Keeping the Patient Dignity

I've had type 2 diabetes for nearly 4 ½ years. Though not a very long period of time, it's still been very challenging...

I've lost weight, gained weight, lost weight; I've low carbed, extremely low carbed, and eaten intuitively; I've exercised myself to death, been a couch potato, and a simple walk around the block lover; I've quit soda, drank only water, and then gotten on diet soda, again... I've had highs and lows, and lows, and highs. I've been proud of myself, and disappointed in myself -- and I've learned just how HARD it is to change myself -- all willpower aside. I've even dealt with some very angry type 1 diabetics and some very unhealthy diabetes forums and communities.

All of these challenges aside, none of these compare to the one big challenge I've had to face while living with type 2 diabetes... keeping my dignity as a patient.

I'm no stranger to the discussion of keeping the patient dignity. I've challenged various prominent diabetes writers on their own biases and deliberate fact twisting, I've written various letters to television programs, to diabetes programs like Take Care of Your Diabetes, to celebrities like Conan O'Brien, and have even hosted an online Diabetes Ice Cream Social event to get people thinking differently (and been skewered for it). My most famous of these discussions on patient dignity, however, happened as an ePatient Scholarship recipient, when I attended Stanford University's Medical School, for their 2012 Medicine X conference. (For that little escapade, I got editorialized by Esther Dyson as someone who was wanting to pass the buck for being fat.) 

And therein lies the rub. We want to find people to punish and blame. We want to skewer people for "giving themselves" type 2 diabetes. 

This is not an abnormal thing. It's actually a part of human nature to want to find vindication for issues -- it's a form of 'negative altruism.' The problem is that the social dialogue that has been crafted in the media, and in part thanks to illness advocacy organizations like the ADA, various medical groups, and those who want to exploit the obesity and diabetes medical communities -- has been centered on discussing obesity and diabetes as though they were a crime against society (i.e., obesity and diabetes are going to bankrupt the economy, destroy the healthcare system, our children, bring governments to their knees, destroy third world countries, bring a second coming of Christ, etc.) So, people with either obesity or type 2 diabetes, are not seen as persons struggling to take ownership of their health issues -- but as people failing to take accountability for a crime against society. "Be accountable for your health," they say. Obesity and diabetes are not seen as personal struggles for personal health ownership -- but as a moral failing of the individual, a crime against society, and as a justification for social outcasting.

This is a HUGE undercurrent in the diabetes dialogue at large! 

It colors the mindsets of many an educator, clinician, registered dietitian, media or TV personality, people trying to sell us goods and services, and of course... persons presenting new technology at a conference like Medicine X. It's a problem. It's a HUGE problem. And when one addresses such a problem, one is portrayed as though one were trying to pass the buck for being obese, or having diabetes. There's a certain self important arrogance about it all... If I point out your moral failing for having 'given yourself diabetes,' then I must be a more moral, and worthier, contributing citizen to the society at large. 

Now, this blog post is not about whether or not one can 'give oneself' diabetes. That would be an entirely new blog post -- and I think I've spoken on that before... My overall view on whether one 'gave oneself' diabetes, however, is that it's IRRELEVANT. Yes, it's irrelevant. Once a person has diabetes, whether or not they 'gave' themselves diabetes is, quite frankly, irrelevant. One can analyze a person's decisions and life style choices till the cows come home... but once that person has AIDS, cancer, diabetes, heart disease, etc... is it now time to start treating them without respect, or dignity? Should we spit on their faces, and socially mock them while at the same time claiming to try to help them? "I'm going to help you, fatty, because you can't help yourself! You have no self control, and you can't stop eating!" 

I think many misunderstand my words here, when I speak of patient dignity. Patient dignity is NOT a patient passing the buck; it is not a patient not taking ownership of their health... Dignity simply means treating someone with a certain basic level of respect for being a human being in the midst of a trying, and challenging situation -- whether of their own doing, or not. We are all human; none of us is above the struggle to make the best choices. Though this is another topic worthy of further exploration in a different blog post, the food choices many of us make day in, and day out, cannot be completely and genuinely labeled as 'mistakes,' for they are the product of our programming as children, as members of some particular society, and as mammals evolved (thanks to natural selection) to prefer more nutritionally dense foods, especially in order to better face periods of famine. While many have had the blessings of genetics, and a healthier food environment overall (familially and culturally), it takes enormous effort to change oneself as an individual, because it is not simply a product of will -- it is a product of reprograming, and reprogramming is HARD. You aren't just fighting your family's bad eating choices, you are also fighting millions of years of evolution! So it is thus, unfair to treat these issues as though they were black and white, and as a people's moral failings, or as a crime against society. Also -- the person with type 2 diabetes is NOT accountable for their health to you -- so get over yourself. Type 2 diabetes has many different triggers (not causes), of which obesity is just one of them, and the others are not quite as uncommon as people want to think. The scientific and peer reviewed studies showing this are there -- but they seldom get public light, because they are NOT media-attention worthy. Sensationalism is simply what sells. 

All of these things aside -- the overall goal of ANY health initiative by any group is to make positive change. But if we want to help a patient community to make positive changes toward a general health improvement, what we want to do is focus on that 'positive' word. Putting the word "skinny" in front of your company's marketing, cracking jokes about a community's obesity or bad eating habits, how they gave themselves diabetes, stereotyping, claiming diabetes can be cured (or blaming people for not curing themselves), turning them into a 'meme' or down talking to them is NOT going to make positive change. Instead, all it will create is an underculture of social pariahs who are not just denied services and tools, but who do not seek the necessary medical attention they need, the tools and education they deserve, or the new lease on life that they could have. In other words, the culture we have NOW.  

If you make it too embarrassing and shameful to have diabetes -- people aren't going to work toward not getting diabetes... People are still going to get diabetes, and they are going to die in silence, from diabetes. 

In the end, the person who'll end up costing more to a society is not the person with diabetes: it is the diabetes bully. 

The Diabetes Funk

One of the wonderful things of having a blog is that, often, people ask you deep questions; deep questions which you may be working towards resolving, yourself... (unbeknownst to the reader) thus, giving one ample opportunities to think "out loud," if one could, on the internet. 

I'd like to address one of those questions...

It's a particularly common one. Many people ask me this question, and it's truly one which is bound to come up in a person with diabetes' life sooner or later: "How do I get out of a funk??? Can you point me in a direction to get my eating back on track?"

I think it's safe to say, this question has no easy, or simple answer.

Whenever we get into a funk, we are in many ways, tired of the burden we have to bear. We have to come to grips with that, and acknowledge it, before we can even begin to understand how to fix it.

We have to recognize that we are tired... 

In particular, with type 2 diabetes, we are tired of having to guard against an invisible monster -- who much like the boogeyman under the bed, or inside the closet -- seems as a figment of our own imaginations. That's the big problem with pre-diabetes and type 2 diabetes -- particularly, at the stages where we have no complications, or can manage with just diet and exercise, or even with some oral medications. How does one keep being a lookout for something that never seems to show up? How can one take it seriously? Why does one need to keep taking pills for something that doesn't seem to show up? It seems a bit hard to believe that the minute we stop being a lookout, something will show up. And then... outsiders don't help. They can't see anything serious, either, so many egg us on to just 'enjoy life,' or to quit being 'melodramatic.' "Come on, it's not like you have cancer."

This particular dynamic makes it hard to commit to making serious changes in one's health, particularly when one has had a lifetime of other choices etched into our internal scripts.

We have to recognize that this is real... 

Sometimes, we forget that the point of the exercise is NOT the waiting for something to show up -- but to intimidate the something into NOT showing up. It seems as a futile exercise with no rewards. But... if I shine a light in the closet, well, the monsters never materialize. The child never asks "But what's the point of this flashlight? I never see monsters in the closet, so why should I need it?" No. The child merely reasons "the flashlight scares the monsters away, and keeps them from coming." The things we do... the exercise, the diet, the medications. They all come together, in one big, powerful flashlight.

We can change part of our mindset by simply changing how we ask the question.

Now, how sensible would it be... if a person with HIV decided that all their treatments were pointless, because AIDS was not a real threat (somehow)? And we all understand how nonsensical it is for a person with a deep mental health concern, to forgo medications, because they now feel well... But it is, in essence, the same dynamic. We are all fighting to keep something larger, at bay, which is as real as full blown AIDS, or as real as cancer. In fact, it is so real, that diabetes kills more people than AIDS and breast cancer, COMBINED.

Yet, people like to speak of it as if it were a mere inconvenience -- like some kind of bunion on your foot, that bugs you when you walk... when it's more of a darker, more sinister situation. I'll save you the metaphor... I'm sure you don't need it, right now. But I'm sure we've all been there, and thought deeply about the darker sides of diabetes.

We have to recognize that diabetes is scary... 

Especially when people are always gracing us with stories of their Aunt Jenny, who lost her foot, or their Uncle Bob, who had to go on dialysis. Diabetes can instill a serious dose of fear into those who live with it, and who struggle holding up that flashlight into the closet -- often making us feel we're doomed into an uncertain future. We get tired, we don't want to face reality, and we get scared into inaction. And it's probably because diabetes is more like an endless night, and the flashlight eventually needs new batteries.

So we fumble. 

We fumble, and we won't eat 'right,' or we won't take the god-awful medications, or we 'fudge' the insulin. We want to pretend normalcy, again. We want to believe we live in a world where we are not the ones with diabetes. Or, perhaps, where we sinned and then got diabetes. But... why shouldn't we be the ones with diabetes? Do you know of anyone else more worthy of having diabetes than you, or I? More deserving, somehow? Who had it coming? What makes someone worthy, or not, of having diabetes? Or of having any disease? The answer is nothing. Both birth, and death... happen to all of us. The number one risk factor for getting ill... is living. And if you enjoyed your living, thus far, make peace with it. Don't somehow, 'forgive yourself',' as if you've erred. You haven't. No. Make peace with it. You lived, you loved... and that's what we ALL do. In our own way. Now it's time to live differently. To enjoy differently.  

Diabetes is not a judgment on your previous life; it is merely, a different life. In many ways, coming to terms with accepting diabetes, is coming to terms with our own mortality, for managing one, is preserving the other. 

And we have to strive to preserve life, to enjoy life. To take life one step at a time.

We have to recognize that it takes baby steps...

It takes baby steps to accept our life, our mortality, and the things we need to embrace to preserve that life. Managing diabetes is an exercise in self-love. And self love is something that takes a great deal of patience, and self-awareness. 

There are a few things one can do, such as:

• Start small: Seek to make one small change a day, and focus on it for an extended period of time. Perhaps that change can be as small as taking your medications as prescribed, until it becomes an innate habit. Or, perhaps that change can be going out for a small walk around the block, every morning... Maybe even just having ONE meal a day in which you have a non-starchy vegetable. You get the idea... 
• Work on other projects: Often, when I feel my health life is a mess, I simply go and deep clean the living room, or the bedroom, or the bathroom... or I organize the kitchen. It seems silly, but it often helps give me motivation to take on almost anything -- and put it back in order. Plus, it helps give me some immediate victories to focus on, and not look for the constant 'far away' victory of 'not worsening my diabetes.' In essence, I shift the focus to something else, more immediate. And it's silly, but it helps me feel a bit whole. It's a great big victory when one has cleaned out an entire closet full of junk! So... shift the focus.
• Give yourself time off: Diabetes is like a job. Diabetes IS a job. It's a 24/7 job in which you get no time off, and constant worry. You're meant to always watch your health, mind what you eat, and test, test, test... always worried the boogeyman is coming through the door. We tend to get very strict with ourselves -- jump on all manner of fad diets, cleanses, and various things -- because we want to fix the problem NOW. (It's a leftover problem from how we deal with weight, and obesity, and they don't work, and they are wrong.) Look... even skinny people let their hair down once in a while. Schedule one day a week, where you let yourself have some kind of fun, with yourself -- or friends and family -- and look forward to it. You can have a slice or two of pizza... if you like. The world will NOT end, and your foot will NOT fall off. 
• Do not judge yourself: "I can't believe that wimp's been running that marathon for 10 miles, and he's already tired! Let's berate him until he makes it to the finish line!" -- said no one, ever. Diabetes is a marathon. You're going to get tired, emotional, upset... and sometimes make bad decisions. IT'S OKAY. Tomorrow is another day. Recognize and accept those feelings. DO NOT ABANDON YOURSELF. Simply acknowledge yourself... and see what you learn! Tomorrow is ALWAYS the beginning of a brand new year, not January 1st. 
• Don't hide: Find a support system. I know... family, and friends, often don't get what we go through. But if you're reading this blog, you're probably already a bit familiar with the diabetic online community. In it, you can find lots of people who like you, and I, are going through this struggle. You can vent to us! We know, and we can relate. There are a lot of places where you can read through people's sincere journeys of struggle, and hope -- or where you can read others' questions, and learn from the responses they get -- even if you want to remain anonymous. 
• Ponder the benefits: Do you like feeling good? Do you like having energy? Do you like feeling confident that you can set, and complete goals? Do you like not getting sick as often? Do you want to have health and energy for your family? I know I take these for granted more than I would like, and when I do... it's easy for me to get into a funk. 
• Seek appropriate medical advise: Find a medical team that is willing to work with you, and to educate you. If need be, find a therapist who has experience with patients facing chronic health conditions. Diabetes is very much a psycho-social health condition, as well as a physical ailment. It's very hard to make progress when you work with people who seek to blame you, or leave you off on your own, with few tools to work with. This also goes for managing any side complications you may have, which may add to the burden of diabetes, such as hypothyroidism, depression or carpal tunnel worries. With carpal tunnel, for example, a good doctor can set you up with overnight braces, to keep pain at bay, as well as with a steady Vitamin B6 therapy to help reduce inflammation. Proper hypothyroid medication can also help reduce depression issues. And -- it's important to mention -- that reducing blood glucose levels helps improve ALL of these conditions to some degree, or another. 
• Seek to learn about 'the funk': There are quite a few resources, available, from persons going through 'the funk,' which can help you be better prepared the next time you feel you might stumble. The goal isn't so much 'averting' a stumble -- but learning from it, and getting back up!  
• From vlogs, to blog posts... We like to call 'the funk' diabetes burnout. 
• Tips to Help Beat Diabetes Burnout - #16
• “Five Ways I Got Over Diabetes Burnout”
• A few books you can read are: 
• "Diabetes Burnout"
• "Emotional Eating with Diabetes"

As a person living through her third year of a type 2 diabetes diagnosis, I am far from being an expert in these topics. I struggle along like a blind man, in a dark room, trying to find a black cat. I have to constantly remind myself that, though I may know how to play the game, I need to actually play the game. I hope that, even with all the things I have said here, just the thought of knowing someone else out there is going through a similar battle... is enough of a wind beneath your wings. 

It's certainly given me an excuse to ponder some of these things... a bit more than I would like. :)  

Metformin and PCOS: Taking the Plunge... with Googly Eyes

"It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all." -- J.K. Rowling

I've been on every diet, I think. Every way of eating, or not eating, or thinking... or approaching. I've had the most success with intuitive eating, and with mindful control of carbohydrates, or lowered carbohydrate eating... and I stick to that.

People will say do this, do that, do the other... you're not doing it right, you ought to do x, y, and z... (while they ought to shut their pie holes.)

I've been on the chicken and lettuce diet, the LA diet, the beat juice diet, the LA Juice Fast diet... The 700 calorie a day, 36 grams of carbohydrate starvation diet... Weight Watchers, Doctor's Weight Loss, etc, etc...

You name it.

But with intuitive eating, and lower carb eating, I've lost the most weight and kept the most weight off long term -- AND, been happy.

Time passes by, however... and not in vain. I'm no longer 15.

Polycystic Ovarian Syndrome is taking it's toll on me, and while I've fought hard... with exercise, lowered carbs, birth control, and supplements for 20 YEARS.... I am now ready to admit that I need some help with it, and start a regular course of Metformin on top of my birth control regimen, and my Inositol.

A lot of people might see this as some sort of failure, or disappointment, but it's not. It's just a next step in management -- and in GOOD health. And my blood glucose numbers are fine, actually... But the hair that keeps camping on my face (while leaving my head), the continuous acne, darkening Acanthosis Nigricans around my neck, and the weight I've been putting on are NOT. I have MORE than paid my dues... and I'm quite happy to accept some help so that I don't spend more hours than I need to plucking hair. >:S

I don't feel bad about this decision; I actually feel quite relieved... I feel like maybe my ovaries won't get crushed under this weight, and I might have a chance (not that I want to, right now) to have a brat or two, one day. Who knows.

Or... maybe I might find a man who loves me and gets to see me while I actually still look like a woman -- and not, you know... like Homer Simpson. (Though there might be men out there who like the Homer Simpson look... Again, who knows.)

In any case, I am officially on Met... and no, my goal is not to get off of it, somehow. I will likely never get off of it. Even if my blood sugars are perfect; even if I weigh a 100 lbs. PCOS is a vicious disease... And in these 20 years, I've been so many different weights, it's not even funny. 170, 128, 190, 142, 248, 170... I know it's not going to go away, magically, with the next Dr. Douchebag's Book of Eat Green Raw Crap From the Ground, and Cure All Your Ailments with Monkey Poop.

So... why not do the NEXT best thing? Yes, I know you know...
PUT GOOGLY EYES ON THAT BIG ASS BOTTLE OF METFORMIN.

One should always put googly eyes on things one is hesitant to trust 

Take that, bitch. Ain't no one gonna make me feel like I'm downing horse pills. lol I will laugh at you... every time I see you. xD Bwahahahahahahaha.

What's in your pill and supplement arsenal? I'll show you mine, if you show me yours...

Awareness, Acceptance, and Perseverance

I really hate year end resolutions. Call me a little full of myself, perhaps, or a little 'pessimistic' if you want, but I find it beyond silly how people don't realize they're being played like puppets, every January. I mean, really? Come on... How can you not tell?? You can't seriously believe you can get on a cereal diet, a milk shake diet, a soup diet, a sprinkle crap on your food diet, a yogurt diet, smoke water vapor cigarettes, etc, and think that all your weight/health issues, whatever else, will magically just melt away... Or paying $200+ for some incredibly UNREALISTIC exercise regimen with some guy, ripped beyond belief, who probably DOES NOT use this video at home, and spends 20 hours at the gym, every day, GETTING PAID to be there.

What's worse... is that people have changed the 'motto' from "resolutions," to "goals," thinking that by changing the name, and breaking down the resolution into goals, this is somehow going to help. Or... giving it silly acronyms to make it easier to remember, or deal with. People, please! Your life is NOT an acronym. I can't even remember what DSMA stands for, half the frigging time! SMART goals my ass! How about actually being SMART about how putting ourselves on the spotlight has never worked for anyone? Spotlights are for people who pretend: Actors.

Let me see, how can I describe it a little better for you... I remember when I was 7 years old. The weight issues related to my PCOS had been taking quite the foothold in my body, and clothes were really not fitting me so well. I remember visiting shops looking for a First Communion dress, with my mother... and she'd openly, loudly, complain to the store clerks how she was tired of me being so overweight and me not being able to fit into things. Then, of course, the clerks would chime in... sharing some nonsense, or unhelpful comment or another... like "Honey, your mom wants to be able to dress you like a little princess, so you need to stop eating, okay?"

I am sure you have your OWN equivalent of being embarrassingly put on the spotlight.

Well, when you embrace a new year's resolution, goal, or what have you, you are doing THE SAME THING to yourself... It's very similar to you putting yourself on the spotlight, to either your own self perceptions, or the whole world: they'll constantly ask you how your goals are going, if you've stayed on them, if you've cheated, try to get you to cheat, or POLICE your behavior as much as they can because they will all see themselves as IN THEIR RIGHT to come and make sure you are being a GOOD GIRL. What's worse is that you end up feeling like hell, or embarrassed in front of others, when you do stumble, and ruin that "perfect" new year slate.

Let me suggest to you... an alternative: Living life... with a little awareness, acceptance, and perseverance. 

Greaaaaaat, another empty motto, you might think.

Except... It's not a motto.  It's reality. If you stop, and pay attention, life's themes sort of start revealing themselves to you, one at a time. Yes. Life has themes. And those themes require, you guessed it... awareness, acceptance, and perseverance.

If you are binging, ignoring your diabetes, if you are... smoking, not exercising, or whatever else that binds you... Those behaviors are NOT your themes.  The themes are the underlying attitudes, and 'truths' you have allowed yourself to believe ABOUT yourself and life, which are enabling your behaviors.  And you can't fix those on any given 1st of any January, on any given year. It is SILLY to try to spend all kinds of time mopping the basement, if you don't first fix the leaky pipe.

If we are not aware of our themes, we can't fix them. In order to effect positive change, in our lives, we need to have an ongoing awareness, and an ongoing dialogue with ourselves, and an ongoing acceptance. Do NOT abandon yourself. 

We need to come to points, and places, where we accept our emotions, and try to help our inner persons cope with WHY we feel those emotions. I'm not talking about silly little 'goals' here, like "I resolve to put the toilette lid down, every time, from now on..." I am talking about the things that form, and shape, and cement our daily lives... into the WHO we are, right now... and tomorrow. 

If we don't know our themes, we can break that resolution down into 20,000 goals, and we are still destined to FAIL and be right back at square one, next January. I KID YOU NOT.

Listen to me, here, people...

• Your internal dialogue... is not to be shared with unhelpful people. This conversation is between you, and yourself, and perhaps the 20,000 other people who might read your blog (God help me). 
• Your internal dialogue has no beginning, and it has no end. It is happening right now, as we speak, yet you may go about your daily life ignoring it.
• Your internal dialogue is about perseverance... but once you learn a truth, you cannot unlearn it. It's like reading a book. Once you learn a deep truth about yourself, well... there's no turning back. It sort of magically sets you free... (I used to love Burger King. Burger King gives me EXTREME gastric upset, probably the equivalent of ten Metformin pills. After 4 or 5 episodes of this, I can guarantee you I shall NEVER unlearn this. It is NEVER up for debate.) 
• EVERY day is a new year. Seriously. On any given day, you can say to yourself... "A year from now, I'll wish I would have started today." There is no reason to assign yourself a magical start date to pass/fail yourself like a child needing approval from Mrs. ShameMyself. 
• A new year is NOT meant for these things! A new year is meant for you to EXAMINE your life: the things you are thankful for, the blessings you have been granted (by life, God, however you see it), and the LESSONS you learned from your trials and challenges, and your mistakes. YES, YOUR MISTAKES. Be thankful for those mistakes.Those lessons are probably the things that will help you with your life themes! Those lessons have already changed, and shaped your life and behavior, for a better 2012, without pre-assigned resolution. If you resolve to do anything, anything at all... Resolve to really EXAMINE your life with some amount of prudent, sober acceptance, every new year's eve. Heck, EVERY DAY. 

Life is not about those boxes people want to put us in. Don't be the idiot debating whether the glass of life is half full, or half empty... when there's obviously more in store, in the fridge.