There are people spread out in my living room, taking up all my couch. Tonight I'm hoping they'll take over my bedroom, since Liz has to work from 2300-0500 tonight. Having the son, his squeeze, and the youngster Wyatt here is a pure joy. I don't get to see them often enough. As with Sarah, they are (especially now) just out of reach of travel. Sarah and Bo moved in with Liz, me, Dec, and Addie in late August. I do love having them here. But I don't get to see enough of Chance and his family, and they are sleeping in the not so comfortable living room on the couch. They are troopers, that's for sure.
Wyatt is two, and he acts like he's two. Now it's a riot, when I had two year olds of my own, it wasn't nearly so damned funny. He's just being a two year old boy, and sometimes it's hard for Ma and Pa to get the laughs out of him like I do. Sure, sometimes he misbehaves, all kids to that. And yes, sometimes he can be a little frustrating, but all in all he's fun. Just like Bowen is fun. Both of them were wired for sound yesterday, and I'm positive they wore out moms and dads. I sat back and laughed, because everything that was said to the boys to get them to calm down, sounded vaguely familiar. Oh yeah!! Because Liz and I had said the same thing to our two year olds. We've not had a two year old in the house since 2000, the year Dec turned two. So it's been fun.
I've had issues with a couple of things. One of them is this just dropping off in the middle of things. Even, if like last night, I sleep 4-5 hours straight through. I only woke up twice. Once before 2300, then not again until 0320. That's time for a shower, get drugs and food in, set a spell, then head to SBucks around 0500. Accomplished that part of my day quite well, thank you. So, I'm sitting in SBucks pumping my coffee down the feeding tube, reading the paper, when I drop off. Only for five or six minutes, but geez man, talk about looking like an old fart, catching a nap while having coffee. Good gosh. When I do that at home, it's for fifteen minutes to an hour. That still annoys me, but I guess I'm gonna have to get used to it. With all the napping during the day, and several hours straight at night, I feel like I'm sleeping more than I'm awake.
The other thing is some pain, mixed in with a majorly stiff and swollen neck. Lymphedema helps that a lot, but it seems like it's coming back faster than before. Such as this morning I thought I was going to have to get a hammer and pound my trach back in after my shower. While I shower, it seems like my sinus love to drain like Niagra Falls. That piles up mucus in the back of my throat that I can't suction until I get the trach in so I can force air up through it to suction most of it out. Other wise it feels like I'm choking, because it won't let air past the mucus plug. Liz was trying to give me a hand, and I couldn't explain to her why I needed to get the trach in first. That's frustrating for me and I'm positive it is for her as well. I'm going to keep my note book handy from now on, so I can write out what's going on before hand. We generally communicate pretty well, except when I've got the trach out. Then all I can make out is "phhhhhhhhhttttttt" the sound of air going out the tracheotomy hole rather than across my larynx. And it's too weird to stick my pinky into the hole long enough to say "I ha oo g is in erst". See why it's frustrating for both of us?
Yesterday I had issues with what I just finished typing, as well as more pain than today. I've got a nerve thing that makes my right arm hurt from the middle of my upper arm, down into my forearm. Bad enough that it damn near shuts down my ability to function even half right. It's something in my neck, trap, and rear delt. All of that is somehow nailing the nerve down and makes it crater the use of my right arm. I can deal with a lot of cramp, pain, tendonitis thing, but this makes my eyes water. It's something I'll get sorted out, and work around it, if I can't go "Hi diddle diddle, straight up the middle" with it, I might slow or stop it going around it. We'll see.
I took a long time to let my siblings know that I wish them a Happy Thanksgiving. That's terrible on my part. I said, and it's true, that I had some issues I had to take care of first. That was true, but that's still an excuse, and everyone knows about excuses, correct? Shame on me. I should have just toughed it out and sent them a text message right off the bat instead of putting it off. So yes, shame on me.
I'm noticing my face, neck, left shoulder, and clear down the left side of my body is holding a lot of fluid. That adds to the pain quotient, because it limits my movement without needing some excessive help getting the arm up and around for my. I'm trying to stretch more to keep the muscles and tendons limber, but at times that's where it feels like the fluid is hiding out. The PT and I will get it sorted out and maybe she'll give me a hint on where to rub and how. That way I can relay it to Liz and we can get after that stuff is settling in, and get it moving again instead of piling up. It also causes some pain in my neck (insert wise assed remark here) and face. The collection of fluid, or it's a coincidence, that makes my face swell and muscle cramp. When the left side of my face starts to cramp, it pulls the right side of my face in toward it, and makes my right jaw pop. When it tries to dislocate my right jaw, I almost cry. Damn sure makes my eyes both water. I'm not so sure that it's not worse than running a cheese grater up and down the back of one thigh, but it's close
And yes, my Thanksgiving was wonderful. So many people wished me so on FB that I am a bit overwhelmed with all the postings. I hear that I inspire folks, and that they are learning things about living through what I post. I get so much more than that from my friends and family, I get a big dose of humility. Some days I feel like I'm letting myself, my family and my friends down when I get bitchy and whiny. The both are consumers of time, and that's something I'll never have enough of any longer. If I can help one person, my friend Shannon for example, not be afraid to go get the check up they've been putting off, then that's all the thanks I really need. That's the one thing I was really trying to get across with making the blog. So we could all go through this together, face our fears as a group, and get done what we all need to do so we can grow older. I'm stuck, I won't get much older, but all of you who read this, I hope you can. For the record, no, I'm not afraid. I've already died on the operating table once, this time should be a cake walk. I have DNR orders, mostly so some doctor or paramedic doesn't bounce up and down on my chest again. That one time in MD Anderson left some bruises. And made me very sore. I'll pass on that this next time, thank you.
I'm giving up guessing how long I've got left. Tuesday I'd have sworn today would be it. Make Thanksgiving with the kids, then check out. Today, though, I feel pretty darn spry. And even if that only lasts a little while, I'll take it. So now, when people ask, How Long?, I can say with confidence, any time between right now and 8 months from now. I still make the best out of every day I'm around to pester folks.
Book of Rock: For God's sake it's Thanksgiving, why go out shopping and have near fist fights over shit you could buy tomorrow? Fights, arrests, and plain rude behavior certainly isn't within the Christian faith or practices. It's a shame adults act like that, then wonder why the young people act like ass hats. Maybe take a look at how you behave on Black Friday.
Happy Thanksgiving!!! Be careful out there, the nuts are out of the asylum