A Harsh Reality

Anyone living in New England knows that the much-anticipated spring weather has been disappointing, to say the least. Here in MA, we've had a record-setting amount of rainy days, creating a dreary vibe. My personal vibe has been the same. 

What I thought were allergies back in March was actually a cold that quickly went straight to my lungs. I spent all of April trying to get healthy to no avail. I tried three oral antibiotics + one inhaled and still felt awful and had multiple bleeds in my lungs (hemoptysis).

I went to see my CF doc last week and luckily my PFTs were stable, but my other symptoms need to be addressed. The sad reality is that we're out of treatment options. I'd already tried the only oral abx that have any chance of working and she didn't want me to use IV abx so soon because I'm already so resistant to them with adverse effects on my other organs. So we had to get creative. Pending insurance approval (which can take at least a week) I will try inhaling an IV antibiotic via my nebulizer. This will also come with side effects but not as severe. If this doesn't work or if my lungs continue to bleed, we'll have no choice but to try another round of IVs.

For me, the hardest part is how hard it's been to keep up with life in general. It's been a struggle to keep up with daily tasks, let alone how busy springtime is and all the extra events there are to keep up with. 

Take for instance our annual trip to an indoor water park. While climbing all the stairs and running around is typically challenging, this year, for the first time, I had to leave Mark and Myles behind so I could go back to the room and take a nap. I also had to sit out more often and read a book while I watched them play because I was having such a tough time physically. This reality coupled with my now-8-year-old's newfound independence made for an emotional experience. 

I so badly wanted to partake in more of the fun because I could feel in my bones how time is flying by at warp speed and next year he'll want to hang out with us even less. I wanted to sink my teeth in and savor these fleeting moments more than anything. And yet, I couldn't. 

Since it's been taking every fiber of my being just to keep up with treatments, school work, sports, errands, etc. I'm left with no energy to be "fun mom," and that makes me feel sad and resentful. I've also let meditation fall by the wayside and that's counterproductive. I need to do better in that department and know that would help restore my sense of peace, which will only help me feel better. 

Just as I know the sun will again shine, I know I will feel better eventually. And while I hold on to my sunny optimistic outlook I am giving myself the permission and the space to sit in 'what is' and feel this dreary period. It's not always pleasant, but it's reality. There's a difference between wallowing in it and accepting it and I consciously choose the latter. 

Life is imperfect. I am human. Resilience is a skill I've been cultivating for decades. Let's do this.