Monday, July 31, 2017

Hello again, blog

I've been struggling to write, at least formally.

Dealing with my parents' illness seems to have sapped all the (limited) energy I once had...

TRUE CONFESSION: I don't want to see them sometimes.  It's so painful.  I try to go at least once a week to sit with them and bring them treats and necessities.  The last few visits have been really awful.  My dad barely responds to my presence.  Now I just sit next to him in silence sometimes, because he doesn't talk very much, except to grumble about getting out of there.  I don't think he knows me.  I wish I could comfort him, but there's no way to reach him.  I picture his brain, shrunken and clogged with amaloid plaques and neurofibrillary tangles, and wonder: how much worse is it going to get?

With my mom, it's even more devastating: she's very, very delusional and while she will sit and talk to me, nothing she says makes much sense.  Sometimes I think it's like she lives in a waking dream, forever lost in this hallucinatory world where she's being stalked by the devil and her children have morphed into cruel wizards or at other times are all lying dead in their coffins and my dad's face is melting and all the elderly residents in her facility are having wild riots and throwing chairs and her books have been subtly altered to mess with her head and her toothpaste has been poisoned.  It's more exhausting than you can even comprehend.

I would like to get back to writing poems again, but my head is not in the right place.  I just want to shut down, check out, lose myself in books or binge-watching or sleep.  I don't know if I will get back to any kind of creative work at this point.  It just feels so unreachable.  I tell myself this will pass, but I just don't know. Maybe it won't.

So, I come here and write, because at least that's something, to journal, to get some thoughts down, to say something.

I am, however, grateful for many things: my supportive husband and son, the medicines that have brought my own illness under control so I can function better, good books, good tea, a good night's sleep.  

Health-wise, I am okay.  I just got (another!) cortisone shot for my right knee and I'm definitely walking better, although it took a while and seemed significantly more painful this time.  I couldn't walk at all the next day and was almost in tears.  My stomach is still screwy but functional enough to get by...I'm looking at some herbal supplements and a different digestive enzyme to see if that might help with my gastroparesis symptoms.  I've got the vomiting under control, but still struggle with pain, nausea, and severe reflux. I've also been dealing with recurring ulcers on the roof of my mouth, which is minor but still sucks. Salt water rinses all day long, yo! I've been on Benlysta infusions for almost a year now.  I believe it has really lessened my symptoms and my labs look much better, so that seems like a legit observation, yes?

Okay my lovely blogstalkers!  That's it for now.