Happy 1 year of treatment! You might have guessed that is typed with quite a bit of sarcasm. It is both easy and hard to believe we've hit a year of all this. A year of in home nurses, antibiotics, iv lines, and uncertainty. About 2 weeks ago I was so low. I felt like this was never going to end, this situation wasn't making me a better person, I had less compassion for others, and I was grumpy all the time.
Being a religious person, I was wrestling trying to figure out why I had to go through this. I know there are those who would say that's just life, that's what happens to some people, but me being me, I needed a reason. A reason behind why I can't be the mom I fully want to be, the wife I feel my husband deserves, the daughter my parents raised me to be was missing. I know that crappy things happen to wonderful people and I was stuck in the mindset of it's not fair, I don't deserve this. I try to be a good person, but my efforts felt wasted. I was laying in bed one night and found some much needed answers. I realized that when bad things happen, there isn't always a lesson to learn. Sometimes really crappy things happen and it's the way we handle them that matters. I honestly don't think there is a life changing lesson I am supposed to learn. I think what is supposed to come out of all this is the fact that I can get through it. I can remain a good person while facing hard situations. I can be of service to others without moving mountains. I am a good mom, wife, daughter, and friend. When a lot of things are out of my control, I can still control my attitude. I can control how I interact with others and the type of person I am. I can still show kindness. I can still be a version of myself that I once knew. The girl before the tubes, meds, treatments, and uncertainty. I can still be me.
The bacteria is still growing so we switched up my medications. We aren't sure if this combo will actually work so it's a wait and see right now. I have found slight relief for my headaches. We are going on 2 1/2 years of a headache every day so I'll take any relief so matter how small. Moving to Heber has been wonderful. The air is so clean and I love being able to go outside whenever I want. We have a park 2 blocks away from the house and Chloe has developed a love of going down the slide. I am very prone to sunburn especially with the meds I am on so we can't stay out too long, but it's still so wonderful to be outside. I need to find one of those big floppy hats to reduce the chance of getting sunburned. Any suggestions where to find one?
This month is Cystic Fibrosis awareness month. If you've ever had questions about CF, treatments, medications, the genetics behind it. . . feel free to reach out. You know I'm obviously not shy about talking about it and love informing others about an invisible disease you don't really know about unless someone you love has it. Knowledge is power and I firmly believe the more people who become aware of CF, the greater chance we have of one day finding a cure.
