I had seven voicemails when I returned home from a magical, soul-inspiring trip to Scotland in March. They were all from pharmacies. SEVEN calls about medications. I’d abruptly transitioned from fairyland back to reality. Normally I have a “whatever needs to be done” attitude when it comes to managing cystic fibrosis, but this time anger bubbled to the surface. And, in full transparency, it hasn’t dissipated.
At my next therapy session, I mentioned this surprise rage. My therapist encouraged me to voice my frustrations—the ones that have apparently laid dormant in me, waiting to be triggered by a trip to Scotland. The subsequent rant covered the following topics, shared here without profanity.
I’m angry that I have to get up early to do respiratory therapy EVERY DAY to be able to breathe somewhat adequately. It blows my mind that most people wake up breathing just fine—and continue to do so all day without ever consciously thinking about it.
I’m annoyed that I have to take pills every time I eat—and that the number of pills varies based on what I’m eating. It’s frustrating to constantly dig through my purse at social events, estimating how many pills I need. And if I don’t guess correctly, I pay the digestive price.
I’m mad that I have to endlessly fight with insurance companies to get medications I would prefer not to take in the first place. Chronic illness is expensive AND it makes working difficult—a seemingly impossible conundrum.
I’m frustrated that the increased life expectancy has shed light on additional comorbidities that present in individuals with CF. It’s the “But wait, there’s more!” that never ends.
Some of you might be thinking, “Did I miss something?. I thought you were doing so much better on that new medication that came out.”*
There’s one more item on my Things to Be Angry About list: asking for donations.
I’m sick of trying to articulate why we need a cure for CF. It’s yet another thing that leaves me exasperated, but I refuse to stop fundraising. I should have been dead long ago, but somehow I’m still here. I long for a future in which nobody else is making their version of the list above.
So, if you can breathe or eat without extra effort—or enjoy a day without a call to a pharmacy or insurance company—I’m happy for you. And a wee bit envious.
With your support, I can move “asking for donations” onto the Things to Be Grateful For list.
