A Case of the Mondays

Y’all. Today is the Mondayest Monday.

Last night I had nonstop nightmares, but I can’t remember what the nightmares were about, so I don’t even know what to be afraid of. Killer spiders? Natural disasters? Escaping a car that’s filling with water (this one is on frequent nightmare rotation)? Who knows. I guess I’ll just have to worry about it all.

After the nightmarathon I discovered the kids will be learning and testing up until the last day of school, which, just, like, UGH. Isn’t the last two weeks of school just watching movies and signing yearbooks? I’m pretty sure we don’t have a yearbook because no one had their picture taken, but still, I have already mentally checked out. I have a wicked case of senioritis even though I’m not the one in school, and there is no room in my messy brain for more school assignments. And the testing, my God, THE TESTING. Pre-K did maybe two days of testing, just a few minutes with each kid. Second grade is a test every day for two weeks as far as I can tell. They do tests every three weeks, different tests for the end of the quarter, and then end of year tests, and I think I have sympathy ulcers for my kid. It’s a lot.

I got the kids fed and signed in to their school meetings and then did that thing you’re always afraid you’ll do but rarely mess up — I forgot to put my cup under the coffee machine before turning it on. Fuuuuuuck. Not as bad as forgetting the pot on a traditional coffee maker since I only spilled one cup, but still. Fuck.

I had a bunch of phone calls to make this morning and I don’t want to get a reputation for ranting about customer service folks, but when they go to the trouble to confirm your phone number and then you’re disconnected, why don’t they call you back?!?!? We have already established that you know who I am, why I’m calling, and how to reach me, and yet when I’m disconnected you ghost me. What have I done to deserve this? So I have to call all the way back through the automated system and reach a new person and start all over, only to be told that my insurance has decided to change the amount I pay for a prescription I’ve taken for five years. FIVE. Four of which have been with this same insurance.

The real cost is thousands of dollars a dose because it’s shipped priority overnight on ice and comes in a patented needle thingy, but why did the price suddenly change? It’s a fancy drug, but it’s been on the market since 2002. Surely after twenty years they haven’t found a way to make it more expensive and produce it less efficiently, right?

My favorite thing about the medical/drug/insurance industries is the finger-pointing. Because my drugs are shots and not pills, I have to get them through a specialty pharmacy, which is different than a regular pharmacy because I did not get to choose it. If a doctor writes you a script for Valium (blessed be the fruit) you can decide where you want to get it filled. Walgreens? Walmart? Grocery store pharmacy? When my doctor writes a prescription for Humira, my insurance connects me to their specialty pharmacy, and I give that information to my doctor who, on the third or fourth try, successfully orders my meds. Then the pharmacy calls me to schedule delivery, and lets me know what my insurance would like me to pay.

The specialty pharmacy has people on staff who want to ask me questions about my disease and treatment plans to make sure I’m taking the right medication for me. Of course, these people are not doctors, and they certainly aren’t my doctor, so I have no idea what the point of this exercise would be. The insurance company also has people on staff who call me to discuss my diagnosis, how it’s going, what meds I’m taking, and at some point in the conversation I usually have to explain some facet of my disease to the “expert” on the other end of the line. Thanks, but no thanks, rando. The drug company also has an “Ambassador” for the meds who calls to ask about symptoms and talk about treatment. Then I visit the doctor, where I don’t see the doctor, I see the nurse practitioner or physician’s assistant, who rehashes every twist and turn in my medical journey taking furious notes, and then sends in the doctor who has not read the notes and says something to the effect of “who are you and why are you here,” so I get to start allllll over again.

Having an incurable disease takes up a massive amount of brain space. I have to think about how every choice I make will be affected by an unpredictable disease. Can I travel? That depends on my symptoms and when I need to take my meds (it’s a pain to travel with a syringe on ice). Will I survive a pandemic? I have a huge risk of complications because the meds I take are meant to wreck my immune system on purpose, so I need to literally stay home until I’m vaccinated fully. Will the vaccine work? Recent studies say people who are immune deficient are not producing antibodies. So that’s fucking fantastic.

If there is a rare moment when I don’t feel sick, someone will invariably call and remind me I have a disease I’ll die with, to confirm my insurance, tell me they sent a medical bill, inform me that I require invasive testing in order to continue to get my medication, or have a nurse call to ask how things are going with my, “is it…chrones?” Lord have mercy.

I think all this is compounded by the fact that my son is struggling with allergies. Tomorrow I’m taking him to meet with an allergist and he will need the real testing with pin pricks all over his back and holding still and not scratching and hours in an office wearing a mask. As much as I don’t want him to have any sort of health condition at all, or fear for his life when a restaurant brings the wrong dish and he doesn’t notice until he’s taken a bite, I also don’t want him to have to go through all the medical/doctor/insurance/pharmacy BS I have experienced. It’s an absolute onslaught, and makes whatever condition you have so much worse.

There are so many people involved in a deeply personal situation, so that they can all pass the buck to someone else when things go wrong. The pharmacy contracted by my insurance says the bill is $60 higher than last month, and it’s not them, it’s my insurance. The insurance says they don’t understand why I’m taking this particular very expensive drug and they need more information from my doctor. My doctor says they have sent documentation to my insurance to show I have failed all the prior medications (“I have failed the medications” is the correct phrasing, rather than “the medications have failed me,” which is more accurate), but they claim my insurance needs further testing. So now I need to get scans and blood and x-rays, creating more convoluted webs of payment to the hospital, and a separate bill to the doctor who reads the results, and a separate bill for the dye and contrast, and now my insurance says it doesn’t really matter and the new price is just the new price. And oh by the way, the hospital’s itemized billing does not meet the exacting standards of the HSA, which is connected to the insurance but separate enough that they can claim they don’t know what “CT Scan” means and maybe it’s not a medical procedure they need to cover.

I don’t want my kids to have to deal with this garbage. No one should have to worry about convoluted medical bureaucracy while also dealing with serious health problems. One of the major burdens of chronic illness is this. Constant calls and checkups and check ins and getting things paid for that ought to be covered and defending yourself against a predatory industry that makes more money when you have more tests, or hikes the price of drugs you absolutely must have to survive, like EPI Pens. Calling to check in with a patient would be huge. If a doctor called just to see if I was okay, that would absolutely blow me away. But the people who call are just ticking boxes and no one wants to spend twenty minutes explaining their disease to a pencil pusher who doesn’t care and has no medical training. What is that for, exactly? Some sort of legal cover in case I die so they can be like “we called and asked if she was dying and she said no!”

If you’ll excuse me, I have forty-seven more phone calls to make. I had to get all my crankiness out here rather than taking it out on the next customer service person who has to tell me it’s not their fault, it’s actually a newly severed branch of the insurance agency that they are not responsible for and I’ll have to make yet another phone call to someone new. I know it’s just their job, and they’re doing what they’re told. But y’all, this is my life, and it’s about to be my kid’s, too.