Today I gave myself my once-a-month Stelara shot. Although I don’t enjoy getting shots and even less so giving myself shots, every single month I pause for a moment and think about how grateful I am that I have the ability to do so, the opportunity to treat this disease–even if it’s not a cure. Even if it only works so well.
And these days, I also think, “Is this the last one?”
I mean, that’s a tiny big of hyperbole but only because I have three backup doses in my fridge at the moment. But earlier this week I had a message from my [insurance-based] pharmacy saying that they needed to get a prior authorization from my doctor for my medicine.
…I *just* did that a few months ago.
Something feels off about this and now there’s that worry in the back of my head–will this be a problem? Because it won’t be the first time I’ve had an issue. My meds cost a lot and I have Medicaid, which comes with a whole bucket of fears and problems, especially now.
Without this medicine, my containment of the Crohn’s Disease that rules so much of my life falls apart. When I had the ridiculous extended delay between medicines after I had to switch from the Remicade that was failing to Stelara and my insurance company Did Not Like It, things rolled back so quickly that I ended up needing a second surgery. My doctor at the time agreed with me: if I hadn’t been unmedicated, it wouldn’t have happened so quickly.
I’m scared about what may come here in the US, under this fascist oligarchy where those in charge hate anyone they can’t use for their own gain. I have several strikes against me, though not as many as some–and I’m even more scared for those with less privilege than I have. I have some security, at least for now, though the uncertainty remains for how long that will last.
I can’t march or protest using my body. I’m limited in that way. I’ve been using my voice to the best of my ability, and supporting others who are doing the physical work, the showing up in person part that I can’t do.
Every day I ask, “What can I do to help? How can I be most of use?”
We can’t all be on the front lines, however you want to define them. In my case, my power lies in words, in bringing a personal and clearly open and vulnerable voice to how this timeline is affecting me, and helping to inspire others and lift their optimism and/or belief that things can change and be better. I also excel at supporting others who can do the tasks that I cannot.
Maybe that doesn’t always feel like a lot to me, but I know in my heart that it is. Staying connected and in tune with what’s happening, and lending my positive energy to those who need it are important work, too.
While I am afraid every day of what is happening in this country and in this world, I refuse to let it crush me. There are still beautiful reasons to be here, and I let them power my resistance to those who wish me and others ill. That’s not always the easiest task, but I am stubborn and oppositional to destructive, selfish forces to the extreme; I won’t allow them to break me.
Fuck that.
I’ll do my best to make sure they don’t break you either. Even if my power is small, I am stubborn. That’s why I’m still here.
