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 share. If you’ve read my post, Is This Going To Be Forever?, then you know that this fatigue has been plaguing me for quite some time.
About a year ago, my health took a significant dip. I documented this on my YouTube channel over a course of vlogs. My lung function declined significantly; I lost a lot of weight, very quickly; started requiring supplemental oxygen at night; lost the ability to exercise and be active; and I developed severe chronic fatigue. This was not a good time. My CF team did not give up in working to find out what was going on in this crazy body of mine. After tons of testing, we were able to discover from a sputum sample taken during a bronchoscopy that I was growing a new bacteria.
The treatment for this bacteria is long-term and requires three oral antibiotics. I started on the regimen right away. Luckily, aside from some minor GI issues, my body did not react negatively to the medication. I have been on the treatment for almost a year now. The results have been slow, but they have been present. I stopped losing weight some time within the first three months of treatment. By the sixth month of treatment, I started only using oxygen about half the nights. By the eight month I stopped using oxygen at night completely.
This was great timing because we took a trip to Germany a couple of weeks before Christmas, and after months of several phone calls and lots of brainstorming, we could not figure out how to get oxygen to travel. More on that later. I did a course of IV antibiotics that I completed the day before we flew out of the country. We spent ten wonderfully adventurous days wandering various parts of the country. I am so thankful that my body was able to pull it together and the treatment kicked in right before we left. I lasted just barely long enough to get through the trip, but I did and it was the most magical time.
When we got back from our vacation, my body was beat. I needed a vacation from my vacation. Then there was reality. I had work to catch up on, I had holiday obligations, and I had a service dog that hadn’t worked in two weeks. Thoroughly exhausted, I jumped into it all.
A couple of weeks later, I caught a cold. It wasn’t terrible or anything. It was just long and dragged out. Then it led to a flare of all my CF complications at once. I was knocked out for two months… two whole months. It was not fun and caused a rollercoaster of emotions, most of which were frustration. After a three weeks cold, three weeks of IV antibiotics, and three weeks of a steroid burst with a permanent daily increase, I am finally back to baseline. This baseline is not where I want to be. It’s new and it’s lower, but this is currently how I am.
Now that I am where I am, I have been spending my energy catching up on the last two months and getting used to this new baseline. Yes, I have been quiet, but that doesn’t mean I have stopped. I have been getting ahead at work, I have been delving into my hobbies again, and I have been starting new projects. The most exciting project that I have been working on is starting to make videos again. I started a YouTube channel called Dear Cyster with my sweet friend, Jordan, where we write video letters to each other. I am also writing again (obviously… :)), and so many other things that make me happy.
So… how am I? I am good. I am fighting and I am struggling, but I am good. There is much love and happiness around me to keep me living, laughing, and breathing.
