If It’s Not Lupus

If It’s Not Lupus

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.

If this is your first visit, a little background: Positive Speckled ANA

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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