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’?

————————————————————-

for your listening pleasure:

how am i the lucky one?

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

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!

just around the river bend

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i’ve been hand-writing blog posts.
secrets abounding,
and projects evolving.

life secrets.
dream secrets.
all the secrets.

one of my best friends, mike lawson, told me about how easy it is to give up on an idea if you allow yourself to get credit for it too early into it’s development. he said, ‘as soon as i tell someone about it, i am way less likely to actually do it.’

when i have an idea, i (without hesitation), seek validation.
i want confirmation that the idea is solid before moving forward.

after all, who wants to put a TON of effort toward a no-good-stoopey-poopey idea?

BUT, what mike brought to my attention made me question what motivates project ideas that pop in the ol’ noggin. am i wanting to do it because of the recognition i will get for doing it? or am i driven by a hope to actually change something?

next time i feel compelled to share my recent idea (err, right now), i’ll hold back deny the confirmation and satisfaction that may have returned the idea had i shared.

holy smokies, does that even make sense?

if this idea comes closer to being actualized, i’ll have a thread of evidence and can continue testing my motivations by sharing at various stages of idea-development.

if you have ever brought an idea to fruition, when did you start sharing your progress and how do you think it effected the outcome of your idea?

move onward, my friend, onward

for your enjoyment:

bother me tomorrow, today, i’ll buy no sorrows

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when today rolls around each year, i wonder what i shall do, explore how i should feel.

still diabetic.

i sit here, on the day marking the start of my fourteenth year post diagnosis, and question…

should i feel:

thankful for the life i’ve sustained because of medication?

grateful to the scientists (banting) who made my continued life possible?

blue because an unexpected anniversary will forever be a part of my life?

aggravated at the part of my existence, needy and constant, that i cannot change?

appreciative for the gifts and skills i’ve acquired as a result of living with a chronic illness?

pleased with my own resilience since the ever-recycling adversity invited itself to my forever?

frightened to not know how many more diagnosis anniversaries i will see?

morbid because i still consider not having kids in fear of dying and leaving them motherless?

proud of the inner work i have done to build the relationship i have with my disease?
but also terrified that i haven’t gotten far enough?

indebted to the community that has taken me in, offered understanding and care?

wishful that advances in technology will lessen the burden my condition has on my life?

relived because it could be a lot worse?

loving towards the family and friends who have made it feel more okay?

happy to have met friends online who i can support and who support me?

when i sit down and break down how i feel on this day every year, i learn that one sentiment doesn’t cover the bases.

my relationship to diabetes is muddy and convoluted and complex.

‘still diabetic’ is loaded.
it’s messy and, well, that’s the way (uh huh – uh huh) i like it.

—-

it is real.

today, of all the days of the year, i feel the most human.

today is my diaversary, and i’m happy to be here writing this blog post.

—-

for your viewing pleasure:

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.