Oh, the pressure! So much pressure!!

It’s been a bad CCI/Chiari day. Being upright means immense pressure in my head, pain and weakness throughout my entire body, unstable body temperature and heart rate, nausea, vision trouble, ears that keep filling up so I have to constantly work to pop them, and this “punched in the face and now I have a bloody nose” sensation – except there’s no blood whatsoever in my nose or even running down my throat like it typically does with a bloody nose. It’s like a raw, prickly, stinging, sort of pins and needles but not quite, with a fluid flowing sensation that encompasses everything from behind my eyes to my earlobes and down into my throat.

I’m braining at roughly 60%, and I’d call it an overall pain score of 7/10 with frequent spikes. I tried wearing my brace for a bit, and it kept me upright for mayyyybe an hour, but I’ve been horizontal most the day. I really wanted to get some cleaning done today, and it was in the high 60s (16-20 C), so I was also hoping for some time outside. No luck, though. Even laying down, my head hurt too much to think, and no matter how long I laid there each time, as soon as I was upright again, everything came right back.

Bending, leaning, squatting, turning my head, reaching, coughing, laughing, talking, clearing my throat, swallowing, twisting, reading, chewing, inhaling – all painful. Swallowing is trickier today, too. I wonder if I’ll still be this bad for my swallow study on Tuesday.

I’ve peed probably twice as much as I typically do in a day, and my poop is quite rancid, telling me my kidneys and pancreas have joined in the fight. Rancid poops, a symptom of pancreatic insufficiency, keep happening more and more often, almost everyday now. I’m actually getting excited about seeing the new GI the week after next, oddly enough. I know nothing about him, and he might be a typical Dr. Douche, but I’m anxiously awaiting definitive answers. I keep getting automated reminders that it’s time to get back in to my Endocrinologist, and I know I need bloodwork, but she just pissed me off enough last time I talked to her/her staff, AND it’s just one more thing that’s also a long-distance drive on top of the whole diagnosis and testing anxiety. I guess I’m hoping the GI will know what bloodwork to order and how to deal with whatever pops up. If not, then I’ll call the Endo. Part of it, too, is that she’s with the same hospital where I went for an in-patient EEG in 2015 and neuropsych testing where they told me it was all caused by depression – “she’s been so depressed for so long that she has forgotten how to be happy”, the arrogant cunt put in my report and then doubled down on when I told her she was way the fuck off. Anyway, maybe new GI or Gyno will have suggestions aside from telling me to go back to the same Endo.

Regardless, today fucking sucks, and I’m a little angry about it. If it were just today, then I could shake it off because these days happen. I’ve had several rough days in a row, though, each one worse than the prior in some way or another. Overheat and strip down. Get the chills and cover back up. Feel hungry so I work on getting up and finding food, but by the time I’m mobile enough, I’m nauseous instead of hungry and nothing sounds good enough to eat. Finally get my head/neck comfortable enough and have to move because something else hurts and vice versa. That incredibly annoying, antsy, ‘electric’ feeling is pulsing through my limbs, too, and I’m getting fed the fuck up with hearing the ‘heartbeat river’ in my ears.

Captain Grumpus, I guess, is my name today. I’ve not even mentioned which joints are fucking up aside from c-spine, that’s how much I’m hating all this damn neuro stuff.


Time to medicate and find something to watch. Hubby’s out playing pool and wingman with a buddy so I’m alone for a few hours. Hoping I’m sound asleep when he gets back because I can’t stand the smell of beer or whiskey, especially when I’m not well or trying to sleep. Plus, he’s a hyper drunk, which will just annoy the hell out of me.