Yesterday I was literally sitting by my phone, checking it every minute like a teenage girl waiting for a call from her boyfriend, waiting for the doctor to call and tell me when to go in for my Remicade infusion. My pain was getting more unmanageable, I'd been avoiding food and liquid (food/liquid = pain), and other symptoms were coming back very quickly. The sooner I could get in, the sooner I could hopefully start feeling better.
Not 15 minutes after yesterday's post went up, I got the message from my doctor via email... It said:
"Your labs so far are consistent with worsening UC flare."
Ok, so I knew that already, but it's always nice to get the verification that's what's going on, I'm not nuts, and my doctor knows I'm not nuts. But the next line hit me like a ton of bricks:
"We need to step up therapy and due to insurance issues we'll have to try (insert drug name that isn't Remicade here). Hang in there."
Wait, what?
I was confused... What insurance issues?
So I sent an email back asking what the scoop was. I may have called my insurance "douchey." The nurse promptly replied and said my insurance won't pay for the Remicade until I try other medications first, and that medication is one that I inject myself with every 2 weeks, is primarily prescribed for people with arthritis, and was only approved for managing UC a few years ago.
You have got to be kidding me.
Of course I did some reading up on this medication... Some people say it works great, a lot more people say it doesn't work well at all for people with severe UC. While my nurse and friend explained it can be quite effective, she also explained that some people experience relief right away, others don't notice relief for 2-3 months (gulp). Even with that, there's always a possibility that it just won't work at all... And the impression I got from my doctor was exactly that. He wasn't really confident it would work... But if it didn't, we could try to submit for Remicade again in a month or so.
Frustrated and angry, I called my insurance... They said that for their patients who have UC, they have something called a "standard treatment tree." Once he'd followed that and if it didn't work, he could "talk to them about the feasibility" of using the Remicade. Until then, they suggest this medication I'm going on (which they're only covering for 2 months I might add, as they expect by then I will be "recovered enough to go back to my pill therapy"). No amount of begging and pleading worked. Even better, I was told that if I do the Remicade but pay out-of-pocket, I am "jeopardizing future coverage of all of my medical needs related to Ulcerative Colitis."
In short... I've got to do this medication, despite the fact my doctor said I need another medication, and if I do the Remicade on my own, they won't cover anything related to my UC because I didn't follow their treatment plan.
Because my insurance is never satisfied with doing anything halfway, including being totally awful, I got a call from the pharmacy who's supposed to fill this injectable arthritis medication. They were advising me that they were told by the insurance company they'd only cover a small portion of the medication because of it's "nonstandard application." Oh, and I need six rounds of it for my initial dose (six injections... Really?!), but they're only covering two every 14 days. I spoke to another nurse at my doctor's office who seemed confident they could explain the need for the six doses and get them through no problem, but the call from the confused pharmacist at 5:30 last night who said they got the new prescription and insurance is just not covering it makes me uneasy... To say the very least.
The whole thing just left me so drained and disappointed. How can an insurance company tell a doctor I don't need one medication, I have to use another different one? How could they tell me that if I get it on my own, they won't cover my UC anymore? How can they do this and then tell me they're not covering the medication they say I need?
I tried to take my mind off the whole mess, but it was nearly impossible. I took a walk. I had no less than three different people ask if I was ok or tell me I looked sick. I wondered if I could just lock myself in a room for the next month or two. Pro tip: if you see somebody you kind of know and you're not family, even if they look like death, don't tell them they look sick. What they hear is "holy cow, you look like hell, what's wrong with you?"
I think my breaking point came at like 4am this morning. I woke up with that familiar "oh God somebody is killing me" stabbing pain. I sat up, I went to get tea, and shortly after the last of the symptoms related to my UC flares returned in full force. I took my meds for nausea and switched to electrolyte enhanced water for my tea to compensate for getting sick, then I took a shower. What else can you do at 4am when there's nothing on TV but paid programming? Then I just burst into tears. This whole process is just so nerve-wracking. I'm nervous about the injections, if the new meds will work, if they will be covered, I'm tired of being sick, tired of being tired, scared of the pain, of having to edit my life to manage a flare again...
Did I mention, it just sucks?
The nice thing about a good shower and a good cry, for me anyway, is I end up getting it all out of my system and I end up feeling more prepared and, strangely, more in control and positive. I'm cautiously optimistic that this will all work out, it'll just take time. And time? I've got that.
Time, and a diet of nothing but tea, rice, broth, and trash TV.
So let's discuss:
- Isn't my insurance company douchey?
- Is douchey a real word? Because if it isn't, it should be.
- Does anybody have experience with self-injection of medications?
- What's your prescription for best trash TV for me to try?
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