This June marks a full decade with my feeding tube – or I guess feeding tubes since I am ~supposed~ to switch it out every 6-8 months. For those of you keeping score at home, that reality is more like a feeding tube swap every 12-16 months. I am shocked when I look back on...
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I don’t always blog on Saturday, but when I do it’s because I have something I need to get off my chest. This week, the CDC provided guidance to state and federal policymakers that fully vaccinated people (two weeks after their final shot) can do just about everything they did before the pandemic without needing...
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It’s been a while since I last blogged about my life. I suppose that’s the price I’m paying for oversubscribing to credits this academic year – a small silver lining of hybrid/remote school! My blogging hiatus led to missed commentary on a lifetime milestone. I turned 30 in April! I won’t lie, hitting 30 does...
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The answer: A LOT. I decided to do some very rough back-of-the-napkin math to understand spending in the CF space because occasionally I come across a strange fundraising appeal that solicits donations for cystic fibrosis research on the basis that the US government does not fund research efforts for the condition. If you run in...
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I disclose my cystic fibrosis every time I fly. Of course, I have not flown since COVID-19 shut down the world, so I guess it would make more sense to say that I used to disclose my cystic fibrosis every time I got on an airplane in the before times. I will continue to do...
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I got my second Moderna vaccine dose over the weekend, and finally after a long year I am breathing a sigh of relief. If my experience this past weekend is representative of the nation at large, the demand for vaccines is still quite high. The clinic was packed wall to wall with vaccine recipients and...
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This past Saturday I got the call saying I could come off a COVID-19 vaccine wait list if I hustled down to a local vaccine clinic. I had nothing else going on (read: I have had anything else going on since last March) so I hopped in the car to get my vaccine. It was...
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