It’s Not Up To Those Who Are Hurting To Make YOU More Comfortable With THEIR Pain…

One of my volunteer friends died a few days ago.    A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.

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Important Article: Misinformation From Brain Death Stories Impacts Organ Donation.

This article may just be for journalism nerds like me…but I’m glad Donate Life California passed this along.

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Grief Landscapes Project

I’m going to let the power of this art project by Mindy Stricke speak for itself.

I know I talk quite a bit about grief, loss, death & dying here in my blog on occasion, but when you’re forced to confront your own mortality at an earlier age it becomes necessary to do so.

It doesn’t make it easy of course, but it’s an important conversation to have with oneself & others.   Continue reading


When Enough Is Enough

A fellow blogger tagged me in a tweet today.  I know this was an invitation to read through or comment.  I’ve played around with writing about this subject a few times. It always feels a bit too uncomfortable to express openly like this, but I’ll give it a try. It doesn’t bother me to discuss it with others in hard situations & quiet rooms when needed.  (I hope this doesn’t come across as rambling. It is long. But to me every word is here for a reason.)

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When & How Do Recipients Say Goodbye To Their “Original” Organ(s)? Do They?

I do have a question I’d like to pose to some of my transplant friends, of whatever organ or whatever status.  I know that many transplant recipients feel compelled to write their donor families, yet how many have felt the urge to write a farewell note to their original organ(s)?

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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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When Generals Fall

I admit, there’s times I try to avoid getting too personal with this blog. But in the realm of rare disease, sometimes that line can be difficult to draw. Especially when one of your rare diseases is estimated at having a population of less than 350,000 worldwide & is predominately female.  It’s estimated that our current online support group has a little over 800 women.  Despite generalizations that women can be catty, most of us in this group play in the sandbox pretty nicely.  Yet, it’s days like today that make it difficult to sleep.

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