Tuesday, July 5, 2011

To Medicate or Not

It's been a long 5 years since the initial flare and diagnosis of Rheumatoid arthritis.  The different medications have produced different reactions and side effects at different times.

My grandchildren have brought home from day care colds, flu and bronchial infections to share with me causing me to stop the current biologic while getting well.  Unfortunately that usually means that I never return to a therapeutic dose again before I end up moving to a new drug.  I've used all the orals, Humira and Enbrel to date.

The worst experience I ever encountered was with the new drug Cimzia.  My vision blurred, all the joints that hurt already, swelled and got worse, I lost feeling in a few fingers and couldn't straighten them.  It was several weeks after I quit the Cimzia before my vision returned to normal and my fingers worked correctly again.

Quilting and sewing has been a hobby/passion of mine for over 45 years.  It's hard to sew  or hand sew when the mind says go but the fingers say, 'no way'.  Some days I feel like I'm in a race to sew all my fabric before I cannot sew any longer.  The projects in my head are begging for completion but the physicality of it places a different reality on things.  I enjoy the good days and plan for days that aren't as good. 

It's hard to have to tell a grandchild, be careful, don't hurt 'Ama.  Come sit by me, I can't pick you up.  Let's read, will you help turn the pages?  Let's build something with blocks, but on the table not the floor.  'Ama can't sit on the floor.  Let's bake some cookies instead of walking the fields.