Drug roulette

I don’t actually know how long I’ve had rheumatoid arthritis. I do know that when Hank was about four months old, my symptoms got bad enough that I noticed them, was bothered by them. If you’ve scrolled through my twitter, you’ve seen me complain about it. My hands ached all the time. When I woke up in the morning, my feet felt like all the tiny bones were broken. I urgently needed to sleep, but of course every time I mentioned that to a doctor I’d laugh it off like “oh, but I have two kids so… you know.” I remember a cartoon about first time moms taking their babies into the pediatrician, and how the process can make you feel crazy, because it’s either “oh, this is nothing” or “why didn’t you come in sooner?” When you don’t have a baseline for normal, it’s hard to tell what merits a doctor’s visit, and the angst over it is even worse when you factor in what an incorrect guess is gonna cost you (yeah, that’s totally fine, absolutely nothing at all, that’ll be $145.) Lyme Disease threw a million weird symptoms at me over the course of a decade, and I just got used to being a person who was exhausted and in pain and would sometimes be hit by some truly bizarre symptoms. That’s my baseline for normal.

I knew it was a thing that wouldn’t go away, though. I knew it had already gotten worse inside the space of a few months. I knew it made it incredibly difficult to do things I needed to do every day, like change diapers. Do you know how much you use your thumbs when you’re moving a baby around? A ton, it turns out, which I only discovered once I couldn’t use them. I still dragged my feet about seeing my GP, though, because I dreaded going through the specialist shuffle again. It took six years and what felt like a thousand medical tests and visits with ologists for someone to diagnose my Lyme. I saw everybody, and I did every test. I did one, which I fondly called the ol’ poke n’ zap (they put a needle into your muscle and then shock you with that needle) three times. Everything about it is exhausting, and it also sucks up an absolute ton of your time. Researching doctors, making appointments, sitting in waiting rooms, following up on referrals, getting all of these many tests and lab slips completed and then running down results. Specialists can never see you until three months from now, no matter when ‘now’ is, and if you end up with a shitty one, you have to fire them ans start all over again. Did the first office send over your scans? They never do. I resented all the time wasted, and was exhausted in advance about having to do all of this waiting and testing and waiting before I could even hope to maybe get some relief.

I’ve learned a couple of things from a decade of being what felt like a professional patient. I’m a lot faster to fire a terrible doctor, for starters. The first doctor I saw about the RA wanted me to do PT. I have nothing against physical therapy as a concept, in fact I’d already done months of it, and was still doing exercises at home that weren’t helping. When I told her all of that, she… said that she wanted me to do PT. But more, though, I guess. We’d wait and see, and in six months we could revisit the idea of medications. I said that I’d take that under advisement and immediately scheduled an appointment with another rheumatologist. He said that I definitely have some kind of inflammatory arthritis, that it’s most likely RA, and that patients do better long term when treated aggressively early on.

The nature of the disease, and the nature of the medications used to treat it, means more wasted time regardless. Basically any medication for it – DMARDs, biologics, JAK inhibitors, I’ve learned all the classes – takes three to six months before you can declare it a success or a failure. Three months isn’t so long in the grand scheme of a life, I know. But parenting small children means being assaulted with the passage of time every day. Three months to a toddler is a whole cycle of development. I look at photos of our big kid from six months ago, and he looks so small. It’s also a long time to be in pain, daily, constantly. It’s a crap shoot, there’s no way to know if a medicine will help or not. There’s no test for that. You start the thing, you wait three months, and then a doctor asks you “well, do we give it another three months?” And truly, how the hell should I know?

At my last visit, I talked to my doctor about commercial people. The people with moderate to severe rheumatoid arthritis, who asked their doctor about Xeljanz. They’re mountain biking, and moving boulders around their gardens, and laughing in the sunshine. Those people are never just muddling through a day, they never have to ask their husbands to tie their shoes for them. They can open all the jars they want. They put baseball spikes on their kids’ feet without breaking down into tears. So I asked my doctor what the goal is for these medications, are we looking at harm reduction or is it a reasonable goal to be able to live like the commercial people? He said remission looks like mountain biking, and gardening, and sunshine. But there’s a catch, of course there’s a catch. If I give up my Humira that’s helping some (but not enough), to try something new, I may not be able to go back to it. Like an ex-boyfriend, it resents me moving on and won’t work anymore. Things might get better, or they might get worse, and I won’t know for three to six months. High stakes gambling, but make it healthcare.