Spoonie Party!

I had the BEST time with these lovely ladies today!  I cannot even begin to express how needed this get-together was…not just for me, but for all of us.  Spending time with people who truly get it– talking, laughing, commiserating, joking, and just BEING, no strings attached– is truly the best medicine.  No one flinched when someone whipped out a nebulizer or strapped on a neck brace or flushed their port or tripped over their tubing. Laughing, we raced up to help each other (usually just adding to the chaos…lol, but the thought was there).  It was the first time in a long time I felt genuinely happy.. ❤

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Urine-ologist With Mom

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.

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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! ❤