Finding My True Hope: My Adventures at Stanford Medicine X

This is the fourth of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, we're like a computer virus, really. We will never stop until we've re-written it all.  

Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... 

Though, when you have lost someone you love to chronic illness, I don't think you have much of a choice in what your voice will be. If you've worn gloves to help prevent infection for your father's in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey. 

This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY. 

So, I don't want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing? 

Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or refute, and to make a point. And for as much as I love other conferences, you're not going to find that at a TED talk. 

You don't need anyone to talk AT you -- you're an adult, and not a child. You're a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldn't even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Fox's now famous 'That's my research, and that's not how I chose to interpret my data,' to your regular advocate questioning potential 'overquantification' and privacy issues, to well, my now famous 'comment.' 

Medicine X is not a place for people to be 'perfect' -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a 'bad' reflection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to... 

Day 3: The Doctors of Tomorrow... Today 

"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.

One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.

Yes, that's right. 

Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)

In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isn't just that... It's a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various 'hats,' who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. That's all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-) 

And it was so much fun! 

There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, that's the beauty of technology, right? I learned about some of them through people's tweets, or through people's blogs... or through videos. Couldn't have done that as efficiently in 2002. 

My mind was refreshed and renewed with the beauty of other people's minds, and ideas... and it will be, for years to come, thanks to livestream. (If you haven't caught on, I have linked every "Day" subheading" to it's corresponding livestream link.) 

I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X --  and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didn't fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system. 

It'll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. It's inevitable. 

... And in case you want to know, the speaker who I addressed with my little 'comment' was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.) 

So... if I had to sum up my time at Med X, I could tell you that: 

• I was a lost villager... 
• Who found herself accepted for her self quantification... 
• And hence, found her patient voice and courage, 
• Leading to a true HOPE in her advocacy efforts.

I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My 'life at Med X observations,' if you would.  

I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.

I will not... not ever... not soon. Never forget. ;-) 

Diabetic Humble Pie

It was Wednesday at 2 AM, and I couldn't sleep. I stared at the walls intently as if they held hidden messages for me; my own hieroglyphs to decipher. Suddenly, just like an omen in a bad movie, the soft light that usually bathes the bedroom's walls was gone; complete blackness engulfed everything. Five minutes later, there was light, alright... Lightning and thunder made their explosive way into the picture. The stuff usually soothes, and helps me sleep, but that wasn't going to be the case on this morning. This morning I had to rise early, and walk to work... and it was going to be a very interesting, and very wet, walk to work.

And I can't begin to tell you just how interesting. 

Let's just say I completely underestimated the situation, and thought it was just... well... an annoying moment of rain, and some fading thunder. At 4 am, though, let's just also say that some things are better left unseen. 

Most of the homes on my city's main avenue are small, and unimpressive. Not a blight, by any means, but just average homes that probably serve as 'first homes' to many newlyweds, or even some retired folks. They don't really have much in the way of yards, trees, or shrubbery, but I got to see a few fallen branches here and there, and that's common out here in Iowa during some of our Spring storms. No biggie. 

But then, you hit a slight bend up the road... and the homes become bigger, 'stately', and with sprawling large front lawns, gardens, and trees. You might even see a posh car or two, parked on a driveway; testament to how much someone, somewhere, makes. And this is where the horror began. 

Have you ever seen a a tree trunk that's, maybe, a few feet wide, in diameter? Yes? Now, have you ever seen it BENT IN HALF, like the bending of a simple tulip stem; like a Twizzler... Like it was made of rubber? Well, at this point in my walk, very MANY of the trees were in this state.

I got quite scared. The city sirens never rang that morning, and no warnings or advisories were in effect for my county. But I know quite well a few of you KNOW what this represents. Unless the Jolly Green Giant's bratty son was out and about, or Godzilla, for that matter... the only two things I know that can do this to such large trees are tornadoes, and hurricanes. And we don't have hurricanes up in the northern Midwest. 

I really didn't know if this was still happening in the vicinity... I sure didn't hear anything in the way of a "freight train" noise. But by then, I was closer to work than to home, so I tried to finish the journey as quickly as possible, and get out of harm's way. Stupid? Maybe. Later, in the papers, experts were looking into whether a tornado 'potentially' touched down in Ames. Well, you sure could've fooled me. :/ 

I was very scared, and when I get scared... I tend to get angry at the impotence of the situation. Scared of being alone, scared I have nothing to rely on to save my own behind, and very angry. I don't know why... like what could I do? Slap the sky? I guess I just want life to happen smoothly, sometimes, and not scare the crap out of me. Not force me into confrontations, or situations I don't want. I JUST WANTED TO DO WHAT I HAD PLANNED - GET TO WORK! 

But life seldom cares what we want, and we have to roll with it...

So we come to Friday, at the second job. I worked an 11-5 pm shift, and I'd been sick with a stomach virus for a few days. Really, foolish or not, I didn't have much in my stomach at that moment; I was just too scared I couldn't keep any of it down. 

Lunch rush starts at this Mexican restaurant, and I'm quickly into the groove of things, making order after order after order. It's okay...! I'm in my element! Things are going awesome... 

And then, without notice, the floor was made of lava, and I was in a movie, and people were watching me. And I was making those burritos... on a compartment, atop a roller coaster ride, and trying to hold on soooo hard to the railing. I think I thought the burritos were the railing, at one point. Everything was funny, and sooo not funny, at the same time. I got scared, and very angry.

I wanted to stop, but there was no one else there. I'm pretty knew, so people don't really know much about what I need, or don't need, and frankly... I only work a few hours, part time. I guess I foolishly thought I could get away with it. I *knew* that I was having a quite sudden, and quite low, LOW. But I couldn't stop.

"I can finish this lunch rush," I say to myself... I can. By the time rush was done, I'm sure some of my folding, and wrapping, looked as mangled as those trees on my main avenue. I was so sick feeling, and so scared... Like a person drowning, and their head rising in and out of the water. Where the hell are the jellybeans? I quickly announced I'm going on break -- whether people like it or not -- and NO ONE refused. They must've seen something in my eyes, and wisened up. 

Funny, the place is typically crawling in ho-hos, twinkies, and jelly beans... and not a damn piece of sugar was in sight. 

Luckily, I ate through 3 pieces of candy I had in my pocket (too scared to go down the greasy, steep steps to the basement, and find my purse, and get the meter and the glucose tabs), and a cup of regular soda... 30 minutes later things seemed to improve. My break was only 15. 

I will have to ask if I can keep things upstairs -- we can't really keep personal things, nor food, in the work areas. But it's going to have to be... an uncomfortable conversation. I just don't like to bring it up.

ALL I WANTED WAS TO DO MY JOB, AND FINISH, AND GO HOME. 

In the end, I took a detour through Alice's Wonderland of Diabetic Crap, and finished with a terrible headache... and NOT from the magic mushrooms. :/ 

I hate Diabetes. *&^%#! Diabetes.

Lesson: We can't exactly plan for every situation, in life. Who the heck knows when a tornado's going to come in, and rip through your lunch rush, at work... BUT we must be willing to reach out to others, and identify safe beacons along the way. Don't hurt yourself because you want to be tough, and stubborn, and stupid. Just don't. It's so not worth it... 

"One order of diabetic humble pie, please. For here." 

Diabetes and Anger -- Is There a Deeper Connection?

Two years ago, I wrote a blog post about diabetes and anger. In that post, I explored a lot of the day to day reasons why a person with diabetes might feel anger, and frustration. In fact, there are many reasons why a person with diabetes would, indeed, become angry. Those reasons can be varied, including anger at oneself for 'failing' to prevent the disease, to anger at family for not understanding or patrolling/policing the person with diabetes' behavior, etc. These are common types of anger: the anger that results from struggling to cope with a new and changing environment, for which we might have little control. (You can check out that blog post link, above, for a more in depth look at that topic.)

However, little did I realize that I was going to get such a huge response from the public -- but not about anger in this usual, common sense -- but anger in the chronic and mental health sense. Folks from all over the country have poured out their hearts to me in sheer frustration and worry over their loved ones, from sons to spouses, to friends. From lay people, to mental health professionals as well.

I must emphasize here, that I am NOT a mental health professional. I am not a medical expert of any kind, or a scientist. I am just a person with diabetes, with a blog. A person who loves learning every day, researching my own condition, and learning how to live and cope with it. Anything I say here is information you must take to your own clinician, or consult with your own mental health professional. It is also information that anyone can research on their own: never take my word for anything. Always be a skeptic.

Now that we have gotten that out of the way, let's start with the ways in which diabetes can clinically affect our moods.

Day to Day Blood Glucose Swings

When our blood sugars are not within normal or euglycemic boundaries (i.e., between 70-120 mg/dL, or 3.9-6.7 mmol/L), our mood and emotions will be altered. In some extreme cases, a person who, for example, experiences severe low blood sugar may become angry and even combative, or violent, or may seem 'drunk.' A person who experiences high blood sugar may experience sadness and depression, inability to concentrate, fatigue, etc. The root of all these glucose related mood swings has to deal with their association with the neurotransmitters in our brains, and how those in turn, communicate messages to our nerve cells about mood, appetite, and even sleep. Dealing with these states of mind is challenging, and can be tiring for the person with diabetes, as well as bring on a short temper. To top it off, having a negative disposition may also bring on bad blood glucose numbers, creating a vicious cycle that feeds off itself.

Chronic Mood Swings

The problem with being on this persistent 'roller coaster' of high and low blood glucose swings is that it can be bring about permanent, and chronic, mental health problems. Problems such as clinical depression, anxiety, anger, and a whole host of mental health conditions, like bipolar disorder.

According to a study on "Diabetes and Psychiatric Disorders," by the Indian Journal of Endocrinology and Metabolism, "Diabetes and psychiatric disorders share a bidirectional association -- both influencing each other in multiple ways." So much so, that apparently scientists back in the late 1800s found diabetes to be a disease which had been present in families with a pronounced history of mental health problems, so that insulin shock therapy was used as a treatment for mental health disorders even as shortly as insulin was isolated for the first time.  (Yes, insulin has a role in mental health, and even in the development of such diseases as Alzheimer's.)

This study further points out that there are several ways in which both diabetes and mental health problems can show up:

• As two parallel conditions, which developed independently of each other, with no apparent connection;
• As a complication of the diabetes, or as a complication of the mental health problem: type 2 diabetes may lead to depression, as well as depression may lead to type 2 diabetes, for example;
• As a product of hypoglycemia or hyperglycemia (and ketoacidosis), such as the development of chronic anxiety;
• And as a result of taking various medications for treating mental health -- many of these medications can lead to a triggering of a type 2 diabetes diagnosis. 

In my personal and anecdotal experience, I am a person who suffers from dysthymia. Dysthymia is a type of low grade, long term depression, which can subside and be in the background, for much of one's life. It is much milder than regular depression. However, in situations in which I have had an undiagnosed, and chronic health condition, such as hypothyroidism, or type 2 diabetes -- the imbalances in health provoked episodes of severe depression. The conditions influenced my depression and worsened it. In this way, uncontrolled diabetes can worsen or complicate a mental health condition that is already present, making overcoming of both conditions a challenge. 

It could very well be that the sudden and deep mood changes many persons with diabetes have experienced were the result of these drastic, and long term changes in blood glucose influencing an already underlying mental health problem -- especially if the diabetes was left undiagnosed or untreated for an extended period of time. It is particularly difficult for a person with diabetes that is weighed down by these mood changes, to find the motivation and positive inclination to manage their health condition. Quality of life tends to be reduced, and so does optimism, which can lead to development of unsavory habits, such as uncontrolled diet, smoking and drinking -- habits which can exacerbate mental health problems and lack of control, to an already breaking point. 

How Do We Help? 

In my previous blog post on anger, I noted several ways in which we could be of support to a person who was being burdened every day by the management of their diabetes. Being a good listener, helping a person cook meals, and being empathetic, are all proper ways in which we can deal with a loved one's chronic health condition. The Behavioral Diabetes Institute provides resources for us to utilize when we are overcome by our day to day emotions when managing diabetes, and may feel burnt out, or depressed. 

However, there are situations in which we need to be more proactive in identifying the mental state of our loved ones. Understand that, outside of a rare and severe hypoglycemic event, violent and aggressive behaviors are NOT standard complications of diabetes. These are not typical or normal behaviors for a person with diabetes. (Grouchiness is.) If a person you love is experiencing warning signs of serious mental health problems, you might need to have a conversation with them about visiting a mental health professional. This is an intimidating task, and there are suggestions out there, on how to broach the subject. 

The National Alliance on Mental Illness (NAMI) has a good Resource Guide for Families Dealing with Mental Illness. In it, they address what to do for 'crisis intervention,' when a person's behavior is particularly violent, or out of control:

If the individual with mental illness is in danger of physical injury, if his or her behavior is out of control or others are in danger, it is important to know what steps to take. Plan ahead by locating available sources for help: your emergency phone number (911), police or sheriff department number, Community Mental Health crisis or emergency number, name and phone number of a mental health professional, friends or neighbors who may be of help, and the nearest NAMI affiliate. Keep these numbers posted by the telephone. 

Any behavior such as this, that falls outside of both a mental health disorder, or a severe hypoglycemic episode, is unjustified violence, and should never be tolerated. Do not put up with it. 

. . .

Mood swings can be a standard part of diabetes mellitus and its attendant blood glucose fluctuations. However, when chronically unregulated, these blood glucose fluctuations can bring about more serious mood disorders. These mood disorders are NOT a standard symptom of day to day diabetes management, and will usually not ameliorate on their own. If you are living with a person who has become unpredictable, or violent, due to a potential mental health disorder, please seek help from your local community mental health centers, a mental health professional, or from your family physician.

You Never Want to Feel That Kind of Panic When You Have No Insurance

This isn't exactly what I wanted to write about, tonight. I'm not exactly an "on-schedule" blogger, but I know this is definitely not what I was expecting to write about, tonight.

[Before I proceed, though... I just want to say that I don't want ANY pity. No pity... No feeling sorry for me... No hurting for my circumstances. No advice on what I could have done better (I will rip you a new one, if you do, just be forewarned). Life is what it is, and we are all dealt... what we are dealt, sometimes. Whatever that is. There are people, right now, going through a LOT more difficult circumstances. They deserve our support... so don't you worry about me. Also, this post might have a lot of swearing.]

I just need to process, and I need to vent. So to heck with it.

... Where do I start, I don't know. It's such a blur,  now.

Last Sunday.

Last Sunday, running my hands through my hair, while wanting to put it up in a clasp, I found a large, swollen lump or area on the upper right side above the nape of my neck. It wasn't entirely dissimilar to the one on my left side, but distinctly swollen feeling, and sore if one put gentle pressure on it... and irradiating discomfort.

Of course, being The Angry Type 2 Diabetic that I am, I freaked out... said a few choice phrases rhyming with "What the fructose??" and sort of felt the clammy feel of panic rising up my spine. (You never want to feel that kind of panic when you have no insurance.)

I decided, though... that I was going to remain calm. (HA!) Just monitor it for the week, and wait until Thursday (today), for the Free Clinic, to get it checked out. As things sometimes go, I started feeling... unwell.  "Woozy," feverish... just uncomfortable from the growing pressure in that area of my head... The "soreness" was starting to radiate down to my right shoulder, down my neck... And today, well, it was just difficult to focus, at work, and I noticed I couldn't really walk a good distance without feeling... just weird. Light-headed. Nauseated. "It's okay, though," I thought... "Today is the Free Clinic, and they'll have a look at it."

Now, the Free Clinic in my town is basically a rat pack of some medical professionals of various ilks who volunteer to provide some basic/minimal health care to uninsured people, no questions asked, and which only generally meets on Thursday evenings, from 6-8 pm. You have to arrive at 4 pm, though, and make quite the long line. Waiting for care often averages between 4-6 hours... and it's first come first served, of course. They can only see about 15 people.

The problem is... they used to have a somewhat permanent building, which has since been torn down by their tenant -- the next door church, while they make some new additions and changes to their facilities. So, the Free Clinic now has to share space with the next door church, and can only meet whenever the heck the church is not having some event. Which basically means... whenever a magic 8-ball decides.

I walk out there... just praying, praying under my breath that they are meeting. Lo and behold, as Murphy's Law loves me so much... They are not meeting. I think it's because of some stupid Pancake Day crap. I don't know. (Insert your personal sensibilities approved curses here.)

Then you have to make the tough decisions. Is this something that you think will go away; get better on its own? Am I overreacting? Is this... something that... could potentially get worse very quickly, and kill someone? Is this something that can be stopped, but it just needs immediate attention? I don't know... Do I go to the ER (because the local medical clinic is closed... and, even if it was open, they won't see me because I have no insurance and a hefty past medical bill that I can't prioritize to pay right now (don't judge me... you don't know me... and they won't let me pay anything less than an outrageous amount, every month...), while so underemployed and on food stamps...)? Or do I chance it?

Reluctantly, I decide... I'm going to go to the ER. I don't want to be the freak on tomorrow's front cover story that died within days, from something simple, or who knows what. The worst they can do is turn me away. And I was wrong. The worst they can do is shame me, while turning me away.

The doctor didn't even really look, or touch the area much. He basically pushed my hair around, said it looked exactly like the left side of my head, that he didn't see any physical injuries, and then asked have I ever cared to examine the left side of my head...

(Yes, doctor, the rest of us who aren't doctors are certainly idiots... We go entire lifetimes NOT touching our own bodies.)

....and then proceeded to tell me it was probably just me being worried about it, or at the very most a resented lymph node. He dismissed my other symptoms with the wave of a hand, gave me a smirk and a suppressed laugh, and said that I need to just let it stay like that, and come back in a week if it got much worse (with big disbelief all over his face).

I tried, very unsuccessfully to get his attention. He just basically acted like I was bullshitting him, and walked off.

Nurse Patronizer walks in. Nurse Patronizer notices I'm quite angry. I don't recall whatever tipped it off... (pffft!) But... Nurse Patronizer says to me "I don't know what you two discussed," and boy do I let the flood gates go... and I start crying, right there. She begs me to give her 5 minutes and goes off, basically to talk to Full of Himself Doctor, who says "Oh, she needs to just watch the area for 2 or 3 days (yeah, rather than a week, like he had said before... hmmm)..."

Nurse Patronizer repeated over and over again how it wasn't that I had no insurance, while at the same time pushing a flyer on me to go to the Free Clinic tonight.... After I had spent a good chunk of time explaining to them that the Free Clinic was closed. They wouldn't believe me, and kept asking me *why* it was closed. Now how in the &#$@ should *I* know?! All they had was a sign posted about "We will have No Free Clinic Tonight, 03/01/2012." I'm not their schedule keepers!

So, really... hmmm... If you are not punishing me for not having insurance, then perhaps you were punishing me for your perceived notion that I'm using the ER as a PCP provider's office, and not waiting until whenever the heck THEY would have given me an appointment (should I had been able to get one, which I know from experience, that I would have not, because of my outstanding bill. I know how those jerks work, too.)

So, off they sent me... With apparently, a few "lessons" for the road:

• You've lived with your body for 35 years... and are quite educated, Liz, but you don't know your own head;
• You have no insurance, and are underemployed, so you must be subhuman, or some mentally unstable person making stuff up... abusing our services;
• You are nothing more than money;
• I hope you don't die, but good luck. Suck it up, butter cup.

And THAT is the reality uninsured people have to put with... in America. 

I am, at home, and still feel... Odd... Feverish. Sick.

Off and on, it goes. I feel even more special I will get a nice, hefty bill in the mail, for absolutely nothing. For the theater of a man's arrogance, and a woman's patronizing. I've had more pleasant experiences there, before, but not today. 

Not today. 

When Ostracizing Type 2 Diabetes Became an Accepted Lifestyle...

When it comes to Diabetes, and the messages being put out there in the media, it is really hard for myself and other folks not to become angry -- if not downright furious. I have to tell you, I generally look through articles, and skim through different headlines, and just tend to "cherry pick" what's going to be real news, and ignore and pass over the fluff. If I were to read it all, I might be en route to a heart attack in less time than you can say "duck fiabetes."

But on Wednesday, just having gotten home from a long, physically and mentally exhausting shift at work, I failed to listen to my own advise. A dear friend of mine shared a news article, in my "Living with Diabetes" Facebook group... and I just lost it. I don't think I have ever been so outraged by an article before. (Well, except maybe for Wendell Fowler's abusive tirade against little Type 1 Diabetic children having ice cream. OMG, how dare they! That's almost as dangerous as Paula Deen having a cheeseburger! *snark, snark*) I was seeing so many shades of red, and purple, I just could not think straight. I said a bunch of things, in my group, about the article, and to my husband... went and kicked a few things around... flipped off Dr Oz on the TV... and then I felt like my head was going to explode. It was just too much.

Having taken at least, a few days, to calm down... I can probably now tell you what I really think about this piece, with a little more perspective. The piece is called "Curing Diabetes: How Type 2 Became an Accepted Lifestyle" (Yes, you are reading right... That IS the headline for this article), and it was written for The Atlantic, by reporter John-Manuel Andriote, who has supposedly been specializing in HIV/AIDS reporting since 1986. I guess, I would like to think that being exposed to such a world would have given Mr. Andriote some perspective, and a keener sense of tact, and to an extent it has... but, apparently, not enough to have helped him rethink such a terrible headline.

The article itself makes a few key mistakes, which well, to an outsider would not be as self evident. And why would they? Our current government, medical advisory agencies, and medical industry want to do all they can to pass blame onto the Type 2 patient, entirely, and take on NO responsibility themselves. I've shared on this, before, many times. Especially, the deep denial of how multi-faceted the triggers are for Type 2 Diabetes, and the roles pollution and other medications, etc., have in the development of the disease. It is unfortunate that everyone in the industry quotes such poorly done research studies that do not take these complexities into account, or even consider to do so, to blanket claim that 80% of all Type 2 Diabetes is "largely preventable." These simplistic allegations lead to discrimination, misunderstanding of a very complex disease, denial of health management resources and tools by the insurance industry, and uneducated reporting that often leads to societal abuse, bullying, and further discrimination.

Still, there is some good, among the bad, to be found in this article. I do feel that, had the author taken some time to meet with members of the diabetic online community, this article could have really shed some light more adequately, on a lot of issues that affect our community, without contributing so much to the problems it so tries to 'address.'


The Good in this Article: 

• Right off the bat, the article addresses the issue that the medical industry does not like to discuss with patients, or at least seldom does, the idea that they can manage their diabetes without medications, much less what Diabetes even IS. This is, indeed, a struggle we have right now. But it is a deep, and complex problem involving a lot of ethical concerns which affect almost every aspect of the health industry, including the American Diabetes Association itself (it's probably not an accident that they recommend diabetics keep their blood glucose levels at or below 180 mg/dL -- a very high, and potentially long term dangerous, blood glucose level), as well as other diabetes medical guideline agencies. The fact is, many medical professionals receive kick backs and incentives from the pharmaceutical industry -- large kickbacks and benefits -- and it's in their pocketbook's best interests to keep as many of their patients taking certain medications. This is not something exclusive to the diabetes industry, though. I am sure this is one of the prime reasons why there are now, commercials on mainstream media, for prescription only medications. It's BIG business, and there's no better salesman out there than your doctor. 
• Andriote does some thinking outside the box, which is helpful: Chronic illness, particularly obesity and diabetes, are multi-faceted diseases which do not have just one contributing factor to them (though at times he seems to suggest they do) and thus, will need a multi-sector response. He speaks about our sedentary jobs, and a poor transit system, and the lure of the food industry, and how addicting high fat/high sugar/high salt/food combinations can be... and the supposed "myth" that healthy foods cost more than unhealthy foods. He even quotes an article from someone who supposedly "destroyed" this myth. What is perhaps not understood by people who claim that healthy food is cheaper than fast food is that most dedicated Type 2 diabetics don't consider healthy food what they consider healthy food, and they have to cut back on carbohydrates in order to control blood glucose, and not rely solely on their medications for control. I'd like to see Andriote actually trying to live a lower carbohydrate lifestyle, at a grocery store, with a maximum of $350 for 2 people, for a month worth of groceries, and not being able to eat as many starches, grains, and other foods which ARE the cheaper foods, for their value and how far they go. Living on lean proteins, and veggies, and cutting back on all those starches and breads, and grains is NOT cheap. Also, per the fast food cost example he uses, if one assumes poor people buy value meals at fast food joints to feed all of their family members, one might be very, very naive: there is such a thing as a dollar menu, or less, at these places... And people KNOW this. How can you beat $2 for two double cheeseburgers at McDonald's??? It costs me $2.88 a lb alone, for chicken! (And it's cheaper in Iowa, than in many places...) 
• Andriote talks about the need for balance in media industry reporting (Surprisingly): On the one hand, you don't want people dismissing diabetes as 'not serious' enough, but on the other, you don't want to create a public backlash for patients. "When the media do focus on type 2 diabetes, said Sarah Gollust, assistant professor at the University of Minnesota School of Public Health, they give twice as much coverage to the behavioral risks for it than any of the other factors that contribute. But this over-emphasis on personal responsibility tends to blame and stigmatize people with type 2 diabetes or who are obese. Those living with the disease may feel it's their fault if they can't always maintain the ideal blood sugar level. Worst of all, said Gollust, public support could erode as people are expected to cover the costs, however they can, of a medical condition it's believed they brought on themselves ... Public support for addressing diabetes is imperative when you consider the tremendous amount of money it costs to manage the disease." This is a very important reality that we, as Type 2 Diabetes patients face as we strive to manage this disease. We NEED support, and we can't succeed without it. However, many of the undercutting remarks Andriote makes, including his headline, are FAR from being fair and balanced, and certainly not supportive! On page 2, Andriote has a "listing" of facts, and goes on to say that "Although there is a genetic predisposition for type 2 diabetes, the vast number of cases are the outcome of poor diet, obesity, and a sedentary lifestyle." Of course, this is contradictory... because ALL cases are of genetic predisposition. If not, then ALL obese persons would have diabetes -- and this is simply not the case. (I won't even go into his usage of the phrase "people of color" to talk about African-Americans, Latinos, and other minorities...) 

The Bad in this Article: 

• Andriote, sort of, implies that most Type 2 Diabetics could manage their condition without the need for medications, if they just try a little hard, and then they would be cured. There is a BIG disconnect in here: 
• For one -- he fails to realize that by the time the average person is diagnosed with Type 2 Diabetes, their disease is so advanced, they have lost nearly 40-80% of their beta cell function, making it extremely challenging to near impossible to control blood glucose levels without the assistance of oral medications, or insulin. Again, being the multi-faceted disease that it is, diabetes NEEDS a more aggressive and aware medical community, as well as increasing efforts in continuous education FOR the medical professionals, as well as patients. A medical professional who cannot think diabetes, and catch all the symptoms and markers of diabetes, in an age when it's being considered as an "epidemic," is a medical professional who will endanger lives, and contribute to the rising costs of the disease when it comes to complications that are not being caught on time. 
• Secondly -- The kind of lifestyle changes to achieve true remission and euglycemia, are a lot more stringent than what the ADA might tout. You *cannot* reach euglycemia -- true euglycemia -- while thinking that blood glucose numbers below 180 mg/dL are normal. True euglycemia are levels that are below 140 mg/dL or lower, after 2 hours of eating, and in fact, rarely exceed that. In fact, some might even say below 120 mg/dL at 2 hours, or less. Not everyone can achieve those levels -- especially, if they struggle with hypoglycemia, or  have other health related dietary considerations to make that might not allow them to easily cut back on carbohydrates, or increase certain levels of exercise, etc. I, for example, have to consume 80-100 grams of carbohydrate a day, at a MAXIMUM, in order to maintain my euglycemia. This is unrealistic to many people... and it's not a character flaw! It is HARD, often unrealistic, work. 
• Thirdly, he goes on to claim that if folks worked hard at it, they could "cure themselves," and he uses an opinion paper, mind you, to try to back up his assertions. He even goes as far as claiming that this is the opinion of the American Diabetes Association (ADA), by claiming that the ADA says that "maintaining normal blood sugar without medication for at least a year could be considered a "complete remission,"" when in fact, the ADA specifically highlights a the end of the second paragraph, in that same opinion paper that "The opinions and recommendations expressed herein are those of the authors and not the official position of the American Diabetes Association." Moreover, the panel of those expressing their opinions recognized that they had clear conflicts of interest in the matter, and also, found it difficult to reach consensus considering the wide arrange of questions to be considered. The group does, though, make a very telling distinction between a cure, and a remission... which the author of this article seems to gloss over, quite nicely, to what he could take out of context, and better fit into his piece: "Medically, cure may be defined as restoration to good health, while remission is defined as abatement or disappearance of the signs and symptoms of a disease (3). Implicit in the latter is the possibility of recurrence of the disease. Many clinicians consider true cure to be limited to acute diseases. Infectious diseases could be seen as a model: acute bacterial pneumonia can be cured with antibiotics, but HIV infection, currently, can at best be stated to be in remission or converted to a chronic disease. The consensus group considered the history of childhood acute lymphoblastic leukemia, which evolved from a uniformly fatal disease to one that could be put into remission to one that can now often be considered cured (4). Conversely, chronic myelocytic leukemia is now considered to be in prolonged remission, but not cured, with therapies such as imatinib ... For a chronic illness such as diabetes, it may be more accurate to use the term remission than cure. Current or potential future therapies for type 1 or type 2 diabetes will likely always leave patients at risk for relapse, given underlying pathophysiologic abnormalities and/or genetic predisposition. However, terminology such as “prolonged remission” is probably less satisfactory to patients than use of the more hopeful and definitive term “cure” after some period of time has elapsed. Additionally, if cure means remission that lasts for a lifetime, then by definition a patient could never be considered cured while still alive. Hence, it may make sense operationally to consider prolonged remission of diabetes essentially equivalent to cure. This is analogous to certain cancers, where cure is defined as complete remission of sufficient duration that the future risk of recurrence is felt to be very low."

You see, it is one thing to call something a "cure," because it is more hopeful, and more satisfactory to a patient... than for that to be, actually, a cure. The likelihood might be low, but it is, in fact, not a cure. As a comparison to HIV made above, for example, people like Magic Johnson have had their HIV infection in remission for years, but would would we say that he's cured? Not in a million years. Just because I can't "infect you" with diabetes does not mean I'm cured. This debate among colleagues does not equate to something actually being "officially" considered a cure. Obviously, operationally, we cannot treat presently uncontrolled diabetes in the same way as diabetes in tight control, or in remission... So DUH, it can be "operationally" a cure, but not in truth. Remission is remission. A cure, is a cure. This is truly, irresponsible journaling at it's best. 

I would add that the amount of mental focus that is required in maintaining diet, food carbohydrate counts, exercise, and meal planning often borders on obsessive and unhealthy, and ends in many an eating disorder for many diabetes patients. The psychological ramifications of attaining euglycemia, at all costs, for many... have NOT been assessed, and yet, they are just as much a part of the disease as hyperglycemia and other markers. Diabetes is NOT just a disease of high blood glucose!  

• The author uses statistical scare tactics to put the fear of God in you: But he does not put them in perspective. It's one thing to discuss how the rate of diabetes will triple, or double, or whatever. It's quite another to not discuss the rate of population growth, right along with that. Obviously, people ARE reproducing, and diabetes isn't just happening in a vacuum where the rate is growing by leaps and bounds larger than what it is. It's hard to say, because what will the population be in 2050? Our population is EXPLODING to what are potentially unsustainable levels, and of course, that's going to make numbers for any disease seem scary high, without some perspective. What would the rate be in RELATION to total population at that time? THAT is what the question should truly be... In addition, the author wrongly states that the prevalence of obesity has been increasing, year after year, when the prevalence of obesity has remained STEADY for the last 12 years.  Could it change, tomorrow? Sure... but for now, I think we can say many folks are starting to be more conscious of obesity, and their health, even if they might not see themselves as 'overweight.' Andriote fails to keep balance in the picture he's trying to paint.
• While Andriote wants to instill a sense of seriousness to diabetes, while claiming we need support, he attacks commercials with friendly faces and role models, claiming that persons who are fit, or joggers, or younger folks -- are not what most Type 2 Diabetics are like. Perhaps not (some) newly diagnosed Type 2 Diabetics, but is it wrong to have positive role models to aspire to? Is it wrong to see that some of us HAVE made changes, and CAN live a healthful life? Is it wrong for me to see another 35 year old I can relate to, on the tv? I fail to see just what he wants to accomplish, here. Does he want a fat, old Joe, sitting on a sofa, not able to move, and popping pills, or doing 'leg exercises' from a chair, because he can't move? Would THAT be more appropriate? Or perhaps, he wants people with their limbs amputated, like the city of New York's shocking diabetes ad campaign? I'm not sure what's the alternative he's looking for, here, and what's running through his mind. 

Of course, I can't end without discussing... that headline. "Curing Diabetes: How Type 2 Became an Accepted Lifestyle" ... I'm guessing he's trying to say most people just "accept" and take the diagnosis as a given, that they will need to live with this disease, forever... and take pills forever. But boy, is it an uneducated headline. Yes, people can live pill free, for a while... and depending WHEN they were diagnosed, if it was late in life -- maybe they might never have to take any meds, ever. But no, it's not a cure. Type 2 Diabetes IS a progressive illness, and the likelihood of a need for medications increases with the LENGTH of time we've had this disease -- and not exactly with how well we've taken care of it. Time goes by, and not in vain... our bodies DO age. Things break down. My father was in remission for years, yet he was never cured; diabetes still progressed, and still took his life. It happens.

Diabetes is not an "accepted lifestyle" anyone chose, anymore than people who got AIDS or HIV (by whatever method), CHOSE that as their lifestyle. I bet you $1,000,000 that this author would NEVER dream of writing "Curing HIV: How HIV Became an Accepted Lifestyle," merely because he read an opinion piece on how one can keep HIV in remission for YEARS. The headline even seems to sort of imply that we "coddle" people into being lazy about their care, and lazy about "curing themselves," so that we don't need to support them. It's not a disease, if you would, it's a "lifestyle." Yes, because Type 2 Diabetes is sooooooo glamorous. It's the lifestyle of the fat, and sloppy, and just give me my Metformin, over here. I'll take it with a side of that value meal, please. 

Sadly, Andriote could have done SO MUCH to advocate and help our community, but instead he chose the low road of blame, and veiled vitriol in between his lines. How someone who has written for the AIDS community can be so close minded about the needs of another equally ostracized community is BEYOND me.