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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The Evolution of a Blog

June 7, 2017

I published my first post on March 24, 2011.  I wrote about Patient Centered Medical Homes and I thought I would write a professional blog about health as a human right – about law and policy and human rights.  I thought there would be some focus to it, but I quickly realized there couldn’t be.  That’s not who I am.

For those who read my blog, I ask one thing implicitly:

See the bigger picture. 

I haven’t stated that outright but as I’ve wound my way through various topics, becoming ever more personal, I hope that some might see that there is a bigger picture in all of it.  That it does all connect at some level.  There is an underlying theme, even if hard to see at times – one that is at its core, a reiteration that health is a human right.

It makes me laugh knowing that my most read post is The Cruelty of Restraints.  And my second most read post is Don’t Eat Armadillos.  Fewer topics could seem farther apart in the realm of health, health policy, health law, human rights, advocacy, etc.  But they both exist on this blog.

Over the years my posts have become ever more personal and they likely will continue to.  I do hope to address some of the wider issues as I started and as are peppered throughout.  But I’m no longer afraid to write my reality.  It’s not pretty or professional.  It may not be meaningful to many.  It may just be more noise on the vast internet.  It may just be my tiny voice and one day I’ll look back and be mortified at the musings of my younger self.   For now though I will continue to write in the hope that the words might connect with someone somewhere – however naïve that idea might be.

This blog has evolved and will continue to.  I cannot set boundaries on what it is or what it should be.  I hope you will accept it wherever it goes.


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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