My Crohn's Diaries

After my appointment with Mayo Clinic at the beginning of the year, I was feeling hopeful for the first time in a while. Unfortunately, the feeling didn’t last long. My doctor at Mayo submitted a request to my insurance to increase the timing and doses of my Remicade infusions. Nothing out of the norm, right?

Well, insurance fought. And fought. And denied the request because, according to them, I didn’t have an up-to-date tuberculosis blood test on file…even though I did. So, to appease them, I went and got the blood test done again.

Then they denied it again, saying the increased dose and timing were medically unnecessary. My doctor requested a peer-to-peer review to try to get them to change their minds. They ghosted her. They asked for records and then said they didn’t receive them…four times. They gave them four different fax numbers.

We were nearing eight weeks, when I’d be getting an infusion on my old dose and timing anyway. My doctor fit me into her schedule last minute to update me on all of this. She recommended I file a complaint against the insurance company because of how willfully obstructive they were being. She said she’d never had to fight so hard to get it approved, especially since I had a hospital visit in December on file because of my flare-up at the time. She said at that point, if they didn’t approve the new treatment by the following Monday, we would be switching plans to Rinvoq.

I got a call a few days later from my infusion nurse that the approval had come through. I got my infusion at the higher dose, and all was merry and bright, right? I even got to go off the Prednisone for the first time since October!

As a side note, I’m fairly certain the Prednisone was making me mildly depressed. So, I was so relieved to be done with them.

Well, it turns out, nope! I called my infusion center a few days ago since my next infusion at the four-week timing was coming up on Monday, and they let me know that insurance didn’t actually approve the higher dosing and timing. Which no one thought to tell me? And the paperwork I got in the mail said approved? And I literally got an infusion at the higher dose in February? Apparently, the insurance company only approved one change or the other, meaning either the higher dose or the more frequent doses, but not both.

And no one let me know until I was days from needing my next infusion. And my doctor was out of town. And I was blindsided.

My doctor came back into town yesterday, Friday, and sent me a message saying she’d call me in the next few days to discuss switching to the Rinvoq after all. I waited all day yesterday and…no call. So even though I was supposed to be getting my infusion on Monday, I no longer will be getting that, and I have no idea when the Rinvoq will be approved.

I’m back at square one, it feels like. I’m back worrying about symptoms and confused about what’s happening, and having no answers. I’m back to the instability of being at under the thumb of insurance deciding, despite my doctor’s convictions, that I don’t actually need the treatment I need to keep me out of the hospital. I’m back to being so, so sad about what’s going to come next.

Usually, this sort of thing makes me angry. Usually, I’m ranting and raving. But this time. I’m just defeated. And sad. And grieving, a little, the stability I thought we had achieved back in February. It’s the suddenness that is getting to me. The fact that I just got off steroids and now, probably, will have to go back on them. The fact that this, all of this, will be my life now, forever. Insurance and worrying and things going wrong. It’s like every time I get feeling good, something comes along to crush me again.

I’m sad! I’m sad! Oh, God, I’m so sad!

This disease is impacting me in so many ways I didn’t expect when I was diagnosed a few years ago. It hadn’t hit me, yet, what it meant. What the implications were. I thought at the time I’d just take a pill and live my life, and all would be well.

But these last six months have really challenged me. I was sick at my brother’s wedding. I was sick at Christmas. I had to cancel travel, a tattoo appointment, and events I was looking forward to. I suffered, and I hid it. I suffered, and I cried in my car in my work parking lot. I suffered, and I drove myself to the hospital, alone. I suffered, and I suffered, and I suffered, and I felt, all the while, my world narrowing. My possibilities dying a little. I’m now realizing that every decision I make has, in some way, to take my disease into consideration. Every plan, dream, everything now must include my illness.

I’ve never felt more like a sick person rather than a person who happens to be sick. And I know once we get this treatment plan figured out, I won’t be so stuck in it. I’ll be able to peer further out into the world. But for now, my vision has narrowed only to this.

I’m desperate for when my world will expand again. When my future won’t feel so limited. I know once I talk to my doctor, I’ll feel better. I always do. But right now, I’m in a real funk.

Cross your fingers for me that this new medication gets approved faster than this last attempt. With my insurance being the way it has been, I’m doubtful. And sad! And upset! And other words for those things! And that’s ok. It just sucks right now.