Nothing to say …

everything to say…

I find that without IRL friends – alive ones – I spend a lot of time internalizing my thoughts and I spend way too much time talking to myself and I spend shitloads of time talking to dead people that can no longer join in on the conversation.

My husband is fantastic – he’s my best friend. Has been for 29 years. But a girl needs more. I need to talk into the wee hours of the night and get our nails done and do lunch and all that fun stuff. I don’t have anyone to unload to about Jay. Can’t bitch about someone to that someone. That’s rude. I’d rather talk about him behind his back. Can’t do that to my mom because when you share negative shit with your loved ones, that’s all they remember. My sister is moving, but we only talk occasionally anyway.

Anyway…

Summer is quickly approaching its end. I’m sad because we no longer go to the pool or the beach or the aquatic park or the water amusement park. ~I a n~has bent legs and turned in feet. He needs cushions to sit in most places. Or his chair. It’s hard making it work. We are stumped with ideas on fun things to do in a wheelchair. I want his days filled with fun, not bottled up in his room always playing video games.

Although he loves those video games. I think they keep him sane. Or at least occupied.

I wondered today about what he’ll look like when he’s older. Then I choked up because that’s all it takes for my brain to remind me that he probably won’t be ‘older’. Immediately I feel punched in the throat. Reminder #475,987,346 that my son is terminal. Terminal. I found a website on Duchenne that had good information on research, and there was a flashing banner — Duchenne is 100% fatal – there are no survivors — And I thought – really? I get that they are trying to incite a donation reaction, but it made me nauseous. More than that – it made me very fucking angry that all I can do is watch blinking signs that countdown my son’s life. I can’t DO anything to his attacker. I can’t kill it. I can’t throw money at it. I can’t wait for medicine to work. I’m not sure if prayer works, but it’s all I’ve got. I find myself talking to God quite a bit too. I decided that yes, I’m agnostic to a point, but that doesn’t mean I don’t believe. It means I have questions. Lots of questions. I hope God doesn’t find that offensive.

I can’t believe it’s 11 already. I got home at 8:30 – sat down, paid a few bills, read a post or two (or 47), and sat down here to write. Hot Damn! I can lose some time. I’ll check my fitbit later to see if I took a nap. I never realized how many naps I get. I don’t realize I’m asleep, and when I wake up, I pick up where I left off. I think something’s wrong lol. I always thought narcolepsy was bullshit. I don’t think so anymore. I do it while driving. Yeah. I have done it while talking. While listening. While bathing. Very annoying.

I don’t sleep when I’m standing. So I’m going to go clean something.

A month?

A Fucking month Ang? My gawd. Way to get back to blogging.

I have been busy. I have been working a lot. I have been really tired.

Blah Blah I know.

I’m here now, that’s what matters. Yeah.

My pdoc is leaving the practice. Going somewhere I can’t follow. I am crushed beyond words. I love her to death. I would not have made it through my son’s diagnosis without her. Or dad’s death, my sister’s cancer, and my cousin’s murder. She’s the reason I don’t have nightmares anymore. She’s the reason I don’t have to check in every month – I decide. Every three month or so. Sometimes longer. I’m ok now. She gets that. More importantly, she believes that things could get ugly real quick, so she really listens to me about the meds. I want to take them, they make me feel better. They make me a better person.

Someone else isn’t going to understand that sometimes I need the propranolol and sometimes I don’t. Same with the adderall. Shit, no psychiatrist is going to let me keep my adderall. Me, bipolar. Yeah, no. I can hear it now. Hopefully my 5 year history proves that I only take it when I can’t get my shit together mentally. I’m not hooked on phonics. Personally, I don’t see what the big deal is. I feel nothing when I take it. I simply think clearly. Calmly.

WTF am I going to do. When the receptionist called and told me, she said that the doc had her schedule last appointments with a few and I was one o them, so at least I get one more appt with her. I’ll ask recommendations and such. All while I try not to bawl. 8 years. A sixth of my life. Dammit.

Enough of that. I get this feeling like I’m about to be pushed out of the boat – and I’m not sure if she taught me how to swim well enough. Sheer fucking panic. THat’s what I’m feeling. So… enough of this shit for now.