It’s been a bit… Blah lately to be honest. The political scope is depressing and frightening. My Mini has been sick off and on. Normal kid stuff, nothing to be excited over, but a sick kid in a household of a chronic patient and an elderly patient… It’s all worked out so far.
The main thing is being able to find something to be grateful for within each moment. And laughter really helps. We’re a family who loves to laugh. The struggle to give Eddie as normal of a child/teenhood is real. With everything going on, it is so easy just to slip into depression and negativity. That’s not what I want for my son. Eddie is my sunny funny boy. He loves to make others laugh and I love him for it. He’s always been sweet and kind and fairly sensitive. Add in a big brute of a brother who suddenly gets sick, his mom suddenly not always around, loosing Grandma, Pap changing almost over night. That’s a lot for a teen to handle. Jim and I have juggled things fairly well. When Jamey needs me, I’m with him and Jim’s with Ed. Jim goes to almost all his games, he loves to be at practice, I go to all the games I can and I make sure he knows he can get a hold of me whenever and wherever I am. I’ve gotten criticism for it, especially since Jamey turned 18, but just because Jamey is an adult, doesn’t mean he doesn’t need his Mom. I’ve taught the boy well, but theres still times he needs me to speak up for him. It’s difficult to sit there and listen to doctors telling you things you don’t really understand and being able to ask the questions needed, even for me, but for a young adult who is living with it all? Who has a huge mistrust for parts of the medical profession as it is? Yeah, he needs me.
Jamey’s pain flare is wavering down a little. That doesn’t mean he’s out of pain, he never is, it means theres more moments when the pain is tolerable and he can actually eat a meal or walk downstairs. But during the worst of it, we didn’t know if an emergency would come up and he would need to go to the ER. We never know. The pain effects every part of his body, not just the parts that are in pain. And Chronic pain patients have ended up having heart attacks because of an untreated flare. So yes, chronic pain can kill outside of overdose. Even and especially in patients who follow doctors orders. They won’t take that extra dose. And right now, we’re tapering off his break through pain medication inorder to switch to something else, so I’m a little more cautious.
And the entire point in this is my Dad. He doesn’t feel I need to be at the hospital if Jamey were to be admitted. The man who is still mad about people not going to visit Mom the many times she was in. Jamey’s doctors are not local. It’s a 2 hour trip by bus. Forty five minutes by car. Yeah, I’ll spend the days there if I’m needed and I refuse to allow him to have no one there. He’s 20 for goodness sake and doctors don’t seem to like chronic pain patients very much. Everything takes time to work, there is no easy fix. There’s nothing to remove to solve the issue. So, basically the only thing they can do is move meds around and stabilize them until the next time. And the next time usually comes. We have an average of three ER visits before an admittance. And with how he is treated in the ER, the visits are few and far between. It’s easier to call the clinic.
OK thats enough of a rant on Chronic pain for now. Last week, Jamey met with a Neuro Psychologist. It was a mess going to the appointment. It was raining and dreary and our path was blocked by 2 accidents We were an hour late. Thankfully she still saw him. He had 45 minutes for lunch and got out at around 2:30ish (from 9:30 am) We knew it would be a long appointment and had cancelled Ed’s evening appointment so that we weren’t driving back and forth in rush hour traffic both ways. Jamey still had his 7 pm appointment. We had lunch at his favorite restaurant there. Tamales. We did go over and see if he could get into his appointment early, but no one cancelled. His doctor is pretty great, so I understood.
So we headed to a nearby mall and played with ferrets for a little while, checked on the availability of a book for Ed’s Easter basket (I have to order it) and had some burgers. (Jamey ate fries) All in all, it was an exhausting day that took him a few days to recover from. But hey, ferrets! And I was able to convince Jim that my Dad would not believe that Pharaoh sudden grew darker and smaller, let alone started chewing on things. The cute little baby ferret stayed at the pet store. Pharaoh has been an only pet for so long, we don’t know how he would handle a little one any how. It could be cruel.
I spared you the picture where I was busted for taking this one. Jamey hates his picture taken. He kind of shows his displeasure with obscene finger gestures.
Dad goes back to the VA on Tuesday. I really wish he would agree to some sort of anxiety medication. It would help him so much. He had a lesion cut off of his hand and received the results (that I still have to tell my sisters about) No cancer. Sisters have now been dutifully texted.
Valentines Day is this week. Jim doesn’t do Valentines well at all. And I don’t ever expect much. I’m not much one for trinkets and baubles to begin with. I prefer live plants to flowers that are going to die. Plants actually may have a fighting chance with me. Maybe. It’s a possibility. I do make things hard for him. But I prefer to actually be shown that he loves me throughout the year, not on specific dates. I like the hearts and the candy on sale on the 15th, and the little flying babies with arrows. But it’s a day to decorate for. Much like Saint Patrick’s Day. This household doesn’t drink, but I still like the festivities.
My favorite show comes back tonight. I’m a Walking Dead fan. It’s really the only show I actually watch every week in real time. The rest I catch on Hulu or Amazon. Maybe Netflix if I figure it can wait. No worries, I discuss the show on FaceBook, not here.
My 10 things of Thankful (and I should add more because I skipped last week. BUT…)
- Jamey’s appointment went well.
- He’s had a few days where he’s coming downstairs and his appetite has returned.
- No serious illness for Eddie. Just a bug that kept him in bed for a few days.
- I received another mobile frappichino from my lovely neighbor. I opened the door on Friday and there she was.
- The snow didn’t stay around very long (my son is not happy about that one)
- Jamey’s actually talking about his issues. He’s never once said anything to anyone other than close friends and family and he tends to understate to them. He wants a series of videos made.
- We’re still able to laugh every day.
- My hair will be not grey by this evening.
- The copyright holder on the song I used for Jamey’s video left it stand 🙂
- I am alive and kicking.
I’ll leave you with Jamey’s video. and the link to the new link up for 10 things of Thankful. It really is great and I hope more join in.