The Lost Years

June 7, 2017

17 years.  Nearly half my life spent in therapy.

20 years.  Because I should have been diagnosed 3 years earlier.

10 years.  Because that’s how long I went without the right diagnosis after starting therapy.

14 years.  Of the wrong medication.

Too many years lost.

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Diabetes and the Unexpected

May 16, 2017

I thought I’d take a crack at Diabetes Blog Week for the first time this year.  It’s a week where diabetics from around the world follow writing prompts (found here) to share their experiences living with diabetes.  The title for Monday was to write about Diabetes and the Unexpected, with the following prompt

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

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Narrative

March 19, 2017

This week, the current president released his budget plan which included deep cuts in many of the programs that make our country great and that keep people alive.  Programs from meals on wheels to the Environmental Protection Agency to the National Institutes for Health among many others are threatened under this budget proposal in a way and to an extent they haven’t been before.  In some ways this move is not surprising to me as it continues a deep narrative about a person’s value and worth, particularly when they have very little – or rather a person’s lack of worth.  A narrative that blames and shames individuals based on stigmatizing assumptions about who people are – particularly the assumption that when someone has little, when they are poor it is a character flaw, they are merely lazy or uneducated.

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Diabulimia Primer

March 3, 2017

This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.”  This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes.  I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.

I first developed it because no provider I knew understood the disorder.  So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight.  That only made things worse.

In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops.  The document cites research because I know doctors won’t accept my word for it.  And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.

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Stigmatized

December 14, 2016

I have the grand misfortune of having 3 of the most stigmatized diseases – type 1 diabetes, celiac disease, and borderline personality disorder – and I would like the public to stop making it worse.

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What do you want for the holidays?

December 9, 2016

I never really know what to say to people when they ask what I’m doing for the holidays.  I want to say – “I stopped celebrating holidays years ago when I realized they’d only bring pain.”  Too many years I was hurt.  This year too many are hurting.

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Don’t Tell Me What it Means to Be Tough

November 2, 2016

My friend Liza (@itsthebunk) wrote a fabulous response to this horrible ad by Ford for Breast Cancer Awareness Month.  Watch the video below and read her post here before continuing.

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