Journey To Now

I honestly forgot about this event until last night when I received a reminder email & updated agenda.  My local hospital was having a one-day symposium at a nearby campus & a few months ago had asked me to be part of a roundtable about lung transplant.   It finally hit me last night that we are at the end of the month.

Continue reading

Advertisements

Draft of FDA Testimony

Representing the TS Alliance & The LAM Foundation both when it counts in research & behind the scenes has been something I have championed for a very long time as my health has allowed.

Continue reading

Rant: Can We Just Fast Forward Past Next Week?

I won’t discuss politics here because quite honestly I can’t stand the trolling this cycle. I don’t want trolls of any ilk invading my blog.

I thought the last two cycles were bad, but it seemingly gets worse & worse.

Continue reading

TOUGH CALLS: In the Workplace – To Disclose Or Not To Disclose A Disability?

This is an issue I continue to struggle with even having discourse about.  How much of my reality/health status do I discuss with my employer & or colleagues? Do I disclose anything & when? If I’m looking for a job when do I bring the subject up?  I came across this article. That’s what triggered these thoughts; even now, when I’m not working, because I remember those days all too well.  They weren’t that long ago.

Continue reading

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.

Continue reading

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.

Continue reading

Empowerment When It Counts

Today is a day where I woke up not feeling well. My energy was off.  But yet, I still got up & did something with my morning. As Ronda Rousey says, “I’m not a DNB (Do Nothing Bitch)!” I think I need to buy one of her shirts & wear it for inspiration on days like today. (Though I admit, my interpretation of being a DNB might differ from others. I’m totally picking up what Ronda’s putting down with it at it’s core, however).

Continue reading