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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Who Is Included?

December 5, 2016

I can’t count the number of times the topic of who is and should be included in policy discussions and conferences comes up.  Just this week I encountered two examples where patients though ostensibly “included” were not included really at all.  Considering how long this has been an issue and how often it is discussed in patient communities, I am still disappointed that the discussion continues and inclusivity has not really expanded to mean all patients included.

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To Be Critical

September 30, 2016

To be critical is often seen as a negative attribute in our society.

Unless, you are being a critical thinker or giving a critical analysis in academia.  Then the being critical may be praised.

When we use critical to describe something other than a person however, when something is critical we know that it is of utmost importance – whether it be a critical idea that one hopes to get across or a sign of impending disaster.  Critical then marks a kind of apex – a point from which much could change going forward.

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Is this how you will teach our future doctors?

June 6, 2016

Dear Doctors,

I am rather disappointed to receive your letter requesting that I select another physician dated June 3, 2016. (see below)

I sent a letter to all of my providers, carefully choosing my words so as not to offend and to encourage my providers to work with me and with each other to provide better care. Unfortunately that letter was met with defensiveness. Providers bucked at the idea that a patient could be so empowered and engaged as to write a letter questioning the system, find a way to communicate with her providers in an unconventional and yet legally approved manner (i.e. via email), and request boldly to move forward in care.

I stood firmly as administration and other providers seemed condescending, yet I was willing to move forward. I was frank when your and other offices refused to comply with the provisions of the Health Information Privacy and Accountability Act. And in return, you have dismissed me.

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To All My Providers

May 13, 2016

Recently I have written a lot of long missives to separate providers and the administration of the health center where they practice regarding everything from emails to insurance coverage to health issues to theories of patient engagement and care. For weeks I’ve been debating whether to simultaneously email my entire care team and tonight felt that I was ready to do so.

This is a message to all my providers:

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What It’s Like

May 11, 2016

The following is a companion post to A Brief Tantrum with the theme of what it’s like to live the #CronicLife (but with no swearing this time).

I was trying to explain what it’s like to be me to my therapist when saying that I wish my providers would go the extra mile. I’ve been accused of having high expectations. I think the truth is I settle for low expectations but am angry because I know they can do more. I don’t expect anything that I believe someone isn’t able to attain. I have high expectations because I know they can be met. But again, I settle for far less than that. That’s all I get.

I’m just the bad guy for wanting more than they think they can give. They can’t see what it’s like for me though.

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The Real Access Issues

May 6, 2016

Recently, the diabetes online community has been in a bit of an uproar over United Healthcare’s decision to name the Medtronic insulin pump as the preferred pump for all on its plan.  #MyPumpMyChoice and #DiabetesAccessMatters are added to every tweet on the issue as people debate choice in health care, health care costs, and access to healthcare in general (though mostly around tech – i.e. insulin pumps).

For some time now I have been rather frustrated with the larger issues of access, the ones that don’t get talked about as much and don’t have popular hashtags, the ones that aren’t sexy but are often more critical.  And those include basics like access to dental care and eye care and mental health care – (and I know this will piss many off) but what I think are the real access issues.

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