Visiting Urgent Care with Dysautonomia

Being sick sucks. It sucks more when you have dysautonomia.
Think back to the last time you went to urgent care (or Terem for my Israeli friends/family). It was probably a fairly easy visit. You probably explained your symptoms, told the doctor how awful you felt, maybe some tests were run to figure out what's going on, and then you were probably sent along your merry way.

When I go to urgent care, it's never really an easy visit.

First, I have to explain that I have an auto-immune disease that messes with the lining of my bladder. Then there's the ulcers in my bladder...and also the ones in my stomach. Next comes explaining dysautonomia. I usually get a blank stare from the doctor or NP and then I get to explain how all of it works and ties together.

Case-in-point: last week I went to urgent care for a UTI and a kidney infection. I explained that sometimes, with Interstitial Cystitis (the auto-immune disease that messes with my bladder lining), it mimics a bladder infection but I didn't think it was the case this time. And my kidney was hurting...and the doctor almost missed it if I hadn't reiterated it. Then I started explaining that I have dysautonomia and that messes with my whole body. So I was nauseated and in a lot of pain but that's also fairly normal for me.

I spent 20 minutes talking to this doctor before having to explain that I'm also antibiotic resistant thanks to having so many bladder issues as a kid. See kids, in the 80s, it was common to put children on a course of antibiotics for an entire year when they thought kids had chronic bladder infections. Urologists didn't seem to understand WHY kids, like me, got bladder infections so much so the best thing to do was prescribe medicine. By 35, there's a list of meds I can't take now because they won't work. Amoxicillin and Bactrim are two of them. Before being prescribed any medication, I always ask about the side effects because I'm not your normal patient - I'm prone to feeling like crap with medicine. So I like to know what I'm in for and I was told antibiotics are pretty much all the same when it comes to side effects: gastric pain, diarrhea, and nausea. Lies.

I was prescribed Cipro, which I've taken before but not since getting diagnosed with dysautonomia. Two days into it, I had to call the doctor again because my heart felt like it was going to explode and I couldn't stop sleeping...and vomiting. There was also joint pain and muscle weakness that made me feel like I had the flu but with no fever and no shot of feeling better. I was prescribed Keflex in place of Cipro and the main side effect, for me, is a headache. For two days I've had a headache - sometimes it's worse than others. The headache causes nausea, which causes me to not eat because I'm afraid it's going to make me throw up...which in turn makes me more nauseated.

This is what it's like battling what doctors call a "simple" UTI when you have dysautonomia. It's not so simple and infections like this can leave you debilitated for days. Sounds awesome, right?

The moral of the story, kids, is to appreciate your health. As you're giving your thanks on Thursday, don't forget to be grateful for your health because not all of us are so lucky to bounce back from "simple" infections.


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