Once a month, I am forced to take a phone call from Nurse Not Helpful. She works for my insurance company and, although she won’t admit it, has been charged with the task of reducing my emergency room visits. Because money. My insurance company flagged me as a “frequent flyer” as if I enjoy paying for these visits more than they do.
With MCAS, ER visits are inevitable, because anaphylaxis is inevitable. Although I try my best to control my environment, my list of triggers is ever growing and I can’t control other people’s actions, like wearing perfume. My reactions typically start with hives or shortness of breath and progress to nausea and swelling. I race the reaction by drinking Benadryl and then struggle to hold it down like a bad shot of tequila. However, if I start vomiting and can’t keep my medicine down, I have to go to the ER for an IV. Or else I die.
Apparently, eight is the threshold number of ER visits my insurance company uses to flag policyholders as potential money wasters. Never mind the countless, expensive procedures I endured pre-diagnosis, including a repeat colonoscopy and unnecessary butt surgery. They denied my three appeals to go to Mayo in search of a diagnosis. Now that I have a diagnosis and need a specific treatment only provided in the ER, I am being investigated.
It started with a letter. “Dear Keeya, When you have a health condition, you may not always know how to get the care you need. That’s why we provide you with access to a registered nurse to help you navigate the sometimes complex world of health care. As a clinical advocate, I can help you: understand your condition; learn about treatment options and providers; and find resources in your community to help bridge any gaps.”
This triggered hives and the following thoughts:
- I know how to get the care I need – now. Where were you one year ago when I was seeking help?
- I have access to over a dozen registered nurses and doctors. I see them more often than my friends. In fact, my mom is a registered nurse.
- I am making an assumption here, but how are you going to help me understand a condition you’ve never heard of?
After trash-talking the letter with my therapist, I scheduled a one-hour phone call with my new “advocate”. This action was motivated by a small fear that if I don’t comply, there will be greater penalties in the future, and my propensity to argue when I know I’m right.
To be continued…