Gotta Lose This Weight

I’ve carried on about my frustrations with my weight gain following chemotherapy for leukemia (APL).  It’s no secret that I’ve got a history of eating disorders (just about all of them).  I’ve got to admit, I’m nervous about doing much restricting, as I don’t want to trigger that hell of anorexia again. I was told the last time around (1996) that I probably wouldn’t live through another relapse. As it is, some of my medical diagnoses weren’t identified until after that last relapse, and they’ve disabled me.

But I’m getting desperate.  I’ve got some diet journals to start using on January first… I’m not much into New Year’s Resolutions, but I do want to have this weight gone by my 50th birthday in November.  I hope I can lose the weight without losing my mind.  I have severe intolerance to heart rate or heat increases, so exercising isn’t really an option that will be of any major benefit.  I can stretch. That’s about it.   If the dysautonomia wasn’t an issue, the disc and joint disease is.  Sounds like excuses… it’s my life. I used to walk like a maniac, and loved it. I’d love it again if I could take my MP3 and hit the sidewalks.  No dice. I’d end up laid out on the side of the road.

So, I’ve got to cut back on calories considerably.  I have to be diligent. But I can’t go crazy with it.  I really just want to be more healthy- not ‘skinny’.  I don’t know how this is going to work.  But I’ve got to do something.

America’s Shameful Truth

To other countries, especially those we send financial aid to, it may seem unbelievable that ANY American lives in poverty, or has any problem getting enough food.  Looking at our obesity rates, it looks like we need to be sending more food overseas, and subsidizing treadmills here.  But it’s much more complex and complicated than what the surface image shows.  Malnutrition isn’t just about inadequate food, it’s also about inferior and altered foods.  Poverty isn’t just about living in recessed or depressed areas, but a result of the trashed economy.

Per the 2011 statistics from a hunger statistic website, 15% of Americans were living at or below the poverty limits.  (Roughly one in six Americans is poor). Those limits are low enough to make basic expenses impossible to meet. Poverty limits are, however, above minimum wage if someone has one full-time job. (Our minimum wage supports poverty).  The standard set by the government to define poverty is ridiculously low. And people are out there living below that limit.  I’ve visited areas in this country, with our tourist brochures of amazingly beautiful parks and tourist sites, and maps of the movie stars’ homes  in Hollywood, that consider a cinder block house with a tin roof to be a sturdy- and enviable – home.  I’ve seen them.  I’ve seen the barefoot kids with the hollow eyes. I was only 16 myself at the time, and it’s an image I won’t forget.

According to those same statistics, 50+million people in America don’t have enough food.  Often the foods that are affordable are nutritionally bankrupt. Fresh produce is a luxury and at the bottom of the grocery list, as it’s more important to get calorically dense items for each dollar spent. Much of that is junk food, so it’s very  possible to have someone who is visibly obese, yet deficient in many nutrients.  Over 16 million children in this country know hunger as a daily part of their existence.  How that will affect their physical development and well-being is better known than how it will affect the country as a whole, as their generation will be compromised in their ability to learn. That will result in kids who never fill their potential, or maximize their earning potential- and ability to get out of the cycle of poverty and hunger.

Americans are often portrayed as relatively wealthy and lacking nothing. When it comes to food, our obesity rates are horrible and getting worse.  With the economy being as bad as it’s been in the last several years, the effects of ‘not enough’ are hitting socioeconomic groups that had been very comfortable and stable.  Homeless shelters are getting more families with educated parents who simply can’t get work, and who have lost their homes.  Americans need help here ‘at home’, and all of the financial aid sent to other countries is frustrating when the statistics here are so unacceptable.  There are many who are very hesitant to ‘give handouts’ as it perpetuates a cycle of dependency in those of a mindset of entitlement.  That is different than people who legitimately can’t get adequate nutritious food.  Yes, there are Americans whose greed and inability to deny themselves nearly everything they want makes them look rich (but in debt up to their eyeballs). There are those who are successful, and doing well.  But there are far too many who actually have very basic needs that aren’t met. 

There are wonderful private charities that do what they can. There are rescue and homeless shelters. There are food banks and soup kitchens run by non-profit organizations. There are thrift stores that benefit programs for the homeless and poor. They all work very hard, and do a wonderful job- but the job is too big. Our own citizens are still in a world of hurt.  NO child in this country should leave home for school without a nutritious breakfast. No child should come home after school to the bleak fact that they won’t have anything for dinner.  More than sixteen million kids live in that pain. They don’t just have poor quality food, there isn’t enough of it.

I think it’s great that we help other countries. I think it’s important that we continue to do so- and yet we need to get our own house in order.  We need to walk the walk, and quit with the cheap talk.  If other countries sent people to document areas in the Appalachian mountains,  depressed rural communities, inner city school kids who are falling asleep because they don’t have the energy to stay awake,  or the people who would do anything for a job, but can’t find one- and see the reality of this country right now, they’d be sending us aid.

The quality of American crops/food products is also an issue. GMOs- or genetically modified organisms- are what make up the vast majority of corn, soy, and canola crops in the US.  Few processed foods don’t include one or more of those crops. A lot of rice is also genetically modified. This is done to increase the yield per acre, so for financial gain, even though the studies on rats have shown tumor growth and organ failure, and human studies were never done. Monsanto (a pesticide corporation) is the manufacturer of these seeds used in our food supply. A bug killer company makes  the building blocks of our food.  Any product made from their corn, soy, or canola crops are also genetically modified, so high fructose corn syrup, corn starch, soybean oil, soy protein, etc are also ‘contaminated’ by the GMO process.  Many countries will not let GMO products into their borders, or ban the growth of them there.  The US government doesn’t care about the human effects of GMOs.  Bovine growth hormones, used to increase milk production in dairy cows, is also of questionable safety.  Artificial sweeteners also have links to Monsanto.  There are ‘organic’ options- but unless a product is labelled ‘USDA Certified Organic’, it’s possible that a GMO seed was used, but grown without added chemicals.

So, we continue to send billions of dollars to countries that aren’t solid allies. We cut back on nutrition programs here. People (and the politicians) fight about ‘handouts’ while kids go to school hungry, and don’t see dinner. Our obesity rates soar, partly because of disordered relationships with food – but also because nutritious food can be inaccessible financially. Junk is cheap.  Families are in shelters because jobs aren’t there to make rent or mortgage payments possible. It’s sad.  The ‘new’ American dream has been greatly altered from the post-WWII dreams of owning a home and living with minimal debt (and that debt was for needs– not wants).  It’s a new definition of survival.  Yes- the vast majority of people in the US are making it- however well or poorly. But there are millions…MILLIONS… of US citizens who are malnourished from hunger.  I don’t have any solid answers…but I do think that our priorities need to shift from such a ‘fix your neighbor’ mentality, to ‘save our skin’ outlook.  Maybe not permanently, but until we get a handle on our own horrible social and economic issues here.

America is hurting. Add to that the divisiveness of our politicians,  the more extreme members of political parties (to the point of hatred and absolute repulsion for the other ‘side’), and the relationships between ordinary citizens based on the same hatred, and the idea that anything will be solved seems unreachable.  I know that people from 23 countries have read my blog posts.  I wonder how many of those countries know how crazy things are here, and how many of OUR citizens are in need of help.

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.