In Defense of Digital Health Devices

I am very pro-research on general principle. The exception lies with “studies” (like this example) which measure only specific short-term endpoints that are inherently hard to measure & quantify.

Things like clinical & economic benefit & those associated “outcomes”.

Everyone has a different definition of “success” in these cases.  Also just because it doesn’t show something concrete in dollars & cents or in data points doesn’t mean it doesn’t have value.

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Struck In The Face With Ableism

I want to thank David M. Perry for calling my attention to something distressing last night.  It both sickened & shocked me, but then really as much as it “ground my gears” also had me examining my own thoughts & attitudes towards the two rare diseases I’ve been living with for so long.

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Using Professional Skills To Fight Personal Bureaucratic Headaches

For those who weren’t already aware, I was hit head-on by another vehicle on October 8th & just arrived back home yesterday.  My blog archive details some of the unique challenges presented to my lungs as a result. (Though I know I am lucky to be alive & am; I’m also truly thankful I did not need vast surgeries or invasive treatments or sustain more serious injuries).  I arrived home yesterday finally clear of most pressing & concerning complications.  Getting my life back to normal was welcome, but inevitably it was also tempered with some headaches & hiccups…

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HOT BUTTON: Hero Worship, Inspiration Porn, Pedestal Propping, & Tokenism

I’m not going to dance around this subject any longer.  It’s something I’ve sat with & ruminated on for years. It has caused so much ambivalence & mixed emotion for me at points.  I preface this post with an important distinction from most sources of this “trend” or “problem”  I see circulating in media & cyberspace.  People are being sincere in their views in sharing why they view me as an inspiration. I see this because quite a few of them actually knew me before my illnesses were apparent (or as outwardly so) & also know me after.  (I know they see me, & all of me).   Others have known me since I was very young & grew up with me. Some of these people may have never even known (until my need for transplant) that I was struggling with two rare diseases for most of my life. They admire me for other things than my advocacy & fight.  So when they say I’m inspirational they don’t mean it in a placating or demeaning way. That is why, while I understand the backlash against inspiration porn, I focus on the intent of of the message from the person saying those words to me & our relationship to each other before I even begin to open my mouth…

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Worthwhile IndieGoGo for “Lungies”

I recently found a great Kickstarter project called Dr. Poket for medication management & I did this blog post about it.  But one of my support group friends/Gift of Life stay buddies posted about this IndieGoGo project the same day (on Facebook) I found this company. The company’s  product account also connected with me on Twitter that same morning.  I was very excited about this device too because one thing that will never go away for me – either now, or after my lung transplant – is the need to measure my lung function on a regular basis…

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“Drink From The Well of Your Self & Begin Again” – Charles Bukowski

For the past 8 years or so, I really have been wanting to write on a regular basis. Although, I’ve never felt right about rigidly disciplining myself to do so because when I have it comes off contrived.  Charles Bukowski did it on a regular basis through poetry, novels, & other works. It was more inspired than not (even he admits it).  But for me, it always just seemed to come when it felt like it; even when I would try otherwise to coax it out, until very recently. Feels like lately a day without blogging seems an incomplete day…

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The Beautiful Gift With an Ugly Price Tag

This article has been circulating around the web quite a bit. I’ve seen it shared on both Facebook & Twitter. For some, it’s mind-blowing; others not-so-much.  Money isn’t everything, but it can be influential. Yet it’s not all there is.

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