The past two months have been a bit of a nightmare for me, and probably for mike too, after all he has to live with me. FOP has been changing my appearance especially the top half of body, and its been such a struggle coming to terms with the changes, I dreaded summer coming all the pretty off the shoulder tops and pretty lace numbers.
I think of my self as a go getter and the feeling of being trapped is a constant reminder of the things I used to be able to do, and maybe never get back, the relying on people all day long drives me insane, I used to be so independent.
The thing is I don't always feel this way, just sometimes when it gets tough. I'm very fortunate to have the people in my life to help me, no matter how frustrated I become, you know who you are!
Current goings on
- I'm going to London at the end of September to take part in a clinical trial for FOP, which is the closest thing to a cure thats ever been, very exciting to be a part of. I will be on the drug for two years, no waxing and extremely dry skin, worth every bit of brow craziness ha ha.
- Getting an automatic car and learning to drive is my next challenge, when people tell me I cant do something that is all the motivation I need to prove them wrong no matter how long it takes.
Finding things to keep me busy is the main thing, I need distractions, new challenges. I can do anything so CAN you no matter what it is you have to overcome, we as humans can adapt to almost anything and there is no such thing as no I CANT or you CANT.