The Most Annoying Person I have Learned to Love...

The day I lost my car... I became an avid pedestrian. Every local place became THE place to go for any goods and services. I really didn't want to lose my car, but the many months of being sick and at home, on leave from work and with no paycheck, left me struggling to make ends meet -- and well, car payments were not a priority. I let the car go.

Then shortly thereafter, I was diagnosed with type 2 diabetes. November 17th, 2009.

I thus began to get acquainted with a certain place a lot more often than I would have liked. A certain pharmacy. God, I hate pharmacies. I hate their smell, I hate their lights, I hate the waiting... and the lectures you get every time you get your prescription refilled as if you hadn't heard them before for like the billionth time. I've also never cared for the chit-chat. You know, the chit-chat cashiers always give you when you're ready to go. I'm sort of this anti-social who just wants to grab the crap she needs, and be on her way. No eye contact, no talking... bah humbug.

But, alas, there was Sally. (Sally is not her real name.)

Sally loves and loves to talk. Sally is very social. Sally always has something to say, and engages well with customers. Sally loves talking a little too much with her customers. I think she may have even gotten a bit in trouble for it before. It's not easy to leave Sally's side, by the register. Heck, she sometimes even comes over to you while you're in the isle to talk to you while you shop! She's always full of stories -- about the weather, about how things used to be in Ames, about her cat, about how things used to be in her hometown, about what's on sale, about what the best and most addicting snacks are, about her younger years when she used to have a career in social work, etc. Needless to say, Sally is very annoying.

Some days, when Rod and I used to go into the pharmacy together, we'd find ways to try and avoid Sally -- especially if we were in a hurry. Sometimes, we'd just want to shop in peace. Sometimes, we might have even gone to a different place altogether. But... in Iowa, politeness reigns. If we failed avoiding her, we'd still listen to Sally. Conversation began to get so involved... that now we'd be telling Sally our own woes.

Sally knew when I had no job or when I was underemployed with few hours, or when we were sick; when we had many, many struggles. Sally has often given us career advice, and even advocated for us.

In 2010, a devastating flood of epic proportions (the last of it's kind seen 500 years ago), hit Iowa. It affected the resources and properties of many folk. Our town lost a lot of water mains and pipes, and the water supply became contaminated. The advice was: purchase water, and if you're poor, please go to these local water dispensing sites we've set up. The problem was the water dispensing sites were SO far away, we couldn't get to them. Buses weren't going by certain areas either, because of flooding. Rod and I bought what little water we could, but then had no money left over for actual food. (And you know, with type 2 diabetes that's being treated with only diet, that's a rough ride... you have to seriously mind your carbohydrate consumption and you just can't survive on ramen noodles like someone else with a working pancreas could.)

Local Target store's parking lot, during the floods of 2010

I don't recall why we were at the pharmacy that day... but Sally asked about our day, and how we were faring with the floods, and well... we told her our woes, as had become usual. Sally, as it turns out, had been worried about us. Sally took us to the Red Cross -- Sally got us more water, and Sally took us to the supermarket and bought us food. Sally had endeared herself to us. Her quirky little self got into our hearts. She still, would sometimes, annoy the crap out of us... but our appreciation for her glossed over all that stuff. The stuff of being ourselves, squeaky wheels and all.

I don't believe in a god... and I don't believe that 'god' is love. I believe that LOVE is God. I believe WE are 'God' to one another, when we are in need, and our humanity calls... and we respond with love. And that day, when we needed her most, Sally WAS 'God.' Sally helped us see another healthy tomorrow... and not struggle for today. Sally was also... our advocate. Sally KNEW we had type 2 diabetes... Sally RESPONDED to those needs. (WE can be patient advocates to ANYONE with a chronic illness, with their needs, ANY given day of the week. The opportunities are everywhere. Look for them. THIS is also part of advocacy. Being the glue that connects everything... when all else has failed.) 

Now... about a few weeks ago, I started noticing something wrong in my daily trips to the pharmacy. I really didn't see Sally as often, anymore, and she didn't seem as chatty as her usual self, anymore either. She seemed tired, and I thought to myself, "She looks like she's aging pretty fast; she looks a lot older than she was a month ago." (I didn't say anything.) I really had begun to MISS my daily encounters with Sally, and that daily inconvenience of having to stop and talk to her... while in a hurry to God knows where. "Maybe she's just cut back on hours," I had wondered... or maybe she's got a second job...  or maybe she was spending more time with visiting family. (She always spoke fondly of family far away -- or with annoyance -- depending on who the family member was. lol)

But today, walking home from work, I heard a voice yelling at me from a block behind "Why are you walking in such a hurry?! I can't catch up with you!" I stopped, and turned around. I saw it was Sally... and I got a little annoyed that I had to stop, and wait for her... It had been a pretty tiring day for me, and my carpal tunnel was worse for the wear. Sally lives a block from where I live, and she wanted to chat while we walked. Fine, I could entertain this.

She asked me about ME, first. How I was doing... how Rod was doing. How we were coping along with life. She pointed to her new hair cut... and how she wanted it shorter, for it's getting so fine these days, it's harder to style. I don't really care, but I politely listen anyway... (Ever the eternal Oscar the Grouch.) Then she gently eases into the topic... The chemotherapy has been really hard... and Sally can't manage it anymore. I am one of the special, chosen people in her world, that she has decided to tell... and no one else. Sally only has 4 months left to live.

I politely listen... offer my company... offer to spend time with her when she's stir-crazy at home, if anything. Sally can't drive anymore, which is just the same... because honestly, I still don't have a car. We can ride the bus together, she says. It'll be good. It'll be fun.

I offer to walk her all the way to her place, but she declines. I give her my cell phone number. We say our goodbyes, and I go home. I reach the bathroom, and undress. I break down and cry, and cry... and cry...

I don't know Sally's real name. I've never asked.

What Patients Want From Their Clinicians...

I think a lot about patients' rights, and expectations; about what the most ideal medical care should look like for a person with diabetes. I've often thought of putting together a post regarding these thoughts, but I never quite had a catalyst to really help me organize together all the elements.

The time I spent at Medicine X really got me thinking more in that direction, and contextualizing my vision. Some of these might seem like basic tenets, but others are quite 'revolutionary.'

When I advocate, I feel I usually do so, subconsciously, from some of these starting points... and I suppose they could apply to just about any other health condition. These are what patients want from their clinicians:

To Be Afforded Humanity... With:

• Respect and Freedom: As a partner in a journey of self discovery. An equal who is allowed the freedom to disagree, respectfully, and to make a different (informed) choice from what the provider would have chosen. Not as a 'civilian' kept under the inflexible 'regime' of the provider, nor as a subordinate, ignorant layperson, or petulant child.
• Dignity and empathy: As potential mothers, fathers, daughters, sons, sisters, brothers, significant others; people with potential hopes and dreams, fears and anxieties, just like them. Not as cold hardware to be tested, and prodded.
• Encouragement: As persons in need of perspective, and hope, from those who have the positive power to guide us into better health. Not recrimination, or scolding, whenever we 'fail' at meeting a goal. 
• Acknowledgement: As partners deserving of their full attention, concern, praise or recognition. Not ignored when we present our health concerns, or when we reach an important milestone in care, or when we work hard to achieve goals. It is, sometimes, incredibly hard to jump through some of the hoops and obstacle courses which you demand of us... so please, give praise and positive feedback when we achieve them! 

To Be Afforded Effective Communication... With:  

• Patient Education: As partners fully capable of learning, understanding, and being challenged and tested, we deserve to be taught about our health conditions, and how to manage them, either by our clinicians, or by referral to those who can properly educate us and guide us into better health choices. There will be levels of education which each patient can handle, but we can all handle something. Not being told 'you have x condition,' and sent on our own, with nothing else to cope or fight back.
• Access to our data: As patients, and persons responsible for intimately managing a health condition, we should be allowed to know where we stand, with truth and honesty. Not to be left in the dark about one's condition, and progress... with only the provider being privy to the facts. 
• Proper Feedback: As patients needing guidance, at times when we may not feel safe making our own decisions, by returning our calls, e-mails, or messages, promptly. Not by relegating our most important concerns to other, less informed health assistants or personnel, nor by ignoring our efforts to contact you. If you openly make yourself available to patients, please honor that commitment.
• The whole story: As partners and patients who need ALL the information (and proper diagnostic testing) when it comes to choices for treatments, medications, and tools. Not being limited to a clinician's predilections, or the predilections of the company that might be paying them to promote certain tests, procedures, drugs, or tools. [We will gladly listen to your predilections (and sometimes choose them), because after all -- you are the medical professionals -- but you must understand that we are the experts at living with our condition, and need ALL the variables to be able to make informed decisions that might impact the fate of our future health, and our families.] 

To Be Afforded Quality Care... With: 

• Continuous Education:  As patients receiving exclusive care from a clinician or provider, we expect that they keep on top of new emerging technologies, new research, new data, and new approaches to managing illness. Not to take the minimal continuous education courses, and keep practicing on potentially outdated methods from when they first graduated medical school, which could fail to improve a health condition, or even make it worse.
• Embracing the researching patient: As partners, we expect to be embraced with respect when bringing in new data that can be studied, together, as a team. Not being chided for doing 'online research.' Medical research is growing by leaps and bounds, so it would be impossible for a provider to keep on top of all the information on their own... so why not partner up? We could solve a puzzle together, rather than 'against' each other. This is not about who has the diploma; it's about who ultimately gets to live with the decisions.
• Referrals to Specialists: As humans who know and understand that not everyone has all the answers and information to everything, and that sometimes it's best to embrace those who may provide additional insight or more specialized care. Not negating, out of ego or greed, the chance to expand one's medical team and "think tank," in order to find positive answers to puzzling health problems. 
• Committed Advocacy: As advocates for one another, by being our strong voice to health insurance companies, government, and especially the media, or those who might be ignorant to our condition, and thus seek to curtail our needs, and cut down our most essential and basic of services, remaining true to the Hippocratic Oath. Not by remaining silent to our needs, or cowering to the all-mighty dollar, because a businessman, with no medical knowledge, coerced you. 

For as many things as can be said about the healthcare field, and as much as times may change, I don't feel many are more important than these basic pillars, rights, and expectations. These are very essential, basic principles that we can all embrace and pursue in our futures. Often, we as patients can be difficult as well... and there should be some mutual expectations of cooperation, trust, and respect as "partners" and not subjugates. As the "Healthcare Street" is usually kept as a "One Way" road, I throw these out there as a sort of Patient's Manifesto of Rights and Expectations. 

Finding My True Hope: My Adventures at Stanford Medicine X

This is the fourth 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. :-) 

Patients learn to develop a strong voice. We have to... There are a lot of other voices, and interests, competing to be heard, and some, outright wanting to talk right over us. So, often times, a patient rises up above... and becomes an advocate: one who learns, and becomes an expert in their condition, as well as teaches others to self empower themselves, and keep going. As a part of that, it follows that the advocate will also seek to change their environment, change minds, and change the system as a whole. In that way, we're like a computer virus, really. We will never stop until we've re-written it all.  

Despite this same mission, advocacy comes with different voices, and we all get to choose that voice. I suppose... 

Though, when you have lost someone you love to chronic illness, I don't think you have much of a choice in what your voice will be. If you've worn gloves to help prevent infection for your father's in-home dialysis treatments... then, well... you no longer wear gloves much, if at all, when it comes to advocating for his needs, or the needs of someone else to follow in his journey. 

This might make us seem a little emotional, a little "Type A personality," a little pushy, a little obsessed, and perhaps... a little ANGRY. 

So, I don't want my dear readers to assume the worst from my Day 2, at Medicine X, either about myself, or about the conference. The reality is that my exchange on Day 2 is what makes Medicine X so unique, and wonderful, and freeing. Why, you ask? Why is someone talking down at me such a freeing thing? 

Well, the answer should be self evident: because I was allowed to talk back. Yes, I, THE patient... was allowed to have a conversation, to contest or refute, and to make a point. And for as much as I love other conferences, you're not going to find that at a TED talk. 

You don't need anyone to talk AT you -- you're an adult, and not a child. You're a being with as much critical thinking, and life experience, as anyone else holding a different type of educational background, or expertise. Honestly, there wouldn't even be any medicine without you... for YOU are the patient. And throughout MedX there were all sorts of folks expressing their various concerns, and input -- from Susannah Fox's now famous 'That's my research, and that's not how I chose to interpret my data,' to your regular advocate questioning potential 'overquantification' and privacy issues, to well, my now famous 'comment.' 

Medicine X is not a place for people to be 'perfect' -- everyone will have their biases, or their ignorance, or their differences of opinion or data interpretation. This is in no way a 'bad' reflection of the people who organize Medicine X, or of any of the participants, speakers, or guests, really. Nor is it a bad thing, at all. Medicine X is a place to have a CONVERSATION... and conversations bring outcomes, and education. Which brings me to... 

Day 3: The Doctors of Tomorrow... Today 

"Physicians are no longer the sole gatekeepers of validated health information ... The role of providers is evolving almost as quickly as technology. Value is no longer just knowing the right answers, but asking the right questions. And specifically, asking the right questions at the right time, the right place, to get the desired outcomes ... We are witnessing the evolution of value from content to context." -- Bassam Kadry, MD, Kadry Foundation, Stanford University, on the process and the whys of looking for new startups, and emerging technologies.

One of the most precious things I took away from Medicine X is that there are also other types of advocates: clinician advocates. The people who provide you with medical care, also tired of the state of affairs of their industry, and wanting to change their OWN landscape. Clinicians who understand that they are often, patients themselves. Or moms. Or voices for change, seeking to change the minds and views of their fellow peers, and embrace the new face of medical care. Doctors who understand that they no longer hold a monopoly on medical data.

Yes, that's right. 

Just like you and I... people who want to see change happen in how medical data is dealt with, how people are handled, how we all benefit from the system, and how well we all LEARN and make decisions together -- there are many, many, invested clinicians out there, who want to work hard to change the system. (And many of them work in boards, and foundations, who make conferences such as Medicine X happen.)

In the beginning, I thought "well, Medicine X is a conference about technology, and the bettering of medicine and patient outreach through technology..." but I was wrong. You see, it isn't just that... It's a lot more than that. Medicine X is a REAL coming together of PEOPLE: patients, clinicians, researchers, academicians, innovators, programmers and silicon valley entrepreneurs, investors, etc. People with various 'hats,' who make a giant think tank (and without all the noise in the middle from all the bureaucratic machines), and embracing their most creative self, seek to DO something about the problems... WITH technology. That's all it is. Thinking outside the box, with the new tools we have... and some cool music, and lights. :-) 

And it was so much fun! 

There were many sessions, some very hands on, and some going on at the same time in separate rooms, and I kind of wish I could have cloned myself to go to all of them. But hey, that's the beauty of technology, right? I learned about some of them through people's tweets, or through people's blogs... or through videos. Couldn't have done that as efficiently in 2002. 

My mind was refreshed and renewed with the beauty of other people's minds, and ideas... and it will be, for years to come, thanks to livestream. (If you haven't caught on, I have linked every "Day" subheading" to it's corresponding livestream link.) 

I love an analogy put forth by Esther Dyson (who spoke to me, and about my little comment, at Med X --  and it was quite an honor, really...) in which she discusses the breaking up of AT&T by the government. In essence, when AT&T was broken up, it really didn't fix the problem -- it only created a handful of other telephone companies, with (arguably) similar power. Instead, what really brought these companies to their knees was, what? NEW TECHNOLOGY. The wireless phone. Or otherwise, changing the rules. You take away their monopoly of data, and you get to redo the system. 

It'll be much the same with the medical industry. When we get together, and embrace the tools before us -- and how we tackle medical care and patient approaches -- we will get to rebuild that WHOLE puzzle, the way we wanted to from the beginning. The future is now, really. It's inevitable. 

... And in case you want to know, the speaker who I addressed with my little 'comment' was very receptive, and very polite. I am sure he will choose his methods more wisely, next time. (No, he was not an evil troll. Please forgive him. I have.) 

So... if I had to sum up my time at Med X, I could tell you that: 

• I was a lost villager... 
• Who found herself accepted for her self quantification... 
• And hence, found her patient voice and courage, 
• Leading to a true HOPE in her advocacy efforts.

I will try to share more, as I have time, on all the various technologies I learned. Maybe even arm wrestle someone into a guest blog post, or something. :-) But I want to personally thank everyone... for taking the time to read through my various blog posts, and ramblings. My 'life at Med X observations,' if you would.  

I may be the angry woman who writes about diabetes, but you folks make me the advocate that I am. I am indebted to all of you, and the wonderful people who gave me the opportunity of a lifetime to be a part of something big, at an institution such as Stanford University.

I will not... not ever... not soon. Never forget. ;-) 

Finding My Patient Voice: My Adventures At Stanford Medicine X

This is the third 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. :-) 

Friday had come and gone with a massive amount of information, stories, and knew technologies featured in a relatively small amount of time. To be honest, I'm still dissecting a lot of the information, and I'm grateful for the live-streams, and videos, which I can always use as a reference.

I'm also grateful for the dignity of finding one's bearings. Once we find those bearings, we regain a certain sense of confidence in ourselves, and situations, without which we may falter momentarily.  Finding my bearings came in the form of chit chatting throughout the day with others (encouraged by having to QR scan badges, and introduce ourselves), and by way of having dinner every evening with new friends. It was the validation I needed, really. A validation that comes from others who aren't just similar to you, in their struggles, but who also laugh at your jokes, and are probably just as irreverent as you! I made some great friendships I won't soon forget. I felt human... an empowered adult, in her own right, without pretense, instead of an awkward child, sitting at the grown-up table.

Day 2:  Patient Dignity

Okay, so they didn't call it that. They just called it "Day 2." But "Day 2" was ALL about patient dignity, in my mind... or well, the indignities patients have had to suffer for the sake of getting much needed medical treatment for themselves, and their loved ones. 

Being a patient with chronic illness often leaves you feeling like cattle, simply going through a 'machine' where you have no face, no back story... no humanity: just a being going through the system, the motions, the things put in place to achieve an outcome, a quota, or a financial goal, etc. And oftentimes, it matters not how well off you are, who you are, how famous you are... to be reduced to nothing. 

Meet some of the folks who fought back:

Michael Graves

Mr. Graves is an American architect, and Professor of Architecture at Princeton. You might not immediately know who he is, but he's more often known and identified for his creative designs for Target stores. I love Michael Graves. Heck, I have an alarm clock by him that I *adore.* I've had that thing for 10 years. It's easy to program, very intuitive, and with two separate alarms, it has allowed me to keep ever changing, weird sleep schedules. Best of all, it's beautiful to behold. 

But I digress... Michael Graves is an immensely talented human being. A designer, and an artist, in his own right. An optimist, and humorist. He was a person going about his life when chronic illness came striking at his door... In 2003, he became ill with a virus that spread to his spine, and left him paralyzed from the waist down. He recounts his initial symptoms, and his horrific experiences at the hospitals where he received emergency, and therapeutic services. It was his very traumatic, and dehumanizing experiences that gave him insight and a new passion to redesign the hospital room, and create bacterial resistant, patient-intuitive furniture... I could recount his story, but I don't think I'd do it enough justice... so you owe yourself the 40 minutes or so to watch his video below, complete with pictures of some of these rooms, and the work he's doing.

Most notably, you can detect a hint of sadness in Graves' account -- the sort of sadness of the self realization of not just his own vulnerability, of being at the mercy of someone else... and with little resources to make it through the day, but of others' vulnerabilities, as well. At one point, Mr. Graves recounts how CBS was interviewing him when he was in one of the therapy rooms, and they asked him "Michael, what do you think of this room?" to which he replied "It's far too ugly for me to die here." 

Regina Holliday

I can't watch her story without crying. I just can't. Probably one of the most passionate speakers at Medicine X, Regina Holliday is just a beautiful soul. Regina is Artist in Residence for Stanford Medicine X, and she uses her paintings to express the reality of the health care system, the need for clarity, communication, and accessibility to data and patient records, as well as the injustices and indignities suffered by the patient... including her own grieving process, and her own indignities. Regina speaks creatively, and passionately about patient's rights, and healthcare reform, and you can see she has invested much of herself in this fight through her national Walking Gallery project.

"You must look at the human face to determine what to do next ... "You must have patient participation in data and access, or you will never get the true story of care."

We must couple people's data with their stories, and never forget, or give up.

Most telling is the story of Regina pleading with her husband's doctor for his data, wanting desperately to know what was wrong with him... but being belittled, and dehumanized for doing so. "I don't like people that research online ... I'm the one with the medical degree." The picture she painted for that one event reflects a thousand emotions of one moment in time... a thousand emotions of desperation, trepidation, and ego. A thousand emotions we have probably felt, as patients, at one moment or another... but like scolded children, may feel a certain pang of shame to recount.

How do we change this reality? We write letters, we speak up, we stand up... we get engaged. We don't need partnership FOR, but WITH.

You must take us as we are... for we will never, ever keep quiet. We will blog it, twitter it, shout it from the rooftops... 

The Crux of Patient Centered Emerging Technologies

Interspersed with all these patient stories, Medicine X had also presented a diverse array of start ups, ideas, visions for the future, etc, for tackling confusing every day health tasks, or complex medical problems or processes. Whether it be shopping for your groceries (with USDA based guidelines, of course... something I will never use as a low carber), applications to help patients get in touch with clinicians at the wee hours of the morning, gadgets to help quantify one's quality of sleep (something I definitely want to use) or one's vitals during exercise, or applications to help simplify the potentially embarrassing scenarios of taking a urinary or fecal incontinence history... even online gaming communities to help scientists solve the puzzles of RNA sequence folding. Medicine X showcased it all.

They also discussed various obstacles to technology advancement, such as getting governments and current clinicians on board, the issues presented by HIPAA as well as personal privacy concerns, the 'realisticness' of expectations on the patient (will many of us really want to self quantify to some of the levels seen, and how well will that go over with feelings of exhaustion, guilt, etc.), and of course... accountability. Getting patients to actually DO, and ACT upon the new information gained.

This last one is a big concern in patient advocacy, as well as in the medical industry... but it is where we can enter a sort of murky territory: how far do we help the patient, without patronizing them, or minimizing their disease? I was a bit annoyed to see that some of the innovators focused on obesity and diabetes (generalized for the audience, without explanation of types) as the example diseases for whatever initiative was presented. One of the presenters (on Day 3) went as far as calling type 2 diabetes 'the plague of humanity' (never mind that he could of stood to lose about 40-50 lbs himself, and therefore heeded his own warnings.) 

I don't want to be a real negative bitch here... but there's really nothing more dehumanizing than someone calling your illness with which you have to live day in, and day out, as the 'plague of humanity.' Whatever shall I do? Shall I wear a D scarlet letter on my sweater? Shall I hide in the closet? Shall I find ways to hide the fact that Polycystic Ovarian Syndrome keeps me very overweight, and that my weight yo-yos off and on, despite best efforts, and low carbing? I wonder... 

Among other pet peeves, one speaker simplified diabetes as something that they 'proved' could be easily prevented -- even though the patients participating in his initiative already had pre-diabetes (and most likely a 40-50% beta cell loss), completely (of course, and probably out of ignorance) ignoring the whole questions of 'delaying' versus preventing, and 'remission' versus cure. All big topics I can't being to cover here... but suffice to say that despite lifestyle choices, many still go right on to developing diabetes, so lifestyle choices really only help us REDUCE risk of any illness; they have not, in our history as people, ever inoculated ANYONE against ANY illness... and then advocates like me have a very hard time bringing peace of mind, and healing, to people who were told they were in the clear. At the end of the day, we ALL need to have a healthier lifestyle -- not just diabetics. 

But, probably the worst offender, one innovator began his speech discussing type 1 diabetes... immediately jumping into scary statistics about diabetes (which vary greatly, depending on who you ask -- and were for type 2, not type 1) and intermixing those statistics with obesity statistics (which is really not 100% correlated to diabetes, otherwise all obese people would be diabetic, and is a disease in and of itself). To top off his confusing non sequiturs, he then went on to make jokes about why people in Great Britain were so overweight, and with diabetes, "so if you've ever had a British breakfast, you'll understand," and ended his session of explaining why we need data, and more data... because we don't want to live in a world where obesity and diabetes are prevalent. Really? Honestly, it's not that disease is something to be wanted... but the  benefit of having access to data is not really summed into a war against obesity and diabetes, it is summed into patient empowerment and action toward their conditions. THAT is what he should have said. Diabetes does not define me, but it is my REALITY, and as innovators, scientists, clinicians, persons engaged with patients... you had better damn well respect my reality... for when you don't do so, that is an indignity you heap upon me. 

You had better work on
your bedside manner NOW. :) 

And the funny thing of it is that I liked their initiatives! I really did! I liked their rationales, and their analogies... their applications. I *want* to support them... but they forgot my dignity. They forgot I am more than data. I am a FACE behind the data. 

So, at the end of Day 2 of Medicine X... I found my patient voice. And I thank them for that.

I found my voice, my bearings, and my dignity... and I got up, and I spoke out. Yes, on the microphone. Yes, I brought unwanted attention on myself. But, I thought "If I say nothing, now, I don't deserve to be a blogger... I don't deserve to claim I am angry about these things... I don't deserve to be an advocate... and I didn't start my blog to play nice." My apologies to those who paid to have me there.

The last few minutes of Day 2... I ended my day, with my knees shaking, my emotions on my sleeve, my heart rate through the roof, my courage being tested, and reminding the world, with a steady voice... that I am not a fat blob, having English breakfasts, who gave herself diabetes. I AM A HUMAN, AND I HAVE DIGNITY. I am NOT the plague of humanity.

I didn't expect people to get up and clap. I didn't expect all the attention, and comments, and support I've gotten since. I only went there to learn, and listen... not to make myself "famous," somehow. (Or infamous, really...) But I just said what I had to say. I'd probably do it again, too.

Is there some diabetes that is preventable? You know... I don't think anyone FULLY knows the answer to that. BUT SO WHAT? Does it mean I no longer deserve dignity if I do get it? If I "fail" to 'prevent' it? Should I now be excommunicated from the population at large? Should I be made as an 'example' to others? Should I be spoken of as a plague? As an unwanted thing in the world? 

Well, here's Michael Graves, and Regina Holliday... 

YOUR ARGUMENT IS INVALID. 

Our Lives, Quantified: My Adventures at Stanford Medicine X

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.

Wondering Outside the Village: My Adventure at Stanford Medicine X

This is the first 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. :-) 

The Palo Alto Westin Hotel is a small hotel tucked into the Palo Alto scenery, and spitting distance from Stanford University. Warm, and welcoming, employees genuinely seem to care about one's lodging needs. As I checked in (having completed a journey that began 9 hours before, at 2:00 AM, in Ames, Iowa), I gave the attendant $50 of my last $71, for a 'security deposit.' I really hadn't planned on THAT, so I was hoping the rest of the day wouldn't require any more money from me. (I also hadn't planned on everyone, and their mother, requiring a tip from me.)

After settling in, I went about the business of trying to find out what I was supposed to do next. I was a little outside of my comfort zone... Okay, a lot outside my comfort zone. Okay, "The Village" level outside of my comfort zone. I hadn't traveled anywhere in 5 years; heck, I hadn't even left my small town to go anywhere in the nearby vicinity, in 5 years. When you have no car and minimal financial resources, the world sort of closes in on you. Social media, and walking everywhere, are about the few things you have.

I was in the most expensive city in America, where I knew no one, where I had $21 left, where I didn't know how to use my loaned smartphone, and where I had planned to attend a session in 15 minutes in some supposedly nearby street. "Just turn right on University Avenue, up ahead," said the bellhop. Except, there was a train running through it. Yes, a train. Before I had a chance to wonder much farther, two gentlemen who seemed about equally lost -- but who knew how to use their smart phones -- asked me if I was going to the Stanford startup session. "Yes, I said," so I followed them. And follow the leader is what I did... all weekend, pretty much.

What is the Angry Type 2 Diabetic doing in Palo Alto, you ask? Attending Stanford sessions, nonetheless? Well, in case you missed it (which I almost did), last Spring I was selected (among many applicants) for a scholarship to attend Stanford's Medicine X Conference, in Palo Alto, California. I had applied at the suggestion of a friend, and quickly forgotten about it. :-)

At the time I didn't know much about Medicine X... but my curiosity was piqued. I knew the things I believed in: the patient, the patient's ability to quantify their experience, and social media to glue it all up together... and now Stanford University, via Medicine X, seemed to want to address all those things. Nothing makes one feel better than when the 'crazy' things one rants about get acknowledged by large institutions.

So, I took them up on their offer. I was, and am, confident that this is the future of medicine. It is, in my mind, one of the only ways to guarantee the patient has a voice. A voice that isn't clouded by the need to see 30 patients or more a day, 6 minute doctor sessions, and clinicians who are hell bent on not deviating from anything they learned back in 1976. A way to circumvent the little treatment and education patients with type 2 diabetes are receiving. A way for patients with limited resources, to make the most of their health situations.

But... after a week of being stranded at home, with the flu, and not being able to work, the little savings I had for this event disappeared in the form of medicines and bills. So I almost didn't make it out there. Almost. I have my family to thank for making this event happen for me. For believing in this little wild adventure on which I was about to embark.

And boy was it an adventure.

I really wasn't sure what to expect... and thinking I'd immediately see many of my fellow diabetes advocates, I had worn my fun-loving shirt "Diabetics Luv Pricks," for my travel day. It really made me an attention magnet, in ways I didn't want to be one. hehe "So what are YOU doing here?," "What exactly are you going to bring to MedX, with what you do?," "What's your role in MedX?," "I thought this conference was just for startups," etc.

People were really proud of being startups of their own companies (even if it was just a company of 1 or 2), and people were really... PROUD of being 'in the center of the universe,' as it was put to me more than once. And... it was a bit unnerving, to be honest.

Just like I did on my first day of college, I called home, and cried, and begged to leave. And just like on my first day, thank goodness I didn't.   :-) Culture clashes can be rough things.

The Goal is Food Independence

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.

The Diabetes Detour... Where am I, again?

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.) 

Raising Hell... One Ice Cream Scoop at a Time

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)

The Stepford Diabetic: The Most Frustrating Type of Diabetic

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 Mayagüez), but I remember it was raining soooo much, and we had to cross the Añasco 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.  

The Gastric Bypass Hype... Is It Really a Cure?

The headline declares: "Curing diabetes via surgery, without weight loss". It's a bold statement. It's enough to make one stop, and read. I admit I did just that.

Every week, it seems, we are bombarded with a new article declaring the magical, curative qualities of gastric bypass surgery. These articles make it seem like gastric bypass is the simplest, most sensible way of managing diabetes -- and gosh darn it -- everyone ought to pursue it so we can put a stop to this overwhelming epidemic that's going to just take over America, and murder us all. (Please note I am being sarcastic here.)

I admit I don't have all the answers -- if I did, I'd have long ago found a cure for all of us, and retired to my white castle atop a hill, facing the ocean. But what I can tell you is that I have a lot of questions and skepticism. And so should you.

Whenever there are articles like this, I look for red flags:

• Is the article edited properly? It might seem like a simple thing, but honestly, if someone in a professional, journalistic setting, doesn't care enough to edit their articles for grammar, spelling, content, and accuracy, they certainly might not care about outright lying to you to get some readership.
• Is the article unusually chipper or eager to present this as an 'all around' solution to a problem? Does it present ALL sides of the debate? Does it present ALL alternatives?
• Does the article portray accurate medical conclusions, information, and accurate explanations, or does it confuse the public about its target audience? 
• Does the article present accurate, statistical data, as has been reported by other research outlets, and scientific journals? 
• Is the study funded by third parties with deep pockets, and deep interests in the outcome of said study?

Taking all these questions into account, let's look at this week's gastric bypass article (which I have linked to above.)

Red Flag #1

The article starts off by telling us about Cristina Iaboni (a woman who was selected as a test subject for gastric bypass in leaner patients), and offers this description of her situation:

"Cristina Iaboni had the dubious distinction of being not quite obese enough. For all the pounds on her 5'5" frame, she did not meet the criteria for bariatric surgery to help control her type-2 diabetes.  

Yet six years of medications and attempts at healthy living had failed to rein in her blood glucose, leaving Iaboni terrified that she was on course to have her kidneys fail "and my feet cut off" -- common consequences of uncontrolled diabetes." 

Right off the bat, I'm kind of concerned about the quality of medical care Mrs. Iaboni may have received. Did her medical team question everything that needed to be questioned? Was she on insulin? When I read "6 years of medications," it literally screams at me that they kept her on every oral medication combination out there, and did NOT put her on insulin, like they should have. What kind of 'healthy living' changes did she attempt to make? Was she she still consuming a high carbohydrate diet, and just substituted her carbs for wheat, and whole grains? Did she even know how to carb count? Did her doctor ever test her for antibodies, and is she a LADA, instead? While the article declares she's 'cured,' I have the strong feeling this woman might rebound down the road.

Red Flag #2


Follow this logic statement with me: "If smoking triggers lung cancer, than smoking cessation should cure cancer."

Oh, it doesn't work that way, you say? Once you have it, you're stuck with it? Oh. Then why do some media and some 'researchers' assume that if obesity triggers diabetes (in those who are genetically predisposed, mind you), that losing weight should cure the diabetes?

The simple answer is "I don't know." The complex answer is "Because they probably have something to sell you."

Certainly, one can assume smoking cessation helps better manage cancer -- I am sure. One will be healthier, and respond better to treatments, and will have a stronger immune system... But one cannot say one is suddenly cured of the cancer. (Even when one is in remission.) Diabetes and weight loss are much the same: weight loss merely makes one healthier, and be able to respond better to treatments (ie, be more insulin sensitive, use less insulin and medications, sometimes none, etc.) These are only ways of tightly controlling diabetes, though, and slowing down it's progression. The absence of medicine is NOT an absence of illness. In this case, it is the strict diabetic patient's regimen that is the patient's medicine. The pancreas has damage, and this damage is irreversible, thus far. It is not, suddenly, magically healed.

Interestingly, this article seems ready to admit (though hesitantly so) that gastric bypass -- since people seemed to be 'magically' better just days after surgery -- proves that a diabetic 'cure' is NOT about weight control, or weight loss. However, here is where the red flag comes in: they are NOT willing to admit that the extreme dietary restrictions a patient must submit to (caloric and, consequently, carbohydrate level restrictions), post op, will play a role and immediately make less glucose available to the patient, and therefore, less high blood glucose issues. Now, normally, a patient who chose to control diabetes with diet and exercise would take a bit longer to achieve euglycemia (or normal blood glucose levels) when consuming a diet lower in carbohydrates and eating 'normal' amounts of food -- but they don't get a head start. A pre-op gastric bypass patient has to be on a type of fast with limited food and liquid intake, so they're already starting out with less available glucose in their system for a couple of days. Yes, they are going to have great numbers in just a few days. Barring other variables, yes, it's that simple, sometimes. I don't think this is rocket science.

Quite frankly, a patient could just go on the restricted diet, and skip the surgery, and achieve similar results... And not that long ago, some of these 'researchers' were practically claiming this same argument: A 'very low calorie diet' could cure type 2 diabetes. 


This article though, quickly sidesteps the discussion and dismisses it without much more than an acknowledgement.


Red Flag #3


The idea that type 2 diabetes begins in the gut is not a new one. It has been, however, a seldom reported one.

More commonly, you see articles speculatively linking the bacteria most known for leading to peptic ulcers (h. pylori), to endocrine disorders (as well as diabetes), and these have been quietly making the rounds since at least 2009, maybe even earlier. There's even an interesting study dating back to 1999, and involving children with type 1 diabetes, insulin requirements, and the presence of h. pylori. The most recent finding came this month, and it involves h. pylori and it's impact on A1C.

The underlying message is clear: bacteria, and inflammation, alter the body's ability to process glucose -- whether in the stomach, or in the gut.

But are the researchers missing the obvious clues? They mention that 'in the past,' patients with peptic ulcers who had surgeries altering their stomachs, and gut connection, 'cured' their diabetes. Or did they just achieve better control of their diabetes because a.) they were now having to, forcefully, eat far less, and b.) the surgery removed chronic inflammation from bacterial infection (which would have dramatically raised blood glucose levels)?

Other articles, and research, have pointed to a bacterial imbalance in the gut as a trigger to an imbalance in processing glucose, and development of type 2 diabetes, but they do NOT suggest surgery for 'curing' the disease. In fact, they suggest a more preventative method -- receiving gut microbiota transplantation. This seems to me like the less invasive, less dangerous, less costly and time consuming, way to go when it comes to researching a cure. Why are we not investing in this? Why is there such a PUSH for getting this dangerous surgery?

The attempts to also connect this surgery to a potential 'cure' or reversal of type 1 diabetes seem a bit far fetched, and improbable to me, and make me question if this researcher has a proper understanding of the etiology of type 1(a) diabetes -- and that it isn't just an insulin insufficiency scenario. I'm pretty sure people need insulin to live, and for many various metabolic functions, and just 'bypassing' a gut mechanism isn't going to make a person insulin independent. I'd like to see more than just three sentences in a poorly edited FOX news article, on the matter.

Red Flag #4


Numbers.

These articles always seem to exaggerate diabetes incidence numbers. This one is no exception. It claims that 8.3% of the world's population has diabetes, and that 11.3% of Americans, have it. Honestly, I don't know where the 11.3% figure came from, with these folks -- but according to the most recent data (released January 26, 2011 -- and not the 2010 date these folks claim) released by the American Diabetes Association, only 8.3% of Americans have diabetes -- and this includes all types, and the undiagnosed. 


Similarly, these folks make these grandiose claims for the 'remission' rates of Roux-en-Y to be 80-85%, and to be incredibly superior to other forms of gastric surgery. But major studies DON'T show that.

"New research reports that no procedure for weight loss surgery is any better at treating diabetes than another. The study, presented May 7 at the International Congress of Endocrinology/European Congress of Endocrinology in Florence, Italy, uses a large ongoing study to show that improvements to diabetes in patients undergoing such surgery is likely to be due to the degree of weight loss itself rather than the type of procedure." (http://www.sciencedaily.com/releases/2012/05/120507102225.htm)

And here's a more startling fact...

"Weight loss surgery is not a cure for type 2 diabetes, but it can improve blood sugar control, according to a new study published in the British Journal of Surgery. Whereas some previous studies have claimed that up to 80 per cent of diabetes patients have been cured following gastric bypass surgery, researchers at Imperial College London found that only 41 per cent of patients achieve remission using more stringent criteria." [emphasis added by me] (http://www3.imperial.ac.uk/newsandeventspggrp/imperialcollege/newssummary/news_4-1-2012-13-32-26)

And that's the ticket here, isn't it? What kind of criteria are these folks using to claim someone is cured? What are their A1Cs, now, and what are their average blood glucose numbers like? I've had folks tell me "I have an A1C in the 6.5% range, so I no longer have diabetes." But wait a minute? That's the number used to diagnosed diabetes to begin with! 

Hey, but you no longer need medicine (for now, anyway), so you must be cured, right? It sounds so pretty... It sounds like such a good sell.

And because it sounds like such a good sell... I give you:

Red Flag #5

"The cost of the bypass surgery is covered by a grant from Covidien Plc, which makes laparoscopic instruments and surgical staplers." 

Oh, so let me see... the people who profit the most from this surgery are the ones funding a study to tell me how awesome this surgery is, how high a success rate it has (even though it is absolutely not supported by independent studies), and how I will just be so cured.

Hmmmmmmmm. Let me think about that. Fox guarding the hen house much? This reminds me of last year, when the ADA published a study done by the Australian Dairy Association, claiming that milk consumption lowered risk of diabetes.

Of course you're going to tell me it's awesome! You want me to buy more of it, and you want me to fall in love with it. You need to make money, too, like everyone else! It's MARKETING.

The problem comes when the money making interests muddle the big picture, and really go against the best interests of the INFORMED patient.

What am I trying to get at, with this blog post? 


Should you avoid gastric bypass? Is it a dangerous alternative?

These are questions you must weigh for yourself... but what I would like to see is for patients to be able to weigh the TRUTH against the hype. NO ONE should promise that surgery will be a success, that it will heal and cure diabetes, or that it will be complication free; but, instead, they must help guide the patient to a point where they can soberly weigh their current health risks against the surgery's very real risks and potential failures. It is easier to accept the roll of the dice when we know that risks are possibilities -- and when we aren't lead to believe that this is just a simple, routine procedure, that will fix our woes forever.

More importantly -- the type of lifestyle changes required by these surgeries are far more demanding than say, pursuing a low carbohydrate regimen (like Berstein's Diabetes Solution, or Atkins), or even raw dieting. If a patient fails at these, or simpler life style changes -- when their life is not at stake -- what makes them feel they could do okay with the dietary demands of such a surgery? Because they got 'two weeks' of psychological counseling pre-op? Disordered eating, and compulsion, take years of counseling to improve (much more to 'fix')!

Additionally, studies have shown that after some time, people's diabetic symptoms may return, and some folks even regain weight and end up pursuing additional gastric surgeries. I am not entirely sure that the costs of surgery, with it's attendant complications, are worth my getting a 'free pass' for a few more years; especially, when I can just give myself that free pass with a more calorie restricted, low carbohydrate diet.

And I don't know about you... but I just like eating food in portions larger than a peanut.