Diabetes: Levels of Care

I continue to fight with my insurance company about my prescription benefits. The thousand dollar HRA that my company provided me is supposed to go toward our $1100 deductible, and according to my account online, is billed automatically. This has worked when I go into the actual doctor, but it’s not working for prescriptions. When the pharmacy submits the claim, insurance insists I still have an $1100 deductible, and makes me pay the full amount out of pocket.

I’ve now paid nearly $500 in medications in the last month. Yesterday it was $179 in testing strips. Yes, for a month’s worth of testing strips. When I was poor and “not really insured” (I had a *real* $2500 deductible), I spent about $50 a month in testing strips. This change of brand and amount of testing is a decision I made with my endo based on what the new meter could do for me and what insurance would cover.

Thing is, there are levels of diabetes care, which I think that not a lot of people really get. There’s nothing so fucking aggrevating as relying on lab-produced drugs to live. If you want to live bare minimum, hand-to-mouth, you can use expired insulin, get free insulin from your endo, find a local “emergency pantry” diabetes clinic (ours is only open from 9-3 M-F, which basically means it’s not made for people who are employed), and test 3-4 times a day instead of 7-10.

And that, of course, is how I survived during that long dry spell between January and June. I used insuline for 60 and, once, for 90 days – two to three times longer than I should have, literally until it started working so erratically that I couldn’t rely on it anymore. I tested less often, with a generic meter that didn’t record my numbers, so I had to record them by hand. I did, in fact, use exercise and a low carb diet not just to control sugar but because I used less insulin.

This kept me at about $300/$350 a month in meds.

When I can get the fucking paperwork sorted out for this insurance (at this point, I have to go to my HR manager again. The “customer service” people at insurance agencies can’t change anything, can’t talk to your account manager, can’t research anything, can’t do anything but read back what they see on their screen, which is what you see on your screen, and they can’t make any sense of the billing error either, let alone fix it), I plan to get an insulin pump. Once again, an insulin pump is a very rich privileged diabetes choice. It’s expensive to buy, the sort I want is expensive to maintain (about $300 a month), and you still have to buy testing strips. At least this one comes with a built in glucose monitor.

Fighting with my insurance company has already brought me to tears twice. It reminds me of the days of expired insulin and the hoarding of testing strips.

There’s this strange terror about “giving” people “free” or “affordable” health insurance because, well, they’ll use it. I find that “fear” incredibly funny, because it’s not like we’d be “abusing” benefits or care… it’s just that for the first time in our lives, we’d be getting the proper kind of care we need. When I was underinsured, I didn’t go to my endo every three months like I’m supposed to. In fact, I’m supposed to be seeing an nutritionist and a diabetes educator in addition to my podiatrist and endo. I wouldn’t have seen my podiatrist for the minor complaints I’m seeing her for now, either. All of these doctor’s visits, using proper insulin, testing the number of times I need to, I wouldn’t be doing those things.

And, in fact, if this paperwork isn’t fixed soon, I *won’t* be doing those things, cause I’m about to max out my credit card.

Insurance, decent salaries, these are things that give us the *proper* level of care, instead of forcing us to rely on emergency care and tragic complications because of the bare bones strategies we’ve used to survive on our paltry salaries. I still have over a thousand dollars worth of hospital bills from those three emergency room trips I took earlier this year that I’m trying to sort out (none of which were even diabetes related). I can’t afford $500 a month in meds on top of that, and I don’t want to go back to the life I lived when I was paying $300 a month in meds. It wasn’t fun.

I do have a chronic illness. I will die without drugs. Without the proper level of drugs, I will die horribly and more quickly. In any case, I suppose, we all die, but if the care exists to keep me a productive member of society, why not do it? Why let the people who are willing to care for themselves properly die for lack of drugs?

Lucky me, living in America, I have a credit card. I’m white. I’m middle-class. I can find access to cheap or free drugs if I lose my job (we’ll see after tax season – nothing is certain), but what about everybody else? I get that there are a lot of diabetics out there who don’t take care of themselves, who don’t manage it, either from lack of education or lack of interest, but more and more, I realize there are a lot of people with poor self care who suffer from lack of resources. It’s an incredibly expensive illness, if you want to take proper care of it. It takes a lot of time and effort, and so much of that is completely invisible. It’s my Lantus and Novolog and my meter in the little black case. It’s discreet shooting up before meals, even more discreet now that I have pens instead of vials and syringes. Unless you see me work out or watch how I count out units of insulin and measure out units of food by eyeing it over every time (yes, every time) I eat, or you know I have to put on the “pause” button during especially fun and unexpected bouts of sex because my sugar is plunging and all my wiring is turning off, unless you see me waking up in the middle of the night with lows and testing three times between midnight and one am trying to make sure I’m not overcorrecting, unless you notice the way I stare at people running down the street so nonchalently with some envy, because sudden and unplanned-for bouts of exercise can strand me, shaky and blacking out, in the middle of nowhere, unless you see me nearly blacking out or constantly checking my pockets before I go for short walks to make sure I have sugar with me, unless you see me during one of those “unplanned” walks when I *didn’t* have sugar, well… I guess on a casual level it looks like no big deal. It’s just a shot before lunch.

There’s a lot of stuff you just do, this stuff that becomes part of everyday life, these things you have to weigh and measure and plan for and have backup plans for. There’s a lot of carb/insulin/exercise(personal and professional) math that goes on. There’s a lot of concern about having stuff I can eat around at work and family and restaurant functions. There’s a lot of feeling like a fuck up and a failure and a screwup and a broken person sometimes, too. There’s a lot of correction and overcorrection. There’s a lot of exhaustion when you meet new people and realize that they still think that all being diabetic means is that you can’t eat sugar (seriously). There’s a lot of non-interest in talking about diabetes and chronic illness among a group of people who have no idea what you’re talking about, cause they’re just not going to get it.

I get tired sometimes.

I was coming home from the gym the other night and watching some kids doing school sports drills and thinking, “Wow, remember the freedom in that? Of just running without thinking about it? Without wondering if you remembered that lifesaver in your pocket, without second guessing what you just ate, what your last number was?”

I was out and about last night, playing Wii boxing, and after two games realized I probably shouldn’t do a third because my sugar was probably going to plunge, and did I really want to test again at a social function? Because really, who wants to be “That chick with the chronic illness?”

Fucking nobody.

So I’m sucking up my $500 in medical bills until my claims get sorted out. I’m talking to my HR manager. I’m resolving not to get any more angry. I’m not getting hopeless. I’m remembering that it’s a gift and a privilege to be here, that I almsot died last year, that death’s a lot closer for me than for other people, that these are borrowed moments, and I need to make the most of them.

If all it takes to live a little longer is a maxed out credit card and jabbing myself with a needle ten times a day, really, that’s not so much at all.

I just keep telling myself that.

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