box on a high shelf. To each of Frog’s efforts, Toad simply tells Frog how easy it will be to get at the cookies anyway. Finally, in frustration, Frog throws all the cookies outside for the birds. “We have no more cookies,” Toad says mournfully. “Yes, but we have lots of willpower,” Frog says. The story ends with Toad telling Frog he can keep his willpower and going home to bake a cake.

The other day when we were grocery shopping, Andrew piped up from the front of the cart that we needed to look for “willpower.” If only it were that easy, I wanted to say.  But instead, we made a game of it and hunted up and down the aisles before determining that Safeway had “sold out” of the precious commodity. Maybe I can’t buy my son a package of willpower, but I can good naturedly show him what it looks like in action – if I don’t die of hunger first.

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You’re Getting Very Sleepy

August 1, 2006 at 2:57 pm (Uncategorized)

Tired-9135251.jpg    Today is one of those days I have come to call my sarcoidosis days. I am inexplicably and thoroughly fatigued. I got plenty of sleep, ate a nutritious breakfast, and yet I feel so tired that I could die.

The first time I experienced fatigue like this was soon after my son Andrew was born. I would show up to post-baby obstetric appointments, and report that I was exceedingly tired. I told friends and family that I was exhausted. Everyone – every single person – basically said, “Well, duh, you just had a baby. You’re supposed to be tired.” I would take in this information, wait a couple of days, and remark again that, really, I felt extraordinarily bad. Truthfully, I was used to sleep deprivation. I was a free-lance writer and a first-rate procrastinator, which meant I had an almost legendary reputation for gutting out projects in the wee hours of the morning before a deadline. I once wrote the better part of a book in a three day period, during which time I slept for a total of three hours. However, the post-Andrew tiredness made those escapades feel like a nap-filled vacation.

Three months later, I was diagnosed with sarcoidosis and learned that chronic fatigue was one of the most commonly cited symptoms of the disease. I felt like flipping off the world for telling me to suck it up because I had just had a baby. It was similar to learning that Andrew’s supposed “colic” was instead severe allergies to wheat, milk, and soy (all of which he can fortunately now consume.) The poor kid was projectile vomiting, covered in a rash, and pooping out long strings of mucus, and everyone kept telling Jay and me it was normal. Finally, we had the good sense to take him to the pediatrician, who then referred us to a pediatric gastroenterologist, and learned that technicolor distance puking is indeed not normal behavior for an infant.

Read any article or web site about sarcoidosis, and you’ll see fatigue listed as a common complaint. Last year, I attended a conference on sarcoidosis that was open to both physicians and patients. Nearly every patient I spoke with complained about horrible fatigue – a kind of tiredness that doesn’t make you yawn so much as it makes you want to stop living. Nearly every physician presenting at the conference noted the symptom in their overviews of the disease, and then went on to dismiss the problem as something that wasn’t fully understood or treatable. I have raised the issue with nearly every doctor I’ve visited since my diagnosis, and I always get some version of the same answer: adjust your lifestyle; rest more. Clearly, these people have never had two year olds.

For me, one of the most irritating aspects of this fatigue is its fickleness. It comes and goes, and I’m usually unable to understand why it shows up this Tuesday, but not last Tuesday; why it might last a week this time, but stay for nearly a month next time. To a certain extent, planning my life would be easier if I simply felt shitty all the time. Then I would put in place a system that ensured me a certain amount of rest each day, and I wouldn’t try to push myself as I do now. It’s quite perplexing why going to the gym will invigorate me one day, but three days later will leave me so exhausted and ill that I feel like I can barely drive the car home.

I suspect that doctors steer clear of the issue of fatigue because it is difficult to assess. Scientists love that which is quantifiable. It’s one thing to look at an X-ray or a CT scan and see something that can be measured; even pulmonary function testing reveals data that can be collected and assessed. Tiredness, though, is slippery. How do you measure one person’s fatigue and compare it to earlier periods or to other people? How do you separate out other conditions, like depression, which frequently go hand-in-hand with having a chronic illness such as sarcoidosis and that also cause fatigue?

Some physicians do seem to be plugging away at the problem. At the sarcoidosis conference, there was a team of researchers from the Netherlands who were attempting to correlate chronic fatigue in sarcoidosis patients with small fiber neuropathy – which is, basically, inflammation and damage of the peripheral nerve fibers. The doctors I saw at Mount Sinai were intrigued by this line of research, and took what seemed like slightly too much pleasure poking and shocking me in an effort to measure the damage to my small nerve fibers. They vaguely alluded to possible treatments, but then told me I could never actually take any of these drugs because of the potential consequences to my heart, which is already affected by the cardiac sarcoidosis.

But the lab rat aspect at least demonstrated some physician interest. The vast majority of doctors seem to treat sarcoidosis patients and their complaints of fatigue as a giant pain in their collective ass. One doctor at the sarcoidosis conference actually stood up in a room full of something like 50 people to comment on the Dutch folks’ presentation of their findings on fatigue and small fiber neuropathy. This ugly, fat woman launched into a diatribe about how her patients were just lazy and didn’t want to do the things like exercise that would make them feel better – and less tired. “So many of them just want to go on disability,” this human embodiment of a toad told the room. A great many of these sage doctors wisely nodded their knowledgeable heads. Silly sarcoidosis people, malingering on the couch, eating bon-bons, and waiting for the disability check to come in. And then they have the gall to come pester these great minds about being tired. Well, Toad Woman, I have news for you and your cronies. I drag my sorry self to the gym more days than you obviously have, given the ample size of your posterior, and I am not rejuvenated.

Come to think of it, nothing really makes me feel less tired, not even sleep. I sometimes fall into bed in the middle of the day out of necessity, but when I wake up, I don’t feel less fatigued. Sleeping until noon doesn’t mean I’ll feel rested either. The best I can figure out is that the tiredness builds inside me during a period of days. Working, taking care of my son, exercising, having people over for dinner, spending a day at the lake… all these activities take a toll on me. Individually, I can handle these tasks, but at some point, the cumulative effect of them is to decimate me. Then it takes days to rebound. I am learning that I will pay the price for having a busy few days. When I’ll have to make good on that payment, and how steep it will be seems to vary tremendously.

I’m sure that part of the gap that exists between doctors and their sarcoidosis patients on the question of fatigue is that until you have experienced this incredible tiredness, you cannot appreciate it. Let me assure you that chronic fatigue is not akin to being sleepy. It’s not as if sarcoidosis patients are all staying up late to watch The Daily Show. No, this tiredness feels like it starts in my bones and radiates out. It hurts to be upright. It hurts to think. My eyes twitch. My skin feels ultra-sensitive and achy, almost like in the early stages of the flu. I frequently run fevers of up to 102 degrees with this tiredness (and, no, I have been assured, the fevers do not indicate some underlying infectious explanation for the fatigue). My joints throb. I can’t stop yawning. Standing at the stove to cook dinner is painful. I worry about driving the car with Andrew in it when I’m feeling this way because I fear I will fall asleep or else space out and do something moronic behind the wheel. I forget appointments. My teeth throb. And I’m sure there are thousands of other sarcoidosis patients out there who have fatigue symptoms far worse than these.

I’m not sure what I hope to accomplish by writing about how miserably tired I feel. Most of the people in my life already know how debilitating this fatigue can be. I hope one or two doctors land on this site and take the time to read and perhaps to understand that when someone complains about fatigue, it is not something to dismiss with a flippant wave of your hand. It’s like having the flu. Perhaps there is nothing medical you can do for them, short of telling them that this is a real symptom of a real illness. But by listening and taking them seriously, you will have done them a great service.

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