The Remicade is a no show. My rheumatologist has basically banned any patient who will stand not taking their immune suppressants from taking them. That is fine for me.To be honest, none of the meds have helped me much, and with the other treatments I am using, I am well as I ever have been. Which still basically means I am fighting to stay sitting in a recliner rather than in bed, trying to go for a short walk (15 mins total in a day) and trying to do a little ultra light light weight weight lifting. No, it is NOT adequate workout levels for someone my age. I am well aware of that. But I don't know what else to do. If I push it, I will be sick in bed for three days to two weeks, which puts me at the start all over stage. I am tired of trying, beyond words, dear reader. So if you think of me, pray for strength.
My eyes are still holding at doing better, taking light a bit better. It's a knife edge to walk. Too much light will end the good days and land me on a bad for however long. But any relief is wonderful.
I think a lot about the life I used to have. I really honestly feel like I died. That woman that lived, that went to college and had all those dreams for her life died. I feel like her ghost, living in a shadow world (likely made more so by the darkness I dwell in) and keep hoping to find a way out, back into the light of the living.
Never take healthy days for granted. The joint pain came in one night. One night I was fine, tired, the next day I could barely walk. I felt worse and worse the longer I tried to work, and gave up in less than a month because I felt so terrible I couldn't drive anymore--much less be a sharp nurse. Never forget it can be gone very quickly. Live your dreams, in the honor of God's house, to the fullest.
