Author: Ashley

Happy Monday! So far no help from either Cedars or Advent Health. Brandon's still dealing with the side effects of months of high-dose prednisone and walking around with his IV pump. His potassium was abnormal from all the diuretics so they backed off those last week and so far he's tolerating the change without any fluid build-up. So there's that. GTM Reserve with these dudes This replica of the Santa Maria is available to tour in St Augustine through May 5th. In good news we had a lovely weekend together. I had to take a few days off for my…

Starting tomorrow it's back to the grindstone of medical mayhem. Brandon has to drive four hours roundtrip to Orlando both Monday and Tuesday for his 2-hour photophoresis treatments and a meeting with one of his plethora of doctors. But this weekend we got to spend some voluntary time in Orlando, which was a nice change. Evel Brandnievel We spent last night at Gilt nightclub ( http://giltnightclub.com/ ) dancing to DJ Malaa. This (late) morning we did a Waffle House-fueled 15 miles on the Seminole-Wekiva trail, enjoying shade, a cool breeze, and some sweet trail art ( https://www.floridarambler.com/florida-bike-hike-trails/seminole-wekiva-trail/ ). Brandon did…

Ashley here – Long time brokenbeatblog reader, first time guest poster. So Brandon can’t swim because he can’t get the IV pump or the line that runs into his chest below his right collarbone wet, and he can’t run because his heart function is still crappy. But today he did strap on his sweet pump-containing fanny pack and hit the road for a 14 mile bike ride. It was sunny and beautiful and perfect. And we saw a snake. So a good day for all.  I think Brandon does a good job on this blog of sharing the severity of…