Tuesday, March 31, 2009

A Break from the Regular Programming

We are back from a great trip in Florida visiting my folks, as well as Mickey and Minnie Mouse, and I must post a vacation wrap-up with adorable photos. I have had that on my "to-do" list since we returned, but I have been distracted by the task of getting back into my master's capstone (thesis) work and slowly beating back the piles of suitcase laundry and general clutter we left in our wake when we flew off for our trip. I have also been distracted by my health, which brings me to my non-parenting related post today.

Warning: this is not a happy, funny post. This is the real stuff. Okay, warning over.

I had a health scare a few months ago, one that required some tests to rule out what I would call "big nasties," like cancer. The tests gave me the all-clear for "the C which must not be named," and I was relieved. The bad news---the symptoms that brought about this scare didn't dissipate just because we knew I had no acute emergency. Funny how that is---positive test results, while reassuring, just don't make illness go away. That meant that I would have to meet with specialists to further investigate, and because "prompt" in our health system means 6-8 weeks, those appointments were first available this week.

I began my morning today with an examination from an endocrinologist at the University of Chicago Hospital. He was a nice man, a smart man, a competent man, and a compassionate man. I have seen four endocrinologists throughout my lifetime, and I have to say, they are some of the kindest doctors you'll ever meet. I know this is a generalization based entirely upon my personal exposure to physicians, but I believe that there is something about this specialty that attracts thoughtful problem-solvers---individuals who are committed to deal with chronic disease and the patient behaviors that affect them on a day-to-day basis. He was just one of these doctors.

With all that going for him, though, I left my appointment feeling crest-fallen, sullen, introspective, and somewhat crushed. You wouldn't have known it by looking at me, and you certainly wouldn't have picked up on it talking to me---my outwardly cheerful, giggly persona often persists even in my dark moments, a quality I'm not sure is a blessing or a curse.

Obviously, the doc needs to wait for test results to come back, but in truth, the examination seemed to give me the "you are basically healthy" sign-off, because no specific, specialized diagnosis popped forward as plausible. I don't feel healthy, though. The reality is this---even if we can't figure out a boutique diagnosis that neatly explains all of my new symptoms, and even if we can't assign a label and a drug and a special diet and a course of action, and even if my blood pressure is fantastic (and it is) and I come out with perfect lipids and hormone levels that gals everywhere would envy, I know and the doc knows and everyone that knows and loves me knows, I am suffering from a disease. A diagnosable, very real, very unpleasant disease. That disease is obesity, and in my experience, it is a nightmare.

I began gaining weight, just a little bit at first, around the age of 11. I have steadily gained weight since, with some periods of weight gain more fast and furious. The worst of these has been since the birth of my daughter---I went into my pregnancy overweight but in fantastic shape, and now, 3 and 1/2 years later, I am 65 pounds heavier.

That's right, 65 pounds. On an already overweight frame, that is a lot of weight, very quickly added. Considering the fact that I barely gained 25 during my very healthy pregnancy, the post-partum pounds feel even more oppressive.

In my experience, a person, when acclimated to being overweight, can add pounds steadily without being overly burdened...for awhile. I got used to not being able to shop easily, to not be able to comfortably wear certain types of clothes (i.e. dresses, button-down shirts, etc.), to look for the most comfortable place to sit in a room because not all chairs (especially those with armrests) are comfortable on my hips, to expect to outgrow clothes over time, despite my best efforts to control my diet and exercise regime---things that I know most people who haven't had a serious weight problem never consider, but that become the daily pattern for the obese. At some point within the last year, though, I gained enough weight that I hit a tipping point (thanks, Mr. Gladwell), and nothing worked easily anymore. I stopped being able to fall asleep without insomnia or sleep well once down. To eat without discomfort. To move without pain. To shop for clothing without great hassle. To fly on an airplane without worry about fitting in my seat. The list goes on and on.

So as I went to the doctor this morning, my recent acute symptoms to discuss, I had obesity on the brain. I prayed that I would not be too chipper---too happy-go-lucky and "I'm totally friendly and happy and okay" that I would not be able to express that I was really needing some help. I also prayed that I would not simply irrupt into tears and incoherently exclaim something like, "Please, help me, I feel like I'm slowly, painfully, shamefully dying, and I've read everything and tried everything and nothing has stuck and I can't continue on like this and PLEASE PLEASE PLEASE notice that this is a real, terrible illness that requires some personalization and finesse and support and guidance and is not simply a personal failure of my resolve or commitment and please don't just tell me that I need to eat less and exercise more and have I considered yoga because it is great for stress because I swear that I know those things and for-goodness-sake I'm studying health behavior change for my master's capstone and I still can't crack the code for myself and I know that if I had some real, medical help and some real, medical support for pennies-on-the-dollar I could turn this ship around and PLEASE PLEASE PLEASE be that person to get that process started with me because I will work as hard as I can if I have some hope that this can get better and I just must have some hope."

I wasn't too chipper, and I didn't cry. I rode down the middle, which was a major accomplishment for me, considering the gravity of the things I wanted to discuss. The doctor listened to me, and I think he earnestly tried to get the whole picture and figure out how to help. All the same, obesity didn't end up being the conversation piece it should have been---it was more like a "yes, I can see how terrible it feels to be heavy" discussion. After wrapping up the appointment and getting several vials of blood drawn by a very skilled phlebotomist (I didn't even feel the needle), I started to replay the appointment in my head, and that is when I began to get angry. I wasn't angry at the doc, per se, I was angry with the whole experience, one that I have had repeatedly throughout my adult life as my weight has gone up and up.

An endocrinologist's office is peppered on every wall and surface with advice for diabetics. "Make sure to get your prescriptions updated DURING YOUR APPOINTMENTS." "Testing supplies may be available to you at discounted rates---ask our coordinator for details." "Have you spoken to our nutritionist lately? She's here for YOU!" "'A Little Sugar' is a big deal---make sure to check your blood sugar regularly."

Diabetes is a really terrible disease. Type II diabetes occurs when insulin-resistance is developed. Obese people have out-of-whack insulin levels, and are likely to eventually become diabetic. From my view as a non-diabetic, obese patient, it is as if obesity is simply a symptom that leads to a REAL disease, not a terrible disease in and of itself. After leaving the office, I found myself asking this question: "Is that what it is going to take? Should I just drink colas (my vice), gain more weight, and become diabetic to get some disease-management help from the system? I keep gaining weight, I keep crying out for some help...do I have to let this obesity worsen into other comorbidities before I can get that help?"

Obviously, this is absurdity, but really, the complexities and dangers of the disease that I currently have should warrant posters and interventions and clinical specialists and the whole nine yards. This is an epidemic in our nation, but in my experience, the disease is treated like a medical riddle wrapped in a set of extremely bad lifestyle choices. The answer for the chronically overweight or obese is that they need to do better with their nutrition and activity, but the underlying riddle is why, chemically/psychologically/physically/emotionally, are their bodies prone to make poor choices and/or respond disproportionally to those choices, once made? No one doctor, no matter how committed to his or her patients, can solve the riddle---it is too individual and too darn hard---so well-meaning docs hammer home the importance of good lifestyle choices, despite the fact that the recidivism rate following weight loss (i.e., the rate at which people gain back all of their weight or more) is off the charts, sometimes quoted as high as 95%. That's a stat you just don't hear on Jenny Craig ads.

I believe, quite certainly, that obesity is the underlying disease that, along with my current high level of stress, is nudging my physical symptoms to the breaking point---the point that led me to get evaluations done for my health scare in the first place. I don't feel, however, that I am treated like a patient with a disease. I know, who wants to be diagnosed as ill? Why on earth would I want to claim to be diseased? It certainly would come back to bite me in terms of insurance to have a pre-exisiting, chronic condition. But you know what feels worse? Knowing that I have a serious problem, and also knowing that it is an almost impossible feat to find the help that I need to deal with it---help that would not be expensive to provide in comparison to many other diseases we treat in this country every day.

The truth is, obesity is a "big nasty"---it is, without doubt, as deadly as cancer to me, even if it isn't as fast-moving in its effect. It pains me every day, it colors all of my interactions with others (including my family), and it steadily, unrelentingly damages my body. Why the sight of me in a medical establishment does not send off warning bells and alarms and red flashing lights is truly beyond me, because I hear those bells, I feel the alarms, and I am telling the professionals I trust that I have picked up the warnings, and need help putting out the fire and escaping the burning building, so to speak.

I want to be responsible, to heal my body, to make the right choices, to live a healthy life---I'm not a victim, I don't want pity, and I'm not oblivious to the decisions that I make that contribute to my illness. I am just so tired of feeling ashamed and alone in this fight. To my mind, seeking out medical help over and over, even when it results in no change from the status quo, and even worse, does not help curb additional future damage (i.e., more weight gained, more symptoms, etc.), is the mark of someone responsible and willing to do what it takes to take care of herself.

After I got angry today, I got sad. I'm still sad. I'm writing this post, even though it is more personal than I usually blog and is more disclosing than I usually am, because I just can't imagine that I am the only one who feels this sad about this disease. Justifiable anger, when consistently unresolved, turns into deep sadness, because it makes a person stop feeling hopeful. Loss of hope, at least in my experience, doesn't make it easier to stop using coping behaviors (like eating, for example) to feel better. It is a vicious cycle, and because I can't seem to find the help I need to break it in any other way, I'm describing that cycle here, and at least putting the truth out there. It is a start.

I promise, my next post will be back to the regularly-scheduled programming: funny quotes from EJ (like two quotes from today when, responding to a driver that cut us off in traffic, she explained that her imaginary friend, Whyatt, "is always nice to jerks," and her teachers at school say, "it is not okay to cut in line!"), pictures of the kiddo in her glory at Disney World, and general adventures in juggling grad school and marriage and parenting. In the meantime, please feel free to comment on this post, even if you are usually a lurker---discussion about the "big nasties" always makes them feel smaller and more manageable.

11 comments:

Carrie said...

Thank you for writing this post. There is so much wisdom here and so much that needs to be said. The most disturbing thing, to me, about the increase in obesity in our country is the suffering it causes. I don't think most people who aren't going through it realize how much suffering there is, and I deeply appreciate you sharing your experience.

With the predominance of obesity in my husband's family, I have often wondered why doctors don't take it more seriously. I mean -- and I'm not telling you anything you don't know here -- obesity kills people. My very obese father in law recently started having blood pressure trouble, and it scares the crap out of me. When we recently applied for life insurance, and Epu was quoted at the very bottom of the "preferred class" because of his BMI (which is just on the overweight side of the obese/overweight divide) that upset me too. Like, the insurance company doesn't think it's a good bet that my husband will live 20 years? Then why is it when I've sent him off to the doctor to talk about his weight problem, he gets the, "well, eat less, exercise more" and a shrug? If he was a heroin addict, the doctor wouldn't have dismissed him with a "well, take less drugs" shrug.

Anonymous said...

Kori, you are a beautiful person and I'm sorry you're going through this. Being in pain is really, really hard even when you know what the cure and timetable are; I can't imagine how hard it is when you don't know when or even if it will go away.

-Kimberlee

Nicole said...

We know (from our fab msloc coursework) that the role of support is critical to any change. I hope you feel the support from all the people, like me, who find you amazing and who can understand this 'big nasty'. Thanks for sharing your words with us--you have such a gift.

Anonymous said...

Kori, I love you. I am so glad God put you in my life as my friend. I love your sense of humor, your super-ability to understand the sufferings of others, your intelligence, your love of your family, and how great of a friend you've been to me.

Isn't it baffling how in the dark we are about our own path when God who loves us, and knows exactly all that will happen and how He will use it for our good...isn't it BAFFLING that He doesn't fill us in on the plan??!! I suppose it is meant for us to rely on Him more, but sometimes it just feels cruel. Thank heaven that Jesus suffered...we know that He gets it.
Wish I had all the answers. I miss you,
Kathleen W.

Jimmy, Shannon & Annie said...

Hey Kori - I really enjoy your posts, the stories you share about Ellerie are so cute, but I wanted to say thanks for writing your most recent post.

My younger brother suffers from obesity. He has struggled with it since we were young. Not only have doctors not understood the pain he goes though, but our own parents have often been less than understanding. It is very hard because he has tried so many things and there doesn't seem to be an answer. It has affected his health, grades, job, relationships, ...everything.

As another commenter said... your post has so much wisdom. I hope you don't mind, which is why I shared it with my brother. He is a man of few words, but he did say that your post made him feel less burdened by his obesity - as he has always felt that *he* was doing something wrong. So, I just wanted to say, hang in there - you are awesome for writing the post as it really did help someone.

You are such a wonderful person - and although I don't know you well, you are someone that always makes me happy when you are around and I wished I could know better... :).

We should have our daughters play more together!

- Shannon

Need More Moxie said...

I'm so glad everyone else has already covered these points:
You have so much wisdom, you are a beautiful person, you are a gift to humankind, everyone who knows you loves you.

I'm not sure I could have said the same thing so eliquently.
I was going to attempt a joke here but I couldn't get it quite right.

Feeling alone, when you really aren't alone, really sucks you know? Really!
Seriously, I understand this feeling very well. I also understand the feeling of having doctors continually blow you off, not listen, operate when it's not necessary, and give you crap advice so they can get on with the rest of their day and make it to the dinner table by 6.
There are doctors out there that do take obesity very seriously. We just have to find them for you in Chicago.
Most intelligent people know what their problems are, they just don't know how to fix them.
Extra hugs and love to you

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Need More Moxie said...
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Kelly said...

Sending you a big hug from Baltimore, Kori. I can tell that you are hurting so deeply, and I'm terribly sorry to hear that. I can relate to a lot of what you said, having struggled with my weight also from about the age of 10 or so (onset of puberty). Be good to yourself, and hang in there.

Ashley said...

Kori,
I agree with these ladies. Thank you for your words. I and my family are all in the same boat. I don't dare count the number of doctors that pointed me to different fad diets and the books to go along with them.
Two years ago I started working out at a local gym with a trainer and mangaged to loose a good amount of weight. I thought I had found someone who understood and was happy to work with me in the specific ways I needed and that I had finally found an answer. It pains me to say that she was just excited to have a client that lost a lot of weight. Once I hit a plateu (bouncing back and forth 10 lbs at a still obese weight) she became disinterested. Now I find myself almost up to the same weight I started.
Ok, I reread that and I know it doesn't sound particularly like I meant it to, but my point is that even though diet and exercise did something for me for a while in the end it isn't the final answer. I believe that you are totally right in saying that it's not all about the diet and exercise. There is a lot to be said for that something that makes it so hard for so many of us, not to mention how our bodies respond. I don't think it has anything to do with being lazy or a "pig", it is something serious that so many of us deal with.
Here's to hoping that someone will discover and underlying cause and a way to help maintain a disease-free (or at least controlled) life.

Again, thank you for putting it all out there and helping your readers see that we are not the only ones.

Sara said...

Thank you for having the courage to write about this. Sending you many well wishes...