My name is Marin (Karen with an M, if you were puzzling over the pronunciation) and I was diagnosed with FOP when I was 3 ½.
‘Twas 1985 when FOP started making its presence known in my little body. Naturally my mother freaked out, dragged me to the hospital and begged the doctors for answers. I then took every ounce of luck I was ever going to get and wasted it on a doctor named Joseph Jacobs. (The man was brilliant. Seriously, it would not have surprised me in the least to find out that he was the basis for the TV character House.) All the other doctors voiced their incorrect theories and he came forward and said (this is obviously so very paraphrased) “You guys are all idiots. It’s FOP.”
I am a big believer in the idea(s) that anything is manageable as long as you can laugh at it and that you have to make your life as amazing as it is terrible. (We’ll go into that concept in a future blog post.) What this means is my life is full of crazy stories and black humour…which is ideal for a blog! This blog will differ slightly from my personal blog (which I primarily use to find my keys or shoes) but if you’re looking to read stories and advice re: surviving life as a medical freakshow, read on.