The Insulin Crisis in America

May 16, 2017

Diabetes Blog Week continues with the topic for Tuesday being The Cost of a Chronic Illness:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

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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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I Won’t Smile

April 24, 2017

“If you smile, I’ll send you to the dean’s office,” my high school philosophy teacher warned me.

It was an exercise, a test to see if I could go an entire day without smiling.

I failed and in front of my peers he picked a fight and sent me to the dean’s office.  A first (and last) for someone who prided themselves on being the perfect student.

And that moment forever changed my life.

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Net Neutrality and Healthcare

April 6, 2017

It seems to me that no one in the healthcare world and particular patient advocacy is paying attention to net neutrality. Perhaps this is because net neutrality is a newer concept and potentially confuses many. But, the future of net neutrality will have a significant impact on healthcare, particularly as we focus on digitalizing the industry – from apps to manage our health to medical records to simply being able to search for information on our conditions. Much like many were not paying attention to the implications of the recently signed into law provisions that allow our internet service providers to sell our data until it was passed, this is something we cannot let slip under the radar.

So here’s a brief primer on net neutrality basics, why it matters in healthcare, and actions currently being taken to end net neutrality.

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The Problem with Medicare QMB Administration

March 29, 2017

I find it ironic that before I became disabled, one of my last jobs was teaching social workers and doing outreach to the public about Medicare Savings Programs (MSPs) and now I rely on them.  If the government hadn’t funded a grant for me to do this outreach, I might never have known this program exists.  Problem is, most doctors, hospitals, politicians, and even the Medicaid offices that administer them don’t understand them at all which limits my access to care at times.  Not to mention, most don’t know that their low-income Medicare patients could qualify for them.

The Medicare Savings Programs are a great resource for those who are poor and need medical assistance.  The problem is, they shouldn’t be administered by the states through the state eligibility offices with Medicaid.  This current set up confuses providers, creates huge burdens on patients, and adds stress to an already broken system with subpar tools and resources.  But because it is administered along with Medicaid, as if it’s Medicaid, I’m subjected to this system, one that already already makes me feel like a burden, one that takes away my dignity as I try to simply get by.  And unfortunately, it’s never going to get better.

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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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