With this being my first blog and first blog post, I just kind of wanted to introduce myself and where I am in my life right now. There is my about me page to get to know the basics about me, so I’m gonna skip over that little bit. Anyways, I am in my last semester of college and it’s a little bit bumpy. There are a lot of loose ends that need to be tied up and things are being a little tough to get together. Up until I went of to college I have had my parents dealing with teachers and doctors, but now that I am an adult it is all on me. I am also learning how to deal with not feeling 100% at the same time as learning how to be an adult. This has been quite a journey so far and I am definitely still learning. I am a music major and my primary instrument is saxophone. This requires a lot of breathing and lung power, so this has become quite a challenge to keep up with. Most days it is ok, but some days I can’t quite keep up. This has been something that has been very difficult for me to come to terms with. I have a lot of fun playing and love to challenge myself. It has been very frustrating not to be able to play what I want to play, or what I used to be able to play. I guess this is just part of growing up.
As for my personal life, it’s going ok. One of the most helpful parts of my life is my adorable puppy. Whenever I am feeling down or having a hard time he is always there to cuddle with me and make me feel better. There is nothing better than the unconditional love of a dog. He is seriously the best thing in the whole wide world. I also have the most wonderful best friend in the world. She has been through so much with me and is always there to support me. She watches out for me to make sure that I do my medicine and remind me to take my enzymes. I have an amazingly supportive boyfriend. He does his best to get me to do my medicine, even though I can be pretty stubborn sometimes. He likes to help me out by washing my nebulizer cups and filling my weekly pill container (most of the time). The most difficult thing that I have run into with my personal life is that I don’t have the energy that I used to have. A lot of the time I want to go out with my friends, but I am too tired or have to think about my medicine. I have lost a lot of friends because of that. It’s been rough because I am still used to having the energy to do anything and everything I want. It was only a couple short years ago that I felt like I was on top of the world. I had the energy to balance school, work, and my social life. I miss that a great deal. It’s been tough having to choose what to give up to make time for my medicine and enough rest.
Lastly, I would like to talk about where I am with my health. For the last couple of years, my baseline has been slowly declining. Last summer, I got really sick. That landed me in the hospital for almost a month. For almost the last year I have been battling an allergic reaction to the Aspergillus fungus that grows in my lungs. I have been on prednisone since September to help my body deal with the reaction and keep the inflammation down. My doctors have been trying to ween me off of it, but I have been stuck on the same dose since December.While going in for the monthly Pentamadine treatments to protect me from infections has been really annoying (especially because my CF clinic is almost 2 hours away), the prednisone has done wonders for my weight. I weigh the most I have ever weighed in my entire life right now!
So that’s all for now folks. Thanks for reading. 🙂
One comment