Dear Beautiful Person (who happens to have diabetes),

Today, you are here. Is there a purpose to your being here? A universal, master purpose? Many claim to have the answer to this, but the honest response is that no one knows. The question is, in fact, irrelevant. You are here. That is a fact. Everything else is just speculation.

It matters not if it's an illusion, a grand plan, a godly design, or a happenchance. You are here.

And while you are here, think upon the magnitude of your existence: The last science knew, the universe was 13.8 billion years old. During much of that time, Earth was a big, hot mess. Life only began to evolve 3.5 billion years ago. Modern man, alone, has only existed for about 200,000 years...  and only in the last 30 years or so, have we seen vast improvements in industry, technology, education, science... and medicine.

Medicine.

If you would have been diagnosed with diabetes (of almost any type) back in the 1800s, it was most certainly a death sentence -- if not, a very challenging life.

Insulin wasn't discovered as a treatment for diabetes until the 1920s, thanks to Banting and Best, when many children were literally dying of malnutrition and emaciation. Banting had the heart to insist on not patenting their new-found medicine, so that it could reach as many as needed it.

Metformin was invented in the 1920s as well, and has been used in other countries since the 40s, and 50s. It was not, however, approved in the United States for use with type 2 diabetes until 1994! Yes, that is not a typo. 1994.

Back in the pre-insulin days, starvation was all people knew to do to control diabetes. To eat basically no carbohydrates, or really anything much -- as proteins and fats can also raise glucose (though, admittedly, to a lesser degree). Many simply died because it was so stressful -- or they just couldn't resist pinching food, while no one was watching.

It wasn't until the 1980s when a person with diabetes was able to monitor their levels, independently, and the first glucose monitors appeared. If they had insulin -- that was a good tool -- but if they didn't, all they knew to do was avoid eating sweets. Diabetes has always been with us, at least in the archaeological records, since Egyptian times, and we've known it's a disease about high glucose, but aside from that, there wasn't much monitoring of glucose levels until well into the 80s. Ask anyone who was diagnosed many years ago, and they will tell you stories of urine testing (sometimes, once a month, at a doctor's office), and sharpening and boiling their own needles, for sterility.

In fact... we really didn't know that diabetes was not a disease caused by eating excess sugar and sweets, until at least the early 90s. The other day, I saw a very old VHS tape for an old Vitamix blender I have acquired, and in it, they recommended diabetics substituting honey, in place of sugar. I guess in their minds, anything that was natural sugar, was not really sugar.

And here we are now... 2013. With a variety of different types of insulin, mimicking both basal and bolus outputs from our pancreas, insulin pumps and CGMs to allow us to eat with more freedom and catch hypoglycemic events, the knowledge of counting carbohydrates and the freedom to eat cake, diabetes alert dogs, and glucose meters small, sleek, or indistinguishable from an iPod, small, and painless needles... and on the thresholds of smart insulin, biohub and artificial pancreas options, and noninvasive glucose testing.

. . .

Yes. Diabetes is still hard. But we are blessed to live in 2013, and not 1913. We can see ourselves as the victims of fate, or as the blessed recipients of a grand universal lottery. Think about the kind of life you have the chance to pursue, right now... that you would have never had a chance to pursue back then. Let it sink in -- let it's blessings humble you. 

Yes... diabetes can be embarrassing. But all disease is humbling. 

Even if you never had diabetes, life is much of an embarrassing process, as well... At birth, and near death... someone has to wipe our behinds. We get old, and lose our good looks... we may get cancer, and lose our breasts, we may get alopecia, and lose our hair... We may be like Farrah Fawcett, and get colon cancer -- colon cancer. 

Illness is humbling -- for we have to accept that we are frail, that we get sick, that we get old, and yes, sometimes... that we haven't always done the best to take care of ourselves. But, can you think of anyone who has been perfect -- all of their lives? Always perfect? I know one or two who claim they were -- and you know what -- I honestly don't like them very much. For one, they are liars. They may have read the manual on living, but they haven't actually lived very much. No one learns to ride a bike from reading a book -- and thus it is with living. Some of us just have to fall a few more times, than others... and it is our beautiful, gnarly scars, which make us who we are.

I never thought of Farrah Fawcett as much of a hero -- until her war with colon cancer. And I never thought much at all, about Ryan O'Neal, until his passionate devotion to the woman he sought to wed on her deathbed. 

Don't be angry at your loved ones, beautiful person (who happens to have diabetes). It is not a matter of blame. It is not a matter of fault. Don't leave this world, and lose hope... for these massive amount of events I have listed had to have gone through... and for you to be here, in this point in time. Your loved one, well... your loved one simply LOVES you. They are in deep fear because they do not want to be without you -- at least -- not sooner than life will will. Can we blame them? 

I was angry once... at my father for (in my own warped perception) not trying harder, at life and circumstance, and God, and you name it. I was once that angry loved one... living in FEAR. Sheer fear. But, you see... for whatever reason, you are here -- in this very moment in time, and a time when you happened to meet your loved one. This is a very precious moment in time... In fact, to quote Lawrence Krauss -- a renowned Theoretical Physicist: 

�Every atom in your body came from a star that exploded. And, the atoms in your left hand probably came from a different star than your right hand. It really is the most poetic thing I know about physics: You are all stardust. You couldn�t be here if stars hadn�t exploded, because the elements - the carbon, nitrogen, oxygen, iron, all the things that matter for evolution and for life - weren�t created at the beginning of time. They were created in the nuclear furnaces of stars, and the only way for them to get into your body is if those stars were kind enough to explode . . . The stars died so that you could be here today.�

Is diabetes embarrassing? Well, sometimes... But I am in fact honored to be so privileged to be alive, today... right now... Experiencing this universe, the love of friends, and family... The patter of rain on my window pains, the loving purr of my cat, and the imperfect love and friendship of that idiot that still lives here which I call my husband.

Yes, I am honored... to be living here, and living with diabetes.

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

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

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

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

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

We have to recognize that we are tired... 

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

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

We have to recognize that this is real... 

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

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

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

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

We have to recognize that diabetes is scary... 

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

So we fumble. 

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

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

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

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

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

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

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

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

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

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This is the second of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Much of my first day at Stanford MedicineX left me feeling like I didn't belong there. I wasn't an innovator, or a CEO of anything (except, perhaps, CEO of my type 2 diabetes), and I wasn't quite sure what my voice was going to be at this conference. I wasn't even close friends with any of the other diabetes advocates who were attending. I felt, well, maybe I was a bit bold in having applied for this conference. But by the time our orientation dinner came around, I became a bit more confident in myself.

Carb centered food everywhere.
How apropos. 

Dinner was had at the quirky, randomly decorated Buca di Bepo restaurant (where you have to cut through the kitchen to get to the dining room), and there I found some comfort. Many health advocates of all walks of life, with all sorts of conditions, all in my same spot. Some with a few more dollars than I, some with fancy positions; some with just their blog. All just like me. People, passionately believing in raising patient awareness, having a friendly dinner and conversations of where they'd been on their various health journeys.

Things were going to be alright. I could do this, I thought. The twitter voices of the many I had met, now echoed into my reality. The voices of those surviving and thriving with breast cancer, rare diseases, heart conditions, liver transplants, rheumatoid arthritis, asthma, Crohn's disease, and of course... diabetes, among many others. Stanford's Med X was going to be patient centered, and we were going to take front row seats into a whirlwind of personal stories, and imaginative ways in which silicon valley wants to make an impact.

Day 1: The Self Tracking Symposium

"The best way to anticipate the future is to fully understand the present ...  the best way to design useful tools is to notice and respect what people are already juggling in their lives." -- Susannah Fox, Pew Internet & American Life Project, on the future of self tracking.

Pretty sure this app's not
going to help anyone, though.

I'm no stranger to self tracking. There's self tracking everywhere. Track your weight, track your heart rate during exercise, track your laps, track your steps, track your BMI, track your waist circumference, track your period, track your basal temp, track your anything, and everything. There are even many apps and things out there to help patients track these things, as well as their glucose levels, or their insulin and medication usage. MedX discussed several of those apps during various startup and innovation segments. Those can be useful, in their own level... and some will be so revolutionary, that they will no doubt, forever change the ease of use of many of our medical services, and ideally, save us a lot of money as a whole (patient, industry, nation, etc.)

But what I wasn't aware of... was that the science community was on to us. On to us patients who actually self track for something more meaningful than this. Some of us patients self track because we are our OWN science experiments... because clinicians have stopped paying attention to us, or acknowledging our conditions. Because we need meaningful ways to learn, and track patterns, and self adjust for the daily grind of managing cumbersome chronic health conditions. Because those things are never found in textbooks, and are seldom ever discussed by medical professionals. Yes, some of us self track because we want to live another day, month, year, or decade... and because we want to be heard by our medical team -- and we need a voice, and we need ammunition. We need co-operation. We need acknowledgement. Sometimes, we may even need a diagnosis.


So, meet Allan Bailey. Allan Bailey is one of the self trackers. One of us. There were other self trackers, with very impressive stories to be told... but Allan Bailey has been living with type 2 diabetes for the last 27 years (onset at age 18), so I find myself a bit biased to bring him up. Allan is one who seriously took matters into his own hands... and paid for it big time. Yes, and he paid for it to the tune of around $2K. You see, Allan got pretty tired of being given the runaround as to why his blood sugars were always so all over the place... he was told his control was 'okay' and kept being treated by conventional medical standards, but Allan was not satisfied. Allan was already living with heart complications, and four stents in one vein. So... Allan bought himself a CGMs (a continuous glucose monitoring system), to really help him learn why his blood sugars were all over the place. I'm really not sure how he managed to arm wrestle his clinician into prescribing him this device, but Allan had to pay for it out of pocket, in full. Of course, it didn't take long for him to see who the real culprits in raising his blood glucose were: breads, grains, etc. Carbs. Allan never imagined that his CGM would turn into this instantaneous feedback loop for what he ate, nor that it would turn into a behavior modification device that would lead him to euglycemia, and weight loss. Doctors never care for prescribing CGMs to persons with type 2 diabetes -- usually only to those living with type 1 diabetes, particularly because it has alarm systems to help deal with potentially dangerous low blood sugar levels, and because of how costly it is. (Nevermind that the cost of complications from uncontrolled diabetes far outweighs a $2K device, and it's supplies.) Allan now has an A1c of 5.1%, has greatly improved his health, and reduced his medications.

Now, as wonderful, encouraging, and brave as Allan's story is... it makes me angry. Very angry. Can you imagine why? Wait for it...

WHY THE HELL WOULD A MEDICAL TEAM NOT EXPLAIN TO THEIR PATIENT THAT THE BIGGEST REASON OUR GLUCOSE LEVELS RISE IS BECAUSE OF OUR CARBOHYDRATE CONSUMPTION??????????? WHY DOES SOMEONE NEED TO SPEND THOUSANDS OF DOLLARS OF THEIR OWN HARD EARNED MONEY TO FIGURE OUT THAT BREAD AND GRAINS, AND PASTA ARE LIKE POTENTIAL KRYPTONITE TO A DIABETIC? WHYYYYYYYYYYYY????????? HADN'T ANYONE EVER HEARD OF COUNTING CARBOHYDRATES, AND MEASURING PRE AND POST PRANDIAL RESPONSE? YOU CAN DO THAT, AND PLOT YOUR OWN BELL CURVE WITHOUT THE NEED OF A FANCY $2K DEVICE!

This, of course... is not Allan's fault in any way. Allan was a creative person, and did what he HAD to do... and is now very healthy for it. All the power to him.

My story could have well been Allan's. Except that I ate food, noted what I ate, tested every 30 minutes, spent a heck of a lot of money on test strips (even discounted ones) as well as relying on the kindness of strangers for them, and quantified this information on a spreadsheet. It didn't take long for me to bring a 10.5% A1c to 5.3%, and it has remained below 6% ever since my diagnosis. But, like Allan, I was given a big runaround for a while... When I was diagnosed, my clinician initially refused to accept I had diabetes of any kind, even though I had such a high A1c and had multiple fasting blood glucose tests well above 200 mg/dL. And when she did concede I had a problem, she merely said "I'll google the ADA website, and tell you what you need to do." HECK, I CAN DO THAT, MYSELF! Why was I wasting my precious time in her office, for that?!?

I'd love to have a CGMs, because who doesn't love to see instant graphs and things... and I am SURE that it helps a lot with compliance (and yes, it probably adds to guilt, too, when we fail.) But it's sad that persons with type 2 diabetes routinely get denied useful, powerful, quantitative technology... and this denial is not limited to the CGMs. Many patients are denied an adequate numbers of testing strips, or even a meter at all! But what good would these tools do a person with type 2 diabetes if what they are denied is the most important thing of all... KNOWLEDGE?

. . . 

At the previous dinner, when meeting several of the other "ePatients" attending Medicine X, I had a few, sort of incredulous questions as to the state of type 2 diabetes care... and the adequacy of that care, and education for the patient. What about the ADA, I was asked? Yes... what about it? In the words of Amy Tendrich, "Patient advocacy groups are not really patient advocacy groups."

I really hope that Allan's story was able to bring even a snippet of acknowledgement into our reality as persons with type 2 diabetes, the reality and importance of self tracking, and the need for patient inspired/centered care and technology. I know that I was FLOORED to see a different take on the usual 'just diet and exercise' testimony.

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It's been a couple of months since I've shared anything significant with my fellow readers.

It's not that I don't appreciate you; nor it's not that I had nothing worthy to share. But, as the pressure cooker that is often my mind, I try to give myself some time to digest new lessons or new experiences. Sometimes, those situations are just personally painful.

The last Diabetic Ice Cream Social was no exception. While I truly believe in this event, and what we're trying to accomplish, and while I had many, many supporters, a few things grieved me from it:

• The lack of support from other prominent advocates: Honestly, on the regular, I could care less if these folks read my blog, if they like me, or if they think I'm a worthy advocate... but I found it personally disturbing when not many would participate, or share in this particular event -- which was really not about me. It was an event about setting a precedent that we diabetics can manage our own selves, with moderation and self control, and that we don't need to be treated like children (or alcoholics/foodaholics) who can't make food choices -- regardless of what those food choices are. "Ice cream is poison," some may claim, but then why are we supporting efforts to help teach young diabetics to learn how to drink in moderation, and appropriately balance diabetes, but not other types of food choices, instead of just telling them 'DON'T DRINK'? Isn't alcohol a poison, too, and with much more potentially dangerous consequences? ... And I am sure there are many more ice cream eaters than alcohol drinkers out there. (Because you believe in moderation, that's why!) I also don't mind exercising, and doing something to show how a simple modification in my life can control my glucose numbers... but it would be equally reasonable to me (and very realistic) to help teach others there's no shame in enjoying an occasional treat in moderation (perhaps even preventing binges, and eating disordered situations caused by deprivation). I came away feeling many advocates were really more concerned with folks not 'judging' them, and 'tarnishing' their own images, for promoting 'unhealthy habits' than of really wanting to make an impact. 
• The attack from diabetic food fundamentalists: People who, will not skip a beat to tell you there's no 'diabetic diet,' yet the minute you discuss having a scoop of ice cream, you're called irresponsible, or even childish in your health advocacy... and then take the opportunity to try to impose THEIR personal dietary choices on you, or others (while denying they are doing such a thing -- they are just 'responsibly' telling you that you're wrong). I don't think we can make many inroads into respect for the diabetic patient, and his or her personal choices, as long as these fundamentalist food attitudes are around. The event itself wasn't even about ice cream, it was about food independence -- the freedom to eat what YOU want to eat, as your choice -- in moderation, versus what others want you to eat... And it was just really disheartening to see these kinds of folks mud slinging the event, or myself, in blogs, etc., as someone intent on promoting an 'ice cream eating binge' that further creates more diabetes. Yes, the same people who speak of food and sugar not causing diabetes, accusing me of causing more diabetes. I'm sorry to say, but this statement isn't just valid for some types of diabetes, and not for others. NO diabetes is caused by any particular food choice. 
• The annoyance of Facebook's notification system: Facebook has just changed their system so much, that a simple event is now used to notify the heck out of others -- even if they haven't yet RSVP'ed for an event, and it thus made us look like 'spammers.' Not so Facebook savvy people kept attacking me, personally, for spamming them with 'the event' or for 'not taking them off the list,' or for revving up their cell phone notifications. We tried hard to educate folks on how to turn off their notifications, but there were just too many not-so-bright, self entitled, persons out there... whining about why we weren't doing these things for them. How these persons have managed to survive in Facebook's world is honestly beyond me. In future Diabetic Ice Cream events, we might hunt for a different method to keep track of 'likes' or 'rsvp's' so that such a massive amount of notification overload doesn't bring us down. We do suspect a large number of folks attended, but simply hit 'decline' to the invitation, just to avoid notification spam. 

So, in essence, it kind of hurts a little bit when the social media tools that are at your disposal are backfiring on you, and when persons who are supposed to support you -- especially because their own personal dietary choices might be different or varied -- are not doing so. It divides us, and weakens our message of food independence. I mean, the only way we can be vegan, or raw vegan, or low carb, or anything else, is because we decided to become independent of the mandate that we had to live by a classic ADA style diet. And thank goodness we no longer live under the notions that we HAVE to eat by what a dietitian exactly says we have to eat, or by what the olden days used to believe -- avoid table sugar, only. 

I am, in no way, an ADA diet advocate... but I will advocate for anyone who thinks that's a diet that gives them the self control, glucose wise, that they need. I will advocate for any regimen which they feel is balanced, isn't intrinsically dangerous or based on pseudoscience, and brings them euglycemia, ease of implementation, AND quality of life -- that's our goal! 

I felt I needed to say a few things on the matter... before I blogged on anything else. The goal of the Diabetic Ice Cream Social has, and will always be... FOOD INDEPENDENCE.

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One of life's many reminders that
 I am not alone, with diabetes.

"Who are you?," I asked, as strange and odd faces peered over me, picked me up and placed me on a stretcher. "What am I doing here?"

No one answered.

The world felt really odd, and weird. My head, compressed and pained, while my vision was at odds with my mind... as if I had put on a pair of someone's prescription glasses many times more powerful than my own vision, and making everything in sight oddly concave.

"She keeps saying that!" said the voice of a red headed woman with too much eye make up, in an exasperated tone, and incredulous that I could not remember who any of them were. Funny, I thought I'd only asked once. The attention was unnerving, and frightening... and their annoyance was oddly embarrassing. I really wanted to get out of there, and go home... If only I could of remembered where home was.

On October 26th, 2007, I had a massive seizure at my desk, at work... Or so they tell me. I can't remember when it started, or what provoked it... I can't remember much of anything about it, or that day, for that matter.

All I can remember is laying in a hospital bed, in a medical gown and no underwear, under the gaze of my former Human Resource Manager, and trying hard not to look like a woman who's not wearing a bra. He was a brutish man, with a hot temper, and little human resource education. It's the way of the world in some of these up and coming companies. You get to be buddy-buddy with the head honchos, join the good ol' boys club, and then it doesn't matter if you have any qualifications for a job. His way of qualifications was a 6 month stint as temporary HR manager back in 1984. (Yes, you can laugh out loud.)

... And so it was that a company who sold out to a much bigger company, coincided with a production foreman (wise in the ways of verbally intimidating employees) being made into an HR Manager (a position which requires extreme diplomacy), and me... developing extremely debilitating, and uncontrolled type 2 diabetes, with no one knowing what it was, at the time.

It was a perfect storm, really.

They needed to cut down on employees... and I got sick. I was a good target. We all knew they were going to cut SOMEONE. They kept having all those 'behind closed doors' meetings. And no one knew what I had at the time, so I got to be made to look like a mediocre employee who just wanted to play hooky and not show up to work. A great way to cut staff (and I made quite a bit of money, in my position, so it was quite the savings for them, I am sure). They had already tried to intimidate me... by demoting me, claiming I was unorganized, and had made many mistakes. (It didn't matter that, when I asked, they had absolutely no examples to provide to back up their assertions, other than my illness related absences, which had been closely monitored by my doctor... nor that a few months earlier, they had given me perfect praise... nor that my previous review had been above excellent.) They wanted to break ME as a person, and get me to quit. They wanted to treat ME as worthlessly as another unskilled production employee.

So, I had a seizure. It was on a Friday, and I spent a really ill weekend at the hospital. Went home on a Sunday, with a very chewed up tongue, migraines and dizziness issues... And when the HR Manager demanded I be at work on Monday -- but couldn't do so, for obvious reasons -- he fired me. The company NEVER contested my claims for unemployment insurance; they never even showed up for the hearing.

I can't tell you... HOW MUCH I have blamed myself over the years. How much I have felt like a worthless person who just couldn't keep running as hard as she could, who couldn't just grin, and bear it. Still, to this day, I sometimes have many nightmares... sometimes reoccurring dreams where someone calls me, 'forgives me,' and just gives me back my job. I loved my job. I loved making a difference. I loved making people smile with my organizational skills, and my programming skills, and my language interpreting skills. I loved interviewing new hires, and giving new employee orientations, and speaking to big audiences... I loved educating, and writing, and speaking, and everything I did. I had been promoted to a better position within 4 months of hire, and given hefty salary raises for my skills. I had dreams of further certifications, promotions, and continuous education degrees. I LOVED MY JOB. I loved my life. 

For many years I felt like I lost my soul on that day. I lost my soul, and I let myself go. I let myself go, and felt like I died. Long, lost, and forgotten... someone who forever had ruined her life. I felt great shame, and hurt. Great anger.

Diabetes came into my life with a BIG bang, and like a tsunami... washed up many parts of my life with it. Great post traumatic stress took over, and made me shy away from new jobs, job situations, and new friendships. Finding a job, a permanent one, and keeping it... for the last 5 years has been HARD. I wanted to cry and wallow in self pity.

Diabetes is HARD. And it's often embarrassing. And people JUDGE you. They do. People DON'T understand. People think their lives are textbook examples for how other people's lives need to be. They judge you, and they often try to bring you down.

But you get up. You get up, and pick up the pieces of you... as many times as you need to... and you keep going.

I now work minimum wage. I don't do anything near as glamorous as I once did. I have two jobs. I work unloading trucks, and at a fast food place. I don't even have a car. I walk long and far... just to make minimum wage. But I am... OKAY. I'm OKAY, and I am even happy, sometimes. Heck, I'd say most of the time.

My bosses don't really get diabetes... but they LISTEN,  and they try to understand, and try to help me be safe at work, and make concessions. My coworkers LISTEN, and they care... My bosses let me be ME, with diabetes. They let me be ME, in spite of diabetes. Sharing with coworkers the other day, and even opening up about my traumatic past, really made realize... that it's OKAY. That I can move on. THAT I AM SAFE.

Sometimes, some of those people I used to work with at the Human Resource job, show up for lunch at the fast food place. They seem to look down upon me with a certain pity in their eyes, or with embarrassment that I am doing a fast food job, and I just smile kindly back to them. I smile because I'm happy, and they don't understand my journey... and I hope they NEVER have to.

I smile... because though I loved, and miss my job... happiness and freedom are not found in jobs, nor what people think of us. They are found in those 5 year detours in the desert... when all you have is YOURSELF.

(... And, ironically, the original founder and owner of the company passed away, not long ago, of type 2 diabetes complications. I may have lost my job, money, insurance, etc... but I guess at least I still have my life... and boy am I LIVING it.) 

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Last year, a certain man writing for his local newspaper, took advantage of the health struggles faced by people with type 2 diabetes to push his OWN agenda: Food Alarmism. In it, he claimed folks with type 2 diabetes were like alcoholics, who needed to be kept away from all sugar, and be on a fruits, vegetables, and grains only diet. 

It was a very hurtful column, not just for type 2 diabetics -- who get BULLIED constantly because of the massive amount of assumptions and misinformation in the news and media, but it also hurt type 1 diabetics as well. In his post, the man became indignant because the local type 1 diabetes organization in his community was having an ice cream social to generate funds so they could send some children to diabetes camp, and he confused them for type 2s. Not only did he wrongly confuse type 1 children for type 2 patients, but he also tried to be our food police! These kinds of strict views on food are the views that often lead to many eating disorders, and poor self images. Diabetics world wide were enraged, and responded swiftly against this level of ignorance. Soon thereafter, the newspaper took his columns down.

It was no surprise to me to find out he was a "Chef, Motivational Presenter, CBS Host, and Syndicated Author." It's always this type of 'persona' that want to stir the pot. He needed READERSHIP, and MONEY! And what a way to do it, than with food alarmism. 

Food Alarmism is becoming more the rage these days, what with the credible threats of pollution, pesticides, GMOs, cattle hormones, etc. There is no doubt that we, as consumers, need to become a little more discerning with what we put in our bodies, and be more mindful of moderation.  

The problem is that food alarmists feed on our constant food insecurities. They are like any intolerant religious zealots or fundamentalists: they leave NO room for anyone else to live life, or their diets, differently... PLUS they want to make money off of you. They feed on YOUR 'concern' and 'fear' and your desire to be 'healthy.' Then you go around recruiting OTHER people with your genuineness, and bring them over to their side. They can be just as bad for you, health-wise, as the fast food industry we so want to attack. They also love to claim they have the all the aswers, and the science to prove anything... taking advantage of those who aren't savvy enough to recognize junk science when they see it. Small studies with minimal results, studies with inconclusive results, studies done by organizations with biased interests, studies where little is known about the population groups used, or research promoted by people trying to sell you something, etc, etc. People regularly flock to 'The Doctors,' 'Dr. Oz,' 'Dr. Hyman,' and 'Dr. Mercola,' for their daily dose of alarmism. They DON'T care about how you felt better thanks to the placebo effect, when you took their supplements; they care about the $60 you spent on their supplements, or their books.

So, last year... intent on proving that we, diabetics, can control our own diets -- in MODERATION -- and that we do NOT need to be policed, or be on diets of just fruit, veggies, and grains only... I set out to create the first online, and worldwide, Diabetic Ice Cream Social.

I just got tired of people telling me what I can, and cannot have. Writing articles giving license to others to police, or bully me, or using their OWN fears of food to control my life... or assuming I'm a lazy slacker, or a person with a bad diet, if I choose to have a treat, once in a while. Over 2,400 people responded in support... and yes, I'm going to do it again. We need freedom to mind our own lives, and our own illnesses... without busybodies out there pushing us around as to what we can/can't/should/shouldn't eat. 

I've been criticized left and right this week, by a few who are against my social: 

• I'm irresponsible, and promoting gluttony (a moderated portion of ice cream hardly classifies as gluttony);
• I'm irresponsible and not promoting good eating habits (excuse me, moderation is a GOOD eating habit);
• I should instead write letters to editors, and just attack the problem directly (we can all raise awareness in different ways... but perhaps YOU should write the letters, instead);'
• I should be holding a 'marathon' or a 'walk-a-thon' instead (why? so that a lot of people aren't able to participate, because they have mobility issues, or neuropathy?) 
• That I am increasing the type 2 diabetes epidemic (surprisingly, this one came from a type 1 diabetic who should know eating a scoop of ice cream is not going to give ANYONE diabetes.) 
• That I am wasting my time, and instead I should go around collecting insulin to give to needy diabetics (ummm... how about YOU get off your behind, and collect insulin? If it needs to get done, DO IT... don't accuse me of not doing it! Do what YOU have a conviction that needs to happen.)

So... controversial as it might be, because of these reactions and more, I am convinced -- more than ever before -- that we NEED this type of awareness. Going around lecturing people on how sugar doesn't cause diabetes is not the most effective way to do it... Teaching people that moderation is what makes LONG LASTING healthy habits, and not just crazy, restrictive, fad diets -- IS. 

YES WE CAN. 

My numbers after last year's ice cream social.

(See also: The 'Betes Preachers)

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September 29th, 1985.

I remember I was with my dad, out in the country. My dad was a real estate appraiser, and often would go appraise homes or farms 2-3 hours away, deep in the Puerto Rican country side. I loved it. I put on my 'Tinkerbell' brand make up, and dressed up... and dad would let me take pictures of the properties. You got to see a different way life; farm animals up close, and the people were always so kind. Sometimes they'd pay you in fruit, giant bunches of plantains or bananas, or even legumes. Sometimes in animals, like rabbits.  (I came by a pet rabbit that I adored, this way.)

I don't remember the town we had gone to (it might have been Mayag�ez), but I remember it was raining soooo much, and we had to cross the A�asco river bridge. You could see the river was really right up to the edge, and it was quite scary. Dad took a risk that day, and crossed anyway. We made it home, but many other people did not... Just a few moments after we crossed that bridge, the river took the bridge, cars and all. 

To say we had a tropical wave is to put it mildly. We always have tropical waves. No one bats an eye. Some rain, no big deal. Except... I have never seen another tropical wave like this, that wasn't - well -- a hurricane. No one was prepared. The wave didn't have a defined center, so it was never classified as anything stronger, and no one issued any warnings, or was seriously worried.

But on September 29th, the rain began... and it didn't let up. We had about 32 inches of rain in ONE day. By comparison, Oregon gets 37 inches of rain in a year, and Hawaii about 23.

The night was even more horrific. We had no power for a long time, and would listen to reports from a battery operated radio.

There were many awful stories, but (in my mind) the most traumatic story came from a man who was travelling late at night, when suddenly and by grace, he noticed the bridge was out. (Many bridges fell that night, and I can't remember which one this was, but I do remember it was a very tall bridge with a river raging below. The river had taken the bridge.) He stopped his truck by the side of the road, and tried... as much as he could, to flag and stop other drivers and keep them from plunging into the cold, raging waters. But he failed. People thought he was a lunatic, a mugger... a crazy person. One by one, he saw many cars plunging into the depths... No one cared to listen. They were sure of themselves, and their judgments of the man.

The scene... played out in my mind over and over. It gave me many nightmares. (I was only 8...) The chance were I, too, could have died... also played in my mind. It was an unnecessary risk. A foolish risk.

This is how I sometimes feel, when I work with people with diabetes who are not exactly knowledgeable, or in control of their care. I feel like a desperate person, trying to flag down helpless people... unaware they're an inch from losing their lives, because of their own pride. 

• People with constant out of control numbers, thinking it's 'no big deal,' because they aren't 'as bad' as their previous numbers... or because they don't feel bad.
• People not getting on much needed insulin, afraid of myths, and stereotypes, or for crying out loud, of a needle, and poking themselves. (I'd much rather be afraid of the horrible consequences of uncontrolled diabetes than some needle.) 
• People who want to obey everything said to them by medical professionals, hook, line, and sinker... without much thought, or research; who stay on dangerous regimens, out of control numbers, and ineffective medications, or diets, because they're too afraid to say something, or seek a second opinion. 
• People being lead away by 'miracle cure' nut jobs, or crazy fad diets, and supplements. 
• People who won't check their blood glucose numbers, because their doctors said they didn't need to! 
• People who just don't wake up... no matter how much you share with them, or try to guide them. 
• People lacking in courage... to truly admit to themselves the seriousness of this condition. (Out of sight, is out of mind, I guess...)  

I know I can't police people, or change their minds... or tell them how to manage their diabetes, or how to tell when a medical professional is less than professional, or bad... or that they ought to seek more in-depth information about their condition. I know. But often, in groups, and forums... it sometimes feels like someone wants to start a conversation by asking you your opinion, and then not letting you have an opinion; telling you you're wrong... or just brushing you off. Or by bragging of their careless life. (Yes, there are occasional folks who brag about their out of control lifestyles... and not just occasional escapades, mind you, and bring down the whole mood of everyone around them.) 

As someone who has seen what it's like to die from ALL the most horrific complications of diabetes, I can't help but feel like that man, on the side of the road. I just do. Denial is a powerful thing... and I wish I could slap people right out of it. Uncontrolled diabetes (especially type 2 diabetes) is like a thief in the night; you don't hear it or see it coming... and one day, you've just been robbed blind. It makes some folks overconfident in themselves, and their lack of care. 

And these people... who want help, but don't want help. That is the MOST frustrating type of diabetic. And none of us can help them, medical degree or not, until they want to be the pilot in their care, and not the silent co-pilot. A Stepford Diabetic.  

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