I love my Christmas tree... I light it. I enjoy it's silent cheer; it's proud glow. Perhaps, a memory of a 'perfect' childhood, at least, in my own imagination. The room is messy, but the tree makes it come to life. It brings a certain peace to my heart. It makes everything... 'perfect.' I probably won't take it down for a few more weeks.
Peace is a little hard to come by, these days... The worries of adulthood, and the insecurities of employment and finances, really take their toll... on one's joy, one's dreams, one's relationships, one's family, you name it. Still, I sit, and wonder... at the 'magic' of it all. When folks sort of stop paying attention to the "mess" in their lives, for a moment, and just stop for some peace.
And peace, hope, growth, and prosperity is what I wish for all of you, this holiday season. I wish all of you to be BLESSED in one way, or another... And to make NO resolutions.
NO RESOLUTIONS. Instead, look back upon the year, with bittersweetness; say goodbye to friendships that are parted, and welcome new ones... Say thanks for all the hardships, lessons, and opportunities life has awarded you, and for all the mistakes you have made. Especially, for all the mistakes you have made. Cheer on the challenge a new year will present, and be hopeful for what's to come.
Be hopeful...
That friends and family will embrace, love, and support their fellow diabetics through this hard and challenging journey, without recrimination, and judgment, but with education, and a listening ear.
That diabetic patients receive the respect and dignity every person with a chronic illness DESERVES to be afforded, without gimmicks, media misinformation, doctors selling their profession for fame and a quick buck, and discrimination.
That government, and employers, strive to learn, educate themselves, and accommodate diabetics and their needs, and realize that we are just as capable, and just as willing to do a good, and proper job. That we can be just as productive, and careful good citizens, as anyone else.
That doctors will EDUCATE themselves, and not make insensitive comments or unfair comparisons, uneducated assessments, guilt trip patients with the blame game, give uneducated guidelines, and endanger patients lives. That they become aware of the HUMAN EQUATION, and grow some bedside manners.
That patients presenting diabetic symptoms will NOT be ignored until it's dangerously late, and they have developed irreversible complications.
That patients will be properly educated at diagnosis time about their disease, and ALL their treatment options, and not left wondering in the dark about what to do, or how to make adjustments, and NOT DENIED access to proper specialists, such as endocrinologists, certified diabetes educators, or dietitians, but be left with only limited options such gastric bypass for those who are overweight... either because of professional ego, or because of insurance restrictions.
That patients will not be diagnosed based on biases -- but that every person out there presenting diabetic symptoms be given COMPLETE testing to determine not just whether they have diabetes, but where their insulin production stands, and their type of diabetes, REGARDLESS of their age, or their weight, so that they can receive the PROPER CARE they need to manage their condition, and educate themselves without much danger, second guessing, grief, and confusion.
That patients will receive proper access to medicines, and NOT DENIED access to insulin, needles, or test strips. That patients be allowed to test as often as THEY deem necessary. It is THEIR right to be vigilant, and it is THEIR right to stay alive. Test strips might seem expensive, but they are not, in comparison to the costs of the complications of poorly controlled blood glucose levels.
That patients will receive proper access to any care they need, and any tools to management they need, including pumps and CGMs, and diabetes alert dogs, without exorbitant expenses, or insurance games; in fact, that insurance companies will one day not be necessary.
That diabetic research organizations devote enough resources and work into finding a true CURE, because we are not a lost cause once we have gotten diabetes... We are just as important as those they hope to help avoid the risk of getting diabetes. ALL of us deserve a TRUE cure. Not gimmicks.
That together, we can tackle the challenges we face because of our many health concerns, and realize that we are all the same... Just folks wanting to be acknowledged, and heard; folks wanting to be UNDERSTOOD.
This is what I long for, hope for, and work for... in the year 2012... It is my Diabetic Manifesto. If we work together, we can slowly turn the tide... Won't you join me?
(I am sure glad that, in my culture, the holidays last a little longer... At least for now, I'll have a little more hope, and a little less mess.)
I heard you were recently diagnosed with Type 2 Diabetes, and that you may have some mixed emotions right now (sadness, shock, anger, guilt, shame, denial, grief, fear, just to name a few...), and I just wanted to let you to know that it's OKAY to feel the way you do. Life, invariably, takes us through periods of transition, of growth, of personal reflections in which we must face, not just who we are, but our own mortality as well. This is a normal part of life: it's called the human equation. It can be frightening, to say the least... but you are NOT alone. No matter how "perfect" some of us humans may seem, we ALL go through this. Life plays no favorites.
No doubt you are already searching the internet left and right for all manner of information on how to best care for your diabetes, and may even have already developed a plan of action. If you are like most Type 2 patients, your doctor probably put you on a course of Glucophage/Metformin, without many other indications, and just sent you on your way. This is very typical. At least, here in America, most doctors really don't sit down with patients to find and discover what their needs are, what their BEST tools for diabetes management should be, what their individualized blood glucose goals should be, nor what their OVERALL TREATMENT GOAL should be.
I want to commend you for taking the initiative to take the upper hand in managing your condition. It takes guts to face a chronic health condition, and take a long hard look at ourselves, and what may need changing. With that in mind, I want to warn you... that while there are many voices of reason out here, in the internet, and many well meaning voices, there are also many confusing messages. Now, I'm not trying to say here, in any way, that you shouldn't do your own homework... oh, no! We would be in a hard place, as Type 2 Diabetics, without the internet. PLEASE DO YOUR HOMEWORK.
What I am trying to do, though, is put it all into a little perspective for you.
You see, the voices of the internet are many...
Some are naive, uneducated, patients... optimistic, and with their hopes misplaced.
Some are well intentioned, go-getters, who may see the world as one of "black and white" solutions.
Some are from the "ignorance is bliss" bunch. They never, ever, question their doctor, or dietitian, ever.
Some are trying to sell you something -- a book, a diet, a supplement, an exercise regimen or way of life, etc.
Some are the naive, uneducated, misguided, optimistic patients, mentioned above, who have fallen for the ones who were trying to sell you something...
Some are patients, who like you or I, started with little... and have now lived with this disease for many, many years. They have seen the good, the bad, the ugly, the unrealistic and unhelpful, and the scams... They are healthy, they live and thrive, WITH diabetes, and they are doing just fine. (Latch on to these people.)
...and while they all have different agendas, they are ALL trying to tell you exactly what your doctor should have sat down, and told you:
What your BEST tools for diabetes management should be;
What your individualized blood glucose goal should be; and
What your overall TREATMENT GOAL should be.
Now, we are ALL different... And I cannot, and will NOT pretend to tell you what your BEST tools should be, or what your individualized blood glucose goals should be. And NO ONE should, either. Your health is different than mine. You may have more challenging health hurdles to clear than I have, or you may not. And you should DEMAND to discuss this with your doctor, at length, based on your own research. As they say, your diabetic mile may vary. Your shoes, your trail, your journey.
There is one thing, though... that I can UNEQUIVOCALLY tell you: What your treatment goal should be.
Let's start by what your treatment goal is definitely NOT:
Getting off of oral medications
Getting off of insulin or avoiding it
Losing weight
"Reversing" diabetes
The first three are POTENTIAL symptoms of what your unequivocal, overall goal should be. The last one is a fallacy, and a buzz word. One may potentially "reverse" some symptoms and complications of diabetes, but not the diabetes itself. People claim there's much debate on this, but there really isn't... Just watch as this M.D. sidesteps the entire term, in this Q&A column: http://health.msn.com/health-topics/diabetes/taming-diabetes. But I digress...
We focus far too much on the pretending we can cure diabetes, especially by avoiding the "evils" of oral medications, and the "evils" of insulin, or the "evils of being overweight," to understand that this one goal far outweighs them all...
That goal is GOOD GLUCOSE CONTROL.
In your war on diabetes, THIS IS the goal. IT. IS. THE. GOAL.
Do not lose perspective. Do not feel discouraged, and give up, if you have weight to lose, and you haven't lost all of it...
Do not avoid seeking help, if you need it. While many medications have their downsides, and side effects, they also have some upsides, and they are not a shame or a failure, when needed. If after changing your lifestyle, diet, fitness regimen, eaten nothing but chia seeds for two weeks, ran marathons, etc, etc... you find that you still have blood glucose control issues... it's OKAY. Explore your treatment options with your doctor.
STOP FIGHTING THE WRONG BATTLE.
We age, life passes by... This disease is progressive. Should the heart patient feel bad for taking lithium? Should the cancer patient feel shame for needing chemotherapy? NO. Of course not!
The enemy here is the heart disease, the cancer, the HIGH BLOOD SUGAR. Do not let yourself stay in a state of danger because you were pushing for the WRONG goals...
Remember... Your shoes, your trail, your journey. Your diabetic mile may vary... But your number one, overall, UNEQUIVOCAL, treatment goal... will NOT.
The things you say, and do, have an effect on people. This one should be a "no brainer," right?
Well, not quite.
At least... not quite for folks who see you as "something to crusade against." A faceless mass, or a faceless evil, or villain, that it's okay to heckle, taunt, or verbally assault for the "benefit of humanity, at large," whatever that might be. And that, I'm afraid, is what the internet has done to Type 2 Diabetes and obesity. Coupled with anonymity, the internet has sort of given a voice to the uneducated, the predators and snake oil pushing charlatans, the frustrated, and yes, even the downright abusive bullies among us.
Quite honestly, it is NOT easy for me to be active online when people left and right are trying to sell me books, supplements, Chinese herbs, or whatever the latest craze is to "100% cure" my Diabetes. (Diabetes, of course, has no cure... and in my opinion, this is dangerous and should be against the law. But alas, the FDA doesn't give a rat's ass.) But it's even more difficult when you THINK you have found a "haven" from the mean-spiritedness of the world in a Diabetes page, group, forum, or social community.
As a newly diagnosed person... you may think others are kindred spirits. I am sorry to say, many times they are not... and we need to learn to be emotionally mature, and confident within ourselves, to be able to handle these situations (which, of course, we are not, when we are newly diagnosed.)
Just yesterday, a well known diabetes site asked the question "Medicare announces that it will cover weight-loss counseling for the obese, but critics argue it will make little difference. Who's right?"
I'd love to say polite debate ensued... But it was mostly a "blame the fat, lazy person" tirade.
"Do we really think "counseling" will help the obese? Really? If you're obese, it's due to a lack of discpline and complete laziness. NO EXCEPTIONS TO THIS RULE!!!"
"I don't believe any type of counseling will work for people over weight. You either truly want to loose weight or you don't, and if banding your stomach doesn't work then counseling isn't either."
"Can you honestly tell me that people don't know eating McDonald's every day isn't a good idea?!"
" Weight loss is really self control & few people really have it..."
People are raging at many things; things they don't understand, or think they understand. It really reminds me of the Cold War, and the "Red Scare." We just have these simplistic "notions" of what's the enemy, and what's "right," and what the tv tells us is wrong, and bad... and we run with them. We think, "it's okay, these are 'faceless people' on the internet... We can hate them. We can abuse them." It's easy. Doing these things doesn't entail you to actually WORK at being a HUMAN BEING; to actually be an ADULT, and use your empathy skills.
Doing these things keeps you from seeing people as mothers, fathers, brothers, sisters, spouses, other people's loved ones, other people's children.
And worse yet, we may think "these people have taken from me, and my loved one...," and we fail to see how the system has failed EVERYONE, and not just us. Instead, what we are doing is PROJECTING our own bitterness at others. We have developed Diabetic Penis Envy.
I am sorry.
I have to call it something funny. I have to call it something funny, or else I'll cry.
I'll cry when I see fellow diabetics verbally assaulting other diabetics because they are HUMAN and STRUGGLING, and they are brave enough to share their broken pieces with the world. I'll cry when I see mothers attacking other mothers over how they care for their child... I'll cry when I see someone putting down another person's personal loss "because they had it coming to them... they were Type 2."
I'll cry over your bitterness. I'll cry because I know this disease has blinded you. It has blinded your heart. You either found a little private island in the middle of the sea, and wonder why no one else has gotten there, OR you are exiled in the desert, with nothing but mirages in sight, and no respite. You either judge for attention, or want to be the victim, for attention.
My heart goes out to you because I know it's not about me. No matter how much you try to make it be about me, or about any other type of diabetic there is... it's not. It's not a war of types. It's about YOU. It's a war WITH YOU. And it shows when you write jokes putting down folks, when you character assassinate people who may be struggling with their control, or their weight, or their kids, or when you try to make it sound like your type or your way is the paradigm of good health. It's not. We all need to work on something.
If we want to help unity in our community... if we want to help diabetics out of the hole of shame and fear they may have... And help them know it's OKAY to be them... then we need to help GUIDE and SHEPHERD them... I would like to ASK two things:
I would like for communities to develop a ZERO tolerance toward judgmentalism, abuse, abusive language, and bullying of anyone, but especially obese persons and persons with Type 2 Diabetes, including warning folks, removing their comments, posting discussions redirecting attitudes and educating, and up to, and including banning; AND
I'd like especially abusive folks to be directed to counseling. We NEED to be reminded that we need help. If it's 2011, and we are adults, and we are still bullying other adults, especially ones with a chronic illness, we OWE it to that person to let them know they NEED COUNSELING. And their bullying behaviors will NOT be tolerated. It is, quite frankly, DISGUSTING.
The First Amendment is for the GOVERNMENT to not invade our freedom of speech; it is not for a community to allow people to bully other people. EVER. Directly or indirectly. Until this is fixed, you will see many people join... and then fall off, and not participate. It gets old.
Don't just call for change in our communities... Help ENFORCE the change; BE the change.
And yes, friend... if you read this... and you find yourself a little bit bitter... It's okay. I'm often, a little bit bitter too.
I add this sort of cruel, and yet "funny," video... as an apt comparison in 'reactions' to my "gift" of Diabetes.
But I think it was just one of those "I'm really unhappy with my body, so I'm just going to go on another diet," kind of moments. However it happened, I had been referred to a nutritionist, or dietitian, or whatever the heck she was, by my Primary Care Provider (PCP) at that time. (My PCP... a man who never cared to talk much about certain things. Including, telling me my blood sugar was high.)
I sat there, waiting in an office... in the usual weirdness of waiting for one of these folks. Fake plastic foods lining wall to wall shelving, and giant tomes and texts which I am not entirely sure had ever been read. This office was the size of a small bathroom, sterile, and with dark wood paneling to boot. A large, round table, took up most of the room, while a cluttered desk sat at it's opposite.
"So, what exactly is it that you want?" -- says the woman... doctor, who? I am not sure. She's wearing a white lab coat, and it's making me rather uncomfortable. I thought this woman was just going to help me find a diet plan... why is she being so curt? And why the heck is she wearing a lab coat? You don't need a lab coat to write a frigging diet plan!!! Rather shocked, I explain to Doctor Who that I want to lose weight, that I am not happy with my body, and it's time I got things figured out, with a little help.
Doctor Who stops to take a very long, stern, look at me. She demands to know what my life is like, and what I do. Of course, at the time (2002), I was in employment limbo -- much like I am now. I lived with a large, religious family, active in the local college campus community, and I minded their kids in exchange for housing. I lived in their basement. Their dark, dank, gloomy, depression fit inducing, basement. I also worked a minimum wage job, with grueling physical labor, and even more tedious hours. I was at great odds with myself, and with my faith, and to top it off, the family and church I belonged to at that time were extremely controlling, and extremely judgmental. One of those types of churches that need to know and control every single aspect of your life, from what to study, to whom to marry. How I got to be in that state, however, is a story for another day.
"I am NOT giving you a diet. You don't need another diet," said Doctor Who, in her Indian accent... really without knowing much about me. "Then...? What am I supposed to do? I mean, I AM paying to be here, after all..." Her features soften, only for a moment, just enough to tell me that I have an eating disorder. "A what??" ... "Yes, an eating disorder. You don't need another diet, and I'm not going to give it to you."
Stunned, I just sat there. I'm nowhere near skinny enough to have an eating disorder; in fact, I'm quite overweight, even obese. Morbidly obese. (By the way, thanks for that, Polycystic Ovarian Syndrome.)
She hastily draws up a chart ...
Explains to me I am living in a vicious cycle, and gives me four rules.
Eat only when you are physically hungry.
Eat ANYTHING you want. Anything at all.
Eat only until you are satisfied, not full.
DO NOT SKIP MEALS.
She then asks that I buy the book Breaking Free from Compulsive Eating, by Geneen Roth, and sends me on my way, though not before telling me that "... but even that won't work, because you're too busy right now, to focus, and need to wait until you're at a better place to make some changes."
Oh. My. God. Who the hell does Doctor Who think she is? I *payed* her to do what she went to college to do... GIVE ME A DIET PLAN. And instead, she gives me a frigging book review, tells ME that *I* have an eating disorder, and spits me out of her office, just like that! How dare she?!?! &$^#^%$@!!
Of course... She was right. She was a total bitch about it, but she was right.
Through much tracking, and tracing, I eventually found the book... because of course, it wasn't an easy off-the-shelf kind of book, either. It was an old 80's book, and it sat on my shelf gathering dust for a good while before I decided to finally crack it open, sometimes just chancing upon segments, and paragraphs, before having the courage to actually read it cover to cover.
Now, this is NOT one of those moments where I tell you I've lost a gazillion pounds (which, at times, I have...), and Oprah comes and finds me, and hosts me on her show... or Dr. Oz... or whatever other idiot flavor of the month happens to be. I am still fat. I still binge. I still get up, gather up the pieces of ME, and keep going.
This is NOT the time when I tell you that that was the most inspirational book of my life; it wasn't. In fact, it's probably one of the cheesiest books I've ever read (and please, never read it while drinking anything... much less soda of any kind).
But it is the time when I will tell you that I learned what was probably the MOST important lesson of my life... and what should probably be the most important lesson of YOUR life.
NEVER ABANDON YOURSELF.
It doesn't mean you are perfect, and will always follow the rules. It doesn't mean you are only relying on yourself. It doesn't mean you won't ever become depressed, nor sad... nor compulsive. It doesn't mean that you need to find 20,000 inspirational post-it notes for your bathroom, either.
What it does mean... is that whatever you experience in life, or whatever it is you choose to do... BE THERE with yourself. Actively keep yourself company. Be conscious and aware. Acknowledge yourself.
Acknowledge and OBSERVE from a non-judgmental place the rhythms and intricacies of your emotions... just observe them. No need to judge them. Turn off the TV, and step away from the electronic gadget.
Do not run away into the occult recesses of your mind while you... ______________. (Enter favored compulsive behavior here, including, not taking care of one's Diabetes.) Acknowledge what it is you need, and seek, and GIVE it to yourself with the REAL DEAL. Not a substitute.
Know that whatever it is we do, we do it for a reason... seek to LEARN those reasons.
Allow yourself to be human, and just learn. Learn from the moment. Learn about YOU. Take life... one second at a time. Life will never be easier, or less complicated, like Dr. Who suggested, so just start TODAY. Start with one moment. One action.
Consider the power of one snowflake... one snowflake every second can lead to a perfect Winter storm. This is YOUR storm.
She stood proudly, next to the small, Thanksgiving pie table, and announced to the world that "This is Liz. She's a diabetic, and every year, this is the ONE time she will allow herself a piece of pie." Great, thanks, lady. Thanks for outing me like that in front of everyone... I really needed a roomful of eyes peering down on me the moment I decide to have a second slice.
My best friend's mother in law really means well. She does. She, herself, is diabetic, albeit she is a lot more liberal with her food intake than I am. I don't think she has a great understanding of what's going on in her body, or that perhaps how her body handles food shouldn't be, entirely, left up to the pills she takes... but at least she tests, and pays attention. At least, that's what I like to tell myself, anyway. She's in her late 70s, has a lot of very serious health problems, a big time smoker, and not at a place where she's open to making many changes. But the fact that she tests as often as she does is really quite great, considering how little information doctors give older folks with Diabetes, and how Medicare curtails test strips. I'm not sure how well she uses the information, though... But she DOES test, and she DOES mean well. Maybe I can credit Wilford Brimley with that.
This whole mess is my fault, really.
When I was diagnosed, I was running HARD on tight control. Two years ago, I didn't really give myself much time to sit through and think on things. The stark images of the last few years of my father's life quickly came to the surface, along with fear, anger, and resentment. I believe it was that same week, and I got a phone call from my best friend's husband asking us to come over for pizza. Kind of embarrassed, I really didn't know quite what to say... except "I have diabetes." They had already planned out this expensive meal, all home made, in exchange for asking my husband to come over and look at their computer, and router. I really didn't want to make anyone feel bad, so I tried to muddle through the meal, tried to manage my numbers, failed miserably, and then explained to my friend that I couldn't have that many carbohydrates, to please try to help me with things like salads, etc., or other low carb alternatives to meals. What's wrong with that, right?
Well, at face value, not much... BUT...
(and there's always a but, with Diabetes... It should be called Diabut, really... or Diabutt in some circles. heh Or just plain ol' PainInDiaButt...)
There can be LOTS wrong with it... If you are newly diagnosed.
For Starters, Diabetes Needs Grieving...
A part of who we are, is really, GONE, and that needs to be acknowledged.
We may not know who or what we are, at that time, but we know that we will NEVER be the same again. We need some processing time to help dig ourselves out of the deep emotions we might be experiencing so that they don't end up marring the GOOD that's STILL in our lives, by being accidentally misinterpreted by others... We don't want, for example, to instill FEAR in others that they can no longer hang out with us, or have us over for dinner. We can be in control, really! Even if it doesn't seem like it at that time... :) My friends love me, but they are quite hesitant to have me over for dinner, and when they do, they bulk up on low carb everything... lol (Thanks, by the way...) Lots of folks WILL ask stupid questions, too; it's the nature of the beast. We need to be able to go outside, without weeping uncontrollably... or murdering people. Once we've had some time to settle down... we can try the experience again, from a place of self awareness.
Diabetes Needs Feng Shui...
Now, I don't really care for new age views very much... (nor about most things, really...) but the notion of Feng Shui is helpful for this exercise. Before you go to the library and start reading up on Eastern philosophy, let me explain a little bit... According to About.com,Feng Shui is an ancient art and science developed over 3,000 years ago in China. It is a complex body of knowledge that reveals how to balance the energies of any given space to assure the health and good fortune for people inhabiting it.
Now... I don't need to be an old Chinese philosopher, to know that Diabetes IS an art and a science; that it is a complex body of knowledge that can reveal how to balance our body's energy (literally, glucose), and our health, and can give us 'good fortune,' for our bodies which we inhabit, IF we take care of ourselves well (most of the time). Each one of us, just like each dwelling, is different and needs to be 'balanced' accordingly. Each one of us needs to find ways to deal with the positive, and negative aspects of our lives... Each one of us needs to learn that in order to be healthy, we need to cheat, and in order to cheat Diabetes, we need to be healthy. That's our Diabetic Yin Yang. And just like it supposedly takes years and years to master Feng Shui, it can take years and years to master Diabetes.
What is Balance, Though?
Here's the problem...
There are a MILLION experts on how you should live your first year of Diabetes, and how to get started, but there are NOT many on how to finish.
Diabetes Needs Realistic Expectations
The balance of Diabetes is in pacing ourselves; in understanding that Diabetes is NOT a punishment, or a call to perfection. In fact, we are perfect in that we are IMPERFECT. We can't show others how to effectively live with this disease until we have a few knee scrapes to show for it.
It's not a NOT a sprint. We say that all the time, but it truly doesn't hit home for many until after a few years have passed trying to actively manage the disease.
If you keep running, and running hard, you'll find Diabetes is EXHAUSTING. For me, this "simple" diet and exercise thing to try to mimic a perfect pancreas might have seemed 'easy' at first, but it takes SO MUCH THOUGHT, and trickery... Yes, trickery. It's like I'm some kind of witch doctor; my mind is FRIED from all the overthinking of simple meals... and all the crappy supplements (and medications for other conditions) to keep things in gear.
You have your spaghetti, as usual... I have it after 12 hours of sitting in the fridge so it can develop resistant starch. You have your spaghetti, with bread sticks... I measure mine dry, before boiling, and only consume 1 serving, balanced with at least 3-4 servings of vegetables blended in.
We take care of ourselves more than ANYONE I know. Aside from athletes, I really don't know many people who are healthier than a diabetic. Constant monitoring, eating well, balancing carbohydrates, proteins and fats, constantly thinking about what we put in our bodies... new ways of making or preparing meals which will cut back on, or eliminate spikes. Constantly working hard toward intangible goals.
Let's be clear here. I believe YOU can do this. I believe WE ALL can do this. It's hard, it takes work, and dedication, but we can do it... But when I say Diabetes needs to be realistic, I don't believe for a second that people don't have it in them to take good care of themselves. This is NOT about not trying hard enough. I don't believe ANY of us is lazy.
But if you have been living with Diabetes for less than a year, there are some things you need to know:
You are NOT Diabetes;
You are NOT grounded, or in "time out," for your previous eating habits (whatever they were);
Your NON diabetic friends are JUST as important as your diabetic friends;
You are NOT your A1C;
You are NOT your glucose meter readings;
You are NOT perfect, BUT you are NOT out of control;
You are NOT your weight;
You are NOT your diabetes management method;
You are CREATIVE, and you can MANAGE, without the need to deprive;
You are HUMAN, and HUMANS live, and most importantly...
NO ONE diets on Thanksgiving.
Everyone who shops Black Friday knows that balancing a checkbook religiously does not mean you can't splurge on occasion, for a Big Screen TV. Neither that splurge will bankrupt you, nor that extra piece of pie at Thanksgiving is going to make your foot fall off, or make you gain 5 lbs overnight.
So, my advise to you... on your second, or third year... is to loosen up. You were in a scary, close call of a health situation, but you're in a place of control now. It's now time to start finding your balance... the happy medium that doesn't cripple you emotionally, but doesn't cripple you physically, either... your Diabetic Feng Shui. Your Diabetic Yin Yang. Oh, and if someone comes and tries to guilt trip you for drinking diet soda, or for not making "fat free" pie, or stuffing... tell them to fuck off.
It's a blue Sunday today; a Sunday marked with gray Fall skies, transitioning into Winter blues. The trees are mostly, leafless, and it's long past the time when you could get away with taking an afternoon stroll outside with just a light sweater. Looking out into the landscape, it's hard to image all this pervasively barren world will come right back to life next Spring.
Such can be the seasons of Diabetes.
There are moments when one feels invincible, unstoppable... committed more than anything in the world, and running full steam ahead. And then there are the not so honest moments; the moments when one speaks to others, gently keeping behind the curtains the deep feelings of struggle bubbling within.
Depression, and other mental health concerns, are probably the most ignored symptoms of Diabetes. Though, quite honestly, it is hard to call Depression a symptom when studies have shown that if you are predisposed to Diabetes, it really doesn't matter which one came first: if you had Depression first, it may very well lead to Diabetes; and if you had Diabetes first, it may very well lead to Depression (http://www.webmd.com/depression/news/20101122/new-links-seen-between-depression-and-diabetes).
Adding to the clinical predisposition for Depression is the heavy guilt burden being heaped upon patients by outsiders, and by what I would call an "Uneducated Doctor Epidemic", compounded with the "Lazy Researcher Virus," and exacerbated by the "Ratings Addicted Media Tsunami."
Seriously.
What comes of all of this is a perfect storm of judgement and derision toward people with Diabetes (indiscriminate of the type.) Not that the type should even matter; NO ONE gave themselves diabetes. No one wants this disease. But it's easier to mock overweight people; it's easier to blame them for disease, and economic burdens. Why else would they come up with such a thoughtless, hurtful, and insensitive term as "Diabesity?" Because it's much easier than having to self examine the health itself of our country... Who wants to look at pollution, pesticides, HFCS, BPAs, FDA guidelines, Big Pharma medicine side effects, and COI within health guideline organizations, when there are fat people we can accuse of giving themselves a disease. (Never mind that 33.3% of Americans are obese, but only 8.8% of Americans are diabetic, and that includes all types.) This leaves most diabetics, frazzled (to say the least), most of the time.
Now, Depression in itself, is a poorly understood, and stigma filled illness. I've had Depression since I was, at least, 12 years old and I can't tell you the number of times people have advised me to just look on the sunny side of life, to accept Jesus, or to just shut up and 'deal with it.' Many people really can't tell the difference between the occasional bout of sadness, and clinical Depression... and just like with Diabetes, few medical professionals are equipped with the tender understanding required to help a patient overcome and manage Depression, or monitor a diabetic patient for symptoms of Depression. What's worse, many people think Depression is a made up, modern era disease, in which people just lack will power... the same lack of will power that led them to be overweight (or eat poor food), and give themselves Diabetes. (Even if these statements are far, far from the truth.)
Even without clinical Depression, Diabetes, in itself, can be depressing for many reasons...
It's just a frightening disease, with many complications and dangers -- some immediate, and some compounded over time.
We have to work HARD to be healthy, without any apparent 'reward.' Most people I know struggle, as it is, when the rewards are very evident (like weight loss, or muscle building, or training for some sporting event)... When people have to work hard at something, every day, so they can avoid 'unknown', 'random' complications they CAN'T SEE happening to their bodies, or won't know about for many years to come... it's like trying to hit a piñata in a pitch black room, with a 6 inch ruler. There aren't many immediately gratifying rewards in this game... And if you do ever get that piñata, you still have to mind that candy.
Some folks work incredibly hard, and they STILL develop complications. Sometimes our genetics are the damning factor in whether or not we develop a bad complication, and this is apparent in folks who aren't even diabetic, and develop many of the complications some diabetics might get, like neuropathy.
Folks who develop complications, often go their medical professionals only to be treated with judgement, and contempt -- told they weren't compliant, and did this to themselves. Type 2 Diabetic patients often get little support from the medical community, are given little to no education, and little to NO tools (such as test strips to monitor their numbers), and then expected to have tight control.
Family and friends are often NOT understanding, and judge from the outside, looking in: they may think life changes should be easy enough (because they're not 'rocket science,' right? -- except, they CAN be lol) and shouldn't burden the patient... yet I can't tell you the number of diabetics (particularly women with diabetes) who end up making two sets of meals, three times a day, because the rest of their family doesn't want to change their eating habits, as well. Diabetics NEED a supportive environment, and supportive families, and CHANGE AS A WHOLE, in order to thrive.
It just gets old. Get up, test your blood sugar, take pills... wait... wait... wait... test, take pills, count carbs, eat, test... exercise, test... test, take pills, count carbs, eat, test, exercise, test... test, take pills, count carbs, eat, test, exercise, test... test... take pills, count carbs, eat, test... Can you keep track of it? Can you do this every day, for the rest of your life? For once I'd like to SLEEP IN, or eat without thinking so much! Can you schedule bathroom breaks in between, for the side effects? Can you schedule exercise breaks, in between work, when you're not at home? Can you plan snacks to stuff in your pockets so you won't go low at work? Remember to pack your lunches, every day, for work, and always get up early enough to eat breakfast, and always pack your own meals and drinks when you go to get-togethers because no one bothers to think of diabetics or those with health needs? Can you remember to schedule all the doctor appointments for your routine care? The eye doctor, the foot doctor, the A1C, the yearly physical, the CDE? Can you remember to have enough strips and snacks when you go outdoors? CHANGE YOUR LANCET. Can you still spare an extra 20 minutes to talk to the idiot who just said you shouldn't eat that candy in your pocket for your lows, or it will give you Diabetes? Are you tired, and annoyed yet? Because let me tell you, it's not fun to be the fat gal at work, with candy in her pocket, because her Polycystic Ovarian Syndrome gives her hypoglycemia, and she unloads trucks for a living, but she has Diabetes... So everyone else needs to have a say in that. And oh, yes, all throughout your day... remember to drink enough water. :) Lots of water. heh Or you'll go high from dehydration. FUN.
I don't really think we realize just what we're doing to persons with Diabetes. We worry so much about about an obesity epidemic, but instead we're creating a Depression epidemic in more ways than one. We are creating an epidemic of people who want to die, in silence, from shame, rather than talk about their Diabetes, or openly care for it. An epidemic of bullied children, and young Diabetic girls with eating disorders. If we have enough courage to not judge someone who just got infected with the HIV virus, whether it was their fault or not, why would we not have enough courage to not judge someone who just got diagnosed with Diabetes? Diabetes kills more people than Aids and Breast Cancer COMBINED.
Diabetic patients need well rounded, overall care, and mental health services to help cope with this chronic, life long condition. Diabetics need support; not judgement.
If you are depressed today, friend... Understand that Winter doesn't last forever. Just like your trees, plants, shrubs, and lawn, may require some tender, Winter loving care... So do you. Be KIND to yourself. It is OKAY to feel the way you do. I feel it, too.
It seems like the end of the world out there, in your heart and mind, but it is not. I GET IT. You want the roller coaster to stop... If you are struggling today, with Depression, hiding behind society fabricated shame is not the answer; please, open up. Talk to your doctor, or find a new doctor. Find a Diabetes support group in your area, or online... Leave unsupportive environments, and judgmental people (even if they themselves have Diabetes.) Do NOT go down into that Wintery scene... You can do this, and I'm no different than you... Spring is just around the corner. Let yourself bloom.
Thanks to everyone who has been tweeting to ask how my first few weeks of pumping have been going. Very much appreciated. Sadly I've not really got time to write a post in any kind of detail today (inevitably work has gone crazy because I've got some time off booked before Christmas).
I always knew that the first few weeks would be a bit of a rollercoaster, and so they are proving. I've had a bit of everything really, mostly unexpected highs and one or two lows (a mix of user error, dodgy sites, bubbly tubing and general set-up shenanigans as far as I can tell). I've had ketones* for the first time in I can't remember how many years. I've had absolutely amazing support from my DSN who has been on the phone and emailing regularly to see how things are going. I've also had great support and encouragement from you lovely people in the DOC. It feels a bit odd to have 'friends' that you are never likely to meet face to face, but who nevertheless go out of their way to send positive vibes from hundreds or even thousands of miles away.
My first week on insulin went really quite well. I made a few tentative basal tweaks and generally got used to things. I'd expected to need less insulin on a pump, as this often seems to be the case and for the first week my Total Daily Dose was perhaps 60% of what I'd expect on MDI.
This week has been a little different though. A little unexpected. I've managed to fit in a basal test, but have been fighting high BGs much of the time. It seems that the basal doses and insulin:carb ratios that worked fairly well in week one have failed dramatically. Interestingly I have been exchanging tweets with the mum of a new pumper whose son went through exactly the same thing after about 10 days. My total basal dose is now back to almost exactly what it was on Lantus.
Another unexpected consequence was my first delivery of sets and reservoirs from Medtronic. I'd been advised to get around 3 month's worth and good grief! That's a lot of stuff! I'm going to have to find somewhere different (and significantly more spacious) to keep all my spare diabetic gubbins.
More updates to follow. As fellow newcomer to #teampump Dave would say, keep the faith.
* Ketones are poisons that can build up in the bloodstream when blood glucose levels run high/insulin levels are too low for any length of time. Risk of Diabetic Ketoacidosis is one of the things you need to watch for when pumping since you have no long-acting insulin sloshing around to get you out of a fix.
I love, love, love the benefits the online social community can bring. Finding, and meeting others who are just going through similar enough experiences, is probably one of the most healing things a diabetic person can experience. There's so much REDEMPTION in just being with other diabetics, in THEIR shadow of hope and light... Let's face it, outsiders don't usually understand us... and doctors often don't understand us, either. Heck, sometimes we're lucky to even get an educated enough doctor... much less an understanding doctor. It's not uncommon for persons without diabetes to say some really insensitive, uneducated things... So it's also no surprise that one of the guides developed to help diabetics traverse the waters of outsider social stupidity is Accu-Check's guide for Diabetes Etiquette for People Without Diabetes.
That being said... the topic of this blog post might, or might not surprise you. I'm not here, this time, to talk about insensitive, non-diabetic folks... but about insensitivity within the DIABETIC community. As much as I love our community, and we bring light and awareness to many, many things, we really need some major help in these areas... Yes, it's true. We need to work on our sensitivity, and love for one another... because when we're pricks, we...
Cause people a lot of personal feelings about their diagnosis
Confuse people about the direction of their diabetes management
Make people feel marooned, and misunderstood... maybe even threatened
Ruin discussions that could be productive, and help ALL diabetics learn and grow
Ruin forums, and isolate folks from joining and participating
Do unto other diabetics... what we don't want non-diabetics doing to us!
Lately I've experienced firsthand, and witnessed a lot of this in our community... and quite frankly, it's time we started demanding of ourselves what we expect and demand of others without diabetes. So... I've decided to make a list of etiquette points... (dun DUN dun...)
for people WITH Diabetes.
Having diabetes is challenging, and embarrassing enough, at times... especially with the world's misconceptions and misconstrued ideas about who we are. On top of that, many diabetics do NOT get any education on the part of their medical team, false reassurances that they do not need to worry 'it's nothing,' and even LESS help with the paralyzing psychological aspects of denial, and coping with sudden and drastic life changes. Do NOT assume someone who is not making the right choices is just some slob. You are NOT in their shoes, and are only looking from the outside in.
Moms did NOT overfeed sugar to their babies; Type 2 Diabetics are not whiny, out of control slobs. It is NOT okay to point your finger at the world for recriminating you, and then turn around and point it at your fellow diabetic! Just because your neighbor Jim Bob, is a bitter, mean Type 1, does not make everyone else with Type 1 this way... and just because your aunt Betsy with Type 2 seems to pay no mind at all to her Diabetes does NOT mean everyone else doesn't! I can guarantee you that as far as there are stars in the skies, there are people of ALL characters and walks of life affected by EVERY disease. Not all Type 2s are heavy, or uncontrolled; not all Type 1s are thin, and controlled... Not all Type 2s are ignorant about their disease, and not all Type 1s are well versed on all their options. Just the other day I saw a Type 1 woman sharing with the world, on a forum, that Type 2s turn into Type 1s when they need to inject insulin... Ummm, yeah. I don't think so, lady.
People, we must educate ALL of us, and make assumptions about NONE of us.
I hope I don't need to explain too much just how wrong this is. I mean, after all... when you try to raise awareness about Diabetes, would you be okay with a non-diabetic person saying this to you? Your Diabetes type is NOT my problem? I don't need to learn anything about it? It doesn't affect ME, so it's not important?
Yeah... I didn't think so. Don't be a gratuitous jerk. You can't bring POSITIVE, momentum building, LIFE CHANGING... awareness... to your TYPE of Diabetes...by being the big jerk putting other people's type down. Stop the crap. It's a LOT more harmful for YOU and your loved ones, than you can fathom.
Listen to me... You have the right to control your destiny. You have the right to control your carbohydrate consumption, insulin to carb ratio, exercise regimen, or when to go on oral medications...
But you DO NOT... Listen carefully... You do NOT have the right to control, manage, and boss around another diabetic's personal management care, or their loved one's management care. You have the right to offer advised WHEN IT'S ASKED, but THAT'S where it ends. You have NO RIGHT to throw your weight around and bully other people over this. What works for you may not work for someone else, and it may ENDANGER their life. You have NO right or business doing this. So shut the F up and be supportive, even if you personally do NOT agree! There are many, many roads to get to Rome, and people do NOT need to pay a tollbooth of exclusivity to YOU. Got it?
While diabetes is NOT all the same, there are advantages, disadvantages, and dangers... to every form of diabetes, and every form of diabetes management. Please don't put down other people because you have rosy colored daydreams in your mind of what it's like on the other side of the fence. You can say any other diabetes is better, with an infinite supply of arguments: children getting diabetes is better, because they get used to it; adults getting diabetes is better because they can more maturely understand the implications, people without medications have it easier because they do not have awful side effects, people on insulin have it easier because they can eat anything and just bolus for it, etc, etc, etc. When you make every one of these statements, you DENY people the reality of their diabetes; their struggles, mental battles, and hardships.
People without medications often must exercise extreme willpower to control carbohydrate levels to such a degree, that they won't spike. MOST people can't even follow a crappy Jenny Craig diet. What's worse, people without medications don't have the most choices in bringing numbers down. I mean, if you're high at 3 am, would you want to go running at that hour?
People WITH medications are often subjected to horrible side effects: extreme gastric upset, diarrhea, potential lactic acidosis, kidney, liver, or heart damage, cancer, etc, etc. They can bring on some of the complications we work so hard to avoid, to begin with... Along with nausea, and hypoglycemia, as well, sometimes. Not only that, but some of these medications are ALSO injectables, so if you fear injections, it's really not much better than insulin.
People on insulin shouldn't also eat whatever they want; they must manage their food consumption just like anyone without diabetes. It's not a license to eat, and eat... And it's not like it's a walk in the park, either... There's hypoglycemia, and potential weight gain for many who are prone to weight gain, regardless of their type.
Children with Diabetes do NOT have it easier just because they got Diabetes as children... Diabetes puts a HUGE stress burden on the family, parents frequently fight or get divorced, or one parent gets incredibly burdened with the total care for their child. Not to mention, the bullying by other kids, etc., maturing at too young of an age, and NOT getting to enjoy childhood as normal children. Often a parent may push a child incredibly hard, for the sake of advocacy.
Adults with Diabetes have all manner of lifetime habits INGRAINED in them. I've gotten yelled at by roommates for not using the proper "tupperware" for putting food away, or by my husband by not putting things away exactly how he likes them... Are you kidding me? This is one of the hardest things to have to change AS AN ADULT. Life long habits that have nurtured us, and comforted us for DECADES. Also, it's pretty scary to have to face one's mortality, and it takes time to break away from denial... A young person may still have a supportive family; an adult may have limited friends, and persons they confide in.
Also... do you remember that one heartburn commercial? You know, the "Do you want heartburn now, or later?" How about I don't want ANY of it! It's all bad! Do not tell someone their Diabetes is NOT dangerous! Really? Do you want the danger now, or do you want it later? Is one really better than the other? Hmmm... Would you rather die as a child, leaving your family heartbroken, or would you rather die as an adult... with many traumatic complications... leaving your kids orphans? Let me think on that, for a while. NO... DIABETES IS ALL BAD. THERE IS NO MAGICAL DIABETES WHERE THE CARE BEARS COME AND GIVE YOU HUGS. GET OVER IT.
No juicing; no starving yourself on 600 calories a day; no raw dieting, no veganism, no NO carbing, no magical herb, plant, bird poop, or seed, from the Jababwey People, or whatever the hell, will EVER cure ANYONE'S Diabetes.
Do NOT go around quoting studies to people to make them feel bad... that they ought to be able to cure themselves, or at least try... This means you DO NOT have the right to go telling people they need go get islet cell transplantation, or gastric bypass procedures of any kind. These procedures, for as many studies that claim they are miracle working things, are also DANGEROUS, have LIMITED results, and are NOT a guaranteed cure for everyone. They are Russian Roulettes. They can, potentially, leave a person with even more problems than before... and are quite frankly, PERSONAL DECISIONS, AND NONE OF YOUR BUSINESS. A cure should do NO HARM. You have no RIGHT telling people these things will cure their Diabetes. I don't care HOW MANY careless, unscrupulous researches, or doctors, say that it is.
Furthermore, TIGHT CONTROL is NOT a cure! Reversing neuropathy, high numbers, dizziness, blurry vision, yeast infections... are all NOT signs of a cure. They are signs of TIGHT CONTROL. Go ahead and eat a big piece of pie, and test... I TRIPLE DOG DARE YOU.
When you behave like this, what kind of example are you setting for non-diabetics? How is the world supposed to treat us? What kind of example are you setting for your children?
Listen, don't get me wrong... There are a lot of people I dislike; I don't like their methods of doing things, or their ways of carrying on, and I may yell at them, sometimes... But I will NOT... WILL NOT... encourage violence toward other diabetics, in any way, shape or form, even as a joke. I will support EVERY DIABETIC, whether I like them or not... because this is NOT about the people I like. This is about a HORRIBLE disease NO ONE deserves to have. NO ONE. You will get upset at many people; you may even call them a name, or two, on your wall... But the minute you start encouraging other people to fantasize about 'bitch slapping' anyone... that's the minute you have become what's WRONG with the Diabetes community. There is NO SCENARIO in which this is even remotely OKAY.
Similarly, do NOT put down how other people raise awareness, and seek to boycott them. Everyone has the right to dream a diabetes cure how they see fit, and everyone has the right to be a leader. There is NO king and queen of the diabetes advocacy. Make helpful suggestions, and raise important points... even challenge things; but DO NOT piss on people's parades and tear down their house of cards. That is NOT okay. Diabetes Awareness Month is a SPECIAL time. Respect it.
Diabetes is complicated; there are no simplistic answers, and simplistic solutions. We all must do what it takes to care for ourselves, and be healthy... and that can't be done with guilt, or with shame; with uneducated, misinformed doctors, or with the media spitting out every bit of nonsense or poorly done research study there is. We are ALL diabetic, in risks, in symptoms, in need for effective care; we are ALL our brother's keeper.
Diabetes awareness is not just for OTHERS to be aware of YOUR Diabetes... it's also for YOU to be aware of other diabetics as well. Learn to stop myths in their tracks, and do not add to their buildup. For example, if someone says to you "Oh, is Type 1 Diabetes the one you can cure with diet and exercise?," don't reply with "No, you're confusing it with Type 2 Diabetes..." The right answer is "No, there are NO types of Diabetes right now that can be cured with diet and exercise; only some may be controlled that way." Similarly, if someone asks you if Type 1 Diabetes is the "bad kind of Diabetes," don't say "Yes, it's the worst." 1.) It makes people feel bad, okay? No one wants to be pitied, or to have people being taught to pity others with the condition. 2.) Like I said before, really? There's no magical Pooh bear in the Hundred Acre Wood Diabetes... 3.) Just let them know it's ALL very bad, just in different ways. There's no a single type of Diabetes I'd rather have...
Be inclusive, and make it easy for folks to JOIN in on your conversation, whether it's on twitter, or some event you're planning... Don't make things obscure, or cliquish. We can learn so MUCH from each other, if we just keep an open mind, and an open door. There are MANY issues that cross the borders of types... issues with making more glucose stable meals, issues with carb counting properly, issues with weight (sometimes), or developing insulin resistance (even in Type 1s)... Sometimes, we can learn from the courage, and every day management of a long time survivor of Type 1, the hope and unwavering faith of a Type 3, or from the life changing determination of a Type 2. Sometimes, all we need is to HUG each other, when the whole world just wants to turn its back.
At the end of the day, we are human beings who happened to get a disease they didn't want, and which has caused all kinds of havoc in our lives. Let's take a moment for turning around and just saying
THANK YOU!
Thank you for being there for me... Thank YOU for being 1 of 335 million who UNDERSTANDS Diabetes... and HAS MY BACK. Let's help and educate the other 334,999,999. Let's help save lives.
Now GO, AND DO THE BIG BLUE TEST! HELP SAVE OTHER DIABETICS, WORLDWIDE. WE ARE EACH OTHER'S ANGELS. DO NOT FORGET.
Don't just watch it, and preach it... but do it, and record your information HERE. Your advocacy will help other diabetics have life saving medications, and education.
Every November is sort of bittersweet, for me. In one way, I am very excited -- the unity, love and compassion of many, just pours over in our communities. It is a huge opportunity to spread a bright blue beacon of awareness across the world. It's almost like Christmas time... Diabetes style.
In another way, Diabetes Awareness Month is very frustrating to me... because it is, in many ways, National Recrimination Month. I can conspiracy-theory-spin this all the way to the bank, but I won't... Instead, I'll just share a few simple truths with you:
Type 2 Diabetes Awareness, largely focuses on telling people that their Diabetes is preventable, and that 80-90% of the cases could have been avoided. Now, I'm curious... did anyone send you a survey, or knock on your door asking you how you got your diabetes? Did they ask you what medications you take, what other illnesses you have, or come over and take blood samples from you? No? Oh. Well... That's because when people are throwing that statistic around, they are usually mentioning either of these two studies... (Most people, or organizations, WON'T EVEN REFERENCE THEM. I had to dig DEEP just to find these two.)
Diet, Lifestyle, and the Risk of Type 2 Diabetes Mellitus in Women: Frank B. Hu, M.D., JoAnn E. Manson, M.D., Meir J. Stampfer, M.D., Graham Colditz, M.D., Simin Liu, M.D., Caren G. Solomon, M.D., and Walter C. Willett, M.D. N Engl J Med 2001; 345:790-797. September 13, 2001. http://www.nejm.org/doi/full/10.1056/NEJMoa010492#t=articleDiscussion
Lifestyle Factors and Risk for New-Onset Diabetes: A Population-Based Cohort Study. Jared P. Reis, PhD; Catherine M. Loria, PhD; Paul D. Sorlie, PhD; Yikyung Park, PhD; Albert Hollenbeck, PhD; and Arthur Schatzkin, MD, PhD†. http://www.annals.org/content/155/5/292.abstract
Now... what's wrong with using this to badger people with diabetes? Well, for starters, these types of studies are OBSERVATIONAL studies. Meaning a.) they rely largely on demographic data from participants, and not on laboratory studied, measured, clinical data, b.) they make assumptions on what a healthy diet means, b.) they rely on anecdotal testimony on what participants may claim are their risk markers for a family history, c.) they do not account for racial, or ethnic risk markers, d.) they use limited populations of people that may or may not represent the overall population, in certain circumstances (like ALL nurses, which their occupation already may put STRESS as a HUGE factor in diagnosis.), e.) they don't tell how many of the total participants in the studies were actually overweight or obese, regardless of diabetes development, f.) they control for common things, like metabolic syndrome, but not for other critical factors, such as different illnesses, medications, pollution, toxins, etc., g.) They assume things like high triglycerides, high cholesterol, and high blood pressure, are ALL preventable things (completely ignoring their genetic components), and what's worse... h.) These studies assume that because the rest of the people were able to, somehow, avoid getting Type 2 Diabetes... that those people who did get it, should have been able to avoid it, too! I think that it's very evident that we are all UNIQUE, as our fingerprints, and that unless we were able to magically step back in time, and redirect those people who got Type 2 diabetes, we will never truly be able to tell if they could have prevented their illness just by comparing them to other strangers! That's like saying I could have avoided getting late to work, like 'Jenny did,' without taking into account a.) my car breaking down, b.) people having an accident and blocking the main roadways, c.) tornado warnings being issued, etc., etc. These studies tell you NOTHING about these people other than many of them have a poor diet, like MOST Americans do. Yet MOST Americans will NOT develop Diabetes. These studies will NOT tell you anything about the chemistry inside these people's bodies, or even WHY they might be overeating, or addicted to nicotine, or alcohol. As discussed in my About Diabetes post, Type 2 Diabetes is a HELL of a lot more complicated than these simplistic studies.
I am SICK and TIRED of hearing this old line used to badger poor people who got a disease they DIDN'T WANT. NO ONE wants Diabetes. NO ONE. While I can't say that there aren't folks out there, in the world, who love food... or love to pig out, or drink, or smoke, for the sake of doing these things... I can tell you that that is HARDLY an excuse to say everyone else who developed a disease was EXACTLY LIKE THAT. What's worse are the George Burns of the world who smoked till they were 100, and had NO PROBLEMS ever with lung cancer, or the Manuel Uribe's of the world, who weigh in around 1,000 lbs, and have no high blood pressure, no high cholesterol, no triglycerides, and no diabetes. Healthy eating and exercising can benefit EVERYONE, and they are ways to help us EXTEND our chances for good, overall health, and have more energy for life... but they are not a passport to a disease free life. I recall a next door neighbor, from my childhood... Jogged every day, very fit, and thin... Died at 42, from a sudden heart attack. No family history. His dad, by contrast, smoked like a chimney ALL HIS LIFE and didn't die until well into his old age, when he actually presented complications. Diet and exercise will NOT 100% prevent anyone from getting Type 2 Diabetes, nor should it be presented that way. Am I saying we should push the lottery of life? NO. No way in hell. But what I AM saying is that telling people they could have avoided giving themselves a disease is a.) Unhelpful, and b.) Not the complete picture of things, and probably, very untruthful.
Awareness focuses on telling people THEY need to take action in getting tested, and finding out that they have this chronic condition. Now, don't get me wrong... I agree with this. I agree that we need to take action, and we need to get a hold of our health... but I agree with it, mostly because doctors are NOT doing their part. And this is where awareness fails. Awareness should not rely on going around, scaring people, telling them they need to get tested. (Many people won't... they don't want to know... hey, it's scary... I don't blame them!) Awareness should rely on empowering doctors, urging them to continuously educate themselves about Diabetes, and giving them the tools to help, and empower persons with Diabetes, in a welcoming, and nonjudgmental environment. If this is such a dangerous disease, why aren't doctors being sent to more intensive training to learn, and deal with this condition? Why is my PCP so ignorant that she had to go get herself on the ADA website to find out information to "give me," on what to do?! I can do that myself, thank you very much! (And it sure as hell WON'T be from the ADA site!) If this is such a dangerous disease, why is a fasting blood glucose, or even an OGTT for those at high risk, NOT part of an annual physical? Why do people need to know that they need that, in order to demand it? Why can't a doctor know?
What's worse is HOW a diabetes diagnosis just keeps getting delayed, and delayed because of old, and tacky, ADA guidelines. Patients are not given proper follow up testing, told they have "pre-diabetes," not told they need to make any changes, not referred to any certified diabetes educators, or registered dietitians, and not given tools to monitor their condition. In short, they are told they have NOTHING to worry about. To just lose some weight, and they will be fine. Most of these people are ALREADY diabetic, and don't know it. By the time the average person gets diagnosed with "Pre-Diabetes," they've already reached a 40% loss in beta cell function. (http://diabetes.diabetesjournals.org/content/52/1/102.full) By the time they are diagnosed with Type 2, an 80% loss in beta cell function. (http://www.dlife.com/diabetes/type-2/diabetes-causes/garnero_0608)
Awareness focuses mainly on telling people with Type 2 Diabetes that they need to take care of themselves, and they need to test. I couldn't agree more! *clap* *clap* This is the truest thing that anyone can say about Diabetes (of any type), really. It might seem hard to imagine that I, or anyone else, would have a problem with this... what could possibly be wrong? Well, the problem is similar to telling your spouse they need to go do the grocery shopping (for the week), and giving them only $20 to do it with. Huh? I'll spell it out for you... :) Insurance companies will NOT HELP people with Type 2 Diabetes; they are of the view, and the assumption that because most of us will not immediately die from high blood sugar, that we do not need to test as often. This means that if you have "Pre-Diabetes," you are likely to be given 0-1 test strips (a day!) to test with; if you have Type 2 (anywhere from 2-4), depending on what medications you use... with 1 generally used for those not on medications, and 4 being used for those on insulin. If you are a newly diagnosed person with diabetes who does NOT know how their diet affects them, 1 strip isn't going to be of much help. Much less 0. You have to know at least two parts of a mathematical equation, to be able to come up with a conclusion of some sort (ie, because my fasting blood glucose before a meal was X, and my postprandial was Y, then I know the amount of carbohydrates I had raised me Z glucose points.) But if you only have X, or Y, by themselves, that doesn't tell you much of anything. And if you have nothing, you're pretty much going on exactly that... nothing. Almost every informational pamphlet out there, on Type 2 Diabetes, urges people to test before and after every meal, at rising, before going to bed, and before or during exercise, and at times of illness. Now, do the math with me... how many strips does that add to? ... Yeah, a heck of a lot more than 1. Insurance companies claim that the costs of covering these strips is too much, yet... they do not factor in the costs of complications from poorly controlled blood glucose, nor do they seem to want to listen to how much money they could actually save if they actually taught people how to monitor their blood glucose and make meal decisions based on their numbers.
Awareness focuses on telling people they need to go talk to a Certified Diabetes Educator, Registered Dietitian, or Endocrinologist. Yet, for a Type 2 Diabetic, insurance will SELDOM cover these specialists as they deem them unnecessary, and unjustifiable. Diabetics are left to the care of very many ignorant PCPs, APs, and even RNs, or LNs, with their OWN ideas of what diabetes is. What's worse, is that NONE of these people seem to understand that Type 2 Diabetes is a progressive illness in which our bodies will not be able to metabolize carbohydrates properly... We are ALL different in our progression (and the damage in our systems), and telling a person to eat X amount of carbohydrates, at meal times, without instead... letting them learn what number is appropriate for them based on their glucose responses, their overall health feeling, and appropriate medication levels, is setting up MANY people for failure. This is where the conspiracy theorist in many wakes up, because keeping people on so many carbohydrates with the excuse of "your brain will starve," keeps a lot of diabetics on MANY medications, some very dangerous, bringing about many unnecessary complications at an early period of progression. What's worse is that doctors not up to par with the latest in medical research will keep Type 2 Diabetics from access to insulin, sometimes until terrible, and unnecessary damage has occurred, from the complications of high blood glucose. Studies have shown that early insulin intervention is NECESSARY in Type 2 Diabetics. (http://clinical.diabetesjournals.org/content/27/2/60.full)
Awareness focuses on telling Diabetics they need to keep their blood glucose numbers steady. Yet another gem of wisdom here. I couldn't agree more, again, frankly... "But why is this so wrong, Liz? You must be off your rocker..." The problem here is that Diabetes advisory organizations do NOT agree on blood glucose target goals, and often use poorly done studies (like the ACCORD study) to justify that diabetics (of all types, without respect to good health), stick to higher blood glucose numbers that can lead to complications later down the road. Frankly, the American Diabetes Association is the ONLY organization recommending such high blood glucose goals as being at 180 or lower, 2 hours after a meal! Everyone else recommends around 140 mg/dL. Why are we relying on these people, and not on the American Association of Clinical Endocrinologists, for example? I can't tell you the answer to that one... I can surmise they channel most of the research funding money, and think many of us can't do it. We can't and won't take care of ourselves, to better levels... It's too hard. While some, may, indeed have health challenges keeping them from tighter goals, I do think those are personal decisions that need to be made with one's medical team, and not as general blanket goals espoused by guideline organizations. Again, the conspiracy theorist in me, would tell you that because the ADA has a LOT of conflicts of interest with big pharma (and this was documented through a recent Mount Sinai research study), then they get some type of financial, monetary kick back from many of us being on pills. (http://www.ama-assn.org/amednews/2011/10/24/prsc1025.htm)
By far... what I dislike the most about Type 2 Diabetes, in regard to Diabetes Awareness Month... is that they NEVER talk about finding a cure. This hurts me deeply... because NO, diet and exercise won't make this thing go away, and for many of us... like my father... they are not even guarantees of having good control. My father lost his battle to Type 2 Diabetes on 05/05/2003. During the last few years of his life, he endured kidney failure (we dialysed him at home), blindness, neuropathy (both peripheral and autonomic), coronary heart disease, dementia, stroke, and gangrene. He passed away at the operating table, from respiratory failure, as he was awaiting surgery for a leg amputation. His diabetes simply took a very brittle turn for the worst... I've never known someone that took better care of themselves.... He was President of the Puerto Rican Olympic Cycling Federation and Skating Federations, as well as President of the Puerto Rican BMX Associations. A coach, and a huge supporter of active youth, and athletics. He got me my first BMX bike when I was just 5 years old.
My father, near diagnosis.
My father, 10+ years after diagnosis
My father in his last years.
EVERYONE deserves a cure. Everyone deserves a dad, or a loved one, to come home to... Spend Christmases with... and walk them down the isle. Everyone. You owe it to me, ADA. You owe it to EVERY person with Diabetes, of EVERY type.
It's time you get off your sofa, stop pigging out on chips and soda bought with big pharma money.. AND FIND A CURE.
