Too Tired for Hope

Too Tired for Hope

I didn’t sleep well last night. Yes, again. I was overthinking the whole lupus-rheumatology thing, even though I promised myself I wouldn’t. So it’s back to moving the compulsive thoughts to the frontal cortex. I’m not feeling anxious, really. Just uselessly spinning the cogs, because I can’t do anything else.

On one hand, I’m tired of wondering what’s wrong, bitter about needing to. And on the other hand, I can barely use a fork because it’s too heavy, and wouldn’t it be nice to know why? Maybe even treat it?

I vacillate between letting myself hope for something better and believing the only thing I can trust is that medical pursuits are colossal wastes of time for me. All this time I should be living while the tumor isn’t growing, and instead I’m stuck in bed. Saving all my energy for getting to the toilet in time.

It’s depressing. And not just a little bit.

I made a document on my phone of all the symptoms I can think of, trying not to be dismissive of anything. If it’s caused by the brain tumor or a long-term side effect of chemo, I need to let the doctors say so. Maybe I’m ignoring something telling, writing it off as insignificant because I don’t know what’s what anymore.

The positive ANA test does point to something. Lupus or Sjogren’s Syndrome or Myasthenia Gravis. But I considered all these things before, years ago. And what showed up was a brain tumor.

When I first met my primary doctor here, she asked me if there was “anything else” after we went over my diagnoses. “Not that that isn’t quite enough,” she added. We laughed, because what else are you going to do?

I’m too tired for hope today. Someone else can do it instead.

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4 New Appointments

4 New Appointments

I started the day with one appointment and ended the day with four new appointments between now and early July.

My oncologist asked if there was any particular reason I didn’t do my infectious disease and rheumatology appointments. I explained that I was too tired, there were too many things going on, and I needed a break.

He understood but encouraged me to see the rheumatologist because of my positive speckled ANA results, and then he mentioned some soft tissue shenanigans and wondered about lupus.

Man, I am not Googling that shit again.

I asked the doctor if there was any rheumatologist he could refer me to in Illinois. I knew the answer. Dan’s been trying to get one for his psoriatic arthritis for a hot minute without luck. But I had to verify.

(For those who haven’t heard: if you’re pregnant in Missouri you can’t get a divorce even if your spouse is abusive. And that’s not even the half of it. Missouri is bass ackwards, and I hate the idea of my money funding that fuckery.)

“Should I send the referral? Are you OK with seeing one in Missouri?”

He held a finger over the mouse, waiting for my answer before he clicked.

“I guess,” I said. “I don’t really want to, but I guess I need to.”

So it’s, MRI, CT, rheumatology and oncology in the next 7 weeks. I’m not sure how that sounds to the able-bodied. But to me it sounds like pure hell. Heat, car rides, labs, tests, insurance, doctors. Ugh.

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