Dysautonomia, Crohn's, Mordor in a Cup
Hey all, I hope your holidays are going well. I know it’s been a while since I’ve given an update and, since some of you have been asking, here it is:
My Dysautonomia has been managed quite well in the last two months. I’m making a lot of progress with gaining back some of my pre-POTS strength. I’ve been able to exercise daily and have been using Wheel Leisure (aka my wheelchair) less and less. I attribute this to an awesome neurologist that specializes in Dysautonomia as well as a change in medication. Never underestimate the power of drugs, guys (that was a joke y’all, don’t kill me). Anywho, a couple of tilt table tests later, I’m actually looking at going down on the low dose steroid I’m taiking daily.
As per the Crohn’s…. drum roll please…. I’ve been taken off of my maintance medication, Pentasa. What does this mean, you ask? Well, it means 12 pills less per day, that’s what. I’ve done really well and have been maintaining clinical remission without medication. I never, NEVER, thought I would be able to say that.
The one major issue that is sticking around is extremely low potassium. I’ll spare you guys the details, but I was unable to digest potassium chloride tablets. To maintain a level of potassium that is not unhealthily low, I’ve had to start taking a liquid supplement, otherwise known as Mordor in a cup. But besides this hardly palatable and quite expensive problem, things are ok.
Here’s to good holidays filled with health, joy, and some yummy candy canes.