I think this will be a weekly post I will enjoy. I can talk about our path and how it effects our family without too much guilt. It’s all just fact rather than opinion which could be skewed. This week, again, I won’t have time to link up, but that time will come again.
Mom came home today, which means adjusting to a new schedule and new stress. She can’t walk on her leg. I’m fairly sure she absolutely refused to go into a skilled nursing facility. And that makes it more difficult on me. I am not made to be a nurses aid. Too much causes me to gag and I have no patience for a lot of things. The biggest is passive aggression and Mother is the Queen of Passive Aggression. Her first words in coming home were that the porch needed cleaning. My Dad collects aluminum cans to scrap for extra cash. The entire side porch which is almost the length of the house, is piled up to the railing the whole width, with bags upon bags of cans. I am NOT going to go out there and clean that mess. It’s his. The last time I did? He started crushing cans and leaving them lay where I had spent hours cleaning. It is not going to happen again.
Then she started complaining about the house and doilies. I want to be completely honest here: I hate KnicKnacks and doilies. They are just collected dust collectors that cause more work than necessary. A few here and there can brighten a room, a mass explosion of them is tacky. I see no need to jump right on and put more junk out. Especially since she is currently refusing to toilet herself or do anything at all for herself. And I say refusing because she CAN do it, she just won’t.
This is going to be a long week. Tonight, I won’t see my bed before midnight and I was up at 6 am with Ed. I don’t do well on little sleep. And I need time to unwind. I can’t just drop off to sleep.
Speaking of Ed, he came home early today complaining of his stomach burning. He said lunch was greasy and he vomited. That makes me uneasy because we have been this route before with Jamey. It ended up being his gall bladder. Ed is around the same age that we knew Jamey was sick. We’ll see how he is in the morning, and if he’s still sick, I’ll make an appointment or we’ll take him into Children’s Express.
Jamey has some decisions to make, and they need made fairly soon. We need to make an appointment for a spinal cord stimulator consultation. If this bit about his medication has taught us anything, it’s that nothing is for sure. I’m half afraid that he’ll end up loosing his pain meds again due to their effect on the liver. That would not be a good thing, because with CRPS, the pain is relentless. And we have no fall back plan. He’s going to be almost forced to go for the stimulator trail and pray it works. If not, I don’t know if we have any other options. That’s very scary.
He has a Liver Disease Center appointment next week and 2 neurology appointments coming up in the next 2 months. I need to make a dermatology appointment, as well as one with his PCP, Psychiatrist, and back to pain to follow up after we make the SCS appointment. And who knows what the neurologists are going to decide. I’m in uncharted territory for us.
I also should have remade my own eye appointment. I need another test and to order contacts. Full disclosure: I failed my glaucoma test twice. I should be googling it, but there really is little sense. Whatever will be will be. I need to focus on Jamey and pray that I keep my sight long enough to see him through to good health. She asked if I had ever been in an accident that caused heavy bleeding (I haven’t). So I’m not sure what that means. As of now, I can see fairly well. But I’m also not going to jump on getting my drivers license at the moment.