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Do you share your PFT numbers publicly?

Oct 16, 2019 05:18 am | Jenny Livingston

Replies: 0
CF is undoubtedly a numbers game – weight, lung function, blood sugar, etc. It seems like we’re constantly being bombarded with information in the form of numbers! One of the most important numbers is associated with pulmonary function testing (PFTs). Some people like to share their numbers publicly, while others choose to keep them confidential.
I stopped posting my numbers online years ago. I didn’t like the feeling of comparison and found that when I posted specific numbers, the ensuing discussions were always focused exclusively on numbers. My FEV1 doesn’t always reflect how I’m feeling, it’s constantly changing, and it’s only one part of a much bigger picture. I’d much rather discuss other things!
However, I understand that PFT results are important and helpful in understanding what’s happening inside our lungs. Sharing numbers can be a good way to connect and exchange information with others. So, while I don’t personally enjoy it, it makes a lot of sense to me that people like talking about their numbers online.
What do you think? Do you share numbers publicly? Why or why not?

Real Talk Tuesday: The Intersection of Chronic Illness and Mom Guilt

Oct 16, 2019 03:58 am | Jenny Livingston

Replies: 1
If someone were to ask about the worst part of living with chronic illness, they’d likely expect to hear about physical symptoms. But for me, the mental and emotional aspects of CF can be the most difficult to cope with. ⁣⁣
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One thing that keeps sneaking into my life and whispering hurtful lies is something I’m sure many of you are familiar with: 𝐆𝐔𝐈𝐋𝐓.⁣⁣
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The guilt of needing to cancel or change plans. The guilt of feeling like a burden on my friends and family. The feeling of never doing enough. The guilt of choosing to nap instead of cleaning the house. Feeling like I’ve trapped my partner into a life of hospitalizations, uncertainty, etc. And, the most persistent form of guilt in my life: mom guilt.⁣⁣
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What is mom guilt? It’s the feeling of anxiousness and doubt experienced by mothers when they worry they’re failing or falling short of expectations. For me, almost ALL the mom guilt I experience is directly related to having CF.⁣⁣
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I worry that my daughter will be (or maybe already is) resentful of the time I spend each day doing treatments. I’m afraid that she’ll look back on our time together and remember all the things I didn’t or couldn’t do. I fear that she’ll be irreparably damaged by the trauma of having a chronically ill mother. I worry that she’ll spend a great deal of her teenage years wishing I was “normal.”⁣⁣
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The logical part of my brain tells me that I have nothing to feel guilty about because having a genetic disease is not something I can control. But emotion rarely listens to logic.⁣⁣
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I don’t know how to get rid of this specific type of guilt, but there are a few ways I’ve learned to help mitigate it:⁣⁣
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1) Having honest discussions with my daughter. ⁣
2) Having a partner and friends/family who help pick up some of the slack when I feel like I’m slipping. ⁣⁣
3) Practicing grace and kindness to myself (which can be so hard). ⁣
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Do you experience guilt related to CF, motherhood, or both? How do you combat that guilt?⁣⁣