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.