I have to remind myself that Oliver is cute, because he woke me up every 30 minutes starting at 2:38 last night. Lack of sleep makes the pain worse, and the pain is bad today. It’s partly the changing weather and partly not.
I think my anxiety is bubbling up because I got a text reminder of the CT and MRI appointments happening next month. Although I hadn’t been worried about them (and I count that fact a win because scanxiety is real) it’s a natural reaction for me to get an appointment reminder and then watch my body physically flip the fuck out.
So this morning I am reminding myself that there is room for this anxiety and fear. That it’s quite normal to be scared. And what’s actually abnormal is to suppress those feelings. Which, let’s be honest, is how I’ve been dealing with things for the past decade.
I knew it was bad when I was happy to have a brain tumor diagnosis, but I didn’t understand then how I got that way or if my aversion could be reversed.
I’ve since learned the resistance to that reality is what creates the added physical tension in my muscles. I’m fighting myself when I suppress feelings I don’t want to have, and it’s generating extra pain I don’t need.
One thing that brings me back to reality is when people care for me. And I don’t mean grand gestures or anything. For example Dan put some black raspberry butter on an English muffin for me for breakfast this morning. That helped.
As I was eating breakfast, I began thinking about how Mom bought the jar of jam for me at that shop in Springfield last Christmas and how Dan made me a toasty warm breakfast with a mocha and two mandarins to go with the English muffins.
And as I thought about those things, my anxiety waned. It can be really hard to think comforting thoughts in the middle of an anxiety spiral, but it always helps. So I’m trying to focus on the good things right in front of me.
And when that doesn’t work I try whipping out a guided meditation from Tara Brach or listening to a chapter of Unwinding Anxiety.
If it’s not lupus, I will genuinely be surprised. Wednesday day I had another CT scan from my neck to my nethers. And there’s a lot of stuff messed up in there, but the thing that has me guessing SLE (lupus) is that there’s a new nodule on my lung.
Now, the CT report says “suspicious” for malignancy, but it was ordered by an oncologist at a cancer center, and I think we’ve already discussed how when you’re a hammer everything’s a nail. I probably dismissed a lot of relevant symptoms myself because “brain tumor” and “chemo.”
But here I am, trying to be a whole-ass episode of House.
Maybe I should be more concerned about cancer again, but I’m desensitized to cancer scares like a “conservative” American is desensitized to gun violence. I’m honestly more concerned someone is going to suggest another biopsy, and I will break down in tears at the thought of paying for it.
By the way, I am not strong anymore, and I don’t have to be or want to be. This has been going on too damn long for me to absorb any of that nonsense. So if you’re thinking it, keep it to yourself. I might go emotionally all asplody without warning.
I have an appointment next week with a nurse practitioner at the rheumatology place, where no doubt I’ll be giving up some blood. Maybe they’ll know something no one else does.
Oh, and I seem to have inherited my Mom’s diverticulosis of the colon. Not a major concern right now, but still: annoying-guh.
My list of symptoms is too long to list in full, but the most interesting and bothersome to me are: symmetrical sun-induced rashes on my elbow bends and shins, giant lymph nodes, heat sensitivity, random allergies to new things, and the ever-present muscle pain and weakness.
Basically my bones and joints are the only things that don’t hurt. So in the world of crappy autoimmune diagnoses, I don’t think arthritis is likely. I guess that’s something.
The CT report also mentioned something about a misshapen bladder. “See,” I said to Dan. “I told you all this inflammation is taking up needed space! No wonder I have to pee every three minutes!”
I’m more than ready for a(nother) diagnosis. While I appreciate the professionals not wanting to mask any of my symptoms with drugs, I’d probably sacrifice a small child if he was waving around a steroid prescription right now. Think of it like reverse ‘roid rage.
