Yep, I've been frustrated lately. I'm back to the point very few people can make out very little of what I say. Back to writing everything out. In a fast conversation that leaves me sitting. Not really a bad thing, I guess, but frustrating. Recently it was getting the PEG tube changed, and not a soul owning up to the fact they dropped the ball. So much for responsibility, right? Hospice used to get that done in the ER in the hospital. Not any more, the doctor that did them moved on. ER says they haven't done one since. Communication, folks, saves looking like ass hats. I got the PEG tube changed, but not after considerable hassle, and having my ask my wife to make calls, because I can't speak. Frustrating. Yesterday kinda capped off a frustrating week, and I wasn't nice about it.
Liz and the Endoscopy Dr, Patel, and another woman all get the planets lined up and I get a new PEG tube put in at noon tomorrow. The Dr was running late, but his assistant came out and explained that to me. Therefore, I wasn't frustrated with that. I know that sometimes things happen when you're a doctor that can't be helped. In fact, they moved me to the head of the class. He gets there, and here is where the fun really begins.
Turns out my old PEG tube doesn't have a balloon at all. It's simply a piece of rubber that's looks to be about four to six times larger than the stoma opening in my stomach. So, four to six time larger than around one quarter inch. So an inch to an inch and a half bigger than that hole. That's substantial. Doc Patel says "This is really going to hurt. I have to pull the tube out. There will be some bleeding so don't freak out". Yeah, whatever doc, I think. I set my own broken fingers and toes. A doctor in Russell Ks set my simple fracture of my left arm in his office, with no anesthesia, when I was Seven. Big deal, pull away. Okay, yeah, that hurt like a son of a bitch. Hurt a lot. So much in fact that I had to ask for a few minutes until the sweating went away so I could get a placement x-ray to make sure the new tube was where it belonged. Painful, not frustrating. That comes later on in the day.
Yes, the taking the old tube out hurt like hell, and putting the new tube in really irritated an already sore spot. I drive home, feed myself so I don't get a hypoglycemia problem to go with the soreness, and set down in the recliner. I fall asleep. Slept maybe 45 minutes. Get up and fiddle around, out for another 45 minutes. Come about 1600, I got out for almost two and a half hours. So the tube ordeal was tiring. Here's where I got damn frustrated. Since I didn't trust my stomach not to throw up soon, I got up and had a snack. I didn't think the entire serving of the Obama was going to stay down so I didn't eat as much. I did my drugs shortly after. Here's the frustrating part. I didn't pay attention (so this is all upon me) and I find that the new tube doesn't have a line clamp to shut it off. Really? So in trying to crimp the line enough to get the drugs in is doing nothing but making a huge mess. They can't redo and put a clamp on the line. Not without taking the entire thing out again. So, yeah, I'm frustrated big time. On one end at myself for not being more observant when the doctor put the new one in so I could ask about a clamp then. And the Doctor, for doing, in my mind, a half assed job. Why would one not have a clamp to go on the PEG line to keep what's inside, inside me, without leaking? Got me, but I'm going up there and ask.
What I did, but shouldn't have done was give Liz a note that said "There's no clamp on this, it's making a mess and I'm about half pissed off". That pissed Liz off. Because she is frustrated as well. She finds an old hemostat she has, that I didn't know about, and slams it down next to me. Well, me being me, I didn't let that lie either. I wrote a note and gave back to her, then hunkered down in our bedroom to cool off. I think everything cooled off in thirty minutes or so, and I apologized for being a little bitch earlier. So I think it's blown over. We both went to sleep. New day, and so far I'm okay. I hope Liz is as well. I am, however, going to go back up to Endoscopy and find out if they have a line clamp of some sort there. I'm afraid the hemostat is a little rough on the PEG line. But we'll do what we have to do, even if that's carry around a hemostat clamp the line. I mean, really, it's not forever, right?
Cancer Update: The Hospice decided I need a steroid to help with some swelling and bleeding. Both things are inevitable, but I think Hospice is just trying to make me better. That's not a bad thing, and it may work. Hopefully that's the case. My legs feel a little better today, and I don't have such a bad limp. I am not sure what that's from. I do know that I still can't walk full steam for any distance, and I pay for being up on them for any length of time. Maybe my legs are adjusting to the rest of me and decided to behave in a like manner. I can only hope. On the steroid front. Even when they aren't supposed to make you angry, they do me. I couldn't figure out why I was so mad all the time five years ago. Until I looked up one of the medications. Steroid. Damn, I hate that. This time, if I feel myself getting more and more angry, I'm dumping the medication and getting over that shit. Like right fucking now. I'm not going to make everyone miserable again. Not if I can help it.
Lessons I've learned the last week: Frustration is like a cancer, it builds continually and that's not good with my attitude. Best to find an outlet other than family. I found a doctor who wasn't bullshitting about the pain. I should be thankful, because I was mentally prepared for it hurting, just not quite enough. I did manage to keep my core relaxed. That's a good thing. Judging by the way the doctors and staff talk to me, I can only imagine that most of their patients are clueless about what they need to do. I read and research, along with Liz, the things that we need to know. Knowledge is power. I do like the fact that once in a while I can tell a doctor "No thanks, that causes this, and I'm not interested" Kinda knocks them off their God pedestal a little. Everyone needs reminded they are just human from time to time
Today's lesson: Find something that frustrates you and try to find away to fix it so it doesn't. That's what I'm going to do today myself
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