Wednesday, July 31, 2013

Gift If Life

It stems both from Doctors and the parents of people with CF. 
Listening to the Doctors talking from the Gift Of Life. They say "nowadays PWCF are healthy, and go on to live into their teens"
I have a huge problem with that. The little girl who was in the room had a portacap in her. How is that healthy?
I feel there is two separate meanings of being "healthy". Is it CF healthy or actually healthy.
I read PWCF say that they are healthy. No, they aren't. Healthy isn't being on. Few tablets a day, or live with a port stuck in you. 
I feel as though its a false sense of security. If the Doctors tell them that they are healthy, then the parents will inevitably go with that. They except it.
I was told I wouldn't live past 10! I'm 27 now. My parents never excepted what the doctors told them. They pushed on, and did more then what was told or asked. As a result, I do more then what was ever asked. Once you slip, it's hard to dig yourself out. 
For people who are going to say "are you saying my parents didn't do a good enough job and that's why I'm sick and in and out of hospital" or "you're the lucky one". 
I'm saying your parents were probably ill advised and thought they were doing their best, they probably were but it wasn't enough. That's the blunt and sad reality. Secondly, you probably went through the teenage rebellion and stopped exercising, and stopped taking meds. Thirdly, I'm not lucky. The most amount of time I have stopped exercising was or 1 month. Other then that it has been everyday, or even twice a day, running up to 125 miles a week. Does that sound lucky to you? While this show was on I just finished an 8 hour work day doing physical therapy, went on a 7 mile run and started lifting weights. So if you think it's luck, then you need to assess your way of thinking!

This mentality bugs the hell out of me. 

Sorry if I've pissed people off but its the harsh reality. It's too hard to play catchup with CF. 

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