“Support” Staff Blocking Care

I’ve had a few instances now where I’ve really lost patience with healthcare staff as of late.  As have other friends with their situations.  It’s a growing trend that needs to be addressed.  Some of these support staff are anything but.

Continue reading


Ableism in the Academy–It’s What’s For Breakfast

This was a thought provoking post. I realize that disabled identity is a complex issue within many communities & I had my own thoughts but the insights here are so powerful I felt this was worth a reblog. I believe the root cause here is as SK points out the assumption that physically challenged bodies are someone else’s issue. This long held belief also takes root in the complexities that many people who identity as having invisible disabilities also face. This post addresses academia, but I’ve felt many of these insights in other aspects of my life outside academia. But it’s a great springboard into many other conversations…Thank you Stephen Kuusisto for this post & your permission to reblog it. I’m happy to have connected with you on WP.

Planet of the Blind

Ableism is akin to racism or homophobia but with one difference: the assumption that physically challenged bodies are “someone else’s issue” remains largely unexamined outside academic or activist circles within disability communities.   

—Stephen Kuusisto, before his first cup of coffee

You can’t include the disabled in whatever is meant by “diversity” until the problem above is addressed. 

—Kuusisto after his second cup of coffee  

That the disabled belong in special offices, sequestered environments, is a a hangover from the 19th century. Just as people of color or women still experience cruel 19th century headaches, the disabled do also. The academy taught racial separation, “the White Man’s Burden”, eugenics, and promoted the medical and psychological inferiority of women and people of color throughout the 1800’s and long into the 20th. The hierarchies of post-secondary-education in the U.S. remain in an amnesiac state—you see, I’ve even chosen an…

View original post 279 more words

When Other Medical Teams Fail Their Transplant Patients

I haven’t posted a personal update in a minute.   Part of it is because I’m extremely worn & frustrated & I don’t want that to bleed out and be perceived as whiny.  I know it couldn’t be farther from the truth & it’s not, but still this is what my head tells me sometimes.

Even though I constantly tell other friends with transplants who feel similarly that they are doing anything but.

While rather lengthy this update encapsulates a few months of frustrating experiences which I felt important to share with others.

Continue reading

Review/Beta Testing: MySpiroo

I signed on to be a beta tester for this device a few weeks ago, maybe it’s a month or more now.  (Things have been kind of a whirlwind).  I was excited when I received the package with the Myspiroo because it’s a smart phone spirometer, which I have been hoping for even before I was transplanted.

Continue reading

It’s Been a Year…

Last night, I celebrated my one year transplant anniversary.  At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.

I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.

Continue reading