Monday, February 22, 2016

Jacob's Song of the Day (2/22/2016): "Stressed Out" by Twenty-One Pilots

The title says it all. Have a listen and read why I chose Stressed Out by Twenty-One Pilots as my song of the day:

"I wish we could turn back time/To the good ol' days..." . I need a good day. Desperately. I wish that they were for sale in the stores, because I'd be first in line. Since diagnosis of Crohn's Disease almost 4 years ago, I don't even remember what a good day is like. Normally I'm pretty good at taking it all one moment at a time, I've even accepted that I'm going to live with this disease and it's complications for the rest of my life. But for the past week, I've been feeling stressed out, for sure.

It started 2 weeks ago when my medical team decided that they needed to check my feeding tube for infection because of the blistering and rash that I was having. It came back that I was positive for "gram-positive cocci", or in terms that others understand, a bacterial infection. I took my antibiotics faithfully for 5 days, and it was looking better but not all the way better. So we had contacted the medical team and sent them pictures but they didn't feel that taking more cultures was necessary. Two days later, the rash came back worse than ever. We sent more pictures but the medical team felt that it wasn't an infection, but said that we should use Benadryl (which I'm allergic to) for the crazy itchiness that was now spreading across my Buddha-belly. Fast forward to the weekend and my entire belly is now covered with a raised rash and my feeding tube site is a complete mess.

For anyone, having an infection isn't nice. But when you are on a medication that can suppress your immune system and make it harder to fight infections, it can be a scary situation. I have a 5cm long tunnel leading into my stomach and an infection in there... just isn't a good idea. The medical team still doesn't think it looks infected, but they did agree to see me in person tomorrow to try to help me get some relief. Because in the end, that's all I want, some relief. A break in the clouds.

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