The Ups With the Downs

by Renée Canada

My eyes have been burning for most of the day, so this will be brief. Start with the not so happy news: one sty has turned to three, my eyes are itching and burning, have a very rare cold sore, rash on face and deceptive sore throat still here more than a week later has me admitting I’m stuck in an autoimmune flare.

Good news, the rest of my body has been behaving pretty well today. But this breakout of what is undoubtedly multiple infections means I have two different doctor appointments set up for tomorrow. Pending those results, the rheumatologist may need to squeeze me in this week, which I’m dreading, Let’s hope I wake up tomorrow feeling better, or at least can find some solution that doesn’t require me getting more corticosteroid in injection form or a methotrexate shot.


Speaking of chemo, it’s been 12 days since I last had it in my system. Woohoo! Today was also the third day that I’ve been completely gluten-free and dairy-free for my lunch, not just for my breakfast and snack. Still need to work on the dinner preparers to help me keep this consistency complete.

Once I do finally get to sleep, I’ve been sleeping like a rock star the last several nights. I welcome the return of restorative sleep…and also vivid dreams.

My dystonia episodes are coming much later in the day recently, even though I’m not cutting them off at the pass with what had become my normal early afternoon anti-seizure med or muscle relaxant. Today, for instance I didn’t have my first real episode until 7:30 p.m. While it wasn’t a pleasant round of episodes, it was relatively short-lived, and I didn’t need to medicate for it to stop. I am still affected throughout the day in the jaw when I speak, but not so much that it hits full-blown, I-can’t-control-this-for-several-minutes ride.

This change in the dystonia has occurred in the last few days. Dare I link it to following the dairy-free, gluten-free regimen more strictly in the last few days as well? Perhaps not quite yet. It might just be a good spell. It might be from the recent good sleep due to allergies, the crazy humidity and having the a/c on at night, which I almost never do. Either way, it’s really nice. I haven’t experience reprieve like this in quite some time.

Now to just get the burning face to go far, far away. It’s so hard to keep my hands from rubbing or scratching, but I know that’ll just make it worse. All I can say is that I am looking forward to sleep tonight.

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