So, I had an incredibly supportive visit with a urologist at MUSC a few days ago. I never regret the expense or struggle to get there, as it’s 2 1/2 hours away, but it definitely takes a toll on my body. This last visit caused a major PEM crash- I could barely get out of bed for about 36 hours. Today, I’m feeling much more like myself, but still going to attempt to keep things easy.
Urology update: The MUSC urologist had a totally different approach than I what I was coming up against with my previous urologist. He wants to investigate the problem with continued strichers (most likely caused by multiple foley catheters). He is recommending 3 different procedures including his own turn at a cystoscope under anesthesia. Scheduling them won’t be easy but hopefully it will be worth it.
In the meantime, I had an amazing nurse teach me, with extreme patience and cheerleading, how to properly self-cath. She allowed me to try multiple times and encouraged me along the way- such a difference than my previous teaching attempt. This allowed me to go home without a foley, which in turn helps with the intense bladder spasms I was having, never mind the chaos of running over my foley with my power wheelchair.
The process of self catheterizing is not easy. I spent so much time attempting this task, but finally feel like I’m getting the hang of it. The learning curve is huge- still trying not to make a mess of things and the biggest lesson is to simply relax and not to stress out about the process. I’m still working on the timing and how often to attempt, but feel like I found a solution to my urinary issues for now.
Still wondering how to handle being out and about and needing to self-cath, but that too will come with time. I want to attempt to do it over the toilet and not laying down like I have been. I just keep reminding myself to breathe, relax, and let things happen as they will. Stressing out only makes things more difficult.
I often joke that my medical journey is going to make a “nurse out of me.” Between self-administering iv’s, picc line management, injections, medication management, iv antibiotics, iv anti-virals, feeding tube, and now self-catheterization, I feel like this is a real possibility.
Update: I have definitely evolved from here. I am now able to self-cath “out in the wild” and over the toilet. It’s a huge relief that this journey won’t limit me. I continue to be Fiercely Independent!
