On Life with CF

Next month–March 27, to be exact–will be 16 years since my diagnosis. Sometimes, I feel like I’m managing okay. Other times, like the past few weeks, I feel like I’m drowning.

I worry that I’m not doing enough. That I could be fitting in more treatments. Working out more. Getting more sleep.

But I also have a beautifully full life, which means I constantly feel torn in a million different directions, with my health–and this constant fear of the “what if”–at the center of it all.

I have a full-time job that I enjoy. Freelance gigs I want to continue. Stacks of books calling out, “Read me! Read me!” Advocacy work that I love and is fulfilling.

I have a husband who I love and want to spend time with. A puppy who needs my attention–and whose cuddles I want to hoard while I can. A sister, a mother, a father, an aunt, a cousin, relatives in far away places. Friends here in Baltimore, Chicago, Ohio, California, New York.

And what I’m giving never feels like enough.

It took me years to get to a place where I understood the importance of taking care of myself. Some of that was denial–not wanting to admit the reality of all that “taking care of myself” entailed. And now that reality is all too clear.

I rarely miss a treatment, I participate in clinical trials, I regularly visit my CF clinic, I get a yearly flu shot, I do my best to stay away from people who are sick, I wear a mask whenever I’m at a doctor’s appointment. And, most recently, I’ve committed to working out–weight lifting, training for a 5K, weekly cycle classes.

But it takes an enormous amount of time and energy, both mental and physical, it never feels like enough.

This disease is relentless. Despite my best efforts, CF still rears its ugly head. And I never get used to that part.

This morning I woke up to my latest sputum culture results: a new bacteria. I immediately called my clinic to see what they had to say. Thankfully, they aren’t overly concerned–but they do want to treat it: a month of antibiotics. The last time I took this drug was a little over two years ago (which is awesome–I’m reminding myself of that) and it was rough. The first week, each dose–a powder I inhale through a handheld device–sent me into fits of coughing, making the twice-daily doses take 20 minutes to get through, leaving me feeling sicker than before, and giving me a serious case of laryngitis.

All things considered, it’s not that bad. I can get through the first week, and the following three. I’m just tired.

Tired of doing all the right things and still watching this disease win. Tired of never getting a break from CF. No day off, no babysitter I can call, no vacation I can take. Cystic fibrosis, and all that it asks of me, is with me every single day.

I have a truly incredible support system–which helps immensely and makes the rest of my life possible. But I still have a hard time knowing that everyone else can walk away from CF.

I know I’m lucky. It could be much worse. But every time something like this happens–my PFTs decline, I culture something new, my symptoms worsen–I worry. I worry that the worst is happening. That I won’t bounce back. That this is my new normal.

After 16 years of (knowingly) living with this disease, I’m still not used to it. I still find it impossible to accept my reality. I know how easy it is to look at me and think I can’t possibly be living with this ticking time bomb inside me, because I look in the mirror and think the same thing.

This bacteria is a minor setback, one that we can hopefully defeat thanks to the power of medicine. And eventually I’ll find my footing again. For now I’m going to go easy on myself, try to relax as much as CF will allow (think lots of tea, maybe a book purchase or two, some binge watching, and some delicious food), and hang on to hope ❤

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