I had a urodynamics study this month and the results concluded that I have a neurogenic bladder. Vesical sphincter dyssynergia, they call it. Next week I will be learning to self-catheterize which I think will be great because I won't have to run to the emergency room anymore when I'm in retention.
Here comes the whiny part:
- My worst symptoms these days have included my usual muscle weakness, but also a ton of muscle twitching that is quite a nuisance! These twitches are visible to the eye and happen mostly in my butt, my back, and the backs of my arms and legs.
- I seem to be in a bit of a nerve pain flare. My nerve pain has always consisted of patches of skin feeling like they're burning, but they used to come occasionally at night when I'd go to bed, and now they're happening all the time.
- Along with my usual tremor, my limbs have been involuntarily jerking. Sometimes causing my brand new phone to go flying. More often though the jerks are smaller. This is actually something one of my doctors noticed before I did, and of course now I notice it all the time.
- I've had trouble chewing for the past 8 months, but it seems to be getting worse. Things that are hardest to chew for me are burgers, lettuce and candy of course, and when I'm having trouble chewing, food often falls out of my mouth and my mouth feels numb :/ It reminds me of my almost 90 year old grandfather eating. Problems swallowing have also been progressing, and I'm grateful that I can still swallow and some things just get stuck in my throat and it's hard to initiate the swallow.
Some good things are also happening lately! I was asked to write my story for Beyond Type 1 which is a global community for Type 1s. In their words... "Our goal is to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way". Nick Jonas is a co-founder of this amazing project and my mom and I absolutely love it, so this was pretty exciting for us!
And that's life lately. Thanks for reading if you did! Maybe things will finally look up from here.