Riding The Scale: The Eating Disorder Roller Coaster

Eating disorders don’t always fit into nice little diagnostic criteria.  There are as many variations of anorexia, bulimia, binge eating disorder/compulsive overeating, and combinations of those as there are people with eating disorders.  The diagnostic criteria give guidelines for when to apply a specific diagnosis, but they are often very limited in their scope.  If someone starts out quite overweight, but loses a significant percentage of that original weight, and has the behavioral characteristics of a ‘pure’ anorexic, they are anorexic for treatment purposes. But, the diagnostic criteria is often limiting, and the person doesn’t get the proper treatment. They are viewed as not ‘sick enough’. I’ve also heard of 78 pound adults who didn’t have ‘enough’ of the behavioral characteristics to qualify for help. It’s crazy.  Restricting bulimics may have generally normal eating patterns between binges, but then starve afterwards or overexercise  and not purge by vomiting or laxatives- and they are misdiagnosed.  It’s about the overall picture, not just the individual behaviors.

From the time I was eleven years old, I was a compulsive eater when I could get to the store on my bike and buy food. My food intake at home was restricted by my mom beginning at age 7 (she didn’t want me to be fat- as she perceived me to be). I was hungry.  So, when I started babysitting (which I did for neighbors at an early age), I’d save my babysitting money to go buy fruit roll ups and a cinnamon roll at the bakery next to the grocery store.  I’d eat the cinnamon roll on the way home, and sneak the rest into my bedroom by cramming the fruit rollups into my socks.  As I got older, and had more babysitting money, I’d get more stuff. I’d also bought a bigger bike with a bag on the back that held more than my socks did.  I was sneaking food before 7th grade.

 

When the imposed food restriction began, at around age 7.... not fat !

When the imposed food restriction began, at around age 7…. not fat !

During high school, I often joined in on diet contests, where I’d lose up to 14 pounds in a couple of weeks, usually ‘winning’.  Between high school and my freshmen year at the University of Illinois, I became anorexic over the summer when I was working at a church camp.  By the time that first semester started at the U of I, I was ‘hooked’.  My life was never the same.  At that time (1981), the ‘Feighner’ criteria was used for diagnosing anorexia, and was based on a percentage of the original weight being lost, along with behavioral characteristics. Then a ‘refusal to maintain minimum weight’ was instituted, so the criteria eliminated people from  for treatment eligibility.  BMI wasn’t around yet, so  specific weight wasn’t required for diagnosis until then.  That made even more people ineligible for help.

Bulimia is generally diagnosed on a person’s self-reporting, or the observations of close friends and relatives- not weight.  Other telltale signs are the calloused fingers/knuckles, eroding teeth, weight fluctuations, presence of laxatives and/or diuretics, and compulsive exercising.  Those can also be seen in anorexics who are of the ‘bingeing’ subtype.  Compulsive overeaters are generally thought to be obese, but that isn’t always the case.  Much depends on the frequency and activity level of the compulsive overeater/binge eater.

These diagnostic criteria are used for insurance purposes- not for any true benefit for the sufferer.  The insurance forms require a code in order for the treating therapist or treatment center to be reimbursed. It’s as simple as that. Money.  It’s not known how many people die from eating disorders that aren’t correctly diagnosed, because the criteria is so narrow and often weight biased.  That seems so hypocritical when the treating staff then tells the patient that it’s not about weight  (which it’s not- but the diagnostic criteria often depends on it).  But money will always win out over what is best for the patient.

I spent years in treatment for anorexia, and after one outpatient treatment center’s rules about no diet soda or food, my weight blew up to 300 pounds. I learned nothing about portion control (their model was to eat when hungry, stop when full; when someone starts out with abnormal eating habits, like having food restricted for them, the hunger/satiety signals don’t work).  Most people who know me from my hometown never saw me like that.  At some point, I lost over 100 pounds from a combination of undiagnosed diabetes, and then a bad relapse into anorexia.  Since I was overweight, I wasn’t diagnosed as anorexic, even though I’d refuse to eat more than 300 calories per day, used laxatives,  and walked like a maniac for miles at a time.  I was sent to treatment, and even though my ‘eating disorder inventory’ was purely anorexic, the treatment center basically lied to insurance and said I was bulimic  in order to get paid (I did use laxatives, but never binged during that time).  I wasn’t ‘thin enough’. But I’d lost 50 pounds in three months, and panicked around food.

I managed to get myself out of that last relapse after that ‘treatment center from hell’ did little but give me access to a good dietician (the only staff member of any use). She did help me start eating somewhat better (nowhere to go but up at that point).  After that, I read every book I could find on eating disorder recovery (professional books), and applied the principles and techniques to myself.  It took years, but I got better.  My weight settled out still in the moderately overweight range, but considering where I’d been, I was about 90-110 pounds below my highest weight.  I could live with myself.

Life went on, and I ended up with gastro-esophageal reflux disease (GERD), which was very uncomfortable before being diagnosed, and I lost about 30 pounds unintentionally. It was ‘good’ weight loss, but it was because of a disease process, and thus ‘abnormal’.  The GERD got treated, and my weight went up a bit, but by that time, I’d gotten used to eating one average meal over the entire day.  That was my new ‘normal’, and while it wasn’t good, it wasn’t based on any eating disorder behaviors. I was even putting a tube from my nose into my stomach every night to supplement with diluted liquid nutritional drinks to get more protein and fluids into my body; I never would have done that during active eating disorder relapses.  My doctor knew what I was doing, and initially she wasn’t that thrilled with it (she also knew I was an RN and knew the safety measures to take, so didn’t ‘ban’ me from doing it- which would been pointless; I was trying to keep from relapsing, and would do whatever I had to in order to avoid another round with anorexia).

I was fairly stable for a while. Then I ended up with leukemia in 2010.  The initial induction chemo caused ‘bad’ weight loss (even though I was technically overweight), and muscle mass loss.  When I got done with that, my eating was still strange, but I gained back the weight I’d lost in the hospital. Then I started arsenic (treatment for the type of leukemia I’ve got; in remission now), and after that, a year of 3 different pills. The chemo caused weight gain; I remember that first week on arsenic when I was in the hospital, and overnight my ring didn’t fit from fluid weight gain. The pills also had weight gain listed as a side effect.  My blood sugars went nuts (I’d been diagnosed as diabetic in 1995), and I was needing MUCH larger doses of insulin to keep from requiring hospitalization for high blood sugars. Insulin causes weight gain.  Chemo ended, and even a year after the last dose, I’m still holding onto the weight even though I’ve tried to lose it.  Calorie counting, high protein, meal planning, etc.  It’s not working.  Oh, and did I mention I’m pre-menopausal?

So, I’m in a position now of needing to lose the weight I gained, but not get triggered back into unhealthy habits from the past.  I’m very limited physically now, so exercising is a major struggle.  Doing laundry hurts.  I haven’t been pain free since 1996 when I was diagnosed with fibromyalgia.  I also have dysautonomia which is made much worse by elevated temperatures (including increased activity- messing with the car battery yesterday had me getting to the point of ‘low’ symptoms; much more of that, and I would have been ‘out’ for the rest of the day). I’ve got several bone spurs on my spine, and degenerative joint disease. My right lung has scars from many, many pulmonary emboli in 2007.    It’s a major problem.  At this point in my life, I’m obese by the numbers, and when I see photos of myself, I see the face of one of those orangutans with the huge ‘chin-neck’.  Physically, losing weight is very important.  I love jewelry (rings and earrings, not so much the other stuff), and want to fit into my rings again.  I want to be healthier.

I just need to be very careful not to end up back in negative territory.  I’ve been up and down the eating disorder roller coaster repeatedly.  I’m not ‘eating disordered’ at this point- the weight had a start point during chemo- not because of overeating. My dad comments that I eat vicariously through the Food Network shows and eat ice (which is NOT how I eat- LOL), but he notices that I’m not overeating, and is a bit bummed that I don’t have better snacks around when he comes over.  Thirty-eight calorie freeze-dried apple chips aren’t his bag 🙂

I’ve been somewhat browbeaten by my oncologist about the weight loss, and I’ve explained my history of eating disorders.  I don’t think he gets it at all.  But I’ve got to protect myself from anything that leads me down that familiar, dangerous path.  I see my regular doctor, and will be seeing an endocrinologist for the crazy blood sugars. Something happened to make those crazy even before I gained the weight during the entirety of the chemo; the added pounds now make insulin work less effectively, so I need more insulin.  It’s a vicious cycle.

I’m doing what I can, emotionally and physically.  I have to focus on health, not numbers.  Medicine likes numbers.  For someone with an eating disorder past, numbers are hell.  They have hooks that snag me back into that dangerous area of seduction.  I have to be vigilant, but still get the job done.  Most of the time, I feel incredibly misunderstood.  Like I’m hanging onto this weight for the heck of it.  I’m not.  😦  I want to feel better, and not like I’m lugging around a 40 pound bag of rock salt everywhere I go.  I want to fit into my older shirts, and not look at my legs and see tree trunks.  I have motivation- to stay healthy, but still get rid of this weight.

I’m tired of explaining that I am actively trying to lose weight to my oncologist. I no longer agree to be weighed there. I won’t discuss it with him; it’s not his job to keep harping at me about it. But he keeps bringing it up, and spends the majority of the appointment talking about how much I need to lose weight.  I’m not stupid.  He’s kept me alive with the chemo for the leukemia; job done.  This has to be done carefully, and with the doctors who can really help me, not just keep telling me I’m fat (not in those words, but it means the same). I KNOW I’m fat.  I’m not blind.  And I’ve got a history that could be repeated if I’m not careful.  That is my job, and I won’t let up in efforts to lose the weight in a healthy manner.  There is nothing that is worth going back into relapse mode.  Once ‘it’ kicks in, it’s not a matter of turning it off when I hit my desired weight.  It’s insidious, and I’m not sure I’d survive another relapse. I’m not a teenager, or in my 20s anymore.  I don’t ‘bounce back’ anymore- stuff just adds up.  I have to go slowly, so I can be around to enjoy being at a more healthy weight.

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