Today I woke up, and my feet hurt. They pretty much always ache, to some degree. I had an ever-so-helpful (not) orthopedist tell me about 10 years ago that the surgery used to correct my clubfoot was “outdated”… yeah, not much we can do about that now! Basically, instead of using casts to nudge my foot in the right direction they did something with my tendons… which left my foot and leg a bit screwed up.
For me, the constant ache and fatigue of my legs is one of the most debilitating parts of how Moebius syndrome affects me now and has the most impact on how I feel. It’s hard to be positive and enthusiastic about life when you’re in pain. It’s hard to work when it hurts to stand up, much less walk.
I pop a few Tylenol Alleve and suck it up, that’s the only thing I know how to do.
My parents are cleaning out the attic of their house, and I got an e-mail with this blast-from-the past: Mister Rogers medical books!
I still remember these books well. And that’s kind of sad. I think I took “working through past medical procedures” a bit too intently… we also found my favorite doctor’s kit. I donated a bunch of toys and dolls and books, but these I’m keeping.
I’m keeping them as much for what they represent than for anything else. These books represent my experiences growing up with doctors and hospitals and operations and casts and appointments followed by yet more appointments. They represent me trying to make sense of that reality, and the resources that were available to me do that. They represent the efforts of those around me to prepare and educate me about these experiences (apparently not only did I go on a “surgery tour” at the age of three, I actually asked questions of whoever was leading it. Precocious much?)
Certainly education about the impact of early childhood medical intervention has improved, and I’m sure there are more sophisticated preparation materials available to children and their parents now – but finding these books makes me grateful that at least something was available during my childhood.
This series was certainly well-read and well-loved.
Love this video, and the concept of facility dogs! All my various therapies and appointments would have been so much more bearable with a facility dog there. I may whine incessantly about Kaiser sometimes (amazing specialists for my disorder, but such a bureaucracy!) but I’m glad they embrace therapy dogs. Animals truly are the best medicine.