So… Wednesday is infusion day again. I’m SO looking forward to being on the receiving end again. I can always tell when I’m getting close. My hands ache… my feet ache… I’m physically exhausted. There are months when right before infusion it is all I can do to stay awake at work. And if we happen to have to drive on the less than stellar roads… there are times I toy with how much it would add time to the drive if I opted to get out and walk. Bear thinks I’m finding fault with his driving. I’m not. I know that it is my body being all pissed at me.
Some people figure that, since I’m down 50 pounds, I shouldn’t feel as shitty when it is infusion time.
I don’t hurt as bad when I do races (depending on where it is in my infusion ‘that time of the month’… ironic that I look forward to that time of the month since I had my hysterectomy… when I race). My hips don’t scream. My knees either. I’ve actually been toying with trying to run in my hobbit feet again since I am less heavy. But when the Orencia is wearing off… I still feel it.
And, yes, I know I’m way more crabby… bitchy… short tempered… when I’m nearing infusion day. I’m way less apt to shrug off the BS. I have gotten better about not saying what’s running through my brain… but it is way way more apt to be running through my brain now.
But what has really started to get to me… Cleveland Clinic has decided that I no longer ‘have to’ (read get to) see my doctor’s physician’s assistant every time I have an infusion.
Before, I HAD to see her or I couldn’t get my infusion. Sometimes that was a bit problematic (particularly because they are ALWAYS short staffed and they don’t usually have coverage for vacations) when my 4 weeks ended up landing on when someone was out of the office. I should be relieved that I don’t have to work around her schedule. But… now I can only see the PA once a quarter and my actual doctor once a year.
I am thinking there might be some interesting middle ground here. I mean… on one hand I don’t have to worry about my appointments coinciding with vacations. But I do have to worry about the fact that now they have scheduled my PA and my Dr to be at three other locations that they didn’t used to cover. That means that if I happen to actually need to see someone, my best shot is likely to be holding my fingers up to my phone camera so someone in a web-ex can say…hm… yep… you have fingers.
The “second best hospital in the country” has a funny way of showing that patients matter a tenth as much as $$$$$$$$$$$$$$$$$$.
Yeah… I realize that I’m bitchy. See above… my hands hurt enough today that they are making my stomach feel crappy.
Love and Light
July 29, 2019