So I think I'm ready for the specialist for the toddler tomorrow. The milestones are written up. I have three questions with a few more to follow depending on the tests ordered--this is probably the shortest list of questions I've had. Ever.
I've got things all tightly compartmentalized. I don't know how I did it. I spent the weekend imagining some pretty awful worst case scenarios and crying, then, all of a sudden, it was over and I was calm.
Although my neck and spine are now screaming in agony. Gee, I wonder why?
Anyway, tomorrow is also supposed to be my first prednisone free day, which, ummm no. Not gonna happen. I'm striking out on my own a bit and going to taper down one more step to 2mg for a few days because I just cannot face dealing with zero energy and the toddler's medical issues at the same time.
I feel like I'm being a pretty bad patient. Making up my own prednisone taper and all. However, it's no different than me tapering down on the inhaled steroids. I know the inhaled meds aren't supposed to cause withdrawal symptoms or suppression as a general rule, but hello, here I am, the 1% outlier. Have we met?
So I do have some experience with this. I just never really realized I was doing my own tapers before and not killing myself.
That epiphany dawned this week. After years of ramping up the inhaled steroids during asthma flares, then down, and then back up again when my energy tanked--I finally connected the dots. Look everyone, I have a clue! Ooooo shiny!
Sometimes I am slow on the uptake.
I guess I should probably mention this to the endo at some point. Do you think the pulmo wants to know? I am confused about who cares about this.
I do think the adrenals are working again. The step down to 3 mg from 4mg was not quite the nightmare I anticipated. I had some days where I felt pretty good. I've been able to do pretty much everything I want. Yesterday I was doing pirouettes in our soon-to-be dining room.
Just dancing in an empty room, dredging up ballet lessons from the primordial soup of my college days. I can't remember the last time I spontaneously did anything physical. Just let my body go and do what it wanted to do. It was nice.
So this is a good sign yes?
Never mind my pirouettes suck. I am a fat middle aged woman with facial features courtesy of Cushing's, right? Not exactly So You Think You Can Dance material, you know?
But the toddler and I had fun.
I am cautiously optimistic that I will be able to get back to exercising next week. The dogs are going to be thrilled to be walking again and I can't wait either even though I know they are going to poop on every corner.
Maybe the worst is over, at least when it comes to prednisone.
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