It was always trying to find the balance between pushing myself but not over doing anything. Prednisone required me to adjust our social life. I hated appearing at parties with extra weight and a huge round moonface. And the sweat. Oh, the sweat. We also worried about being around a lot of people because I also had no immune system. Still don't. Still worry. No movies or live concerts or anyplace where I would be surrounded by people. Coughing, ill, contagious people. I also hated being short of breath just doing simple tasks. It was embarrassing. I didn't feel like myself. I lost the feeling of being a woman especially at night when I had to sleep on a wedge and attached to the long oxygen hose. I never felt attractive.
I felt ill.
What changed? Pulmonary rehab. It was my social and emotional support group as well as kicking my butt. The more I worked out, the less I would sweat. I suddenly could do simple tasks without being short of breath. I began to feel more like myself again. I no longer felt "sick." Michael and I began to venture out and tried to wrap the disease into our lives instead of letting it drive our lives. He kept reassuring me that I was still me. He loved me. We would do this final walk of my life together.
Little did either of us know that ten years later, I am still here. I am in the best shape of my adult life. I am fit and ready for a lung transplant if I experience the sudden crash. I continue to astound my doctors. We adjusted our lives for the disease then lived it as normally as possible.
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