Dealing With Doctor's Office Let Downs

From the well regarded specialist who's never heard of your condition, to the primary doctor who thinks you're a hypochondriac, and even those that want to help but don't know how, most chronically ill patients have had their fair share of doctor's office let downs. We know them well, yet they never seem to get easier, and it can start to feel like a never ending cycle.

I had an appointment with my cardiologist today, my second appointment with her after I first met with her last month. My mom came along with me this time just like my dad had come with me on my first appointment. Thankfully today didn't bring another tilt table test as my last go 'round did, since we have no need for another so soon into treatment. The issue we faced today was the simple fact that with my stomach still rejecting everything it touches, I'm not maintaining the level of hydration I need to in order to ease the symptoms of my Dysautonomia. I'm going in this Friday for my first of 2 gastric emptying studies to test for gastroparesis and the severity of my stomach issues. However, since we're just beginning to examine what's going on with my stomach, it's too soon for my cardiologist to do much in the way of easing the POTS symptoms that my GI issues are exacerbating.

It's frustrating knowing that nearly everything regarding my health and my quality of life is on hold until we can figure out what's wrong with my stomach. Couple that with the reality of what we suspect is gastroparesis, a reality that is very few treatment options and a very low success rate with medication management once you get to where I am with symptoms, and it makes everything seem really pointless. It takes a lot to remind myself that if we can answer the question as to what's going on with my stomach, it will open up different paths towards treating my other issues.

While on a calendar this Friday doesn't look very far away, when you're two weeks in to not tolerating anything you put in your mouth, another 4 days is agonizing.

Once the GES confirms what we're 98% sure is gastroparesis, and shows the severity of my delayed gastric emptying, maybe it will make it easier to receive saline infusions for my dysautonomia, either at home or at an infusion center, instead of suffering and suffering until I have to go to the ER. Maybe the few motility medications out there coupled with anti nausea meds and diet changes will be enough, at least for a while. I'm holding out hope, but not too much at this point.