she’s got high apple pie in the sky hopes

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i tend to have high hopes for conferences,
and i’m no statistician, but roughly 90% of the time, those high hopes are met or surpassed.

this week i’m in new orleans for #aade15 – american association of diabetes educators national conference 2015. my attendance here is all thanks to the diabetes hands foundation‘s diabetes advocates program. DHF offered fantastic scholarships for this summer’s conference line-up. if you missed some of the conferences and are looking for summary, don’t miss everybody talks – DHF’s brand new podcast covering topics related to diabetes. plus, the hosts are pretty baller.

i have been anxiously awaiting this week’s festivities as it will be my first time attending a conference as a graduate student.

[dusts off shoulder]

pride aside,
whether or not my role at #aade15 will change has been weighing heavily on my mind.

will my lens be different?
i’ve thus far attended conferences solely as a representative of diabetes hands foundation,
or as an individual patient advocate.
now, i’m looking for what metrics researchers are measuring, whether their studies are problem or emotion focused, and how well their findings translate into clinical practice.

should my lens be different?
am i a patient first and a researcher second while here,
or the other way around?
perhaps there is a way i can fuse both hats?

half professional, half lived-experience?

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if there is a way to fuse the two, i’ll find it this week.

here are some of the sessions i’ve got high apple pie in the sky hopes about:

Patient Advocacy Across the Ages: Navigating Diabetes Management Challenges at School, on the Job, and in Other Aspects of Daily Life

Thriving, Not Just Surviving: Empowering Patients with Type 1 Diabetes

Transitioning Ideas into Action: Applying Evidence Based Practice to Your Next Innovative Diabetes Project

’cause there’s a million things to be

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i can trace my passion for diabetes-related social advocacy back nearly a decade,
must have been 14-15 when i started writing out my diabetes story.
i needed people without diabetes to get it.
i needed someone who understood.
i attended a support group or two, but found them to be information overloads.
that, and i had trouble connecting. could have been age related, maybe i just wasn’t ready.

regardless, the longer i went without meeting someone who understood, the greater the fire burned in me to start something, something i wish i had as i grew to know my disease.

it took until my sophomore year of college to act on that growing flame,
but thanks to lillian, i did.

lillian and i met in a rather unconventional way.
i worked at smart alec’s as a cashier and lillian frequented the establishment with her friend francesca.
one day, lillian showed up to get salads with her mom.
i didn’t usually pry into the affairs of our regulars, but this time i asked,
“why the visit, mom?”

my memory may be tricking me, but i recall a rather sullen glance between lillian and her mom before the answer spilled out.

lillian had been diagnosed with diabetes.

i pulled my pump from my pocket and said, “me too.”

it was only a short time after that we started getting together.
we talked a lot about diabetes, we lamented and we laughed.
then, lillian and i dreamed up a brand new support group,

which we affectionately called:

Bay Area Diabetes Association of Students and Supporters.

why the long name?
well, because it is an acronym that spells out:
B.A.D.A.S.S.

our support group efforts only extended to flyer hanging.
but boy did we dream up all kinds of possibilities…
what if we could actually get a group of college age-students and dish about all things diabetes?
wouldn’t our lives be so much better if only we had a safe place to vent?

needless to say, B.A.D.A.S.S. wasn’t sustainable and fizzled out.
but my passion didn’t
and neither did lillian’s.

lillian and i met six years ago, haven’t seen each other in five,
and met up today.

yes, for the first time in five years, the only two members of B.A.D.A.S.S. reconvened.

it took no time to remember why lillian and i clicked back then.
she has this sense of social responsibility that moves her into action.
her ‘pipe dreams’ are grand and span years into the future.
she takes unsweetened iced tea at starbucks,
and examines the world around her through every lens possible.
she is considerate of individuals, institutions, and communities.
i admire her.
i look up to her.

and get this,
we barely talked about diabetes.
we didn’t gripe about the trials of life with chronic disease.
rather, we discussed our current situations, goals, and pipe dreams.

diabetes didn’t fit in.

it wasn’t the story;
we were,
and i liked that.

the content of our chosen lives felt bigger than the diseases that connected us in the first place.

it was a beautiful thing and i am missing lillian already <3

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a post-post shout out to bea sparks for her stunning comment:
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^ word.

what is mine, is yours

PostSecret

dear author of the above postsecret,

i’ve rewritten the first line of this letter so many times, this nothing of a sentence will simply have to do. hi. my name is heather and i have been living with diabetes for thirteen years; not sure how much time from diagnosis to now i have spent pretending i didn’t have this damned disease. diabetes is the pits and many blame us for it. nothing helps us try to self manage better than being told we deserve what we got, huh?-(insert aggressive wink to denote sarcasm here). living with diabetes can be soul sucking and when we pretend it isn’t, the soul-suckage seems to increase exponentially.

i’m not writing you this letter because i have seen the light and am on the other side of the invisibility cloak, because i’m not. in many ways i’m right in there with you. hiding. pretending. for now and perhaps the rest of my life i will experience health tribulations that lead me to mask diabetes, removing its face, voice, and presence completely. i might be an expert in pretending i have a better handle on my diabetes than i actually do.

when i read your secret, the first thing i wanted to do was reach out and hug you. mostly because i would want a hug myself, but also because hugs happen a lot here. here… in the diabetes online community – affectionately called the #doc. the DOC is where i found the courage to come out from under the diabetes invisibility cloak for the first time.

i’m guessing from your submission to postsecret, that you too find comfort in the anonymity of the internet. the web is loaded with opportunities to purge painfully repressed emotions. i’ve taken advantage of those resources before as well. i did reach a point, however, when purging wasn’t quite enough.

when i read your secret, the second thing i wanted to do was lead you to all of the beautiful people living with diabetes right here on the internet who have experienced life under the diabetes cloak. most of us here have gone through periods of hiding our diabetes from strangers, from our friends, and from ourselves. because of these people, who show humility and courage exactly like you did in that postsecret card, the diabetes that has been my tantalizing struggle transformed from a ‘mine’ to an ‘ours’.

so now, even when i’m nestled tightly under the diabetes cloak, i’m in there with company, with friends, with family.

i’m not writing this letter asking you stop pretending you don’t have diabetes.
i’m writing this letter asking you to give up on pretending alone.
look around you and find that the cloak is actually an expansive tent, filled with individuals under their own cloaks – feeling isolated, blamed, ashamed, burnt out.
let my friends be your friends
and allow diabetes to be more than just yours.

diabetes, dear author, is ours.
if we have to pretend, let us do it together.

hoping you find us near you,

Heather the diabetic.

diabetes blog week day 6: life-savers revisited

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did you ever keep a journal?
write a paper in high school or college?

have you ever left it long enough to semi-forget that you even wrote it to begin with?

if you have, how did you feel about the way a younger you reflected upon the world?

reading through some of my earliest posts on this blog… which mike lawson inspired me to create by the way… was a whole great big mess of emotion.

in part, i wondered how any one was ever able to comprehend my writing.
so jumpy and wordy and odd.
in… another part… i felt proud to have documented such detailed memories.

overall, my favorite post is one that i wrote two christmases ago, about an annual gift of candy that didn’t stop coming even after i was diagnosed with diabetes.

it meant a lot to me that my family didn’t let diabetes change tradition.

and even now when i read it, i get choked up with gratitude for my darling aunt donna.

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today’s topic:

Click for the Favorites and Motivations – Saturday 5/16 Link List.
If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)

diabetes blog week: day 3 (with puddles pity party)

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what do you want to get off your chest?
if given the opportunity, would you set free the bits that weigh on you?
what if you let a secret slip your lips but felt no liberation?

if your admission didn’t invite commentary, would you share then?

today’s clean it out topic was a bit unnerving for me.
i have many qualms with letting go of my treasured diabetes-related secrets.
after all, i’ve been keeping them to myself for as long as i can remember
and while some of them send fear-induced chills down my spine,
others keep me grounded and responsibly safe.

whelp. … [gulp].

i am so afraid.

i’m scared shit-less –> meaning: i’m so incredibly terrified that all the poo has already left my body in fright. yes. i’ve lost control of my bowls, not just my blood sugar. apologies for that image.

when i think about trying to conceive, i’m a mess.
a baby?
i can’t even keep my crotchety diabetes from being erratic.
how am i going to be blood-sugar stable enough to HOST another human in my body?
can you imagine the ‘be our guest’ song with broken plates an bent silverware dancing around?
that was an obscure reference…

and what about this….
the one where monica and chandler are looking for a viable sperm donor…

i feel threatened by the idea that, as the above video suggests, people with diabetes or a history of diabetes, are not valuable contributors to society and the gene pool.

when i think about my long-term future, i have a tendency to catastrophize:
i’ll die young.
complications will keep me bed-ridden.
i won’t have time to accomplish everything i want for myself and my family.

all of the things my parents feared upon learning i would live with diabetes and its complications for the rest of my life parade around in my mind. only, it is a sad parade where every one looks/feels terrible and the band is off key.

i don’t like writing about my diabetes-related fears, not because i want them to not exist, but because focusing on them, highlighting them, and making them a part of my written history polarizes me toward them.

i love positivity and how it makes me feel when i practice it. i want to feel THAT as much as i can, while also recognizing that it isn’t the whole story.

sometimes, i need a pity party. most of the time, i don’t want it any part of it.

and to end this horrific self-exposing blog post on a positive note, please watch my hero, puddles.

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other people are cleaning stuff out and i know you want to know what.

today’s topic:
Yesterday we kept stuff in, so today let’s clear stuff out. What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it? (Thank you Rick of RA Diabetes for this topic suggestion.)

diabetes blog week: day 2

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to be quite honest, i’m not keen on admitting this…

B….U….T….

what i choose not to share is often my pain.

i want to be strong.
for my family,
for my self,
for my future.

i share my trials when i’m past them.
i suppose i do not share while feeling hurt because i know i’m a mess and don’t have answers.
then, if i can manage my pain in the moment, i feel stronger.

boy oh boy. i know there are so many holes in that logic.

“but sharing when you’re in pain IS A STRENGTH!”
“holding in your emotions doesn’t make you strong!”
etc etc.

i know this and yet
my pattern perpetuates.

being on the healthy-happy side of the equation helps me admit to this.
i am flourishing right now.

if i were, rather, languishing, i might have told you that what i don’t share is: personal details of my everyday life.
which is true…..

i don’t like sharing day-to-day things that i find sort of… boring.

BUT, it is surface in comparison to this golden snitch of an admission.

i don’t tend to share what hurts me.

while healthy, it is easier to
remember that
strong is a state of being, not a character trait.
and states of being come and go.

the hurt-ness that i keep only for me could make someone else feeling a similar sadness feel less alone.
falls, scraped and bleeding knees, alligator tears are not signs of non-strength.
they are signs of processing and recovery.

i need to learn to redefine the word strength as i see fit, per situation.
i need to remember that some of my hero’s, like scott strange, are strong because they have an unassailable ability to courageously bear their true colors, good and bad.
honesty, without packaging, without fear of judgement.
i need to remember these people
during the hard times and think of their strength.

i hope that next time i’m on the other side of healthy-happy,
closer to sicky-saddnes, i might be able to draw upon this blog post
and dispute any cognition i hold that sharing when hurting is not an action of great strength and courage.

because it is.

you know what i love?

when a blog post ends up being a therapy session!

whabam!!

this is what others are keeping confidential.

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today’s topic:
Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)

i’ve got no strings to hold me back

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last week i announced my acceptance to graduate school.

still over the moon about getting to see diabetes through a research lens, i have created a website to begin my path toward a career in participatory community research.

so begins, the study of us.

so, remember the ask from that blog post? i ASKED you to lend me your voice.

that ask is very very real now, and i have a little over a month to collect your initial inquiries. other steps will follow, of course, but this is the launching pad.

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i am seeking individuals who have interacted in some way with the diabetes community. you do not have to be a person WITH diabetes to submit a question. type awesomes are welcome. industry peeps, pharma people, techies, are all welcome.

if there was anything you wish you knew about how the diabetes online community works,
what would it be?

here is an examples page where your fellow advocates’ submitted questions are shown. they are curious about the why, how, what, if, then, who, how long, and when revolving around the diabetes community.

maybe you have a similar (but slightly different) question.

i want to hear your take.

click here to learn more about the study of us

and here to submit a question.

#IWishPeopleKnewThatDiabetes…

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if you find yourself on twitter today, err i mean GO TO TWITTER DANGNIT
look out for the hashtag #IWishPeopleKnewThatDiabetes…
this spinoff from the trending #IWishMyTeacherKnew was thought up by
the wonderful diabetes community advocate, kelly kunik.

i’ll be all over twitter (and Facebook) (and instagram) sharing what i wish people knew about diabetes
and so should you
really.

this is an opportunity to share all the secrets. together.

tomorrow i will gather up some of my favorites and share them here.

Stephen Shaul wrote a handsome follow up to this, so I’m borrowing it. MAKE SURE TO FOLLOW THIS LINK AND READ HIS TAKES ON THE #!!! they’re awesome. for real.

Look for my takes on this below. Look for additional brain spewing and general thoughts on this meme throughout the day on all social media. And tonight’s DSMA chat is all about #IWishPeopleKnewThatDiabetes… the Good, the Bad, and the Ugly. Join us at 9:00 ET in the USA by following @DiabetesSocMed and the #DSMA and #IWishPeopleKnewThatDiabetes hashtags.

cheers to the #DOC and to kelly kunic for being the creator of a great community builder!

what do you wish people knew about diabetes?