My appointment today went much better than my last, thankfully.
I believe because things settled down & I didn’t have a bunch of excess outside stress with other things like oxygen & rapamune fill issues (finding out I needed to move to specialty pharmacy when I was low on my rapamune refill with not much notice last time also happened last appointment) I was in a much better mood.
My score was kind of the same as two months ago (last month rebounded a bit because I think of the rehab & being back on rapamune).
Not better or worse — average — about the same as before.
So I didn’t have to obsess about my score or get depressed about it – like I had happen with some visits.
I did discuss some really needed & important things with my doc who really is a peach. I can’t say that enough. It was all quality of life stuff which I’m glad he makes equal time for. It’s just as important as medical symptom maintenance.
But I did miss asking him for a refill on my pain meds & getting my flu shot there, but I know I still have time for both of those & can have my PCP or local lung doc (or both) help with those two loose ends.
My appointment with Johns Hopkins is November 9. So tomorrow I’ll start doing a bit more work on that.
But I really needed to decompress after this appointment.
I felt slow & a bit tired, after but not super wiped & foggy like I did the last visit. The traffic this time going & coming wasn’t too bad. So we stopped for some food in Bethlehem before heading home.
It was nice to have that time to just center back. Things always seem to move faster than what I can keep up with sometimes.
Or our time is not our own many appointment days because we get delayed, or have to wait for a test or a doctor or something else & that makes a huge difference when you have limited energy to begin with.
Next week will be busy too because I want to see if I can get one of our cat’s shots updated & my car inspection done. They’re both due in November & that month will be crazy enough, so I’d rather get them taken care of.
This will be in addition to my normal rehab schedule.
Since I know I need a well visit from my PCP (primary care doc) anyway, not having the flu shot today at Penn I know wasn’t an end-of-the-world miss.
There were other things I definitely needed to talk about more & was able to. I also was able to get my blood drawn (every so often they take one for matching) without too long a wait & even before my appointment which NEVER happens.
I also know that my most of my local docs like me having the flu shot mid-late October because then I’m protected throughout the whole season.
It’s only if my PCP has the high risk strain or if I will have to get my lung doctor’s office give me that one after rehab one day (which is easy to do too).
I also know my PCP office is good at doing bridge refills on meds when I need them which is a relief.
So really what was on my mind the most came out & it was such a sense of relief to finally feel somewhat stable & comfortable with how things are.
Without everything being so rushed, harried, or such a bleeping mess just before or after my appointment, I could actually wind down.
Which I never get much chance to do.
Nikki, your headline definitely caught my attention. Thanks for sharing. I’ve circled Nov 9th on my calendar. Happy to help you and your travel companions with any pre-planning questions/advice or possibly in-person support for your Hopkins appointment. Standing by, and of course KW4U!
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you’re welcome Dennis, I figured you’d get a kick out of it… keep knockin! I’ll keep you posted.