Off schedule infusion day throws me.
The routine is different. I didn’t get my post-infusion egg souffle from Panera and that just feels wrong. I can’t take my customary post-infusion five hour nap because of several conference calls I scheduled when I THOUGHT infusion day was yesterday, so that sucks since I am struggling currently to stay vertical and conscious. This legal call to discuss client contracts at 3PM is gonna be SUPER fun as a result.
There was a new room of “sweet pumpkins” in the Wednesday group, some of them also newly diagnosed. Turns out none of us feels like we’re really getting what we need from our neurologist but since our neurologist is “the best” and all, we all feel the need to stay the course. When looking this disease in the face, none of us are willing to leave “the best” and risk missing out on some cutting edge new treatment that might be coming along. So we all wonder what our options really are, when you come right down to it. And we stay put.
There is an air of concurrent desperation and resignation in the infusion room that is hard to rationalize. Feeling both of those things at the same time is rather unsettling. For all of us.
Today I got a great recommendation from a fellow infusee about a new primary care doctor, so that was a great outcome. She said this doctor listens and cares and helps difficult things (like many diseases) make sense. The woman who gave me the recommendation doesn’t have MS. She has some kind of blood disease that causes neurological impairment, I didn’t catch the name of it. Her infusions are of something different than mine. I got the impression it was pretty hardcore because she wasn’t alone in the infusion room. She had a caretaker.
Sometimes my mind gets overwhelmed by all of the things people have to deal with in this life. Sometimes it quite literally blows my mind.
I’m technically off work now for the rest of the year. I’m sure it won’t be completely quiet but, for the most part, I am free. Maybe it will be a good experiment to see what life is like when work isn’t breathing down my neck or invading my thoughts every minute of every day.
I mean, that probably won’t actually stop so it’s a flawed experiment from the start. But it’s nice to dream.