Burnt Out on Judgment: The Not So Simple Motions of Diabetic Living...

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... 

Playing golf on a blustery day

I was reminded this morning of something which struck me during a conversation with my parents last year. Some time ago they took up golf, and as with many sporting endeavours they have embarked on before they plunged into it headlong, devoting a huge amount of time and effort into improving their game. Taking lessons, trying new kit and clubs in the hope of finding some new 'magic ingredient'. And they got better. Much, much better - but never seem quite satisfied with how things are. Always want to improve a little more.

In this respect it resembles diabetes almost exactly.

Now I don't play golf, but from what I can see it appears to have been deliberately designed to be almost unimaginably frustrating on almost every level. For starters the equipment involved and physical practicalities of hitting a tiny ball long distances by whacking it with an unevenly-shaped weight on the end of a long stick almost guarantee that no two attempted shots are likely to yield the same results.

In this respect it resembles diabetes almost exactly.

And even if you could somehow miraculously steel your sinews to perform each swing with robot-like precision it would still not be enough. The nature of the playing field itself, with gusty inconsistencies of wind and constantly variable grassiness/sogginess/bounciness/sandiness of the ground (apologies for the use of highly technical golfer's terms there) could still turn yesterday's perfect delivery into today's disappearance into the lake.

In this respect it resembles diabetes almost exactly.

And then of course, there are those brave souls who venture far afield. Just sticking to the same course day-in, day-out is OK for a while, but soon there is a temptation to reach for a little variety. So rather than restricting themselves to a familiar course where their previous experience might at least count for something, they voluntarily put themselves in unfamiliar surroundings. Each shot becomes a wild stab in the dark based on little more than gut instinct and a laughable attempt calculate (hah!) the interaction of a myriad of contradictory variables.

In this respect it resembles diabetes almost exactly.

On Friday I woke to a BG of 7.3 (131). I ate two slices of toast and because I was going to the gym I reduced my bolus by 80% and set a TBR (temporary basal rate). At the gym I did my usual routine for the usual length of time. I had a measured small amount of fact acting carbs before and after. I tested when I got back and was 10.0 (180).

This morning I woke to 7.6 (136). I ate exactly the same breakfast. Exactly the same bolus and basal tweaks were made. I did the same set of exercises over the same length of time. Ate the same number of fruit pastilles. Got back to 6.4 (115).

Now I'm fairly happy with either to be honest, but the difference in the two days amounts to almost the entire 'range' that people living with diabetes are supposed to aim at. And I didn't change anything.

With Artoo I have a cracking set of clubs, it's just that I'm trying to play golf on a blustery day.

Lessons from the Butter Incident

I love comedies. Satires, in particular. Some of the greatest of life lessons were buried deep within satirical works of literature, theater, and film. We laugh through them, but seldom do we stop to consider the valuable nuggets we've been just given.

In respect to filmography, what are probably two of my most favorite scenes are: Cher's observations to her friend Tai, about Monet paintings, in the movie "Clueless"; and Cameron's enthrallment with the little girl in Georges Seurat's "A Sunday Afternoon on the Island of La Grande Jatte," in the movie "Ferri's Bueller's Day Off."

These two scenes loosely mold a certain view I hold about life: Upon close examination, our lives are one, big, muddy mess; only from a distance, can we truly appreciate the elaborate works of art they have become --  black splotches and all. Just because we can't see the big picture now, does not mean there isn't one.

This week has been no different, for me.

The fact is, the diabetic online community painted a pretty big canvas, this week. Some used dark, somber, depressing hues. Some used vibrant, optimistic shades. In the end, we formed something. A message, quite loud, and clear. Emotions, and watercolors were mixed, and something out there... was soon formed... that when I step back, it's quite the masterpiece.

Diabetics are TIRED... 

• Of fear mongering, population targeting, and misinformation in the media: Yes, non-communicable health conditions are dangerous, and they need a certain level of awareness; NO, they don't benefit from overly inflated, statistical research, aimed at scaring to death, targeting, humiliating, and laying blame on certain populations. This kind of environment only engenders animosity, a lack of empathy, and persecution, as well as breeding depression in those affected.
• Of the same, stereotypical, awareness figures: Yes, diabetes can affect an aging, overweight population... But it can affect everyone else, as well! So many of us are NOT old, or overweight. Many of us are young, active, healthy, athletes even. (Yes, even many Type 2s!) Why not showcase people who have worked WONDERS in spite of diabetes? People who can garner our pride, and our motivation? People who are not clueless, but veterans at this game.
• Of the same, stereotypical, awareness messages: Diabetics don't need to follow a 60% carbohydrate diet, in order to do well. Diabetics can be low carbers, vegans, moderate eaters, athletes who consume even more carbohydrates than this. We come in all shapes, and sizes, and we don't live by a chart... We live by what our glucose meters tell us! The sheer mention of a new diabetes cookbook out there really enrages most diligent diabetics... because we KNOW it's a lot of bunk. There's no such thing as a diabetic diet, and there are so many stupid notions out there to even recap in this little post (like that everything needs to be low fat), that I won't even go there.
• Of the insincere profiting from our disease: Of cheesy product marketing, cook books, miracle cures, and scam artists. Of medications and treatments that cost an arm and a leg, accessories that cost an arm and a leg, and tools that are kept from folks who need them because only those who are privileged to good health insurance, or a good income, can access. 
• Of the FDA: Famous for slowing down progress in what many deem as necessary advances, and tools in our community, yet the fast trackers of so many dangerous drugs, at the same time. Oh, why, FDA, must you not advance progress on something like a more accurate blood glucose meter... but you are eager to fast track yet another drug before we are fully ascertained of all it's risks in a certain population? (You know, this didn't use to be like this... I guess back in the 80s we complained the slowness of medication approval killed people... I can see it in certain diseases, etc, but I'm not so sure the dangers outweigh the risks, in diabetes. If Victoza sucks... it's no one's fault but Novo Nordisk's, and the FDA's.)
• Of the constant social equation behind having Diabetes: 
• Diabetes needs psycho-social support. It's one of those conditions that just incredibly grips at the heart of where we are the most connected to one another -- the social connections and moments that, though sometimes centered around food, nourish our souls and our relationships.
• Of just the entire need to JUSTIFY ourselves, and who we are, and what we are to outsiders. The road to self acceptance, and the personal acceptance of others as diabetics (and whatever their stories) is a MARATHON... often with thorny roses, along the way. 
• Of the lack of progress on these issues, and the lack of change: This same old tired song and dance is being played upon our diabetic lives, over, and over... and over again.  

But at the same time... Diabetics are TIRELESS... 

• Optimists: We can see the light in any shade of gray; we can see how a bad can work for a good. We can see a blessing in what might otherwise be a terrible curse.
• Advocates: We will go wherever, whenever. Our words will ring true. We will go out, and educate anyone, write letters, write blogs, create societies, start petitions, groups, online social media, make personal appeals, teach. All under almost any circumstances: flooded homes, lack of sleep, weekend warriors. We will NEVER stop.
• Friends: An ear, and a shoulder, for those to cry on, to garner knowledge from, experience from, a virtual hug to embrace, a meet-up to get excited about... REGARDLESS of type. We are the secret society we have made for ourselves, that's not so secret, and we're eager (though bitterly so) to welcome you on board. 
• Hopefuls: People who look into their loved ones eyes, and will NEVER lose their faith, their dreams... their visions... their drive. The reasons to keep trying, to fight for tomorrow, to wake up for TODAY. 
• Supporters: Because it doesn't matter who, what, when, or how... tries to hurt you, or put you down... we will ALWAYS have your back. Always. Even if you're old, not so perfect, not so fit, not an athlete, in denial... and cook with butter. 

This week... I truly learned the AWE inspiring embrace of the D O C. 

If you are battling diabetes all on your own, I would like to truly urge you to consider, even if only as a fly on the wall, becoming a member of the diabetic online community. No need to blog, no need to be OUT there. But even just reading blogs like this, or attending Diabetes Social Media Advocacy night, on Twitter (Wednesdays, at 8 pm CST/9pm EST), will do SO MUCH for your well being. You NEED psycho-social support. Your social environment may want you to be alone with your disease, but you DON'T HAVE TO BE. You are NOT alone. EVER. You can do this thing. Come walk through life with us. Your shoes might be different, but when they walk beside mine... They make that long road... oh so nice. (We have plenty of extra blue shoes to spare.) 

For Further Reading:

"She's Got Diabetes, Now, Y'All!, Saturday, January 14th, 2012 

Rediscovering porridge

Someone I 'met' on a forum who started on an insulin pump a year or so before me said that in some ways she had to relearn much of what she thought she knew about her diabetes. Many tried and tested observations, and theories as to what was happening seemed no longer to apply. Switching to a pump so fundamentally 'changed the rules' that almost everything had to be evaluated from scratch.

I've had a glimpse of what she meant recently when I decided to retry porridge (oatmeal for US readers) as a breakfast choice.

I've always quite liked it in the winter and it has a reputation for being helpful cholesterol-wise. Mostly though it has a reputation for releasing its carbohydrate slowly and steadily which is very useful if you are trying to keep BG (blood glucose) levels after meals under control. For many years I ate cereals for breakfast, basing my choices on what I had been told - this is low GI, that is slow absorption, blah blah blah...

For many, many diabetic years I tested primarily before meals with ad-hoc other tests if I 'felt funny' or needed to drive. This was OK in its way, but never really let me see or evaluate what was happening after eating different foods. I didn't look at those choices critically enough for them to make any real sense. It was only really after 'meeting' folks with Type 2 Diabetes online who have food choices as their primary weapon in the struggle to control BGs that I realised how little I knew from testing about what to expect from different foods.

GI values are all very well, but they are only an average from a pretty meagre sample. And averages (as anyone with a BG meter can tell you) can hide a multitude of sins.

Having embarked on some after-breakfast testing a few years ago I quickly determined that all cereal is evil. There was just none that I found I could eat and remain in single figures (below 10.0mmol/L 180mg/dl) at 1-2 hours after eating. Porridge seemed a particularly bad example. I may as well have been eating jam.

So I concluded that for me porridge was not slow release at all, and stuck to Burgen soya and linseed toast with much better results.

I knew that at least part of the problem was a 'gap' in basal coverage that made breakfast particularly tricky time for me. I took my Lantus at breakfast time and while the last dose had faded and the next dose was still dragging its heels in 'onset' I had perhaps an hour with less basal insulin than I needed.

The pump of course, has fixed this. Continuous almost infinitely tweakable rolling patterns of basal insulin trickles can allow for the most challenging of basal requirements.

Once I had a basic basal pattern working OK I began to wonder whether I might be able to cope with a little porridge every now and then. The first few results are very encouraging. This morning I rose from 4.7 (85) before breakfast to 6.9 (124) an hour and a half later.

Porridge it seems is back on the menu. Score 1 for teampump.

She's got Diabetes, now, Y'all!

I love observing people. People are an interesting societal experiment of contrasts, paradoxes, and dichotomies. If you are a lover of the observational art of human interaction and behavior, then there are two places you probably, secretly, enjoy: the mall, and the internet.

I love the mall, because frankly, I'm visually amused. It's like TV, really. (Except, well, I still don't want to see your boxer shorts, or your g-string, so please, pull up your pants.)

The internet... is a little more complex. It's like TV, in many ways, except that you actually get to SEE the end results of people being told how to think and feel (and often, with the added boost of anonymity). And believe me, there are plenty of influential forces on the internet, just like on TV, trying to tell us how to think and feel. 

So... all of this being said, it came as no surprise to me when yesterday, everyone became the judge and jury of Paula Deen, when a rumor broke out that she would soon be announcing that she has Type 2 Diabetes, and would be signing a major endorsement deal with big pharma corporation, Novartis. Tweeterers, and folks commenting on articles, let their disgust be loudly, and well known. Even certain entities in the diabetes online community, which I will leave unnamed, immediately and openly expressed their disgust, with expressions like "Ugh!," and "Really? Ya think?," only to delete those tweets later. My fellow pals at The Blue Heel Society have been working OVERTIME just trying to put out some of the fires. 

Why are people getting so worked up? 

Well, sadly, some of the backlash from this will BE that people will use her as an example and an excuse to ridicule, bully, and belittle others, especially Type 2 Diabetics, and spread misinformation that diabetes is caused by too much consumption of sugar, butter, lard, or fried foods. There's just no getting around that. 

I do think, however, that people just love to hate Paula Deen, for the sake of hating Paula Deen. Let's look at some facts. 

1. Paula Deen is annoying as *&%#.  I can't sit through much of her show without her little terms of endearment, expressions, and actual pitch and tone of her voice, getting on my very last nerve. Frankly, she's a little annoying to look at, too. I can't really put my finger on it... but there's just something about her hair, and what she wears, and how she carries herself... She doesn't have the most razzle/dazzle personality out there. This alone makes perfect fodder for being the SCAPEGOAT to anything we can possibly hate, and what is more vilified in our current decade than apparent unhealthful eating? Am I right? 

I know, I know what you're saying...! I can read your mind. You are an HONEST, unbiased person... and you would NEVER hate someone for just what they look like, or their personality -- it's that horrible lifestyle she's promoting, and you are raising your voice loudly against it.  

Let me ask you this, then... where is your anger for Adam Richman's "Man vs. Food Nation?" I mean, come on... that show makes me PUKE. If anyone glorifies gluttony, it's Adam Richman. But, really, to everyone... He's a star. Everyone loves Adam Richman, and he can do no harm. At least Paula Deen's show was never about "how much can I eat before I bust my guts, attempting it, while I'm on vacation." (Vacation is always the excuse, by the way. Only try killing yourself with food, while on vacation.) 

Where is your anger for Sunny Anderson? Yeah, she has some healthy recipes... But so does Paula Deen! Sunny Anderson is basically, a younger, black Paula Deen, cooking Southern Soul Food. Why is she not the Queen of Evil? She obviously has a few pounds to lose, as well... 

"Oh, but Paula Deen cooks with butter, and lots of sugar, and lard...!" -- Ummm... Remind you much of Julia Child? Where's your hate for her? She's considered the QUEEN of cooking! And she also BRAGGED about  it... and a little more boisterously than Paula Deen.

Oh, wait, I know why... Because she's that annoying woman, with the southern drawl, that reminds you of your redneck aunt who always came and pinched your cheeks, and called you "dumplings." THAT'S WHY. 

2. Paula Deen endorses bad eating. Paula Deen has a very overacted, dramatic show, showcasing the southern cuisine she grew up with, just like anyone else who has a show on holiday foods and eating, is showcasing that. If you think her food is bad, then guess what, YOU'RE the one endorsing it when you watch it. In fact, when you watch almost any of the shows on the Food Network, you're endorsing bad eating, AND telling the network you want to keep watching such shows about bad eating. (Let me tell you, for all his bitching, Anthony Bourdain had NO reservations about eating that really fatty, roasted hog on a rod, the last time he visited Puerto Rico...) You can't really pick and choose which particular brand of CRAP cooking you watch is actually crap. That being said... Not any single cuisine or style of eating is going to make you obese, or make you get any disease. Hey, people say it all the time... They say "back in the 50s, you never saw many obese people..." Well, back in the 50s, people ate butter, lard, sugar covered lard butter... whatever. Understand? Food doesn't make anyone, in itself, unhealthy... It is overeating that potentially does.  Do I expect Paula Deen to be eating this type of food at home, every day, just because she has a show about it? Well, not anymore than anyone who has a show on holiday food. That would get old, and annoying fast, don't you think? And many of the recipes on her site are actually quite light, lean, and decidedly not southern. 

Also... and this might be controversial... but Paula Deen's food, for all it's caloric, sugar, and lard content is probably a LOT healthier than what America currently eats, and buys, on a daily basis. It's at least HOME MADE, and won't sit on a shelf like that burger you ate at McDonald's last night, for 6 months or more, without decomposing!  

3. Paula Deen wants to profit from her Diabetes.  Well, so far, we really don't know if she has Diabetes. She's going to make an announcement on Tuesday, and it's very likely she might admit to it. (Though, for the future, I'd like to caution any one of you against using sources like The Daily Mail, and The National Enquirer as credible sources of news.) As of yesterday, afternoon,  Novartis had told CBS that Paula Deen had not yet signed a deal with them.  

All of this being said, if she did... who cares? Why does it anger anyone if she does? Just what exactly are the inferences here? Are you inferring she's going to just use pills as an excuse to keep eating like crap, and pushing bad food? Or are you inferring needing medication as a Type 2 Diabetic is a shameful thing? Or... perhaps you are inferring that people with Diabetes who take big pharma endorsements are amoral, or have sold out? Is this, somehow, any different than Omnipod, Roche, Sanofi Aventis, etc, sponsoring some of the biggest diabetes bloggers out there, right now, paying for all their supplies, and just flying them all over the place? "Yeah, but we spread awareness..." How do you know she's not going to spread awareness? How do you know all she's going to do is ask people to consider a new drug alternative that's actually working for her? Isn't that what you do, as well? Furthermore, how do you know this is actually not a good, extra tool, people with diabetes could benefit from hearing about? How do you even know she might not turn around, and make a show showcasing how you can still eat with flare, and with passion, WHILE managing diabetes? 

4. Paula Deen knowingly hid her Diabetes, so she could keep hawking her show. How dare she! How can she sleep at night! Look, let's face it. A lot of people are a bunch of judgmental jerks. These days, everyone weighs any kind of life altering event very carefully before announcing it to the public. Even things like getting married, or getting pregnant, are career enders for many women in the spotlight. I know Paula Deen is no Beyoncé, but folks... If you loved something, with a passion, and suddenly someone gave you some drastic, dramatic, life altering news, you would need some time to think back, and re-evaluate your life. You want to regroup yourself, and your thoughts, before speaking to anyone. And have you stopped to think that she was also probably under contract with the Food Network? I'm sure she couldn't have stopped, mid season, and been like "F it! I got Diabetes now, so I can't go on..." Things like the menu, style, and theme of the show, are likely contractual stipulations. Besides... her health is really her own damn business. Not yours... and certainly not mine.  

5. Paula Deen brought this on herself. 

"There's no place for sympathy for type 2 diabetics, because factual scientific evidence has shown that it is brought on by themselves. " -- John Sampso, commenting on an MSNBC story.

And herein lies the rub of the matter. 

We, as a society, have decided Type 2 Diabetics deserve no sympathy. We have decided that Type 2 Diabetics are subhuman. Undeserving of sympathy, of support, of compassion, and worthy of our judgment, scorn, and policing. We have decided that Type 2 Diabetics, are basically, everything we hate about ourselves, or about the world's injustice toward our loved ones. How dare we lack self control, how dare we can't stay on our diet, how dare we don't lose weight, how dare we eat junk food, how dare we cook unhealthy food. How dare we EXIST. 

We can debate ourselves to the moon and back if someone's behavior contributed, or not, to their disease... (And when it comes to Paula, I honestly don't know. She is, after all, 65. Age is a huge contributing factor for Type 2 Diabetes. I don't know how long she's had it, but if she's kept it at bay until now, hell... GOOD FOR YOU, PAULA.) 

But, let me ask you this... If someone really did give themselves any disease (which I think we all know life is a little bit more complicated than that)... Does it really matter? 

Do they stop being worthy of our humanity? Or is it more... a projection of our OWN inhumanity?

Paula, honey... If you are a diabetic, WELCOME, and I am so sorry. With tears for the future journey ahead of you, I welcome you... Team Paula, all the way, baby. 

For Further Reading:

"Lessons from the Butter Incident," Saturday, January 21st, 2012. 

The Messy Language of Type 2 Diabetes

"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.  

 

 

 

Guest post: BG monitors for blind/visually impaired people

A few days ago we had a comment on our D-Tracker review from someone called 'Faulty Headlights' who was wrestling not only with diabetes but also with blindness. I can't imagine how hard that would be. As the conversation continued I became increasingly interested in the challenges faced by blind and partially-sighted people, especially in relation to available blood glucose monitors and their usefulness (or otherwise). Julie (Faulty Headlights) kindly agreed to write a guest post sharing her experience of the currently available options. If you have any experiences to share please add a comment below.

Three Blind M.... Monitors???

Living with diabetes can be challenging enough for some people, dealing with injections, blood monitoring, carb counting and so on.

I've lived with diabetes for 21 years now but 5 years ago I lost my sight do to bad control. If I thought it was difficult controlling it then, I was pretty darned puzzled as how I was going to manage not being able to see. I know I have help if I need it but I have always tried to be as independent as possible and didn't want my independence taken away from me just because I had lost my sight.

So not long after I learnt to use a computer I started looking into accessible products for diabetics with visual impairments. Mainly blood meters.

The first monitor I came across was the SensoCard plus (now discontinued), I liked this machine very much. Nice large display with one large tactile button on front and two smaller buttons on side for navigating menus, also. Clear speaking voice for reading results, a slot for easily coding machine and USB port for connecting to PC. Why oh why did they discontinue this one!

I asked around about another and was pointed towards the RNIB who specialise in audio products for the blind and visually impaired. They told me about the Clever Chek machine and there not seeming to be any other option I went for it.

Big mistake! It was awful! I’m sure there are other people using this machine who like it ok but they're probably all over 60 and still using phones like bricks too. Oops sorry, did I just write that?

The Clever Chek machine is bulky and has five buttons on the front, it has a large display and volume control which I guess would be good for people with hearing problems as well as sight. It has many features the same as the SensoCard plus but much much more difficult to use and there is way too much spoken information on start up which just isn’t necessary .If put in a pocket or bag it switches itself on with a merry little tune and tells you and everyone else in the vacinity thank you for using this product followed by date and time. Who ever designed this machine did not have the blind in mind. The strips seem to need more blood and I’ve been given so so many false readings in the past. I’ve compared them against my dad and sisters machines and readings were well off, maybe this is just my machine? I might have got a faulty one but I'll not be asking for another. One good thing about this machine is that it is codeless and... and... um? Nope, I'm struggling to think of anything else!

I was pointed towards the RNIB yet again and now they have a new audible blood monitor. It's called the SuperCheck2. It looks a bit like an mp3 player and has only two buttons. GREAT! It too has volume control, USB port for connecting to PC where you can store results and print for your doctor, large display, memory for up to 500 results and gives you averages over a week month and so on. It has a nice clear voice which reads pretty much everything a sighted person can see on their machine and is also codeless. Brill! On each of the three machines there is a 'dipped' area so you can feel where to insert the strip. The strips have one rounded edge and one flat edge so it's easy to know what end is inserted into the the machine.

What I like about this machine is that you can set alarms to remind you when to test your blood sugar and it doesn't look like a brick.

Technology has come on so so much over the years and it is good to see companies thinking about accessibility. One company I am pleased with is Apple who have made many of their products accessible to blind and visually impaired people with their voiceover.

I was recently told of new blood monitors called the BGStar and the IBGStar which connects straight into an ipod where your results can be displayed and stored. I don’t have a lot of information on these yet but am excited to see how it works and if it will be made accessible with the voiceover on iPod touch and iPhone. Technology really has come a long way, can you remember the old machines from many moons ago? Again, BRICKS!

I have now downloaded and tested 4 different iPod apps designed for diabetics to store their blood readings, exercise plans and carbs and so on. I was disappointed to find out that none of them were completely screen reader or voiceover friendly. Some of the icons were read aloud but others like time and date were not. I think apps like these are a great idea for both sighted and visually impaired diabetics, I mean, how many times have you shown up to your diabetic clinic with out your record book? Many of these apps also allow you to sync it to your computer or to email your results straight to your doctor. Nice one!

Julie.

UPDATE: See also the Caresens 'Voice' Blood Glucose Monitor for Blind/Visually Impaired people that I saw at the INPUT event in Truro