Today I am lowering my prednisone by a half. One little half. That one half means I am one half closer to being completely off my prednisone. It has been 3 years since I came into this Lupus flare. It seems like forever. Maybe that has to do with the fact my memory was gone for half the time. Which makes it kinda nice since I don't quite remember how bad it was. I have a walker in my garage to remind me how my Lupus affected my Central Nervous System and I was losing my ability to walk. I do have a great story about leaving a dressing room without my pants on and countless stories about friends who fed my family and cleaned my home until I could stand on my own two feet. To get out of my flare I started on 60mg of prednisone along with receiving weekly doses intravenously of 1000mg of Solumedrol, 1000mg daily of CellCept (an anti-rejection immunosuppressent drug), and my old faithful 400mg of Plaquanil (an anti-malarial drug). Now I am down to 4.5mg of prednisone, CellCept, and Plaquanil. Every two weeks I get to take the prednisone down half, as long as my Lupus remains in remission I keep going down. Eventually I may even get to stop the CellCept.
I really am bad about taking medication. I know it is what has saved my life, but it is a constant reminder that I am sick, that I am waiting on a miracle for this Lupus to be cured. Until that day I will never have a day that I can go outside my home and allow the sunshine on my face, open my drapes and let the sunlight brighten my home, awaken in the morning able to move without stiffness and pain, and not feel fatigue as I begin my day. However with these drugs my life has become easier. Most days I feel almost normal, I can get out of bed with in ten minutes, finish a chore or two before I need to rest, and make dinner for my family. Today, I will celebrate with my family that I am below 5mg, one half closer to a med free remission. And I will keep hoping for my miracle, a Lupus cure.
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