it’s beginning to look a lot like…

Heather Gabel

like pain, it is
a feeling i forget between occurrences.

it is sweeping,
it takes me over entirely,
and i well up inside.

every so often, i feel a glimpse of what is to come
an acknowledgment of the fact that in my life i will ‘do something’
…something… remarkable.

in waves, it approaches.

and today,
i felt it.

i felt it when i wrote this paragraph….

in may of next year i will be on staff and facilitate discussions at the diabetes unconference, a new conference that focuses on the psychosocial impact of living with diabetes for people with diabetes. as a leader, i want to introduce an action-based component to the group, so that our efforts may translate into something that branches beyond the weekend-long conference.

and then again when i wrote this one….

i plan to study participatory community research to design a patient engagement protocol. i see myself focusing on a program of research that examines the relationship between community involvement and health outcomes for patients in a particular health group. for example, i might investigate whether or not self-identified advocates tend to have higher rates of self-efficacy. i hope to learn how health communities are formed and the nature of their organic growth by understanding the advocates that lead them. i could also see myself focusing on how a community’s collective perception of their disease indicates or predicts their aptitude for creating and sustaining social change.

i am not sure at which institution i will study, but i know that wherever it is, i will be in the right place.

i am meant to do this.
i can feel it.

and the love for what you hide

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benign.
a word you hope to only use in benign situations,
also known as the situations that are figurative in nature,
or ones that are devoid of the possibility of cancer.
it’s nothing.

nearly three months ago, i felt a lump in my breast.
it began with 30 days of ‘it will probably go away’ and ‘it’s fine’
but when it didn’t and it wasn’t, my mind channeled catastrophe mode.

i finally worked up the courage to tell just one person.
feeling a change was just a feeling
it wasn’t quite real until, i shared
jesse. my betrothed.
‘feel this’ i urged.
it will be difficult to forget the look of concern on his face,
the stern tone of his voice, the seriousness.
regardless though,
don’t worry.
stay calm.
it’s nothing.

the twenty-four hours between sharing and seeing a doctor were excruciating. jesse was as supportive as he could be, but there was something missing from his care… he wasn’t a woman.

i needed to tell a woman that wasn’t my mother, i needed to take off my strong face and be scared. lumps aren’t diabetes. cancer isn’t diabetes. other sicknesses aren’t diabetes, but i couldn’t imagine anyone better to call than a trusted friend in the diabetes community.

and i had to, i couldn’t do this alone. my fear was too big and growing.

i reached out and open caring arms greeted me.

in retrospect, i feel very lucky to have been seen so quickly.

my lady doctor checked me out the next day and made a joke about co-morbidity (which i am afflicted with) that made me really laugh. she treated me with the perfect doses of funny and serious, offering the information i needed without any the doom and gloom i’d already been feeling.

a 5cm mass. moveable. the second part was good news.
i’d have preferred to not have the first at all (obvi), but, as it goes…

a history of breast cancer in the family was enough to get me seen by a radiologist promptly the following morning.

i called my mother right after the appointment with my strong face on. ‘it is likely nothing’ i paraphrased. the mammogram and ultrasound are ‘just in case’ things.

i was terrified. stuck in the swamp of memories from when i was eleven and just pre-diagnosis…

‘you’re probably losing weight because you are growing’
‘you probably have no energy because you aren’t eating enough’
‘the weight loss might be explained by an eating disorder’
‘fatigue is normal at this age’

but that time…
it was something
and living through misdiagnosis after misdiagnosis left me skeptical of disease identification in unlikely individuals.

i went in to the mammogram with the mantra, ‘even if it’s something, it’s okay.’

guess what?

it.
was.
nothing.

the radiologist didn’t even feel a need to see me, just gave me the green light to go home.

i never heard the word benign, because it couldn’t possibly be anything else.

‘benign’ was irrelevant.

i should have been thrilled.

but,
i walked out, unsatisfied
unbelieving
wanting a second opinion.

i haven’t gotten one yet, and the mass is still here.
hanging out.
taking up residence in a place it barely fits.
begging for attention by lumping around.

i catch myself feeling for it every morning and afternoon and night,
hoping tirelessly that this time is will just. be. gone.

i’m still terrified,
still untrusting of the very medical system that prescribes me the medicine i need to survive.
i’m still having my friends feel it, so that they know what to look for when the self-inspect.
i’m beginning to understand the importance of checking myself regularly.
this.shit.is.scary.

BUT, this video makes it better.

thank you renza, for bravely writing about this tough subject and helping me find the courage to share my own experience.

if you find something when you self-check, you are bound to experience a slue of feelings and overwhelmed and terror will be two of them. my advice to you, is TELL SOMEONE YOU TRUST. doing that alone is exhausting and horrible and you deserve support. go get some. right now.

as a final note,

to the man at the bar who said, “breast cancer is barely a threat anymore, it is basically like a free boob job,’ i say to you…

‘thanks for the generous tip, but you’re an asshole. now, get the hell out of my bar.’

two-a.m. summer night

pinterest me a story
cut out of humble brag postcards wishing you were here
no need for color
i’ll believe your tale without it

weave into it makers and takers
lies and the kind of motivational quotes
that make you think rather than smile
do more
be better
if i can, so can you

bravery is not the fools game
but he plays it better
than i

embrioder it with triangles and tree branches
stick to the thin variety
uniform will be imperative once more

lace it with misunderstanding
and ridicule
thick bones aren’t born
their grown

sew up your story behind the heart of the doll
who will help untangle the hair
where i hear you hold your troubles

fashion a cover and
name it something obscure
like a lyric to a song that no one knows

maybe even one you wrote

pick a selling point and start there
fake it till you make it looks good on you

end it with something kindly mystical
wanting
baited
but lost

these nights never seem to go to plan

tiny boxes

i woke up with ketones and i’m feeling pretty shit-tastic.
right now.
every keyboard button i press takes a little more effort
every stroke requires a deliberate action
nothing comes natural
except to sit, uncomfortably, and stare at the television
while i pretend to pay attention.

this is only moderate,
it has been worse.
it has been worse.

having ketones is like the funk you can’t snap out of
when your friends try and make you laugh, you understand why their jokes are funny, but you just can’t seem to muster up the energy to lol.
even the smile you put on to thank them for trying comes with a sting

i wanted to share this as it is happening because if i wait until tomorrow when the ketones are gone, there will be a tone of ‘i’m fine now and from this i learned x’

i have written that post before. it was more clear, more articulate, more clever.

here is the truth. i know why i have ketones and i am aware that it is completely my fault. i should have planned better. i should have been more pro-active. i should have changed my site before i went to bed because i KNEW i would run out if i didn’t. i knew.

should, could, might next time.

have you ever treated your pump alerts like a snooze button? five hours without insulin. ick. sick. why did i do it?

well, here is a post without an ending, without a resolution. there is no moral to the story, no assurance that this will be a learning experience.

this is a post in real time, on a bad diabetes day. a bad diabetes day filled with half-thoughts and a boat-load of insulin.

oh, by the way… happy halloween.

ground control to major tom

tattoos

ever come face to face with someone harboring a radically different perspective on diabetes?
one that doesn’t jive with yours?
one that you wish you didn’t still hear?
one that takes just a little something from you?
one that hurts your heart and reminds you of how much work there is still to do?

ever meet that person and find out that they host this damaging concept of diabetes even though they-themselves- are a PWD?

i work at a bar. i tend that bar. my uniform for work is a tank-top and shorts. with my diabetes alert tattoos always on display and questions constantly forthcoming, i am finding myself slightly fatigued. i remind myself of the fact that i got these tattoos hoping they would serve as a conversation starter, and thus as a mechanism of diabetes advocacy and education. i got exactly what i wanted from this.

what i did not expect was to be overwhelmed by the lack of knowledge rather than the warm fuzzes from doing the explaining and the desensitization and the re-defining.

having the tattoos is an invitation for questions…
questions i wish i didn’t need to be asked. like, ‘do you have diabetes?’
or ‘were you born with it’

it is so easy to forget how completely uncommon it is to know anything about diabetes before it touches your life.

i did forget.
tending bar reminded me.

week before last, i came face to face with another PWD who had radically differing opinions of diabetes than i.

it was one of the most difficult conversations i’ve had about diabetes to date.

he came in around 4, right after opening. nice guy. had about 2.5 pints before we got along to talking about it. he told me that he was considering a pump. asked me about my experience with it.

i told him it saved my life and even though it does come along with some little nasties-like having to sleep with it and bathe with it and swim with it- it is worth it. to me.

around that time when everything was still fine and dandy, another patron sat beside PWD patron and jumped in to share that he knows nothing about diabetes. there was almost a smile on his face.

PWD patron interjects by beginning to aggressively- bordering violently- explain the difference between type 1 and type 2 and how people always tell him to watch his weight even though his weight has nothing to do with it because he is ‘a TYPE 1′.

i think i went red in the face.

i was there once. i was the PWD patron about three years ago, truly believing that i was educating my peers by drawing a harsh and finger pointing distinction between my obviously more challenging disease and the disease of someone who ‘did it to themselves’

it took the honesty and ball-busting nature of the diabetes online community to show me that my efforts to educate people about diabetes and to raise diabetes awareness in THIS way not only functioned to harass those people who live with type 2, but also worked to emphasize the stigma i thought i was fighting. i was making that stereotype stronger by setting myself so clearly apart from it.

i know this because i watched the non PWD patron react; a sense of enlightenment bestowed upon him. “oh there are two kinds of diabetes and you got the bad kind that no one deserves”

i must have been purple by this point. exploding with a sense of self-loathing for having had this conversation and felt fine about it, i got their attention with a slight huff and puff. they both looked to me and i said something along the lines of:

‘actually, scientists are now finding that diabetes is more of a spectrum disease. a person can be both types if they do not produce any insulin and are also insulin resistant. there are people who are middle-aged, eat perfectly, exercise everyday who are diagnosed with type two. children can be diagnosed with type two. no one is to blame for their body malfunctioning. no one caused their own suffering, and even if they did, who is helped by being told they are the reason they are sick’

i didn’t stop there.

i talked and talked until i was nearly in tears telling them that diabetes is severely misunderstood and misrepresented by the media, by healthcare professionals, family and friends, and even sometimes other people who have diabetes.

and then my fatigue turned into a war cry.

you can imagine, can’t you?

let’s sum it up and just say i needed a 15 minute break to compose and self-help. i did return to work with a smile on my face that day, but a smile masking embarrassment and an uneasiness to oblige the next asker of questions.

in retrospect, i see this as a learning experience for me. you know how you can plan to get more than you planned? this tattoo is giving me more than i planned to plan for. i’m a-growin’ for it.

eagerly awaiting the next trial…

move onward, my friend, onward.

and everything he sees is blue

BBT

big blue test time is one of my favorite times of the year.
an external reason to get my blood pumping and exercise.

today, i submitted two big blue tests and it wasn’t as challenging as i thought it would be. it wasn’t as grueling as i imagined. in fact, it felt really…good.

today i raised two dollars to help diabetes charities.

today, just by exercising, i did something for my community.

join me tomorrow?

if you still aren’t convinced, look at all these pictures that were taken during big blue test season last year and the year before. and then, if you still need a push – err i mean gentle nudge-, watch the video.

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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?