We have been monitoring my CK levels and I’m happy to report that they seem to be going back down. Not in the normal range yet, but on the right track. We will retest next week.
I had my fall infusions in October, both of which went well but have really wiped me out this time around.
I’m nearly 3 weeks out from the last round and still find myself needing to get in a power nap on most days; but I’m back to Pilates class and my usual routine, so that is great. Now if I could just stop eating Halloween candy, I’d be set!
I did have a “learning experience” at my first-round infusion at the beginning of October…
I love having my infusions at Mercy Hospital, because they use IV Support no matter what. IV Support is the team of IV champs who use ultrasound and nail it on the first shot, every time. All they do all day is put IVs in. They’re amazing.
I should have known something was up when not one, but two IV support nurses came into my room; but I was high on IV Benadryl, so I’ll blame that for my lack of suspicion. I’ll spare the details for the faint of heart, but after 2 attempts the other nurse took over. I whispered, “thank you” to which she whispered back, “I’m sorry”.
I spent the rest of the day with heat on my arm to reduce the chance of clotting. My entire left forearm was purple for 2 weeks.
The hospital is giving other nurses the opportunity to train with the IV Support team, which is great; but when the same novice IV nurse came into my room two weeks later, I was ready to decline my participation in that teachable moment.
Any other time: bloodwork, shots, whatever, I’m okay being a Guinea pig, but not my infusions. When your veins are crap from immunosuppressants and IVs and you’re about to sit for 4 hours to get a life-saving drug, no, I don’t want to be experimented on. Just let me try to pretend that this is normal and have a “positive” experience.
And you know what? She was totally cool with it. She said, “That is your right to decline.” Really, it was my right to be notified beforehand, but that is a rant for another day.
Passing this info along to anyone who needs the reminder that it’s okay to speak up for yourself!
Rheumatologist next week! TTFN!