I am a 30 year old woman who was born with a rare form of Muscular Dystrophy called Congenital Fiber type disproportion.
Right now, I battle a lot of pain due to several spinal fusions and reconstructive surgeries on my feet. I feel like my body is crashing. I went to college 5 hours away, did it in 4 years, lived in NYC for 3 years, then it all ended. My body slowed down. Surgery left pain and my muscle disease made it hard to get out bed. I battle depression. I work 20 hours a week, when I used to work 50 after college. I'm having a hard time letting go of the old me. I miss her. I know she's in there.
I have met a wonderful man. Like no one I have dated before. He sees me the way I wish I could right now. My concern also lies in whether I can have children of my own. I know physically natural birth is not possible. But I need to know that I will be able to have children of my own. I have always wanted and planned to adopt, but I want one of my own if possible.
I guess I am looking for some advice or stories from women with congenital myopathies and families. How did it impact their lives, health, marriage?
I welcome any input, ideas or support.