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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Sjorgen’s Syndrome?

Sjorgen’s Syndrome?

I. Am. So. Ill. Today.

No Medical Marijuana news links for this week. I think I’m going to move to bi-weekly posts for that. Instead, a few notes about this crazy little autoimmune thingamajig I’m curious about: Sjogren’s Syndrome.

Point 1: Chatting with another Spoonie on Twitter this week, I was reminded that sometimes autoimmune diseases are sero-negative. I mean, I did know this already, but the conversation really got me thinking about how useless my bloodwork has been.

Point 2: Since I’ve mostly convinced myself that I have POTS, and since it is very often secondary to some other condition, I started looking into the possibility that I have some other primary illness that is sero-negative and not fibromyalgia. Perhaps something in addition to fibro or instead of fibro.

Point 3: I read up on Sjogren’s. (You may have read that Serena Williams has it.) I have so very many of its symptoms. There’s a lot of overlap in autoimmune and fibromyalgia symptoms though, so it’s anyone’s guess right now. Still I can check off too many of the items listed in this image from sjogrens.org to not ask my doctor about it.

sjogrens_body

Point 4: I was reading a study abstract (sorry, too tired to look it up and link it right now) that said that people with sero-negative Sjogren’s experience more intense symptoms. I have an appointment with my nurse practitioner (can’t see my primary doctor until late October, and that’s too long for me to wait) on Thursday. I might push for an MRI or see if there’s more we can do to investigate, since my blood isn’t giving up the goods.

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