Today Was a Good Day — Even When It Wasn’t

It started off like a really good day. I got some work done, went to pick up the boys, things were flowing — and then bam. Out of nowhere, it hits me like a ton of bricks. My ears start to hurt. My throat starts to ache. I’m suddenly so tired I can barely think.

But even with all that, I’m still calling it a good day.

Because before I started medication, days like this would’ve completely wiped me out. I wouldn’t have been able to move from the couch, and mentally it felt like I was sinking. Now? I can still live my life. And for that, I’m grateful.

I take Colchicine — and I’m also thankful for Alaris — because they’ve helped bring me back to life. I finally have energy again. I wake up in the morning and actually want to get dressed. I want to do things. I used to sleep in until 10am, not because I was lazy, but because if I woke up earlier, I knew something was going to be wrong. I’d tell myself, “Just sleep a little more, your body needs it.” But lately? I’ve been waking up at 7:30 or 8am — and not dreading the day ahead. That’s a huge shift for me.

It took over 20 years to get here — 20 years of not knowing why I felt the way I did. I would wake up dizzy, like I was going to pass out. I’d have to lie down after a shower because my stomach felt so off. Somehow, just lying down for 5–10 minutes helped. It’s such a specific kind of suffering that’s hard to explain to others.

I’ve since found out I have two genes for FMF (Familial Mediterranean Fever): PRO369SER and ARG408GLN. But that’s not all. I also have NLRP12, which is associated with Familial Cold Autoinflammatory Syndrome (FCAS). So I’m not just managing FMF — I’m also living with FCAS.

And that explains a lot.

It also makes it harder to find people who relate, because both conditions can look different from person to person. The symptoms don’t always match up. But I wanted to share this anyway — for anyone out there who might be searching for answers, or just trying to make it through another flare.

Even on days like this, I can still live a decent life. I can still feel thankful. And that’s why today was a good day — even when it wasn’t.