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Jealousy? 20 Aug 2013 | 07:57 pm

I believe it is the Buddhists that have the principle that suffering is caused by want.  And I have worked hard to shrink the part of my personality that wants things for purely selfish reasons.  I'm ...

The Relativity of Cystic Fibrosis 4 Aug 2013 | 09:43 am

Remember in high school watching the clock on the wall and it seemed like time absolutely stood still between 3:14 and 3:15?  I do.  But do you really want time to stand still?  Trying waiting for the...

A looming catch-22 23 Jul 2013 | 05:26 am

I've been thinking lately about Vertex Pharmaceuticals.  They've done such a great job so far creating CFTR correctors.  There's now a drug that for 4% of CF patients is one step away from a cure.  It...

Sweating 25 Jun 2013 | 05:50 am

I tackled the hardest hills first, figuring even if I had to turn around after a mile, I'd have made them two very good miles. Unfortuantely, I'd lingered indoors too long and a summer spot shower dr...

Remembering 26 May 2013 | 03:37 am

And yet, there were many moments in those two miles where I felt the joy of riding again.  And that's why I keep at it.  Because that's what riding is about: the joy of it.  I like remembering that I ...

Weariness 22 May 2013 | 03:40 am

I just want to get this off my chest:  I'm so very tired.  Bone tired.  Nothing seems to make that better anymore.  Getting more sleep temporarily gives me more staying power, but it takes less and le...

Anxiety 25 Apr 2013 | 05:03 am

I'm caught between many rocks and hard places.  My health is not good.  It's not going to get better before transplant.  I'm still working, but kind of need to stop.  And yet the idea of going on disa...

Dying is Expensive, part two 27 Jan 2013 | 10:13 pm

In my previous post, I talked of the costs of preparing to die, which in the long view are actually minimal up front.  A couple thousand dollars should net you the whole swatch of documents you need, ...

Dying is Expensive, part one 26 Jan 2013 | 06:20 am

Where there's a will, there's a way...to keep the gubmint from tekkin' all mah moneys. Well...maybe not all my moneys.  And I don't have much moneys to begin with.  But of the moneys I have, I wish m...

Getting Off Light 17 Dec 2012 | 06:54 am

I am friends with dozens of other patients, to greater or lesser degrees, and follow their stories closely.  Naturally, this leads to some comparison between my condition and theirs.  I'm only human a...

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