Two Years Too Long

Well my goodness has it really been two years since I have put mouse to virtual paper?!?  I am excited to get back to where I left off. I peeked through my old blog posts and giggled. Even as short as two years it is funny how much things have changed. How much I have changed.

When I left this blog I was on the path to finding my “adult self”. I can tell you that I found her and lost her. When I started this blog I was in the middle of a major move, a major breakup, all while defining the “new me”. I thought I was a big shot. Here I was twenty-one and reinventing myself. My biggest struggle wouldn’t be adjusting to island life, finding a job, or coping with a breakup…it would be the part of me I have always struggled with…CF.

If you know anything about diseases, then you know that they are a lot of work. So much time is spent at specialists, so much money is spent on medications that by the way can make you feel just as crappy as not taking them. It can be a task balancing what feels like a double life. For twenty-two years I have been trying to find that perfect balance, and just when I think I am so close to finding it…I lose it, all of it.

Twenty-one was they age I was finally going to get off the pediatric floor and walk among the adults…where hopefully I could start over and be a better “CF me”. I really could not wait to get to the adult clinic and be treated like an adult and stop feeling like I was in trouble all the time. That really was the hardest part of growing up CF, every appointment I did something wrong or not good enough, it broke me down until I was ready to give up. Different ages brought different mind sets. I wanted to be that patient that did it all right, but somewhere while trying to find the balance, being Emily and Emily with CF, I would get angry and shut down, all the hard work and steps forward were now halted or steps backwards…It still happens and I am twenty-two going on twenty-three.

The hardest part of living with Cystic Fibrosis, for me, is balance. I haven’t been to clinic in almost three years, which is incredibly stupid not to mention dangerous. I want to be the perfect Emily with Cystic Fibrosis. I want to be someone the younger community and parents look at and think, “If she can, I can”. A big part of becoming that Emily is getting myself back to regular clinic…even now my heart races just thinking about picking up the phone and calling clinic, I don’t want to be judged for the mistake of taking a “break” form my responsibilities. I choose to use my mistakes an lessons, I can’t be the only one who has ever tried to out run my problems. I am not promising to be perfect, just the best I can be that day. I will continue to grow and over come small anxiety’s so that I can be the best version of Emily I can be!



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