Is This Thing On?

Retro vintage style metal microphone on background banner

It’s been awhile, eh? After almost three years, I presume I’m talking to myself at this point. But, in case anyone is reading (hi mom!), I am truly sorry. I can’t explain much of why I was absent for so long, except to say that it was necessary, and it was not my choice. I have missed talking with you here, and I’m so glad to be back.

What’s new? Well, I’m still sick. Okay, I guess that’s not really news. But, I’ve added some new illnesses to the mix, so I guess that’s exciting. Ha. My doc officially switched my primary diagnosis from rheumatoid arthritis to psoriatic arthritis. I am winding down an 18 month stint on Simponi/Aria, which gave me some relief*. However, it’s become obvious for the last 3-4 months that its effectiveness is quickly fading, so she wants me to switch to Remicade. I know I need to give it a go, but the last time I took a spin at the “wheel of pharmaceuticals”, it took 2.5 years of trial and error to find something that got me to semi-functional (my pal, Simponi). So, I’m petrified. But the other option is continuing to watch myself go downhill. Not a great choice in the bunch, but a long climb is better than a certain deep hole, so here we go again. My fellow spoonies, I know you know what I mean.

On top of that, I am dealing with chronic migraines. It got to the point that I was having 5+ a week, and very often, they were untouchable with breakthrough meds. I spent a ton of time in bed, in the dark. Thankfully, after jumping through the (many!) treatment hoops required to be approved, I now suffer Botox torture once every three months. Torture is only a minor exaggeration, but wow, it works! I’ve gone from migraines almost EVERY DAY down to 1-2 a week. And most of those, I *can* manage through with some combo of meds, ice packs, etc. It’s been a miracle for me, so those needles are absolutely worth it.

There are other things happening too, but this story is getting long, so I’ll leave it for now. The bottom line is that I’m back, and I am thrilled to be (still) here and (still) able to have a conversation with you. It’s a new year — a new decade, even — and I’ve got a ton of thoughts about what I’d like this blog to become in 2020 and beyond. I’m hoping you’d like to join me on the ride. So, hi again, and Happy New Year! It’s great to be back!

* for those interested in the numbers, I quantified my relief this way for my rheumatologist. The drug took probably a week to kick in, especially given that side effects laid me up for a few days following each infusion. After that, I saw roughly 20-25% improvement in my symptoms for 4-5 weeks. After that, I declined rapidly, and would generally be non-functional again for at least 7-10 days before every infusion. When I write it out, it sounds pitiful, but this is the best I’d done on any biologic in years. I am having a hard time accepting that this tiny bit of relief is gone, and I have to start over.