I don't think the antibiotics are working.
I have worked more diligently this time than any other stay in my past, and I am not getting better. I took more PFT's today, and at first, my numbers were the worst I have seen them in a very long time, but then slowly they crept up to be at the same exact place that I was one month ago. Something isn't working because my lung function isn't changing, I'm constantly exhausted, and my sugars are still fluctuating with a new and improved highly-concentrated-sugar-free diet. I'm pretty positive as of now that I will not get to any of the graduation parties that I was so excited for. I missed all of my friends actual graduations as well.
This is not a plea for pity, but missing out on the things you want to do so badly is not how life should go, especially not when you are giving it your all. I am giving so much this admission, and getting nothing in return. No. This is no pity party, I swear to you. I want none. I just am voicing frustration at the quality of care I am getting. I could have made this much progress just staying at home. If I was at home, I would be going to my friends' graduations and parties, not to mention spending time with my family. My cousin Meredith came home for a while from Arizona... WHILE I was out here! I miss her so much and I want to see her, because it has honestly been years. Her sister Margaux (also my cousin obviously) had her baby... WHILE I was out here! Granted she lives 2 hours from me us near Williamsport, but it would have been nice to been around.
As I get older, I begin to see how much coming all the way out here affects me. I'm away from friends, family, and fun. But if I look at the positive side of things, I gain friendships out here. Everyone in the playroom staff has become someone I can depend on, whether it be to just come in on their off time to hang out, or to bring me something I need that I can't get myself. In fact, Leslie brought me pineapple today!! I always have to order whole fruit platters to get 2 pieces of pineapple. Now I have 2 cans of my own pineapple to snack on when I'm in the playroom. They are too good to me. I love and miss everyone, and I want to thank everyone who reads my blog because it's a bit of insight into my life, and when I hear the positive thoughts from everyone, it makes being out here and dealing with all of the things I have to deal with so much easier.
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So have that feeling of working harder and harder than ever before on your cf only to have it get worse and worse and only work harder and harder over a time period of 6+ months... granted it isn't that long in perspective but it does wear a person's hope out a bit... hence the cause for a little depression or down days (and I do mean repetative days in succession not just one blue day)
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