#angiomyolipomas

Hi! Remember Me? I’m TSC!

I had another check up Thursday.  My lungs are still doing great,  but I wish I could say the same about my kidneys. I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant. (more…)

Bag of Mixed Blessings

So this article popped up in a few of my groups recently & on Facebook pages I follow (like The Lung Transplant Foundation‘s page).  I found this intriguing for a few reasons. (more…)

Niece Rosie’s Driving, Medication, Risks and Hope

Niece Rosie and Nephew Mark

Niece Rosie drives like a completely insane person. Thank God she drove because I could close my eyes when the fear hit, I can’t do that when the city driving makes me anxious and I’m the actual driver. But Ho-ly shit.

I’ve driven to Philadelphia often, but driving in the heart of the city always causes anxiety teetering on the edge of panic. I fear parking in the…

Better Living Through Chemistry

The Jersey shore Cape’s winds are finally showing themselves and their glory. They cut through your clothing as a sharp knife, leaving you feeling exposed. Ridiculous and unfashionable layering is the only way to keep from having a nipple or gonad freeze, snap off and roll around in some public area causing you to scramble around chasing it to keep from losing it. The wind is what gets us out…