Today I had another slew of appointments, one of them being with my urologist at Duke South. It was a pretty uneventful appointment, but I am incredibly frustrated with the state of my urological health…
I have my THIRD infection in two months! The first two were complicated infections with uncommon strains of bacteria, and they really kicked my butt. This most recent culture grew Klebsiella pneumoniae which is a pretty common culprit of UTIs…but it is a difficult bacteria to get rid of nonetheless.
I honestly do not remember what it feels like to not have a UTI! My bladder and kidneys are constantly hurting, with pain ranging from slight soreness to knock-you-to-the-floor sharpness.
My urologist reassured me today that I am doing nothing wrong to cause these problems.
These infections are a result of EDS causing my bladder to be ‘too stretchy’ and dysautonomia affecting nerve signals to my smooth muscles. She also said that prednisone is likely complicating things as it is an immunosuppressant.
As far as managing my condition(s) goes (in this case, taking prophylactic antibiotics and self-cathing), I am doing everything right. I suppose knowing that makes me feel a little better…but in a way, the fact that this is not my fault increases my frustration because there isn’t anything I can do to improve the situation… agh.
On a more positive note, appointments with mom are always an adventure! She’s truly a character, that one. Here’s a video of some post-appointment shenanigans with my partner in crime.. 🙂 Love this crazy woman so much! ❤
May is Ehlers-Danlos Syndromes Awareness Month! I plan to put together an awareness video eventually…but in the meantime, here’s a sneak peak at some weird EDS hand movements. Notice how my hand almost looks like it’s turned inside out? That ‘flying swan’ hand position is like our EDS gang sign.. 😉
Happy 24th to my amazing best friend, Hillary! I love you today & every day & I will ALWAYS stand by you… ❤
Thanks to the amazing Michaela Shelley for yet another great Feeding Tube Awareness Week video this year!
Throwback to when I found my duck Terd Jr. in the toilet.
He & Squirt were in their cage in the bathroom because maintenance was coming soon to do a carpet inspection. (Yes, I was indeed hiding two ducks in my apartment– that is beside the point.)
I still vividly remember hearing a loud splashing noise & running in to find…well…this.
Don’t let his little face fool you: he was not deprived! I gave him baths & let him swim all the time. But he had a condition called Angel Wing which meant I had to wrap his wing & he couldn’t get it wet for a few days. I suppose this was his form of rebellion & teenage angst. Stinker.. 😉
And this, my friends, is why we cannot have nice things…
Happy Gastroparesis Awareness Month, everyone!
(Link restored as of 4/2/17) 🙂
Haha, oh my. Throwback to September of 2015! This is just me being ridiculous. But watching this video today, all I can think is wow, I’ve gained so much weight! Definitely look a lot healthier now. Thank you, feeding tube!
A sweet spoonie sister, Michaela, made this awesome video for Feeding Tube Awareness Week! This is my fight song.. 🙂