A Diabetic Manifesto...

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.) 

Your Number One Diabetic Treatment Goal

Dear Friend,

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. 

When Diabetics Become Bullies

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. 

Oh... and by the way... I forgive you. 

The Greatest Lesson You Will Ever Learn

I don't recall exactly how I got there...

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.  

1. Eat only when you are physically hungry.
2. Eat ANYTHING you want.  Anything at all.
3. Eat only until you are satisfied, not full. 
4. 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.