Mastodawn

Ok rambly (because pfft executive function) update on my life, my health, and my brain, for anybody following that, and maybe a query for feedback, suggestions, commiseration.

The end of Jan I switched from prednisone to hydrocortisone, which was a huge YAY as it turns out I was quite sick from the side effects of the prednisone (lots of brain/autonomic nervous system stuff).

But we undershot the conversion by about 1/3 and I crashed horribly. BOO.

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Valerie Roney 2d ago

So Feb was pretty awful as my cognition and language unravelled. I lost most of my reading comprehension and visual processing, and was just straight up mute for good stretches of time. Also BOO, very boo.

But it did illuminate I still have active inflamation in my brain the steroids were helping. YAY?

I have been a couple of weeks on a more appropriate dose and starting to feeling better, but the language stuff is still a struggle. Frustratingly so. Definitely BOO.

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Valerie Roney 2d ago

At this point I think I have to just shift and plan for this kind of brain for a while. I'm struggling with how to stay connected on here, this community really matters to me, but the frustrations in finding windows of language to respond to replies, to not be able to engage in discussions and banter are making it feel like a burden not a joy (to clarify, the obstacles in my brain are a burden, not the lovely thoughts and comments from you lot).

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Alan Bucknam

@vlrny just remember you don’t owe any of us interactions or text. If you want to, and have the capacity and energy to, then yay. But it’s not an obligation. Social media is designed to make it feel like one, though; that’s the problem.