Article: When You Treat A Rare Patient Like A Common One – Bad Things Happen

I came across this article in Rare Disease Report & it did send chills through my body.

Although, it did not completely surprise me (as horrible as that sounds).

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Review: Pill Drill

It’s been a moment since I’ve done a review.  This is partially due to not receiving some of the things I’ve backed just yet.

Still, I came across something fascinating & that I was lucky enough to receive a discount on the package in exchange for doing some user testing  & exchanging feedback.   I was so happy I did.

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No More Dual Listing…For Now

I had to cancel my appointment with Johns Hopkins because I was sick. I’ve been sick since about last Wednesday night, but went to the doctor Thursday.  I’m still recovering, but I knew even on Monday I wouldn’t feel up to going to Baltimore yesterday.

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REBLOG: When Delivery Is Not A Luxury

I think Esme has an excellent point with this blog post.

I am extremely fortunate in that I have lived with friends for several years & when I’ve been sick or not feeling well they’ve always been the first to pitch in to help.

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VIDEO: How The National Transplant Waiting List Works (From UNOS)

UNOS had this excellent video posted to their Facebook page last month.

I think it makes a very straightforward & practical explanation of the list & how it works in a way people can relate to.

I know I struggle to really boil it down to people in a way that’s easy to grasp, so I am so glad they posted this video to their social media page & hope they will add it sometime soon to their website.

(Photo credit:  UNOS Facebook page profile image)

REBLOG: Dear Pennsylvania Governor Tom Wolf, Can We Talk Medical Marijuana From A Chronically Ill Person’s Perspective?

This is still a hot topic. I know I discussed this awhile ago in a past post. I discussed it then more in the context of how I also have some friends here in the PA area that worked diligently for a few years to get the PA Bill passed.

That said, I think Brittney’s post (Brittany is one of my fellow bloggers from the Chronic Illness Blogger Network) is great & brings up additional food for thought.

I think she makes some excellent points.

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ALT SHIFT X: Lung Transplant Video

I really like this video.

It’s a good quick primer of a lung transplant.

It also talks about chronic rejection.    It does all of this in layman’s terms.

I think it helps those who may be supporting people going through a lung transplant understand this whole journey better without being too technical or with a slew of medical jargonese.

From Everyday Feminism: 6 Ways Your Social Justice Activism Might Be Ableist

One of my transplant friends had this article posted to her social media page.

I actually really like it & think it makes so much sense. It also explains the damage that ableism does in really succinct & practical ways.

It’s by no means a complete list, but certainly is a relatable one.

Definitely share-worthy.

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