and, oh, what a change there’d be

medx

so you have heard of medicine x,

the conference at stanford university that truly integrates patient voice and perspective,
the conference that trends on twitter because the online component is exponential

and maybe you have thought about applying
maybe you decided not to because you aren’t sure you have something unique to contribute
maybe you decided not to because those ePatients are big names and you’re not sure you fit in with them
maybe you decided not to because you didn’t think you would be accepted
maybe you decided not to because you have a propensity to deem yourself unworthy

i am writing to tell you this:

you DO have something unique to contribute: no one else knows how you experience your condition as well as you. you are supremely qualified to lend perspective.

you DO fit in with the big name ePatients: there isn’t a single ePatient who started off ‘big’. they put themselves in situations to grow to get where they are now. they are human. they are patients (just like you) who at one point or another were unsure about which megaphone to use.

you DO have a great chance of being accepted: medicine x scholarship recipients are not selected because they already have a massive following, nor because they have already shown themselves to be a ‘successful’ patient advocate. medicine x scholars are simply patients who see gaps in their health care AND want to do something about it. since the amount of advocacy you have already done is not the determining factor for being selected, even if you don’t have a bazillion twitter followers or write a blog, you are still and viable candidate.

and last but not least,

you ARE worthy. the end. no questions asked. without a single doubt. cross my heart, hope to die. if this is what holds you back the most you should know this… there is only one person in the world who does not support your success, and that is you. and that feels weird to say, but it is TRUE! all of your fellow advocates want you to succeed because we love you, but also because you being there means that as a collective we are closer to making the changes we want to make. you are worthy. you.

you and only you have the ability to share your experiences because no one else has your experiences. they are yours. when you don’t share them, they go unheard.

don’t go unheard.

apply for medicine x 2015, because you’re worthy and because our community deserves a representative like you.

if you are still unsure about applying, listen to this song. bring out all the love you hide and, oh, what a change there’d be…

i believe in you.

i am the one

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i’ve been working out my applications for doctoral programs as of late,
crossing off all the little ticks:

pre-apply. identify programs of interest
1. complete online app
2. acquire both official and unofficial transcripts
3. write many versions of personal statement
4. appeal to current professors for ‘the right fit’
5. connect with writers of recommendations
6. study for GRE
7. take GRE
8. win

there are multiple tiers within each step, but i’m posting today to talk about number four.
i’ve emailed several professors in programs like personality and health psychology, disability studies, community psychology, and heath research and outcomes. i’ve done this without much success.

most profs respond a ‘apply, but i don’t do diabetes work.’

i understand this response. good parts and not so good parts in there. the first part generally means, ‘you’re qualified enough for us to look at you.’ the second part equates to, ‘i’m not who you want to work with because i can’t help guide your work in the area with which you wish to concentrate.’

thats the first part. fine and dandy. not great, but not a total let down. i can work around that. right? i can use my words to make what i want to do fit with what they want to do. i can work it out. perhaps some compromise is in order, but i got that, no problem.

the second part of some emails i’ve been receiving is the part that concerns me, the part that draws worry lines on my face like war paint…

it is the part where they challenge my ability to be objective in an area that is clearly so close to me.

verbatim, from professor x ( not THE professor x ):

“It is not always advisable to study a topic with which you have a close personal involvement. Again, it is about scientific objectivity here and not advocacy or clinical work.”

i had three reactions to this. first, a sigh and a, ‘maybe he’s right.’ second, a wait a minute, this is exactly what i have been learning to argue against. the third is to follow.

if medx taught me anything, it’s that patients need to yell to be heard.

we have to fight our way into the design of studies because often researchers simply aren’t asking the questions we want answered. researchers are missing the mark because they are too far removed from the people who live with the diseases they are studying.

i am a patient and maybe as a result my objectivity will be slightly skewed. maybe.

i am a patient and i have the insights to ask the right questions; the questions that will directly impact the non-profits, government programs, and people living with diabetes.

i am the one.

third.

my last and final response, i beg the question…

dear professor x:

kindly, mr. i ask that if you are performing research that is not meant to translate into any kind of clinical or advocacy work, what is it meant to do?

i am the one.

i am the patient researcher turning papers into programs.

I am.

cough cough:
wahbam. :)

the crystal ship is being filled

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on day 0 of medicine x, i, along with other epatients, attended and participated in a special event called “partnering for health” sponsored by eli lilly and company.

the day revolved around clinical trials. hearing from the patients who may take part in said trials was the goal of the day.

eli lilly wanted us to understand the challenges in creating and recruiting for a clinical trial before we offered much feedback/reflection. they prompted us to design a trial for fresh-on-the-market medx cola. it was a fun and engaging exercise and i may write more about that later. this post is dedicated to something else.

after our lunch break, we reconvened and began hearing about a case study. the point of the talk by eli lilly was to demonstrate a need for patient engagement in the enrollment process of their clinical trials.

however, the topic changed when scott strange, awesome diabetes and mental health advocate, raised his hand and spoke the words, “your presentation was good until i stopped listening.”

i shared this on twitter about five minutes prior to scott’s comment:

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many of us in the room had gotten lost in the science presented in the powerpoint. it got too technical. the bigger picture got swept over and translation error turned the tune of the dialogue.

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we started talking about the idea that maybe recruitment at its peak because patients or (i really don’t like this term but i’ll use it for the lack of a better one) lay people do not understand the medical jargon used to rope us in.

i’m certainly in that boat. i give up easily on trying to ‘get it’. i skip over big words.

we had a dynamic and constructively productive conversation after that about how we could work together to make the language of clinical trials more accessible to the patients interested in them:

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many of us were surprised that eli lilly was so accepting of our comments:

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overall it was a wonderful day.

and just for funnzies, i wanted to share with you an essay i wrote four years ago, which seems like a life time ago if you are only 24 (which i am). i just copied and pasted it from my assignment folder in word.

it is funny to see that some of these ideas have been up in the ol’ noggin for quite a while. funny how it felt like the first time i’d thought them while at medicine x.

enjoy…

– – —- – – – – – essay – – – —- — – – —

March 15, 2010

The Illusion of Disease

The word “disease” connotatively implies a certain level of discomfort; to be dis-eased is to be ill-at-ease, to be distressed, to feel troubled. Putting language aside, one must question what the actual term signifies. On a more concrete level, disease is a thing, a pattern one can observe at the microscopic level, a genetic defect, a condition that harms the health of bodily organs. At this level, disease is not something one can choose to be at ease with, but rather a malfunctioning part of the body. But more conceptually, more abstractly, one must recognize the socio-cultural nature of disease the concept. There is a philosophy to disease in western societies where the average person has access to a multitude of medications and therapies. The United States exemplifies a country where disease the concept has harsher and more damaging consequences than disease the thing. This essay will explore disease philosophically by examining the general view, treatment, and practice of disease in the United States.

Scholars who have contemplated this issue tend to fall into one of two philosophical groups: Objectivist or Constructivist. Their debate rallies around the possibility that disease could be a product of culture. The Stanford Encyclopedia of Philosophy offers the following clarification,

“Some scholars, objectivists about disease, think that there are facts about the human body on which the notion of disease is founded, and that those with a clear grasp of those facts would have no trouble drawing lines, even in the challenging cases. Their opponents, constructivists about disease, maintain that this is an illusion, that the disputed cases reveal how the values of different social groups conflict, rather than exposing any ignorance of facts, and that agreement is sometimes even produced because of universal acceptance of a system of values.”

Disease to a small extent is objective. One must accept that bodily processes do have the ability to malfunction. However, one must question: who are “those with a clear grasp” of medical fact? Could it be that they represent doctors, surgeons and nurses employed in the medical profession? According to the New York Times, only .2% of the population are practicing physicians. If this is the case, one must wonder how “clear” is the “grasp” of the modern typical, non-medically educated patient-consumer? It is clear that the number of Americans taken by the illusion of disease is pretty high.

Constructivists believe that disease is created and maintained by social structures; the seemingly objective analysis of bodily malfunctions is actually subjective because the measures of disease are all relative. A society formulates a norm, and then uses deviation from that norm as a basis for diagnosis. Therefore, diseases are not actually malfunctions of bodily processes but rather, an anomaly from a generally accepted notion of what should be. The objective reality, no matter who is looking through the microscope, is lost in the translation. When members of the American society fail to recognize the cultural impacts on their notion of disease, they easily slip into an ignorant belief that disease is always concrete.

It so easy, so natural to fear the unknown, fear what one cannot observe outright. Death is highly feared in the American culture because, by nature, the qualities of such an experience remain a mystery. In turn, because disease often leads to death, it is both mystified and feared as well. When fear overtakes modern patient consumers, it is difficult for them to distinguish between the actual thing (the microorganism or the actual germs), and the pent-up, over-fed fear of the concept. This is the illusion of disease. The confusion of feeling sick leads the individual to anxiously search for a method to become well again. In this modern age, the Internet has equipped everyone with a limitless supply of knowledge on every subject imaginable- especially in the realm of health.

Countless websites, such as thehypocondriac.com and healthline.com, offer search boxes where anyone can type their symptoms and view possible reasons for their discomfort. They will become frightened into thinking they have some serious, yet highly unlikely ailment.. And from that point, the placebo effect kicks in. A person feels how they think they should feel and once they have received the treatment they think they need, they feel better. This circular system leads people to believe they have non-existing illnesses; it is a system which breeds hypochondriacs. A person can only find the cause for a symptom when he or she has something else to relate it to. And when that person knows certain ailments exist, they look for it in themselves. These websites provide the masses with a tool to create and harness illness within themselves. This, however, doesn’t occur because Americans are stupid, but rather because the average person does not know how to interpret results written in a language they cannot understand, which in turn causes them to worry unnecessarily..

Because the language of medicine is nearly incomprehensible to a person not medically trained, that person is more prone to succumb to the illusion of disease. If one cannot interpret the language of disease, one cannot begin to understand what it really is. Mike Adams, a holistic nutritionist and author of over 1,500 books on the topic of disease prevention wrote an article about the illusion of disease in which he addressed the issue of language. Adams writes,

“Type 2 diabetes isn’t technically a disease. It’s just a natural metabolic side effect of consuming refined carbohydrates and added sugars in large quantities without engaging in regular physical exercise.

The name “diabetes” is meaningless to the average person. It should be called Excessive Sugar Disease. If it were called Excessive Sugar Disease, the solution to it would be rather apparent.”

Adams is suggesting here that if the names of common diseases were written in terms that an average person could understand, disease would not be as feared. Patients could then be able to understand ailments more clearly, and then disease may appear less threatening. Correcting the American culture’s view of disease could be as simple as renaming diseases to make them more understandable. However, renaming would take a very long time, as there are a lot of diseases known today. Another method of improving the general American understanding of disease is to change the structure of treatment within the healthcare system.

According to CBS News, the national average wait time in an emergency room is one hour. In some states, such as Utah and New Mexico the average wait time can be even longer – as much as four to five hours! “Wait time” here indicates time before a patient gets to see a physician. During this wait time a patient is asked to provide all medical insurance cards and general information. If a person does not provide this information, they will not see a doctor at all, which makes one wonder the incentives hospitals have to treat patients. Are the bureaucratic hospitals of capitalist America really interested in helping patients get well, or do their interests lie in profits? It is certainly true that if everyone was healthy, then a hospital wouldn’t make any money. In a capitalist system – where profit is of utmost importance – disease becomes a foundation upon which one can build a profitable structure. If a company can manipulate consumers into thinking they are sick, then that company can build a greater profit. As long as people think they are ill, they will purchase medications.

Once a concept is formed it can be utilized and manipulated in many different ways. The modern patient-consumer is generally ignorant, and thus understands illness to be only treatable by medication. A concept of disease that stemmed from the European Germ Theory has been twisted and skewed so that it benefits the medical and pharmaceutical companies more than the patients.

Doctors find and diagnose new diseases every year, and as a result of those diagnoses, drug companies are creating, advertising, and selling medications for them. These companies are producing new medicines faster than they can be studied, and often times, their side effects create more problems than solutions. America has created for itself a system that perpetuates disease. Today one can be diagnosed with Restless Leg Syndrome, and find medicine that theoretically targets and represses leg movement so that a person can sleep. Introducing a previously “undiscovered” illness, such as Restless Leg Syndrome to the American society, is not intended to benefit those who have leg pains. It is instead, a strategy made up by the pharmaceutical and marketing companies to sell more products. Had a commercial advertising the disease never been created, leg pain wouldn’t be a disease, it would just be, well, a leg pain. American companies have developed this trick to magnify the potential risks of disease for their own profit.

While disease is a concept, no sane person can deny that disease the thing does exist. One with diabetes cannot say that the malfunctioning part of their pancreas is a factor of thought. Nor can one with cancer say, “Since I do not believe in disease, cancer does not exist, therefore I don’t have it.” Such a suggestion would be nonsensical. To be free from disease does not mean immortality; to be free from disease means to live without fear, without the obsession of what might be. Individuals can make a positive change towards a less fearful vision of disease, so long as they have the support of institutions that treat and practice medicine. What would it take, then, for the United States and other western countries to positively influence the general understanding of disease as a concept? The answer is simply a change in motivation. If full attention were directed towards actually helping those who are sick, then the society as a whole would be freer from disease. If money came second, then America could see the illusion of disease for what it is: just a tool for profit.

Works Cited

Adams, Mike. “The Illusion Of Disease.” Jeff Rense Program. 14 Mar. 2003. Web. 18 Mar. 2010. .

“Concepts of Disease and Health.” Stanford Encyclopedia of Philosophy. Metaphysics Research Lab, CSLI, Stanford University, 22 Sept. 2008. Web. 18 Mar. 2010. .

“Study Finds Number of Practicing Physicians Previously Overestimated.” Becker’s Orthopedic & Spine Review. New York Times, 27 Oct. 2009. Web. 18 Mar. 2010. .

sun, sun, sun, here it comes

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in the wake of the great and powerful stanford medicine x conference, i want to share with you a recent trip i took. it all started in the bar where i tend.

i’m doing my thing at sleepy dog brewery, pouring and delivering beers, when a woman walks in. erica. she has been in before, but this time her pal from work, alex, is coming in to join her. they work nearby.

as i’m turning around to let the computer know they will both be having our tail chaser ipa, alex notices my well-displayed dexcom sensor sitting pretty on the back of my arm. or maybe he sees my diabetes alert tattoo first and then the dexcom, but either way…

he asks if i have diabetes, to which i reply ‘indeed i do.’

he tells me that him and erica work at the tech group, which is a manufacturing company that produces some of the dexcom parts.

my next question leapt from my mouth faster than a light switch. BAM!…

“do you do tours?” i begged, eager and hopeful.

as he answers yes, i begin to dance the cabbage patch. okay, i didn’t really do this, but that is what i felt like doing.
. . . . . . .
between the time of this exchange and his departure, i had shared with alex that i write this blog, that i’m an active member of the DOC and that i attend conferences as often as possible. i learned that he keeps up with some diabetes blogs and frequents the diabetes mine. he took my email, gave me his card, and by the time i woke up the next morning, there was a message in my inbox about setting up a time to have me come in.

so began my trip to the tech group manufacturing facilities, a place where many dexcom parts are made.

visiting tech group: august 22nd 2014

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when i first walked in the door, i was delighted to hear “are you heather?.” feeling expected rather than unknown is such a wonderful thing.

moments later, as i was signing off on the liability waiver, alex greeted me.

we walked into the offices area, then into a nice conference style room. alex taught me all about the tech group via powerpoint. he also shared with me that the office collective takes part in fundraising for a local charity. a part of that fundraising is in the form of a cursing box. each time you curse, you pay money to the box. that money gets donated. good system. good people.

. . . . . . . . .

after telling me about the history and workings of the tech group, alex introduced me to some co-workers. one woman took a minute to show me a letter they received from a young boy thanking them because the dexcom sensor improved his quality of life. she was so touched by this. it reminded me of the disparate goals between the business and end-user/patient.

as a patient, i want to believe that new technologies are developed and disseminated FOR THE PEOPLE USING THEM, to make life better for us. i want to believe that money isn’t as important of a factor as it is in reality.

i didn’t witness anything at the tech group that led me to believe that they didn’t have patients in mind, but i wasn’t surprised that a great majority of their employees had never met a patient using the final product they help to build.

alex took me on a tour of the machines next. it is a clean room, so we had to garb up. i’m disappointed that i do not have a photo of us in the clean gear, but you’ll just have to use your imagination. we looked like surgeons!

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i learned a lot about how they make dexcom parts and was very impressed with their speed of production. specifics escaped me, but one thing in particular grasped me in all the right ways.

every dexcom adhesive patch is hand-glued to the plastic piece that holds the transmitter. i saw the women and men sitting down under bright lights, performing this glueing procedure. i was so strongly comforted by the fact that human touch occurred in the process. after seeing all the the huge, cold, machines pictured above (i got the image from google), the human part brought the dexcom to life.

people. people are making this medical equipment i use everyday. people are making the thing that improves my quality of life.

human touch.

. . . . . . . .

the good news and why this ties into medicine x:

after the factory tour, alex introduced me to many of his co-workers. dave, one of said co-workers even invited me to come to the tech group’s upcoming quarterly meetings to share about my experience with the dexcom.

the people who work the machines, the people who give human touch to my medical equipment will be there.

i can’t wait to be a connection for them. i can’t wait to thank them for making the thing that literally makes my life better, my diabetes more manageable, my data more expansive.

i can’t and to tell them that wearing the sensor they make might even help me live a longer life.

. . .

i would love to come prepped with statements from others in the DOC about how their dexcom improves their life.

what would you want to share?

something only we know

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welcome to medicine x. you,
sit in a room filled with powerful, strong headed people
living with life circumstances you really can only begin to imagine
and you listen.
you try and be a sponge
while also lending hugs and handshakes, you
might meet the same person five times.

load up your twitter, tweetdeck, tweetchat, hootsuite interfaces
and wait for the magic to begin
hands prepped like a cobra, ready to strike the keys.
it’s like you’d already thought that before,
pouring heart a soul, bearing.

#medx trending. you,
contributing.

feeling like something big is happening, your
breath gets bigger, your
scope doubles in diameter, you
see that exponentially more is needed to initiate a wave of change here.

because
a raindrop does not cause a tidal wave.
and you can change little alone.

but we…
can maybe do something more.

maybe.

oh, the activated patient?

welcome to medicine x, a conference about bridging developing technology for health, patient perspective, and healthcare providers insights!

guaranteed to make you feel simultaneously warm and fuzzy AND activated and pumped (not a diabetes pun) AND frustrated AND …. (here’s the bell ringer)… SUPER-DUPER.

today during a session called ‘the new pharma,’ an image popped in my mind and mike brought it to life superbly. exactly. to the tee.

mike lawson’s beautifully hilarious visual:

activated

during this panel, i was overwhelmed by a sense that there were varying perceptions of the people sitting at the front. the ones in the white chairs.

us. the patients. the, activated, patients. the people recording and analyzing your words as you speak on stage. waiting for gold nuggets and lumps of obsidian.

to many, we are heroes here.
we are representing our patient populations to move health care and technology to a place more centered on the end-user, to a place more centered on… us. we enact change, far beyond our own reach, for the better.

BUT

to many, we are monsters here.
we come in an stir shit up. we demand changes. we lay down imperatives for inclusion and partnership and inclusion and inclusion and inclusion. we gather our own data and take up extra clinic minutes without paying more to get an analysis. we hack our devices, we correct you when you’re wrong. we speak up. every. time.

today, i felt parts of the monster within myself.
today, i felt parts of the hero within myself.

today, at medX, this new dimension (let us call it gol.D-socks) of being an activated patient became clear to me

do too little to self-manage and my doctor feels like i’m a lost cause and thus, a burden
do too much to self-manage and my doctor feels like i’m stubborn and thus, a burden

do just the right amount to self-manage and my doctor feels like she is helping, and i am too.

if i villainize my doctor because my diabetes advocacy wheels won’t stop turning, she will villianize me.

truth?

that ribbon of highway

all the way back on the first day of this year, i jotted down a list of diabetes related goals for the year. it has sat in my drafts since then, probably wishing it had legs to walk and a voice to talk.

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i read over them this morning and decided that i wanted to give them a chance to speak and to show the progress i feel i have made with each of them.

here are the goals i wrote on january first:

1. i am going to keep looking at my 7, 14, and 30 day averages when my blood sugars have been whacky.
(i haven’t even kind of done this)
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2. i am not going to feel like a whole day of trying for good blood sugars is ruined by a morning #bgnow over 200.
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3. i am going to go for that run with level up packets tucked nicely my fanny pak and not panic if i dip a little low.
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4. i am not going to skip a doctors appointment because i feel shame in showing her my readings.
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5. i am not going to wait until a week before my endo appointment to ‘try harder’ at diabetes management.
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6. i am going to spend an extra two seconds to tuck in my pump cord

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7. i am going to look into getting a dexcom and either get one or get a 530 g

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8. when i get a new cgm, i will actually wear it

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overall, i’m feel pretty good.

cheers to september!

i’m medicine x, and you should too.

in a little less than two weeks, i will be tweeting and blogging and face-booking to you live from:

med x

the stanford medicine x conference centers around emerging health technologies and therapies that integrate market, academic AND PATIENT perspectives.

back in february, i was selected as an ePatient delegate for the conference this year on partial scholarship. along with other members of the diabetes online community, scott strange, dana lewis, chris snider, and kim vlasnik, i will do my best to both represent and include you in the discussions and information being shared.

thankfully, the entire conference is going to be accessible to you! i highly, highly encourage you to sign up and attend the conference from your home. when you get curious about something or have questions, we will be there to ask them and mediate.

heather gabel (me!): @heathergabel
scott strange: @Strangely_T1
kim vlasnik: @txtngmypancreas
dana lewis: @danamlewis
chris snider: @iam_spartacus
medicine x: @StanfordMedX

i am so so so so so so so so so looking forward to this one guys…

you can sign up for the global access program here. it is free, you simply have to sign up!

win, win, right?

looking forward to chatting with you there <3

and so it is the shorter story

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he shared a parable.

as it goes…

there is a flood
firefighters rushing door to door to help people to safety
knock knock and a man answers, his family behind him.
“hurry up” begs the fireman,
“no, our god will save us” replies the man.
the waters rise,
and the man and his family climb to the roof.
just as the water approaches their feet,
a helicopter flies overhead
with his arms outstretched
“grab my hand!” calls the man dangling down
“no, our god will save us” replies the man.

the family is taken by the waters of the flood,
and put before their god
the man asks, with his family behind him,
“why didn’t you save us?”
“i tried. first the firefighters and then the helicopter.” replied his god.

————-
he was having a cherry hefeweizen, there to chat with others from the skeptics group.

there was another person with diabetes there, kept turning down beers because of ‘the betes’. there’s a line i’ve used before. ;-)

sometimes we deny what is presented to us even though it is vary thing we are seeking.

if i’ve never seen a quarter, am familiar with dimes and nickels, and are presented with all three, i will reach for two dimes and one nickel to make 25 cents.

maybe i’ve never seen a quarter.

to identify foreign forms of what we seek is to be curious. to be curious is to be open. to be open is to be unafraid.

the end.

and the world is so big

it’s my 100th post and i’m happy to have saved this until now….

i’ve been plugged in to the dexcom g4 for a week and a half.

look at all of this glorious data:
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i could pretend i wasn’t thrilled with the 144mg/dl average
i could say “i know i can do better”
and in fact, saying it would be really easy.

however, saying it would mean at least partially skipping out on the huge pat on the back i should be offering myself for going for the dexcom to begin with.

i did it! and even though seeing the first up, up, and away arrows is a little like stepping on a scale after a big dinner, i find myself wanting to keep going.

i had a few ideas of why my a1c was 8.5, but no evidence to back it up.

now, i know.

and knowledge is power.

…..
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…note taken.

move onward, my friend, onward.