Rivka Silver shares her go-to infusion hack that lets her stay active, even while caring for her baby. She also talks about how yoga and Pilates help her manage Gaucher disease by supporting physical health and mental well-being. Her approach blends flexibility, mindfulness, and everyday practicality for life with Gaucher.
Transcript
This is sort of something that came to me once I became a mom, but honestly, my nurse told me a funny story about somebody else who used this hack, and it was not related to that.
So basically, normally you get an IV kind of in the crook of your elbow. But my nurse figured out that if she puts the IV in a bit lower down, that if I bend my arm back and forth, that it won’t affect the medicine’s flow or anything.
She told me a funny story about one woman who was getting her infusion and needed to drive somewhere, and had the nurse, like, put it in such a way in her arm and hung the bag like on her mirror of her car and was, like, driving — like it wasn’t stopping her.
And after kind of hearing that story, I was like, “OK, you know, we can — we can do this.” Like, I can breastfeed my son and still play with him on the floor and everything.
So a life hack if you have to do a lot of stuff while getting your infusion, then ask them to not put it in the crook of your elbow and ask them to put it lower down on your arm.
And another one that I have, something that’s been very, very helpful for me, is to really stick to, like, Pilates or yoga. I know they stress a lot of weight-bearing exercises, but because Gaucher’s also an inflammatory disease, part of managing your symptoms also has to do with managing your mind.
And what I love about yoga and Pilates is that it helps with stress. And it also is a very good form of exercise for your muscles and bones. So I think combining that is a very, very important thing that has, like, been at the top, top, top priority of my managing symptoms journey.
