I posted this to another social account. But I felt it was worth sharing here:
I’ve made a tough call. I’m not abandoning my play, just setting it aside for now.
A few months ago, my numbers were unexplainably down about 30 perecent.
After some steroid pushes & medication changes, things were still looking a bit funky & my numbers still hadn’t risen, so I needed another bronchoscopy (scope of my lungs).
I had to start using an Accu-chek meter, since I lost the headphone jack when I upgraded my iphone (for free) recently.
My Dario meter, which I loved, couldn’t be guaranteed accurate with using the new Apple dongle/adapter.
They are working on a compatible replacement part but it still has to go through FDA approval so who knows how long that will take.
I had always wanted to try PillPack, but wasn’t sure that my insurance would allow me to use them. They say they accept Aetna, but then I also have to wait in the mail for my meds to arrive, which I’m not always willing to do if I’m running low or they’re expensive.
I think I found a do-it-yourself alternative that I like. Even though it takes a little time to use, it’s actually not that bad.
So this is going to be short & sweet. I have been out of commission because I was home about 4 hours and my friend had to run me right back to another closer hospital on Sunday night. My oxygen levels were very unstable & my home concentrator wasn’t near enough support. This time I’m at a different hospital near my house; & getting much better care. Actually being listened to instead of being fought tooth & nail like the other hospital.