Some are worse than others, as far as how I feel when we get to the low end of that last week of medication. There are some weeks where I don't even realize until I check my phone and notice that it's on my calendar, where I thought I was feeling tired maybe because it was a long week. I have a blocker on my schedule so that I can take a "creative lunch hour," where I take my hour for lunch plus about forty-five minutes to get the infusion. The nurse starts my IV, mixes my medicine in the sealed bottle, and then adds it to a bag of saline. Once that bag is hooked up and plugged in, it takes about half an hour to run it through completely and then I'm good to go for another eight weeks, having attended to my scheduled maintenance.
I give myself permission to feel crappy on these days. It's a pain to disrupt my week to drive over to my doctor's office, patiently allow someone to put a needle in my hand, then sit there for about an hour, drive back to work, drive back across town, and then try to get back to my work day. So I grant myself some kind of a treat, whether it's coffee or whathaveyou, and show a little extra compassion to my body those days. In a way, recognizing my meds days is a way to also schedule some compassion for myself, pausing from my normal week to listen to my body and treat it with kindness. It's nice to give myself the freedom to feel blah, where I can say "it's a meds day" and have the weight of that understood.
...Only that didn't happen this month like it was supposed to. Every year I have to get a predetermination (which is very different from a prior authorization, apparently) on file for my doctor's office, that they don't want to give me my eight thousand dollar medication without some assurance from my insurance that they're going to cover it. On the one hand, I appreciate that because I don't want to be on the hook for a collective 48K worth of medicine for the year. On the other hand, they literally have the medicine in a cabinet and could give it to me, which is frustrating when it's right there.
The re-applying is not a surprise--my doctor's office handles these every day for their Crohn's and Ulcerative Colitis patients. Last week, though, I had a couple of voicemails from my nurses the day before my medication appointment, hemming and hawing about troubles with the insurance company. So, I called my insurance, too, and half an hour later I knew exactly what parts of paperwork they were missing and called my doctor's office back.
I know how to talk to my insurance company, to get the answers I need and move them to the next body. I'm able to do that to help myself. I'm pleased to have these skills and simultaneously furious that I had to do it, that I was making these calls the day that I was supposed to be getting my medication. In fact, when my insurance contacts asked when I was due for my next infusion and when I told them "today" they were surprised and explained how I could get expedited predetermination, because I bothered to ask if there was such a thing, and these were the same names that my doctor's office told me they were working with. The people at my doctor's office, I think, are new to this role, even made sure to tell me that the insurance company people were rude to them when they were calling on my behalf. I did not care if they had a bad experience--I wanted to know that I was going to get the paperwork in to get my meds. If I could steal a stack of coversheets and have it look like it was coming from an "official" fax number, I'd get a copy of my medical records and take care of it myself. I'm angry at my doctor's office for not starting this paperwork soon enough. I'm angry at my insurance company for the red tape. I schedule out my appointments several months in advance, so this upcoming infusion was not a surprise. I just wanted my damn medication.
The medication that keeps me out of the hospital. The medication that keeps me working so that I can qualify for the insurance to pay for the stuff. The medication that keeps me from feeling like shit. It's incredibly disheartening to hear your insurance company explain that they're trying to sort out, and I quote, "whether the medication is medically necessary." Medically necessary. I'm talking to people that have little to no medical training that get to decide whether or not they're going to pay for the medication that keeps me healthy and alive, because they have a checklist for some specific pieces paper with boxes and signatures in the right places. And if it gets denied for some reason, it goes to a review board which also are not required to have any medical training and see a small snippet of my medical history to decide whether or not I get to be healthy. If you think I'm being dramatic, here's a recent example. It's degrading to have to beg to get the care I need.
I know what can happen when I don't get my medicine, and it feels like you're slowly wasting away as the medicine wears off. I feel my energy draining. Every time I eat something, I feel a low, particular burning in my stomach that is the wrong kind of familiar. I feel constantly nauseous. Emotionally, I'm three kinds of messed up. Not only am I back in my trauma space, but I'm, appropriately, mad as hell.
I know what steps I need to take care of next, what calls I need to make. I'm pretty confident that I'll be predetermined soon, if only because I dragged everyone through--no one is going to have the same urgency about the matter that I do. And I absolutely will be calling both parties next year, about a month before this predetermination is supposed to hit again.
But there's nothing I could do for it over the weekend. Hopefully, I'll get my medication on Wednesday, only a week late. Time to cuddle a unicorn, sulk, and just get through.
No comments:
Post a Comment