Off To the Races Tomorrow

November is already shaping up to be busy.  I have several doctor’s appointments, mainly for car accident follow-ups, Social Security Disability verification, but also a few transplant follow-up appointments.  At my next visit with the transplant center mid-month, I’ll actually be given a timeframe of how long they expect my wait will be.  From others I know in my center’s support group, the timing average is usually a month either side of what they say (so if they say 6 months, for example, it could be as little as 5 or as long as 7) but still highly accurate.  For my own sake, I’m hoping that is true in my case & I’m not the oddball…(been there, done that, not always fun.)

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Government Relations Needs In My Own Backyard: Action Alert for PA Friends

I know I have a little work to do very shortly.  It’s been a few years since I’ve been up to making the visits to D.C. to be out in front meeting with Representatives & Senators, showing them how medical research has had an impact on my life.  This was something I enjoyed but was fortunate enough to have good training on in to be an active & effective voice in one’s own government. I was mentored in this realm from the nonprofit I did this work on behalf of.  Yet no training is necessary….it is actually easier than most people realize once you start.

I see another opportunity here, in my own backyard, to do the same even if it’s just an email or perhaps trying to visit or call a few local offices…

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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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Crowdfunding Research: A New NonProfit Funding Vehicle?

I waited to comment on this campaign until after it was over.  I didn’t want it to color or cloud the novelty & I also wanted an honest evaluation of meeting the outlined expectations & goals.  The TS Alliance works very hard on creating new & innovative ways to fund research. I will always appreciate & champion that.   That said, I do think this is worthy of a larger discussion because certainly other organizations will see this & try & copy or put their own spin on it; which could raise some potential red flags. I’m not “picking on” the organization with these thoughts.  I’m playing devil’s advocate because I know other organizations are certain to see this. They’ll also want to try to replicate it for themselves (like any new idea). They may already be doing that & I’m just not aware of it.

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Back When…

After my red-tape runaround this morning (with trying to be released from the nursing home/rehab center), I did settle down but then couldn’t come up with much to write about. What I saw in my feeds were other bureaucratic & public policy & health nightmares & it pissed me off. I had my fill. I skimmed them, filed them in my head, maybe saved them for another day.  Luckily I was distracted by a call from one of my friends in New York I hadn’t heard from in awhile & that was just the reset & refocus I needed….

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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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Rebuttal: Why We Can Stop Government Funding Of Science: It Doesn’t Create Much Innovation/The Myth of Basic Science

Most of the time I pride myself on not having knee jerk reactions when I see things I don’t agree with. However, yesterday was different.  I couldn’t help but have an initial one to a particular tweet & the articles within it.  Yet, I knew that wasn’t the proper way to get my point across, so….here I am…working on a formal rebuttal just for a weekend kick & change of pace.  Tangible, yet endeavoring to set my own emotion aside until the final strike about what triggered such a reaction.

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Food For Thought: Everything Doesn’t Happen For A Reason: An Examination

Some of the best exchanges I’ve had lately have come from impromptu comments during tweetchats or interesting Facebook shares. This also in combination of following other bloggers while I’ve been in this rehab facility recouping. Admittedly, I’ve been spending way more time online than I have been normally, but only by temporary default. This is due to various factors. Mostly health & logistics related. Also as I continue to bounce back, a degree of restlessness. This is ok though. Once my visitors slowed down because I was through the worst of the post-accident complications & pain; I’ve just been diving in as I can exploring, observing, listening to the chatter (outside this place) going on in the world.  I don’t think it is a bad way to pass the time.

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Don’t Wait For A Time of Need To Know What You Need

This recent NY  Times article really had me thinking, not only because of what I have faced in my past, but also due to what is front of me…but it isn’t only me who should be taking a hard look at this.

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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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