Iam Different. I look different. I Talk differently. I think differently. Having Cf gives us certain characteristics that we learn to adjust and adapt to. Bad posture, raspy voice, and clubbed fingers will give us away in a crowd. Our coughing is our calling card and is one identifying characteristic that we can't hide or suppress. So imagine the looks that we get even when we don't try, sometimes all we want to do is blend in with you and appear normal. I sometimes hate that as I'm getting older and things are getting more complicated in my life with my health that the severity of my health and the concern for the overall situation easily get overlooked or passed along. I wish the random people who stare and glare when I'm walking could see the struggle just to move and function to try and have some normalcy in my life. I dyed my hair purple. I think I love it. Now when people stare and I know they will,its okay cause its on my terms and I have accepted that I was made to stand out in a crowd. Im a unique individual and now I have the hair to prove it.

lots of love and hello kitty to all

Update

Its been so long since i have blogged. ill give you a little update text-align: center * Since September through February 2018 I have spent every holiday in the hospital. * In November I had bad pain/vomiting that was actually caused from my gallbladder * After a 2 week Iv course I had to have a drain in my side to help with pain and nausea from the enlarged and enflamed gallbladder. * Still waiting for surgery to remove gallbladder and still have the drain in my side. * After my last hospital stay February, I developed bad ptsd from previous hospital stay where I coughed up large amounts of blood.text-align: center * Also anxiety and panic attacks at night and have a hard time sleeping.

So My health has been very delicate. Its been hard on the health front because it seemed like everything was happening all at once and it has even brought up the conversation of transplant. Transplant. That single word is word invokes so much emotion. It will turn my whole life upside down. No one will ever be the same. Someone has to die. Their lungs in my body. Complications. Pain. and Excitement. The possibilities that could suddenly be real and at my fingertips. To plan for a future again and to think long term. it would be a second chance at life and the ability to truly live and make as much as I can happen. But it comes at a cost. Literally and figuratively But thats putting the cart before the horse for 2 reasons. - Im not quite where I need to be evaluated health and number wise - I already was presented to the board and was denied And I honestly don't know if transplant is for me. I have moments where I think yes of course how could I leave and not see everyone I love so much. I think about all the things I still want to do and experience. Then there are times when I'm tired of the pain and hurt, the struggle and the tears. Sometimes I don't think I have much longer left in me. I can only be so brave. So tonight I found what I have been missing for some time. My appetite. My appetite for life and for food. I have been enjoying my food and its safe to say that my insides definitely don't look like the healthy woman I look like on the outside. I enjoyed an amazing dinner tonight, a late celebration of my birthday. As I'm at dinner with some of the most important people in my life I felt so many emotions come over me in waves. I see so much love for one little girl, the love and determination that can build bridges. Hope that I will be one of the lucky ones. Tonight was perfect and if it was my last night on earth then when I close my eyes tonight and start to sleep I will be the luckiest and happiest girl on this earth and thats something to celebrate.