Wednesday, April 6, 2016

Great Strides 2016


Sometimes you need a day of Rest (Big Tree fall Hard)


Great Strides is right around the corner, and I hope the weather actually becomes spring/beginning of summer by May 22nd. And I also hope that I am able to get better by May 22nd. Some of you who follow me on Instagram/Facebook, might be wondering why I want to get better, as I had recently posted positive news about getting PICC line removed and how I was able to go on two runs with two days, and that my PFT's hadn't been where they are since December 2014. This is all completely true, however I did a horrible and quick turn around, my lung function went from 70% back down to 57% with a two week period. It is very strange, as the first week after stopping IV's I was able to get in 6 different runs. However the last run was definitely more of a struggle with coughing up a ton of mucus and a mini vomiting episode. Nevertheless, I pushed forward thinking that was just a little bump in the road to continuing to feel fabulous. 

But for some reason I didn't continue to feel well, after that I just started declining in feeling more tired, started getting fevers, aches, and coughing a ton. So obviously all of this was making me feel very exhausted, since I was also working. 

Currently, I'm back on regular oral antibiotics and prednisone, as we are hoping I don't have to get another PICC line too quick after just finishing IVs. Everything is a trial with CF, there is no black and white, the doctors obviously know medications that should work, and treatments that should work, but sometimes the medications and treatments for whatever reason just don't take. Maybe I've become immune to something or I'm allergic or it might not mix well with something I'm currently on. It's a complete game of juggle, but it's for my own body and trying to find out what continues to make it work properly. 

I am pretty much always a happy person, but the one thing that can get me down is my CF as it can be a struggle at times, however I would really rather have it be an after thought and not my whole entire life. SO Please if you are able donate to the Maddie Mockingbirds so that the Cystic Fibrosis Foundation can help us find a CURE! And if you are around for May 22nd, join our team and you can come walk with us and you might even get some Gelato!! 

2 comments:

  1. Sorry to hear you are feeling poorly, after experiencing such improvement especially! That you would really rather have your illness be an afterthought resonates so much with me. It's so unfair that it claims front and center stage as much as it does, and with all the unexpected disappointment. Hope you and your team are able to get to the bottom of things quickly and you start to improve soon. Always thinking of you! Xoxo

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  2. Thank you Alyssa!! I also think of you very often and am always hoping your feeling well!!! Sending positive vibes your way!!

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