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.