My mind is just rattled. I just read a heart wrenching blurb from a girl who had cystic fibrosis like me and she made some very valid points in her blurb. I have grown up knowing CF as a killer. I have hidden it, denied it the time of day and have spurts where it is my day. I have been in and out of hospital and home on ivs more times then I counted. I'm stubborn when it comes to this disease but yet I have beat the statistics. The one that says the median age for survival now is 27 as opposed to 18 when I was born. But yet I'm facing the end with out a transplant. As we all know I'm listed and that is more what structures my days meds, sleep, weakness, pain, and travel limits. Here it is summer and I've barely been anywhere because of my limitations. What makes it hard is I'm missing precious time with my kids and family because I can't deny them the luxuries that I have to miss out on now. Is it my fault or is it the diseases? Hard to say since it's progressive I could be in the same predicament even if I was perfect with the meds. But as the other spoke she spoke of living the life of CF and her friends. I am blessed with very supportive friends when I'm around and available to do stuff but they don't live the disease like I have too. They barely know my treatments and daily routines. I guess I'm feeling a little less fortunate then her because she has that circle who have been there by her side learning her life and me I have the ones who know the life like a text book and that's the extent. They don't go through my emotions with me and I can say except a few I feel alone when it comes to hospital time. I do live my life and more recently I'm learning the limitations that I have had to accept as I'm progressing but my biggest fear is losing my self even more to point I lose the circle of text book friends so to speak. I know I have a select few who do anything to try and support me but like she said how many can say they know what it's like to live with it. My kids are my life and I am fighting for this life to be there for them cause how can I love them to the moon and back if I'm not here. They live the life of CF with me they help me with meds of all sorts and remind me why I'm fighting. I'm trying to stay positive, I'm trying to fight but how much can one do and stay positive while doing. I won't allow it to consume me but there are times it be easier to give in. I have been reaching out trying to go out of my comfort zone and seek what I feel is missing in my life. But I'm not quite sure I even know what that is.
Feb 08, 2016
I had my first call today for potential lungs but by the time I was able to head to the hospital they called back and told me one of the lungs were no good and would not work for me. Feeling really disappointed even though I didn't even expect a call for a few more months. I feel like I am just ready to get it over with and move forward. I'm trying to keep my head up so to speak but it is hard. Anyways back to the waiting game!
Jan 22, 2016
Yesterday I went to the CF doctor for an ill visit. Just like I suspected my lung function dropped and I lost 2 pounds. My lung function is now 26.6%, so back on i.v. antibiotics for the next two...