This might seem silly... I know. I know I don't have to try hard, or go far, to ask my readers to imagine for a moment being a person with diabetes. (Naw... You don't say!) ?

But still...! Imagine, for a moment that you're a person living with diabetes, and have lived with it for many, many years... Imagine it's been challenging. You've gone through many phases of burn out, and phases of challenge. It's been a deep struggle, for various reasons:

1. Managing this crap every day is a roller coaster, and well, it seldom likes to actually do what we expect it to do. Einstein once said that "doing the same thing over and over again and expecting different results" was the definition of insanity. I like to call it... Diabetes.
2. You have some white coat person always reminding you if you don't take care of yourself, you're going to die. And NOT in uncertain terms, either. 
1. You'll get retinopathy... 
2. You'll get nephropathy... 
3. You'll get neuropathy... 
4. All the opathies... 
5. You'll get your limbs amputated... 
6. You'll lose bladder function... 
7. You'll be impotent... 
8. You'll have congestive heart failure, or a stroke...
9. You'll go into DKA, or insulin shock...  
10. You'll DIE. 
3. You may not necessarily have many close friendships, in your immediate circle of acquaintances, that can actually understand you. 
4. You have some family members constantly reminding you of the things the white coat person was reminding you... 
5. You have friends, coworkers, and other relatives, wanting you to FORGET about what the white coats, and the other family members, keep reminding you, and then just go live life with them... "just live a little." (And it's always 'living' that's centered around food, or alcohol.)  
6. You have your own deep desires to want to just be NORMAL, or as close to normal as you can be... and "just live a little."
7. You've carried the heavy load of discipline, and care, however individualized your load might be, for a long, long time. You are very AWARE of how serious it is if you don't carry the load. 
8. You get tired...  You burn out. You drop the load.

Now... most of us understand this circle. We understand that it gets OLD carrying the load, and we get burnout. We stop... we go through the motions. Often, we even get eating disorders, etc. 

So we crusade long and hard for our folks, because, we don't want people to think we gave ourselves complications, when they happen. No one consciously says "I'm going to chug donuts! I want retinopathy!" -- Burnout IS a part of chronic illness. It is NOT a character flaw. It is not simply "people not doing their part," or not taking responsibility. It is simply... people being TIRED from taking on so much responsibility. 

By contrast, we may have well been doing 'our part,' and were just genetically predisposed to complications... But the world outside of us does not understand "genetically predisposed." The media doesn't tell ANYONE about "genetically predisposed" -- only about 'you can prevent and avoid complications, if you just take care of yourself.' Why? Because the media is not interested in shades of gray -- the media has a job, and that job is to gain viewership, and ratings. The only way you get viewership, readership, and ratings... is by generating controversy... And the only way you get controversy is by getting folks to think in the inflexible lanes of black and white. And when you scare people about the rising cost of diabetes (uncontrolled diabetes, mind you), and then show them articles about "My aunt Bonnie, who didn't take care of her diabetes, and was irresponsible, etc, etc..." people get MAD. Angry. Unsupportive. Unsympathetic. 

Does that make sense? I'm sure it does. 

Now, imagine a non-diabetic person... living their life as usual. They want to be normal, and keep living, just like anyone else... and as usual. They have the same family members, coworkers, and friends pressuring them to "just live a little." 

They go to their doctor, and hear:  

• "Meh, you could lose a couple of pounds, but you're fine."
• "You maaaaaay, or maaaaaaay not get diabetes down the long road... It's just not easy to say. But don't worry about it. You'll be fine. Just walk it off." 
• "Meh, you're blood sugar is a little high, but you're fine! There's no way you have any issues... Just walk it off..."
• "Nah, I don't think we need to test anything, you're fine... Just walk it off..." 

Now... If it is hard for us to get our minds wrapped around the realities and burdens of illness, when we HAVE illness... Imagine how hard it is for an illness-free person to get their minds wrapped around the POTENTIALS of illness, and some "boogieman" of illness, out there, somewhere, over the hill... that may come, or not come... but they can't really say for sure... It's just some hazy smoke and mirrors thing. Imagine being "genetically predisposed", but only if you trip! "Don't you ever TRIP!" (Of course, they don't ever mention the trip can also be almost anything, besides weight and diet...) 

Sure, hindsight is 20/20. I'd love to go back in a time machine, and slap the crap out of Liz, and tell her "hey, start carrying the load a little sooner!" (Not that it'd be of much help, with all my other health conditions, medications, and predispositions... They are, together, a much stronger trigger than lifestyle...) Some might say I was damned if I didn't, and damned if I did... But I'm not quite sure what I'd be avoiding, frankly... 

"Live sternly, as a diabetic, so that you don't become a diabetic." 

Seems a bit off putting... It might be hard to convince Liz. Especially if no one's serious about the boogieman... It's never around, and just some foggy illusion thing... And EVERYONE says you can get rid of it, if you do get it... (snark, snark) I mean, yeah, we should ALL do our best to be healthy, and everything... but Liz might want to enjoy a burden free life for a little longer -- at least, as long as she can. I mean, isn't that what we long for when we're burnt out? A bit of freedom? Choices? Splurging without going into some diabetic hell episode? Having a little more than a 1/2 cup of moderation?

Yeah, I thought so... What burnt out people want is not that different than what illness free people want. A little freedom, a little empathy, a little break, a little life.

So we should crusade long and hard for folks, because, people should not think we gave ourselves diseases, when they happen. Chronic illness is NOT easy to manage, but neither is it exactly so easy to avoid... No one consciously says "I'm going to chug donuts! I want diabetes!," and most people aren't binge eating disordered individuals... (And so what if some are... People have demons. People fight them as they can... or struggle, as they tire of their loads... Life is hard.) They are just people living... and illness IS a part of living. Illness doesn't really care if you gave it to yourself, or not. It is NOT a character flaw. It just is... It is simply... people going through the motions of LIVING... 

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"Well, my husband is a board certified endocrinologist, and he told me that whenever a Type 2 patient is 'good,' and gets their numbers 'normalized,' that he removes the Type 2 Diabetes diagnosis, and changes it to a 'Metabolic Syndrome' diagnosis, instead, to help them out." -- Misinformed Mrs. Know-It-All.

The woman was very angry at me. How dare I suggest Type 2 Diabetes has no cure. And furthermore, I could go get a gastric bypass surgery, if I wanted. That, for certain, was also a cure. This, of course, was followed by a few "You people will never be like us; you need to stop comparing yourselves to us... You keep trying to act like we are the same, or have it worse than us, or that your disease is just as bad as ours" type of comments. I can't say that I blame her entirely for her misinformed, self righteous attitude. (Okay, I know she was being kind of a bitch. I'm just trying to be nice, here.)

This is the every day bread of Type 2 Diabetes awareness. Raising Type 2 Diabetes awareness is not easy. In fact, it's one of the most painful things I've ever had to do in my life. My husband certainly doesn't understand it, sees a redundant theme in it, and wonders why I don't just get out of it... since it's obvious I can't change the world. I've gone to bed crying, on more than a few nights.

The comment above, is of course, ridiculous. If there is a board certified endocrinologist out there, doing this, he needs to have his license revoked. Simple as that. He is doing NO ONE any favors. He is hurting his patients a lot more than he knows. I understand that insurance companies love judging us -- hey why not, the media has done a great job of misinforming the world, and insurance companies get their news just like the rest of us, and want to use that to safeguard their old, mighty dollar -- but the value of a 'small defense' against an insurance company does NOT outweigh the psychological harm and denial you feed into a person by acting like their diagnosis doesn't exist. Would these people dream of telling someone who had AIDS "If you're good, and your labs come back good, I'll change your diagnosis to HIV positive, instead?" Yeah, I don't think so! (It's not entirely a perfect analogy, but you get the idea...)

But people don't GET the permanence of Type 2 Diabetes. What's worse is that, while we preach day and night that this is an epidemic of epic proportions, our medical establishment does not act like it! (Oh, lots of people are acting like it, don't get me wrong... but it's, mostly, the people who want to scam us, and take advantage of us...) If this is such a serious threat, why isn't the American Medical Association, and the American Association of Clinical Endocrinologists, making it a priority to get doctors educated, and prepared, for diagnosing, and empowering patients? Why are they not working hard to give patients the weapons to fight back, and effectively not feel themselves the hopeless victims of this disease? (I know someone out there will claim that they are... but the proof, or lack of proof, is in the pudding, folks.)

• Patients are out there, going undiagnosed, not because they don't regularly see a doctor (though some, undeniably don't...), but because doctors don't know how to recognize the signs of diabetes, or are UNWILLING to mark down a "diabetes diagnosis" in a patient record, thanks to insurance company scheming. More and more Type 2 Diabetes patients are being diagnosed by other medical professionals, such as gynecologists, urologists, dentists, and eye doctors. Often, a patient even gets misdiagnosed based on ridiculously old knowledge, like assuming that an adult could not be a Type 1 Diabetic, instead, leaving the patient vulnerable to Diabetic Ketoacidosis, and Diabetic Coma.  
• Most doctors, especially Primary Care Physicians (or Family Doctors), get a MINIMAL amount of diabetes education in medical school, and NO extended diabetes education throughout their careers. Diabetes information, care, and knowledge is growing about as fast as technological advances are... why should doctors remain in the dark, if we, as patients, can't afford to do so? Some doctors are going by on 20, and 30 years of OLD diabetes education! As a consequence, when a diabetic patient gets diagnosed, thanks to this lack of knowledge and insurance company scheming, patients get denied access to specialists, denied access to certified diabetes educators, denied access to dietitians, denied access to insulin, etc. Doctors, ROUTINELY, give NO information or direction to a newly diagnosed Type 2 Diabetes patient, leaving them vulnerable to whatever might be out there, on the internet. There is something vastly wrong with an insurance company that denies access to a dietitian, or certified diabetes educator, but is happy to approve gastric bypass surgery. In other scenarios, doctors give patients extreme misinformation, such as "STOP eating ALL fruit because they are high in carbs." Ummm, hello, not all fruit is made the same... We need to learn to MANAGE food, not put the fear of God in people.   
• The medical establishment is allowing itself to be ruled by the treatment guidelines of the American Diabetes Association -- an Association with clear conflicts of interest, per a recent study done by the Mount Sinai School of Medicine, and which has been SLOW AS MOLASSES in embracing the future of diabetes tight control, and management. What's worse, they have GREATLY contributed to diagnoses getting delayed and delayed. This is WRONG and unacceptable. Doctors and Endocrinologists need to be educating the ADA, and not the other way around! 
• Instead, more and more "doctors" and "medical professionals" are taking advantage of the serious need for diabetes patient education, as a door to write books, push supplements, spread their own pseudoscience, and MAKE MONEY. 

Don't get me wrong, here. I am not anti-doctor... and I understand that doctors are humans, too, who can make character and judgement mistakes. There are some AMAZING, well educated, empowered doctors out there, working hard to help empower diabetic patients, and help out in the online diabetic communities... But the overall lack of education, and standards, in general, for our medical professionals is wrecking havoc in our lives, as patients, and it's wrecking havoc in our ability to garner empathy, build awareness, and motivate outsiders to help donate their time and money in the hopes of finding a cure. Who donates to something they think already has a cure? 

Dear doctors, you have MUDDLED the language of Diabetes, and made it a messy affair. Every time you get on TV, write a self serving book, misinform a patient in your office, you MAKE IT HARD for us to live, control, master, and grow, with this disease. How can we, as patients and advocates, have power behind our voices, if you tell lies to people with an M.D. next to your name? Who is going to believe US over you? 

• STOP making up statistics to sell books! No, 50% of Americans don't have diabetes... 33.8% of Americans are obese, but only 8.3% of Americans have diabetes, and that number INCLUDES all types of diabetics, including the undiagnosed. Anyone who claims these things NEVER quotes any real studies, double blinded studies, studies published in any legitimate journal of medicine, of any kind. They make up catchy terms to feed on people's biases, and fears for self serving purposes. Stop getting on Dr. Oz to sell LIES. Broccoli is NOT going to cure anyone's Diabetes. (I'm looking at you, Dr. Hyman.)  
•  STOP telling people gastric bypass will cure their Diabetes. It will most certainly NOT. And what pisses me off the most, is many of you have gotten on TV, and the news, and told everyone that it is, and that it's 100%. Now I can't frigging walk anywhere without some moron asking me why don't I just get bypass, or some other form of that. Well... don't mind if after being called misinformed, and uneducated, by people the likes of Misinformed Mrs. Know-It-All, above... that I get angry when articles like this hit the news, FINALLY admitting the truth... No I am not in crazy denial! It is NOT a frigging cure, or a guarantee of anything! Remission is NOT a cure, it is tight control. And this surgery is a Russian roulette! And, hello, I can improve my OWN care without a surgery, and *I have*, thank you very much. Someone should staple your mouth, instead. :S 
• STOP throwing terms like "reverse", "remission," and "cure" around, in exchange for tight control. Even a Type 1 Diabetic can achieve tight control, and reverse complications, and that does not mean they are cured. Type 2 Diabetes is a progressive illness that requires vigilance, and ongoing monitoring, and with time, those medication free moments will be just a thing of the past, and we will need oral medications, and insulin, to keep healthy, and in tight control... Most full blown Type 2 Diabetics will eventually need insulin, in their lifetime. We may be able to prevent complications, or even slow or 'reverse' the progress of some of them, but there is NO reversing or curing Type 2 Diabetes. Stop bullshitting people. We are big boys, and girls. We can deal with the truth.
• STOP telling people that losing weight will make their diabetes go away! Stop telling patients that they are cured, while they are in your office! These are harmful lies, for all the reasons I mentioned above. Weight loss does NOT remove Type 2 Diabetes. It only helps MANAGE it. Type 2 Diabetes has NO CURE. 
• STOP telling people they can prevent Type 2 Diabetes. NO ONE can prevent anything. This creates feelings of insecurity, self blame, and inadequacy when a person gets diagnosed with diabetes despite having done everything in their power to change their odds. Why not simply talk to people about REDUCING THE RISK of getting Type 2 Diabetes? Isn't that, instead, a little more realistic? Diabetes is NOT a zero-sum game. Everything has risks. Nothing is black and white. 
• STOP equating diabetes with obesity. I GET IT. I am not a moron. I know that there is a very STRONG link with diabetes and obesity. It is a risk factor. Obesity, however, does not mean diabetes.  There is NO SUCH disease as "Diabesity." Obesity is it's own disease with its own complications, and Type 2 Diabetes is an autoimmune and metabolic disease. There is no known cause for Type 2 Diabetes. Why not all obese people develop an autoimmune response that leads them to Type 2 Diabetes? No one knows. And why are not all Type 2 Diabetics overweight? (Sure, some are misdiagnosed, but many are not...) The fact is, no one knows. There is also a very strong link between diabetes and pollution and pesticides, BPAs, drugs (such as statins, beta blockers, antidepressants, antipsychotics, steroids, etc.), other illnesses (like Polycystic Ovarian Syndrome), surgeries, drinking, smoking, etc. Why can't we discuss ALL of those risks? Why can't we be realistic about Type 2 Diabetes? Why can't we speak to people with the entire truth? There has been a 400% increase in antidepressant use by Americans.  Don't you think THAT has had more than a little hand in raising the Type 2 Diabetes incidence? 

And another thing... if it's so easy for you to tell a patient with Polycystic Ovarian Syndrome that it would be helpful in controlling their disease to "eat a balanced diet low in carbohydrates," WHY IS THIS SO FRIGGING HARD TO TELL TO A DIABETIC PATIENT, AS WELL????? (Oh, that's right... it's because pills to treat PCOS don't cost an ARM AND A LEG, and don't make you any kickbacks.) It's not that that is all that is required for better health, but come on, throws us a bone! People are out there avoiding sugar, and all fat, thinking this is what made them diabetic, and thinking what we eat in itself gives us diabetes! It is NOT. 

Doctors, this may not be entirely your mess... But you sure have lathered yourselves with GUSTO with the manure of laziness, and greed. I hold you PERSONALLY accountable for the state of our nation's health when 2050 rolls around. Get some guts, and fight on our behalf.  

 

 

 

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The room is dark... though a few sprays of light come in through the windows; beams from the outdoor lamp posts invading my thoughts. The evening's navy watercolors wash the walls, and windows... and the sounds that would normally lull me to sleep, now keep me awake. The man's heavy breathing, the cat's snoring, the whistling of the wind through the glass panes, the neighbors upstairs finishing up whatever toiletry rituals.

The bed feels lumpy, unusually so, and I toss and turn. I toss on my left side, and I feel the burn shoot through my esophagus, damned acid reflux that never plays nice. I have to, somehow, find a way to straighten my arms, uncurl the wrists, unclutch the comforter. I never liked my thoughts, much, at this hour... Much like the acid reflux, they just never play nice. Irrational foreign invaders, like quixotic windmills, in my mind. I am scared, I admit. I am tired, and I'm scared.

I haven't exactly been taking the greatest care of myself, over the last month or so. Why can't I just find the will, the strength, and just keep going? Be perfect all the time? Why can't I just pick up, and do what mostly no other person (without a chronic illness) really does (but claims they do), and save my life? I see them eating crap all the time -- those skinny goody two shoes... I see them there. Living the chronic free life. Chronic. You'd think I was talking about pot. Save my life. I shouldn't have eaten so many carbs. I think of my dad. I think of kidneys. Gosh, I think I can feel my kidneys. Proteins, flushing, overpowering, disempowering. Would I even be able to know if there was something wrong with my kidneys? No. Not really. Not without insurance... though perhaps, though, through the Free Clinic.

But not my ovaries. No one cares about my ovaries. Ovaries are "luxuries." I think about what state mine must be in. My thoughts race, and travel, and warp, and twist... Planned Parenthood can't do anything about my ovaries... I think about women losing ovaries to cysts. Why the hell me? What the hell was so special about ME, in my family, that I had to be the one born with the woman-changing-into-a-man-disease. THIS IS SHIT. I think about that stupid woman from an old job... that woman who must've weighed about 400 lbs, yet she had no disease. No disease, but the obesity, of course. I don't blame her, one bit... I am jealous, I have to admit... But she'd sit there, and ask me dumb things. She'd ask me "Why is your scalp all shiny under the lights? It's so shiny!," and she'd giggle... Sigh... how the hell do you tell someone "Bitch, I am losing my hair, can't you get some manners, tact, and a sense of self??" I don't want to lose my hair... I don't. I am NOT my hair. Hair. I have waaaaaay too much facial hair. Goddamned PCOS. I am tired of plucking away the hair... I can't handle waxing, can't afford electrolysis, much less laser hair removal... So pluck, pluck, I must... What to do about all this crappy hair??? Every day... I am more and more a shadow of who I used to be... a woman with no hair on her head, and all the hair on her face. I constantly forget to take my medicine. Stupid Hypothyroidism, stupid PCOS. I. should. not. have. eaten. so. many. carbs.

I must toss onto my right side. I wonder if I'm losing my mind; a person without a proper job... ends up losing their mind. My back hurts, my breathing is hard. Anxiety builds, and I think about my current job. One to two days a week... Unloading trucks. I start to cry. I don't want a job, I tell myself. Employers are mean people, they persecute you, people want to run you over for their own fortune. Still, I must get a better job, another job, some kind of job... I wonder if I can have a job just ranting and raving craziness, like I do now... I think not. Those are reserved for people with more glamorous, yet crappier diseases. Diseases where people aren't to blame for their crap. There are crappier diseases? I don't know... I think about the new yogurt place, downtown. All the same yogurt, all a different flavor, all the same stuff. All the same crap.

Stuff. Too much overwhelming stuff. If I fall asleep, for just long enough, I can forget about some of this stuff. I can put depression back inside that box, and busy myself with life... but just for long enough.

I should not. have eaten. SO MANY CARBS.

Carbs, by basalt

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As diabetes advocates, we spend an awful lot of time writing about our challenges, our frustrations, and the misinformation that is so rampant out there in the media, internet, and medical professions.

It is with great JOY that I write my first post of the year, giving a STANDING OVATION, and a very much heartfelt thanks, to the Mary Greeley Medical Center, in Ames, Iowa, (just a few blocks from where I live) for taking the time to create an innovate way of FIGHTING misconceptions and stereotypes among medical professionals, and giving them an idea of what it's like to live with this crappy ass disease, even if it's just for one day. While some of us may not be on insulin, diabetes still demands many changes, vigilance, and eternal food obsessive thoughts... (What to eat, how many carbs does that have, what's in that dish, I am too high right now to eat, I need to stop right now, and eat... etc, etc.)

It is, for all of us, so very "damned inconvenient," as was put by Dr. Timothy Leeds, an obstetrician that participated in this exercise.

Basically, June Heiden, a registered nurse and certified diabetic educator, came up with this plan... to assign "Diabetes for a day" to several medical professionals, and to have to go through the inconvenience of stopping their day, and everything they are doing, to treat lows, highs, focus on meals, and count carbs... and everything that goes along with it... well, except the actual feeling of the lows and highs (cus well, they don't actually have diabetes)... To help create a 10 minute educational video for medical staff, and the public.

I am, to say the least, more than a little impressed with this idea. I've always daydreamed of my medical staff knowing what it's like to live this obsessive/compulsive roller coaster for just one day.

While I am sure there is much, much to be done in our community to IMPROVE how we approach persons with Diabetes, of all types... I have to say KUDOS, MGMC. You've done a job WELL DONE.

Please, take a moment... to leave a comment, either on our town's feature story, or write a letter to the MGMC staff THANKING them for this creative enterprise.

As reported by the Ames Tribue: "A day with diabetes: Medical center films education video".

And here it is...  "24 Hours: A Day With Diabetes"

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