First, thank you so much for the kind words and support. It really helps.
Last weekend my brother came to visit and I showed him my notebook and database. He thinks I keep better records than the doctor! Of course that’s not really true (I’ve seen my doctor’s chart). As I’ve been plugging my notes from past appointments into my database (testing to see which parts need tweaking yet), reading old symptoms reminded me of how truly awful I felt for the first couple years.
There’s nothing like a quick review of the past to highlight how incredibly well Enbrel is working for me. Getting all the sugar out of my system helps, too.
I spent years planning my errands so that there wouldn’t be too many at a time. “Pace yourself” is a lesson learned early on (even before an RA diagnosis). Three stops was my max, then it was time to head home and take a nap. Going out to dinner was never an option; lunch maybe, but never dinner. I tried not to make many commitments, because I couldn’t count on having the energy to follow through, but wouldn’t let people down if I’d given my word.
Things did improve after being diagnosed. Every new DMARD helped my joints be a little less sore, and I wasn’t quite so exhausted, but I was still tired all the time. Since the addition of Enbrel, I’m down to only one joint that really bothers me (yes, my rheumy finds that others are tender, but nothing like before). ONE! The thing I love though, is having energy again.
Energy! Yes! I’ve been able to take my kids places and do things with them. I committed to teaching Sunday school, because I know that I’ll feel well enough to do the prep and still show up to teach. We recently went to a wildlife park and spent four hours walking around. I felt such a sense of victory!
This morning I took my kids ice skating. Truth be told, I was a bit hesitant about this one. Given the course of this disease, though, I figure I better do all the living I can while I have the chance. I had fun, and the kids were delighted that I skated, too.
My orthotics fit inside the ice skates and worked perfectly. I couldn’t lace my skates up tight enough, but after all those years of tying kids’ shoes for them, they were happy to return the favor.
As I sit here, in addition to the shoulder issues, my hip is sore and my knees are bruised. Yes, I fell. Twice. And do you know, I love knowing that these joints are sore because I was out there living instead of sitting on a bench watching everyone else.
Visiting with the staff as we were leaving, I commented that it’s years since I’ve skated. It’s always been so much fun. The staff said, “It’s never too late.”
We never know what life is going to throw at us. Someday it might be too late.
I want to do the things I can while it’s still a possibility.