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

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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

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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:

how am i the lucky one?

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monday mantra

i’ve written about waiting before.

like september 17th 2013, i am now waiting. the life-on-hold- kind of waiting.
i’ve even taken to scientific versions of self help books.

positivity by barbara fredrickson
authentic happiness by martin seligman
flourish by martin seligman
happier by tal ben-shahar

stuck in a waiting rut, however, what has calmed me the most was the post linked above.
this blog serves as a reminder of my strength in the past.

do you get problem amnesia?
i think i do.

i forget that i’ve already felt the struggle i’m currently experiencing.
it FEELS so new, so raw, so real.
like i’ve never felt it before.

but this post is proof i have.
and this post is further evidence that i will be okay.
thriving, in fact.

writing this blog, as i have now come to find, serves my past, present, and future self.

when i get problem amnesia and feel lost in the struggle of X, i will come here.
i will reread how i got through it.
i will remember.

while i continue waiting, knowing well i’ll make it through just fine, answer me this:

what does/could blogging do for you?

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P.S. the title for this blog post brought to you by cold war kids (the best band there ever was ever):

our love saves lives

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rose

i love to love.
i feel good when i love, and i love accepting love.
AND i love that i love love.
so much love happening, someone get me a picture of a puppy.

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ahh, that’s better.

so, valentine’s day. the opportunity to show someone just HOW MUCH you love them.

how will you show your love this year?

chocolates?
flowers?
wine?
a sweet card?

if you are a person with diabetes, or if you love a person with diabetes, you may not go for the usual and tender gift of chocolates or wine. while people with diabetes can choose to indulge in sweets and boozy-time, providing the opportunity to indulge in other things may afford a better and more generous act of gratitude from your lover… and no, i am not referring to anything sexy sexy by that… get your mind out of the gutter!

so perhaps flowers or a sweet card?
give your lover both! or maybe only one with an extra special message.

here comes the heart-giving-lovey-dovey-great-googaley-moogaley sales pitch, one you simply can’t refuse…

this valentine’s day, give your lover the gift of saving a life. yes. you read that right.

spare a rose, save a child, is a campaign started by people just like you in the diabetes community who wanted to show their love in a more meaningful way.

here is the idea, instead of twelve roses, give eleven, and donate the price of the spared rose to life for a child.

life for a child, a program run by the international diabetes federation, GIVES children with diabetes in developing countries the INSULIN that they need to survive.

you spare a rose, a single rose (aprox. $5), and a child has insulin for a month. it’s true. it’s happening. you can literally SAVE A CHILD’S LIFE.

what is more romantic than that?
.
.
.
.
.
well
.
.
.
.

you can spare all twelve roses, donate, and save a child’s life for an entire year.

one rose, one month of life. a dozen roses, a year of life for a child with diabetes.

and you will still get the card.
when you donate, you will be given the opportunity to print the Spare a Rose, Save a Child card.

what would your lover love more than you saving a child’s life in their honor?

SHOW your lover that your love for them reaches children in need across the globe.
SHOW your lover that your love for them is LIFE itself.

Let your lover be the reason a child survived.

last year, our love saved 454 children for a year.
how many can our love save now?

spare a rose this valentine’s day.

also, yay puppies!