At today’s rheumatology checkup, which I nearly missed due to misplaced certainty that it was scheduled for early next Tuesday morning, the doctor asked how I’ve been doing.* I confessed that my left SI joint was bothering the hell out of me but declined a steroid injection, telling her I probably caused the problem myself by again missing a couple doses of methotrexate.
We discussed some of the other mistakes I’ve made lately that I wouldn’t have made in the past, and the PT and speech therapy I’ll start in a couple weeks, and she looked troubled. “Have you had any problems getting your Humira lately?” she asked. “Is it still affordable?” She didn’t explain why she was asking, so I can only speculate that she was either concerned my insurer would stop covering it now that biosimilars have hit the market or she’s worried I’ll forget to refill the prescription.**
It’s rare for anyone familiar with Crankenstein’s work to ask whether something’s affordable — our families, who have no idea what she actually earns, act like she’s Bill Gates — and I appreciated the question. I said that for now it’s covered by a special zero copay program Crankenstein’s employer has for obscenely expensive medications (list price for mine is around $100k per year), but I don’t know if biosimilars will change that. She sent me home with two free doses, a kind gesture but one that made me a bit sad, much as I think she was saddened by my falls and forgetfulness.
There’s a piteous look I’ve gotten used to from doctors over the past few months and it upsets me every time. Though I can’t see anyone’s expressions as they read this, I don’t want readers to feel bad for me either. I’m hardly Tiny Tim and I’ve been conflicted at times about how much Parkinson’s stuff to share because I don’t want it to sound better or worse than it is — or for people to only follow along as a form of rubbernecking. Being candid about your struggles doesn’t mean they’re the totality of your experience.
This applies to posts like last night’s as well. No one needs to feel bad for me or villainize my former partner, who ultimately hurt herself more than she hurt me. We were going through difficult times and there was something wrong with her that neither of us understood (or at least I didn’t — if she was already aware of her cluster B issues, she kept it to herself). I find that tragic and senseless, not contemptible. It’s just as hard to live with as my regret about our mutual stupidity when it came to my physical health.
Anyway, let’s lighten the mood with some dorkiness… and intrigue.
I’ll be back later with an explanation of what we’re looking at, but here’s a closer look at some things that are easy to identify: Madam Basilova’s crystal ball (and Ouija board) and a TV that’ll go in a recreation of my earliest childhood home.
* Inattentiveness was also a factor, but it was mostly a matter of habit breeding overconfidence: I schedule close to 100% of my medical appointments for first thing in the morning, and probably 90% are on Tuesdays.
** Biosimilars are sort of like generics. There’s more to it than that, but as I wanted to tell Crankenstein a few nights ago about an obscure TV actress, “trust me, you don’t care.”