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Monday, April 17, 2017

x's & o's

My new work out shoes.



Ode to @bonenado making it through Easter surrounded by women on all sides, including mom, sister, daughter, granddaughter, wife...


I mostly stayed in Mo Creatures. Bunny helped me name a raccoon and hunt for chicken eggs and then we had a discussion about why a rabbit didn't have her name, so another player helped me make a baby bunny and we named it after her. Outside of minecraft, blurs of activity happened in spurts with quiet times in between while the blurs ran around seeing other blurs, lol. Between being autism spectrum and aging through fibro, even though I'm having a fantastic year so far, inside my mind I feel like I'm on a constant lag. My psychiatrist says what I'm feeling doesn't match what others observe, but I think it's because I'm just really good at faking y'all out, lolz.

Halfway through April and so far so good on allergies. This was always my big airway rescue month for years, keeping my fingers crossed this'll make my 2nd year in a row not winding up in ER or clinic for pred rescue. I've hit 100 3 times now I think on my CPAP score, meaning I'm making it 6+ hours with good mask seal and low apnea counts. I can tell, though, that central apneas are going to continue to be a huge deal if I take meds any time after 4 p.m., so I'm still excruciatingly med sensitive, and no wonder I spent 20 years being a super insomniac. I used to think I made it through being ejected from that wreck without a head injury, but it's coming up with my sleep doctor now that possible brain stem area concussion might be the culprit behind me not breathing in my sleep. All this neck, jaw, and lower skull work in physical therapy can't solve that problem, so as I age, I'll probably be higher risk for something as simple as not breathing in my sleep because my brain can't tell me to wake up and breathe, and CPAP doesn't fix that kind of apnea. It can, however, make sure other apneas are solved and bring my OSAT up, and more oxygen to my brain means more overall continued healing and health, and more healing means a better chance of my brain being able to make me breathe when I stop.

I have always felt I'm here on borrowed time, and like I'm racing time to get done what I'm here for. I've said several times during crisis "I'm not done yet." I've never said "I'm afraid of dying." I'm very much afraid of having to leave the game board before I'm done here. Life sometimes feels like a Monopoly board and sometimes feels like a Parcheesi board. My life feels like both, all mixed in with chess. (Imagine Parcheesi chess Monopoly...) I've thought this way since I was a kid. The reason I write so much on the internet is because I don't know when I'll have to stop, and I can't count on there being a 'later' to do things. Between autoimmune reaction disorder (anaphylactic reactions) and central sleep apnea, even really good days for me could be over very quickly. I have lived like this every day for many years, always knowing today could be my last day. I'm working very hard on increasing percentages, ratios, and chances, but sometimes it feels really important that I tell people I love them just in case.

By the way, I'm NOT writing this because anything feels urgent or imminent, lol. I used to go through horrendous anxiety attacks that were way worse for feeling like I'd die any second than this feels. I actually feel really well the last few months compared to the last ten years, but those who know me know I'm always ready for that other shoe to drop, because it's just a habit. I'm writing it because I'm thinking it. Being on CPAP has brought this to a much more #inmyface attention.

What a morbid Monday, sorry about that. I'd better go do some chores.

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