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?

until now

it has been about six weeks since the diabetes unconference happened.
i have held off from writing about it because even now, i’m not sure it is fully digested.
yes, it was amazing.
yes, the people who attended were inspiring.
yes, we covered a LOT of topics relating to diabetes.
yes, it should’ve lasted longer,
and yes, i would do it again 10,000 times.

i’ve read the attendee’s social media coverage, and my eyes well up with tears every. single. time.
mostly because i am proud of what we have done in and through the diabetes online community, but also because the whole weekend was wicked heavy.

we talked about mental health, burnout, social comparison, and other trigger topics.
the entire room (over 90 people) talked for two days,
bearing our souls,
open,
vulnerable,
messy,
loving, and
supportive.

i’m so proud of our group.

the unconference was a vehicle for us, and now
we have entered new territory as a patient group.

we made it happen.
it was organized by us.

do you know how stinkin’ cool that is?
unprecedented!
never before seen!

a conference created by and for advocates,
exclusive to and from people with diabetes.
our stories.
our expertise.
us.

i can’t wait to study this, guys.
i just can’t wait.

good news AND an ask

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have you ever felt an immediate need to share upon the receipt of good news?
you:
got a promotion, or
were selected to win an award, or
found out your blood work came back showcasing the rigor with which you tried to improve your health since your last visit to the doctor.

maybe you reached for your phone and sent a text to an upward of ten people exclaiming your success?
“i got the job!!!”, or
“i get to go to AADE this summer on scholarship!!!!”, or
“dude. my a1c was 7.3!!!!”.

when success finds us, or rather, when we find success, we want either to yodel it from a mountain (or proclaim it via blog post) or keep it all to ourselves. There is likely quite a bit of grey area, but let us ignore all of the in-betweens for now.

when i learned of my last two successes, my receipt-of-good-news reaction style changed.
my usual opera-sing-it-from-a-blog-post, text everyone ever approach didn’t feel right.
i wanted it to be mine.
i wanted to hold it,
understand it,
find internal validation first.

the wild part?
it worked. <– "duh. of course it did" (i can hear my friend caitlin saying now)

every day since march 13th, when i learned that i'd been accepted to university of illinois at chicago's rehabilitation sciences doctoral program, i've found multiple moments to burst out in laughter that i'm actually doing this.

consider this roundabout post my usual (albeit late) opera-sing-it-from-a-blog-post announcement, because change is hard.

in august, i’ll be beginning a career that will allow me to serve the diabetes community by studying us.
i’m not shitting you…
… at all.

i am going to spend the next six years of my life… studying us.

our community.

and what’s more… i’ll focus on what works.

what makes our online community so strong that an unconference to bring us together in person was created?
what does gathering online every week, or every day, do for patients long term?
does sharing personal experiences living with diabetes aid patients in any way?
what character traits motivate a patient to experience post-traumatic growth (PTG) post-diagnosis and
how do PTG-advocates influence the community’s organic growth, online and off?

in august, i’ll be crafting a master’s equivalent project.

and i will need your help.

what do you want to know about us
and what do you suspect i will find?

i am going to be a researcher whose study participants are also co-designers.
i have only one voice and though i will read and infer what you might be curious about by reading your tweets and blog posts, i can only do so with my own same ol’ lens.

i need your direct perspective, and
i need your faith.

i would not have been admitted to this program without the diabetes online community, without you, and that is not a hyperbolic statement.

it is no platitude, nor nicety. i’m not writing this to tickle your fancy, nor to give you that warm fuzzy feeling inside.

your existence and congregation online is the reason for my accomplishment.
really.
seriously.
no joke.
sincerely.

so, beautiful DOCers, what do you want to know about our collective?
what do you want to discover?
what do you want to prove?
how might i best serve our cause?

happiness is a warm gun

jesse walker

jesse (pictured above) just leaned over from his desk,
parting from his lecture slide review,
to ask,
how do you respond to, ‘uncontrolled diabetic.’

with a bug-eyed expression, i replied, ‘not well at all.’

he went on to explain that in his class, the phrase is everywhere.
he has been by my side long enough to know how regressive the terms non-compliant, non-adhearence, and uncontrolled can be.

he asked for an alternative.
jesse didn’t want to go back to his professors to simply inform and complain, he wanted to be armed with a solution.
so happy i’m marrying him.

i came up with the following list:

1. temperamental
2. erratic
3. aberrant
and of course
4. crotchety

i’m not sure which jesse will choose, but we both know that any of the terms above are better alternatives to “uncontrolled diabetic.”

here is why:

uncontrolled diabetic‘ is offensive and hinders motivation. hello self-fulfilling prophecy…

uncontrolled addresses the effort put forth by the patient. that is, the word speaks directly to the person, not the disease. uncontrolled followed by diabetic implies that the lack of blood sugar stability is caused by the patient’s inability to or decision not to take care of their health. it spits out blame and encourages the patient to internalize the problem.

why are temperamental, erratic, aberrant, and crotchety, better terms?

they all take the blame from the patient and externalize it to the disease itself. the diabetes is temperamental and hard to deal with. the diabetes is erratic. the diabetes is a grumpy, old, crotchety poo-poo head that doesn’t keep his word. it isn’t the patient’s effort being called into question.

it is the diabetes.
it is the disease.
not me.

this may not be the case for every patient, but i am motivated only when diabetes remains something external.

ALSO: how hilarious would it be to read HEATHER GABEL – CROTCHETY DIABETES on a lab slip?

do you have any other suggestions for jesse?
what might he, a current med-student, suggest to his professors and peers as a replacement for the too-frequently abused phrase ‘uncontrolled diabetic’?

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for your listening pleasure: