who are you, who? who? (who who), i really wanna know

Diabetes Blog Week 2013: Day 1.

self tattoo

every prescription and list of ‘until next visit action items’ provided by my endo has the subject line of: “heather gabel, uncontrolled type 1 diabetes.”

considering the fact that my lowest a1c since i was diagnosed, eleven years ago, was 7.8 (can you guess what i entered on my tudiabetes profile) i suppose that ‘uncontrolled’ is a fair assessment. and i suppose i deserve the slap in the face offered by the term, “uncontrolled.” in case you haven’t experienced being labeled by a doctor or had a nurse react terribly to a 260ish blood glucose like you are going to die, that IS what it feels like, a big ol’ slap in the face.

i try, i really do. everyday i try. more, i have given my present and future to serving the diabetes community. it’s everything i want to be doing with my life and more.

i have had the same endocrinologist since i moved away from home to start college. that was five years ago. i have wanted a new one since the second time i saw her.

why?

WELL: she is nice, but she looks at her computer, at my numbers, and makes her assessment of my person and capabilities based on that alone. i am not even certain that she would recognize me outside of the office.

i have been seeing her for five years!!

how is it possible that i have made NO CONNECTION to her?

she has had two children in the time i have been seeing her, and she has NEVER mentioned them. i only know because she was pregnant twice! it is as if our personal lives are not important in the office.

HIPPA? is that why?

maybe. if not, why is there no personalty exchange? no meaningful connection?

it’s not just her. when i go in there, i shut off too. it is so professional and business-y. i am so nervous and prepared to be scolded that i cower.

maybe, next time i go in to see her, i will march in there and tell her my story. I would start off by telling her this:

diabetes is this sacred thing, or event, rather, that changed the person i became. complete 360.

it is a huge part of my identity. … i know and am sensetive to the many PWD’s out there who say things like ‘i have diabetes, but it doesn’t own me, or define who i am, or keep me from being me’.

but diabetes IS built into my deepest intricacies. it is my greatest sorrow. my greatest strength. diabetes was my call to action. my source of isolation and then later, connection to community. i take from diabetes moments to laugh, cry, frown, smile, relax, barf, calculate, take responsibility, party, etc.

i am a PWD, I have diabetes, i am diabetic, i am a diabetic. i am chill with all levels of language.

i want my endo to know that i got ‘diabetic’ tattooed on my arm, as a move of self-empowerment, because before i accepted it into my identity that impulsive night, i wouldn’t let a soul get away with calling me ‘diabetic’.

i want her to know that i spend hours upon hours upon hours and more hours working out how diabetes affects my psyche, persona, and other inner-workings-stuff.

i want to tell her that i write a blog! that i work for the Diabetes Hands Foundation, and with UCSF on a study with teens with type 1! and that i started Beta Connect and insulliance and another mentoring program with JDRF that doesn’t have a name yet! I want her to know that i attend diabetes events more than every other weekend and that I say the word diabetes over 100 times every single day!

but most importantly, i want to tell her that i WANT my numbers to reflect my effort but for some reason that i haven’t figured out, they just dont.

i guess i never switched endo’s because i have always known that it isn’t just her. a new doc wouldn’t change my problem.

it is me. i walk in feeling inadequate. i act out inadequacy in person and behind the scenes. it must be apparent.

i feel like a fraud for doing so many diabetes things, while having never had an ‘adequate’ handle on it to begin with (physically anyway).

maybe i have not switched because the dynamic we have gives me an outlet of blame?

uhh, blogging makes the truth come out.

#DiabetesBlogWeek, you’ve got the magic.

maybe from and for an endo, i want care like a mullet… business in the front, party in the back.

let’s talk about numbers, but lets integrate and map the numbers to my journal, to my blog. guess what! the days i write are probably my best diabetes days. let’s talk about life and upcoming events in the community. let’s make eye contact at the diabetes events and recognize each other, say hello!

let’s accept that it is okay for me to be an active member of the community and not have it all worked out. let’s be a team.

let’s do this for real, with courage, teamwork, and intentionality.

i think i’m ready.

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this post was in response to this prompt:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

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interested in participating? you still can sign up! click the graphic below!

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8 thoughts on “who are you, who? who? (who who), i really wanna know

  1. Heather, I have yet to meet a PWD (or a diabetic or insulin junkie or whatever we call ourselves) that has it all together. You’re braver than most for admitting that you’re not, but if your endo doesn’t delve any deeper than calling you uncontrolled (and you know how I feel about that), then it’s time for a new endo. You. Deserve. A. New. Endo.
    Keep the fire going. It’s what keeps us alive.

  2. I agree that you need a new endo, Heather, if only to offer you a chance for a clean slate. The endo I saw from age 19-24 was not going to give me a fair shake when I wanted to change direction in my care. He was not going to accept me as a growing, changing adult. I was going to be the college student who forgot her insulin or ate what she wanted. I was a collection of “noncompliant” and mistakes and bad A1cs. Finding a new endo changed everything for me because it let me be someone else to someone else without that complicated history. I highly recommend it.

    This was a great post, as yours always are. Well done.

  3. For both comparing your desired care to “a mullet” and that you question that lack of “meaningful connection,” I love this post. So much. I hope you find an endo that fits your needs and gives you that meaningful connection. It sounds like something so small, but it can make a HUGE difference.

  4. I think the right endo can make a difference. They can give you the tools and resources to make certain things easier in managing diabetes. It’s not a quick fix or anything like that, but you should have someone who at least encourages you to do better. You might also want to consider working with a CDE. I’m a little biased but I have had the best luck working with them as opposed to working with an endo, just because they are usually more flexible with the amount of time you can spend with them. Just think about it. 🙂

  5. This is beautiful! It’s practically poetry. Just lovely writing and heartbreaking. Thank you for sharing. As you said, “uhh, blogging makes the truth come out.” I spew a bit on my blog too. Kindred spirits though I am a “type 3”

  6. Love this post! I feel just like you…not matter how hard I try, I still haven’t figured out how to get my numbers in control-it’s tough! And just like you, I stuck with the same endocrinologist for 5 years before changing but that was only because I moved. I’m still searching for a good endo but I’ve read that they are out there! “Care like a mullet” would be awesome!

  7. I relate so much to this post! I once saw the heading on my chart that said “uncontrolled” and it really affected me, and it still is. I was the same way, trying so hard, thinking about diabetes all the time, but still hovering around 8.0. I’m still struggling with this and I totally agree with and relate to everything you wrote in this post. I have an endo who is fine and very nice, but it’s all business and all about the numbers, nothing else. It’s so nice to see that I’m not alone. Thank you for sharing!

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