You’ve somehow found someone to walk through the life that is a cystic fibrosis life without scaring them off. Great! Now, how the heck do you go about planning a wedding that is fun, special, and undamaging to your health? This is a dilemma that I dealt with all summer. Now that I have survived the wedding and come out the other side healthy and happy, I want to share some wedding planning tips. Make it your dream There are few moments in life as magical as your wedding day. It is the day that celebrates the love and beauty of a relationship that took time and energy to cultivate. You dese ..read more

Cystic fibrosis has slowly, but surely, been creeping and nosing into parts of my life previously untouched. Just the other day I was watching a morning routine video on YouTube. All I could think was, “Wow. That looks like such a nice and productive morning. I should make my bed like that every morning because I love when it looks so neat.” Then, I immediately remember that I would do that, except I instead spend the entire morning coughing and out of breath. It takes all my energy just to wake up and get ready in the morning. Each step that my body takes in its cystic fibrosis progression ge ..read more

As I sat down to write my column for this week, a massive wave of writer’s block hit me. This has been plaguing me for a while. Great timing, right?! I started five different column pieces, each of which I would get a solid start on, and then nothing. I stopped understanding where the piece was going and didn’t like any of the words that I was writing. A few years ago, I started developing chronic fatigue. It started slowly, then quickly snowballed. In the past year, it has developed into brain fog. Very frustrating. I love using my brain for writing, reading, problem-solving, and critical thi ..read more

The CF community is no stranger to the fact that medications that we put into our bodies, especially the powerful ones, do not come without risks. However, they are necessary evils to battle cystic fibrosis. Lately, my battle with cystic fibrosis has been riddled with these powerful, yet damaging, medications. There’s a memory that sticks with me: I am lying in my hospital room, hooked up to my IV, thinking about how it’s already afternoon and I haven’t gone down to the cafeteria to get coffee yet. See, I’m the type of person who just sort of rolls with the punches. So, yeah, I was dealing wit ..read more

This past year has been one of the hardest and best years of my life. There have been many good and many bad things that have happened, and I haven’t been writing as much. So I wanted to give an update on how I am doing. If you follow me on Instagram, you might have a better idea. However, I don’t post everything on there either. I write a blog and share my life online, but it’s ok to not put every part of your life on the internet. I like having pieces of my life to myself, but I love sharing with this wonderful and supportive community… there are also times that I am just too plum tired to s ..read more

I know it’s been a little while since I have been active, but I do have a blog post updating you on the past year that is just about finished. I am really excited, though, because I made a friend! We have decided to start writing each other video letters on YouTube called Dear Cyster. People with cystic fibrosis are not supposed to be in physical contact with each other to prevent cross-contamination of dangerous bacteria. CF can be a very isolating disease due to this. We are not allowed to spend time with the people who just get it. We are excited to use Dear Cyster as a way to break down th ..read more

This past year I have battled with more fatigue than I have ever had to deal with before. I may complain here and there of being tired, but the truth is that it has been a constant. I keep hoping that it will go away. That the treatment and hard work I put forth will give me the energy my mind craves. It has caused me to fall behind in life. I have started so many blog posts, just to get halfway through and be too tired to keep writing. I spend so much more time resting than ever before. Even now, I’m struggling to fight through the brain fog just to write this update. I used to be such an ..read more

I was going to write a quick Instagram post on this feeling, but then I realized that it may be a little more deep-seeded than a quick blurb. I went to a show this weekend. Not a huge show. Just a rinky-dink bar show. A passion of mine is supporting the local music scene, and what better way than to attend shows. Also, a dear friend of mine that I do not see nearly enough invited me. I’ll admit, I know I’ve been kind of a hermit the last few years. A lot has changed in my energy levels and health. If I’m being true to who I am, though, that person is not a hermit. So, even though it was nea ..read more

You’ve somehow found someone to walk through the life that is a cystic fibrosis life without scaring them off. Great! Now, how the heck do you go about planning a wedding that is fun, special, and undamaging to your health? This is a dilemma that I dealt with all summer. Now that I have survived the wedding and come out the other side healthy and happy, I want to share some wedding planning tips. Make it your dream There are few moments in life as magical as your wedding day. It is the day that celebrates the love and beauty of a relationship that took time and energy to cultivate. You dese ..read more

Guilt. It’s a feeling I’ve had to process a lot lately. It’s something we all deal with from time to time. Maybe it’s due to a forgotten meeting, the dirty dishes piled up in the sink, or stumbling to bed without a kiss goodnight. Things happen, we are human. The guilt caused by being sick reaches an entirely new level of emotion, in a completely different ballpark. This is guilt without something to fix or to control. The guilt for me increased more and more when I stopped being able to live up to my responsibilities. It’s not that people don’t understand. I know that the people in my life ge ..read more