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. “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.
She earned the name Nurse Not Helpful within two calls.
Sure enough, she had never heard of MCAS. The first call consisted of over a hundred questions about my lifestyle – an attempt to identify anything that may have contributed to my expensive medical treatments, except the disease itself. I tried to enter my meditative state as I pointed out the shortcomings each of her suggestions. It was exhausting. She said she would call me back in a month with resources.
Meanwhile, I caught the flu and it triggered life-threatening anaphylaxis (and an ambulance ride). I was so dehydrated from vomiting and incontinence that my body couldn’t even produce hives. My skin was gray and my organs were starving for oxygen. I never want to be that close to death again.
This is the perfect example of why ER visits are inevitable with this disease. I am allergic to flu shots and although I do my very best to shield myself from others’ illnesses, I am still exposed, in this case at work. So when Nurse Not Helpful, the insurance employee charged with the task of reducing my ER visits, called for the second time, I was eager to hear how she proposed I avoid these situations.
After suggesting several commonsense prevention tactics that I adopted long ago, Nurse Not Helpful said, “Well, this is just something for you to consider. I recently read a study that showed the benefits of swishing water in your mouth to eliminate viruses. Just regular water, nothing in it, every day. Maybe you could try that.”
I swear I could feel my mast cells pumping histamine into my body.
Things I did not say because I’m a good person:
Wow, why hasn’t anyone on my medical team suggested this innovative treatment? In fact, why doesn’t everyone do this? We could eliminate flu season! Hey, screw the flu, call the World Health Organization – let’s eliminate the Zika virus!
Did you know that stupidity is one of my triggers? Let me guess, you read it on the internet.
Instead, through gritted teeth, I said, “Sure, I’ll try it.” Now I’m a bad person anyway for lying.
Against my better judgment, possibly because my pain threshold is so high, I entertained a third phone call. This is all I remember:
Nurse Not Helpful continues with her haphazard line of questioning, “Well I’ve been talking with some providers familiar with your condition and they say that antihistamines are the first line of treatment. Do you take a daily antihistamine?”
“Yes, because otherwise I’d be DEAD. I take at least EIGHT antihistamine pills daily,” I replied, unfiltered. Apparently, our first phone call in which I spent 30 minutes listing my medications and doses was worthless.
I didn’t schedule any more phone calls. But she kept calling anyway. When I didn’t answer, she sent me a letter. Finally, I called her back and announced I was done with the phone calls, the “program” was unhelpful at best, and the insurance company should have contacted me a year ago when there was an opportunity to help. I may have also said that my time would have been better spent napping. Good riddance.