Really embracing this disease is a lot harder than I thought it would be.
Not that I thought it’d be easy.
There’s such a fine line between managing cystic fibrosis (and all that it brings) and letting it take over.
That line seems thinner every day.
And then there’s the loneliness. All the thoughts and fears that interrupt my day… no one else quite understands what they’re all about.
I can’t go to a support group and vent how scared I’ve been the past week or month because there isn’t one.
And most online sites I find deal largely with the actual sickness. The hospitalizations, medications, etc.
But what about the emotional side? Or the financial side? And the emotions that come with THAT?
Sometimes I feel frozen.
There are things I want to do, figure out, try… but then the fears, what ifs, and questions stop me.
How will having cystic fibrosis affect XYZ? Or how will XYZ affect my CF?
And I get MAD. Really mad.
Because as much as I truly believe the cliche that “everything happens for a reason,” it’s so unfair sometimes.
Instead of taking a vacation with Mike, visiting friends in another state… I have to save for the mountain of medical bills and prescriptions that come in every month.
That’s what’s been weighing most heavily on my mind recently. The financial aspect. Having CF isn’t cheap.
I’d love it if any “extra” income could go toward something fun. Sun, sand, quality time with family…
Money is such a taboo topic. One I wasn’t sure I should bring up. But it’s a big part of what having a chronic illness is all about. The expense of it.
I always feel compelled to end conversations like this with an “it’s okay though” or “I’ll figure it out.”
But I’m not going to do that here. Because I want to be honest about how I’m feeling, and right now? Not feeling like “it’s okay.”
If I can’t be honest here, there’s nowhere else I can be.