I do a health check in with my disease management program every several months and the most recent check in call came at a time when my Dexcom had died and my request for a new one was still under review with insurance, my Apidra prescription had been denied and a moron fill-in doctor wrote me a new prescription for Humalog without contacting me (and he called me “Mr.” in a message, clearly he didn’t read my chart) so when my doctor returned from vacation we started the circus of trying to get my Apidra covered by insurance that resulted in 3 attempts and fails to actually get the right paperwork to the right people and had me fearing that I’d run out of Apidra before I had a ruling. (Apidra arrived yesterday, now I’m trying to get the Humalog they sent me and overcharged me for returned.)

Anyway, one of the questions that my health coach asked was, “Does your diabetes interfere with your ability to do your job or other daily activities?”

My answer was “no” but I could have given her an earful.

You see the actual activities involved in managing this stupid disease are inconvenient but rarely impact my ability to work or be a human being. What interferes with my job and daily activities aren’t the finger sticks, boluses, corrections and carb counting, it’s all the damn red tape, phone calls, hassles and completely incompetent people that I have to deal with.

In general if you need to see a doctor, speak to their hospital, talk to someone at the insurance company, talk to someone at the prescription coverage company, etc. you have to do it during “normal business hours” or 8 am to 5 pm, although they don’t start answering their phones until 9 am in my experience. Which means trying to do it on lunch or during my workday.

Let’s talk about my work day for a second. I run the PR department at a marketing agency. I work with multiple clients and media outlets in multiple times zones. I get to work between 7:45 and 8:15. I eat lunch at my desk most of the time or coupled with meetings. I rarely leave the office before 5:30. My agency bills on an hourly rate and I have to keep track of what I spend my time doing every 15-minute increment of my day. In a billable-hour environment, time is literally money.

Sure, I could take some time to spend on the phone working through hassle after hassle, and I do, but that cuts into the profitability of my department and makes the to-do list pile up. So when people don’t do their freaking jobs right the first time, if affects me, my stress levels, my company, my clients, my department, my profitability, my family, my social life, my stress levels and in turn my diabetes.

Maybe I should have answered yes to my health coach. I feel like I’m going insane with this and even when the bureaucratic crap seems to be flowing smoothly, I’m always afraid that my next supply order, my next prescription, my next test, my next appointment or whatever will set the madness into some new and horrible spiral.

How hard is it to manage diabetes? Honestly, it’s not terribly hard most days.

How hard is it to manage the business of having diabetes? Super, seriously impossible nearly all the time.

Who should decide what I need to be healthy with diabetes (or even just stay alive with it)? Me, my doctor and maybe a little bit my health coach.

Who is actually deciding what I get to use to stay alive with diabetes? Business men, actuaries, insurance companies, pharmaceutical companies, computer programs. Rarely are any of those decision makers people who live with diabetes or even people with medical degrees. And the trials that they put us through raise our stress, blood sugar and blood pressure, literally taking years off of our lives.

I may sound dramatic, but it’s serious. It’s a problem.

I have no idea how to fix it.