The Good in Bad News

Today was bad. Not just today, the last 10 days really. When they told me the Humira wasn’t working there was a lot of hope pushed onto Cimzia, so much that I think I may have even managed to placebo effect myself. My primary care doctor was more zealous about the Cimzia than my rheumatologist was, but I was sort of expecting the double injection to do something. Maybe it wouldn’t work for long, maybe it would just buy me a few months, but it would do something, and I could be normal-ish feeling for a while. Right?

Wrong.

It didn’t do anything. In fact, I’ve been sleeping nonstop since injecting last Thursday. I’ve dragged myself out of bed for work, and been pseudo-grateful the guy was out of town, because I’m just that tired. It’s the kind of tired that people who don’t have a chronic illness can’t fully grasp unless they’ve had to work a full day, with the flu, while walking uphill the entire time.

Yes, I’m that tired. 

So today I woke up, and my lip was numb. I thought, “That’s odd,” but I also was so damn tired I didn’t know how I was going to make it to work. My head was throbbing. “That’s odd,” I thought, again, because I hadn’t gotten the bad headaches since before starting Humira. As I sat in my shower, on a bench I bought, because I’ve been too tired to stand during a full shower, I worried I’d be late to work. Then I shoveled a donut in my mouth. Oh, did I not mention I was eating donuts in the shower? Yes. I was eating donuts in the shower. Can’t be late to work if you combine activities you should never combine.

Perhaps, at this point, while eating powdered donuts in the shower, I should have stopped to evaluate the efficacy of my current course of treatment, but I didn’t. I just ate my donuts, and dragged my tired ass to work, where I realized the numbness in my lip was a precursor to pain. I wasn’t just getting an ulcer, I was getting a mouthful of ulcers. And my head didn’t just hurt, it was pressure, because of inflammation. Oh, and I wasn’t just tired, I was exhausted, and dizzy. Full on flare mode engaged.

I called my rheumatologist before I even went to work but she never  called back. My primary was next on my list, and I called him at work. I made an appointment for tomorrow (today now I guess) but left a message explaining my symptoms and that I thought we should probably pump some steroids into me like, ASAP. He agreed because within an hour I had a call back saying I should come in ASAP and get the max dose if I was really flaring the way it sounded like I was.

Like a sign, my boss comes through and announces that it’s slow, and one of us can leave early if we want, before he himself skipped out. My coworker didn’t want me to go because she wanted help closing, so I offered to leave and come back. It would mean $30 out of my pocket to do it, and basically nullify the tips for the night, but if it meant I would stop feeling like death was coming, it would be $30 well spent.

My primary care doctor and the medical student found more oral ulcers than I’d noticed starting to crop up. In fact, they found a few that were already formed. Nice. As I showed them lesions on my legs, one on my hand, and the bumps on my face, along with the bruised legs, I could practically feel the needle full of steroids going into my ass. It’s fine though, I needed it. At that point however, the doctor said something I wasn’t expecting.

I probably wasn’t going to give Cimzia another chance in two weeks. We were going to start blood tests ASAP to clear my for Rituxan. 

Come again now?

I knew that Rituxan was the next step, but I guess denial was a wonderful thing while it lasted, because I thought I had a few more months with my B-cells. Now it might be a few more weeks. I’m contemplating a party, because why not? I’ll have to be a bit of a hermit after the infusions since I won’t have an immune defense left…but that’s kind of the point isn’t it.

The guy pointed out several studies though, in which Rituxan therapy, as shitty as it is in theory, is practically perfection. Diseases go into remission. You don’t have the whole body impact that other chemotherapy type drugs have, because Rituxan only hits B-cells. Sure, you’re wiping them off the planet, but I mean, they’re not really doing their job anyhow…so why bother keeping them around?

Still, I think I’m going to have a party. I like parties where you wouldn’t normally think celebrations would be in order. I fully intended to celebrate the finality of my divorce with a party, but if I’m going to be severely immune compromised, I probably won’t be out doing that.

The logistics worry me. What about work? What about classes? How immune compromised will I be?

Then there is the guy. This person who is casual, but somehow the biggest supporter I’ve got. Who insists he’ll be there with me through the infusion, watching shitty movies, and if if they keep me (as they should) overnight because of my allergic reactions and whatnot, he’ll stay as long as they let him. This wasn’t how I grew up. Getting sick was a bad thing, for everyone, it took time and resources away, so there was this huge stigma attached to it. Get better, or deal, don’t ask for help, and if you’re going to be sick, you better BE sick. Seriously. Don’t waste a parent or doctor’s time with a trip if you weren’t seriously in need.

I get that isn’t how the majority of the world works, but in my family, it was a thing.

So yeah…my shitty b-cells are getting evicted. I’m not sure how I feel other than conflicted. I wish they’d just do their job, but I guess that isn’t in the cards.

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The Good in Bad News

One thought on “The Good in Bad News

  1. Tamra Hoffman says:

    Omg I am so there with you right note but because of melanoma I can’t even try regular biologics my doc went straight to Retuxin. I have had my first two infusions and I thought they might have been working, it’s been 6 weeks, but then out of the blue a couple days ago BOOM here comes another Behcets flare. I know it can take longer to work but I AM SO FRUSTRATED. More sores all over my neck, face, back the joint pain is horrific. God does this ever end. I hope it works for you. Prayers from another “special” case with Behcets.

    Liked by 1 person

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