• What Is Your Bête Noire?

    Posted by bailey-anne-vincent on April 6, 2021 at 10:22 am

    Not to be really negative, but…. Let’s be negative!

    What is your bête noire when it comes to Cystic Fibrosis treatment?

    For example, is it Tobi because you hate the way it makes you lose your voice? Is it lung drainage because you hate being upside down like a bat? Is it working with RT’s in hospital or being woken up early?

    I’d love to know what is the straw that always hurts your camel’s back, and how do you overcome it (or do you just accept it as something to avoid)?

    I think for me, if I had to choose, my current cross that makes me cross is…. steroids. Anything to do with steroids. The more I take them, the more my reactions seem to grow. I used to not mind the puffy face or breakouts or night sweats, but in recent months, rounds also bring on anxiety, temper flares and blazing hot heat (and since those are pretty contrary to my personality, I hate it). I hate feeling like I’m “not myself” mentally or in temperament. What about you?

    Don’t worry… tomorrow will have a positive theme to balance out the “Bête”!

    jenny-livingston replied 3 years, 3 months ago 2 Members · 1 Reply
  • 1 Reply
  • jenny-livingston

    April 6, 2021 at 12:34 pm

    I’ve been thinking about this, and I can’t really come up with one specific thing. But your straw/camel’s back analogy is one that I frequently use myself. For me, that final straw is always something different. Once, it was a flu swab… just a regular ol’ swab. But I was sick, emotional, and had been through the wringer already that day, and that was the thing that sent me over the edge. I cried for a full 40 minutes, all the while reassuring the nurse that she’d done nothing wrong – I just needed to let those tears out.

    Another time, it was the fact that I had a new nurse the night I was admitted to the hospital. I got into the room late, after a PICC placement in Interventional Radiology. I had been fasting all day so I’d be able to receive sedation for the PICC placement, it was late, I was sick and exhausted. The nurse was unsure of certain procedures (I’m assuming?) and had to keep finding other nurses to help her. By 11 pm, I was so frustrated because I wanted so badly to get some food and go to sleep. I was very short with her and kind of sassy. Randy was shocked because, like you on steroids, this behavior is so unlike me!

    So perhaps it’s not a single thing for me as much as it is everything at once. When I’m sick and tired of being sick and tired, anything and everything can be my bête noire!

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